On and Off Again

My relationship with my illness has been like that of a couple who have one of those on again/off again relationships. You know the sort of relationship I mean because everyone knows a couple who does this. They’ve been going out for a long time – they may even live together or be married. They potter along peacefully for months and then an argument occurs and it’s all off. There are tears, recriminations and the injured party tells all their friends complete horror stories about the unreasonable behaviour they’re been putting up with for so long. More than anything there is a need to justify the split and explain how terrible it’s all been. Then, inexplicably, sometimes after months apart, comes the news that they are suddenly reconciled. Cue the awkward social engagements where you have to make small talk with their newly reinstated partner without letting on that you know he cleaned out the joint account to put the money on a horse, or the one excruciating occasion when I had to endure a long car journey with someone who’s unreasonable and kinky sexual demands I was only too aware of in lurid detail. We often wonder why our friends take these partner’s back but there are many reasons: seeing what it’s like in the single world can be enough to make anyone revert to previously unwanted domesticity, familiarity can have a strange draw, it’s just too daunting financially or emotionally to complete the split, or finally that however dissatisfying or frustrating, it is the comfort of a well-worn relationship that drags a couple back together. Whatever the reason, friends of these couples hate the awkwardness and drama of living in the orbit of these couples.

My relationship with MS has been on again and off again. I veered between retreating into it and then ignoring it altogether. I have a personality of extremes – it is all or nothing for me. Rather than the on and off relationship I am very definite about what I want and don’t want. If it has deteriorated to the point of leaving I would imagine I’d left for a good reason and no amount of financial or emotional hardship will make me go back. However, I couldn’t outrun or walk away from MS. It was here, inside me, causing havoc and no matter how much I didn’t want it, I couldn’t divorce it. I resented it.

On a purely factual level my illness has been on and off. Back when it was first diagnosed it was there on my notes. Like a black mark that never goes away. I didn’t understand the significance of this until I saw a financial advisor about getting a mortgage. I couldn’t insure the mortgage with a payment protection plan purely because of MS. I was indignant and with all my new found knowledge from the MS Therapy Centre I said:

‘MS does not shorten life, it’s a degenerative disease but it’s not terminal. People don’t die of MS’.

His tone remained remarkably casual when he replied:

‘I know. It’s just that people with MS tend to commit suicide’.

There’s really no answer to that. I found I couldn’t start life insurance, or health insurance to travel abroad without stumping up a hefty premium. It was like a big banner unfurled across my brain saying in giant red letters.

‘THIS SHIT IS SERIOUS!’

Then a new neurologist came to the hospital in the late 1990s. He was going to gradually work his way through all people with neurological problems so we had input on a regular basis. Up until 1997 we’d had a visiting neurologist every now and then. I went for my appointment with trepidation because there were new drugs out there, interferons that could probably change the entire outlook of someone with MS. I was quite keen to talk about these drugs because I’d stabilised quite well and wanted this thing stopped in its tracks. I was confused by the questions he asked.

‘How long have you been using a walking stick?’

‘Do you really need it?’

‘Tell me what’s been happening’.

What was happening was that I had MS. I’d been told I had MS. It was like he’d missed a step or not read my notes. He was talking about having MRI scans, lumbar punctures, and all the tests I’d already had. I asked about the drugs.

‘Well let’s see what the results say first and then we’ll move forward.’

This was the start of two years of uncertainty while I travelled from rheumatologist, haematologist, and neurology to try and find out something we already knew. He kept justifying this on the basis of being thorough and since was no single test to confirm MS, all this was needed to rule everything else out. We got no further forward, except a possible positive result for Hughes Syndrome and then one for Systemic Lupus, but then when the tests were repeated there was nothing. I was completely confused by this point. My MRI showed the one single patch or lesion in the brain but nothing new. The neurologist concluded that it might be a very benign form of MS but that he suspected something else. He told me to take a soluble aspirin once a day and come back if I continued to have problems.

So, it seemed like MS was off again. I told people at the MS Therapy Centre what had happened. Some had similar experiences and were sympathetic, others were more hostile – they had always thought I didn’t have the same thing they did. Family were supportive and my GP was positively enraged that I had MS on my medical records, but that now this man was trying to overturn it all without any real new knowledge of what was causing my illness. I told friends but I really should have kept my mouth shut. Some were suspicious and thought I’d obviously not had anything wrong all along. Others clearly thought I was some sort of mental case who ‘thought’ they had an illness. I was so desperate that I actually asked the neuro if he thought I was crazy. I felt so ill I didn’t really care what was causing it; I simply wanted it to go away. I asked him to refer me to a psychiatrist if he thought it was all in my head. He looked startled and assured me there was something physical going on; he just didn’t know what it was. I was at the limits of medical science, but medical science never accepts its own limits; if they can’t see it or preferably measure it then it didn’t exist.

