Your Stories

A weird attack of pins and needles

MICHELLE

The following story is a potted reason for me joining up with NABD. I was always a very active, athletic type of person. Even when I was very young I found it difficult to sit still for long. My mother always called me a 'thoroughbred'! I’m the middle one of three children and I was always the practical one. The other two were the academic ones. Laden with a rucksack, I did a fair bit of travelling, mostly to very inaccessible places, which I am extremely grateful for now. I lived in Adelaide, Australia from the age of 7, until I was about 12. My parents had decided to sell the house and take us all on a 6 week world cruise, by ship, to Australia. I find it hard to believe that we did it. Some of the countries we stopped in were incredible; places like Acapulco, Fiji, Pompeii etc. The saddest thing is that the entire trip was filmed on a cine-camera and then edited. We had it all ready to show my grandmother in Dublin when we got back. Unfortunately, the camera and film was stolen from the back of my dad’s car while they went out one evening. I still find that incredibly sad.

Anyway, I digress.

Eventually, I started a job at BT back in 1989. I was earning a fair bit of money, so one day, my friend and I decided to join a gym. She wanted to get a flat stomach and I wanted to build up my weedy legs! I loved going to the gym. I was going 3 times a week and it was such a buzz. The main exercise I was doing for my legs was the one where you sit on a bench and lift up weights from the calf area. I was repeating this particular exercise over a hundred times a go and I loved it. One day though, whilst doing this exercise, both of my legs had a weird attack of pins and needles all the way down them, very odd. I didn’t tell anyone at the gym for a while because I thought it would just fade out the same way it faded in. But it didn’t, it just moved around in a strange fashion for weeks. I went to see my doctor, and he said it sounded like I’d trapped a nerve somewhere. He told me to come back if it hadn’t gone in a couple of weeks.

Anyway, nothing changed. The women at the gym said it could be a trapped nerve too, so I carried on working out, but every time I finished, my legs felt as though I was walking through treacle. I was referred to a specialist and he asked me if there was any family history of MS or Parkinson's. I said no. (I didn’t even know what they were!) Then followed various trips to neurologists, but all of their tests showed nothing. I didn’t even twig that seeing a neurologist meant that they were concerned about my central nervous system. I was sent for an MRI scan on my lower spine. I waited 6 months for the appointment because the specialist didn’t seem to think that there was much cause for concern! The results came back confirming that my lower spine was fine and that my central nervous system was healthy and intact!

Well, at this point, I took 6 weeks off work and went to meet my friend in Morocco. He’d just spent 6 months travelling around deepest, darkest Africa and his final destination was Morocco. So I thought sod it, they still didn’t know what was wrong with the old pins, so I might as well take a break. Absolutely wonderful country, incredibly poor, but so full of extremely interesting people. Their lifestyles were so far removed from anything we are used to. Their main concern was survival, not seeking just one more material object. (Mind you, I’m sure they’d be very materialistic if they had the chance, that’s just human nature, unfortunately.) The souks were just like going back into biblical times. I managed quite well getting around, considering Morocco was one of the most inaccessible places I’d ever been too. I had a few problems with crossing roads. They are very manic drivers and the width of the roads is quite huge. The combination of these two factors played havoc with my balance. After a lot of walking my legs felt like they were wading through treacle again, weird. I felt like I had been a Duracell battery but now I’d been demoted to a Tesco's own brand! I spent a few days in Amsterdam on the way back and found that the strength in my legs improved noticeably after a session with some rather pure cannabis, interesting!

One day, back home, I had a rather embarrassing bowel accident on my way to the gym and I casually mentioned it to my doctor when I was seeing him about something else. He took it very seriously and immediately phoned the neurologist to talk to him about it. It all seemed very dire but quite hush-hush. A last ditch attempt was suggested by my neurologist, who thought that I should have a lumber puncture done. What a horrible experience. Big needle in spine - aaagggh! The spinal fluid was extracted and analysed. I went to see him a week or so later, just expecting the usual, ‘sorry, the tests have come back negative’ scenario. But no, this time was something quite different.

The results came back showing that my spinal fluid had proteins in it, which seemed to signify an almost certain diagnosis of Multiple Sclerosis. There was one more test that I could have done, an MRI scan of my brain, that would show it up for certain and did I want to know? Did I want to know?!!! Jesus! I’d spent the past two years thinking I was losing it. In fact, one specialist had even asked me whether I’d thought about going to see a psychiatrist! Luckily, one of my sisters was with me during both of these last two times.

At this particular penultimate diagnosis, the first thing I wanted to know was, would I be able to run again (soon preferably)? No, I wouldn’t, came the reply! I didn’t take much in to be honest. I just stared out of the window feeling extremely frustrated, confused, devastated etc. I couldn’t get my head around the fact that I’d just been told that I had an illness where nothing could really be done. There was no cure; there was no prognosis. I can remember leaving the room and walking in the completely opposite direction to where I should have gone. I must have looked completely insane because a nurse came up to me and asked if I was all right. I just burst into hysterical sobbing mode. She took me through to a little room and ‘put the kettle on,’ bless her! My sister was still there. She must have been pretty devastated too, but she kept a very professional air about her, which in hindsight was wonderful, because I was in total shock. For some reason I kept saying ‘don’t tell Mum’! I was led to the information room at the front of the hospital and copious amounts of leaflets about MS were shoved into my hands, but nothing was really taken in. I was due to see Gary Glitter that evening, so I just got home, went upstairs, got all glammed up and went down the pub to meet everyone. I completely blanked off the previous few hours’ shenanigans and just carried on as though nothing had happened. I coped ‘too’ well. Gary Glitter didn’t turn up, probably too p----d! So we all went to another pub. My legs just went like jelly and my brother-in-law had to carry me to the pub. This must have been all the pent-up stress. Stress is one of the worst things to exacerbate the condition, I found out later.

