Over the last 10 years, my life has taken quite some ridiculous turns.
I have gone from struggling with a 12 year battle with Anorexia requiring hospitalisation to living in a body riddled with numerous chronic conditions, huge neurological issues and significant weight gain from medication, reduced ability for movement and disability.

I had hoped that getting surgery to fix my head back on would be the start of getting back to a healthy weight, but in true stripyside fashion my body has created significant issues in my lower back, hips and knees which have once again become issues that are impossible to work through without help.

Over the last 2 weeks I have had 2 appointments for both my hips and the plastic surgery team who would step in during the elective double mastectomy to reduce my 85% lifetime risk of breast cancer I currently carry with BRCA2 (not something I particularly want but I know its the most sensible route to take). In both of these appointments I have come up against either complete refusal to do the surgeries I need (for my hips) or the choice of no reconstruction with the mastectomy because my BMI is over the weight limits set.

I know this sounds like an easy fix, and to many able bodied people it is. Move more, eat less, get off your arse and magically the weight will fall away – because of course every overweight body belongs to someone too lazy to care about their weight. However for some of us this is not the case in the slightest. I have recently routinely come across consultants refusing to believe I ever had anorexia, instead insisting it must have been binge eating disorder, and the triggers this sets off in someone who used to get by in life literally starving themselves to survive is huge.

I have spent appointments having to ask if they know my history, have read about the fact I live with dysmotility in my digestive track (leaving room for a child-size portion per meal), know anything about the impacts of severe untreated pain from the conditions that need treating preventing movement and having to try and explain the effects of steroids, antidepressants and other meds on my weight. I have had thyroid issues, deal with constant issues with arthritis, PCOS, joint dislocations, balance problems and not to mention autonomic dysfunction turning me into someone who has gone from being willing and able to dance for 16 hours a week to becoming faint standing up at the turn of a hat.

I am not willingly stuffing my face. I am not unwilling to exercise – im trying so hard to push myself that I know I am at risk of both destroying my body further, and falling into old habits with starving myself. Not every fat person is fat out of choice (and even if you are, it should not be a barrier to healthcare). Some of us are stuck in the cycle of needing surgery to allow us to move more and aid in weight loss, but no access to surgery because we are fat. How is this ok?

The risks of such an arbitrary system of restricting surgery until you loose the weight is that it doesn’t take into account personal circumstances. There is no room for compassion, care or understanding. There is no room to understand that highlighting someones weight can cause serious harm to someones mental health – especially when other factors have played into weight gain. No understanding that numbers still trigger past eating disorders, even if someone looks far from emaciated now.

I have spent the last 2 weeks battling the urges to stop eating again. Feeling unable to leave the house because the thought of being in front of others at this weight is unbearable. Pushing my body too hard to exercise in ways that are undoubtably not sustainable and likely damaging (repeatedly dissociating shoulders self propelling in a wheelchair I suspect will end up doing more damage than good). I WISH I had been overeating because at least then there would be an easy way to fix this.

Instead of feeling empowered to loose weight as is doubtlessly the plan, I have been battling the thoughts of depression and suicide that took 12 years of treatment to begin to lift enough to have a life. I feel like I am on the edge of a cliff with my mental health and it terrifies me because I know where that ends, and chances are it will make little difference to my weight either way.

Instead of support and help from the NHS (which I have been begging for since my body ballooned in size with steroids), I have been left with very little. Other then options of group sessions which are contraindicated due to my history of anorexia, there are few places able to offer me any help at all. I am too fat for the eating disorders team, and too eating disordered for the weight management team – so I am left with the option of trying to pay £60 per session with a specialist dietician privately who may or may not be enough to stop me going backwards (and isn’t sustainable on a low income), or risk going it alone and knowing it will take all of a few weeks to end up right back in full on anorexia mode.

I feel so frustrated with this one size fits all way of treating patients. I would be only too happy to get back to a healthy weight – I have been battling my brain since becoming too unwell to manage it leading to isolation, self hatred and periods of unhealthy restriction, but with no support and no guidance I know full well the risks I am now facing to try and fit into a tick box.

