Only 2 more weeks to go to safari 22 June 2014

Well its not long to go now before the big adventure,  I think I have most the things I need like insect repellant, South African Rand money, I have just paid for a lounge pass for the airport so I can relax and have a shower hopefully before the flight, but also ordered flight socks and sorted out my seat on the plane. Just found out my international plug adaptor is not right, so back to thr shops for another.
Think I have all the leads and adaptors for camera etc and hopefully have enough memory cards for my camera and camcorder. How times have changed over the years,  when we used to send postcards from our destinations and never thought of being in touch whilst away whereas now by the magic of technology I will be able hopefully, to keep you readers up to date with the help of the internet and Wi Fi.
I have yet to check everything will go in my case, I would prefer to take the one, but have a luggage allowance to take either a larger case or two smaller ones. It's going to be hard to decide just how many and type of clothes that I will need, for the variation of temperature and environment, plus sunscreen,  aftersun extra shoes and layers of clothes. I have yet to put a range of music on the tablet for the trip but have enough in E books to keep me going for a long time.

Safari here I come 9 June 2014

Well folks the safari to South Africa is not far away, I did worry last month when I had problems with my health,& mainly my back started to play up but also I started getting something that felt like electric shocks down my right arm. Luckily due to Gail and Andrea the physios things have improved, just now have to do more exercises to prevent a re occurrence.
I have had all my inoculations, I had read about monkeys being about the lodge so decided to have the rabies one as well but after buying it was warned I could have a bad reaction to it, so at present have vaccine in my fridge, sob sob. I did contact Saga who are arranging the trip, their view was, if I dont bother the monkeys, they will leave me alone, maybe I should of contacted them first.

I have bought a camcorder for the trip, couldent believe how small it is but can be used as conventional camera also. I have had to buy extra clothes for the trip, that are dark colours for when on safari, but also needed a mixture of warm for the early and late trips out but lighter for the middle of the day, have a list of things need for the trip such as special adapter for their electrical sockets, insect repellent, luckily was able to get this trip in a malarial free zone so one less tablet and adverse reaction to worry about, but have strong painkillers from GP just in case I need them for other aches and pains.
I had decided that when I found out I was travelling with Virgin that I would upgrade on the plane to their economy plus both there and back, because it would give me a better seat and more legroom on the 10 hour flight, I also joined their frequent flyer scheme in the hope it would help for future trips, also Saga had arranged for me to be picked up from home by car and transported to London by them. It was only the other day that I realised how much travelling was involved on this trip. I am being picked up at 1 30 pm on the day, then down to London for the evening flight at 9 30pm, then there is a trip of approximately 3 hours after to the lodge so it looks like in total is will be in excess of 20 hours before I reach my destination.
Well I will close for now but give more background on the trip as I get closer.

The big trip later this year

Some time ago I mentioned about a long complicated trip I wanted to do whilst I could this year. It started with wanting to do a trip with my son to belatedly celebrate his fortieth birthday, when he said he would like to visit the Grand Canyon. This should of happened a couple of years ago but for my health problems, but they made me realise that this was a chance to fulfil some of the places on my Bucket List as well.
So on investigation it seemed we would have to travel to Las Vegas to do this, which suited me because although not a gambler I had always wondered what it was really like,  plus the shows and the Strip intrigued me. Son was only able to have a number of days holiday, plus it needed to be towards the end of the year.
I decided if I was going to do a trip such as this why not do a little more whilst away, so the plan for the big adventure started, I then thought well why not stop off at New York on the way, because previously I had not managed to see all the places I wanted and for reasons I cannot explain I had always wanted to travel on Staten Island Ferry and see the Statue of Liberty close up. I contacted son and asked would he like to add this to the trip, he did not seem to need much encouragement to do this also, so now we had two destinations.

