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

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 chronic illness it adds ‘another thing’ to take care of, or not, depending how you are managing things.  And if the latter is more your style then feeling overwhelmed soon follows.  Not just the extra stuff it adds to your day but the emotional and mental energy that it takes to think about and manage.

I am much better at putting the steps into practice to calm overwhelm before it takes hold, but that has not always been the case.

When I was working as a teacher, or as a young mum it felt like it was part of me every single day. Like I was balancing on the edge of a cliff the smallest thing going to push me over the edge.

For me this was closely related to wanting to be all things to all people. A people pleaser and a perfectionist neatly rolled into one, I was also in denial slightly about my diagnoses’ and trying hard not let anyone see the cracks underneath the surface.

I wanted to be the best mum, wife, daughter, sister, friend, teacher, support to everyone else… to hide from the fact that I really needed that support.

I proudly put on my superwoman cloak every single day, but the weight of that cloak wore heavy.  My symptoms got worse, life got harder and I was NOT serving myself.  I felt tired, overwhelmed and out of my depth very often.

It’s different now.  Because I have learnt the steps to recognise overwhelm and have a first aid process at the ready.

These steps are designed to take you from meltdown to calm and connected.  Next time overwhelm strikes, take a deep breath and work through this list.  You will be back to feeling calm and in control before you know it.

 

 

 

 

Overwhelm first aid kit

8 Steps to get you feeling calm and in control

 

 

1.Stop

And breathe.

Take a walk, grab a cuppa whatever works for you but just stop and calm.

Know that it’s OK. With everything that’s going on right now it’s perfectly normal to feel this way.

 

2.Get It All Out

 

Do a big brain dump on a piece of paper, or in your favourite journal.

Get it all out.  Everything that is on your mind, the stuff, the conversations, the concerns.  Big and small.

The breathe again.  Feels better already, right?

 

 

3.Time to Ditch and Delegate

 

Now take the roll of your best friend or someone who cares about you. It’s time to cross some things straight off of your list, to make space for you to plan and refocus, let’s ditch:

  • Everything on your list that is out of your control.
  • Not urgent
  • It will never get done anyway

Now write a new list, its time to go through it and see where you could ask for help.  Put your best friend head on again when you do this, remember if the boot was on the other foot and someone asked you for help would you do it? it’s probably a yes right?

  • If everyone I asked would say YES what would I hand over?
  • If they could do it NEARLY as well as me what would I delegate?
  • What would free up time if I passed over now?

Now actually ask for the help. Make the call, send the email.

And breathe again.

 

 

4.Refocus

 

It’s time to really asses what needs your attention right now.  When you are caught up feeling overwhelmed it’s hard to see the big picture.  Sit back, take a breath and ask yourself:

What deserves my attention right now?

Where should I be focussing my energy?

What is important in my life?

 

5.Prioritise

 

Now you have worked out what is actually important to you it’s time to be ruthless.  What’s left on your list may need to get done but some of it will be more important than others.  Sometimes looking at it all laid out can be overwhelming so we are going to prioritise.

A – ABSOLOUTELY It absolutely must get done today

B – BE NICE It would be nice if this got done today, but tomorrow is another day.

C – COULD HAPPEN Could happen, today, tomorrow, the next day – no pressure.

 

6.Take Time For You

 

The most important thing, most often overlooked.

Don’t just dive into doing the stuff.  What ever you need to do.  Get some space, you will be more able to deal with everything when you return.

Grab another cuppa, go for a walk, phone your bestie, binge on Netflix.  Whatever works for you.

 

7.Tackle your list

 

Take a look at your list. If there are no A’s on your list,  amazing… have a rest It is is THE BEST thing that you can do for your body when you are feeling overwhelmed.

Then start with your A’s, work your way through your list on small thing at a time. With plenty of rest built in.  It is really important to find the thing that refuels you and build it in to your days.  This will sustain you way into the future.

 

8.Reward

 

Another step that is usually skipped.

That may be doing cartwheels in the garden (now I’m jealous if you really can do this), a mini break with your hubby, dinner at your favourite restaurant, a walk in the fresh air.

Reward yourself, you’ve got this!

 

What Do you find is the hardest thing when you are feeling overwhelmed? Does dealing with your chronic condition add another thing to your plate?

Let me know in the comments.  

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

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 well.’ as you will see below that was not always the case. 

But why couldn’t I be honest? Why do I still have to work on this? And, what was I scared of?

