Too Expensive to Treat

This last week has been testing for me.
After finally having a referral sent to the Royal National Orthopaedic Hospital in Stanmore to see their specialist EDS team, I have come up against yet another wall.

Stanmore is one of the top places in the country for patients with Ehlers Danlos Syndrome. They have a team full of specialists who unusually know about, and manage those with EDS. Their books have been closed for years, and finally the doors have been opened for new patients, all of us in dire need of a team that understand and cater to our needs.

Last year, after 6 months of pushing and a formal complaint, I had a referral sent through to Dr Kaz-Kaz at the request of my cardiologist. Unfortunately as my GP surgery had point blank refused to send the referral, by the time it was sent out they too had books too full to take new patients.

I knew that there was a reason behind my referrals not being sent out, but at the time the GP appeared to be doing this out of complacency rather then anything else.

This week I called up Stanmore to find out the status of my referral when they told me it now has to come from a local rheumatologist rather then the surgery – I knew this could be an issue, but wasn’t quite expecting to hear the reasons behind this.

I called up the surgery and explained my situation. The reaction was a flat out no to a local referral, followed swiftly with an angry “Your costing us a lot of money”.

Yes, thats right – never mind the fact that I am a patient with the same rights for help as any other chronically ill person on their books – this entire continual struggle is fuelled by the surgery having me down as either a patient not worthy of help, or a patient who is too costly to bother with.

This type of comment seems totally unacceptable to me. Regardless of the cost behind treatment and referrals, it is not a comment to fling at a patient who is sick. It is not a comment I have ever heard those with other chronic illnesses mentioning – in fact I know several severely disabled people who have fantastic support from their GPs who put in the care that patient needs regardless – because they NEED it. Yet with in the EDS community it seems this is not an uncommon thing.

This illness that effects our every moment has a hugely detrimental effect on us. It steals away our ability to move about safely, it causes great pain and often leads to a point where we are physically unable to work. It steals our ability to eat normally, to sleep normally, to function socially or function at all. It causes heart problems, urinary problems, swallowing problems and severe fatigue. It causes so many issues that we become depressed and anxious. It can effect our lives so much that we literally can not function, and without treatment these effects are life long.

We may not be dying, but living with EDS that is not being managed intrudes our lives just as much as it may with a terminal illness. Every shred of our being is slowly stripped away – and all of this without the support of the medical profession.

Why is it that this is OK? Why are we the illness that everybody ignores and disbelieves? Money should not come into this when a persons life could be totally turned around with the right input – and with most other chronic illnesses this would indeed be the case.

I am exhausted of fighting the system. I have bitten the bullet in the past and gone privately for help, but unfortunately living on benefits doesn’t leave you with a lot to spare, and Stanmore won’t accept a private referral for their services anyhow. I do not need this continual fight on my hands when I am already sick, in pain and exhausted, yet I have no option but to carry on pushing hard if I want this referral badly enough, and I do. I want the chance to function again, to live again and to work again. I want the opportunity to learn how to self manage effectively and understand how to cope with my illness. I want a life.

This is all very difficult to remember when you are continually written off by those that should be supporting your needs. It is a very damaging way to treat a patient, and really does beg the question; Why am I so unworthy?
I feel lucky that I am mentally stronger then ever before. I can just about cope with this – it is healthily getting turned into anger rather then self hatred, but 2 years ago this would have had me on my knees and added fuel to the fire of depression, anxiety and PTSD. It scares me that there are so many other out there dealing with the same comments who may not cope with them so well.
It is not acceptable.

Living Alone with Chronic Illness

Living with a chronic illness is hard.
It effects every aspect of your life – from eating and sleeping to getting out and socialising. Every day presents new issues and a continuation of the same old struggles that intrude on every minute that passes.
I am tired of being tired. I’m tired of being in pain, and tired of feeling like every single job to do is a mountain that is hard to climb.
Every task is broken into parts – parts that I never even knew existed before my condition deteriorated. Having a bath isn’t just having a bath; It consists of running it, finding a towel, turning it off, undressing, getting into the bath, washing my body, finding the energy to get out of the bath, drying myself, taking the plug out and dressing. This one small task that usually takes minutes for most has to be split into 10 different parts and usually takes me the best part of 2 hours. Whats is more is the exhaustion that follows this can knock me out for half a day or so.