I saw a third neurologist in Milton Keynes after I moved there in 2001, but he was equally non-committal. All my GPs were treating me as if I had MS and all my medications were treating the symptoms of MS: tablets for pain and muscle spasm, tablets to regulate an overactive bladder and others to calm the strange nerve sensations. Yet, neurologists still seemed very keen on passing me from pillar to post. I had another MRI scan which was sent to a panel in Oxford. Half of them thought MS was the likely diagnosis whereas the other half felt my ‘lesion’ was an abnormality in my blood vessels – merely superficial and not the cause of any of my symptoms. The possibility of ME or Chronic Fatigue Syndrome reared its head a few times but was then dismissed. My joints started to swell and become painful and again I was sent to a rheumatologist. He assessed my joints and suggested injections into the joint with cortisone for my shoulder and hip. He diagnosed bursitis but suspected an underlying Connective Tissue Disease such as Lupus or Sjogren’s Syndrome. I started to have problems with my stomach and gall bladder – extreme pain and bloating, burning sensations and the inability to eat without feeling sick. I had an inflamed gallbladder and some form of infection and had to be treated in hospital and then for a month at home with high dose antibiotics. There was no explanation for the symptoms and the source of infection was never found.

Every time I saw a neurologist he or she would want to repeat the same test over and over again. Everyone had their own opinion and by this point I was being treated for possible MS, Mixed Connective Tissue Disease and eventually Chronic Myofascial Pain Syndrome. All anyone would agree on was that there was some type of auto-immune disorder affecting all my connective tissues, my joints and my central nervous system. Some tests even showed a swelling in the brain and a build-up of pressure in spinal fluid (it was only when I had a lumbar puncture and fluid was released that my symptoms improved) but I still sit here today as something of a medical question mark.

This was taking a terrible toll on me mentally. I simply did not know how to manage this constantly changing situation. Once told I might not have MS I should have been happy, but I couldn’t be happy because I felt my security and certainty taken away from me. I was concerned that if it wasn’t MS was it something worse? I worried that I would lose my financial security because I was seriously struggling to work even part-time with my symptoms. I couldn’t claim benefits as a question mark and if the medical profession thought I could live a normal life why couldn’t I? I felt like a hypochondriac, a fraud and a parasite. I was cut off from my support network of other people with MS because I now wasn’t one of them. I wasn’t one of the well either because I still fell over on a regular basis, fell asleep at the drop of a hat, walked with a stick and generally looked anything but normal. I had nowhere to fit in. The brisk medical viewpoint left me with no option – if they couldn’t find what this was it must be nothing. I was obviously overreacting and needed to pull myself together or pull my socks up and do whatever other people in this situation did – I decided to get on with life. I tried and tried to be normal, but kept slipping back into the arms of my illness. If I’m truly honest I’d got comfy there. Also I worried that eventually it would show its teeth again, even worse than before, and would take me by surprise. I weaved in and out of my ‘disabled world’ and the ‘normal world’ like an addict who can’t give up their chosen drug. One minute I hated being ill and threw myself into beating it, overcoming it with sheer force of will. The next minute I couldn’t live without it. It was all or nothing; a relationship gone bad, but comfy as an old pair of slippers.

Knowing Who You Are

A huge part of acceptance is knowing who you are and being confident with that knowledge. I’m not sure I really did know myself before my illness hit and it damaged my confidence and self-esteem very badly. I had been very proud of working on my local newspaper and enjoyed my life, going out with friends and racing from place to place in my little Fiat Cinquecento – the first new car I’d ever owned. I had to adjust to not working and seeing people every day, learning to drive an automatic car that I leased from the Motability scheme, and needing help with everyday tasks such as cooking, shopping and sometimes even washing and dressing.

I felt myself detach from my body. This was both a physical and mental phenomenon. I could see the full pot of tea on the table and my mind was telling me to reach for it, but the arm just wasn’t listening (sometimes I would get an ‘intention tremor’ where the messages got completely confused and I would try to grab the handle several times in a juddering movement – rather like a physical stutter). I would have to concentrate very carefully on putting one foot in front of the other, and every journey was tiring. There was also an emotional detachment; my mind didn’t want anything to do with my body. My body had broken and I couldn’t accept it as my own any more. It didn’t move in the natural way it once had where memory simply clicked in and my muscles worked accordingly and I could break into a dance or even a run. I couldn’t even stay upright on a bike. My brain apologised for my body on a daily basis, as if it was a naughty child I hadn’t learned to control yet. Sometimes, I simply wanted to leave my body on the floor where it was, having a tantrum, and walk away.