When I looked at Google maps I thought maybe it would be a good time to travel further, so considered Hawaii and a visit to my friend Sofi, who had met up with me over here some years ago. I e mailed her a number of times but have heard nothing, so decided to cancel that but to continue the trip to Australia,  somewhere I had planned to return to many years ago but not got to again so far.
I thought about this and decided again on my list I would like to visit Sydney,  Ayres Rock and maybe the Great Barrier Reef, I then had another look at maps and decided I could indulge myself elsewhere and visit my friend in Penang which I had wanted to do for a number of years, also to see the Christmas Lights in Singapore,  which again had been on my list for many years after a brief trip there back in the 1990s when they were starting to put them up.
WOW this was going to be some trip, but I had realised if I did not do it soon, my health age and travel insurance costs, may prevent me from carrying it out, at this time I had not planned a particular length of time for the trip or a budget, so decided to contact my friendly travel agent Sue and talk it through with her as I did not think I could visit the places I wanted with conventional tours. She came to visit me and gathered information on duration of visits and the path I intended to take and went off to explore options for the trip, it now lookef as though it was on.
When I had time to reflect I thought that there were a few negatives for the trip, firstly, after my son went home I would be on my own with no travelling companion to share the experiences with.But previously when I had hoped to do it with someone special it had fallen through, so maybe doing on my own and seeing who I met on the way would add to the experience, the other things I have had to consider relate to my health, firstly how will my back and pelvis cope with all this travelling, also as I now wear hearing aids it maymake it harder to hear and fully experience some thongs, plus it may make me more vulnerable ad a lone traveller

The Ups And Downs Of Health 2 June 2014

I am sorry readers that I have been so quiet for a while,  but my health has interfered yet again. About two months ago my back went into spasm  and I kept getting pains down my right arm that were like electric shocks. I was aware at the time that I was spending far to long on the computer trying to sort out my holiday in November,  but more of that later in another blog.

The effect on things I could do was quite dramatic, I cannot explain how troubling the pains down my arm were, luckily if thats the word I had had a similar pain in the past and that prompt physio usually resolved it. So off to my two favourite physios Gail and Andrea for treatment, these were topped by Silvain another physion if and when the others were not available, despite their best efforts the pains down the arm did not abate for some considerable time, i am still getting twinges now in fac, it was possibly six weeks or more seeing one of them at least twice per week before there was a lot of change,  but at least they managed to reduce the pain in my lower back. To help  I was taking strong painkillers but only when pain was really bad because I knew the effect they would have on my quality of life and the limited quality of life I would have, also they did little to help with the pains down my arm. The other thing I was doing was having hot and cold compresses frequently through the day to try to reduce the inflamation.

This was all a wake up call and from discussion with physios I realised that I needed to do more exercises myself at home and also to work on my very poor posture as that was making things worse. It seems my right shoulder is coming forward due to this and my arthritis and needs a lot of effort from me to slow it all down. Also I now worry about what would happen when on holiday particularly when I go for my long holiday in November.

The other thing I realised was the need to cut down on computer use and to look at using Dragon voice recognition software more often to carry out tasks. This is quite ironic as I have been doing a fair bit of work with a number of charites etc to do with Cardbox a database facility, in fact for one of them I have now been appointed as Database manager, not quite sure yet what this involves. For some reason the effect of using the tablet does not seem at present to have as much effect on hand and arm, so doing this on it.

Therefore only today I  have Sean  from Sue Jensens company to do some training with the Dragon, coming to help go through better ways of carrying out tasks on the computer. I have only just realised, that the position that I sit in when watching tv and the angle is making my back and posture worse, so I have now ordered a bracket for the wall to raise it to a more sensible height, I wonder why they make these stands so low when as I have now found the middle of the screen should be at the same height as my eyes when sitting, no wonder my posture was worse, there is nothing with the tv to warn of this. More generally when out I am trying to improve my posture,  but after a lifetime of it being so poor its hard to change and sit properly.