Its hard to explain why you can’t manage to cook or do the washing up, but if every task has to be split into bight size chunks, the energy and time needed for this far exceeds any that I have in a day.

For this reason, living alone has its perks.
I don’t need to feel guilty that theres washing up on the side, or that some days I don’t have the energy to pick up the dog toys on the floor. I don’t need to explain why I can’t join in with the communal cleaning day, or that I would rather paying a cleaner thus looking lazy. I don’t need to worry that my washing stays in the machine a few extra hours before I manage to put it out to dry, or feel bad that I am not up for work like every normal person is.
In a lot of ways its done me good – but there are also some downsides.

Sometimes I am desperate for someone to chat to in the evenings, and someone to share the cooking with.
Eating is a challenge when its hard to cook, and the energy needed for the washing up doesn’t seem worth the effort. Sharing a meal gives food a purpose, and I am much more likely to cook if someone else is about.
The extra challenge is managing food when every time you eat you feel ill anyhow. I struggle to swallow properly, and often end up feeling horrifically full after just a few bights of food. Each day is different, and feels somewhat unpredictable. Some days I manage just fine, but other days even water comes back up, and often makes me choke.
For someone who used to be anorexic its a very hard thing to balance.

Seeing people day to day is also a big challenge. I go days without seeing anyone when I’ve crashed after doing too much, and this can really effect my mood. Loneliness is a common feature in many of us with chronic health conditions, and I have yet to find the answer to this. I have lost contact with many of my friends, and there are few that understand that most of the time people coming to mine is the only surefire way of seeing me.
I find it hard to meet new people. In a body that doesn’t look nor feel like mine, I am embarrassed to introduce myself. Walking around with a walking aid has dramatically shifted the way strangers react to me. No longer am I a ‘normal’ pedestrian – instead people stare and give me looks of sympathy. Those that have the guts to talk to me treat me like some poor young person who has had bad luck to deal with, but this interaction is rare.
I hate this part the most. I want to look and feel normal. I want to be back to the person I was before things went down hill – but I know that this is no longer possible.

Living alone is great most of the time, apart from when it isn’t.
I am lonely, the house is a mess, and most of the time my head is too foggy to function. Some days it doesn’t feel as great as it should.

Another Day, Another Diagnosis

Yesterday I took yet another long journey down to London for another hospital test. This time around, I had the joys of a gastroscopy, which too be honest is not the nicest thing I have ever experienced – 6 hours nil by mouth may be tolerable if you live right by the hospital, but doing this along side a 2.5 hour journey was particularly unpleasant – I never realised how much I love drinking water!

I elected to have sedation as I am not a fan of feeling like I can’t swallow or breath, and judging by the bits I remember (namely choking), I’m pleased I did! They also took a couple of biopsies whilst down there, and again, the idea of knowing someone is taking a small chunk of my digestive tract isn’t something I want to be aware of while I’m unable to run away.

Sitting on the ward with a cannula in my arm felt odd. I don’t often consider myself to be ‘sick’, but each time I’m faced with a hospital test, it suddenly becomes real. I become painfully aware that these tests aren’t given to healthy people, and the number of tests I am in the process of having are certainly above the average for a healthy person of my age. This last year I have had far to many tests. Scans, an MRI, an echo, cardiac stress test, lung function test, 7 day halter monitor, numerous ECGs, tilt table test, a sleep study, 2 weeks wearing an actigraphy monitor, many hospital appointments, too many blood tests to count, and now comes the barrage of tests for my digestive tract and bladder. EDS really doesn’t let up. The worst thing is that I am fully aware that these are by no means the only tests that will come up in the near future as there are still other referrals to be sorted.