I did all the things a person with MS was supposed to do. I walked with my stick or crutches. I took my medication, went to the therapy centre, and my old life simply disappeared. Occasionally, good friends would snap me out of my auto-pilot by forcing me to do something. My friend Jo would ring me up and ask me if I wanted to go to the pub.

‘I’m on crutches’, I said.

‘Well I think they’ll fit in the car’, she told me

We went for lunch at a pub I used to work in and saw some of the old regulars.

‘We thought you were practically dead’ they said. It was always hard to see people who had known me before, but sometimes even worse to meet new people who asked the typical questions.

‘What have you done to yourself?’

‘Nothing, I haven’t been well so I walk on crutches’, I would reply.

‘Nothing serious I hope?’

‘Well, it is actually, its multiple sclerosis’; this would always signal the end of the conversation.

Another exchange at the hunt ball left me completely lost. A man I’d never met before who I knew was in an open prison for fraud asked me what I did.

‘I don’t do anything at the moment’, I said and explained I’d been ill.

‘Nothing?’ he asked incredulously, ‘if I did nothing I’d go mad’.

All the way home I’d seethed, wishing for a timely Winston Churchill style comeback. At least my nothing hadn’t landed me in prison! Other reactions were based along the lines of how lucky I was not to be working.

‘Wow, retired from work, how’d you manage that at your age’?

‘I was medically retired, I have MS’.

‘How lucky are you’.

Similarly annoying was the line:

‘You look alright to me’ – this always seemed to stir up a wellspring of sarcasm.

‘So, all those trained neurologists and doctors must be wrong. Wait till I tell them’.

It takes an awful lot of confidence and self-knowledge to have an invisibility disability. You have to be self-aware, assertive and able to stand your ground. You have to be able to ask for help when you need it and be prepared to disclose your illness and withstand other people’s insensitive and often hurtful reactions. Even recently, at a party, a friend of a friend asked how I’d been doing recently. I was in the midst of a relapse, having sleepless nights with intense pain and using a crutch to walk with. I thought he was really interested as he sat next to me to talk about his heart problems and we compared medications and treatments.

‘But you’ll get better?’ he asked.

I explained that with MS you never really get better. Every individual has their own pattern but I tend to have huge peaks and troughs, from walking wounded to completely stuck in bed. He looked shocked by this and then said he was going to the kitchen to use the salt and pepper. He avoided me for the rest of the night.

In the early days I had none of this confidence. The others I knew with MS were my confidence because they understood without explanation, didn’t ask stupid questions and hadn’t known me before. With the therapy group I could say I felt like crap, because everybody did. I could help around the centre without inviting question or upsetting my benefits.

I still felt a part of me was missing and the most important part – the part that made me who I really was. I had become a disabled person instead of a person who happened to have a disability. The MS set me apart, subsumed my personality, and I had let it happen. I buried myself in a new identity – a disabled identity – so I didn’t have to grieve for the old me and all the hopes and expectations I’d had.

I have never been a very good judge of what I am like. I recently did one of those silly literary quizzes on Facebook – the ones that ask which star you look most like, which Jane Austen hero should you marry or which character from Winnie-the-Pooh you are. I know how rubbish they are because one said the actress I most looked like was Emma Watson – Hermione in the Harry Potter films – and I am old enough to be her mother. I loved the book Little Women when I was little. It was the first book I read when I was about 9 years old and finished the reading scheme at school. When everyone else had reading to do the teacher would let me go to the school library where I could check out any book I wanted and then sink into one of the bean bags and read it. I liked to quiet of the library, the smell of wood polish and slightly musty books, and the fact that I was set apart from all the others in the classroom if I’m honest. It made me feel I’d achieved something special and even at the age of 9 this was important to me. Little Women was the first book I chose to read in the library and I fell in love with it immediately. Of all the March sisters I wanted to be Jo – the brave, literary tomboy. I loved Jo because she didn’t want to be a ‘lady’ and she was creative, always writing books and plays up in her garret and she also had the courage to know when something wasn’t right for her. In the second book Good Wives she turns down Laurie’s proposal of marriage because she knows he is not right for her, even though they are great friends and everyone expects it. She has the courage of her convictions. When I came across the quiz that asked which March sister would you be I fully expected to be Jo. I answered all the questions and came out as Amy!

Now I’m not saying that such quizzes are accurate assessors of personality – they are just a bit of fun. Yet, this was so contrary to what I imagined I had to read the result fully. Amy is my least favourite March sister and always has been. She is silly and pompous, always trying to better herself and be a proper lady. Amy is too proud of her looks and her accomplishments. She is spoiled and wishes she were rich. She does not want to share her Christmas breakfast with the poor Hummel family and when all the girls decide to buy presents for Marmee with their Christmas money, she saves some for herself so she can still have drawing pencils. She is selfish and very hard to like. I was really offended to be thought of in this way and had something of a virtual ‘flounce out of the room’ where I was disgusted and thought about removing the result from my timeline.

