Which Box Do I Fit In 2nd February 2014

Over the last few weeks in conversations with friends and posts on websites with cyber friends, I have realized that many people seem to think that I fit in a series of boxes and/or stereotypes, often I do not challenge these presumptions, because first of all, why would I, secondly trying to explain to people that I am a much more complex person, can in itself be quite boring and confusing, as well as repetitious and lastly does it really matter.

Maybe rather than boxes I should use words such as stereotype, label, partly because these are broader I would hope, possibly it is a series of boxes or labels, but some totally contradict each other, so how does that fit in. What is interesting, is that when I tell people I am a Gemini and they have any slight knowledge of astrology and/or the signs of the zodiac, I then acquire a totally different label which is,” Oh that explains it, you’re the ones with the split personality, Jekyll & Hyde” personally, I do feel there is something in this, but it’s only part of the story.

Only today in discussion with friends, we were talking about my interest in musicals and where it came from, well I don’t really know, I do remember as a child listening to the Light programme on a Sunday, I think it was Benny Green’s programme, that talked about the latest musicals, also the history of the subject, it even opened with the Carousel waltz as its theme. Maybe I was brainwashed, possibly it was my dad’s fault because we used to watch Fred and Ginger, Frank Sinatra, Gene Kelly, Gordon McRae and Jennifer Jones in musical films, I will always remember my first big-screen musical Oklahoma at the Apollo in Wide Screen Todd A Ho,. But there again, I enjoy Nat King Cole, The Drifters, Glenn Miller, locally I enjoy listening to Affetside Choir, who sing a mixture of standards and more modern music. So now the box has expanded, what does it say about me now and my Musical taste.

In the last week or so in one of the Internet chat rooms that I inhabit, it was interesting to read people’s comments when I offered to meet up with a lady from the group and escort her to one of the other groups that I attend, as it was her first meeting with the people and she wasn’t quite sure, even the whereabouts of the building. People used words such as “gentleman” “pleasant” “kind” “caring” which did no harm for my ego, on that occasion I would most probably have ticked those boxes, but I have to be honest and say that there are many other times that I can be “thoughtless” “inconsiderate” would you believe “rude” well, yes, all of these are true, plus many other failings. Those that know me must be aware I am a chatterbox, but there again, what about all the times people say “do you mind if I ask you” or “what do you think” when seeking advice. Some more confusing boxes you see to describe me.

What about a totally different area, many people know, that I have been involved in social work in the past, in fact I am still, although retired trying to use my skills to assist others. It’s the looks of amazement when I mention in passing about jobs that I’ve had in the past. Some of you reading this will be aware that my career has had some strange twists and turns. Just to tell you some of the jobs I’ve had, I started out as an apprentice electrician, but gave that up after a couple years, I then went working as a tenpin bowling engineer towards the end. moving on to management, for about five years,I had a brief period doing maintenance in bingo clubs. I had the largest career change, when I worked in nightclubs as stage manager/ DJ for about two years,, I met many, at the time famous people, lots have died, or been forgotten since, e.g. Gene Pitney, Fame and Price, Stan Kentons band, The Comedians well known on TV at the time,. Next there was a period with what is now Scope, teaching young adults basic engineering and social skills to help them cope in the community. Oddly, this also lasted about five years. After a brief period in engineering, moving on to becoming first a signalman with British rail, then the clerk that sold you your rail ticket. So yes, quite a varied career, did I make the moves because of a change of interest, not really. Just seemed the right thing at the time, but can you see again, the lack of pattern and the inconsistencies with those boxes.

I was talking to a friend who I travel with last week, he said, as far as he could see from observation and conversation that I had little interest in art galleries and museums, and if I did visit them, spent little time in them. In a way he could be right, locally I think I have only been to the art gallery and museum twice, in the last 20 years,, neither time to view the exhibits. When in the company of others who want to visit museums, often I spend only a short time looking at the exhibits, if they are of little interest to me. All goes to show that he must be right. Well, as with most things, this isn’t quite right, it’s those stereotypes and boxes coming out again, you see, I pick and choose when and where I wish to indulge myself in these sorts of places. For example, the Science Museums, locally and that in London, I could spend hours and hours and hours in looking at the exhibits. But recently I went to the British Museum in London, and because of the noise, crowds and limited interest, after two hours I had had enough. Last year, as some of you will know I went to Bergen in Norway and visited an art gallery there, enjoying a whole range of works of art, that I had never seen before, maybe it was to do with an acquired interest in one particular artist, or maybe it was just the start of something new. My interests and hobbies have changed over the years and I hope I am not closed off, but open to new experiences, some that will give me pleasure others that I will choose to take no further, so what does that say about me again. Maybe sometimes what we see is not really a reflection of what is actually happening, but also depending on what attracts my attention on a particular day will totally change my view or interest sometimes.

When younger, I always wanted to meet that perfect girl who could put up with me, I would marry her and we would have children, then living happily ever after. I think unfortunately this came over in relationships. I had as a young man, I was the sort of person that mothers wanted to marry their daughters off to, but the women found people like me boring, there was no excitement. Another few boxes there to put me in then. Well fate decided something else, and one day the girl I was going out with(someone finally took pity on me LOL) informed me she was pregnant, subsequently she had our son, but decided to go on her own path and finish with me. Maybe I should say to be fair, I was not in love with her, but felt I should do the right thing, could be that’s why she finished with me.

In later years, what was fascinating was when I told people about my son, who sadly I was not seeing at the time, people seemed to think, it impossible for me to have had that sort of relationship, I must admit, it came as a bit of a shock to me at the time. I still wanted to meet that perfect person and have that perfect relationship with children to follow. I eventually did marry, but sadly there were never any children, apart from my stepson and some contact with my own son when he grew up and married, with his wife and children. So, unfortunately, even the boxes I wanted to tick did not work out, but why did people think it was so odd and didn’t fit their understanding of me that I could have had my son outside of marriage, I never said I was that well behaved.

