The Top Three Things That Help Me Manage My Chronic Illness

The Top Three Things That Help Me Manage My Chronic Illness

Narrowing this list down to just three things that help me manage my chronic illness has been tough.  I’ve tired not to choose the top three things that help me manage EDS or CMT or even look at it through the eyes of the main symptoms but more through the lens of my chronic conditions as a whole and how they play out in my life everyday, so that they may help you no matter what chronic condition you may have.

 

 

 

#1 PACING

 

When I checked in to the rehab ward at Stanmore hospital nearly nine years ago pacing was my enemy.  I was resistant beyond belief and had no idea how it would fit into my life let alone the impact that it would have on managing my chronic conditions.  

This extract is taken from a blog post back then:

“How would I ever be able to pace my days when I had so much to do and so many people relying on me?  How could stretching while standing in a queue in a shop help alleviate pain later on?  We had to colour code all our activities over a week, green – easy, amber – a challenge and red – hard work. The task was to spread out our ‘red’ activities over a day, with no two red activities next to each other.  The principle was fantastic but all my red activities were between 3pm and 7pm when the children are home from school and we do homework, reading, dinner, clubs, bath and bed.  The whole evening becoming a blot of red, not because each individual activity was hard in isolation but the sheer amount in a small space of time. How could I spread them out? Sorry kids no dinner tonight, mummy can’t have another red activity!“

Now pacing is something that slots naturally into my days without me even having to think about it. It is as natural to me as brushing my teeth in the morning or making a cup of tea.  In fact sometimes I forget my cuppa… I never forget to pace.  It is a non-negotiable when it comes to the management of my chronic conditions.  

I’ve lost the martyr role where I believed that I was responsible for everything and everyone… and then felt bad about it.  Everyone in our family is an empowered individual that can achieve anything that they put their mind to.

I have retrained and have a career that I have built solely around my health condition, helping others manage theirs – BONUS!

And even my working weeks have regular down times and schedule that works to three weeks on one week off pattern, to recharge.

And today, knowing that I am tired I am binge watching Netflix in-between writing a blog post and enjoying the garden and fresh air because that is what my body and energy needs now.  With no guilt.

But the real contrast is in the things that I fill my days with. Back then it was FULL of things that I had to do or should do. Self-imposed constraints placed on myself like punishments. That if I allowed time for fun and play it would be weak.

Now fun things are an absolute priority in my life. Scheduled in my diary like appointments so that they can no be missed. Time away with the girls, dinner out, breakfast with my mum, a spa session with my daughter. They refuel me and fill me full of positive energy. The roots of joy and purpose firmly planted once more in my life.

I’d lost who I was for a bit and with that EVERYTHING felt hard. Including pacing.

Remember, pacing isn’t just about doing less it was about spreading things out over the day so that I can achieve more. In the process I stopped feeding into that boom bust cycle where I would inevitably push, push, push CRASH! Freeing up space and energy for things that light me up and re-fill that energy bucket finally getting the balance.

You may also want to think about pacing to help you manage your condition if:

  • You often push through pain, symptoms or tiredness
  • When you have energy try to get everything done then pay for it later
  • Are scared that you will flare your symptoms so do less

 

 

#2 MINDSET

 

There was a lightening bolt moment when this changed for me. Outside Great Ormond Street Hospital, on the pavement on Guildford Place.

We had just had an appointment with a top paediatric consultant as Rubie was still not walking at 18 months and when she pulled to standing (she was really trying), her feet would often be facing the wrong way.  She was wobbly too.  Her physio agreed, this appointment was a good call.

But the outcome that day – she’s within normal limits.

That’s when the switch occurred.

No more stories.  No more doubts or fears. Just this deep inner knowing and trust in myself.  I became empowered in that moment and took control of the situation and the narrative around it.  This journey wasn’t going to be without its difficulties, this very appointment had proved that, but it was my job to show her how to live her life well and advocate for everything that she needs with confidence and humility.

And from that day forward that is what I have done. No more martyr, why us or victim playing out. Just honesty when it’s hard and and making sure that I keep doing the work around my thoughts so that my past is not projected on to the kids or the future.

Mindset is something I always work on.  And has been a game changer when managing my chronic illnesses. 

It is super powerful for deep thinkers to question their thoughts, who often think as a way to avoid actually feeling. But equally it can be really powerful for people who get lost in their emotions.

Both of these extremes are often seen in patients that are recently diagnosed or dealing with the overwhelm of symptoms, so mindset work is a win, win.  

 

Mindset work can help you in any area of your life but is fantastic when:

  • where you have judgements that limiting you
  • where your inner dialogue is taking you out of the game and causing you to feel stressed
  • when you get into habits of blaming
  • excuses or complaining
  • if you are a worrier and get stuck in negative thinking

(This photo was taken on the very pavement outside Great Ormond Street Hospital, on Guildford Place, nearly 11 years after that first appointment.  Directly opposite is a cute little Italian that we try to visit every time we have an appointment at GOSH. Even though at the time that appointment felt like a fail, it was the best thing that ever happened because it changed how we showed up for her and for ourselves every day since. There is learning in everything people.)

 

 

 

 #3 ADVOCATE LIKE A MF TIGER

 

Number three on my list has been very hard to choose. There are many other things that I feel have been important to me : acceptance has been at the heart of everything and absolutely deserves a mention here, as does self-compassion.  The way I treat myself has been so important.  And while encompassing everything that I do and how I show up in the world I really want to show you three clear management strategies.

My relationship to pain and my body… another biggy, worth exploring another day for sure but this week I have literally spent every single day doing my number three in some shape or form for me or one of the children.

Advocating.

 

Monday

On Monday this began on our way to Great Ormond Street hospital where I spent (what felt like the whole journey) trying to sort out two repeat prescriptions.  One that had not been processed by the POD (prescription ordering, direct) service, despite a confirmation email and the other that had been rejected by the GP due to a med review, but no one had told us until we went to collect it from the pharmacy and then chased it!

Followed by a very lengthy clinic appointment where I tried to tie up National and local services for the year ahead and get everything in place for health and education that needed to be before we left.

 

Tuesday

Tuesday saw booking of COVID jabs (straight forward) and flu jabs, not so).  Despite my son and I falling under the category ‘complex neurological disorder’ on the NHS website the receptionist cannot authorise and left a note for the GP to sort out.  I assumed this would be fine as we were always eligible when we lived in London.

Then I get a call from my daughter’s best friend, she is really upset that Rubs has been stopped by a teacher using the lift in school, which they are authorised to do) and instead of asking her why or being curious about what could be going on for her Just point blank tells her that she is not disabled.   When she explains that she is and invites him to look at her records he insists that she is not disabled.  An argument ensues resulting in, ‘well you’re not visibly disabled… it must be mental’.

My daughter and her amazing side kick handle it perfectly, report the teacher and reinstate the lift pass and telephone me enroute to their next lesson!! Advocacy in action, right there.

In my opinion an opportunity missed for the teacher because both girls are extremely bright and articulate young ladies, and he actually could have gained a lot from the interaction.

 

Wednesday

Fast forward to Wednesday morning on the telephone to school advocating on my daughter’s behalf.

What I know is important to me is for her to feel seen and heard and she didn’t in her interaction yesterday and that is what frustrated her the most.  That when she tried to explain her teacher chose not to listen, this is what upset her the most.  I needed to communicate that for her.

All children people with invisible disabilities should be treated respectfully and not have to prove that they deserve to use the accommodations that have been put in place to support them, or that they have to look a certain way either.

I could have a heart condition, chronic pain, renal failure, myalgic encephalomyelitis.  I could be using splints on my legs, or a prosthetic limb… but under my trousers you could not see.  Does any of this mean that I do not have a disability.

Ironic, that at GOSH the day before the team were praising her for using the accommodations that were put in place for her at school, despite her disability not being visible often.  And the very next day she was challenged for doing so.

In any situation I look at what can be learned.

I will continue to give Rubie the tools to advocate for herself. The language, the right people to talk to and play out the ‘what to do if people don’t listen’ scenarios with her also.

I believe that there a huge opportunity here to educate on what an invisible disability is and how students can better be supported in school by all staff and education for students.  Default should be set to curiosity not judgement.

It also highlights a conversation that needs to be had around sharing of pupil records amongst staff, how school ensure that these are read and procedures for using the lift.  This is especially important as this was one of her teachers and he has access to and should have read her records.

I have confidence that the school will follow these points up, and if not, I will be sure to as it will be of benefit to all the students at her school.