Yet the more I thought about it, the more I thought the quiz might be right. Amy is all of the things I’ve listed above, but I started to realise we did have a lot of the same characteristics. Just like Amy I had gone to a school where most people were middle class and definitely better off than we were. A lot of my friends had ponies, went on holidays abroad and had parents who were doctors or solicitors. I had found it very hard to fit in and be one of them – never realising I could just be me. I also liked to excel at things like Amy and make things special or look the best I could. In the hospital my named nurse had written in my notes that I was ‘fastidious’ about the way I looked and that I needed support to maintain my high standards of personal grooming. In the second book, Amy gets the opportunity to travel with Aunt March where she grows up an awful lot, especially after the death of her sister, Beth. The new grown up Amy is more confident and accepting of who she is and the family she has come from. She still likes to make the best of herself, but is less vain and proud of her own appearance. She still wants to achieve things and have accomplishments, but she is willing to work for this and swallow her pride more. Eventually, she marries Laurie and Jo is surprised by the young woman her sister has become when she returns from Europe. Maybe we weren’t so different.

I had ideas about myself that were, in some cases, completely contrary to my true self. It is very hard to look at yourself and see everything – the good and the bad and accept who you are. Acquiring a disability makes it even harder because your ideas about yourself can easily be shaped and distorted by attitudes and ideas about disability, the things people say to you and a completely shattered body image. Part of acceptance is being able to do this and form a confident, self-aware person. I want to get back to my true authentic self; to accept every part of me including my slightly defective body! Wish me luck.

Mixed Messages

 

I mentioned that I blame neurologists for my inability to accept Multiple Sclerosis but I guess there are many reasons. It’s just that neurologists are the first port of call for someone like me. I had no other experience – except what they were telling me. I was called back to see my consultant after my GP let the news slip. He told me that keeping the diagnosis secret from patients was a thing of the past. He used the typical cliché that ‘most people with MS lead relatively normal lives’. Relative to what? I’d only been diagnosed for a short time and already I was using a stick, losing my job and had spent several weeks, after a bad lumbar puncture, crawling round the house on my hands and knees because every time I tried to stand up I felt dizzy and vomited. This might seem to relatively normal to them, I thought, but it was far from normal for me.

I was never told how to manage or deal with the information. These were the years before MS Specialist Nurses or proper, focussed, rehabilitation units. I had a physiotherapist at the hospital that walked me up and down the corridor to see whether I was ready to go home or not. Once I was at home I was on my own. Luckily I found a good MS Therapy Centre who gave me information and support. Here were my people – they would teach me how to do this stuff.

This is where all the mixed messages began. The neurologist told me I should just carry on with life as I was and put the diagnosis to the back of my mind. Apparently some people never had a relapse again, so it was best not to change your whole life when you could probably manage perfectly well. Then I got fired and I didn’t know what to do next. I kept telling work that the neurologist had told me I would recover just fine, if only they would hang in there and wait. I wanted to see a Disability Officer at the employment service – it was their job at the time to give employers advice on how to adapt the workplace to accommodate their employees. Work sacked me a fortnight before he was available.

My next step was to find another job, but when I finally saw the disability officer he had a whole other plan for me:

‘you don’t want to be working do you?’ I couldn’t work out whether this was a statement or a question. So, I assured him I did.

‘no, you don’t understand me’, he replied ‘ you don’t want to be working’. So, it was a statement. He showed me how to make a claim for Incapacity Benefit and Disability Living Allowance.

I kept thinking there had to be something the hospital wasn’t telling me, because everyone else’s advice was completely contrary to theirs. I was assailed by kindly people sending articles on the newest drugs and therapies; anything from the new beta-interferon drugs to alternative therapies, bee venom, and some strange mix of vitamins and diet coke that seemed remarkably improbable. The rehabilitation team of physiotherapists and occupational therapists were telling me I should use a walking stick because my balance was off, I really needed a special kettle and a board to sit over the bath to help me get into the water without losing my balance. Yet, the neurologists were telling me that my type of MS should make very little difference to my life. So I figured that if everything wasn’t okay, there must be something wrong with me; it was all in my hands - as long as I kept determined and positive I could keep well.

Some of the things said to me at this point in my life were truly baffling:

‘oh what a shame, she was so pretty’ – of course if ugly people develop a life threatening illness that’s ok? Also, simply by developing an illness I was immediately thrown into a different category of person because pretty and ill are apparently mutually exclusive.