My latest trip to London for the wildlife photographer of the year award exhibition 21 March 2014

My latest trip to London for the wildlife photographer of the year award exhibition 21 March 2014

I joined our U3A photography group, a little while ago, we have visited a number of venues, but this one to London seemed particularly interesting, given the fact that I’m going on Safari in the next few months, so I was hoping that this would give me inspiration as well as be a pleasant trip out in good company. The first thing I realised was I would not be ale to achieve a full day with such an early start, so common sense made me realise that I should that I should travel down the day before and then meet up with the others.

Because I have done this trip before it was going to be easy to book the train tickets and hotels, while the train tickets were not a problem other than the fact that I adopted for E tickets and had problems printing them out, but that was quickly solved, trying to find a hotel in a suitable location, at a reasonable price was a much bigger task, but eventually I booked one with travel Lodge, which was not too far away.

I did as I had done previously and went on Facebook to where a group of friends I have in London post I mentioned my trip, for most of them, unfortunately they were unavailable on the day that I was free, which was a shame booked, I was would find other things to do, fortunately close to the date a man called Dave volunteered to meet up and show me round and Maggie, who was been brilliant in the past, at showing myself and others the sights of London, said she would also meet up, but suggested the Tower of London experience as a good place to spend a couple of hours, I had had confirmation from my U3A friends that we would be meeting on the Saturday lunchtime going for a meal and then to the exhibition, so all was arranged.

On the day there were no problems on the train, I met with Dave at Euston, we decided because I only had a backpack not to go to the hotel first but instead to travel to the tower bridge, it’s funny how the brain does not work sometimes properly, the bus we were getting on was what I believe is called the Route Master, a real old boss, complete the conductor that you boarded at the back, it wended its way through the streets of London but then seem to get stuck when we looked out of the window realise we were close to the tower, so you might as well get off, it was only then I realised the bus was something to take a photo of because there are so few of them now, unfortunately, by the time I had got my camera out it had sped off into the distance, never to be seen again.

We walked over to Tower Bridge bought our tickets and spent a couple of pleasurable hours looking at the various exhibits and taking photos, it was interesting to listen to Dave about his various trips and career and life, I had sent a text to Maggie to confirm where we were so we met at about 5 PM, just as it was starting to get dark, which gave me the opportunity to take a series of photos of the tower, Tower Bridge, the Shard and various other places illuminated at night. We then went from meal, which was quite pleasant but in the short time we were there, it quickly filled up and Maggie explained this was typical of London, I felt it was time now to book into the hotel, the other two decided they would travel with me, part of the way which was very kind of them, I could not believe the length of the queues for a ticket on the underground, but once bought there were no problems and Maggie parted with us. I think at Victoria, I really do appreciate the effort she goes to to make these trips so memorable. Dave offered to see me all the way to the hotel, so we continued to Euston and then walked to the hotel, luckily he was able to use his phone and Google maps to find it for us, once booked in I parted with Dave and said I would be in touch when I got back home, but thanked him for his time and effort and kindness.

Went to my room it was a very basic compared to some I had been in, but there again, given its location, not too expensive, luckily it had a bath so I could have a good soak and a drink of tea before resting and watching TV before going to sleep. The hotel did say on its website that there was some traffic noise, even without my hearing aids with the window closed, it was still intrusive, but initially I slept quite well,despite the strange bed that seemed to rock, but woke in the early hours, so found it difficult to get back to sleep again. Eventually did. I got up about eight get washed and dressed, then went looking for somewhere for breakfast, those of you know me will not be surprised that I ended up at McDonald’s. I then went back to the room to sort my things out, then travelled back to Euston to meet up with my U3A friends. We could not believe the queue to get down to the underground and how many people wanted a ticket, including me. Eventually, this was sorted, luckily one of us knew where we were going, so off we went. It was decided we would have a meal first which was very pleasant and again those that know me will understand when I say how pleased I was to find carrot cake was on the menu, I think if I remember correctly it was a Lebanese restaurant.