 

(These examples are all taken from real life.  A snapshot into our families’ life)

I’m fine.  I dislocated my knee this morning and sat on the floor for half an hour wondering how to get up and get all the kids breakfast before school, or if I would manage to drive to get them there, (big sigh). That means that I’ll miss coffee with the girls 🙁  So commonplace are scenes like this that one of my children didn’t move until the adverts of his favourite TV show to wander out to the kitchen to see if I needed anything.

I’m fine.  My wrist gave way as I lifted a pizza out of the oven for lunch, this made me catch the tray on the counter which in turn made me bounce the tray down my other arm leaving three lovely zebra striped burn marks.

I’m fine.  A cover teacher forced my son to participate in PE even though he communicated his pain, she didn’t believe him and joked unkindly that he should see a doctor (he’s seeing many). This teacher will never regain his trust.

I’m fine.  I can’t seem to take a breath today, it is shallow and fast as my autonomic system is struggling to balance itself.  I feel like I’m wading through mud.

I’m fine.  I stepped on a stone at the end of a really nice walk, literally 10 yards from the front door. I sprained my ankle and went over like what only can be described as a see-saw; ankle, knee, hip, elbow, shoulder in perfect succession, finally stopping as my face skimmed the floor.  Managing to cut open my leg through denim.

I’m fine. My daughter is screaming uncontrollably in a combination of pain, exhaustion and helplessness. After pain relief, a massage and a warm bath I can do no more to help her but to gently hold her and re-assure her that she’ll be OK.

I’m fine.  I fell twice out for a walk while pushing my daughter in her wheelchair. Today (well most days actually) walking without looking at my feet seems to render me incapable of staying upright at all. Two scabby knees and a cut on the top of one foot and I’m beginning to regret wearing shorts.

I’m fine.  We’ve spent the last 12 hours being sent across London from one hospital to another for emergency brain scans on our son after they found pressure behind his eyes and his peripheral vision affected, thankfully they rule out a mass. The longest… 12… hours… of… my… life.

I’m fine.  I get barely any sleep and when I finally get up I realise that a bone has subluxated somewhere in my foot.   Weight bearing is agony, actually, sitting is agony.  But the kids have an early orthotics appointment at the hospital, church services, school, so I brace my foot as best I can.  I manage to get a physio appointment 5 days later to manipulate it back into place.

I’m fine.  I learn that my child’s class teacher has decided (all by herself) not to apply her shoulder brace for the last six months in school, the very thing to keep her shoulder safe from a dislocation during play times and PE.

I’m fine. As I stood up in the middle of my Pilates class to change position from lying to standing the sudden pooling of blood in my legs and the inability of my heart to pump enough blood to my brain makes me come over hot and clammy.  As if in slow motion the room started to spin as I began to pass out.

I’m fine.  My son comes home tired, really tired to the point he can barely string a sentence together. I learn that his new teacher is refusing his requests for water in the afternoons even though the importance of hydration is clearly written into his care plan.

I’m fine.  Sometimes talking to my friends I feel like I live in a parallel universe as their lives, worries and hopes can feel a million miles away from mine.

I’m fine.  I had a wonderful day out with my family yesterday. Walking, laughing, picnicking, hey, we even managed a little dancing. Today, I am paying for my fun. Breathless, Potsy, my heart does not know what it is doing and I struggle to even sit awake on the sofa.

I’m fine.  I don’t know if I’m coming or going this week. School meetings to plan provision and care plans, more meetings to educate staff, reviews in physio, telephone calls to sort OT, I must call the EWO. Then on Thursday and Friday autonomic testing at the National Hospital that I’ve waited 18 months for (that I know will flare my POTS). Could I cancel? Should I??

I’m fine.  My daughter yelps every time that she moves in bed as her hip partially dislocates and I read her to sleep to distract her from the pain.

I’m fine.  I fell spectacularly into the Thames as I save my daughter from stumbling along a narrow bank. Spraining my ankle and doing something to my right arm that leaves me unable to hold a cup of tea, and we all know a cuppa fixes everything.

I’m fine. It’s my second migraine in three days and this one has really floored me. My arms are heavy my face is numb and I feel like a brass band are playing in my head.

I’m fine.  Today I practiced true calmness under pressure as my son went into shock after a bad break of his wrist BMXing.  I kissed him as he closed his eyes in theatre to manipulate the joint back into alignment and my heart broke a little.

I’m fine.  I’m on my way to Brunel University with the head of the Child Development Centre to present to a full lecture theatre of physiotherapists for an hour or so.  Everything that I need them to know as practitioners before they work in paediatrics, with children like mine. The last time I stood up in front of so many people they were all four and it was my Nursery Class.