With every test comes the chance of yet another diagnosis, and this gastroscopy was not to disappoint. I have had digestive issues for so long that I forget it isn’t normal – recurrent issues with acid reflux, dysphagia, bringing up food (either undigested or partially digested), feeling sick every time I eat, bloating, pain, food intolerances, IBS type symptoms and only managing small amounts of food in one go before feeling like I’m going to throw up. I spent years trying to get help for it, but have repeatedly been told that its ‘probably just IBS’, or other equally unhelpful comments.

It wasn’t until I paid for that private appointment with a POTS specialist that these issues were taken seriously, and I after a long fight with my GP, I finally got a referral to a gastrologist.

With Ehlers Danlos Syndrome and POTS, gastric issues are common. A body thats too stretchy often leads to complications, and POTS is no better. Common issues include dysmotility such as gastroparesis, GORD, hernias and dysphagia, alongside issues with constipation, diarrhea, pain and cramps. To put it bluntly, its a whole bundle of fun.

I hadn’t really put much thought into weather they would find anything wrong during the gastroscopy – I think things have been belittled so often when I have gone for help that I had thought that there was nothing really wrong. If you spend enough time telling a patient that it must just be because they are tired/stressed/nervous then they start to believe it. I genuinely thought that perhaps everything was in my head rather then a real problem, and that these tests would only highlight this.

So after I came too, I headed into the nurses office who went through the exam. To my surprise I have a fair sized sliding hiatus hernia (and some damage done by acid reflux) to add to the list of weird and wonderful conditions caused by my faulty collagen!

The thing that has thrown me off most about this is that according to the nurse, this doesn’t explain a lot of the issues I have with my stomach, and so chances are there will be another unexciting diagnosis right around the corner. I have a couple more tests for these on the horizon, and it is safe to say I am looking forwards to these like a hole in the head.

Sometimes I think that I don’t really want to know what is going wrong anymore. I have a list of diagnosis fit for any 90 year old, and its scary to think just how many more may be added to the list. Ignorance is bliss as they say.

To add another spanner into the works, my blood test results for my thyroid levels have come back wrong for the second time – so no doubt that will be the next thing on the list to figure out.

For someone that looks so well, I certainly have a talent for being broken!

What I Wish I Could Say To My Doctor

Well its been a short while since posting, but as many of you know first hand, the life of a stripy person is never dull.

Over the last few weeks I have come up against the joys of the national health services again – the most tricky of these services seeming to be the good old general practitioners. Yes, thats right, those smiley happy (usually) pointless people that you have to deal with every time your health takes a turn.

In general, I tend to avoid going. Dealing with Ehlers Danlos Syndrome has taught me a lot – how to grin and bare it, how to put on a smile, and most importantly how to ignore the pain in order to find some way to get on with the life you should be having. Unfortunately, the biggest lesson I have learned upon the way is that seeking medical attention is more likely to leave you labeled with unsavoury terminology rather then give you any help in dealing with the symptoms that EDS creates.

If I could openly talk to a GP who I knew would actually absorb the information, there are a few things that I would like to point out to them, and today these have been brought into the forefront of my mind after yet another frustrating and pointless appointment. So – brace yourselves – we may be here for a while!

First and foremost I would like to make it clear that Ehlers Danlos Syndrome is a very real illness. It is not the stuff of legends, nor is it something out of a fairy tale. No. Ehlers Danlos Syndrome is an illness caused by faulty connective tissue. As a doctor, I would like to assume that this is a conceivable idea, and shouldn’t pose too many issues so far as forming some understanding of what may be affected. Most importantly, I would love to be able to assume that you didn’t get your notes mixed up in med school and come away with the idea that having said faulty connective tissue is not possible, and is in fact something only a hypochondriac would say.

Second, I would like to make it clear that we do not tend to frequent your consulting rooms for fun. Believe it or not we are people that do have better things to do with our time. Speaking for myself I can quite safely say that I would much prefer sitting in the pottery studio then waist my life sat in you’re waiting room. We live our lives in a lot of pain, and for the most part we tend to get by and get on with things without needing your continual attention.