‘my aunt/brother/cousin knows someone with MS and they go sky-diving/bungee jumping/marathon running’ – this could be any combination of distant relative and daredevil activity, but the gist is that a degenerative illness has been the making of them. Maybe this was meant to be inspirational, but I would sit and smile while thinking ‘well, isn’t that nice for them’.

The worst thing anyone said to me in those first few weeks, happened when I did venture out to a wedding reception with some old friends from school and my friend Jo – the one person who could be relied upon to treat me normally. We were at a table with a few girls from sixth form, trading stories and catching up. One of them had brought a boyfriend with her and he was an outsider really, not party to the teachers we remembered like the ‘Starry-Eyed Raz Baz’ who had very jazzy glasses and a shiny suit or Mrs. Lightfoot who had the reddest hair and the highest heels I’d ever seen. At one point he disappeared, probably to get away from the endless stories, and my old friend leaned in towards me conspiratorially.

‘Could we not talk about your MS in front of Richard? His mum died of it’. Then Richard returned and she carried on talking as if nothing had happened, while I felt like I’d just disappeared.

She wasn’t the only one though. Friends, even long standing ones, seemed to have no idea how to treat me. My work friends had been my going out friends. There were three of us working in the features department of the newspaper and we were all around the same age. We shopped together, lunched together and went out clubbing together. Sometimes, we would be hysterical with laughter in our corner of the office and I was convinced that our boss would take to separating us all like naughty schoolchildren. In the long summer I had away from work they came out to visit me, but something had changed. It was maybe me, but I felt like a pit stop or even worse a ‘pity stop’ –something they had to get out of the way, a duty visit, before they could return to their normal lives of having fun; a life that had been mine only a few months previously. Another friend had a hen night, but thought ‘it wouldn’t be my sort of evening’. A few months ago it would have been exactly my sort of evening. I didn’t know whether I was offended or relieved. Was it not my sort of thing because the MS had changed me or was it that I was so embarrassed by my MS and the difficulties it caused I would rather not participate in the world.

How could I expect my friends to understand what was happening when I had no way of understanding myself? Although it was probably not the most important thing to be worrying about when I’d lost my health and my job, I was also worried about my love life. Pretty much immediately as I was diagnosed I finished with my boyfriend of the time. He’d been ill before me and diagnosed with a form of arthritis. As soon as he’d found out what was wrong with me he’d been very supportive and said it made no difference to the relationship. We could have a life, he said, there were benefits we could claim and although we wouldn’t be able to have careers or work we would have the bonus of spending all our time together. My reaction to this was an almost physical suffocation. I felt overwhelmed and panicked – my throat went tight. I imagined a future of nothing but daytime television and trips to the supermarket. He seemed ready to roll over and accept the kind of life I was fighting against. I had been told to fight and I was going to fight. I was going to have this normal life I’d been promised.

Around this time an old friend came back from university after finishing his degree. We’d been very close through sixth form, and had even applied for the same university with this romantic notion of making a new life in Liverpool, living in the halls of residence opposite Penny Lane. Then, when we both failed to get the grades he went to his second choice university and I decided to take a year out. I jumped at the chance to see him again, partly out of excitement after not seeing him for so long, but I think partly out of a need to remember who I was, to see myself as he saw me, before the illness. It wasn’t long before we were seeing each other regularly and I threw myself into the romance of it. He was always full of ideas and plans, to be a musician or a writer, and this was the life I wanted rather than a life of disability, adaptations, crutches and pity. I thought this was a perfect end to a difficult time of my life; with this relationship and the determination the neurologist wanted me to have, I could walk away from MS and become something. It was the happy ending I’d been looking for. We only briefly talked about the MS and then we concentrated on simply having a good time. He’d caught me at a good point in my illness. I was walking better and with a bit of rest during the day I could easily stand the odd late night or a drink here and there. I thought we didn’t discuss the MS much because he saw past it and still saw the girl he used to know. With him I was still me and we had so many other things to talk about. I thought the MS didn’t matter because he loved me. Then one evening, he was late for a date, because he was in the pub with friends. Being stupid, I went to look for him, and he’d had quite a lot to drink. In my car he held my hand as I drove:

‘I don’t have to tell you I love you’, he said.

How I didn’t just drop-kick him straight out of the car I don’t know.

‘Mum was talking to me late last night’, he carried on, ‘she wanted to talk to me about how serious this MS thing is and what it could mean in the future’.

I was angry that his mum had tried to scare him. This was me, a person, not some dangerous animal to be avoided at all costs.

‘but I told her not to worry. Because we’re just having a bit of fun aren’t we?’

My happy ending ended that night. I had lost my health, my job and all sense of who I was as a person. Now, my so-called normal life had none of the things in it that most people took for granted.