In the 1990s I acquired a new box for people to place me in, I became ill with ME/chronic fatigue syndrome, which had a massive impact on my life in every way, including my marriage, employment and quality of life in general. I still have this health issue, but now I have a whole range of other things to put up with. Well, the new box is, Disabled, its quite ironic really, given the work I had done with people who had a disability and the range of people I worked with as clients in hospital, helping them to come to terms with their treatment, illness and prognosis. I always felt at first it was a temporary thing, and would quickly go away,

20 years on I still have that initial illness, plus as I say other health issues to frustrate me and my quality of life. I remember one day being at home some years ago, when my stepson came in with his friend and him saying ”that’s my dad . He’s a bit disabled” well that’s a box isn’t it, I suppose, in actual fact it was correct, but it didn’t make me feel any better. I have tried to ignore when possible, these labels to do with disability, but sometimes, like being paid benefits and having my blue badge, because I fit the official label of being disabled, it helped me in the real world, by at least enabling me to be part of society due to the money and resources available because of my health issues, .when I feel able to. What makes it more confusing is that on a good day I look and sound okay, so people treat me as “normal” on a bad day, nobody sees me, because I stay at home and rest, this must be confusing to those who do not know me well enough, and sometimes even to those that do. I do not feel my disability defines me, but it can be a convenient box, at times, both for me, but also for people I meet along the way. But I hope people can see that I am still in there trying to cope and get on with my life, in my own way.


Well I hope you have enjoyed the read, also that maybe, it will help people to think about putting people in boxes and stereotyping them, something I try not to do, but have to admit on occasions I am as guilty as everyone else, but will try harder in the future.

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 Beginners Guide To ME 21 January 2013

This was originally written back in 2006,but updated with the help of Caroline Higson recently

I have read other peoples comments elsewhere & hope that my thoughts may help some who are new to the condition, having had ME for about 20 years & actually finding I have improved over the years, but am not fully recovered. I hope the information listed may help others along this difficult path.

Firstly try to find a sympathetic GP who has some interest & or insight into ME, I have learnt along with my GP over the years things that can be useful for me, the largest is that she is willing to listen and not write me off, remember you can change GPs if they are not helping, also it is possible to complain about poor service from them.

Accept that your life is going to change, often drastically, but that
ME will not kill you in itself.

Explore if you have other co-existing conditions that are treatable, I discovered as others have, that there are other health issues that could affect how ill we are and the pain and distress we deal with. I have arthritis of the neck & spine as well as RSI in my right hand & arm. Certain exercise & massage help to relieve the pain to do with the arthritis; the RSI I feel is made worse by using the computer so much. So please do think about the time you spend sat at a computer.

The new answer is technology & voice recognition. What a relief it was to find there
were other answers. Therefore this takes away some of the stress & pain that I related
inappropriately to ME, I struggle with remembering the more complex things it can do, but once set up it makes the task of writing so much easier. I use Dragon Naturally Speaking

Try to find some way to develop a more positive attitude, mine was to laugh at myself & the stupid things that I did & do even now, rather than withdraw even more, leading into greater unhappiness. Never forget that you are still a part of society and you still have a whole range of knowledge skill and experience to offer.

Be open with people about the condition & the effects it has on me, such as the fact that I need frequent breaks to rest & sleep even in my own home when we have visitors & that sometimes I cannot come out to play however much I want to. But also to allow me to decide as and when I want to test or ignore the boundaries.

To try to accept I cannot live life in the way I once did, setting myself impossible targets that others would never of expected in the first place of me.

To accept I have a disability, but then to obtain help to cope from all sorts of sources such as

Obtain a Blue Badge

Apply for a concessionary bus pass or taxi vouchers

Explore Shopmobility schemes

If employed apply to Access to Work for assistance as soon as possible, either directly or through your employer, even if self employed help is available

Claim PIP, Attendance Allowance & any other
benefits, but ideally let a professional assist with the filling in
of the form & the gathering of information to support the claim, but look at the Benefits and Work Guides

Ask for a Community Care assessment from social services, because you
are disabled & a Carers assessment for anyone who provides care to
you ( don't tell them initially what help you need that's their job &
you are entitled to the assessment by law).

Ask for an assessment by an occupational therapist or contact
Disabled Living Service in Manchester or the local branch where you live,to see what help is available in practical terms, such as bottle openers, chairs, bath aids ( don't
go out & spend lots of money when you may be entitled to these free
of charge)

Check out with others what sorts of treatments seem to work, beware
of expensive ones that nobody seems to improve from, or nobody else
has heard of. Personally I have been receiving treatment from Dr Raymond Perrin and Gail Sumner for some years and it has worked for me, but thats only my experiance

The biggy is try to PACE yourself & set realistic limits on what you
can do, yes you will have good days & sometimes get away with over
exertion, but if you have a relapse through bloody mindedness how
does that help how you feel ( boy do I know this one)

I found that a support network of people who I could ring & chat to even if I could not get out helped with the isolation, but also who would ring me made me feel valued.

Remember that you are still a person in your own right & not a victim, & are entitled to opinions & views about your life & society as well as the things that are important to you, despite the fact sometimes stringing a couple of sentences together may be difficult to do

I was reminded the other week that most of us did have a career & life before ME and some still do so we still have things to offer to our friends family work & society, although we have to sometimes pick when & where.

Obviously these are only some of my thoughts & may not be appropriate for others or maybe will provoke discussion, but at the same time I hope may ring a bell & help some along the path of coping with ME.

Guess what my back is now aching so will close but be interested in people’s comments.