I’m fine.  My rib is out, subluxated. As I drive to school to collect the kids I still can’t get it to relocate and as I stand in the playground making small talk it really hurts to breathe.

I’m really NOT fine.

 

I'm fine written on a piece of paper and pinned to a notice board

The three reasons that we say ‘I’m fine’ when we don’t mean it

I think I’ve worked some of it out… which is not to say that I have got it all sussed now, just that I’ve done my inner work and when I say ‘I’m fine’ now, quite often I actually mean it.

So what three things does it boil down to under the surface.

 

How we are raised

As kids ‘I’m fine’ is programmed into us as a way of saying your are OK, there is nothing wrong. If you fell over your parents would often say,

‘Oh dear, up you get, you’re fine’.

When in fact you probably didn’t feel fine at all, you were probably hurt, if not physically then emotionally.  But by saying you were fine you were being taught to dismiss how you were feeling in that moment.

So as adults why would we do anything else?

Avoiding Problems

We may also just want to be low maintenance and easy going, if we are difficult then that may lead to conflict so ‘I’m fine’ works a treat.

We may believe people won’t like us or easily get bored or fed up if we ask for too much or have complicated needs or feelings.

It feels safer to pretend we’re fine and be a dependable, cheerful, easy-going person who never complains or needs anything.

Avoiding Judgement

Pretending that we don’t have any problems or difficult emotions can also be a form of denial. We want the outside world to think that we have it all worked out and together because we are afraid of judgement from others if they knew the truth.  We may also deny our problems if our feelings may be overwhelming, because then we would have to deal with them right?!

 

Moving Forwards

The first thing is working out what ‘I’m fine’ really means to you, ask yourself these questions…

  • Is it true?
  • What does it mean?
  • What is it telling you about your experience with chronic illness and how you deal with it? 

Moving past denial, being honest with yourself and getting to grips with the messy stuff – what you really feel about your experiences and the truth about what your experiences actually are… will mean that next time that you say ‘I’m fine’ it may not be a lie.

 

I’d love to know what you think in the comments 🙂

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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!

 

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EDS And CMT One In Twelve Million

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 detailed science involved with hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), the genetics behind the conditions so to speak.  I may get into that all in a bit more detail at a later date.  I will try to explain what it means to live with them each day, why I might look fine one day and not the next.

 

CMT

 

Lets start here, CMT is genetic, it has been passed to me from my mum. We were unaware it was in our family until I was diagnosed after complications having my first baby. It is thought that around 23,000 people in the UK are affected.  I have a 50% chance of passing it on to my children. I have three children now, our youngest had a positive diagnosis just before her second birthday, one of the boys has a negative result and one hasn’t been tested as he has no symptoms… but it may still be there.

CMT affects the nerves in your peripheries, your arms and legs.  Our body’s system of nerves is similar to a network of electrical wires. Some of them, called sensory nerves, are designed to pass information back to the brain about what you can feel with your fingers, toes, legs and arms, etc. The others are command pathways, telling your muscles to do something, like lift your left foot – and are called motor nerves. CMT affects both these types of nerves so you can experience weakness and wasting in your muscles, numbness and sensory problems. In the type that we have in our family the myelin sheath of the nerve, the insulation, isn’t working properly affecting the speed of the signals getting through. This deterioration causes atrophy of the muscles in the foot, lower leg, hand and forearm.

The muscles in my feet have wasted significantly and I now have foot bone abnormalities including pes cavus feet (high arches) and hammer toes and I walk with supination (roll onto the outsides of me feet). My leg muscles are doing the job that the foot and ankle muscles aren’t – thankfully – and I am fortunate enough to be able to still lift my feet. It does mean I over work my hip flexors, iliotibial band and hamstrings to walk and cramp and pain wakes me often at night.

The muscles are wasting in my hands and my wrists are weak giving me problems with hand function and dexterity, they are often painful as they don’t have the muscle bulk to do the work that I ask them to do each day.  I also dislocate and subluxate my thumbs and wrists in a couple of places but EDS has a part to play in this.

CMT is progressive, it won’t get better or go away but it is not life limiting. When I was diagnosed I was a new mum and having a hard time getting my head round it all. My neurologist said to me at an appointment, “If I had to choose any of the hereditary neurological diseases I would choose CMT.” At the time, as I was grieving the loss of my future, I thought he was nuts! But he was right. There are much worse neurological conditions to have, he didn’t know at that time however I had EDS as well.