 

I Get An ‘F’ for Acceptance

I thought I was an A* student in acceptance – this is typical me, I like to excel at things. It was only recently I learned I was pretty crap at it actually. There is a family story that when I was very small and my rabbit died my parents let me have a look at him. Apparently I put on a very sad voice and said:

‘Ahhh, poor bunny’, and then, ‘can we eat him now?’

Okay, so I was a disturbed child, but to me this was the normal run of things, the circle of life (except without Elton John). One of my early memories is sitting on some sort of stool and chatting happily to my day while he gutted rabbits and threw their intestines into a bucket. This was clearly not disturbing to me, probably because it takes a lot to put me off chatting. Also, when you’re that small you think all families are like yours and living out where we did there was no one to form a comparison with. I remember thinking that stomach contents look a lot like Heinz vegetable soup and have never been able to eat it since.

We didn’t eat bunny, because he was a pet and not a wild rabbit which were fair game, along with ducks, pheasants, partridges, the odd pigeon and a few other things I can’t remember – probably because they were put into pies so their origins weren’t immediately obvious. I was brought up in the ways of the Lincolnshire countryside and knew that some animals were pets and others were dinner. Although we did eat chickens, when they’d stopped laying, but they didn’t have names so that’s ok. The point is, when you have animals, you learn about life and death fairly quickly. There was bunny and then a succession of other animal deaths over the years and we learned to accept this; it was sad but then you had to move on. One day you are here and the next you are not. We learned that foxes eat geese, but not Gregory Peck because he was a kick-ass goose who could take on a Mini. We also learned that if a large rabbit keels over stone dead in the night it would have probably been better for Albert the guinea pig not to have been under him at the time. My childhood memory of the royal wedding on 29^th July 1981 is forever tainted by the spaniels eating one of our chicks in the middle of the ceremony.

After all that you become accustomed to death and accept what life throws at you fairly readily, or so I thought. When they told me I had MS I had a few moments out in the corridor, staring at a wall. Then I figured nothing was going to change if I carried on sitting in the hallway staring, except for looking like a candidate for a section, so I got up and drove to work. This should be some clue as to how well I was doing mentally, but I had no idea how nuts it was at the time. I spoke to my manager  and she asked me if I wanted to go home for the rest of the day. I couldn’t imagine how that would help so I just sat at my desk and carried on. I carried on when it became a struggle to walk from the car park to the office, and when I realised getting up the stairs was becoming a problem. I even carried on all afternoon when I lost the use of my left arm. I could do everything with my right after all. My manager had to tell me that there was no more room for to work at the paper because I couldn’t manage. They gave me a month’s pay and that was the end of my full time working life.

Then I just stopped. My mind was busy and chaotic. My body was tired and simply could not do anymore. I discovered I could not dance anymore. At my brother’s wedding I had to be carried up two flights of stairs to the reception. I felt embarrassed and awkward. A couple of years earlier I’d been another girl altogether. I fondly remembered leaping athletically in and out of my beloved mini, cycling seven miles to work or doing a late shift at the nursing home and then going out to a club till 2am. In hindsight maybe I wore my immune system out!

I had to find my place in a new world – a disabled world, or what Susan Sontag called ‘the kingdom of the sick’. I had to learn how to be ill the only way I could, by copying someone else. I had to find some ill people to copy. Where did they hang out?  I wasn’t sure where to look, because ‘disabled’ was a whole new concept to me. I might as well have been told I was a unicorn (a crippled unicorn with its horn hanging off, but still a mythical sort of beast). To me, people with disabilities were obviously and visually disabled. I could see someone was blind because they’d have a white stick or a guide dog. I thought all people in wheelchairs simply couldn’t walk, but had no idea about the myriad of complex conditions and diseases that caused the ‘not walking’. I remember visiting a disability resource centre to meet a famous wheelchair user and being totally shocked to see them get up out of their wheelchair. She even went up some stairs – I thought ‘there’s a benefit review waiting to happen’, but I also learned that some people who play wheelchair basketball are not everyday wheelchair users. They actually climbed into a wheelchair to play a sport. I started to realise that this disability business was more complex than I could ever have imagined.

While I was really struggling, I didn’t really see myself as disabled. I knew I had a disease, but diseases usually get better. I understood being ill as a halfway stage; you get better or you get dead. I didn’t know you could be permanently in-between. I had gone from being a vital twenty-something to a person who could be knocked clean off her feet in a department store by a pack of unruly old ladies. To be truthful, they weren’t really unruly, just a bit ‘pushy’ and ‘shovey’ as if they assumed the gangway was purely for old people and us youngsters should either disappear or do what I did and plummet headlong into a rail of Country Casuals. I took to keeping a stick with me, because it warded off marauding geriatrics and meant that people would let me in front of them in queues. During one particularly bad relapse I took to using a foldable wheelchair, but this was always a case of taking my life into my hands, or rather, leaving my life in my husband’s hands as he tipped me headfirst down kerbs and into gutters. Apparently, everyone doesn’t know that you do this backwards.