Sadly I know only too well that I am not the only person in this boat. I can count off the top of my head at least 5 friends who are in the same position as me. All of us needing to access the surgeries that could provide us the ability to regain some of our mobility with histories of eating disorders, and all of us being denied reasonable support or help to access surgery without potentially triggering past eating disorders. It is infuriating to see others struggling, and scary to have also now ended up in the same boat.

Hello my lovelies,

It has been a while since I posted, but that doesn’t mean nothing has happened in my little bubble. As some of you will know I had one big adventure flying over the the USA to visit a neurosurgeon for a second (or 5th) opinion on my somewhat wobbly head.

Not in a million years did I think I would be flying for 8 hours to see a doctor, but I am pleased that I did. It has been so easy to fall into the trap of ignoring something that didn’t feel right. I have had so many appointments with UK based neurologists who have dismissed any issues present on my scans, and point blank refused to do a neurological exam – even with numbness, balance issues and visual changes. It left me feeling unsure of myself, and even though I could tell that something wasn’t right, I didn’t have the confidence to look into it further.

Having had 3 people tell me there were these issues present, and 3 doctors state that there were no issues on my scans, it felt like I was loosing the will to find an answer. How so many different views could come back from 1 set of scan images is beyond me, but I couldn’t keep going as I was.

So, a little over 2 weeks ago, my dad and I hopped on a plane all the way to Washington DC. It was my first time flying on a long haul flight, and I really had no idea what to expect. Armed with a bag full of pillows, my trusty neck brace and some extra pain relief, I am pleased to be able to say that the flights were tolerable, and although fatigue and pain levels have predictably skyrocketed since getting back, I am pleased that we made the trip.

We saw Dr Henderson who is so much friendlier the anyone I have seen here. The appointment went as I expected; an hours discussion which included a history of my symptoms, viewing the scan images and a full neurological exam (the thing that my UK doctors have refused to do). The neurological exam highlighted a lot of issues and these were definitely more pronounced then they had been during my visit to Dr Gilet a year and a half ago. I have very little sensitivity to pain, no gag reflex, loss of balance on closing my eyes and when walking heel to toe, and abnormal eye movement when looking to the right amongst other things. This shouldn’t have been a surprise to me, but I hadn’t quite realised how much worse things are now to where they were 2 years ago.

He ordered a rotational CT scan to measure for Atlanto Axial Instability which was present, and suggested that I would need both a fusion and decompression to stabilise things and give room for the CSF to flow adequately as my MRI showed the Chiari was causing ‘significant blockage to CSF flow’ – something which I was sure was present, but the UK neurologists swore blindly was not showing on my scans.

This is now the 4th Doctor to state that these issues are present, and I finally feel reassured enough to trust that 4 unrelated doctors wouldn’t be making this up. The UK for whatever reason is unwilling to help me with either surgery or symptom management (I am just being handed from pillar to post by doctors who either say they can’t operate or that there is nothing wrong in the first place), and I am getting to the stage where I am done with fighting the NHS.

So I have finally started to come to terms with the reality of the situation. If I want this fixed, then I will have to travel for surgery and begin fundraising in order to be able to do so. It is a scary amount of money that is needed, and the number is far outweighing anything my family could help me with. My only option will be to make a very public attempt to raise funds, which as an introvert, is about the worst thing I could ever think of doing!!!

I have a couple of decisions to make first about where I will go for surgery, and how long the fusion will be, but once that’s decided and I have an idea of the price, it will be time to start raising money to get myself better.

I really hope this will get me into a place where I am functioning again, and can get into work once more.

As always, I will keep you all in the loop, so watch this space!

Most people would give anything for some time at home away from work. When I was working, sick days felt like a holiday – I truly had no idea how anyone could find it boring. That was until all of my days turned into sick days.

Now days I spent the majority of my time in one of two places – my bedroom or the living room. I spent literally most of my times staring at the same 4 walls, and it feels like torture. I have watched everything I could think of watching on TV, I have listened to all of my audiobooks multiple times and I don’t have the energy to do much else.