But I also secretly wish that I didn’t have to.

 

Thursday

My Thursday morning has been spend so far taking Rubie for a blood test and chasing the flu jabs at the GP.  They have decided that we don’t qualify, with no feedback.  So now I will have to put back on my advocation pants and show the GP that we do and which criteria that we both fall under and why.

A 2 min google search in the waiting room with the names of our conditions pulled up numerous government websites to do just that! but it will probably mean another 30 min phone call explaining and educating tomorrow morning to actually sort it all out – which is a bloody waste of a GP’s valuable time… and mine.

 

Friday

I have a foot and ankle clinic appointment following last year’s surgery. But mostly I hope to get a follow up from school saying that they will review policy, have planned an extensive education programme around invisible disabilities for staff and students and our flu jabs can be booked without having to prove our medical conditions.

 

My Hope

I dream of a world where you don’t have to prove and re-prove your disability or health condition to those that actually have your records and should understand and be there to support you.

Until then, I hope that the people on the other end of the telephone lines, manning reception desks, booking appointments, teaching my children – just listen with and open mind and curiosity.  And when mistakes are made, they are helpful and do their best to help to rectify them.

We are all human and call it wrong sometimes, but it only gets better when we admit that step up and learn from it.

That would actually change everything, until then we need to learn to step up for ourselves and those we love to help to manage our health conditions and needs.

 

Update

As of writing this Rubie’s school have dealt with everything perfectly (as I imagined that they would). Communication as always is clear and open.  Rubie is happy and it seems that all of my points have been considered and followed up and the SENCO is calling this week to discuss further.

As humans we can learn from everything and organisations are no different.  If they choose to it makes them stronger, more resilient, autonomous.

My GP surgery has refused to provide me or Alf with the Flu vaccination three times now despite explaining the criteria that we fall under clearly.

Last night after getting of the telephone I did think that I would just pay for it, it would be easier, right?!

But this morning when I woke I thought how can I publish a post about advocating and then take the easy option. I have now downloaded the proof from leading charitable organisations the NHS website, (including the green book that the GP’s use to make these decisions) and telephoned CMT UK.

My next job is to forward this evidence to the practice manager to be reviewed… again.

Explaining to my doctor that our conditions fall under the category ‘chronic neurological disease’ or ‘hereditary and degenerative disease of the nervous system’ and why, and why our symptoms will become exacerbated if we catch the flu.  Even though a) they are medically trained and, b) we were both in the extremely clinically vulnerable category during COVID.

 

What Can you do?

When I advocate, I often take a breath, a pause, sleep on it if you can.  (Especially if it is an emotionally charged situation).

Ask yourself…

  • What can I learn?
  • What do I want to have happen?
  • How can I communicate that?
  • Is there any information I need from them?
  • Is their any information I need to share be specific)?
  • How can I follow up (or ask them to)?

 

What would your top three be?

Overcoming Imposter Syndrome – Journaling your feelings

Last week I spoke about Imposter Syndrome, you can read about it here - What is Imposter syndrome and Do I have it? The first step in overcoming Imposter Syndrome is to acknowledge what you're feeling, and why. Start by keeping a journal or writing down your thoughts...

How I Fake My Chronic Illness Symptoms

I fake my EDS symptoms all the time. Every day. For as long as I can remember. It is second nature, it's why I am so good at it.   Now I don't mean I'm faking the symptoms of my condition, making them up, exaggerating them, they are very real to me and they are...

8 Ways That Imposter Syndrome Shows Up When Have A Chronic Illness Or Disability

Have you ever felt like you don’t belong? Like any second now your friends or work mates will discover that you are a fraud? Do you ever think that your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and...

Managing Chronic Pain Without Medication

7 golden steps to manage your chronic pain I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away. I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, you can...

Join The Community

Chronically Empowered Women is a community of women who have chronic illness.

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In the group we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life. 

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

95 Things NOT To Say To Someone With EDS

95 Things NOT To Say To Someone With EDS

I bet if you have a chronic illness, especially one as misunderstood as Ehlers Danlos syndrome (EDS), someone somewhere has given you a piece of well meaning advice that hasn’t quite landed.

As you will see, even from well trusted medical professionals.

Unless you know someone with Ehlers-Danlos syndrome (EDS) or Hypermobility Spectrum Disorder (HSD) or have one of these conditions yourself you have probably never heard of them. Although the most common type of EDS, hypermobile type is not a rare condition, many medical professionals have very limited knowledge from their training, particularly about the multisystemic nature of the condition.  Other professionals, perhaps in the education system or the local health services may never have come across EDS/HSD before at all.

So as patients and parents of patients we have come up against so pretty funny opinions from professional about EDS. I don’t think in most cases that these comments that people have are supposed to hurt or do harm, sometimes people simply do not think before they speak. Often, people want to help, are trying desperately to help but due to lack of understanding they don’t quite get it right! And sometimes they clearly don’t get it at all and should probably keep their thoughts to themselves and seek some proper advice or education from someone who does.

A little while ago I was having a challenging EDS mum day I needed to know that I wasn’t alone in all of this so I asked some EDS friends and parents a question “What is the one thing that someone has said to you that has been so ridiculously stupid it has actually made you smile?”

I had an overwhelming response, some of the 95 things NOT to say to someone with EDS will make you laugh, others will leave you speechless or shaking your head in disbelief. What they will make you feel, I hope, is that you are not alone in this journey.

Please feel free to add your own in the comments. I’m sure that you will relate?

Sarah 🙂

 

1. Headteacher: “We need a date in writing from a consultant when your son will be well”.

Sarah Wells

 

2. Consultant: “We know she has hEDS but we don’t like to label them, is it because you want to claim benefits?”

Vicki Mayor

 

3. “EDS is a positive thing as you can be a great dancer or gymnast”.

Kirsten Crossman

 

4. CAMHS therapist: “The Doctor upstairs says Chronic Fatigue isn’t part of hEDS”.

Julie Mcgrory

 

5. A Paediatric Consultant Gastroenterologist told me that of course EDS doesn’t affect the gastric system and I was stupid to suggest it did.

Charlotte Saunders

 

6. GP Appointment: examination of my daughter says “Well your very bendy!”

Grainne Sanchia Watts

 

7. My daughter’s GP (not her GP anymore needless to say!) when she was being denied a diagnosis and we wanted a second opinion, told her “Only people who are pretty much contortionists get referred to Hypermobility clinics”.

Tanya Beechey

 

8. Paediatric Consultant – “Don’t worry about it because you will grow out of it when your older”.

Kaz Temple

 

quote 'don't worry about it because you will grow out of it (EDS) when you are older' Kaz Temple

 

 

9. Last night at a college open evening, we explained the condition and ask about support, they told my son to practice walking across busy roads from now until September as they were sure it would help because (mom) is overprotective taking him to school by car.

Eleanor Speed

 

10. Put in writing by paediatric rheumatologist:  “Has EDS III but at least it’s not a serious one”.

Sandie Reid

 

11. Rheumatologist to my 15 year old “You don’t HAVE to click your joints the pain is just imaginary, if you go off and do something else you’ll soon forget about it!” Yeah right….. Lol

Deb Wood

 

12. (Otherwise lovely) GP to me after reading report from rheumatology/genetics diagnosing daughter with hEDS: “No I didn’t mean this kind of thing; I meant did rheumatology think she had any REAL problems?”…

Anonymous

 

 

 

13. This one was said to me not my kids by a rheumatologist: “EDS doesn’t cause pain and POTS is imaginary pushed through by an overly excitable Dr Gall!” I honestly just sat there open mouthed!

Kerry Brown

 

14. “Don’t over medicalise her condition”, from Paed Consultant.

Kirsten Crossman

 

15. “POTS is just caused by inactivity & de-conditioning nothing else”.

Kirsten Crossman

 

16. “You don’t look like you have EDS”.

Hayley Airzee

 

17. Oh and the GP “You know EDS is rare don’t you?” As if being ‘rare’ means she couldn’t possibly have it! Haha. x

Deb Wood

 

18. “It’s all in your head”.

Tasha Whitmore

 

19. Paediatric Consultant: “Go home and eat curry to manage your constipation”, to my child with dysmotility.

Julie Mcgrory

 

20. “You need sectioning, it’s psychosomatic all in your head”. When my bladder, bowel and digestion failed they started to listen. X

Louise Pearse

 

21. A psychologist said…. “She doesn’t have EDS, she was seen dancing all around the ward by the nurses”.

Anonymous

 

22. Psychologist: “Stop looking for a medical solution to your problems.”

Chris Watson 

 

 

23. Unconvinced rheumatologist to my daughter’s observation that she had met someone else with Functional Neurological Disorder: “You should choose your friends more carefully”.

