Getting stronger with EMSCULPT, the no-pain, muscle-building, fat-loss medical device*

*In collaboration with S-Thetics, Beaconsfield.

My husband is super-fit, works out most days with weights and the odd run. But although I have a chronic pain condition, I've recently done far more sit-ups in half an hour than he - or anyone - could ever dream of. Twenty-thousand to be precise.

While I let that sink in, I’ll admit, it wasn’t under my own steam. I've used medical technology for my abdominal muscles to benefit from the physical effects of the equivalent of 20,000 sit-ups and without actually moving myself.

Intrigued? Who wouldn't be?

Lack of body strength

In recent years I’ve found myself with a bit of a problem. I have a structural weakness in my back thanks to Ehlers Danlos syndrome, but repeated abdominal surgeries have decimated my stomach muscles, leaving me with a dangerously weak upper body.

The result has been regular episodes of my back giving way, with my weak abs leaving me crawling on the floor, unable to hold myself up. One recent, memorable incident meant my husband and son had to roll me, shrieking, onto a large drawing board to carry me to bed.

Something had to change - but my EDS and PoTS preclude me from doing sufficient - or really any - exercise. Even standing up still for long can be a challenge.

Then I came across something that changed my life.

Magical muscle machine

The answer was EMSCULPT. This miracle medical device makes you not only stronger but also slimmer in just four sessions of half-an-hour each. I was introduced to it by Miss Sherina Balaratnam at her multi-award-winning medical aesthetics clinic, S-Thetics, in Beaconsfield, Buckinghamshire.

I'm a huge fan of S-Thetics and have had a number of beneficial and life-enhancing treatments there previously.

This video I've put together explains what it’s done for me - and could do for you.

*I received this particular session of EMSCULPT courtesy of S-Thetics Clinic.

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Study indicates deconditioning doesn't cause PoTS, but has a cardiac trigger

A very small, yet enlightening medical commentary about Postural Orthostatic Tachycardia syndrome (PoTS) has recently popped up.

PoTS is often -erroneously- put down to the result of deconditioning - i.e, not doing enough exercise.
It's one of the things that people with the condition (including me) find most upsetting, the thought - sometimes spoken, more often just reflected in someone's face, that it's really all our own fault.

While PoTS can be as the result of many things, for example, a chronic pain condition such as Ehlers Danlos syndrome, its effects can be utterly disabling. It ends up as a vicious circle of not being able to exercise or even stand up through the symptoms of dizziness, fainting, chest pain or nausea (among others) and that makes it even harder to get up because you're weaker through lack of moving about. This is called 'exercise intolerance'.

This explanation may be given to patients in a dismissive way - sort of, 'You've let yourself down by being lazy so just try harder, get up and you'll get better'. But how do you do that when you can't stand up in the first place? And what was the trigger for those people whose PoTS came on suddenly, at the same time as the other illness (as in my case) or just by itself out of the blue? Deconditioning does not explain this.

However two doctors have written to the journal, Pulmonary Circulation, as a follow up to another study that sparked their attention. Doctors, Svetlana Blitshteyn, MD of Buffalo's Dysautonomia clinic and David Fries, MD of the Sands-Constellation Heart Institute in Rochester, both in New York State, analysed this study on low ventricular filling pressures as a cause of exercise intolerance and dyspnea. They believe it sheds some light on the causes of PoTS saying:

Previously, a low stroke volume and decreased cardiac mass in patients with POTS have been attributed hypothetically to deconditioning. This study provides the first objective evidence that low ventricular filling pressures in patients with POTS are contrary to what would be expected in deconditioned patients—high filling pressures.

The doctors commented that the study (although small) could be applicable to the majority of PoTs patients in that, "exercise intolerance in POTS is not caused by a lack of maximum effort from the patient but that low ventricular pressures occur despite the maximum effort."

If they're lucky, patients with an autonomic dysfunction such as PoTS have non-invasive (i.e, not surgical) tilt-table tests or other cardiac stress tests, ECGs and perhaps blood tests to diagnose them. Unless you can pay privately, in the UK these tests have incredibly long waiting lists on the NHS, during which time patients are becoming more ill. Many such as myself often need to use a wheelchair to even leave the house.