Everything that I used to do is now too difficult to manage. I am living with the feeling of someone smashing an axe into the back of my head whenever I am upright for more then 10 minutes, I have 3-4 migraines a week and all of the other wonderful pain and feelings that EDS brings. All of these symptoms are made a million times worse when I can no longer leave the house enough to break up my day, or do any of the hobbies that kept me afloat. I now spend hours in the day asleep because I am in too much pain and too exhausted to do otherwise.

On the rare occasion I get out of the house, it is like a weight gets lifted off my shoulders. I can breath again, and life doesn’t seem so dark. Yet inevitably I know that there will be a payoff for pushing myself, and know full well that that payoff means I will spend the next 3-4 days imprisoned at home once again.

I desperately want to be working, to socialise and to keep up with the hobbies I love. I want to be the person I was 10 years ago. I want the highlight of my day to be getting out and doing something, not a carer turning up for 10 minutes to do the things I am unable to do.

I keep on thinking that if I just push myself a little harder, or ignore how my body feels that I will be able force my body back into normality, but sadly it just doesn’t work. God knows I have tried. Each time I push, my body pushes back harder, and once again I am stuck lying down trying to get rid of the severe pain in my head and back.

I long for a normal persons sick day. This isn’t a holiday. This is hell.

Yesterday I had an appointment with the gastro team.

I am no stranger to problems in this area, suffering from dysmotility, GERD, a sliding hiatus hernia and difficulty swallowing. Over recent years this has progressed and I now take anti sickness tablets daily to stop me vomiting, and am finding  food is getting stuck much more to the back of my throat when I try to eat or drink.

What I found peculiar about yesterdays appointment was just how matter of fact life changing diagnoses have become for me. I went in smiling, and the doctor was very friendly, we had a bit of a laugh and a joke, but in amongst it all the main message was ‘if its what I think it is, there is nothing we can do for you’. That basically translates too ‘sorry, good luck and goodbye’.

What is my reaction to this you may ask? Was I crying and unbearably distressed by this news? Of course not; I shrugged my shoulders, and carried on making sarcastic jokes. I find it so surreal that a serious diagnosis with such little option for treatment is just one more word added to the pile. I don’t think I even realised what it really meant: that I will likely continue to get worse, and that if I’m already needing a soft food diet (and struggling with that) what in earth happens when I get to the point where I can’t swallow anything at all?

I react this way because EDS gives me little choice. I have so many diagnoses of problems that can’t be fixed. Problems I will live with for the rest of my life in every system of my body. Not once have I reacted as I probably should have done because crying about it seems like a huge huge waste of my very limited energy supply. Each diagnosis leaves me a little more numb to my emotions, and a little more distant to those around me.

I haven’t mentioned these issues to friends or family – I haven’t called anyone to tell them, and I feel like I cant talk about them because these illnesses are so hard to understand. I don’t know that anyone could realise the implications on my everyday life without sadly being in this position them selves. EDS makes you a very lonely person.

I wish that I could react like you may do the first time you get diagnosed with a life changing illness. I wish that I wasn’t so used to hearing ‘theres nothing we can do’.

He told me there are ways to cope, and mentioned fizzy drinks as helpful (something I realised long ago as it forces food down my oesophagus which won’t budge by itself) – finally a medical excuse for my Diet Coke addiction! He even suggested that I should buy a Sodastream to help.

So here I am with a body refusing to work, struggling to eat and swallow without choking; but at least I get a Sodastream.

Part of the reason I have been so quiet lately is that I am so exhausted of the fight that goes hand in hand with trying to source the appropriate care in this country. I have spoken to many others in the same position, and I know for a fact that I am far from the only one to feel like giving up – so here you go, lets talk.

I have suffered from plain old PTSD for over 12 years. I am familiar with the panic attacks, the dissociation and the avoidance. I have made my peace with it for the most part – I know that the dissociation, however impractical, is there to protect me when things get too overwhelming, and for the most part I am now in control of my triggers. Of course I would rather not have it at all, but compared to a few years ago, the effects on my day-to-day life are minimal. I mention this because it’s from direct experience that I can say that those same feelings and reactions are now linked with a new trigger for me – that trigger is medicine.

