Getting Sick When Your Already Sick

One thing that few of us chronically ill people talk about is being ill – and this seems doubly true when it comes to getting a normal illness on top of it all.

When you are chronically ill, feeling a bit crap comes as an every day occurrence. You are already in pain, exhausted and feeling that fluey feeling most people only experience with the actual flue. Personally I find that what I really mean when I say ‘I’m fine thank you’  is actually ‘I am in so much pain I could puke and I’m so exhausted that I feel a tad on the dead side, but thats nothing out of the ordinary thanks’. I do this because like many others, I assume that I am rarely talking to someone who would actually want an honest answer – after all, I suspect most wouldn’t be able to figure out a reply without a spectacularly awkward silence first. My illness is something I have tried to push out of focus to the world around me – I take pride in my ability to mask the bad times and make people forget that I’m ill. After all, I am a woman first and an illness last.

However, let me be the first to tell you that getting ill on top of being ill is not much fun! Today I woke up with a sore throat, a fever that has been raging all day, skin so sensitive I want to peel it off, and that general fluey fog you get with being ill. I have gone between shivering and being so sleepy that I can’t keep my eyes open, and spent most of the day feeling like the world was moving.

Now, for all you well people out there – imagine having the flu, and then adding it to all of the symptoms EDS and POTS gives someone day-to-day. Add it to the joints popping in and out of place all day, the usual constant headache, tight muscles, chronic pain and brain fog (yes, you get a doubly foggy brain!) Add that to issues with swallowing, tachycardia, postural dizziness and fatigue. On top of all of that, add in the nausea, back ache, odd temperature regulation, insomnia and TMJ (jaw) issues. I am not listing everything here, but you get the idea. We already feel like crap day to day, so when the double whammy comes, it tends to hit us hard.

Even on a day like today, I hide it, even tho its perhaps more socially acceptable to talk about this type of illness. I may mention in passing that I’m feeling ‘a bit crap’, but what I actually mean is that I feel bloody horrific. I shut myself away, and I wait for it to pass, all the time knowing that when I get better, I won’t really be better at all – I will just be chronically ill rather then chronically ill with bells and whistles.

The one upside, is that being chronically ill will feel much better then this does.

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Part Two of ‘The Not So Sexy Side’…

Part Two of ‘The Not So Sexy Side’…

As you may remember from one of my older posts, EDS causes problems only a woman can get. Pelvic organ prolapse is usually something only reserved for those lucky women who are older and/or have had kids, yet with EDS we often get this thrown into our 20’s free of charge!
Pelvic organ prolapse referes to a prolapse within the pelvic region. A prolapse means that the muscles and ligaments (in this case within the pelvis) have stopped being able to support the organs sufficiently, and this leads to hernias. In pelvic organ prolapse this can be concerning the bladder (a cystocele), the rectum (the rectocele), the small bowl (an entrocele), the uterus (utrine prolapse) and a vaginal vault prolapse (a prolapse following a hysterectomy). With pelvic organ prolapse these organs bulge into the vagina causing an array of fairly uncomfortable symptoms.

 

Having finally been diagnosed with a prolapse after a 2 year fight with medical professionals, I was eventually referred to a local gynaecologist to get things sorted. Being of typically English sensibilities, it was not exactly the least embarrassing appointment I’ve ever attended!

I spent the few days before my appointment in obligatory panic mode. What if I was brushed off again? What if it wasn’t a real illness and I had made everything up? What if I would be laughed out of the clinic in shame?! I am aware non of this was a logical thought process seeing as a professional had already diagnosed me, but with EDS a diagnoses is often brushed aside when it seems inconvenient for the next professional to take into account. I am so used to having to fight my corner that I get huge anxiety before each and every appointment. With this appointment, I thankfully needn’t have worried.

 

As soon as I stepped into the room, the doctor was friendly. The more nervous I am, the more I spout random nonsense, and what with this particular appointment concerning my lady bits, there was a lot of nonsense being spoken. Thankfully, she was more then happy to join in with my nervous chatter.