So, when we do turn up, PLEASE LISTEN with open ears. Understand that we may turn up with new, worsening or scary symptoms. Listen and try to understand that there are many things that can go wrong when the collagen in your body is faulty, and that these really do need to be kept in mind before making a decision on the cause of things. It may look like a clear cut diagnosis, but unless you bear in mind that there is a pre-existing medical condition underpinning this, then you are likely to be barking up the wrong tree.
More times then not, we leave your office feeling that seeking help is a futile experience, and for me this has led to years of avoiding your offices at all costs. This is continually reenforced every time you refuse to listen, and pretty much every time it turns out that there was indeed cause for concern years later when I finally find someone who makes the time to investigate things properly.

Thirdly, understand that we are not drug seeking. You may look at the list of medication and think it to be unsuitable for a ‘healthy young adult’, but in reality you are not dealing with someone who is the picture of health. You are dealing with people who are in pain, who have stomach issues, urinary issues, depression/anxiety, POTS, joints that sublux or dislocate multiple times a day – to name a few. You are dealing with people that have so many systems in their body affected that it is very difficult to treat in almost any direction you can come at it. Yes, heat patches, stretching and a tense machine may be of use if your muscles are sore, but they really don’t cut the mustard when your hip refuses to pop back in for days on end. Mindfulness again may help you to calm your head and become mentally stronger, but not every symptom of ours can be controlled with this – I should know, I can tell you just how ineffective it is for intense pain from sitting in a service area balling my eyes out after attempting to use it to enable me to drive for another 3 hours that day.
Sometimes medication has to play a role.
I would love to be free from my tablets, but in reality these keep me at a level of being semi able to function. They dull some of the pain, they boost my mood, they slow my heart rate – they even help my stomach acid to stay where it should be rather then coming back up to my mouth. They are far from ideal, but they are often preferable, and even necessary.
So before jumping to conclusion that we are entering your office solely to gain access to your prescription pad, please understand that we would jump at the idea of never needing another tablet ever again if there was such a treatment available.
We are ill people with a very complex illness – we are not addicts.

Fourth (and I can’t believe I am even having to put this into words), you really need to understand that Ehlers Danlos Syndrome is not a ‘phase’ that we are going through. This is a genetic condition – and just like every other genetic condition you treat, that means that it is part of how we’re built. We aren’t going to wake up one morning with a body that suddenly remembers how to fix itself – our blueprints are wrong, and we have already been built. These symptoms aren’t simply going to disappear overnight, and many of them will sadly never disappear at all.
For some people (the luckiest of an unlucky bunch), they may not deteriorate too much – but for many of us, it is a syndrome that can cause long term and severe deterioration in almost every part of the body. Its called deterioration for a reason.
By telling us that we will ‘get better’, or ‘it will pass’, you are simply reenforcing our understanding that you ignore, diminish and don’t listen to us. You are making it crystal clear that our illnesses are not cause for concern, and therefore making it evident that we are unworthy of treatment.
The damage that this can cause is monumental. Not only does it make it harder for us to get treatment, but it can have horrific effects on a patients mental wellbeing.

Lastly be aware that we know our bodies far better then you ever could. After all – we are living in them. If we come to you for help, it is usually because something isn’t right, and isn’t our normal. You’re medical opinion is only useful if you take the time to hear us when we try to talk to you. You may suspect how we are feeling, but unless you actually take the time to talk with us about our symptoms, then how on earth can you make a decision on what is wrong?
We have bodies that suffer with chronic pain – therefore, if we are saying that something feels different, then it is extremely important that you don’t assume this is just what chronic pain feels like. We know what our pain feels like – we live in it day-in-day-out. If there is a new and severe type of pain, this really does need to be looked into just as you would for any other patient. Just because we have pain does not mean we can’t tell if things go wrong.

It is exhausting to be continually pushing for care, and extremely frightening to be ignored when you know that something isn’t right. We are the experts on our body, and more often then not, we often have to become the experts in our own condition. It would be a much easier ride for those with unusual conditions if doctors could accept, learn and work with us, rather then assuming that they know everything. They are only human after all.

