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

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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…

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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, 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...

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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 

 

 

 

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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, 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!

 

Managing Chronic Pain Without Medication

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 think of it as having wonky wiring.  I also have Ehlers Danlos Syndrome, a connective tissue disorder meaning in simple terms that the glue that holds my body together is too stretchy, like chewing gum. One condition is progressive the other multi-systemic meaning chronic pain and fatigue are common features in both of these conditions.

For generations pain is something that I have tried not to think about, to put to the back of my mind, to push through.  I had always been a high achiever, setting myself goals and working hard through school, university then in the world of work, there wasn’t time to bother with the pain and the limitations it placed on me.

As the years rolled by my ability to keep up this fight began to slip away, I was having more periods of chronic fatigue wiping me out for months and pain that would consume me.  It has not been uncommon for me to collapse, physically unable to put one foot in front of the other.  My health had already robbed me of me career as a teacher. Then in a gradual process, that to the untrained eye may even remain unseen, my life became more and more difficult. I never made it out in the evening with friends and even taking the children to the park for half an hour was a huge effort, everything revolved around the pay off and the pain that the task would bring and life began to get smaller and smaller.

I decided to fight back but in a different way, this was an active choice for me. It was only at this point that things started to change. Over the last ten years, in a slow steady process I have made positive steps to cope and to live.

Looking back I can barely recognise the desperation that I felt at that point in my life and the overwhelm that consumed me. I now see what that it is a combination of lots of elements that have allowed me to change and maintain that change over time.

 

 

Managing chronic pain without medication in 7 golden steps

 

 

 

1. Acceptance Lady with her head in hands due to chronic pain

One of the hardest things for me has been acceptance, my chronic pain is something that I would like to get rid of but I can’t, at times it has angered me and made me sad, reflecting I think that’s helped me on this journey. It is part and parcel of EDS and CMT and may get worse over time, I now accept this fact and deal with it. I view pain relief now as a form of control rather than it being a weakness. It is proven that mood and stress all have an impact on pain. So the process of acceptance involved becoming a master of my emotions and my thought processes and letting go things that are not serving me. With this my chronic pain has become easier to manage.

 

2. Let go of all negativity

I have learnt to let go of negativity.  Some people won’t understand the pain that I live with or how it impacts everyday on my life. This used to bother me a lot, especially when a family member didn’t have a clue and did not want to take the time to learn but would be quick to judge, dis-believe or offer advice.  Or when someone would give me ‘poor you’ sympathy when I know full well they really didn’t care. I can’t say that I am totally immune to their comments, I’m human after all but I am learning to let go and to focus on what is important, life is too short. You do not have a control over other people but you absolutely have a choice over how you respond to them. It strengthened my relationships with people around me that are important and allowed me to see which relationships were not serving me and let go.

 

3. Empowerment through learning

Empowerment came when I made friends with my illness. When I was first diagnosed I didn’t want anyone to know about it, I wanted to be normal, the same as everyone else. I went through a long grieving process. I grieved for the things I knew I would loose and where my illnesses would impact. This took time. Now I can talk to anyone about these conditions and enjoy sharing my experiences with others, EDS and CMT are part of me and that’s fine.

I have learnt about my conditions in order to manage them, reading, networking and attending conferences have all enabled me to understand why I have my symptoms and the correct ways to manage them, it’s made a huge difference. Facebook has been an amazing source of information but I steer clear of the ‘poor me’ Facebook groups about my conditions where people seem hell bent on competing to have the worst symptoms, as I believe that is not a healthy narrative. Where there is support, great… learn, take what you need and move on. You are more that your illness and spending too much time online in un-supporting environments can be counter intuitive.

 

4. Strength through exercise

I’ve got moving, I regularly attend Pilates classes, I brought a dog so that I have to walk every day (although as he ages and my knee is failing, neither me nor the dog can manage to walk most days) and I do resistance training most days even if it’s just 5 minutes. In the past I have driven to a Pilates class (on more than one occasion I might add), parked up outside and sobbed.  Part of me knew that I must push myself to go in, to get stronger, to get better but I didn’t have the energy to get out of the car and walk through the door, I would drive home defeated.

There is a balance to be found between being doing too much and doing too little, both are counter productive, it is important to build strength at a steady pace so that you can maintain it.  Slowly, the stronger that I have become, the less falls I have and the more confidence I have gained and I don’t visit that rock bottom place so much now. I feel proud of what I have achieved. When a trusted consultant reviewed my history and surgeries they were genuinely surprised at how mobile I was, that I should be pleased I was not using a wheelchair.

When you exercise, your body releases chemicals called endorphins. These endorphins interact with the receptors in your brain that reduce your perception of pain. Endorphins also trigger a positive feeling in the body, similar to that of morphine… so a win, win for pain.

 

5. Coping strategies

One of my friends commented how vague I am when making arrangements. She was envious at my laid back nature as she always liked to be super organised.  Now she realises that I am deliberately vague as I can never predict how I can be feeling from one day to another and that way I don’t have to cancel plans if I can’t make it. I type instead of writing, we have installed a zip tap so I don’t need to lift a kettle, I have two handled pans in the kitchen and I have a cleaner. I have developed these coping strategies without even realising it over time.

I have learnt to set boundries in my life without feeling guilty about it and to focus on what I need and want leaves me more time and energy for the people that I love. This new way of looking at my life took work, but ultimately I am showing my children that they need to value themselves too.

Don’t underestimate the power of lots of small interventions, they can make big difference.

 

6. Pacing, pacing, pacing

lady tired due to pain and fatigueChanging my mindset did not happen overnight.  I rebelled.  With a busy family I thought that the only way to

function was to push, push, push but I realised that it made the crashes more severe.  Feeding into the boom and bust cycle only serves to increase pain over time, once I understood this and could see the benefits that change could offer and it became easier to implement. Pacing my day activities to stop feeding into the pain is my most effective way to manage long term.

 

7. Focus on the good

Have you ever been buying a new car? You see that car everywhere don’t you? The same happens with your illness. The more focus you give to the negative elements of your condition, the pain, fatigue, the loss, what is hard for you now, the more you will see evidence for those things. The subconscious mind likes to send you evidence for the things that you are thinking about.

I try to focus not on what pain takes from me but what it has given to me, the relationships that have been strengthened, confidence, positivity, empathy and  my ability to not sweat the small stuff.

 

 To Sum Up

I love to give back, at first this involved writing and sharing our families story with the world @Mystripylife about living with these often mis-understood and under diagnosed conditions. I love to speak at events to raise awareness. The catalyst was always to raise awareness and make things a little different for my children as they grow and embark on their own journeys with varying degrees of symptoms from CMT, EDS, PoTS and ME.

This has grown into undertaking training as an NLP coach to support others on their journey and empower them to live chronically well. I give them the ability to laugh, to see the beauty in every day, recognise their needs and values and how they may have changed, re-discover who they are and what they love, find balance with their health, work, family and life and always know that whatever life brings happiness is a choice.

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