She started off with some questions concerning my symptoms. We spoke about pain and a downward heaviness down below, issues with incontinence, issues with intercourse etc. She kept the questions going, so there were no awkward silences in which I could get painfully embarrassed.

 

Next came an internal exam – I was expecting the cystocele, but it did come as a bit of a shock when she also diagnosed a utrine prolapse and rectocele. It seems the party for one just turned into a party for three down there.

My options for treatment at this stage are limited. I will eventually require surgery as these issues don’t fix themselves, but as I am still to have children, and own particularly crappy collagen, they would rather try ‘conservative measures’ first. These consist of specialist physio therapy focusing on training up my rather lax pelvic floor, and the use of a pessary – a silicone device inserted into the vagina that helps to hold everything back in place.

1-pessary-image
A selection of different pessaries

 

The physio doesn’t sound like a whole lot of fun – obviously to retrain your pelvic floor, it requires feedback, and from what I can gather this will be via another person and via specialist equipment. I am not by nature prone to flashing my bits to random strangers in hospital settings, and this will be no less embarrassing then turning up to my own wedding naked. I know that. The physio will largely be aimed at trying to halt the progression rather then curing it, and that is a thought thats hard to swallow.

The pessary is probably the thing that I am struggling most with. There are many different options from your doctor to choose from, each supporting different areas and providing different levels of support. Some will support just the uterus, the bladder, the rectum – some will support more then 1 area. There are things like a ring pessary for those that don’t require as much support, and then there are ‘space filling’ pessaries for those that require a little more help. I am unfortunate enough to end up with the latter. I have been given a cube pessary. This is basically a silicone cube which has indents in that form suction to support the walls of your vagina, complete with a rather undignified silicone cord – just incase you manage to loose where it is up there! For the cube pessary (all pessaries require different care), it needs to be removed every night, washed, and left out until the morning, when you have the really fun job of trying to stuff it back up there whilst trying not to swear – really not an easy task, especially when you fling it half way across the room and have to race your way there before the dog thinks he has a new chew toy (yes, that really happened)!

It is not so much the rigmarole of using the pessary that is the problem – its knowing that I need to use it. I somehow feel less attractive. As it can’t be left in during intercourse, I am dreading the day I will need to push a hand away and shimmy off to the bathroom to get the thing out before things can get started – spontaneity in the bedroom is truly a thing of the past. I feel embarrassed knowing that its now a part of my personal life, and worried about how people will react. As a young woman of 29, it feels unfair that my body has given out now – it is rare for women that haven’t had kids and especially rare for  young woman to suffer with pelvic organ prolapse, but thanks to EDS it here, and its here to stay.  I can cope with so many of the joys that EDS brings to the table – the pain, the subluxes and dislocations, the difficulty swallowing and digesting food, the fatigue – but for it to affect my lady bits just seems like a massive step too far.

As if I wasn’t a crap enough catch before, yet more super attractive health issues are handed to me on a plater!

Tomorrow morning I have a super early appointment to go back to the gynaecologist. Pessary fitting is a bit hit and miss – its basically trial and error to find a shape and size that works for you. Unfortunately mine is shifting down throughout the day and pressing into bits that really don’t want to be pressed. With the right size and shape, in theory it shouldn’t move about, expel from the body or even be noticeable to the wearer – lets hope I find the right one soon! The doctor very kindly offered to see me after being on a night shift to try another size or shape, so I somehow need to make sure that I am up bright and early to duck in for a repeat embarrassing experience.

EDS is one pretty tricky bedfellow to manage these days.

Dealing With Loss

As most of you know, the last few years have been tricky. For someone that used to be thoroughly independent, active and energetic, adjusting to life with an illness is tough.

Recently I have been reminiscing. All of the years spent at music college, I spent my time swinging between love and hate. I loved the sense of excitement and freedom when playing with others, and the means of expression I had when playing beautifully sad music. I loved the social aspect, especially those late night rehearsals with a cuppa (or wine) in hand on a dark and cold winters evening. I even enjoyed early morning practice sessions once I got into the habit of getting up on time! I also enjoyed performing eventually. It took me years to get past the persistent “I’m not good enough” voice – that was my toughest challenge of all. The first couple of years I couldn’t stop sabotaging myself before a concert. I would end up not practicing for 3 weeks before a performance, which I suspect was a way of allowing mistakes without a sense of my whole self being unacceptable. Once I got past that tho, performing turned into a favourite. I was excited to play, to share. I was able to start being myself.