I felt I’d done everything I could to accept it, but part of me did see acceptance as failure and giving in. I was caught up in all those great warlike metaphors of illness where someone automatically becomes a ‘victim’ or a ‘sufferer’ who is ‘bravely fighting’ their illness. Steeped in media coverage of other sick people that involved battling, not giving in, and surviving I thought that was the way to respond to my diagnosis. Anything less would be letting the disease take over and allowing an illness to run your life is the worse crime of all. I was caught in the medical perception of a chronic illness – something was wrong, it couldn’t be fixed and I was perpetually broken in some way. However, I had also been left in no doubt that I was responsible for my own broken-ness. I had to fight it, preferably with a smile on my face, and not let it affect my life. No wonder I was confused.

It wasn’t until this year when I went for counselling because life was just becoming too difficult that I realised I had never, in fifteen years, accepted anything at all. I dutifully filled in my well-being questionnaire and had my first session. It was in the second session that the counsellor pointed something out to me. At the bottom of the wellbeing test there was the following question:

‘In the past week have you engaged in behaviour that is damaging to your health or wellbeing’.

I had replied ‘never’ unfailingly for both my initial assessment and my appointments. She wondered if I’d understood the question and I said yes, of course I had. The question was for people who take drugs, or drink or self-harm and I never did any of those things.

‘What about if you have an illness and you are behaving in a way that might make your condition worse?’ she asked.

I went away and thought about this. How could I be doing anything to harm my health? My health was screwed so anything I did was negligible. I started reading a book about recovery and the penny finally dropped. I wasn’t different to people who drink or take drugs. I was exactly the same. I had an illness. I knew I had an illness and by all accounts that illness was getting worse. Yet, I had signed on to study a PhD telling my faculty that I didn’t expect my health to cause a problem. I had been regularly pulling all day sessions in the library without eating properly and studying all day at home when I wasn’t at university. I would struggle and walk all over campus without thinking for a minute that maybe I should think about a wheelchair for such long distances. I was often so stressed I was forgetting my tablets – leading to late night begging phone calls where I scored drugs from fellow MS people who were managing their illness an awful lot better than me! These are the many ways in which I was not accepting my illness:

·         Taking a train down to London and walking all the way from the Southbank Centre to King’s Cross station and panicking like mad when I was still not at the station twenty minutes before my train, wondering why my legs were getting slower and slower.

·         Seriously considering buying a house over three storeys where the kitchen was at the bottom and the only toilet was at the top.

·         Ignoring the fact that my weight was creeping ever higher and I wasn’t attempting to do any exercise or eat sensibly until the neurologist pointed out I probably needed to lose around six stone ‘but anything would do’.

·         Eating foods I knew aggravated my condition such as cream or strawberries – even though they made my tongue swell up and my mouth sore.

·         Forgetting to order my medication so that I spent a whole weekend wide awake, running for a wee every five minutes and in terrible pain leading to a week long recovery period.

I was not accepting the reality of my illness. A wide friend had said to me when I relapsed the previous year – ‘remember to look after your baseline’. I couldn’t imagine I even had a baseline I was erratic. I didn’t know it was possible to find one! Anyway, I had very important things to get done. I couldn’t keep ‘pandering’ to my illness. I realised I had been equating looking after myself with weakness, but I was actually making my situation even worse. I would often start sentences with ‘I don’t know what’s wrong with me, but..’ and then relate a story where it was blatantly obvious to anyone listening what was wrong with me. The same thing that had been wrong with me for fifteen years, plus I was a bit of an idiot!

Coming Out

This is a ‘coming out’ blog. I am doing away with the bullshit in order to explore what it’s really like to live everyday with an illness and be constantly in and out of recovery. Having M.S or Multiple Sclerosis? - (mustn’t forget the question mark – it is apparently an ‘inconclusive’ diagnosis) is like any other form of recovery – alcoholics never stop being alcoholics, just like I will never stop having this illness.

That’s a very hard thing to write. You’d think it would be easy, but even after 17 years I struggle with acceptance of this illness. I partly blame the medical profession. Actually I fully blame the medical profession who have no concept of the lived experience of illness or disability. Empirically minded, they look at a list of test results and conclude that ‘on paper’ I shouldn’t feel the way I do. It has taken me this long to find a neurologist who says that he cannot possibly hope to understand what my illness feels like. He accepts that there are things he doesn’t know. Together, we look at how my illness is making me feel, and try to deal with it. Up until now all neurologists seem to be labouring under the misconception that if they can’t see or measure it, it does not exist. I have lost count of the times I have baffled a doctor with my symptoms and just sit there silently while they tell me that I shouldn’t be feeling that way, according to their calculations.