Chris Watson 

 

24. Social worker to student support: “Do you have a risk assessment for pushing R in her wheelchair in icy weather?”. One week later, RISK ASSESSMENT FOR ICY WEATHER, “In icy weather everyone involved in looking after R should take extra care”. The list is endless 

Chris Watson 

 

25. Saw optician as daughter’s eyes (which are 90% made of collagen) had deteriorated and reminded her of EDS history only to be told “Oh is that like a virus or something that will be fine in a couple of weeks?”.

Anonymous

 

26. Paediatrician told me “Ignore her in pain, distract her and feed her fish fingers”.  2 years later she was diagnosed JHS 6/9, global weakness, had orthotics, physio and hydro to name a few.

Caroline Bailey

 

27. I had a doctor tell me my shakes (which I now know is a benign tremor) was because “I had Irish ancestry and they had it hard during the famine!”

Wendy Marsh

 

28. “You can’t be in pain as you can move more than most. Here’s some antidepressants”.

Elaine Wyatt

 

29. “You can’t have EDS your skin isn’t stretchy enough”.

Kirsten Crossman

 

30. “Just before we get started, I don’t actually believe that EDS type three exists.  The others but not type three.”

Sarah Wells

 

31. Only had one comment from a GP which was: “How did you manage to get an appt in alder hey, he isn’t sick” in reference to the paediatrician sending him to the rheumatologist there.

Naomi Bannaghan

 

32. Rheumatologist to my 15 year old “You don’t HAVE to click your joints the pain is just imaginary, if you go off and do something else you’ll soon forget about it”! Yeah right….. Lol

Deb Wood

 

33. Unconvinced Rheumatologist to my daughter’s observation that she had met someone else with Functional Neurological Disorder: “You should choose your friends more carefully.”

Chris Watson

 

34. Oh another one to me rheumatologist: “I can’t see why the depo contraceptive injection is making you sublux more or give you more pain.” Baring in mind every time I was pregnant and through puberty I was suffering badly.

Elaine Wyatt

 

35. Orthopaedic to my daughter after a trampoline injury at school and the cold left her with mobility problems: “1) You didn’t dislocate your hip, you would have had to be hit by a car! 2) Stop resisting me, I know you can lift your leg and 3) You can’t have hydrotherapy today – you will drown!” this was ALL part of ONE CONVERSATION same day and he denied saying all of it at the CIN meeting!!!

Anonymous

 

36. I was told by a specialist hypermobility physiotherapist that: “Of course your hip isn’t dislocating – you wouldn’t be able to cope with the pain” 🙄

Charlotte Saunders

 

 

 

37. How about “I really don’t think your joints sublux as you would be in much more pain”  😫

Sandra McCallum

 

38. Health visitor: “I don’t think there’s any problem with her I’m more inclined to think child abuse and/or poor parenting… oh and her university goals? I mean really I think dole queue or wiping bottoms is more apt don’t you?”

Nybee Carter

 

39. I had been explaining to a physio about my then 2 year old waking in the night screaming with leg pain, limping and getting swelling at her joints… She then said to me “Do you think that maybe she is copying her big brother because he has joint problems?!” I replied well if she is, she needs an Oscar to perform like that, especially at 2am in the morning.  x

Kate Emery-Burns

 

40. From a cardiologist who wasn’t even my consultant the nurse just needed an ok for the tilt table. The consultant walks in and says oh is this the lady with eds. Looks at me all strapped to the table……… WELL you haven’t got EDS you’re not skinny and lanky!!!!!!!!!

Katarina-Gabriella Leake

 

41. “You are being bullied at school or controlled at home!!” – that was fun my normally gentle daughter told her where to go in no uncertain terms  😂

Wendy Marsh

 

42. “He’s not hypermobile – he only scores a 4 on the Beighton score.”  (He’s an 8 and professor Grahame laughed because the only non hypermobile joint he could find was his toes).

Jennifer Bear

 

43. We got a score of 10 from our knowledgeable rheumatologist which I thought was pretty impressive.

Chris Watson

 

44. “We are going to discharge you because there’s nothing more we can do for your 8 yr old son and you don’t want too many professionals involved do you!!!”  Said his paediatrician. I mean honestly. The boy is 8. Just because he doesn’t know how to support him.

Annelisa Neilson

 

45. The OT left a PenAgain pencil and a writing slope for my son then in year 2 to help him as his fingers and wrists were super bendy. After a week we went in to find the teacher had taken both off him and was going to send them back. Her reason, “the slope takes up too much space and his handwriting hasn’t improved at all so it was a waste of time”.

Naomi Bannaghan

 

46. Then there was my GP trying to refer me to a cardiologist for POTS as basic sit down stand ups in GPs office was very positive. The cardiologist said “They don’t accept referrals as POTS isn’t real.” So a rheumatologist decided to write in a report all cardiovascular events investigated and negative.

Elaine Wyatt

 

47. When I mentioned to my child’s rheumatologist about the new heading “hypermobility spectrum disorder” which was met with a blank face and the rheumy said to my child “Oh your mum even has a new name for what you have”.

Erin Devane

 

48. “I’d like to discount your previous diagnosis of HEDS and POTS and start again from scratch, looking first into Chronic fatigue syndrome! Because I think those diagnoses are questionable.” Paediatrician talking about my 14 yr old daughter who was diagnosed by Prof Grahame and since has had it confirmed by a further 4 consultant specialists and numerous OTs, Physios, A&E staff etc!!! Didn’t make me smile though, it made me cry for 2 days!!!

Katy Pascoe

 

49. Hospital registrar refusing an x-ray for a dislocated knee because if it was dislocated then her leg would be straight not bent as a person automatically straightens a joint when it dislocates. He then offered to pull it straight cos it was just cramp!!!!

Rebecca Jayne

 

50. Paediatrician: “You have a healthy child…stop looking for answers”. ….while my child held a puke bowl, had vomited just before the appointment, had a rash, had all over pain, couldn’t eat, couldn’t sleep and was diagnosed with shingles the NEXT day (after a visit to an acupuncturist…me NOT stopping to look for answers!!)…

Erin Devane

 

51. “All children are hypermobile”.

Wendy Marsh

 

52. I had a SENCO tell me that my son “Couldn’t have an EHCP because they don’t cover health issues”… umm I thought that was why it was called an Education and Health Care Plan????

Charlotte Saunders

 

53. “Don’t you think you daughter looks rather Downsy?” …. said when my daughter was 8 month old by a neonatal consultant at a check up !! I think my response was “err no… I think she looks rather daughtery but you sound rather nasty”.

Victoria Searle

 

54. Another time, while my daughter was writhing in pain with her stomach a doctor said “There’s nothing wrong with you hop off the bed, you can go home” when we insisted she had a scan, turned out she had a cyst the size of a tangerine! That was one embarrassed quack!!…. He was sorry I suppose but at that stage we had met too many doctors who had been rude and condescending.

Wendy Marsh

 

55. Don’t forget how he adjusted the seat higher before I jumped down 😂

Eleanor Lydwina Marsh

 

56. Orthopaedic surgeon to my 14 year old daughter 1 year before EDS diagnosis “You can’t dislocate without serious injury. Go out and ride a bike, that will sort you out”.

Rachel M Clark

 

57. A former head teacher in mainstream laughed when telling me my daughter was just naughty & wouldn’t conform. She also said she’d never get a Statement of Needs. My daughter was diagnosed ASD & Hypermobile, got her Statement & has gone on to attend an ASD school.   x

Debbie Summerskill

 

58. My 6 year old daughters Paediatrician didn’t know her Rheumatologist and physio diagnosed hypermobility EDS, when I asked why he hadn’t considered it he said she doesn’t look like she has it ( I counted to 10) then handed him the diagnosis in writing.  😬

Vanessa Gain

 

59. I  saw a physio with my daughter and said I was concerned it was EDS rather than hypermobility she said “Well do you watch coronation street? Izzy off there has EDS that’s EDS and clearly ur daughter hasn’t got that”.

Jane Pilley

 

 

 

60. When asking my child’s locum physiotherapist for advice managing chronic fatigue in my EDS, ME/CFS teen last Christmas.  “Just be positive, Merry Christmas”.