By the time I left college, I thought I had had enough. Try as I might, I was never satisfied with my work, and it was exhausting to keep pushing toward a goal that doesn’t exist. Perfectionist tendencies aren’t always a great thing! I had stayed with my teacher long passed our prime, and I became frustrated. I wanted to move forward in the last year there, but it felt like a mountain I couldn’t climb without help, and I didn’t have the energy to fight for it. I was ready to throw everything in to my final recital, but most of my lessons that year were frustrating and disheartening. With hands that went numb mid piece, and a lung capacity better suited to a mouse, I couldn’t attain the standard I needed. I’m pretty sure my teacher grew just as frustrated as me.

During my last couple of years at music college my health got noticeably worse. The pain I had experienced from the age of 12 got significantly worse, and I started to suspect that it wasn’t just music to blame. No other musician I knew was waking up 4 times a night in agony, or needing to lie on the floor to find their breath again. My fatigue worsened, my heart was galloping of at 130BPM at rest, and much higher as soon as I was up on my feet. I was constantly fighting to get enough air, which as a recorder player proved quite an issue! In short, music was becoming an unrealistic goal. It became a case of pushing myself through to the end of my course so that I had a degree under my belt, and accepting that I just couldn’t play at my best.

After leaving, I spent 1/4 of a term teaching, and a full 7 months working as a carer. I loved working with mental health, and figured that was a direction I could head to. I would work enough to do a postgrad in art therapy, and then work from there on in. That was the plan, but unfortunately my body thought otherwise.

In November of that year I got optic neuritis (swelling of the optic nerve), and ended up on a long course of very high dose steroids. Contrary to popular belief, I didn’t end up with gym sized muscles, but a couple of walking aids instead! In reality I can’t be sure if the steroids really did finish me off, or whether I would have headed in this direction anyway. My life closed up into being mostly housebound, and I had lost everything.

Today, I am marginally better. Not because my body is any fitter (quite the contrary in fact), but because I am accepting the help I need. Looking back at my studies, I would probably say that I needed walking aids sooner. In reality, POTS and EDS were taking their tole, and I can’t help thinking that if they had of been managed properly, I may have ended college on a much better note. Perhaps I could have managed that first I missed by a couple of marks, or ended my recital on a real high. Perhaps I could have carried on playing for longer.

Tonight I have a painful ache for my past life. No matter how much I struggled, I can’t help feeling that the music I learned for 22 years is being wasted due to the conditions I am living with. I miss playing, and I miss performing. I miss that sense of freedom I experienced in fleeting moments, and the challenges that came with trying to attain it. I miss striving for goals, and being driven to work hard for something that might just be possible. Most of all, I miss the music.

In many ways I am blessed. I have found other ways of doing things, and on a good day, I can pretend that it has been my choice to choose another path. I have other hobbies in my life, and I still have the dream of getting fit enough to study and work again. All is not lost – it can’t be. I refuse to life this life for another 60 years.

Loss is a very tricky beast when it comes to your health.

BRCA2: The Journey Begins

As many of you will have read, I decided to undergo genetic testing a few weeks ago. We have significant family history of breast cancer on my dads side, and are of Ashkanazi Jewish decent – this is a big risk factor. Due to this combination both dad and his sister were tested for the breast cancer genes, and sadly came back as BRCA2 positive.

The choice to go for testing was not an easy one to make. I did my fair share of burying my head in the sand, but no matter how much I tried, the thoughts would randomly pop into my head. Fear of the unknown, fear of having the faulty gene, fear of my siblings having it, fear of cancer – just lots of different flavoured fear really. I would be in the bath, or driving down the M1, and all of a sudden my mind would flip onto it, and I would find myself going round all of the scariest scenarios possible – namely that I would test positive, and life as I had planned would no longer be an option.