 

 

 

EDS

 

My EDS diagnosis came later, 10 years later.  At first we thought that CMT explained everything in our families weird and vast medical history but as time went on gaps showed. Rubie blessed our lives but as she grew developed the skills of a contortionist and we started to want answers to all of the unanswered questions circling in our mind.  It was recommended that I see the amazing professor Rodney Grahame before my foot surgeon would consider surgery, at this point I had been reading his books to gain answers to Rubie’s hypermobility, so I had half an idea what was coming 😉 After an hour and a half’s consultation I now had a shiny new EDS badge to wear. The missing pieces of our puzzle now slotted into place.

EDS is the term given to a whole collection of inherited conditions that fit into a larger group known as hereditary disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones, it is the glue that holds the body together. There are several different, distinct types of EDS, but they have some features in common, loose joints, stretchy skin and tissue fragility. I have hypermobile Ehlers-Danlos Syndrome. The exact cause of hEDS is unknown. The features suggest that there is a problem with connective tissues and possibly collagen. The condition appears to be inherited which suggests that there is a genetic cause. It is likely that there is an alteration in a gene, or several genes, containing the instructions for making connective tissue. This results in the connective tissue being less effective.

It leaves me with joint hypermobility, my joints having a wider range of movement than usual, they are loose and unstable, can dislocate and subluxate. This happens daily, this week cutting a slice of cheese I popped out my wrist and dislocated my ankle trying to pull off my jeans. It not uncommon for a sneeze to dislodge a floating rib. In my 20’s I would dislocate my knees on a daily basis with minimal trauma, walking into Regal’s (the local night club) on a Saturday night or turning over in bed. I had major knee surgery to realign things and tighten ligaments so it happens less now than before but is gradually becoming more of an issue again.  As my joints are less stable they are prone to sprains and strains.

I’ve had to make friends with the pain, it’s part of my daily life now. This can be ‘acute’ when I overdo things or as the result of an injury like a dislocation or ligament injury. It can also be a sustained persistent pain, this is worse for me when I am tired and I can feel like my whole body has been beaten. I also get a lot of neuropathic pain. I have learnt a lot about managing the pain I have. I’m a classic boom buster and pushing through my pain every single day wasn’t doing me any favours at all. Now I accept it, deal with it with medication, pacing and distraction and move on. My mindset plays a major part in my pain management as well as the CBT technique of pacing.

My proprioception is poor, this is my body’s ability to sense stimuli arising within the body, with regard to position, motion and equilibrium. To sense where ones body is in space. It affects balance and co-ordination. It is further affected by the sensory and motor nerves in my hands and feet being significantly limited.  I rely on my eyes for a lot, and now I’m well into my 40’s my eyesight needs a little support too!

There is a plus to all of this though, soft velvety skin. Many EDSer’s look years younger than their age. The downside is that I have mysterious bruises appear everyday, my skin marks really easily and my scars are stretched and thin. When I was in the pain rehabilitation programme at Stanmore  a few years ago and first met the girls on the ward they were shocked to hear that I had three children. I was actually 28 when my first child was born and was 38 at the time. Up until I was 39 I was asked how old I was when buying a bottle of wine in the supermarket. In my teens this would frustrate me, at nearly 40 I was quite flattered. There has to be a plus to this right?

 

 

Autonomic Dysfunction

 

One of the worst symptoms for me is the autonomic dysfunction that can go hand in hand with EDS. The functions that your body takes care of automatically, without you having to think about it. These manifest itself with feeling dizzy, faint, passing out, palpitations most often when you change position from sitting to standing. Other symptoms include difficulties in maintaining body temperature, shortness of breath and cheats pain, migraine, adrenaline surges, fatigue, hypoglycaemia, headache, blurred vision and brain fog and abdominal symptoms such as bloating.

These autonomic symptoms never go away they are always lurking in the background waiting to pounce. When they flare life is impossible, I have been in a position for weeks on end where I can’t lift my arm to brush my hair, talk without being completely breathless or stay awake for more than a couple of hours. I am very thankful that my autonomic symptoms flare up then settle down again. I have and a flare last for months in the past and it probably take a year to pass fully. Imagine living with it at that level daily, forever?  I manage my symptoms every day by drinking plenty of water and adding salt to everything, increasing my blood volume, keeping physically conditioned (which is easier said than done!) and some medication.  But key to living well with all of my conditions is to listen to the warning signs and stop before my body completely crashes.

The laxity of the connective tissue in the stomach and colon as well as the problems with the body’s autonomic responses can be responsible for many abdominal complaints, such as bloating, constipation and gastroparesis.  So to combat that I eat a wheat and gluten free diet and it helps relieve some of my gastro symptoms such as bloating and nausea. Small regular meals and medication help with the rest.