Something as small as going to the GP now sends me into overdrive. I am so fearful that I will get the same old reactions that are so common for patients with EDS. The doubt, the way you are looked at like some sort of mental case and the arrogance that comes with talking over a patient and simply refusing to listen. When I go to the doctor, I know it is a million times more likely that I will be told that non of these conditions exist, or that they are far too rare for someone like me to have then for a doctor to actually accept that I am ill. They will sit and talk over my head to the other person I have with me rather then make eye contact and discuss things with the 30 year old woman in front of them – and this is far more damaging then I can express. I am made to feel sub-human. I am made to feel stupid, and attention seeking and small. Worse still I am now so disheartened that I spent over a year sitting with new and worsening symptoms without seeking further help.

This systemic neglect cuts deep into the minds of someone with a ‘rare’ or chronic illness. To belittle a patient to the extent that they can no longer seek medical care seems outrageous, but it appears to be a very common occurrence. I know so many others who now avoid medical intervention completely. We simply don’t have the energy to keep fighting any more.

Recently I had to change GP surgery. It took 4 years of neglected referrals and wasted appointments to push me to a point where I had no choice, but what surprised me in this was that my reluctance to change was simple: there was no guarantee any doctor would be any better, and I couldn’t face the idea of going through everything again, getting my hopes up, and then being shot down once more. The more that this happens, the worse it feels. I may have been strong once upon a time, but these days I have no energy left to withstand another onslaught.

Finally after 4 more referrals being refused (all whilst being told they had been done repeatedly) through 3 GPs at that surgery, I made a move. These referrals were important ones. One was for breast screening that should have been made 6 months before my 30th – and seeing as dad has had related cancer twice, and mum is now going though treatment for breast cancer, I really don’t want to ignore the 85% lifetime chance that I carry with the BRCA2 gene mutation I have. Another was for a scan of my spine after one leg went completely numb for 6 months for no apparent reason. I have also had several occasions of short term numbness/paralysis of both legs (thankfully only lasting a couple of hours each time) and to date, although the GPs suggested a scan of my spine, no referral has ever been made. I now have limited feeling in one leg and it is comparably very weak to the leg on my other side. The third referral was to the CMHT after my depression got unmanageable over the summer – the GP openly admitted I had scared her with how low I got this time round, yet although she repeatedly told me that this referral was in the pipeline, again it was never made. Finally, I was told that the horrific vertigo like dizziness I get, and the issues with loss of sensation I get are things that she would not treat unless I was under the care of a neurologist. She suggested a referral to Neurology was needed, and supposedly this had been made back in September. Sadly yet again, this was never made, and worse still I had been strung along for months awaiting for referrals to come through that never would. Each of these referrals were suggested by the GP. I did not push for them, I didn’t ask for them. So why lie about doing them?!

Each and every time issues like this happen, a little more of my resolve dies alongside it. It is almost impossible to keep on pushing when every appointment is at best a waste of time, and at worst a personal attack.

I am exhausted of fighting, of proving, and of undergoing frankly unpleasant medical tests only for the results to be dismissed once conditions are picked up on. I am tired of trying to fight for the care that people with more common conditions get given automatically. I am just so tired.

Flipping back PTSD, it truly surprises me just how many PTSD symptoms are now cropping up whenever I need to make contact with a doctor. My first appointment with the new GP felt horrific. I had been dissociating all day, and the nearer It got to my appointment time the more I started to panic. My heart was racing, my breathing shallowed, I was physically visibly shaking, and by the time I had to go I was terrified. “What if no one believes me? What if he makes me feel like I’m attention seeking? What if, what if, what if.” I found it extremely hard to talk to him, and although I brought a stack of hospital letters with me (as proof I wasn’t making things up), I found it very difficult to know what to say. Although he was surprisingly nice about things, I came away shaking at home for a further 2 hours after that appointment.

So far, he hasn’t been as bad as my last GP, but there is so much trust gone that I am still finding it extremely difficult to build up enough energy/courage to make further appointments. So much has been neglected in the past that I feel terrified that continued appointments will only make him think I am making the whole thing up. I am living with numerous symptoms left unmanaged, pain that is uncontrolled and fatigue worse than its ever been. I have ongoing issues with depression that frankly I have avoided bringing to medical attention due to the persistent idea that its the mental ill health that causes symptoms rather then the reality which is that you get depressed because your symptoms have dismantled your life one ability at a time. Of course you would be depressed if your body is so unpredictable. I have gone from being able to dance for 16 hours a week alongside a full time degree to barely managing 2 hours sat up before I am exhausted in just 5 years. I am wobbly, I am in pain, I am unable to manage basic self care without assistance. Who wouldn’t be depressed?! Yet I can’t discuss this with medical professionals for fear that they automatically then write off all other symptoms as psychosomatic.