At the just shy of 29, my risks would not have been out of the ordinary – for breast cancer, the risks start climbing at 30, and around 40 for ovarian cancer (at least thats the information I’ve been given).  However, it is more then just the risks to me I was worried about. I have always wanted a family, and although I am free and single at the moment (rather perfecting the art of the crazy dog lady), a positive result would have implications as far as my future children would go. So, knowing full well that I couldn’t put it off forever, now seemed as good a time as any to find out.

After a nail biting few weeks, I went to the genetics clinic to get my result.
Its amazing how much of an effect a few simple words can have on the rest of your life.

I sat down, and the genetic counsellor came strait out with “I’m really sorry to say this, but you’ve tested positive for the gene’.

I don’t really remember a huge amount more from that appointment, other then absolute terror, and a fair amount of water pouring from my eyes. The life I have that is already full to bursting with health problems just got a million times more complicated.

Yesturday I was upset. My gem of a neighbour who had offered to accompany me to my appointment escorted me back to hers for 3 very strong cups of irish tea. We spoke for an hour or so, thrashing around all over the place as my mind furiously sifted through too many scenarios to count. She was extremely patient with me, and allowed me to get my head together in my own time – I honestly don’t know what I’d have done without her being there. I then decided I should keep busy, and as much as I didnt want to, I headed to jewellery class where I could spend a couple of hours hitting things (mostly metal, but my hand is a little worse for where… it turns out my aim leaves a lot to be desired when I’m stressed!)

Today I just feel numb. I know that there are a million and one feelings hidden underneath, but I just can’t seem to find them. The prospect of now needing to consider prophylactic surgery is extremely daunting, and what effects will this have on my already difficult dating scenario? At what point would I drop this one into the conversation. “Hey, by the way not only do I have the body of a 90 year old, but these boobs you see here are for a limited time only, and if you’re up for having children its likely to involve microscopes and something resembling a turkey baster”… Not the ideal selling point.

It will be a process of letting go of the things I had dreamed of doing. A big thing for me has always been that I wanted to breastfeed any kids that I had, but if I choose to go for surgery, this will no longer be an option unless I risk leaving it till I’ve had them.  I had also never fathomed having the one part of my body I’ve never hated being lopped off by a surgeon and replaced with imposters. This will be a grieving process on a very personal level.

Fortunately, I really have stumbled across some amazing people who are supporting me. For all of the friends who have been dropping me little messages to keep my chin up and calling me and allowing me to talk until I find a stopping point without complaint, I can not say thank you enough. There are also 2 rather fantastic charities providing me with access to people who have trodden this path, and this is absolutely invaluable to me. I got a call from one volunteer to ask how my appointment had gone, and her response was exactly right for me – “I’m so sorry to hear that, but welcome to the mutant club!”

So, from one very stripy BRCA2 mutant, I will leave this post here for now. I will keep posting this journey alongside that of EDS and POTS, so I certainly won’t be short of ideas!

The Not So Sexy Side to EDS

Ehlers Danlos Syndrome is a funny beast. Day after day, I am constantly amazed at the weird and weirder things my body decides to do – or not do as the case may be. I would go so far as to say that my collagen is inherently lazy, and no matter how much caffeine I feed it, it just never gets its act together.

Along with all of the usual things that people understand when you say the words ‘faulty connective tissue’, there are the rather embarrassing issues that we all keep rather quiet about. As if pain, chronic join subluxions/dislocations and spectacularly large stretch marks aren’t enough, it seems that all of your insides need to join in the party – and when I say all, I mean all!

So – if you are squeamish about the inward workings of a lady, I would pop off and make a cuppa without reading any further!

Due to everything being stretchy, prolapses of all varieties are all too common. I was aware of prolapses in your digestive tract, but had given little thought to potential Pelvic Organ Prolapse until the last couple of years when something decidedly stopped being where it was supposed to be.