My Automonic Testing

My own story illustrates how difficult life with this condition can be and I do, in fact, consider myself lucky that I am not a young woman, just setting out on life. It also shows why compassion and understanding is far more required than telling someone they just need to pull their finger out and get on the exercise bike. I'm not saying that doing nothing is the right thing either, but a huge amount of support is needed, especially if you are young with little experience of life.

For me, the wait was 18 months before I got an initial appointment. Then, a further three months before I got the tilt-table tests. Then, incredibly, TEN months before I got the results of the tests. All during this time, life was very difficult. I could only walk short distances without having to stop and sit down or, if there was nowhere to sit, to bend down to get my head as low as possible.

Of course family life continued around me, with me feeling like I was less relevant, less able to participate and altogether more useless by the day. It was probably my own fault for not trying hard enough, of course. I tried dying, but I didn't even manage to try hard enough at that. What a slacker.

When I went back, I was given a trial of Ivabradine, which had a very positive effect. My GP however, didn't want to dispense it as it was off-label and the specialist letter hadn't yet arrived (and didn't for some time). After I become quite upset, my GP relented and made out the prescription. 

Although I was told by the Autonomic clinic I would get a follow up appointment in three months, I didn't get any letters until I received one discharging me, as I had apparently failed to attend! Like I would fail to attend after all that waiting! The letter had simply not arrived.

Despite explaining this to them and speaking to my GP and to my EDS specialist, they have not yet sent me another appointment and we are now more than a year after the results appointment. In the meantime, I have taken it on myself to double the dose as it appears no one else gives a stuff whether it's working or not, so I'll just do it my way.

The Ivabradine certainly isn't perfect - not by a long shot. But it does give me more ability to move around and I have worked to increase my strength. Of course there is always the knock-on of fatigue but I'm doing as much as I can, paying for one-to-one Pilates to try to recover some strength. It's not easy, especially as I am no 20 or even 30-something, (barely even a 40-something now) and it often feels like you get through one door only to have it hit you in the back and knock you flat.

Deconditioning a result, not a cause

In their letter about the study, the doctors reiterated how people's responses to patients with this condition can often make it worse.

"Patients often feel frustrated and blamed for their illness and a lack of improvement or recovery when they are labeled as deconditioned or told that they are not putting their maximum effort, regardless of whether they are exercising routinely as part of their therapeutic regimen or have not been sick long enough to become deconditioned.
"Deconditioning can occur secondary to prolonged bed rest and chronic inactivity in patients with POTS, but appears to be not a primary underlying mechanism. Larger studies comparing the invasive cardiopulmonary exercise tests in a cohort of POTS patients vs. sedentary healthy individuals are needed to further delineate the pathophysiology and possible therapy for POTS, both in terms of tolerated exercise programs and pharmacotherapy."

This last bit means they need to do more research so they can shore up the findings and come up with improved treatment of both medication and suitable exercise programs.

Getting upright again can be done, but it is a slow progression and patients need lots of support and the funding to pay for it. For example, hydrotherapy is great, but in the NHS it usually comes in blocks as it's designed for injuries, not chronic conditions and is in short supply. I had it and it was indeed helpful but I needed someone to take me and bring me back and a day to recover as it was so exhausting. 

In my own case, and that of many others, this study's findings seem to be self-evident. In EDS, the veins and arteries don't snap shut quickly enough in standing, so blood starts to pool in the lower extremities and the heart must work harder with less blood to keep the body going. Ergo, low blood volume.

A new role

I'm delighted to say that I have taken on a new, volunteer role as UK and Europe Advisor to the new Ehlers Danlos Society, which has been formed from the US-based EDNF. Lara Bloom, formerly CEO of Ehlers Danlos UK, is jointly leading the new charity and the aim is to expand globally providing trusted information of use to patients wherever they live. I'm happy to be involved.

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Disabling effects of PoTS shown in largest ever survey and how educating health professionals can help

Postural orthostatic Tachycardia syndrome or PoTS, is a complete bastard of a condition. It doesn't kill, thankfully, but it can quite often make you feel like you have no life in you.

It can be a condition on its own or a comorbidity of another condition, such as mine, Ehlers Danlos syndrome. 

In its extreme, life-altering state, it's pretty rare and extremely misunderstood. The charity PoTS UK, has teamed up with researchers and conducted the biggest ever survey of people - mainly women - living with the condition. The research, A profile of patients with postural tachycardia syndrome and their experience of healthcare in the UK is published in the British Journal of Cardiology.

