The Hospital Experience

I am currently in hospital and desperately wish I was at home. I have found out over years of hospital admissions that the more I feel the need to stay the quicker the NHS want to kick me out; conversely the better I feel the more the NHS wants to keep me. This time is one of the latter times. I want to go home, but I seem to be staying here indefinitely. Officially I am awaiting an MRI scan and, as was pointed out to me the other day, unless I can stand unaided I am going nowhere. Hospital is always a world of contradiction for those of us with invisible disabilities and it is precisely because of the issues to do with this and the general cock-up that my life has been I ended up here. I did not maintain my recovery baseline.

Firstly, I couldn’t decide what to do with my GP. I have moved about 5cm out of my surgery area, but with a current Atos assessment pending and two upcoming hospital appointments I was being careful about when I made the change. I felt my Atos assessment needed back-up from a GP who had known me for a period of time, and that my new referral to the rehabilitation team was so important I didn’t want to lose it between GP surgeries. So, for a couple of weeks I told a little white lie and neglected to tell them I’d moved. I was also aware that I was going on holiday so needed a letter from my GP so that I could travel with my meds and also to say I was fit to fly; the two contradict each other completely but she did it anyway. I went to New York, came home for a week and then went to Northumberland. Sadly for me I got found out. Just before travelling to Northumberland I had a pain treatment and changed my address at the hospital, forgetting that a discharge email would be sent to my GP. I spent a lovely week away and came home to a letter saying I had 7 days to find a new GP; those 7 days were now up.

The second stupid thing I did was ignore the signs of a water infection. I had a bit of an inkling I might have a problem but tried the old cystitis sachets and assumed it would just go away. I flushed it out with cranberry juice while away because in the US I can get cranberry capsules with antibiotics from the pharmacy. It didn’t improve but didn’t bother me too much either. I didn’t really drink enough in retrospect and had been feeling slightly dehydrated for weeks. Also while wandering round all day it wasn’t always possible to go to the loo immediately and holding it in is the worst thing I can do. When I returned I didn’t go to the GP immediately because I was so busy trying to fit in work and home stuff before going away again. While friends and family rolled their eyes over my priorities I was enjoying myself. I did have a great time on my holidays, both of them, but with the benefit of hindsight I shouldn’t have gone on the second one. I was tired already and the late moving date I’d had meant that there were simply too many commitments in too short a space of time.

Then the weekend I got back it all went wrong. I was walking out to my car when my back simply gave out. I leaned in and put my handbag down, moved to get back up and that was it. The pain was sudden and like the worst cramp you can imagine. I tried to drop into my car seat but I couldn’t drop, I tried to stand up straight and I couldn’t and worst of all I couldn’t walk. After standing like a bloody statue for 30 minutes I had to brave the pain and get moving. So I walked into the house like I’d just got off a horse and I rang my parents. I couldn’t even lie down without help and once down I couldn’t move up again. I spent 24 hours like this until my friend M decided enough was enough and a GP needed to come out. We rang my old GP and he told us I was no longer on the list, so we rang 111. What a waste of time. It took 45 minutes, and being cut off twice, to be given the number of my own GP who had already refused to come out.  They then gave me an alternative number, for another GP who didn’t even cover my area. Now getting desperate, my friend rang a local surgery out of the phone book and explained. I don’t think we can do anything, but we’ll ring you back she was promised. An hour later she gave up on the lot of them and rang 999. Morphine and relief arrived within 20 minutes.

The difficulty of going into hospital is working out whether this is my ongoing condition or whether it is something completely new. After my GP had removed the question mark from my MS diagnosis earlier in the year and my steroid treatment in the same hospital in April I felt fairly confident telling them I’d had MS for 18 years, but didn’t know whether this was a relapse or not. I was admitted and treated with diazepam and morphine and the medical team decided that it was probably a relapse as I hadn’t been carrying, bending or doing anything athletic. They also decided I had a kidney infection, which wasn’t really a surprise considering how long I’d been ignoring the niggling symptoms. A few days later they diagnosed a resistant bug that needed a very specific antibiotic, but in the meantime they wanted a neurological consult before prescribing steroids again.

I’ve not had very good relationships with neurologists but the most recent one I’ve had was the best so far. I was diagnosed as having MS in 1995, by a medical consultant who had consulted with neuros in Sheffield. Lincoln didn’t have its own neuro clinic then and it was the way everyone was diagnosed. I soon found out how to manage stuff like disability aids, money to live on and groups to join with very little help from the medical profession. I didn’t see a neuro again until 5 years later when the new MS drugs were coming in and everyone was being re-assessed for their suitability for interferon trials. This was my undoing. The next neuro I saw seemed determined from the outset to completely overturn my diagnosis and remove me from his list. He passed me from allergist, to haematologist, to rheumatologist for anything that would explain my symptoms and it threw up a few other things – Hughes Syndrome and the possibility of a connective tissue disease, but no big catch all syndrome that would fully explain everything that was going on. I was passed back to neurology where he rather grudgingly admitted maybe it was MS, but in a very benign form that wouldn’t cause much of a problem. Maybe to his mind, it wasn’t much of a problem, but from my perspective as a once healthy and active 23 year old, having spells of being unable to walk, sleeping round the clock and experiencing extreme pain on a daily basis, was hardly problem free. I guess he had more perspective than me and saw the worst primary progressive cases of MS. However, I still found him dismissive and a dangerous idea started to take root in my mind; what if this was all in my head?