Sarah Wells

 

61. “There is nothing wrong with you, you are a normal, healthy girl” ….”Then why do my knees dislocate so often?”……”It’s very common in young people”…. “Nobody else in my school has this happen!”  😂

Anonymous

 

62. I went to the doctor on the advise of my physio who was concerned about my hip thinking I may have a tear inside so I explained to the doc the pain locking hip etc and his response was “I don’t no anything about your condition so I’ll have a read up about it and give u a ring”. Never heard from him again. Oh and he printed me off a leaflet on hypermobility in children. I’m 37. lol

Jane Pilley

 

63. Today GP stated she doesn’t know why my daughter would possibly need a wheelchair, despite being the person to refer my daughter to wheelchair services in the first place.

Kat Murray

 

64. “Sure EDS doesn’t cause tummy pain!”…psychiatrist.

Erin Devane

 

65. GP to my 14 year old daughter after 4 years of disabling joint pain when we requested to see a different rheumatologist as we suspected hEDS (her big sister already diagnosed). “You’re a fit and healthy young lady, I don’t understand why you would want this label” this is the same GP who googled POTS in front of us and was appalled at my suggestion of adding extra salt to her diet…

Sue Martin

 

66. The Senco in our first meeting said “There is nothing to worry about, my daughter was hypermobile and she stiffened up as she got older and is fine now”.

Naomi Bannaghan

 

67. My twin daughters teacher who is also the school SENCO told me my girls should take risks, they both have complex needs, including physical disabilities but apparently I’m an overprotective parent when I guide them while they climb slides etc.

Nula Jackson

 

68. Told my daughter had growing pains and when I mentioned the falls was told, “It’s just uneven ground!!”

Wendy Graham

 

69. To my son by a physio: “Hypermobility does not hurt and EDS is not genetic stop listening to your Mum as you’re worrying so much it’s giving you tummy problems.”

Elaine Wyatt

 

 

 

 

70. The reason I had my daughter ‘officially’ diagnosed was because I tried to ask a locum GP a question and got told I was an over protective mother who had too much time on her hands to Google things….

Belinda Isted

 

71. “She can’t have EDS, she would have had it since birth”.

Tania Bray
 
 
72. Deputy Head in team meeting where we were trying to reduce number of GCSEs as she had missed most of year 10 and was on 8 hours a week schooling: “She’s a bright girl, she can mug up on Maths in the Easter holidays”.

Chris Watson

 

 

73. When I see a new doctor, I tell them I have EDS and they reach out and pinch your cheek with a befuddled look on their face. You know that they have only read about it and the skin effects are the only part they remember! (I have only met one Dr. in my lifetime that had actually seen EDS before so I’ve had my cheek pinched an awful lot!)

Onale Thomas

 

74. “Oh, what party tricks do you have?”

Kaytee Marie

 

75. School Vice Principal questioning why a consultant and a physiotherapist had insisted on laptop use for what they said were the most flexible fingers they’d ever seen: “But we’ve even had children in wheelchairs who can write”.

Michele Morgan

 

76. That you can’t diagnose hypermobility in children as all children are hypermobile.  :/

Kim Neige Guillot

 

77. A teacher commented when we brought his buggy to collect him in year 1 as we had a mile walk and the last bit uphill was always a struggle on his knees, commented “I know you’re think you’re trying to help him but keeping him in a pushchair is just stopping him from using his legs and building up strength”.

Naomi Bannaghan

 

78. “Just wait until you get old.” That ticks me off the most. Your old and obviously functioning. I have had days in the bed incapacitated since I was 23. (now 47)

Tracey Scott 

 

79. My sons first teacher accused me of having Munchhausen’s by proxi. As he looks normal. Yeah I answered till he dislocates!

Anonymous

 

80. An orthopaedic surgeon telling me he could take a 100 people in off the streets and 5 or 6 could have the same neck issues show up on a scan but have no pain. Charged me over 200 euro and told me to get acupuncture. Left me nearly paralysed. Five years on and two surgeries later. Also same doctor told me I had Bursitis when I need a hip replacement.

Sylvia Kennedy

 

81. I had a doctor tell her “She can’t be that ill”  as he’s never had anyone in so much pain they can’t be touched – turns out her list of ailments and complications were taller than his height lol….

Wendy Marsh

 

 

 

82. This was said to me not my daughter, when an orthopaedic consultant was examining my joints. He got to looking at my hips, put my legs together with knees bent then proceeded to pull them both outwards till they were flat down on the examination bed on each side, he chuckled to himself, looked at me and then said, “gosh yes you are very flexible aren’t you – your husband’s very lucky isn’t he!” In a really pervy way, totally inappropriate and insulting and I couldn’t get out of there fast enough. 😡

Anonymous

 

83. My GP best suggestion for muscle cramps and joint pain was to rub coconut oil on myself….

Peter Powell

 

84. One of our previous GPs refused to refer for connective tissue disorders and was harping on about getting a formal diagnoses for autism, which we didn’t want at that time.

Old GP: if we can diagnose him with autism he will get lots of support from the LA for home education.

Me: I am a trustee of the largest home education charity in the country, I know what I am saying when I say there is no support for home education from the LA. I want Marfans eliminated as it is a life limiting condition.

Old GP: Oh yeah…he does show signs of that… I will refer you then.

He initially referred us to haematology!

Abbie Green

 

85. A physio said “I refused treatment” and refused to treat me again as I said I’m allergic to chlorine (badly) and I couldn’t use the hydro pool. It’s all over my medical notes I’m allergic and set of asthma and burns skin.

Elaine Wyatt

 

86. “The pain you are experiencing is like when a soldier looses his leg but can still feel pain in it” from paediatric consultant.

Jane Pickin

 

87. From pain management clinic: “We don’t up doses in EDS patients”.  Because apparently WE don’t get acclimated like EVERYONE else who has ever taken pain meds consistently. OR because my pain can’t possibly be getting WORSE as I age and EVERY joint in my body is becoming riddled with osteoarthritis.

Jennifer Young

 

88. Rheumatologist “You don’t have full blown EDS as you don’t have the vascular type!”

Anonymous

 

89. Seeing a GP about ongoing pain and falls for my daughter and the first thing doc says is “What exactly r u expecting from this appointment u must want something cause u keep coming back”. Umm let me think.

Paula Hampton

 

90. Doctor: “You don’t have to worry unless it’s Marfans…”

Libby Listens Bassnett

 

91. GP: “I think that the BP monitor may be faulty – no one has results like that”.

Sarah Wells

 

92. At 14 I was diagnosed with Narcolepsy and very depressed. Doc – “What do you like doing”? Me – “horse riding”, Doc- “excellent,”. Looks at my mum, “she needs a horse” Mum ” yes of course, and I’m guessing the NHS will supply one”????  😂

Tanya Newing

 

93. My daughter has hearing loss from EDS and in 5th grade a substitute told her to take the chewing gum out of her ears… they were the pink molds for her hearing aids. Lol

The kids actually laughed at the teacher…

Amy DeWitt Marek 
 
 

94. My dd pead keeps telling me to buy a trampoline for her constipation. I am sure it would help but I am not buying one!

Tania Bray

 

95.  “Vascular EDS isn’t that serious”! ….pain specialist

Erin Devane

 

(First published on My Stripy Life December 2017.)

Add yours in the comments 👇🏻

 

The Top Three Things That Help Me Manage My Chronic Illness

Narrowing this list down to just three things that help me manage my chronic illness has been tough.  I've tired not to choose the top three things that help me manage EDS or CMT or even look at it through the eyes of the main symptoms but more through the lens of my...

Emotional Mastery In Chronic Illness… Lessons From Disney’s Frozen

What if the thing you really want is hiding right where you are afraid to look?   This week my daughter turns 12.  I am not quite ready to accept that she is ALMOST a teenager - my sweet little girl is turning into a bright and sassy young lady. For a birthday...

Overwhelmed? 8 Steps To Feel Calm And In Control When You Have A Chronic Illness

It happens to everyone no matter how many hours we have in a week, how supportive our families are or how great we are at delegating. Everyone. No one has there shit together all the time no matter how much  they pretend that they do. But when you are living with a...

I’m Fine… What the f**k does that even mean?!

I’m fine. I used to use this reply all the time when people would casually ask me how I was. Short, sweet and to the point, but what does 'I'm fine' even mean?  The dictionary would have you believe that I was feeling 'in a satisfactory or pleasing manner or very...

EDS And CMT One In Twelve Million

Does it make me special? One in 12 Million... the odds of having both hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), based on current prevalence! Some days it feels pretty special, let me tell you why. I’m not going to dwell on the...