It covered causes, symptoms and treatment options. You can find the whole survey here. 

Below are a few excerpts: 

Postural tachycardia syndrome (PoTS) is a recently recognised condition that usually affects younger women, who develop symptoms of orthostatic intolerance and a persistent tachycardia on standing upright. Healthcare professionals, patients and the national patient support group (PoTS UK) together created a survey, and the responses of 779 UK PoTS patients were analysed. The most common symptoms of PoTS at presentation were the triad of fatigue, lightheadedness and palpitations. Mobility, ability to work or attend education, and quality of life were significantly restricted. Cardiologists, followed by patients, were most likely to be the first to suggest the diagnosis of PoTS. Patients waited a mean of almost four years from presentation to obtain their diagnosis and, meantime, psychiatric mislabeling was common. Advice given to patients regarding lifestyle changes was variable, and those referred to specialist practitioners for help, found practitioners had limited knowledge about management of PoTS. Increased education of healthcare professionals and improved services for patients are recommended. 

And this is key. I find a little knowledge is a dangerous thing. If a health professional has heard of PoTS, their knowledge is usually incomplete and often based on faulty assumptions, such as, "Well your blood pressure didn't change quickly enough when you stood up so it can't be PoTs," or, "We did a 24 hour ECG and you were fine," despite numerous spikes in heartbeat of more than 30bpm when just standing or walking slowly up stairs (or half a staircase).

Treatments vary depending on if your symptoms are blood pressure or cardiac arrhythmia driven. For me, I have little blood pressure response, but my EDS means my blood vessels in my lower extremities are too stretchy to constrict quickly enough when I stand. This means blood begins to pool in my extremities, my brain tells my heart it isn't getting enough oxygenated blood and so the heart races to restore the flow. I feel dizzy, light-headed, pressure in my chest from a racing heart and nausea. It can continue for a while after I sit or sometimes have to lie down after the after-effects can linger for hours. On occasion, that's not enough and I have to put my legs in the air as well - tricky if you're out! If no chair is around, you'll see me bending completely over to try to even things out. So much for 'invisible illness'. 

The report says of PoTS:  

Diagnosis is usually made by active stand test or tilt-table testing. Few treatments for PoTS have been tested in randomised-controlled trials. Patients are initially managed with increased fluid and salt intake to increase blood volume, avoidance of symptom triggers (heat, prolonged standing, alcohol, drugs that induce tachycardia or hypotension), small frequent meals (low in refined carbohydrates), graded exercise (initially in a horizontal position) and compression garments to reduce venous pooling. Drug treatment can be aimed at reducing tachycardia (low-dose beta blockers, ivabradine, pyridostigmine), vasoconstriction (midodrine), boosting blood volume (fludrocortisone, desmopressin) or for their sympatholytic effects in hyperadrenergic PoTS (clonidine, methyl dopa).

My heart rate from 69 sitting to 151bpm 15 seconds later walking slowly half way up the stairs

Interestingly, 92% of the survey respondents were female and half had an additional diagnosis, like myself, of EDS. Many reported fatigue as one of the most debilitating symptoms.

Physicians call conditions like this 'benign' - i.e, you don't die from it. But believe me it feels anything but benign; it can be utterly life-altering and not in a good way.

As for diagnosis, many were wrongly told their condition was psychological or psychiatric- "It's all in you head, dear girl." Just writing that makes me extremely cross. And the least aware and the most important to educate? Your first port of call, the family GP. The report says: 

"In only 7% of cases did the GP suggest PoTS as a diagnosis. This may be due to lack of awareness in primary care about PoTS or the non-specific and multiple symptoms that are associated with PoTS. However, it is possible to undertake a 10-minute stand test in a consulting room, and perhaps this should be considered in patients with relevant medically unexplained symptoms or chronic fatigue, especially if there is a postural link to symptoms."

The impact of PoTS is considerable, with 23% becoming wheelchair users (including me, part-time for long distances) with 37% are unable to work. I am no longer able to be 'employed' but my time is used as a freelance writer, voluntarily with Special Needs Jungle and as a Trustee of Genetic Alliance UK. I am a 'real' Patient Advocate - I live it, and I work to help others. In other words, I don't do it for a living and I can't walk away into a better job when I fancy it. 

