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.

A Funny Old Year 10 December 2013

As we are approaching the end of the year and its early morning and I cannot sleep, it seemed a good time to give you readers an update on my thoughts and experiances over this last 12 months.

Where to start, maybe a reminder of a couple of good things such as my trip to Scandinavia where I went to Copenhagen with Brian,  then on to my holiday of a lifetime with Mykle and Jean in Norway,  not only did i have a holiday with them but found them to be two lovely kind people who had created a beautiful home out of nothing in such a beautiful setting. It was also a reminder of what i could achieve despite my bad back and other health issues.

The next good thing was that at last I had my TURP operation to help with my waterworks which will help in a number of ways for the future, the other good thong was that the doctors told me there was no underlying cancer which was a relief. Another bonus hopefully out of this was that, due to my complaint to the hospital the quality of the toilet paper will improve on the ward.

For some years I have been looking for different ways to spend my time that are more pleasurable,  I had been aware of the U3A organisation for some time and finally made an effort,  joining earlier in the year, I think I will write briefly now and maybe do a longer blog of my experiances with them another time.

I have been to a number of the main meetings and talks at U3A, which have been enjoyable, meeting new people in a social setting, plus I have joined a recently formed photography group within the branch, which is a pleasant mixture of people and skill levels. I also briefly joined a beginners group with them for Spanish,  but found I did not enjoy the style of tuition, I wanted to order a drink or meal not to know the waiters name, so gave it up.

Updated 12 December

As part of this I have become involved in creating a new database of members to more easily track the membership and their interests using a product called Cardbox, again more of this maybe in a future blog, si seems it was a positive move and has widened the circle social contacts I have.

Out of the blue earlier this year I started with nose bleeds in my right nostril which I have not had for many years. They seemed to get worse over about 10 days ending up in a trip to A & E when it would not stop eventually 3 hours later it stopped at the time we were in the middle of a heat wave. I got outside waited for my lift as it arrived, off it set again, this time they admittef me, put a plug up my nose and kept me overnight, the next day cauterised it and sent me home. Within an hour it was off again so back in for a further four days, I was amazed how many people came in during this time but unlike me were quiclky discharged. Finally they took the bung out and cauterised again, so far no more problems.

I forgot to say earlier in the year I finally bought this tablet which was a great buy, as I can read e mail when have access to Wi Fi, search the internet and do many other things when away from home including listening to my music and doing tasks such as my blog, which am doing in bed again as cannot sleep, oh I forgot I can also read,  I have plenty of reading material on it in fact I would imagine sufficient to last me the rest of my life

I went away with Andy and Brian to Newquay as recorded earlier, think I will look carefully at the length of trips in the future if on a coach or other forms of transport.

One of the things I wanted to do was to see Chorus Line the musical in London, again as I recorded on here I managed that plus to meet up with ex saga friends for a trip down the thames and then across it on the new cable car.

I asked my son what he wanted for his 40th birthday, he said a trip to the Grand Canyon it looks like finally next year we will manage this, together with a brief visit to New York and Las Vegas, I am advised that this will be best carried out in November, since then I have devifef to extend the trip for me after he returns from Vegas,  and then depending on whether my friend in Hawaii is available to visit there, otherwise to go to Australia and finally see Sydney and other places, before travelling on to Penang to meet with my friend from childhood, then possibly to visit Singapore and see the lights before returning home.

The trip may be the last long distance one other than possibly if I finally get to my safari which I have talked about for years, the sad thing for me is that at present I will be on my own, which will be enjoyable but I dont think quite so good as having someone to share the experiences but who knows whats round the corner

Over this year our ME group has created more social activities which I have enjoyed plus I now am assisting on the committee and am an active member of the Facebook group we have,  which has helped people cope with the isolation which is so often part of this condition.

The flat has finally had a coat of paint on all ceilings and woodwork and hopefully in the new year the living room will be decorated, it would of been done much sooner but for the problem of finding someone to fo the work, its odd that when so many are looking for work my trying to find someone to carry out the task has been so hard

Earlier this year I changed my computer and decided to use voice recognition more, its bern a mixed thing due to a number of reasons, I do know it is helpfil and encourages me to sit bettet on my seat improving posture and lessening back pain,  what I should of done was to have further training so I could do even more with it  and lessening the the effects of typing on my hands and arms, one of my resolutioms is to do this in the new year.

One of the other issues, has been the fact that I have been transferring my LPS,  (for those to young to know these are the large vinyl records we all used to listen to our music on in the past, ) onto my computer, part of the problem is that I cannot use both the microphone and input from the record deck at the same time, so have to disconnect the leads and alter the settings on the computer. The task is still not complete, but I am getting there, so far nearly 300 done.  The hope is that I will be more likely to switch off the tv and listen to the music and maybe do more reading instead
,

A couple of months ago I joined a course to help people who have long term health or disability issues to cope with the symptoms and pain not as a cure more in becoming better at dealing with it, its run by an organisation called Breathworks and is based on Buddhist teachings but without thr religious aspect, I found it helpful and feel that it will help me to move on in how I deal not only with health issues but also generally in life

So a busy year of such contrasts, some of the things I hoped to achieve have fallen by the wayside but also other doors have opened that I did not expect.