I figure that since my illness will always be with me I could learn a lot from the 12 Step programme. The programme addicts use to aid recovery and modify their behaviour and the first step is acceptance.

17 years ago when I was told I had M.S it was a huge shock, but also like the thing I’d been expecting all along. Like some people say, when they met their future husband or wife it felt inevitable, M.S felt inevitable to me. I wondered if I’d caused it by reading weird Victorian girl’s fiction where the heroine romantically becomes a cripple and learns about life through her adversity. I read What Katy Did several times and, although it was a bit perverse when I think about it, actually coveted her sick room. Her crippled Cousin Helen had told her that she should make her sick room a fun and welcoming place to visit ( so the normals weren’t weirded out by all that pesky sickness). There was Beth in Little Women, learning patience, gentleness and fortitude while she quietly wasted away. Then there was the ‘Queen of the Girl Cripples’- Pollyanna. Pollyanna was an orphan who changed the life of her miserable Aunt Polly and all her servants by being pretty, funny and sickeningly cheerful. Her trick was to play the Glad Game which involved thinking of the situation you are in and finding something to be glad about. I tried this. I wrote a blog about finding something to be happy about. It lasted a while, but eventually I got so pissed off with being cheerful I cried for three days and decided to try therapy instead!

All of these role models had something in common – they all had an illness that turned them into this wonderful, saintly person who everyone loved and wanted to be around.

I imagined myself lying in a beautiful room with no evidence of illness, graciously accepting visitors and changing their lives by my pious and patient example. I guess it didn’t help that we were church goers. There are a couple of other things these heroines have in common – their illness didn’t last, because they either became miraculously better or they died, and their illness was pretty and invisible. In my experience illness was not pretty or very dignified. My first sick room was the local cottage hospital after experience extreme pain in my leg and an inability to walk. I didn’t look clean and freshly washed – usually I was in yesterday’s pyjamas with my face stuck to my pillow after a particularly sweaty and dribbly afternoon nap. My hair was usually vertical, rather like that strange bloke in Dr. and the Medics, and instead of a room decorated with flowers they were greeted by a sick bowl, some used gloves and an open tube of KY Jelly. I’m not sure Pollyanna, Beth or Katy had to suffer the indignity of some strange doctor putting a gloved finger up their bottom to see if their sphincter muscle was still working. I was soon disabused of the notion that sickness was in any way, pretty, dignified or inspiring.

Three years later, when I lost all feeling down my left side, I was not even told I had M.S at the hospital. I was scanned, poked and prodded then given a high dose burst of intravenous steroids to reduce inflammation. Steroids soon had me bouncing off the walls and I was discharged only to bounce right back again with the same issues. At one point I think they seriously thought about telling me because they took me in a private room. Then when they got there, they seemed to bottle it and let me go home. Thoroughly confused I went home wondering what it was all about. It was my GP who told me, in a routine appointment where I was discussing my hospital stay. I noticed the GP frowning and looking more and more bewildered. Eventually he stopped me and said:

                ‘You do know they think you have M.S?’

This threw me completely. I knew nothing about MS except a vague memory of the old MS Society posters depicting a woman with her spine torn out. Wow, I thought, that must be awful. Fancy feeling like your spine’s been torn out. Then I thought no more about it. Now I was wondering when the spine tearing would start. He explained to me what M.S was in the usual terms of an electrical wire – your nerves act like an electrical wire conducting messages to and from your brain to the rest of the body through your central nervous system. Each nerve is covered with a type of insulation called a myelin sheath which protects the nerves. M.S strips that sheath leading to nerve damage and faulty messages to the rest of the body. I listened, but somehow could not relate what he was telling me to what was happening in my body.

My G.P also told me that it was old-fashioned NHS practice for neurologists not to tell their patients they have M.S. Apparently, if a patient is expected to have the relapsing/remitting or benign form of Multiple Sclerosis, they do not always tell them the truth. The wisdom of this is that if the patient does not know they are ill, they won’t be ill. It was mind over matter or in this case mind over myelin. This denial of the truth would be good for the patient because then they would not act all inconveniently ill and disabled, but miraculously carry on being productive and living the life of a ‘normal’. Alongside this big slab of denial came the first of several platitudes; people with M.S can lead ‘relatively’ normal lives. This was a complete contradiction in terms – if the life I was going to live was so damn normal, why were they hiding the truth from me? However, the message of denial and determination, alongside the gung ho language of physical rehabilitation, set in place my way of dealing with the problem. So, instead of acceptance I decided to live life along these terms - ‘if I ignore this it won’t exist’.  Do I really need to tell you that this did not work?