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real. From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot.  If you have EDS or know someone that does these thing will sound familiar. But, do you know everything there is to...

The Top 10 Surprising Health Benefits Of A Cup of Tea

The great British cup of tea… I have to admit as I sit here cup in hand, I am slightly addicted.  Meeting up with my with my girl friends at the local coffee shop on a Friday morning wouldn’t be right for me without my nice cup of tea.  In recent years coffee has made...

Acceptance – Why it is so important when you have a chronic illness?

Acceptance in human psychology is a person's agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it.  In simple terms getting your head...

Managing Chronic Pain Without Medication

7 golden steps to manage your chronic pain I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away. I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, you can...

8 Ways That Imposter Syndrome Shows Up When Have A Chronic Illness Or Disability

Have you ever felt like you don’t belong? Like any second now your friends or work mates will discover that you are a fraud? Do you ever think that your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and...

Join Our Tribe

Chronically Empowered Women is FREE private Facebook community of women who have chronic illness… and there are loads of us with EDS!  

You may feel like no-one understands what it’s like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may just feel a little uncertain. In The Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life. 

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

Evolution. Life After My Rare Disease Diagnosis.

Evolution. Life After My Rare Disease Diagnosis.

Rare Disease

 

When I put pen to paper (or fingers to keys) I did not know what I was going to write, I had no plan or agenda. I just wanted to tell you what it has been like living with my conditions. It was 20 years ago when I was diagnosed with my first rare disease. 300 million people are living with a rare disease worldwide. There are over 6000 different rare diseases with 72% of them being genetic, and 70% of those genetic rare diseases start in childhood.

I have Ehlers Danlos Syndrome and Charcot Marie Tooth Disease which are both genetic and both started in childhood – although were not diagnosed until my 20’s and 30’s. But that is not the point of this story. Looking back on my life over the last 20 years since my first diagnosis I don’t recognise the woman I was before, or who I became in the beginning.

I have evolved. This is my evolution.

 

Mother and daughter zebra standing facing each other with their heads touching (as if they are hugging)

 

Evolution

 

I never understood why people wrote in diary’s and documented their life when I was younger, I saw it as a complete waste of my time.  Plus, I would NEVER want anyone to find them and read my inner most thoughts and secrets, they were safer in my head for sure.  The parties, the people, the outfits, the hairstyles, the things that I thought were a great idea at the time… things that I’m glad were a phase.

Those times were fun but I am happy with the blurry half memories of the good bits and the laughter.

Then in my 20’s after I had not long given birth to my first child, in the midst of the hormones, the tiredness and a carrying around a body that decided not to work I was diagnosed with Charcot Marie Tooth disease.

My life as I knew it changed that day.

The outside world never saw it… I think that I hid it well? But right there in that moment I only really heard the words progressive, hereditary, incurable.

Who was I now? What did this mean? For me, my baby, my husband? Would he leave me? I wouldn’t blame him. Would I have more kids? Should I? When would I stop walking? How much pain would I have? Could anyone answer my questions? My inner voice was on a constant loop, noisy, frightened and ineffective.

I decided to pretend that I was OK, I hoped that by pretending it would become my truth. But the worry of the future and the grief for the life that I thought that I would live was like a vice around my chest every day.  So much so that I couldn’t take a proper breath.

I felt its weight as a pressure that I had to fight against every single day.

I had surgeries, I got through them.  I had more kids and with each one and with time it got a little lighter but it never really went away.  I became a master at not letting it show and learnt how to share my space with it.

What all this did take was energy, and this really was a problem.

Fast forward another 10 years and I was a mum of three.  A good mum, wife, we had a nice house, a good car, I really loved my husband and he really loved me. Phew!

But most of the time I was tired, like wading through mud and I hurt A LOT, an overwhelming pain where I wanted to cry most days. Which just made planning anything impossible and generally living quite tough, or it certainly felt that way.

We knew that our youngest has something going on, she was 18 months old and despite trying hard couldn’t walk.  She was not lazy.  She tried desperately hard to keep up with her brothers but when she stood sometimes her feet would actually face backwards. So we took her to a top Dr at a top children’s hospital… we paid.

In that appointment we were told that ‘she was within normal limits’. We knew better. But what really struck me, almost like lightening from the sky as I stepped out onto the pavement from that hospital was ‘Oh! this is not going to be easy’.

In that moment I woke up. In that moment a fire ignited in me that started like a flicker but in time would become a furnace inside me, a fire that would expand in me and allow me to breathe fully again. In that moment my little girl didn’t just have a mum I became her cheerleader, her advocate, her person.

Not long after that I began to write. Not a diary, but about things that happened to us; dance shows, hospital visits, holidays, tests and all the diagnoses that followed. My writing became a way for me to process my thoughts and as I did this I began to feel again. This had been the missing piece.

Over the last 10 years to be able to cope with my life I had shut down. Because I was living in my head, I was not able to feel in my body – because to feel in the beginning would have been overwhelming, unbearable.  Shutting those emotions out was my way of keeping me safe, but when you shut out the sad, angry, messy emotions you also shut out joy, happiness… you stop feeling – anything.

Writing let me process my thoughts and know that they are just that… thoughts.  They are not truth.  I had a choice about how I viewed my world.  I could view it through shit tinted spectacles or choose to see it another way.  I chose to see things differently.

And this has been the magic.

This is where I took back control.

Slowly I went back to re-write the circumstances of my own diagnosis, story by story and looked at things through a new compassionate lens.

Mindset became my secret success hack.

As I dealt with the past my focus was only on the present and the future. We can get so caught up in what has happened or what might be and tell ourselves stories about what may or may not be true we stop seeing what is true. What is right in front of us. What we have.

The day I lit that fire was the start and writing added fuel to that fire, so did the love of my husband, my children’s laughter, my family, the broken health and education systems, a glass of wine on a Friday night with my best friend, my kids diagnoses’, injustice, the sunrise on a frosty morning, a cup of tea, great sex, my son getting sick with ME and all the goodness in the world.

This ignited my fire for life again… all the messy, f**ked up, emotional parts of life that are just that – real life.

I don’t know when it happened, I suppose it was gradual process, but the vice loosened its grip till one day it had completely gone and I hadn’t even noticed. It wasn’t like a switch that flipped or a conscious decision that I made just one day I thought ‘Oh that’s not a thing for me anymore’.

I’d found myself again and I was showing my kids how to love deeply, live freely and advocate like a MF tiger.

Looking back helps you to see how far you have come, living there is not healthy.

Celebrating that is empowering.

Life will never be perfect. That is life. In accepting that, there lies the freedom.

 

More Information

The National Organization for Rare Disorders (NORD)

Ehlers-Danlos Support UK

Charcot Marie Tooth UK

 

Are YOU ready?

 

Deciding that you are ready to strive toward your goals and take control of your life is one hell of a big deal.

Are you ready for the acceptance that brings you freedom, to stop shutting out your messy emotions that are keeping you safe, to be brave?

Let me introduce you to my signature coaching programme CHRONICALLY EMPOWERED – and we’ll customise it together just for you! (No obligation).

CHRONICALLY EMPOWERED WOMEN

 

Our private Facebook group is a safe place for women with long term, chronic illness or disability (or those who are carers of kids with chronic illness).

It is a space to be you, to be honest that you want more than this, to be honest about not knowing how to start. A place where we can lift each other up and support each other. Where you can share your story and where we can inspire each other with our wins.  It’s about understanding that life can be tough but also that we can do hard things. About recognising your own unique superpowers! Come and join us… we’d love to have you. 🙂

The Top Three Things That Help Me Manage My Chronic Illness

Narrowing this list down to just three things that help me manage my chronic illness has been tough.  I've tired not to choose the top three things that help me manage EDS or CMT or even look at it through the eyes of the main symptoms but more through the lens of my...

Emotional Mastery In Chronic Illness… Lessons From Disney’s Frozen

What if the thing you really want is hiding right where you are afraid to look?   This week my daughter turns 12.  I am not quite ready to accept that she is ALMOST a teenager - my sweet little girl is turning into a bright and sassy young lady. For a birthday...

Evolution. Life After My Rare Disease Diagnosis.

20 years ago I was diagnosed with my first rare disease, but this story is not just about diagnosis. Looking back on my life I don’t recognise the woman I was before, or who I became in the beginning. It changed me then allowed me to evolve, this story is my evolution.