Initially I had noticed issues with discharge of sorts. It was thought to be chronic thrush, but after 6 months of medication, nothing had changed. I had already started having the odd issue with my urinary tract, but after a while, I started to suspect that my discharge was actually leakage from my bladder. I was constantly worried about whether I smelt, and had taken to carrying spare clothing around, as often I would leak just a little too much to get away with staying in the same clothes. I was also experiencing an odd sensation of heaviness/pulling. It wasn’t quite painful, but it was uncomfortable. Upon checking the strings of my coil one day, I found that there was a bulge. After some initial panic, I hopped it off to the doctors and mentioned all of the above.

Unfortunately, that first doctors appointment was bad enough to stop me seeking help for way over a year. He examined me intensely, but proceeded to suggest that the thing I could see and feel was nothing more then my vaginal wall – to which I exclaimed “Well it certainly might me, but it isn’t where I left it”. He proceeded to suggest I probably suffered from an overactive bladder, and gave me medication that in big letter stated “DO NOT TAKE IF YOU HAVE A HEART CONDITION” – obviously totally out of the question for someone with POTS. I came out of that appointment and cried for hours in humiliation. He made me feel like I was visiting for attention, and it made me question myself for months. I really did wonder weather I was subconsciously looking for extra diagnoses and that everything I felt was actually totally fabricated.

Fast forward a year or so, and I was in bed with a guy for the first time since a rather nasty break up years earlier. Just after everything had calmed down, he propped himself up, and explained that I may want to get myself checked as he could feel himself being ‘pushed out’ – hardly the conversation any young woman wants to have with a man. Red faced, I nodded, although the issue didn’t stop there. I had also managed to stab him with my IUD (it seems the weird superpowers were going spare on the day that I was created) – I felt awful! As EDS gives us the power of being super stretchy, even things like the coil are likely to move about. Mine has shifted down over the years, and the combination between a coil sitting too low, and your insides resembling a bouncy castle can wreck havoc on your sex life. Most embarrassingly of all, with the combination of a bladder that is too stretchy (thus retaining far more, and emptying far less then usual) and a prolapse comes the issue of leaking during sex. Again, not exactly a hot date. That night I had to change my bed because of the sheer volume that had literally been knocked out of me – feel free to stop reading this at any time!

After another few months of trying to ignore it (needless to say with a very inactive sex-life), I finally built up the courage to mention it for the second time. I was already under a urogynacologist, and brought it up there thinking I would stand the best chance of getting it taken seriously. She told me I would have an internal examination during one of the tests, and so I agreed to wait until then. Unfortunately this didn’t take place, and so a few days ago, I travelled down to see a member of her team to ask to have it checked. Roll on embarrassing appointment number two.

This second appointment was little better. Initially, the nurse tried to suggest that the man had made it up just to be mean to me. In all honesty, this is so unlikely that he would have deserved a medal for inventiveness if this had of been the case! I didn’t even know much about a prolapse, could you really imagine many men being knowledgeable enough in that area to use as a way of being nasty?! I explained that I could also notice a difference and went into detail explaining my symptoms. She eventually agreed to attempt an internal examination, but persisted in her attempts to dismiss it. She said she could feel a bump, but that lots of women had this and it could be considered normal. She said she could feel it descending upon talking, laughing and coughing, but that she wasn’t really sure what it meant. Eventually she called an on call gynaecologist, so after a 30 minute wait, I was finally able to get it looked at by a specialist. Finally after a 2 year wait I was diagnosed with ‘grade 2 descent with a cystocele’ – essentially this means that my bladder is prolapsing into my vagina.

The gynaecologist told me that there is no reason a normal 28 year old who hasn’t given birth would have this, but that due to my collagen being overly stretchy, it is unfortunately very common in women with EDS. She explained it will either require surgery or a peccary (a device thats inserted to support the vaginal wall), but it would require a more in depth look before anything can be sorted.

So, yet another label added to the list, and this one for me is probably one of the worst. The impact this has had on my confidence, sex life and desires to get into relationships are vast. As if having chronic health conditions weren’t enough, EDS has added yet another source of humiliation, embarrassment and inconvenience to my life. I have no idea how you work your way past this and into a happy and healthy long term relationship when you feel like you need to mark your nether regions with a do not enter sign. It is bad enough that you are in constant pain, with joints that flop about more then a rag doll without it taking away your enjoyment in the bedroom to boot.