Experiences with the DWP

Over recent years the benefits system for those with health problems have come into focus many times. The way conditions are being assessed are getting more and more difficult for those applying, and many peoples benefits are being reduced or cut.

I have been on the receiving end of these assessments, and they have been extremely traumatic experiences. I have often come out of those appointments feeling angry, upset and even embarrassed.

With an illness such has Ehlers Danlos Syndrome, one of the major difficulties is that the assessors have rarely even heard of it, and that we all look so well. In my last assessment for PIP the assessor turned round to me and even told me that ‘Ehlers Danlos Syndrome is just a fancy name for joint hyper mobility”. This is totally wrong, and it was said in such a way that I was made to feel like I was lying my way onto sickness benefits.

EDS Hypermobility-Type is the diagnosis used when the joint pain and hyper mobility coincides with other comorbidities. These conditions include (but aren’t limited to) illnesses such as POTS (autonomic dysfunction), digestive conditions such as gastroparesis and dysmotility, urinary conditions and many more that often impact hugely on a persons life. NOT just because we are attention seeking and trying to make the illness look worse then it is.

Being an almost invisible illness, and the fact it makes your joint too mobile make getting a PIP assessment even more difficult. The questions surround things like range of movement: and funnily enough they only focus on people with a severely small range of movement, not on people that move too much. Things like – can you put your hands behind your back (which for the record, if a shoulder has subluxed the answer is no) don’t take into account the fact you can do these movements too easily, and often cause pain and damage in the process. Being hypermobile causes all sorts of issues that non of the benefit question take into account, an therefore it is very difficult to score points even tho these affect your day to day life endlessly.

In general the assessor was quite clearly doubtful of the issues I mentioned. He couldn’t really believe I wasn’t able to do things like prepare meals or wash regularly. He continually questioned me on how far I could ‘really’ walk, and tried to catch me out on a number of occasions – including following me out of my appointment and watching for some time just incase i danced down the corridor after it was done.

One of the worst parts of that assessment was the refusal that I had ever suffered from Anorexia. Having been on high dose steroids for some months, my weight was at its highest which I found very difficult to manage. When I and the person I was with mentioned that I often need prompting to eat still (particularly if I am low or stressed), he told me that my eating disorder was binge eating disorder – ‘your fat, you obviously binge eat’ and ‘It wasn’t anorexia was it, its binge eating disorder, you clearly eat to much’. Regardless of all of the letters he had right in front of him, the proof of my steroid dosage, and without caring about the effect that his comments could make to someone in recovery of a long standing eating disorder, he carried on pushing the point and made me feel like a big fat liar. This was also followed with the dismissal that PTSD, depression and eating disorders are all separate issues – he skipped over all 3 telling me they were the same thing.

The behaviour in that one assessment alone gave me the absolutely clear picture that disabled and ill people in this country are guilty until proven innocent. We are all labeled as ‘benefit scroungers’, and this is a view point that is handed down to everybody in this society by the government who should be looking after us.

I also had to undergo another assessment for ESA and this was no better. The woman was nice enough in the room, but after the findings were written down it was another story. The lies woven into the 20 page document were unbelievable. Ranging from her examining my range of movement (funnily enough I don’t recall this taking place) and them all being at normal range, too the fact I could walk 45 meters in one go (slowly with significant pain from my hips popping out of place several times) obviously being proof that I would have no problem ‘repeatedly mobilising 50 meters’. Apparently I ‘didn’t look in pain so does not get pain’ and ‘didn’t look tired so does not get tired’. Issues of my depression were glossed over even tho I had spent 20 minutes crying, and many activities were written in as evidence I was doing enough to be working (all of which were false). All of the things I had told her were swapped around and used against me: unless you are actually brain dead and can’t move a muscle, I suspect this is the case for everyone.

It makes me angry and sad that this is the case in our country. It is the doctors that care for us who should be able to make the decision of weather we are ‘sick enough’ to warrant sickness benefits. It is nonsensical that we should be sent to people who have no understanding of our illnesses for a decision based on one meeting. Why should we be left to feel embarrassed and upset when we are already dealing with the effects our conditions have on us day in and day out?