We then joined a great big long queue to get into the museum, eventually we were inside, again , lots and lots of people and lots and lots of noise, we first went to a talk by a young man who, when he was 14 had been the young wild life photographer of the year, for one so young. He was exceptionally talented and knowledgeable about his subject. We then went to look at the photo exhibition, I had never realised how dedicated some people are to their photography, the time and effort some spent looking for that elusive photo was truly incredible, having said that some of the people lived in areas of the world where it was more conducive to the photos that they took than others. After this we parted with one member who was going on elsewhere, we had a short walk round a small part of museum before it was time to go back to Euston for our train.

We had a drink and cookie there then it was time for the train, we chatted on the train so the time passed quickly, when we got back to Manchester. We got the Metro to Piccadilly gardens and just by good luck the Fountains were working, and displaying in a range of colours which were quite spectacular, so we took a few minutes to get photos before going for the other tram, at Bury. I had just missed my bus so got the taxi, then the task of unpacking doing washing and catching up with those usual day-to-day tasks. It was all a very enjoyable trip in good company, I think I would like to go back to London again maybe spend more time looking at the buildings at night time, but we will have to see.

A Totally New Adventure A Safari At Last 23 March 2014

I promised I would write a blog about the plans I had for a Safari to Africa, so here goes. I had been talking for years about a trip to go on Safari, whilst at Disney, I did go on their imitation Safari, it did have Lions, elephants, giraffes and all sorts of other animals and even had imitation poachers firing guns, but the animals seemed totally disinterested, so I thought the other thing to do is the real thing.

I started to look at holidays and the first problem was to do with medication and travel insurance because of my health issues, in particular, malaria and and malarial medication and its effects on me, the other problem was I was still being investigated for various health issues so was unable to go at that particular time. Last year, I looked again, but unfortunately needed an operation and then something else came up which would have prevented me from travelling that sort of distance, so again the trip was cancelled.

At long last, my health seems to be not too bad at present, I feel my back with the help of painkillers if needed will cope with the holiday so all I had to do them was book it. Not quite so easy as I thought it would be, it seems most people, book their holiday a year or two in advance for this sort of thing, so with only a few options with Saga who given my age and health seem to be the safest option as travel agent, as I was travelling on my own. I contacted them and discovered they had the sort of holiday, I wanted this year. In June, it would be in South Africa for nine nights (two nights flying there and back) so effectively only seven nights, this wasn’t a problem as I felt I would not be able to do a Safari every day and could rest in between.Also I decided to upgrade for the very long flight as it is 10 hours, so now in Economy Plus, bigger better seats,

I also wanted to visit Cape Town on the advice of my physio, so I mentioned this when making the booking as it seemed an exciting add-on to the holiday. The company was able to accommodate me, but the cost for three nights would have come to £1000, I did explore through the website, The Man in Seat 61 travelling from Johannesburg to Cape Town by train which would have been a 24-hour journey, but what a fantastic experience to see, unfortunately the dates did not fit in with the holiday, so in the end I decided to discard the Cape Town element maybe to look at that another year if I have enough money.

The holiday will be in the month of July, originally was going to be June, but it appears they did not have enough people, then came the next shock in the letter confirming the holiday, when it explained this is this areas winter period, so don’t forget to bring winter woollies, but also not to bring bright, white, or black clothes, so that was my wardrobe of outdoor gear totally unsuitable, but never mind. It was an excuse to buy some more clothes, while mentioning about buying it has also been a good excuse to buy a new very clever camcorder for the trip. (Still trying to work out how to use it, it’s me not it) I have made an appointment to see the nurse at the GP surgery about any inoculations etc, so I will be ready for the trip.

Well that’s a taster of the planning, I’ve paid my deposit just need to pay the balance, and wait for July to arrive, well actually, maybe not. I am sure there are other things I’m going to have to deal with between now and then to do with the holiday so will keep you up-to-date over the coming months, as usual I hope you enjoyed the read.