Overwhelmed? 8 Steps To Feel Calm And In Control When You Have A Chronic Illness

It happens to everyone no matter how many hours we have in a week, how supportive our families are or how great we are at delegating. Everyone. No one has there shit together all the time no matter how much  they pretend that they do. But when you are living with a...

I’m Fine… What the f**k does that even mean?!

I’m fine. I used to use this reply all the time when people would casually ask me how I was. Short, sweet and to the point, but what does 'I'm fine' even mean?  The dictionary would have you believe that I was feeling 'in a satisfactory or pleasing manner or very...

EDS And CMT One In Twelve Million

Does it make me special? One in 12 Million... the odds of having both hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), based on current prevalence! Some days it feels pretty special, let me tell you why. I’m not going to dwell on the...

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real. From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot.  If you have EDS or know someone that does these thing will sound familiar. But, do you know everything there is to...

Acceptance – Why it is so important when you have a chronic illness?

Acceptance in human psychology is a person's agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it.  In simple terms getting your head...

Managing Chronic Pain Without Medication

7 golden steps to manage your chronic pain I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away. I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, you can...

Rare Conditions – The Importance Of Supporting Mental Well-being

Now more than ever before it is important to support both mental and physical well-being in people with a rare disease diagnosis. Rare diseases affect approximately 3.5 million people in the UK (Rare disease UK), a condition is considered to be rare if less that 5 in...
The Top 10 Surprising Health Benefits Of A Cup of Tea

The Top 10 Surprising Health Benefits Of A Cup of Tea

The great British cup of tea… I have to admit as I sit here cup in hand, I am slightly addicted.  Meeting up with my with my girl friends at the local coffee shop on a Friday morning wouldn’t be right for me without my nice cup of tea.  In recent years coffee has made an increasing dent in the British cuppa and around our table each Friday morning I am often the only one with a tea where latte, hot chocolate and cappuccino reign.

My relationship with tea is becoming  rather love/ hate recently.

It all started one Saturday morning, which is dancing morning in our house.  As we live closest to the hall the mums all pop back for a cuppa while the kids are in class.  It’s a win win, they get to dance, we get to chat and drink tea.  So I pop on the kettle and make our drinks and while chatting I carry a couple of cups through to the front room.   Big mistake, before I even have time to react I’m down, face planting the floor.  You’d actually be surprised how far a cup of tea actually goes when catapulted through the air!

In my house I’ve already ditched the kettle in favour of hot water plumbed in as wrist dislocations were becoming commonplace.  However I didn’t expect the wrist dislocation in Costa while I was sat happily minding my own business.  It caused me to spill almost my whole cuppa and scold myself in the process.  A switch away from a traditional tea cup to a take away cup was all that was needed, now I can use two hands and avoid getting wet!

When my dysautonomia symptoms are flaring a cup of tea can be both a blessing and a curse.  On the one hand it can be a little pick me up when my energy levels are waning but of the other the caffeine can also send my heart racing and a cuppa before bed is a definite no no as it can stop me from sleeping.  Decaf tea just doesn’t hit the spot.

But you can’t deny the satisfying hug of a warm cup of tea at the end of a long day or the problems that can be solved by simply popping on the kettle and having a chat.  The British have known for years that tea is the very lifeblood of our nation, but I’m surprised to learn the that this fact now seems to be rooted in science.  Studies have shown that tea can offer more than a simple caffeine fix with tremendous health benefits, all the more reason to keep drinking it I say.  So here are my top 10 reasons to drink tea every day.

Sign saying 'tea people'

#1 A Cup of Tea reduces the risk of heart disease

Tea can potentially improve the blood flow in the body, by widening arteries and reducing the risk of clots.  It also contains antioxidants called ‘flavonoids’, which may slow down the onset and risk of heart disease.

 

#2 Tea hydrates your body

Although water is the first choice to rehydrate the body, drinking a cup of tea may be another good option health-wise. Being rich in caffeine, tea provides you a rich and flavoursome source of water along with a wide range of nutrients.

 

#3 Tea prevents tooth decay

Believe it or not, a regular supply of tea can really strengthen your teeth and lower the risk of tooth decay. Tea is a great source of fluoride, which can bolster tooth enamel. The antioxidants contained within a cuppa have also been known to fight against bacteria and gum disease.

 

#4 A Cup Of Tea can make you slim

Some scientific studies have suggested that regular intake of tea (especially in the morning and before lunch) complements your weight loss goal. A cup of tea prevents you from putting on weight along with speeding up the burning of calories. If nothing else, it is less fattening than sipping on a soft drink.

 

#5 Tea boosts your memory power

Extensive research has shown that the combination of caffeine and L-Theanine, a naturally-occurring amino acid found in tea, improves reaction time and memory, while increasing focus and concentration.

 

#6 Tea fights against dementia

To stay sharp, even as you age, drink tea, as it is thought to lower the risk of dementia by acting through multiple pathways, including those of nerve synapses and blood sugar regulation.  Many scientists believe that certain types of tea such as green tea, can strengthen the function of memory cells in the brain.  No wonder why our parents and grandparents used to drink so much tea!

 

#7 A Cup of Tea protects against cancer

Some recent studies have recently suggested that tea drinking could lower your chances of suffering from cancer. Several reports indicate that prostate, mouth and breast cancer cases are much lower amongst those who regularly drink five or more cups of tea a day as compared to people who do not drink tea. Although research in this regard is just coming into existence, the anti-cancer property is attributed to the presence of antioxidants in tea.

 

#8 Tea may help lower inflammation

Active compounds in tea can help to lower levels of inflammation and inflammatory reactions. As we well know inflammation is connected to almost every modern ailment, including arthritis, metabolic syndrome, and depression. Inflammation can also cause you to retain water and look puffy, so a few cups of tea can help you look and feel thinner.

 

girl holding a cup of tea

#9 Tea is an anti-allergen

A Japanese study has found that the tea polyphenol, EGCG, may be helpful for reducing pollen allergies. Tea may also reduce allergic response through quercetin, a flavanol naturally-occurring in tea, which is known to mitigate histamine response.  Which may be great for those with Mast Cell issues.

 

#10  A Cup of Tea may improve your overall health

Tea drinkers tend to be healthier, which is proven in research too, as tea drinking correlates with better health outcomes.  You can support your health, including your skin and body composition, with as few as 2-3 cups per day of this calorie-free drink.  Just don’t add sugar!

What is your little pick me up? Does tea hit the spot for you?

 

The Top 10 Surprising Health Benefits Of A Cup of Tea

The great British cup of tea… I have to admit as I sit here cup in hand, I am slightly addicted.  Meeting up with my with my girl friends at the local coffee shop on a Friday morning wouldn’t be right for me without my nice cup of tea.  In recent years coffee has made...

8 Ways That Imposter Syndrome Shows Up When Have A Chronic Illness Or Disability

Have you ever felt like you don’t belong? Like any second now your friends or work mates will discover that you are a fraud? Do you ever think that your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and...

How I Fake My Chronic Illness Symptoms

I fake my EDS symptoms all the time. Every day. For as long as I can remember. It is second nature, it's why I am so good at it.   Now I don't mean I'm faking the symptoms of my condition, making them up, exaggerating them, they are very real to me and they are...

Overcoming Imposter Syndrome – Journaling your feelings

Last week I spoke about Imposter Syndrome, you can read about it here - What is Imposter syndrome and Do I have it? The first step in overcoming Imposter Syndrome is to acknowledge what you're feeling, and why. Start by keeping a journal or writing down your thoughts...

What Is Imposter Syndrome And Do I have it?

What Is Imposter Syndrome Have you ever felt like you don’t belong? Like any second now your friends or work mates will discover that you are a fraud? Do you ever think that your successes are attributed to luck, rather than our own skills or qualifications? Or, do...

Shoes

Shoes... shoes... shoes Shoes are a girls best friend, you can never have enough, they can make you feel ten feet tall, on top of the world. It's true for some, I once had a friend that would put on her heels on a Saturday night and would immediately lose a stone.Give...

Join The Community

The Thrive Tribe is a community of women who have chronic illness and is a great place for a cuppa and a chat. 

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life.

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

When you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

 

Acceptance – Why it is so important when you have a chronic illness?

Acceptance – Why it is so important when you have a chronic illness?

Acceptance in human psychology is a person’s agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it.  In simple terms getting your head around the cards that you have been dealt.

For many people who are dealing with a chronic illness the term acceptance can be tricky. If people are told by others to just accept their condition they can feel like they are being told to suck it up or to stop complaining. Which in fact if you think about it is the opposite of acceptance. These well wishers may be trying to help, but acceptance is a process that doesn’t just happen because someone suggests that it may be a good idea.