It shouldn’t be like this. We shouldn’t be terrified of making a doctors appointment or attending a hospital appointment. We shouldn’t be scared of being honest about how low we feel due to the situation we find ourselves in. Non of this should be happening to any of us. EDS is not a mental illness, but managing the neglect we are faced with often causes either depression, anxiety or PTSD.

For those on the outside looking in, it is a frustrating situation to observe. I know that for those 4 years that I didn’t have the guts to face my fears and move frustrated many around me. I couldn’t explain to people why I couldn’t move surgery, or why I was ignoring symptoms. If you are a friend or loved one of another Zebra, please understand that this is not a sign of someone not helping them selves. Be there for them, talk to them and most importantly listen. Support could make all the difference in weather someone feels strong enough to face another battle – we can’t always do this alone. For any stripy people out there, you are not alone – we may not always be vocal about it, but you are certainly not on your own. Fear is a nasty business, and I hope that one day this situation changes. In the mean time I will be continuing my push for help, and perhaps one day, going to the GP will feel just like it should for anyone.

Last week I had an appointment that has completely thrown me off my balance. Not because it was a bad one, and not because the doctor was bad – it has thrown me off precisely because he is the exact opposite. I have no idea how to react to it.

Since having my upright MRI a year ago, I have come up against the most horrific consultants within my local hospital. I have spent a year being told that my scans show absolutely nothing, that I have no neurological symptoms whatsoever (tho had he of carried out an exam, he would have discovered many) and that I have no idea what I’m talking about. They have been quick to judge me as stupid and gullible, and even quicker to suggest that everything is mental health related. This toxic way of being has leaked out into other areas, and it has gotten to the point where I have repeatedly chosen to avoid appointments rather then put myself through another round of humiliation.

Worse still, without the backing of an NHS doctor to confirm my conditions, I have come up against family and friends who refuse to believe its possible for this type of treatment to take place. I have been constantly questioned about how I know the radiologist or surgeon in Barcelona are legitimate. “How do you know they aren’t just trying to make money from you?”, “How do you know you really have these problems?”, “How do you know you’re really going to get worse?”, and “I can’t believe that there’s no one in the UK doing this surgery, you just don’t know what your talking about” have all been repeatedly thrown at me during conversations like some sort of twisted broken record.

There is nothing worse than having to prove that you are ill when you feel this horrific every day.

However, last week everything changed, and I won’t lie – I have no idea how to respond to it. I have spent so long fighting to be listened to and believed that I never considered how it would feel when that happened.

I had an appointment with a neurosurgeon down at Kings College Hospital last week. Its an appointment I had repeatedly rearranged because I couldn’t cope with another dismissal, but come the 3rd appointment I really couldn’t get out of going any longer. I reluctantly packed an over night bag, and took my PA down to my parents for the night. The feeling of dread I had was worse than it has been for any exam.

We arrived at my appointment, and as I sat in the waiting room of the neurology clinic I really was questioning how I had gotten there. How was I sat in a room full of such obviously ill patients? How was I sitting there and recognising the types of movements, twitches and weakness as things that my body has also started doing? Is that really the way that these neurological issues progress? If so I don’t want to stick around for the ending.

We eventually got called in and to my surprise the consultant was not only happy that I had had an upright MRI, but also agreed with everything on my report. He went through it pointing things out, and after doing a proper neurological exam, he also found that I have hemiparesis on my right side, sensation changes, and balance problems – just as the consultant in Barcelona told me. He also checked my eyes, and the sight in my right eye is significantly worse then my left – as this is on the same side as the weakness in my body, he rang me to ask if I could talk to my GP about having it evaluated by ophthalmology at my local hospital as a ‘base line’ to keep track of future changes.