One of my first times out in a wheelchair in 2013

The most important recommendations in the survey report are education of health professionals and the need to improve accessible and relevant rehabilitation services. It's no good saying go away and do some gentle exercise when often even getting out of bed is impossible. 

I pay for a one-to-one Pilates instructor, who completely understands the conditions I have because she is similarly affected. Her career choice has kept her mobile (most of the time!). I'm aiming for the same thing, though it is often two steps forward and one step back; sometimes two back. I have been awarded a Patient Fellowship to attend the three-day European Conference on Rare Diseases in Edinburgh in May - that's a big goal to increase my fitness for!

But even now, three years on from the onset of chronic illness and pain, depression can flip on easily, from someone's unkind or careless word from someone - another battle to guard against. As a mum of older teens with both Asperger syndrome and milder EDS, I can't just think about my own needs. If it wasn't for my husband, I wouldn't be able to manage. 

Congratulations to Leslie Kavi of PoTS UK, named as a co-author of the report. Great work and hopefully this will be printed out by as many medical practitioners as patients. If you're a patient or carer, print the report out and pass it to your GP, physiotherapist, workplace if you have one or child's school or college. They're most probably too busy to find it, so help them out with their understanding. 

The survey has many more detailed figures and much more information. Once again, find the report here: http://bjcardio.co.uk/2016/03/a-profile-of-patients-with-postural-tachycardia-syndrome-and-their-experience-of-healthcare-in-the-uk/

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Can you help #careforLaura crowdfund fund life-saving surgery for Laura's Ehlers Danlos syndrome?

As you may know, since 2013 have been disabled by the rare disease (or rarely diagnosed disease), Ehlers Danlos syndrome. I've been at rock bottom and have, with the support of my husband, managed to drag myself to a somewhat precarious place where I can work a few hours a day.

Days out or meetings are always a knock back but I build the down-time in. I've know that I'm lucky to have got to my mid-forties before this genetic condition hit me with its full force.

Recently, I was put in touch with another woman who lives close to me with the same condition. Laura Sylvester and I met for a coffee in Farnham, where she told me her story. 

Laura is just 23 years old, beautiful, smart and determined. A lover of sports, Laura was studying for a Masters degree at Imperial College, London, when EDS took hold. She became so unwell she had to pause her studies and return home to be cared for by her parents.

Laura's condition has continued to deteriorate and her vertebrae are now so unstable, it's put her life at risk. She needs vital neurosurgery that is only possible from a particular surgeon. He happens to be in the US and so this is going to cost a lot of money. A lot of money that Laura and her family don't have. 

However, I mentioned that she is smart and determined, and so Laura has launched a crowdfunding campaign #careforLaura, to ask for people to help her reach her funding goal so she can have the surgery early next year. This will mean she will be able to resume her studies and, although she will still have EDS, she will have a shot of achieving her goal of becoming a geologist.

Here, Laura tells her own story:

Can you help #careforlaura?On 7th August 2014, I was diagnosed with a rare genetic disease called Ehlers Danlos Syndrome (EDS) with PoTS (Postural Tachycardia Syndrome). EDS causes the connective tissue throughout my body to be extremely stretchy and easily breakable - there is no cure for it. Over time, my muscles in my neck have become very unstable, which has further led to dislocation/subluxation of my vertebrae, disruption of my spinal cord ligaments, and compression on my cerebellar tonsils and brain stem.

Suddenly my life was flipped upside down and this degenerative muscular condition caused me to deteriorate quickly, forcing me to postpone my Master’s degree at Imperial College, return home, and be cared for by my parents.

Once an extremely sporty, sociable, positive and driven young woman, I have become tremendously vulnerable. I am in extreme pain, I wear a neck brace all day, and I am at constant risk of further damaging my brain stem, that would consequently cause me to stop breathing.

I am in desperate need of specialised EDS neurosurgery which will be done on 13th January 2016 in Washington D.C., USA. There are few experts in the world who can do this. The total of the medical expenses, travel and recovery is very high. I hope and NEED to raise at least £75,000 ($110,000) to fund this.

The surgery will create stability in my neck and stop the compression on the brain stem and cerebellar tonsils, essentially saving my life. This will enable me to carry on living my life as a normal 23-year-old, hopefully mostly pain-free and without the worry of causing further damage, which could otherwise prove fatal. 