True acceptance involves, recognising your experience, accepting your reactions to it and working through them until you reach a point that you no longer want to fight or change the situation.  It’s alright to be angry, sad, or hurt by that reality, but the goal is to acknowledge the fact that there are some parts of your situation that you cannot change.

 

image of lady with a tear running down her face as she is processing the emotions involved in her chronic illness diagnosis

 

Accepting your condition

For me acceptance has been a journey that I have walked for nearly 20 years. When I was first diagnosed with CMT my life was completely turned upside down. The young successful adult that I had fought to become was no more.  I had a new baby, who I loved with all my heart, but my career was stolen by my dwindling mobility, I was struggling more than I ever had in my life.

I had two surgeries in quick succession and more planned. I was coming to terms with the fact that I had an incurable neuromuscular disease that was progressive with a 50% chance of passing it on to my child; coupled with the fact that the things that I had worked so hard for and that I felt defined my identity were being taken away from me.

A year or so down the line I thought that I had accepted this condition. What I could actually do was talk about the science behind it all with ease but I had not dealt with the emotions of it all and was still fighting myself to be an able bodied young woman and beating myself up about the career I didn’t have anymore.

It took two years, that and the third surgery to be successful for me to finally begin to come to terms with the diagnosis and accept what it meant for me, for my future and my now growing family.

Throughout this time I learnt to deal with the emotions that I felt, be it sadness, anger or anxiety by meeting them head on. In doing this I became more resilient and emotionally tough by allowing myself to feel what I was feeling helped me to move through it, and allowed me to turn my attention towards more meaningful things.

 

Accepting the implications for your future

Accepting the implications that my condition would have on my future was tough. I had it all planned out in my head – I had a first degree, had recently married the love of my life and we had brought out first home together, I was working hard in a job I loved and had been promoted.  Along came our first child and I envisaged working hard and having long summers away as a family. 

My body didn’t get the memo.  As it slowly fell apart so did my hopes and dreams for the future. I was unable to work and I began to question everything – if I wasn’t a teacher? who was I? 

What this actually gave me was a chance to step back and reflect on who I was and what I really wanted from my life. The inner work that is so important and often overlooked while we are pounding the treadmill, trying to have it all.  

The nature of chronic illness is that it is ongoing, and in many cases degenerative or permanent. Which means that your health can change at any time. So the process of acceptance can change over time as new symptoms may present and conditions progress further. Being resilient helps you to cope with these unforeseen circumstances.

When I had further diagnoses’ of EDS and PoTS ten years after the first, it was evident at this point that I had done the work. The process of acceptance that I had gone through before was replaced this time by relief and self-compassion. I was able to bounce back from these circumstances but also had a positive outlook throughout. I had learnt not just to handle the situation but how to.

 

Accepting the limitations that are now placed on your life or relationship

One of the hardest things has been to accept that I can’t do everything, that I have to manage my chronic illness’ as if they were a full time job, in order to lead a more normal life. To know that this has to happen, to admit that some things are hard for me and to know that if I try to do everything I will become ill, have more pain or not function for days.

I am constantly walking tightrope, if I balance carefully I may reach the other side unharmed, rush, plan poorly and I will most likely topple and pay for it later.

So, I have learnt to balance my life, management is the only option there is no cure or magic pill for my conditions.  For most long term conditions, even with medical treatments management is key to living well long term.

This has become so much easier for me as I have truly accepted my conditions and the impact that they have and will always have on my life. I recognised that I had little to no control over certain elements of my health made the decision to stop struggling against those. Validating, rather than minimising or rejecting my experience. I now honestly assess my condition, my options and my choices and place my time and energy on the things that I can control rather than those that I can not. And, I enjoy the freedom that comes from being in that position.

I slowly learnt that there is a time and a place to fight my illness but it is not 24 hours a day 7 days a week. Dropping the moment to moment struggle has been surprisingly freeing. I no longer fight constantly for it to be different, which has given me so much more energy to do the things that I love to do like meet friends for coffee or spend quality time with the kids.

I now make choices about my life rather than feeling like all the choices have been made for me.

Acceptance has given me back that control.

 

happy family enjoying time together after a chronic illness diagnosis

 

 

 

 

12 things that you can do today to help you to accept your chronic illness?

  1. Start where you are at right now – this is your journey.
  2. Accept that this is a process and due to the nature of chronic illness, (eg:- new symptoms or progression), the process of acceptance may change over time.
  3. Acknowledging that even though it’s not fair that you are ill, that it has happened, and you need to work with where you are.  Deal with your emotions head on.
  4. Avoid focussing on the good old days all the time, past is past – stop obsessing over “what if’s” and accept that this is the reality and you need to move on from here.
  5. Accepting that some of your past goals or plans may no longer be realistic, and allowing yourself to mourn this loss.
  6. Stop searching for a cure if evidence suggests one does not exist, and focus on managing & controlling your symptoms.
  7. Denial will not make your illness go away – you can accept that you do need treatment if your disease calls for it.
  8. Accepting that no matter how well you stick to your treatment, you do not have full control over your condition.
  9. Learn to adapt to adapt to uncertainty – flexibility will be your friend – have a destination but know that there are many roads that may get you there.
  10. Know that you are more than your illness – make plans, have fun, don’t compare yourself to others or your past self, grow.
  11. Accept that you may never have a satisfying answer to why this happened.
  12. Live.

Eating an Apple Metaphor

Acceptance is like eating an apple. 

You could be trying to lose a little weight or eat a little healthier, so instead of snacking on your usual slice of cake, you have an apple. You may “choose” an apple, but what will it be like to eat that apple? As you eat it, you start comparing it to the cake. With each bite, you’re thinking about how the apple isn’t as sweet, fudgy, and good as the slice of cake. Then, when you’re done, you eat the cake anyway.

Another way to experience eating the apple is to just let the apple be an apple, rather than needing or wanting it to be something it is not. Just notice the crispness of each bite, the juiciness, and the sweetness for what it is and not for what it isn’t, a slice of cake!

I believe that acceptance is the foundation for living well with a chronic illness, health condition or disability. And, by learning to just let the apple be the apple you will reach the stage in your chronic illness journey where you no longer want to fight or change the situation. 

This gives you energy and choices to manage your symptoms more effectively, evaluate what you want in the world and learn how to communicate better with everyone around you. Acceptance is often the first step in this process, where you commit to yourself and truly acknowledge who you are.  

Want to know more about acceptance and how I can support your journey to live chronically well >> lets talk 

 

 

 

Energy Vampires

Have you ever wondered how the people that you spend your time with are impacting how you think and how you feel? Who are the energy vampires in your life and what can you do about it?

Overcoming Imposter Syndrome – Journaling your feelings

Last week I spoke about Imposter Syndrome, you can read about it here - What is Imposter syndrome and Do I have it? The first step in overcoming Imposter Syndrome is to acknowledge what you're feeling, and why. Start by keeping a journal or writing down your thoughts...

How I Fake My Chronic Illness Symptoms

I fake my EDS symptoms all the time. Every day. For as long as I can remember. It is second nature, it's why I am so good at it.   Now I don't mean I'm faking the symptoms of my condition, making them up, exaggerating them, they are very real to me and they are...

8 Ways That Imposter Syndrome Shows Up When Have A Chronic Illness Or Disability

Have you ever felt like you don’t belong? Like any second now your friends or work mates will discover that you are a fraud? Do you ever think that your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and...

Managing Chronic Pain Without Medication

7 golden steps to manage your chronic pain I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away. I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, you can...

Acceptance – Why it is so important when you have a chronic illness?

Acceptance in human psychology is a person's agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it.  In simple terms getting your head...

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real. From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot.  If you have EDS or know someone that does these thing will sound familiar. But, do you know everything there is to...

EDS And CMT One In Twelve Million

Does it make me special? One in 12 Million... the odds of having both hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), based on current prevalence! Some days it feels pretty special, let me tell you why. I’m not going to dwell on the...

I’m Fine… What the f**k does that even mean?!

I’m fine. I used to use this reply all the time when people would casually ask me how I was. Short, sweet and to the point, but what does 'I'm fine' even mean?  The dictionary would have you believe that I was feeling 'in a satisfactory or pleasing manner or very...

Overwhelmed? 8 Steps To Feel Calm And In Control When You Have A Chronic Illness

It happens to everyone no matter how many hours we have in a week, how supportive our families are or how great we are at delegating. Everyone. No one has there shit together all the time no matter how much  they pretend that they do. But when you are living with a...