 

 

Fatigue

 

 

The fatigue can be relentless, I’m guessing that I am lucky enough to get a triple whammy of this from the CMT, EDS and autonomic dysfunction. Fatigue is a severe form of tiredness that exists despite a proper nights rest – or even a whole week in bed. Many people with EDS are diagnosed with ME or CFS long before their EDS diagnosis. This is exactly what happened to me, when no one could explain why 3 months had passed and I still couldn’t function I had am ME label put on me without being properly diagnosed or supported. Having a son now with true ME I can see the similarities but also the distinct differences between us. He has been much more sick for a much longer period with ME, with post exertional malaise (PEM) and cognitive symptoms, like memory loss, recall problems and concentration being the hardest symptom to manage long term (not ideal when you are studying for your A levels).

 

What Helps

 

Having a good attitude to having chronic illness helps. I’m not saying it’s always easy; when something pops and won’t relocate for days and days it’s hard, managing a family, school and hospital appointments on bad days is tough, being taken to court by the local authority because you are trying to secure an education for your teen that is too ill to get out of bed – you get the picture, it’s not all rosy.

The key to success? It begins with acceptance. You don’t have to be jumping up and down with joy that this is the situation for you but to accept that for today this is how it is – and not fight it.  You need your energy and it’s not to battle your situation 24 hours a day 7 days a week.

When you are in the depths of a new diagnosis and processing what that means for you and your future your mind is consumed with thoughts of illness and loss. It’s natural I get it. I’ve been there.  But your world can shrink in a heartbeat… suddenly all you are talking about and reading about is your illness and condition; the worst case scenarios, the Facebook groups full of people competing to feel the worst.

It time to get real, how will this make you feel? About your life? About your future?

Arming yourself with the right information, getting educated – that’s great – but getting lost in a black hole of sadness and self pity is not. There is a fine line. Be careful.

Live, re-connect to who you are and what you want. Has that changed? Great, in life the only thing that we know for certain is that things change. What do you want now?

Who are your people? Who lifts you up and brings you joy? Who drains you? Who believes you? Sometimes the people that are there for you 24/7 to give you all the love and support may be keeping you stuck – even if their help comes from a place of love. What and who do you need right now?

What can you do? A small step that can make you feel a little better? A little stronger? (no matter how small) Can you do it every day and keep the consistency going.

Can you answer some of these questions for yourself and think about how you could start to make steps today?

Mindset work and pacing has been key to me living well with EDS and CMT in my life, it’s why I am a huge advocate for it and why I help others in similar positions in my coaching practice. I know and see first hand the good it can do.

I combine a combination of wellness coaching, CBT, mindset and NLP techniques to get fantastic results form my clients. To help them to move from stressed, tired and overwhelmed to become strong and empowered, energised and confident – ultimately in control.

If you would like to talk about how working with a coach could help you book a call, it’s free.  It doesn’t matter if you qualify for the programme or not, during the call we can help you to get clear on what’s holding you back.

I’M IN – BOOK MY CALL

An Open Letter To My Charcot Marie Tooth Disease

Writing can help you to manage stress by understanding what’s going on in your mind + can be a healthy + intimate way to deal with your emotions about your health condition and what that means. I have always found the process extremely cathartic : here is a letter I wrote to my Charcot Marie Tooth disease.

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?

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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!

The A-Z of Ehlers Danlos Syndrome (EDS)

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 know about EDS?

When I was diagnosed I remember the Aha moments kept coming as more and more things from my past slotted into the definition of my shiny new diagnosis… like my narrow arched palate and local anaesthetic never working!

Please share far and wide!

Let’s make people aware that having EDS is far more than soft skin or loose hypermobile joints.

 
 
A is for adrenaline
 
B is for bowel and bladder
 
C is for connective tissue
 
D is for dislocation
 
E is for elastic, velvety skin
 
F is for fatigue
 
G is for genetics
 
H is for handle with care
 
I is for invisible illness
 
J is for joint hypermobility
 
K is for kyphoscoliosis
 
L is for local anaesthetic
 
M is for mast cells
 
N is for narrow palate
 
O is for orthostatic intolerance (POTS)
 
P is for pain
Q is for questions
 
R is for relaxin
 
S is for slipping rib syndrome
 
T is for TMJ
 
U is for unexplained stretch marks
 
V is for vascular EDS
 
W is for widespread symptoms
 
X is for x-rays
 
Y is for years to diagnosis
 
Z is for zebra
 
 
Do you have a loved one with EDS?
 
Share this post and get their opinion…

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...

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...

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 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!

 

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!

 

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