Several years and neurologists later I have been no further forward on the diagnosis front until very recently when it seemed to have been accepted that after this many years of a relapsing remitting pattern there was nothing else it could be. I was happy and comfortable with this and since my treatment at the pain clinic and the addition of Bowen therapy I was actually more active than I’d been in years. This relapse was not unexpected considering my activity level and the amount of stress I was under. The neurologist came onto the ward two days after I arrived, and I overheard a conversation with the medical consultant where she said ‘I have no reason to disbelieve her’. My anxiety started immediately and wasn’t helped when he came into my curtain and started the conversation with ‘I am not saying you are lying but…’ There are times when I really wish I could react in the moment. I am one of those people who think of the witty retort several hours later, or sit on her anger until three days later when expressing it is inappropriate. I would love to be able to think express an emotion when I feel it, but my first reaction seems to be curling up inside myself and thinking later. This is an extremely rude way of starting any conversation in retrospect, but it wasn’t until relaying the conversation to the medical consultant later that day when I felt able to complain about his manner. Accusing someone with an invisible disability of being less than truthful hits them where it hurts the most. There have been times where I have doubted my own symptoms, wondering whether if I just tried a bit harder, or rested a bit more, or ignored the pain it would just go away. Even during my counsellor training there have been times when I’ve thought ‘what if this is just a somatic ailment’; the bodies’ way of turning an unacceptable mental illness into a more acceptable physical ailment. However, I keep coming back to the same place – if I can’t walk or am suffering extreme pain it doesn’t really matter what’s causing it, just treat the symptoms. This type of dealing with patients seems peculiar to neurology where all symptoms are questioned and tested before they are accepted. Yet, there is still no one simple test for MS. An MRI scan is indicative but not conclusive; a lumbar puncture can pinpoint certain anti-bodies but is not conclusive. It would seem that many people diagnosed before the advent of the MRI scanner were diagnosed with MS via symptoms and have never had that diagnosis questioned since.

My diagnosis, and that of my peers diagnosed around the same time, seems to be constantly scrutinised and measured. Some were dismissed as ‘too far gone’ for interferon treatment, while others were seen as too well or benign to bother with. The criteria for interferon was so narrow as to be ridiculous and the issues of cost and effectiveness weighed heavily into the argument. A neurologist I had been using at Hull was much more effective in the way he treated me, although the outcome was the same. He was a lesson in how semantics and a bit of compassion can change everything. After conducting a battery of tests the first thing he said was ‘I believe you’ and he accepted that clearly there was something serious happening that affected my life enormously. He said that neurology does not have the answers to everything, and that there are clearly more things out there than they know about. So, he wasn’t sure what was going on either, but at least he believed me and understood that, for me, this was a big deal.

The new guy made me feel immediately guilty and ashamed of myself. I felt like I was wasting his time, and that maybe I was ‘putting it on’. I lost all of my fight in an instant and felt like a fraud. I hope that by the time I’ve had my MRI scan and he returns my fight will return also. I want to say that it was not my fault or my idea to diagnose this disease. I did not pluck it out of thin air. A doctor in a hospital diagnosed me and I did not have any reason to suspect he was wrong. My whole life has been rebuilt on this premise of a diagnosis – it affects everything I do, from work to life insurance, to getting a mortgage. All of these things are more difficult because once, a doctor decided I had MS and it is now on my records. If this diagnosis is now completely overturned with no idea of what has replaced it, who do I become? I still have all the problems, but no rehabilitation team to support me, no specialist nurse, a reduction in entitlement to benefits and the expectations I might go back to work. Doctors have no understanding of the psychological effects of a disability or long term illness. This is one of the reasons I am training as a counsellor and psychotherapist and hope to help people in this same position.

In order to overcome the shock of being diagnosed with a long term condition it is sometimes necessary to identify with a new group of people because it can be impossible to fully integrate back

into your old circle of friends. I found friends who were so shocked by my diagnosis they struggled to talk to me. The old things we used to do together as young people in our twenties, dancing and clubbing, drinking, going to work at my local newspaper, became difficult. I couldn’t drink as much because of the medication, I couldn’t go out clubbing because all of my rhythm and balance had gone and I had become the person who sat watching everyone else’s drinks and handbags. I had started to struggle to stay awake beyond 11pm and felt like a complete killjoy. A lot of friends did remain loyal but mistakes were made in how I was treated; I was not invited to hen nights on the premise that I would not be able to get on the mini-bus. I started to become that static person on a night out who everyone tells their problems too while all my friends were getting chatted up. So, because I no longer fitted in my old circle I created a new circle.

I became part of a sub-culture to use proper sociological terms. We have our own rules, hierarchies and moral compass. We have our own jokes and a gallows sense of humour about our disability. Without this subculture I would have been lost and never known how to cope with not working, not being able to have children or the breakdown of my marriage as my symptoms worsened. These people understood those experiences and taught me to live a new life, within limits, but still as funny and exciting as the one I’d left behind. I had found people to identify with and got used to my new disability identity. What doctors do not realise is that when someone has overcome the psychological curve ball they’ve been thrown and built a new life for the last 18 years, to take it away again is a wrench. It leaves me belonging nowhere – some weird no-man’s land where I can’t compete on able-bodied terms and the sub-culture no longer wants me because I am a fraud. Labels may not seem important, but they are. It is my label that gets me my benefits, my blue badge and my help to get through university. Without a label I would still need all these things, but would find it twice as hard to get them. What it does is make my life harder than it already is.