He took time to explain what the normal procedure would be for someone without EDS – usually this would be treated with surgery that removes a chunk of the skull to allow extra room. He also told me that due to my EDS and instability surgery would be much more complicated. For this reason he is referring me to the skull clinic at Kings, and also for the skull clinic MDT meeting to get ‘as many heads on this as possible’.

I am utterly shocked that all it has taken is a 2 hour train journey for my scans to suddenly show just what I already knew – that this is real. It seems like some sort of sick magic trick – now you see it, now you don’t.

Along with the shock came the initial relief. I hadn’t had to argue, I hadn’t had to prove myself. I was relieved that I was believed, and for a few days those feelings stuck, but with being believed comes the knowledge that I really do have something serious going on. These conditions are not something that I will just get over, nor will they go away without treatment. I will likely continue to worsen over time, and the end result of that is a very scary place indeed. Considering how much worse I am now then just a couple of years ago, its not exactly a slow process.

So now from being believed comes a ton of emotions that I really didn’t bargain for. I spent so long convincing myself that maybe I was wrong, and so much time telling myself it wasn’t really that serious. I have spent a year trying to tell myself it hasn’t existed, so now I am hit with all of the scary emotions I should have been able to have when I found out what my scans showed in the first place. I should have been allowed to be scared, upset and angry a year ago, but instead I had to fight continuously to be believed. I wouldn’t wish this treatment on my worst enemy.

I am happy that its now being counted as an actual medical condition on my records, and happy that I have at least 1 doctor on my side, but the reality is still that they are unlikely to be able to treat me surgically in this country. We still have no one that has done these operations on EDS patients in the UK, so I can’t help feeling like no matter how understanding this consultant is, I am still just as stuck as I have been.

The only way out would be too fundraise to go abroad, but I cannot face the idea of becoming a sob-story or being known only for my illnesses. I can’t face the idea of begging people to help me when there are so many others who are equally needy but who have families or partners that need them to be around. I really don’t know whether to laugh or cry. How on earth did my body so spectacularly go wrong?!

If someone were to ask me about the hardest part of living with EDS, I can answer the question without even thinking. It isn’t, as you may expect, living with joints that pop in an out multiple times a day. It isn’t the fatigue, the constant and unending fight you need just to get through the day. It isn’t even living with chronic pain. Hands down I can truly say that the absolute worst thing about living with EDS is the sheer level of neglect you experience from 99% of the doctors you see.

It is exhausting beyond belief to continually need to advocate just to get basic care, referrals and medication. I thought that things felt bad enough before being diagnosed with Chiari and AAI, but really that was easy in comparison to getting the right help now.

This week I discovered that the 4 referrals my GP was meant to do have not been done. This in itself would be far less frustrating if she were honest and upfront about not doing them, but instead I have spent the last few months trying to find out when the referrals would arrive. Each appointment she looked me straight in the eye and told me they had been done. Finally a couple of days back, I asked my carer to find out from the reception staff where the referrals were up to. It turns out she hasn’t made any of them.

I could understand it if it were for less serious issues – maybe I could get my head around it if it were to a dietician or physio even. Yet one of these was for an MRI of my spine after my leg went numb for 6 weeks (and still has altered sensation and weakness over 2 months on). Another was to see a neurologist after my dizziness and issues with, balance and weakness have gotten worse. Both of these were referrals she told me I needed herself as she isn’t comfortable treating the symptoms without the referrals being made.

Another was for breast screening which I should now be having on a yearly basis. This should have been made way back in September, and it really is the one referral I can fathom a refusal too. Surely if they know the risk of cancer is high, and I have tested positive for the gene mutation, there is absolutely no reason for it to be refused.

I am so frustrated with it all. I really did think that with so many serious issues beginning to happen, that maybe the care would be slightly more forthcoming, but instead it is worse than ever. I spend my appointments being talked down to and treated like some sort of hypochondriac or gullible young girl. The entire thing feels like some sort of sexist power play. It is patronising, dehumanising and quite frankly it is simply wrong. I can’t help feeling that if I was male, 5 years older and had a beard, I would be treated very differently indeed. Maybe then doctors would do what they promise, talk to me directly and be straight up and honest about their opinions.