Anyway, for the first 6 months after being diagnosed with MS, I spent a lot of time in the pub! I was drinking loads, then staggering home and drinking more and getting stoned. One of the funniest memories of having been diagnosed was when the specialist said that, between him and me, some neurologically challenged people had reported an improvement of their symptoms after having indulged in cannabis. I found it very ironic that, typically, I would contract a disease whereby dope would be of benefit! It’s been a recreational hobby of mine for years and suddenly I’m officially told (off the record or course) that this drug is wonderful! I felt like saying, ‘yeah, and?...’! Now and then I’d look at some of the leaflets briefly, in disbelief, and then put them back in the drawer. Everyone knows that from childhood we’re told that if you get ill, you see your doctor and he makes you better! Even now, 5 years later, I still haven't come to terms with this diagnosis.

Time has gone by, and a lot of life changes have been thrust upon me. I resent the fact that I had no choice in the matter. I’ve learnt loads about MS and I actually find the fact that my own body is attacking itself quite fascinating. I've realised now why the doctor, all that time ago, was so concerned about my bowel problem. I remember that things were hurried along a lot more around that time because the messages from my brain, to tell the bowel muscles to hold on, didn’t get through in time. This therefore had made it two problems, leg and bowel - i.e. Multiple! They couldn’t go on just the legs being a problem, because that could have been anything, but the two combined symptoms meant it was Multiple Sclerosis.

In the early days, the MS was not too bad, physically, and I was still cycling. Mentally though it was a very different story. I was going through the stereotypical stages of bereavement, which is what all this crap essentially is. It was when I went to Glastonbury festival in July ‘94, having been diagnosed 6 months before, that the s... hit the fan. If you’re in any way neurologically challenged then you’ll agree that festival toilet hovering and guy ropes are definitely Satan’s definition of the ultimate wind up!

As the years have gone by I have gradually got better at trying to get my head around all this surreality. The main constant concern is that I don’t know what the future holds for me. I know that no one really does, but, just when things seem to be looking up, something else happens. This continuous unwelcome guest hanging around would test the patience of a saint. I’m a very mellow person normally, but there have been, and still are, times when I turn into the banshee from hell and it’s always my nearest and dearest who gets it in the neck! It doesn’t help seeing other people with the same illness suffering much more than you. Some are doubly incontinent, tired all the time, in pain etc. and I’m quite lucky in that respect I suppose (touch wood!). There is a real sense of camaraderie with all fellow MS sufferers, even though no two people have the same symptoms, and there is that weird feeling which anything neurological gives you, a feeling which most people will never understand and hopefully never will.

About a year ago, my confidence had plummeted to an all time low. I went around to my partner’s place, walking incredibly badly. My legs would hardly bend at all. I was helped inside. I just sat there and bawled my eyes out, saying things like ‘what use am I to anyone’, and ‘I’m just on this awful pile titled DISABLED’, and ‘I’m a shadow of my former self’ etc. Basically, I didn’t see the point in me being a member of the community. I just couldn’t do anything any more. How could one person change so much in such a relatively short space of time? Rob felt totally helpless, bless him. He thrust a copy of some bike magazine into my hand, with a picture of a gorgeous trike in it. It looked wonderful, but because of my state of mind, I just thought that there would be no way that I would be able to ride one of those things and, anyway, say if I got worse, say if I lost the use of my hands etc - doom and gloom!

But, as time went by I started coming round to the idea. I remember that we bumped into Ross once at the Double Locks pub and him and his friend came and sat with us and told us all about the NABD. It all sounded very interesting, but then I was still going through my "forget it, I wouldn’t fit in, I’m not a biker" mind-set. As time went on I started to realise that a trike could actually be an extremely good way of meeting other people who also have experienced some form of life-altering loss and hopefully would have a ‘sod it’ attitude, life is still too short. I love having friends with MS, but sometimes it would be nice to know other new people, just for a refreshing change more than anything. The other huge difference I’m hoping the trike will make will be the distance I can travel. I don’t normally travel long distances in my car because it is hand controlled and therefore I only use one hand to steer, and my right hand is constantly pulling the hand control bar in order to accelerate. My arm aches much easier than it used to so I have to keep stopping to rest it. But, with a trike I will be able to use both hands to steer, which will mean much easier and safer handling and, therefore, many more miles covered! I will be able to travel again, wonderful! I'd written that off as well in my melancholic state. But no, things have to change.

I’m in the process of trying to sell a CX500 bike, which I bought months ago. It will not be any good as the donor bike. I’m going to be getting an automatic Ford Escort gearbox and the whole thing will be lower down, making it a lot easier to get on it. It’s all just a matter of time now. I’ve spoken to Sean from Creation Customs and he’s going to be building it soon. All I have to do now is sell the CX and get the grant from NABD sorted out, which I am incredibly grateful for. Things can get under way then, hopefully by July.

I know that this trike is not going to cure my health problems, but it will be an amazing buzz for me to be so mobile. The world will be my oyster, hopefully!