Even though the surgery will offer me the stability that I need, unfortunately it comes at a cost of losing complete movement of my head and neck. Nevertheless, I am determined to adapt to this and begin fulfilling my dreams once again and resuming my Master's degree.

Any amount of donations and support for this specialist neurosurgery will be so tremendously appreciated, not only by myself, but also my family and friends. Please do consider contributing to the first major stepping stone that I need to live my life without fear.

22nd December 2015:

Laura is now within £5000 of her target - an INCREDIBLE achievement in just two weeks. Can you help push her over the finish line?

Click here to make a contribution, however small, it will help make Laura's Christmas fantastic and give her the chance of a New Year appointment with her surgeon!

Listen to Laura talking about her appeal and her EDS on Eagle Radio 96.4

Read their story here

For more information about EDS, visit EDS UK
For new stories about EDS, check out my Tumblr news site A Rare Diagnosis

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#SilentSunday - Fighting Ehlers Danlos Memory Loss.

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Sucked into the black hole of a rare disease

It's fair to say that my life has changed completely in the last year and a half.

Not just my day to day life, but also my hopes and my expectations of how life would be once my children left home - if they ever do.

I am blessed with not one, but three rare diseases, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia and an extremely rare eye condition called Punctate Inner Choroidopathy (PIC). 

I have endured constant pain, the inability to stand for long or to walk far, unrelenting fatigue and at times, like now, impaired vision with the added delight of having things floating in my eye that make me convinced insects are crawling near me.

I have cried and grieved and complained and felt sorry for myself. I have often contemplated whether it is worth continuing.  Sometimes it seems like the only point to staying alive is so that my children are not left with the burden of my no longer being here. I yearn to run away from myself.

But that's all on the inside, as invisible to onlookers as the illness itself. I have almost become four people. The one people can see, the one I am inside, the one that has accepted my limitations and tries to work with them and the destructive and overpowering me that will push forwards with my dreams, whatever the cost to my health. 

On the outside, I am the plucky trier, bravely battling on within my limits, finding ways to get things done, finding help and treatments. Helping others affected as best I can and continuing and expanding my special needs website.

Aren't I amazing? And I look so good considering everything! This is what I am told - I'm never sure if it's meant truthfully or if it's just to gee me up. Whichever, the words are full of good intentions and I am grateful for them.

But the daily irritations take their toll. The uncontrollable perspiration when I drink or eat something hot. Not every time; it likes to surprise me. The fatigue that creeps up like a car slowing to a halt as it runs out of petrol, while knowing I still have to get in the car to collect the boys from their school, five miles away.

And then there is my constant companion, the pain. 

The pain is multi-faceted. There is the all over body pain that begins to buzz, quietly at first when the Tramadol runs out if I have forgotten to take it, then quickly building into pulsing through my calves, my thighs, arms, fingernails. There is the joint pain, controlled by a different drug but when it has kicked in, it's hard to even pick up a cup of tea. Then there is the gastrointestinal pain of stretchy insides and now a new pain, a labral tear in my hip that is likely to need surgery. No drugs work on this pain.

Plucky me has joined Facebook groups, forums, charities because knowledge is power and helping others helps me feel less like an empty space.

But the worst pain is on the inside. The pain of feeling that I am letting people down. That I forget things I am supposed to do because of the medications; that I cannot do enough around the house and that falls on others; that I need to sleep when I should be being useful. That my husband spends the weekend after a hard work-week running around after the boys and fetching me cups of tea.

The emotional pain of wanting things to happen that are never likely to be possible. Relationships have changed forever. I have changed forever. 

But the me I cannot quiet is the one that still comes up with creative work ideas and plans that I really want to do, if only I had the energy. I push myself to make things happen at the cost of exhaustion because I am not ready to accept defeat. I am not willing to accept the truth of my new reality. I am not sure I ever will. This me is my downfall. 

She's the one that wants everything with no limits. The one with dreams who wants to be living and laughing. The one that wants to go places and meet people and have fun.  The one who wants to love and be loved passionately, absolutely, energetically. The one with hopes and ambitions.

I can't shut her up. I can't cram her into a box and sit on the lid until she suffocates. Her spirit is too strong, her heart beats too loudly but she is trapped in a body that will not comply; the body that has never complied if I am honest. The one that always got me so far before it collapsed from exhaustion while my brain failed to shut down too.