I came out of the ESA assessment as a ‘lucky’ one. I was awarded the basic rate, but apparently I will be totally better within 8 months or so, and therefore should be fit to work a full time job by then. I would love to know exactly how this is possible with a genetic condition like this. Pass me the magic wand and I would be only too happy to be working as a functioning member of society.

The Reason I Speak Out

Recently I have had a few people telling me that I am ‘strong’ for talking openly about this. ‘Brave’ to publicise my illness, and that this sort of thing takes guts.

In all honesty, I do not feel any of these. Strength, bravery and guts come from being left with no other option. If I do not talk about my invisible illnesses, how on earth can I expect those around me to understand that I am ill? I have spent years getting angry, upset and frustrated with being continually labeled as lazy, but in reality what is there to go on?

I am young, I look fit, and I look healthy. I make the effort to go out, and on the days that I know I can’t bear the pain or exhaustion I hide away so that nobody has to deal with it. To the outside world I am not obviously disabled – I am normal.

The fall out from this continual cycle of putting on a mask for the world is that you begin to feel low. I have struggled with depression for over 11 years, medication has been a life saver, but it can’t do it all. In reality as much as I do need that medication, I also have to change to survive.


Recently my mood dipped again – its a deep dark world inside the head of a person with chronic pain and chronic health conditions. Who wouldn’t get depressed if life day in and day out was painful, unpredictable and lonely? Who wouldn’t get depressed when being forced onto a different path from the one you have worked so hard to be on? Depression is a very reasonable response to chronic health conditions, both physical and mental illnesses.

Although I am low, I have also been in this cycle enough to know that I will bob up again, even when it doesn’t feel like it. I put things in place to keep me safe, and I force myself to engage in the outside world. Sure, staying in bed in a numb state or crying for hours on end are the things that I want to do, but I also know it does nothing to help me climb back into the light. This particular time I have gone so far to remove any spare medication from the house. That was a massive decision to make, but I know it was the right one. I felt extremely anxious without them (oddly they are like a safety blanket to me – both for pain and depression), but with the temptation out of the way it has given me some breathing space from the darker thoughts that I was having.

I also had to find something to motivate myself. It used to be dance that I ran too when I was depressed. It was the most amazingly wonderful hobby in terms of my mental health. Any anger or sadness got ploughed strait into a class, and as my whole attention was focused on how to get better, it gave me some wonderful time out, no matter how rough things were. Unfortunately I am far from able to balance on one leg, let alone be jumping around a dance floor now, and when I started getting low, I was also hit with just how much I have lost.

I knew I had to find yet another coping mechanism, and thankfully I have found and joined up to what is effectively a community pottery studio. I have a code for the door, and can go any time. The place is filled with absolutely lovely people, and everybody has welcomed me. The clay work is therapeutic, but what is most amazing is the sense of belonging that I never usually have. They take me as I am, and I don’t hide myself away – I can spend my time chatting and creating and bonding to people – this is the gem that will pull me out of myself and back into the real world once more.

Depression for me is always followed by change because I literally couldn’t stay alive if I carried on as I was. It is not something that I will be ashamed of, and it is not something that I hide – it forces me to keep pushing myself upward when everything else is pulling me down.

This is not a choice though. Talking about this is no longer just an option. If I want to beat this depression, to cope with the pain and build a life with my illness then I absolutely have to explain the invisible to those around me.
It isn’t strength – it’s necessity.

Pain & Fatigue

I have often wondered quite where the pain/fatigue cycle started for me. It seems to be a little like the chicken and egg scenario. My high pain days seem to coincide with the days I am most exhausted, but weather thats because the pain tires me out, or the lowered energy levels give me less tolerance to my pain I will never know.

This particular cycle is tricky – particularly with EDS and POTS. In theory the more you can strengthen your body through appropriate exercise the better you’re body is able to keep its joints in place, and regulate your heart rate and blood pressure in an upright position. In effect this would mean a decrease in both pain and fatigue.

