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.

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.