So what effects does this have on a person? Sadly the effects go far beyond what you may first imagine.

Having had years of my symptoms being ignored or belittled, I have for the most part, given up on seeking medical care. I only go to the GP when something major happens, and not once did it cross my mind to ‘bother’ the doctors in an emergency room after the feeling in my leg disappeared. I didn’t see my GP for 3 days until I was absolutely sure that it wasn’t just something that had just popped out of place or something that would sort out on its own. I refused to go because I was scared. I was petrified of being laughed out of the waiting room, or that someone would try and suggest that it’s all psychosomatic, because most of the time they are exactly the reactions that we get. This continual drip feeding of negativity is unbelievably damaging, and if you don’t struggle with confidence, depression and anxiety before hand, you certainly will by the end of it.

You are left constantly second guessing yourself. I must analyse myself better then any doctor ever could every time I consider asking for help. I spend so much time hearing that my symptoms cant be real, that I have a genuine fear that maybe they are right. Maybe I’m just too lazy to walk without walking aids, maybe I secretly just don’t want to get better. Perhaps my brain trying to escape my head is simply some sick fantasy I’ve dreamt up out of a need for attention. Even though I have symptoms, test results and scans coming out of my ears, I now question myself every single time I need to ask for help.

EDS already leaves you unable to have the life you should be having, but on top of that comes the alienation that seeps out into your personal life as a direct result of lacking supportive medical care. The more I struggled to get treatment or help, the more family failed to believe me when I said that something was wrong. Everyone trusts a doctor will be right, so what hope do you have of convincing those around you that you are genuinely ill when your doctor prefers to chalk everything up to feeling a bit down? I spent years having to fight for care by myself due to incorrect beliefs that it was all ‘in my head’, and this was painfully lonely. I would give anything to be able to be genuine and honest about how I am feeling, but I have now learned it is much safer to keep my medical issues to myself rather then risk dismissal from those that should be some of my biggest support.

With the Chiari and AAI, the effects are amplified exponentially. Your symptoms are rare,  unexpected and odd. They are not what a typical doctor comes across. Not only that, but in the UK no one has an interest in fitting the puzzle together for EDS patients. Instead you are left to flounder alone. There is no expert to ask, there is no guarantee that anyone you see will treat you fairly or with dignity.

The panic I now get before appointments is not unlike the panic I experience from PTSD, because I know that if I see the wrong doctor, or see the right doctor but on a bad day, I could potentially land myself with a diagnosis of mental illness rather then any help for the symptoms I so desperately need relief for. I can not explain to you just how exhausting, tiring and frustrating it is to know that there is treatment out there that’s successful in not only halting the progression of symptoms, but very often in reversing a lot of them. It is out there, but unless you are lucky enough to be born in the right country, you need to somehow find an unbelievable amount of cash in order to access it. Not only that, but this country is full of doctors who refuse to even accept that these problems a) really exist for EDS patients (claiming that the term hyper-mobility instead of instability should be used in EDS patients purely because we obviously have superpowers that mean damaging our spinal cord or brainstem isn’t in any way dangerous!). or b) take note of numerous case studies and scientific data coming out from specialist neurosurgeons abroad who have been doing these operations with great success for many years.

It is all so unethical and unjust. It is wrong. I am a capable woman who lives with chronic illness. I am not attention seeking, and I am not making everything up for fun. I am simply asking to be treated like any other patient – with fairness, dignity and respect.

It has been too long since I last wrote, but I guess everything got on top of me more then I would like to admit.

I will go over my trip to Barcelona in another post, but at the moment it is too much to think about, so instead I’m going to talk about the other changes in my life.

As often happens when I get severely depressed (we are talking 6 weeks of crying/sleeping/insomnia/dissociation/suicidal thoughts and isolation which landed me on a second antidepressant and a very concerned GP) I have put some changes in place. I couldn’t live the way I have been living. Life felt aimless. I couldn’t work, wasn’t at university, and I was filling my time with pointless activities which (although creative) couldn’t give me any sense of achievement or purpose. Life became nothing more then watching my body disintegrate and pretending not to notice whilst being petrified behind closed doors. I couldn’t cope with another year like the last 3, especially with my latest health updates.

