A Glass Half Full Or Is It, an update on how my health has affected my life over the last few years. 21st of January 2014

Recently I read blogs by smallfry182 http://smallfry182.wordpress.com/author/smallfry182/ and her mother soxandcinders http://soxandcinders.wordpress.com/2014/01/18/i-was-once-normal-how-it-all-began, regarding their experiences with ME/Chronic Fatigue Syndrome,(I must apologise as I have not worked out how to post links yet) which have prompted me to post an article on here that I originally wrote back in 2006,(please see below) about how to cope with ME, based on my own experiences. After thinking about it I have now decided to provide an update of what has gone on since that time and how I am coping these days with the condition. Also how other health issues have impacted on my life in both positive and negative ways.

Back in 2006, I’d given up my job of 17 years and was working for a small charity part-time doing telephone advice on social and welfare issues, providing independent social work reports and acting as an advocate to a range of people through the organisation. I feel that my own history of health issues since the early 90s made it easier to assist people in the course of this work. Also at work I had gone through various assessments and provision of equipment to make it easier for me to carry out tasks, what is interesting when I look back is despite all of these assessments and equipment how often the experts got it wrong. I was supplied with a chair for work that I later discovered despite the fact is a cost of thousand pound it was not supporting my back correctly, the first set of computer equipment and voice recognition software never worked properly, it was only as I discovered more about my needs that I finally acquired the equipment that would help me best.

I had been treated by Raymond Perrin the osteopath since the year 2000 on a regular basis and my ME was much improved, many of the old symptoms disappeared, such as problems with perfumes, strong lighting, loud noise, also I was eating a more varied diet, unfortunately I started having problems due to arthritis of what I thought was sciatic pain. At some point in this period he referred me to the physio Gail Sumner, who also had ME, but who had managed to recover and now was treating people for the condition as well as for normal health issues. Because the sciatic pain did not cease my GP prescribed a drug called pregabalin, which seemed to ease the pain, unfortunately it seemed to dumb me down even more than the ME and I was constantly falling asleep, even at times whilst sat at the work computer. The GP referred me to physio at the local hospital, who put me through a four-week course for back problems then discharged me. Both the physio and osteopath were unhappy with this and felt I needed an MRI scan, I therefore paid for this privately after seeing a consultant also privately, he explained I had a condition called spinal stenosis as well as a prolapsed disc, that I should have been referred to him by the physiotherapist, so he was willing to treat me under NHS. He explained that he would try injections and if they did not work he could then operate on me to resolve the spinal stenosis He did injections that did not seem to work into the spine, on the second occasion these worked, but I was still having pain in my lower back he said this was to do with the disc but he was reluctant to operate on this because he could not guarantee the pain would disappear.

During this period I had realised that my marriage was not going on a path that I hope for, we were spending less and less time together and both of us were unhappy. Because it had worked in the past I decided to go for marriage counselling, my wife chose not to go down this path for whatever reason. One of the things that I took on board from the counsellor finally, was that the only person we can change is ourselves, for better or for worse, that by our making changes there was faint hope that the other person may also change but not to rely on this. I decided in the end for all sorts of reasons to move out of the family home, initially for a trial period of six months. I explained to my wife that this was no the person, that I felt the marriage was going nowhere and that may be having time away from each other would be helpful to both of us. Initially I went into lodgings which were not very successful. I actually found the quality of my life otherwise improved and in the end decided because my wife seem to be stuck in her lifestyle to seek a divorce. This was a painful experience for both of us I felt because we were both experiencing health problems. She stayed in the family home and I moved into a small council flat. My ME actually seemed better at this time, maybe because some of the stress had finally abated, but also because I was now seeing the physio Gail Sumner on a regular basis and she was also treating me for my arthritis which I had previously attributed the pain of to my ME.

It was during this period that I discovered a website called sagazone, it was for us over 50s to chat on, write blogs and share thoughts and feelings. I had never been into this sort of thing previously so was quite wary, I came across some quite unpleasant people early on, but through reassurance of other members of the site stuck with it, initially writing blogs as well as reading others, I came across this Scottish lady, who now lived in Holland who wrote under the name of honeycook, her blogs were a joy to read and we became cyber friends, as time went on I joined in various chat groups on the site and eventually even met up with some of the people, some who’ve become good friends. There was even a part of the site for those of us with ME and Fibromyalgia. I also got chatting to a lady in Hawaii of all places who also has ME and we have been in contact occasionally over the years.

I’ve actually found that this new cyber life opened all sorts of doors even when I feel not particularly well, that I can chat to people who are in a similar situation, where we can offer mutual support but also at times to meet in the real world, I have also met a range of people who don’t have health problems, where I can join in as and when I feel up to it but at other times resort to the websites such as Facebook to communicate with family and friends decreasing the social isolation. Sadly saga zone closed down, I was amazed how bereft so many people were at the loss, having said that new sites have been created and people fortunately had already often made contact outside the website already.

Around 2008 I was finding I was getting quite breathless but could not understand quite why, after extensive investigations it appears I had angina, I could not believe this is I have never had apart from one occasion any symptoms such as these headaches the people seem to suffer. When talking to my GP she explained because my exercise tolerance is so poor I was unlikely to ever do anything that would put my heart under that much pressure, not sure that says a lot about me. Eventually I had stents fitted to my main left artery, the problem was between my ME and arthritis I was unable to carry out the rehab programme so I have never been able to obtain a full recovery.