A Mini Update, and The Eve Before My Second Genetics Appointment

So as always, a lot seems to happen in a tiny amount of time.

On the medical front, I am happy to report a productive appointment with the very lovely GP yesterday. I feel extremely lucky to have gone from one extreme to the total opposite by chance, and for the first time in my life I actually walk out of an appointment feeling positive.

Having made contact with the endocrine team, they have suggested a referral to them, and a scan of my thyroid as I am now clinically diagnosable as having hyperthyroid (or however you’re meant to phrase that mouthful). So being on the case, this GP was more then happy to sort those referrals out – no hint of annoyance or complacency to be found! Although having thyroid issues are nothing to celebrate, I feel so much relief that they are finally being looked into. Its been over a year of battling – up till now they have been brushed off, and only by TSH and T4 were ever checked (TSH always came back as low, but T4 was normal). Thankfully this GP tagged on a test for my T3 levels, and low and behold they came back as high – hence the hyperthyroid diagnosis. I have been feeling pretty rough since my very long encounter with high dose steroids, and it was around the end of those that my thyroid was checked and found to be not behaving. I am dearly hoping that this is a step in the right direction, and that I can get properly diagnosed, treated and begin to feel much more myself again.

I also spoke to her about my issues with the gastro team discharging me. Apart from spending a lot of time laughing about it (I genuinely believe you could make a comedy script based on my encounters with the NHS), she was pretty unimpressed. She is making contact with my POTS team to ask if they want me referred to any other specific teams (preferably those that are EDS aware), and if not will either try some strategies herself, and/or refer me to a local gastro team. Had this have been the old GP, she would have given me a blank look, scribbled on a peace of paper, told me she couldn’t do anything and written it off as another problem not worth trying to solve. Thank goodness this has happened now and not a few months ago.

We also discussed the rheumatology appointment – I had received a letter questioning why my doctor had asked for them to see me. She assured me it was all written into the first letter, but obviously they hadn’t bothered to read it properly. So she is writing a second time making it clear it is so that I can get a referral to Stanmore – fingers crossed its second time lucky!

In other news, its my second appointment with the genetics team tomorrow, and I am feeling a little bit on edge. I had the first appointment a week and a half ago, and decided I needed time to take in the information before going ahead with the test. It turns out they use the numbers of an 80% lifetime risk of breast cancer, and a 30% risk of ovarian cancer for the BRCA 2 mutation – pretty high numbers for a single gene eh? It will take 4 weeks to get the results once you do the test, and obviously they encourage you to think about both outcomes, and what you would do with a positive result. I am fairly certain that although I don’t want to deal with having the operations and the emotions that they would entail, it would be the most sensible path for me to choose. I don’t want to end up with cancer on top of everything else, and as much as I love my boobs, I am pretty sure I will love them less if I know they stand an 80% chance of giving me something potentially life threatening  (and at least unpleasant). Still, its a rather crazily big decision to make – the choice to know if I carry the gene or not. I didn’t think I would ever need to consider the question, let alone formulate an answer.

So, at 11 o’clock tomorrow morning I will be heading to my appointment, and I think biting the bullet and going through with the test. I would be lying if I said I wasn’t scared.

If you are near Birmingham and fancy a drink and an evening of sarcastic entertainment, then drop me a line – I will need all the distraction I can get!

Another Set Back

Having been relatively surprised with the care I received from my first really caring GP, it should not have come as a surprise that life in the NHS would not stay all that rosy for long. Having said that, it would have been nice to have had slightly longer feeling all warm inside before another blow was dealt.

