Together with M.E.
I got together with Mike in October 1997 after having met him only one month earlier. I had had M.E. for eighteen months and he had been ill for seven years. Some would say we were foolhardy when we were both ill and trying desperately to get better, but we think it was the best thing we ever did. We're still searching for that elusive cure but we try to live as normal a life as possible under the circumstances, albeit at a very low level of activity. It's difficult at times but each of us feels we've found our soul mate. We wish we didn't have M.E., or had met before we got it (as we would have loved to have had a child if we'd been well enough), but credit it with at least bringing us together. So how did we come to be in this situation?
I was a 32-year-old mature student in Bristol when I became ill with a virus in 1996. I had loved studying since I gave up my secretarial job to return to full-time education in 1990, and had gained two degrees during those years. A long-term relationship I’d been in since I was 21 was, however, more stressful and my health had been up and down throughout my twenties. I’d had Irritable Bowel Syndrome since I was 22 years old and always seemed prone to viruses, especially during the winter, which left me feeling weak and debilitated. When I got another virus in March 1996 I thought it would be gone in 2-3 weeks, as was usually the case – how wrong I was! Despite trying to continue as normal and even exercise myself back to fitness, I couldn’t regain my health and ended up moving back from Bristol to live with my parents in Nottinghamshire.
Mike had moved from Manchester to Wales in 1983 and had successfully set up his own business. However, he was working with chemicals and in 1990, after injuring his back and having prolonged dental treatment, he came down with a virus. After a week off work he returned to his business still feeling weak and terrible but determined to carry out his contracts – after all, there was no-one else to do it for him! Despite being told by a herbalist that he would do himself lasting harm if he did not rest, he continued to try and push himself through it. This was the worst thing he could have done and he now considers that this is one of the reasons why he’s been ill for so long. He struggled on for some time but, in the end, had to reluctantly call it a day and wind up his business.
Over the years Mike has tried everything and anything to gain some improvement in his health, from Hyperbaric Oxygen Therapy to Spiritual Healing to Gamma Globulin IV. Nothing has worked for him. I have also tried a number of things, including Reiki, massage and herbal medicine. I found the increasing isolation of my situation very difficult to cope with so I joined the local M.E. group, but found that most there were married and a lot older than me. My life felt like it was on hold as I couldn’t live independently or get a job. I hated being reliant upon my parents but could do nothing about it and felt no-one understood what it was like to be single with M.E. That is when I chanced upon an advert for M.E. Singles (no longer active) through one of the M.E. charities.
I joined the group at the end of 1996 looking for single people, both male and female, in a similar situation to myself. Mike had also joined that year and, in the following May, we got in touch by letter. This developed into phone calls as we swapped life stories and got to know each other better. I remember that there was a particular day when I felt in deep despair because of my illness and what the future held and, at that moment, Mike phoned and I felt it was as if someone or something knew and had brought us together. We talked, even though it exhausted us both and often gave Mike Migraines afterwards. At last, in September 1997, we talked about meeting up, although both of us knew this would be difficult. One thing Mike could and can still do, if he rests sufficiently beforehand and afterwards, is drive. We arranged for him to come up and stay for a week, and I think when we met we both knew we’d found our soul mate. We couldn’t go anywhere and even talking too much made us feel exhausted and ill, but just being together was enough. A few weeks after Mike's visit my parents drove me down to Wales and deposited me at Mike’s flat! Initially, we thought we’d see how things went, but it was quickly decided that we couldn’t be apart and, for the most part, we haven’t been since that time.
In 1999 we moved to a small cottage nearby and two years later we got married in a very small, simple and short ceremony at a local hotel. It was not exactly what we would have chosen if we hadn’t had M.E. but it was all we could manage. We didn’t want to put our lives on hold in the hope of one day being well enough to do the things we wanted to do, but tried, and still try, to work within our limitations. I’m not sure whether it’s easier or harder living as a couple when you both suffer with M.E. but it’s for better or worse. It’s easier in that we both understand each other and what we're going through, but harder in that we can’t get away from M.E. as often when one is not feeling too bad, the other is feeling ill, and vice versa. We do achieve things though, in our own small way, things that well people take for granted and, after waiting so long to meet each other, we know that we are meant to be together and are soul mates, M.E. or no M.E.
In 2010 we decided to move to a bungalow in mid-Wales, close to the Powys/Shropshire border, as the drive to my parents in England for a visit and stay was just too much for us; here we are half-way between both sets of parents. We can park outside small local shops but continue to rely on the internet for food shopping and other goods – essentials and non-essentials! We use local firms who deliver and, of course, the internet has been a godsend, especially as I used to love shopping. We have a cleaner and someone to cut the grass and do the jobs we cannot do.
Once we had settled in we decided to set up Montgomeryshire M.E./Fibromyalgia Group, meeting locally every 2-3 months (more frequently has not been possible due to our illness and limited energy). We were helped by the Mid and West Wales M.E Group, now called WAMES, in this venture and it has been a great success and has led to us meeting some lovely people. This has also brought us into contact with a lady from NeuroVoice Powys, who campaigns for sufferers of neurological conditions, helps raise awareness and helps with benefits.
Whilst I am not better and still have low energy and stamina, I have had some improvement and a stabilisation of some of my symptoms since 2007. The main reason for this is that I found I have Hashimoto's Disease and was put on thyroxine in 2001. However, it wasn't until seeing an endocrinologist privately in 2005 that I realised I wasn't on a sufficient dose of T4; an increase combined with T3 has led to some improvement. In addition, I found that mainly staying off gluten helps my IBS. It took me 10 years of very poor health to gain some improvement and another few years to get where I am now. Whilst I can't do things others take for granted, I can get out sometimes, although I still have to rest before and after activity. I can read a little more than I used to be able to and I tend to be the one to use the computer to order food, etc. In 2014 my mum died and I began the Menopause – both big life events – but I'm physically coping better than expected (long may it continue!), although I do of course miss my lovely mum. I will continue to seek further improvement.
Unfortunately, Mike has developed more symptoms since 2007. He had been relying more and more on medication to help him but had to withdraw from all medication in that year as it was causing him more problems than it was helping. This led to him discovering that he had Intolerances to some foods as well as medications; in fact, anything he had a lot of caused him leg pain, cramps, headaches and palpitations. He has always had a problem with migraines since first becoming ill and these can affect him fairly often as, after a migraine, it takes him a full 48 hours to recover. When migraines are a little less frequent, his cognitive abilities are still severely limited, as any reading, computer work and watching television can bring on a headache or a migraine (yes, they are very different!). He has tried lots of things to overcome the intolerances, pain, migraines and headaches he suffers, but anything he has tried has worked for only a short time. He is also very sensitive to lots of medication, so he can no longer use it to ease the pain he gets mainly in his legs, which are also very weak. Mike uses a seat-stick when out and he drives an automatic car so, as I can walk better than Mike, between us we manage to get by.
It can get very lonely at times when you have M.E. and few outside the M.E. world can or will understand. If our story has struck a chord with anyone who feels they are struggling along in a similar way, it would be great to hear from you.