I am no closer to peace than I ever was. I am very good at what I do and I don't want to give it up despite doctors, friends, family telling me I must so I can cope.

But I can't. I want it all. I always will. So I will live with the grief because the truth and acceptance doesn't fit. It never will.

So if you love me, you'll just have to love me for who I am and the way I am. Flawed, sometimes flaky but maybe worth caring about. Maybe.

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Christmas, loss, love & friendship and hopes for a better 2014.

Ah, Christmastime, eat, drink and be merry. I said BE MERRY, damn you! Peace, goodwill and all that.

2013 has not been the most auspicious of years for me. Actually it's really been quite horrid, with an occasional hint of a bright spot that has just about made it bearable. One of those included speaking at MumsNet Blogfest, which was quite a large bright spot.

My Blogfest session Photo: Anna Gordon

I'm not a religious person, but I am spiritual and to help survive the bad parts of this year, I've been trying to listen more closely to my psychic intuition.

In fact, something I read by Wayne Dyer the other day has changed my thinking even more. Dr Dyer wrote in one of his many books, You'll See It When You Believe It, that we are "not a body with a soul, but a soul with a body."

This concept has helped me enormously after the death several weeks ago of my wonderful friend Gulshanah. I understand now that she is not gone, but simply released from a body wracked with disease and pain. This does not, of course, make it any less painful for her family and friends, me included, that she is no longer here physically, but I have a peaceful feeling that I believe comes from her. It was incredibly distressing to witness, but I did my best to be a good and supportive friend and she knew that I loved her and will continue to do what I can.

So, life has been tough for both me and for my husband this year. This time last year I was acutely ill. A year on, my Ehlers Danlos Syndrome & POTs has become chronic with increasing joint pain and I am a part-time wheelchair user. If it hadn't been for the support of family and friends, including Gulshanah, as well as online groups such as RareConnect, I am seriously not sure that I would still be here to write this.

Another misery of 2013 is that my husband was out of work for five months and while it was devastating for our bank balance, having him around to rely on to take care of everything, and me, gave me a chance to rest, although a return to health isn't yet on the cards.

The losses, of a dear friend, my health, and temporarily, of our family income, have meant 2013 has been incomparable in terms of the amount of stress being heaped upon our heads. And of course, there are always the inevitable challenges of raising two Aspergic adolescents through the hormonal highs and lows of their teenage years.

Despite my illness, there have been people who still did their best to make life even more difficult for me, but I have been fortunate to have friends, both near and far, who have been there with good words and kind deeds.

I have learned that you must never underestimate the power of love, friendship and kindness. It has literally saved my life this year. Support, whether via a hug, a kind word, a thoughtful email, Facebook message or a Skype chat, or just by bringing me a cup of tea during a meeting so I don't have to get up, has made a huge difference. Even someone just thinking ahead to make sure I can get where I need to be in my wheelchair makes a difference and means I don't feel like I'm a nuisance or in the way.

If you have a friend who has a long term illness, a better way to show concern is instead of asking how they are, show them that you care about them. Asking "How are you?", means I can either say, 'Fine' (which is not true) or just shrug and give a wry smile, because I'm pretty sure that you don't want a lengthy run-down of how I actually am.

I'm hoping for a much better 2014 and that I can be a good friend to my friends when they need me and be well enough to support my family.

Although, as I said, I'm not religious, I have found that a particular passage from the Bible, I Corinthians 13:4-8 to be precise, can help us all with caring for others. You don't need to be a Christian to agree with it, either.

It's about love, but it goes just as well for friendship. They are also words I try to live by, though not, it has to be said, with total success at times. After all, I'm only human and far, far from perfect.

If you are trying to be a better friend or a better partner to the one you love, perhaps let these words guide you too. Please don't look at your other half and ask them why they aren't like this to you; just try to be like this to them and see what happens.

c: NotAsAdvertised2013

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The vicious three headed dog of EDS, POTS & Chronic Pain

I'm writing this post as part of Ehlers Danlos Syndrome Awareness Month, with which both Youngest and myself have recently been diagnosed, along with Postural Orthostatic Tachycardia Syndrome (POTS) and Chronic Pain.

It's a fearsome triumvirate rolled into one, like Cerberus, the three-headed mythological dog that guards the entrance to Hades.

