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.