In the case of POTS this is largely things you can do lying down (no, not the one your thinking of), and in EDS it is exercise that will gently build up strength without putting undue stress on your joints.

In practical terms however, this only seems to work so far. Sure I am aware of these factors, but on days where it takes all of my strength to head downstairs (on my bum) to have a change in scenery, and struggle to work through the fogginess or push through the pain enough to get dressed, it feels absolutely impossible to get myself down to a swimming pool or off to a pilates class. On the days that I do push myself to do things (such as appointments or family gatherings) I am able to put on a good enough show, but the following few days are a living nightmare.

Having had a busy weekend, and 2 hospital appointments in London in the space of a week, I feel like a zombie. I may not look like I have an axe sticking out of my head, but I sure as hell feel like its there. My whole body aches, far too many joints have subluxed, and I appear to have a forcefield surrounding me ‘protecting me’ from any outside information getting near to my brain. It is on days like today that I begin to wonder just how on earth I can manage another 50 years of this.

Insomnia is another part of this cycle for me and many others. Again, it is hard to know where it got added into the mix, or if this was an initial member of the party, but it doesn’t half play a large role in keeping the cycle running. I struggle to sleep at the best of times, particularly if my pain levels are high or I’m too tired (oxymoron I know). I will toss and turn trying to find a semi comfortable position till about 4am, and often wake up to 4 times a night in a huge amount of pain. I attempt the usual sleep hygiene advice, and practice mindfulness with mixed results, but this never solves the problem.

I remember a doctors trip just over a year ago. I felt like I was loosing the plot. I was going through a particularly bad patch with both pain and insomnia whilst writing my thesis, and plonked myself down begging for help. I had been countless times before pleading for a referral with a pain specialist to no avail, and I had no idea how to manage things. I was barley sleeping at all (we are talking months of waking up countless times in pain averaging 0-2 hours sleep a night) and tried to explain to her the problem. Her answer was ‘well I don’t want to prescribe you anything for your sleep because your waking up in pain’. Fair enough – to which I replied ‘Can we do something about my pain then?!’. Her reply was ‘No, theres nothing we can do’.

I came out of that appointment and cried. To have insomnia on top of pain is extremely tough. Not just because your exhausted, but also due to the fact that you get absolutely no break from it. Sleep (when I do get it) has often been the one and only time in the day/week/month where I have managed to have some time out, and doctors often forget that this is extremely important if you suffer with pain on a daily basis.

Having deteriorated hugely at the points in my life that I was exercising most, and having gotten to a point where just cooking a basic meal can be the sum total of my energy or pain tolerance for the day I am at a loss of how to help myself. I can not push my body much more then I already do, and each day seems to bring a worsening in pain and fatigue. I couldn’t tell you the last day I had no pain, or even the last day that the pain was able to merge into the background. I can’t remember the last time I felt like I had energy to spare, or a night that I was able to wake up feeling truly rested. It is exhausting in and of itself, and extremely isolating.

Those around me recently have tried to be positive. ‘You will get better soon’ or ‘They’ll find a way to fix it’. ‘It can’t be that bad’ or ‘If you just do X then you’ll feel better’, but the reality is very different. EDS is a genetic condition. My genes can not possibly be fixed. Chronic pain is notoriously difficult to deal with – as you experience pain, your brain builds pathways. The more pathways that are built, the more you feel pain. I have been in pain for as long as I can remember – this isn’t going to be a quick fix, likelihood is that this isn’t going to be fixed at all. I pushed and pushed myself until I became too unwell to do so – there is no more energy left to ‘just do’ anything.
I don’t feel positive, and am struggling not to allow my angry side to run free with the next positive comment thrust in my direction.

Accepting that I am ill is much like grieving for any other loss. I am hurling between all 7 stages at a rather alarming rate – the rational side of my brain that may be able to tolerate the views of those that don’t have experiences in chronic pain/fatigue or other illnesses appears to have left the building.