I am not sure quite what happened with my ME because the symptoms seem to of abated to a great degree and generally I do not now practice the exercises I used to do daily, instead I seem to have more and more exercises to help cope with my arthritis throughout my body, at present I am seeing to physio’s every 2 to 3 weeks privately, which fortunately I can afford because part of the cost is reimbursed through a scheme I belong to. When discussing with the physio about this I did ask where would I be now without the treatment, in her opinion my body would be much more locked up with much less movement and either more pain or increasing doses of painkillers, so I think I will continue with this treatment. What I struggle with is why I find it difficult to commit myself to the level of exercise that I know would improve me. At one time I saw someone who taught the Alexandra technique, everything he said about posture etc all made sense, I was seeing him weekly and paying for the privilege, why then did I choose not to go with his recommendations, I don’t know if it’s an ME thing or some other reason, but there does seem to be a consistency in this.

I finally gave up work in 2009, based on the orthopaedic surgeons recommendation, that sitting at the desk and using the computer was not helping my spine, because I had been placed on incapacity benefit for life back in the 1990s, despite the fact I had chosen to continue working, so was unable to receive this. My presumption was I would quickly be assessed then receive benefit to make up for my lack of wage. Sadly my timing was poor, a new benefit had been brought out called employment support allowance, with much stricter rules and poor assessment criteria. I will make a very long story short (quite unusual for me) and say eventually after lots of hard work I finally was paid the benefit until it reached retirement age. I do feel for those who are not used to the benefit system the endless paperwork and the poor decision-making that is taken causing much distress to many people who should qualify. It’s quite interesting that at a time when more and more people are struggling to claim money from the state that they are entitled to, that the funding to many organisations who would have provided help and advice has been cut so drastically and that now there seems to be an agenda in this country, that benefit claimants are fraudsters and should be sent out to work whatever their situation, let’s hope one day common sense will once again prevail. Most of the people I know who are ill would love to return to work but unable to do.

When I retired I continued to work with a number of clients who was still on my caseload until their are issues were finally resolved, it helped me in the transition and I was supported by my previous employer. At the same time I started to look for other things to do, and started to have more holiday breaks in pleasant surroundings where I could indulge my interest in photography and travel as well as working with the local shop mobility scheme. During this period in 2010 I started with another health problem, this was to do with kidney stones although I was not aware of this at the time, on the first occasion I experienced pain the like of which I had never had in my life, which resulted in me having a series of short stays in hospital over a number of weeks. Fortunately this eventually abated but resulted in further investigation by urologists, three years later I ended up having an operation on my prostate. I had felt that this was going to be an extremely painful ongoing issue, but amazingly I suffered no pain, apart from whilst in hospital when there was a blockage on a number of occasions finally all this calm down and I was discharged from the Ward. Unfortunately whilst I was on the Ward the man in the next bed who was elderly and had some form of dementia, had many problems mostly down to a lack of attention by the nursing staff, although I should have made a complaint whilst on the Ward I left it until after discharge, I do hope that by doing this it will have helped other people to receive a service.

I had been a member of the local ME/CFS group since the mid-1990s but had had a break for a number of years as I found it difficult to hold down a job and attend meetings. When I retired I started again attending and because there have been changes in the group decided to play a more active role, one of the difficulties about our sort of group is that there are few people who have the energy to carry out the tasks that make it successful. Fortunately over the years despite that much good work has been achieved, I decided that it was time that I gave something back to the organisation sort now have taken on more responsibility through the committee. I am not sure where this will lead yet, but is good in that it helps keep me motivated and involved in supporting others with the condition.

Three years ago I came across a former client who wanted advice from me about his mother and the fact she had been placed in care. I became involved thinking this would be quickly resolved, nearly 3 years on a decision was finally made by a court that she should stay in care, I have supported the young man as his advocate over this period, attending all meetings with him, solicitors and court hearings. There has also been issues regarding the funding of the placement, unfortunately this is still not been resolved fairly as far as we can see, so I am battling on with this element. What I had not realised was how much of a toll this would all take of me, part of me says it’s time to finish it and get on with my life, because the son has little involvement these days, but bloody mindedness says I should fight it through to the conclusion, at least for the benefit of other people in the future.

I find it harder these days to deal with tasks both physically and mentally, it is made even worse because I had always been independent and sorted out many things myself, whereas now things such as decorating I need others to do for me, but do struggle with the fact it is so hard to find a good reliable person to carry these tasks out however much they charge. I find things such as the TV and the recorder much harder to cope with, particularly when if I fast forward on occasions, the sound is lost for no apparent reason on the TV and there is no quick fix. I find the ever-changing things such as email on my computer harder to cope with, and this voice recognition I am using, due to poor short-term memory, that however clever it is, not being able to use it in the sophisticated manner it’s possible to do, quite frustrating, is it down to the ME, is it I am getting older and falling behind in technology or is it all part of life.

Despite all the above, I do feel my life is not so bad, in the last 12 months I have had a range of good holidays as you can see from my previous blogs and at present I am planning another two this year, my health is much better than some others and I have enough food and warmth at home, plus a range of friends and acquaintances to keep me occupied. More recently I have joined a new organization U3A and enjoy the mixture of people and experiences there, I have even joined their newly created photography group which is opening new experiences for me.

Therefore, where would I be if I had not had the ME, I just do not know, would I have been more successful, would I still been married, with my quality of life been even better, I’ve chosen in life not to look at these issues. Because what would I achieve, I have made mistakes along the way and presume I will continue to do so, at present life is not so bad. Let’s hope it continues to be so.

Thanks for taking the time to read this blog.