It took me a year and a half to see a gastroenterologist – I was not all that upset by the waiting time. I know that the NHS is stretched and things are tight – heck, I was just relieved to even be on a waiting list. I got several tests done, and hey presto I have 3 diagnosis to boot (it seems that us EDS’ers really do earn our stripes) – oesophageal and gut dysmotility and a hernia. Nothing particularly surprising really – I struggle with things like dysphagia, regurgitation, the feeling that my oesophagus just won’t push things down (liquids and solids alike), pain and getting full after mouse sized portions (somebody really needs to make my oesophagus stomach sized… design fault me thinks) pretty much every time I eat. Its frustrating on my good days, and makes me want to rip my hair out on my bad days – but I am all good with pretending to look normal whilst holding regurgitated dinner in my mouth before forcing it down for a second go.

The last appointment I had was results day. The guy was nice enough – pretty pushed for time, so gave me a very quick take on things which didnt give my head much time to process. He decided on a treatment plan, and told me he would see me within 3-4 months time, and even had his nurse book me in an appointment there and then, just to be sure. In the mean time, he gave me a list of things to try before we met again – where he would shift things, look into medication etc in order to get things sorted. All fine(ish) – at least we were going to do something and hopefully work on getting my digestive tract back on track.

Imagine my surprise then when I opened an ominous looking envelope a few days ago that simply stated ‘You’re appointment to see Dr X has been cancelled as he has discharged you from the pathway’. After an initial outburst of profanities and tears of sheer panic for an hour, I pulled myself together enough to ring the hospital and ask what on earth has gone on.

The receptionist then proceeded to explain how Dr X had made a ‘typographical error’ and I should never have been offered a follow up appointment. This would have been easier to believe had he not reiterated several times that I would be seeing him again, made his nurse book me an appointment before leaving the hospital and hadn’t sent me a letter following the last appointment detailing out the treatment plan – including the arranged next appointment. I pointed out these little details to the receptionist who promptly told me ‘If you want to discuss this further, you’ll have to go back to your GP as you are now formally discharged’.

Helpful.

So, having calmed down enough to book in another appointment with my GP for Wednesday, I got home yesterday for a second letter of insanity – this one explaining my discharge – surely someone aught to at least post these the right way round? This letter, if it is at all possible, makes even less sense then the former. So much so that I am pretty sure I could have won the award for Best Confused Face of the Year.

Not only does it mention the good old ‘typographical error’ that was ‘greeted with the impression that she will be reviewed again’, it also says: ‘I outlined in the last paragraph my recommendations on the cumulative strategy that cannot improve her symptoms and I therefore do not feel that it is necessary to follow her up’.

Not only does the last paragraph of the letter he is referring to mention nothing about his recommendations on his cumulative strategy (it actually talks about a referral to Stanmore) – but apparently the strategy was a totally pointless (fictitious) exercise anyhow.

Nothing that he wrote made any sense at all – but I am now left essentially having been labeled as untreatable before anybody even attempted to help. I am left still struggling to swallow enough to get in adequate nutrition, still getting worse as time goes on, only now with extra labels attached. I am painfully aware that even if I manage to get a new referral in place, it will take months, if not years to see anybody – and in that time, I am left to deal with this totally alone.

This is not help. This surely qualifies as a form of torture in some countries? I am fighting every single step of the way to get help for conditions that I have actually been diagnosed with. I naively thought that getting the name was the hard part, but with EDS that battle does not stop. For whatever reason, we have to push and push, and fight and fight just to get appointments or treatment. This continuous battle wears you down and leads to you getting sicker and more exhausted – it is a downward spiral into god knows where.

I am sure most issues are funding related, but a little bit of humanity wouldn’t go amiss. These letters made me feel like I was in the wrong. That I had created false memories, or had made up what I wanted him to say. It would be far more respectful to have received correspondence apologising for the change of plan, with maybe even a suggestion of what to do next, rather then just dropping a bomb shell and running. Humanity costs nothing, but can make the difference between leaving a patient distraught and suicidal, or leaving them able to face another fight and push for the care they need.

For me, I have no idea where this leaves me. Having spent 12 years of my life engaged in an eating disorder, oesophageal dysmotility seems a particularly cruel joke from the universe. I am desperate to get it sorted, but I have no where else to turn. I can not afford private health care, and the so called specialist is now out of reach. I am left to wait – for what I am unsure.

I would give anything for a working NHS right now.