So three weeks before term was meant to start I bit the bullet and applied to do a part time second undergraduate degree in psychology. I could have done a conversion course as a masters, but realistically I have no way of knowing if I can cope with studying, and lets face it – the longer I can stretch out my education, the less time I will have feeling like I have nothing to aim for.

So far it has been tough. I didn’t realise how much my body had deconditioned – 3 or so years with little activity, sitting on the sofa really has lost me a lot of strength and my fatigue is much worse then it used to be. I am also struggling a lot with pain levels, and thanks to my somewhat wobbly head, I am getting migraines flaring for the few days post uni which is leaving little time to study. Socially it has been terrifying (I am not good at people, let alone groups of them whilst I’m sat in a wheelchair looking so obviously different), but other then the odd issue, so far that has actually been a huge positive. Its the first time I’ve really met new people in years, and thankfully a lot of them are just as quirky and chatty as I am. I am struggling a lot with my PTSD flairing up. Dissociation has become somewhat of a norm again, but the university is supportive, and no one is batting an eyelid at the silly putty coming out in lectures. All in all, as hard as Im finding it, I am also relieved that I can hold my head up high (not literally of course) and say that I am doing something with my life.

Leaving music behind has been surprisingly difficult. I didn’t stop playing because I wanted to. I stopped playing because my joints were causing me too much pain, my fatigue was unmanageable and I was in no fit state to force my body to carry on. I think its the lack of choice that makes it so upsetting. Music up until now has been my life. Since the age of 3 I played almost every day right up until my late 20’s, and without it I am not really sure who I will become. Maybe one day, if my body miraculously gets more manageable I can come back to it, but until then, it seems that life has taken me off on another path.

So – lets talk about life as a disabled student.

Turning up to university is scary – but add that to turning up on wheels, and we are talking some major anxiety. What if people are nasty? What if people think I’m attention seeking? What if nobody talks to you? I had all of these what ifs and more, and fully freaked out for the entire time before I started. On the first couple of days it was awkward. I took my PA along to support me, and yes people didn’t really approach me to start up conversations. I found that I had to initiate conversation, but once I did and people started to get to know me, all of the what ifs have turned out to be false.

Universities are incredibly supportive most of the time. So far I have had excellent support from student services, and a personal tutor who goes above and beyond intruding to get everything sorted and comfortable. All of the tutors I have come into contact with have been brilliant, and no one has made me feel out of place. I know that I will have periods of time where I struggle more, but I feel like the university are prepared to help me with that, and I know that should I need to take extra time or time out from the course, the support is there to do this. This is where university is so different from work. I know that I can pace my learning according to my needs. I can stretch it out, take weeks, months or even a year off and still come back to it when I am well enough to do so. In work I would loose my job long before I got to that point as I am simply not able to be reliable enough. This is a middle ground between being off sick and working. Doing part time study is pushing me to the limits of what I can physically manage, but there is so much flexibility that the only pressure I feel is from me.

Mobility wise I knew that if I wanted to be able to study, something had to give. I had a manual wheelchair from wheelchair services, and my cardiologist was fully encouraging me to use it as part of pacing myself properly. I knew that to get around campus on my feet would have meant I’d have dropped out (or onto the floor) within a week or two of starting, so a wheelchair was the only option. This has been a hard pill to swallow. I have been so determined to resist looking like a disabled person (ironic considering I have gotten used to walking around with a rollater called Dorris). I didn’t want my disability/illness to be the first think people notice about me, but now it is unavoidable. The benefits tho far outweigh the loss of pride, and I know that being able to come in on my dizziest day or a day when my leg is completely numb is worth much more then my somewhat peculiar vanity.

This has been one of the biggest challenges I have done. Reading with a combination of dyslexia, brain fog, dissociation and vision changes certainly make for an interesting afternoon, but I am loving every moment of it. I feel lucky to have been able to give it a go, and relieved that I have a reason to get up in the morning.

Changes are always scary, and especially so for those of us with chronic illnesses, but I am a firm believer that it is worth every moment of fear to be able to try something you had thought was impossible to achieve.

I will update you on the health side of things as soon as I have gotten my head together again!