Latest News And Ramblings Of My Life 23 March 2014

Firstly I must apologize to people about the delay in posting on here, its just that life seems to of been so busy the last couple of months as, some of the things I hoped to do this year seem to be getting closer to happening after all sorts of setbacks, more details in other blogs, plus other new doors seem to be opening in other ways, so off we go hope you enjoy the Blog.

Those that know me will have heard me many times talking about this Safari. I am one day going to do in Africa. Well after lots of thought. It looks like it might finally be happening, hopefully in July of this year, it will be to South Africa for nine days, what I intend doing is writing a blog about the ups and downs of planning the trip, but then to tell the story as I get nearer and then ultimately let you know how I go on with the trip.

The other thing I have been trying to sort out since my son’s 40th birthday was to finally get round to indulging his wish to go to the Grand Canyon, this will fit in with my interest in visiting Las Vegas, well it looks like this is finally going to happen this year, but is now become a much more interesting and exciting trip than originally planned, guess what I’m going to write a blog about it. How this seems to have taken over my life at present despite the fact the actual holiday is not until much later in the year and has become a sort of round the world trip, so more information to follow.

At the start of the year my life seemed to be going along a fairly even keel with not too much to challenge me, but a plan to make more of my life and to find interesting new challenges. Well, that seems to of happened, now the problem is how to fit everything in, given the restrictions on my health.

Last year, I was introduced to Mindfulness, some of it I feel I have taken on board and have done things to change what and how I do things. Sadly, I find it difficult to stick to the exercises which I am sure would help me even more, unfortunately I have always struggled with sticking to exercise regimes, maybe partly to do with the ME that I have and poor short-term memory.

I also joined the local U3A and now attend regular meetings, as well as joining the photography group and found this is opened all sorts of new and exciting experiences for me, the latest being a trip to London this weekend which was to visit the world wildlife photographer of the year show at the Natural History Museum, but more of that in you’ve guessed it, another blog to follow soon. The group was looking to creating a database of members, by coincidence I was aware of a product that would suit their needs, so became involved in creating this with another of the members, who was now taken it to something much more sophisticated and complex, which seems to be serving the committees needs. About a week ago I got a phone call asking did I want to be the new database manager, well-being, the shy, retiring person I am, I immediately agreed, fame at last, and only after asked the details of what I would need to do. It also seems that I need to join the committee so that I can have access to the members details, so reluctantly have done this. Speaking to the chairman the other week, he was delighted that I had joined the committee, which gave my ego a marvellous boost, err uum, no, it was so there was another male on the committee, as well as himself so we will have to see.

It looks like it’s going to be the year of committees for me, as I am now on our local ME support group also, mainly because they were struggling, good or bad I don’t have a role with them other than to add useful suggestions, attend meetings and other odd tasks. No, wait a minute, I am doing a similar exercise for them for their members database as well as creating a resource database for them. This will help people to find out what resources are out there and how to access them within our ME group. I’ve also joined the Facebook group for our ME group, which has a mixture of very serious and fun discussion on a day-to-day basis. I forgot to say I have a new friend on Facebook, much brighter than me by the name of Filbert Bear, I feel very privileged that he has befriended me has been giving me such helpful advice on a whole range of subjects.

From the Facebook section for the ME group, I have come across a couple of really excellent blogs, one is by a person call Smallfry182, I really enjoy the blogs that she writes, she seems to have a natural talent, although I am not sure that she would believe that, she tells of the ups and downs in her life, she seems to have the ability to write about her life as it is, with the ups and downs, but with a sense of irony and humour that makes it an enjoyable read. If my writing, has made it interesting for you, then below is the link to her blog, I am sure if you are into blogs and learning about people and their lives. This will be a good read.
http://smallfry182.wordpress.com/author/smallfry182/


Well I will leave this for now, because I have to do a blog about this weekend’s trip and then over the next few days, maybe finally start working on a blog about the Safari in July and my other trip towards the end of the year, as usual I hope you have enjoyed the read.

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.