I'd like to write something positive about it but there isn't anything, as far as I can see.
In the last six months- in fact, I can now see it was building up for months before that- I have gone from being busy, capable and productive to feeling like a hollowed-out wreck.

I can no longer work a job as my health is too unpredicatable. I have to use a wheelchair to go further than a few yards, which embarrasses my kids, the rest of the time I need a stick to lean on. The simplest tasks use as much energy as a mountainous trek.

Not that I've ever been on a mountainous trek - I now know that I've always had EDS at a low level, undiagnosed, but I thought being low-energy, often dizzy and in a certain amount of pain was pretty normal.

Weak ankles? Slipped Disc and chronic back pain? Painful adhesions? Sore joints? Didn't everyone get this type of thing? You just had to keep going, didn't you, using whatever made you feel better. Which, in my case, is a glass of hot whisky. Sometimes two.

I'm a lifelong gym abandoner. I love the idea, but ten minutes in I'd get dizzy and nauseous so I'd eventually stop going. Now I know this is part of Postural Orthostatic Tachycardia Syndrome, a feature of EDS.

Still I got this far. 46 in a couple of weeks or so. 6th of the 6th (no surprise there, many will say). Married to a very, very understanding man. Had two kids, both, as you know, with Asperger's. I almost certainly have that too. There is some anecdotal evidence the two have some links.

Keep going. Don't give up. Move forward. One day at a time. It's how I was brought up, to just get on with it.

Six months ago, it all blew up in my face. Doing too much, an over-reliance on adrenaline to get through the day, gradually feeling like things were spinning out of my control. Trying to keep on top of everything. I wrote a post here about the Tumble Drier breaking and it being the final straw. I didn't know then how true that was and how that was just the start of my life crumbling catastrophically before everyone's eyes.

I didn't realise back in 2009, just how apt the title of this blog about a life 'Not As Advertised' would become.

I've tried to make adaptations. Put a brave face on it. Laugh at myself so people don't pity me or feel uncomfortable. Pace myself (ha!).

I did a few things last week: Spoke on an SEN panel, hobbled through parents' evening having to explain over and over why I need a stick. Actually I needed a wheelchair, but the venue was on two levels and I was too embarrassed to get it out. I knew it would be a hassle for everyone, so I made do with the stick. Went for dinner with the family on Saturday night, was quite cheerful.

Paid for all that by spending the last three days in bed on Tramadol. Which is usually followed by throwing up, but a period of no pain is worth one session of vomiting.

Everything I try to do takes at least double the time. Talking to people, whether on the phone, online or in person is exhausting, because I put too much into it. It's not the kind of thing you can pace, talking. So I avoid the phone. I avoid people. I prefer to message or email.

I open up my laptop and see many, many unanswered emails. Feel tired all over again. Decide to pace myself by shutting the laptop again.

I can still do some things easily: enjoy listening to music (what a life-saver Spotify is for me to find new things to listen to instead of getting stuck in a middle-aged rut. It's not overly social though as most of my friends aren't on it!).

I still write, though less, and I can still read, though for shorter periods.

I can do some things with help: Cook and do some things in the house (see this post)

Now I've got a disability parking badge, I can go to occasional SEN meetings more easily. But the fact that I had to apply for one in 2013 when in 2012 I was "flying" is almost incomprehensible.

I still have my boys and my husband. There are no words to describe how wonderful my husband has been and how bad I feel for being so useless in return.

I have a few friends and even fewer family members who manage to be supportive without being pitying, which I would hate. Those few people (who should know who they are) manage it perfectly. I'm sure they feel bad for me, but they don't treat me as a sad case and they allow me to feel I still have something to give to them too. This is important to me.

My kids, well who knows? Eldest has made no allowances. He doesn't like change and so is ignoring that anything has changed.

Youngest also has EDS and POTS and, like me, is still going through testing/treatment. Youngest was diagnosed first although I knew I had similar symptoms. It was only when they blew up in my face that I was forced to do acknowledge that this wasn't normal, actually.
I need to protect both my children and ensure they get everything they need. Ah, I still have a purpose, a reason not to give up.

But living for myself? That involves finding 'new ways forward', I have been advised.
I'm an old dog; not sure new tricks are my thing. Is the alternative worse? For others around me, yes. Not for me. For now, that will have to be enough.

Some useful links:
Join the RareConnect EDS Community
Join EDS-UK
Join The Hypermobility Association

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