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!

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.

Chronic Illness is a Lonely Place

Having a chronic illness is more then just feeling unwell. It is all consuming, scary, and bit by bit it can eat away at your life until there seems to be nothing left.

Most of the time, like many others, I tend to provide the outside world with the version of me that looks well. I barely talk about the pain, the fears and the frustrations. I want people to see the person that I am without the illness colouring their views, but this also means that they only see a part of me.

Underneath the facade lays a river of emoitions ranging from anger, frustration, fear to simply feeling numb. Day upon day, as my body does yet another unpredictable thing, the mask gets harder to hold. This leads to isolating yourself simply because you don’t have the energy to provide the outside world with that cheery sarcastic person you have always appeared to be. As the days that I see people diminishes, depression sneaks back up on me, and I am finding it a fine line between staying mentally healthy, and sinking back into the all to familiar world of darkness that I have become accustomed too.

It is difficult to be in pain. It is difficult to feel exhausted for no apparent reason, and difficult to explain the invisible symptoms in a way that the uninitiated will understand. How can I possibly explain that I can’t even wash more then once in 5 days or cook myself a simple meal anymore? How can I explain it to people when I look so healthy on the outside?

I used to be a different person. Having essentially grown up with pain (be it emotional or physical) I became adept at pushing through. I have a stubborn streak, and this meant that I was able to force myself into my work/studies/social time even on the worst of days. I was able to push myself far beyond the point that I should have stopped, and it is this part of me that is most frustrated. For the first time in my life I have had to stop. There has been no choice in this. It isn’t laziness or a lack of motivation – I have simply reached a point at which my body has decided it can’t be pushed any more. I used to be extremely active, I used to keep up with my hobbies and travel around unaided even though I was usually only managing 2-3 hours of sleep a night. I had big dreams for what the future would hold. Dreams of what I would become, and what I would work as. Dreams of fixing myself somehow.

Alongside chronic illnesses such as POTS and EDS you are often forced into the position of having to reassess your abilities. As each day goes on, your dreams and independence are slowly stripped away from you. You are suddenly aware that all of the things you had worked towards may not work for you any longer; you may not be able to keep up with the pace of the type of work you have always dreamed of, or are in too much pain to keep up with your peers. Every aspect of your life and your future is now coloured by the knowledge that this unwelcome bedfellow will be with you for life.

So when those in the outside world are telling me to ‘buck up’, ‘get on with it’ or that ‘things will get better soon’ it makes me want to scream. The number of well meaning comments that go along the lines of ‘have you just tried to ignore it?’ or ‘I know someone with a disability far worse then yours and they run a business’, meant in the nicest of ways, actually lead to you isolating yourself more from those around you for fear of frustrating them with your (perceived) pessimistic views on life.

I wish more then anything that I could be totally honest with those around me, but like many other chronically ill people, I have learned that looking well leads to far fewer issues then laying yourself bare.

Perhaps one day I will build up the courage to speak these words aloud or to answer truthfully when someone asks how I’m doing. Until then I will continue to perfect the happy facade (whilst swearing under my breath as yet another joint goes on an unexpected and unwelcome visit to its neighbour).

An Intro

cropped-zebra-cute-animal-pictures2.jpg For me living with Ehlers Danlos Syndrome and POTS has been like living with a dirty little secret. I have always been known as the clumsy one, as the one who doesn’t work hard enough, or the lazy one. The person who seems too lazy to get a job alongside full time studies, or the 1 person in her year that couldn’t seem to manage the 25 minute walk into music college and the 25 minute walk back.

It was easy to go along with this. To take these assumptions as reasons of my falling short alongside those around me, but as the years have gone on I have been forced by my body to admit that something else is going on.

I have lived with chronic pain since the age of 14. It started on a music course – 5 days of playing, and I suddenly found that I couldn’t even grip a pencil, let alone cope with holding a bag or playing my instruments without the (now familiar) feeling of nausea that accompanies that sort of pain. Suspected repetitive strain injury in my wrists quickly became neck pain, pain in my shoulders and arms and back pain. I had issues with my TMJ (jaw) from the age of 12 – it would click and clunk, and lock for months at a time – I regularly had periods of time when I couldn’t shut my teeth together, and other where I couldn’t open my mouth more then a centimetre or two. Accompanying this was severe insomnia (which had been going on since the age of 7, and is still with me almost 21 years later), clumsiness and joint hyper mobility – sitting with my feet behind my head was a favourite party trick of mine!

As the years went on, the pain became my normal. It never crossed my mind that anyone had a life without pain so I became adept and carrying on regardless and hiding these parts as best I could. I battled for 7 years to get through a full time degree at music college, and it was only really in the last couple of years of my studies that I began to accept that I had a problem. By this time my pain and other symptoms had reached new levels. I often had periods of time where I could no longer feel my fingers. I had rehearsals and practice sessions where my joints popped so painfully that I burst into tears or ran out to go and lye in a room alone and cry on the floor. I was constantly dizzy and out of breath (what I now know to be Postural Orthostatic Tachycardia Syndrome), and constantly exhausted.

It was in my final year that my life began to be put on hold. For the 3 years previously, I had found a love of dancing, and was in classes for 15 hours a week – it was where I felt free, and where I was at peace with myself. However I hit a wall. My pain became so severe that I was waking up 4 times a night in agony, and was needing to pop joints back into place numerous times a day. The dancing had to stop if I had any chance of finishing my degree, and sure enough with a lack of exercise to strengthen my already weak/hyper-mobile joints, I deteriorated faster then ever.

A year after finishing my degree I am sat in a room alone surrounded by mobility aids, and a collection of crockery that I just don’t have the energy to clear away. I am in the midst of seeing numerous specialists, and am building a collection of labels that I would rather not have. 2 years ago I was still managing the odd dance class – and now I am reliant on a blue badge to get me around, and am increasingly reliant on friends and family to help with basic home and personal care.

I don’t know how to be an ill person. I don’t know how to shake the expectations I used to have of myself, or to build a life that integrates being ill with the person that I want to be. I do know that the only way through this will be to find a way to be open and honest with those around me. To accept that for now, even tho I have the body of a (very bendy) 90 year old, I am still a 28 year old woman with the same stubborn determination that I had many years ago. I may not be well enough to achieve the many dreams I used to have, but I’m not out of ideas just yet.