Join The Community

The Thrive Tribe is a community of women who have chronic illness.

You may feel like no-one understands what its like living with your chronic illness, that pain and fatigue are getting you down. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life. 

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

When you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

What are you waiting for!

 

Rare Conditions – The Importance Of Supporting Mental Well-being

Rare Conditions – The Importance Of Supporting Mental Well-being

Now more than ever before it is important to support both mental and physical well-being in people with a rare disease diagnosis. Rare diseases affect approximately 3.5 million people in the UK (Rare disease UK), a condition is considered to be rare if less that 5 in 10.000 people are affected.

I have three conditions that fall into the ‘rare’ category, Ehlers-Danlos syndrome, Charcot-Marie Tooth Disease and Postural Orthostatic Tachycardia syndrome. I was at the front of the queue when they were handing them out, clearly! I now have my very own ‘rare’ children and work to support others with rare or chronic conditions as an NLP coach.  It is safe to say being a rare mum is just part of who I am.

One of the things I hear time and time again from other rare disease patients is how hard it is to secure their diagnosis in the first place, often taking years, sometimes decades to find out the name for their collective symptoms. Can you imagine that? Really. Think about how long it has been since the COVID pandemic started, feels like forever, right? Stuck in limbo, not having the answers, wondering what the outcome will be? Trying to stay positive but really a bit fed up. Imagine that is your health you are waiting for the answers to, in limbo, not knowing and probably feeling generally rubbish and scared.  Even the experts don’t have the answers. And it isn’t just months, but for years.

 

Picture of a zebra with the text 'Do you have a rare condition? The importance of supporting mental well-being'

 

There are many reasons why this is the case.

Have you heard the phrase ‘When you hear hoof beats, think horses not zebras?’ In medicine, the term zebra is used with reference to a rare disease or condition.  Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions but many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions.

True in my case, it was 26 years after I was first hospitalised unable to walk before I got my first ‘rare’ diagnosis, and a further 10 before the pieces were put into place for the second and third.

Often conditions have similar general symptoms making it hard to pin them down, this coupled with the fact that doctors are trained NOT to look for the rare conditions in the first place makes diagnosis times even more lengthy.

Waiting times to get to get to specialist services is often long, between 3-6 months is not uncommon, often longer, and when you do get there you may then have to be referred on to someone else.

We are human, so sometimes the symptoms we present with may not be typical. As these conditions are rare and therefore not something that practitioners are seeing day in day out, not being the ‘text book’ definition just confuses and delays things further.

In my daughter’s case having two conditions caused a non-typical presentation, delaying her diagnosis. Even though she likely had the conditions that I had.

Most rare diseases are complex and chronic, potentially life-threatening and go hand in hand with reduced quality of life. There is no surprise that there is an increase of mental health problems reported in rare disease patients and their families.

There is often a small network of care available as the condition is so rare, where patients often rely of charities for support and information.  Many doctors that you see will never have heard of your condition, let alone treated someone with it, so you will have to become the expert in your own condition.

There is also the problems associated with the visibility (or invisibility) of many rare conditions which often leads to misunderstanding amongst medical professional, family and friends.

Many people have a real adjustment period after diagnosis where they will experience a range of emotions as they come to terms with what their condition means for them and their life.

In a recent report on the mental health effects of living with a rare condition, campaign group Rare Disease UK found health professionals’ attitudes played a major role. The findings showed that 88% of patients and carers saying poor awareness of their condition by health professionals had a negative impact on their mental health, while 80% were negatively affected by health professionals not believing them. Read more about how medical gaslighting can fuel this here.

With the physical and mental elements of rare conditions are so intertwined it is my opinion that care should focus on supporting people with their emotional well-being and their everyday lives, not just on the physical symptoms.

Due to the nature of rare diseases patients are burdened by persistent symptoms which impact their quality of life leaving them overwhelmed.  If people are not supported, then this can lead onto anxiety and depression.

I believe that early support is vital. Support to manage the emotions surrounding diagnosis and acceptance and help developing a toolkit to manage their symptoms and overall wellness.  With flexibility, strength and resilience you are able to cope with the curve balls that your health will inevitably throw at you.

To learn to work with your illness not against it.

quote 'you need to learn to work with your health not against it!'

This view is echoed by baroness Blackwood the minister responsible for rare diseases, she has been lobbying to raise awareness after her own experiences during a 30-year wait to be diagnosed with Ehlers-Danlos Syndrome (EDS).  “Early diagnosis of a rare condition is extremely important. Not only does it end the often very stressful and exhausting diagnostic odyssey for a patient, it also means they can get the support they need much earlier, including for their mental health. We want to see a more holistic approach where treatment for mental health conditions is more closely integrated with the rest of a patient’s care.”

Patients that have had to fight hard for a diagnosis have often had to fight for the justification from professionals that their symptoms are physical and real. They may be reluctant to accept any help for their mental wellbeing. Either they feel they have come this far on their own so they don’t need professional support or they are firm in their beliefs that no-one is going to tell them it’s all in their head. Either way people that would truly benefit from support to process their emotions and thoughts surrounding the impact that their health condition has on their life and move forward positively, will likely refuse it.

This year the NHS has been stretched, at points often beyond capacity so while we are making progress on this in the UK I anticipate that it will take time leaving rare disease patients in limbo.

Coaching can bridge the gap in this service.  For pro-active patients willing to take control of their wellbeing a good coach can provide a non-judgemental space to explore emotions and ways to deal with issues that are stressful, frustrating or overwhelming. To help you to focus on what you are still able to do, rather than what you’ve lost and work with you to with you to identify and pursue new interests which will give you a sense of purpose and meaning. Sometimes, what you need more than ever is someone to support you with your medical team, helping you to prepare for appointments, ask the right questions and to understand what they tell you.

A coach is all these things and more and often obtaining this kind of support at the right point in the journey can mean that accessing mental health services further down the line may never be needed.

I love to talk about coaching and I am super passionate about advocating for rare and chronic conditions. If you want to have a conversation about how this may help you please book a call.

The Top Three Things That Help Me Manage My Chronic Illness

Narrowing this list down to just three things that help me manage my chronic illness has been tough.  I've tired not to choose the top three things that help me manage EDS or CMT or even look at it through the eyes of the main symptoms but more through the lens of my...

Emotional Mastery In Chronic Illness… Lessons From Disney’s Frozen

What if the thing you really want is hiding right where you are afraid to look?   This week my daughter turns 12.  I am not quite ready to accept that she is ALMOST a teenager - my sweet little girl is turning into a bright and sassy young lady. For a birthday...

Overwhelmed? 8 Steps To Feel Calm And In Control When You Have A Chronic Illness

It happens to everyone no matter how many hours we have in a week, how supportive our families are or how great we are at delegating. Everyone. No one has there shit together all the time no matter how much  they pretend that they do. But when you are living with a...

I’m Fine… What the f**k does that even mean?!

I’m fine. I used to use this reply all the time when people would casually ask me how I was. Short, sweet and to the point, but what does 'I'm fine' even mean?  The dictionary would have you believe that I was feeling 'in a satisfactory or pleasing manner or very...

EDS And CMT One In Twelve Million

Does it make me special? One in 12 Million... the odds of having both hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), based on current prevalence! Some days it feels pretty special, let me tell you why. I’m not going to dwell on the...

The A-Z of Ehlers Danlos Syndrome (EDS)

The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real. From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot.  If you have EDS or know someone that does these thing will sound familiar. But, do you know everything there is to...

Acceptance – Why it is so important when you have a chronic illness?

Acceptance in human psychology is a person's agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it.  In simple terms getting your head...

Managing Chronic Pain Without Medication

7 golden steps to manage your chronic pain I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away. I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, you can...

8 Ways That Imposter Syndrome Shows Up When Have A Chronic Illness Or Disability

Have you ever felt like you don’t belong? Like any second now your friends or work mates will discover that you are a fraud? Do you ever think that your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and...

How I Fake My Chronic Illness Symptoms

I fake my EDS symptoms all the time. Every day. For as long as I can remember. It is second nature, it's why I am so good at it.   Now I don't mean I'm faking the symptoms of my condition, making them up, exaggerating them, they are very real to me and they are...

Join The Community

The Thrive Tribe is a community of women who have chronic illness.

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life.

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

When you join the Tribe you can find your SELF CARE GUIDE FOR SPOONIE’S available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

 

Pin It on Pinterest

Pin It on Pinterest

LET'S CHAT