Going from being able to do most things in life or to at least being able to have a go, to then being able to do virtually nothing a lot of the time, I think would make most people depressed. I was told "pull yourself together" that many times by people, family and friends, but I just couldn't. I couldn't cope with how much my life had changed and how much more it was going to change. I know I got quite difficult to live with, one minute I was angry the next I would be crying.I remember one time we all went to Focus in Newtown to look at paint and wallpaper, well within five minutes I had turned around and had us all marching back out, and was shouting"there's nothing I like in their" the kids just looked at me as though oh Mum's having one of her funny turns again and Bob just looked at me and then drove us home.I can laugh about that incident now, and yes it and others just like it are brought up in conversation many times. I was so angry at the world, angry at everything and even myself for getting this stupid illness.
I went on forabout two years feeling like this and probably driving my family mad.I was 31years old had 4 young children, I didn't want Bob or anyone to have to lift me on and off the loo,or to wash me and dress and undress me. I didn't want to spend most of my time in bed and being in constant pain in all my muscles and joints, I didn't want any of it.I Wanted my old life back, doing stuff with Bob and the kids,like walking up the mountains (well some are big hills), going ice skating, horse riding, just things that we used to do and the ordinary things like being able to stay awake, having a baking day with the kids,being a mum to them. We couldn't plan anything for weekends or school holidays because we would have to wait and see how I was. Sometimes I would see the look come on their faces when they were told "we'll wait and see how mum is", they resented it as much as me, but I always felt I was spoiling their fun, so a lot of the time I would stay at home while they went out. Those times were horrible I would just lie in bed and cry and get angry at myself again, but I always tried to make sure I was okay by the time they came back and be full of questions so they could tell me about their day.
I knew then that this feeling was getting the better of me and for my own sake as well as the rest of the family I decided to go to our local GP and be honest and tell him how I really wasn't coping in accepting this illness.
I don't think he was shocked, it was quite a long consultation, so I don't think I was too popular with his other patients lol. He referred me to a CPN which is a community psychiatric nurse.
Wednesday, 31 August 2011
Monday, 29 August 2011
A Diagnosis
We moved to Cemmaes. A friend of a friend had a small house to rent, it was a shell of a house,Bob had been going their for about a fortnight getting it ready for us to move in.
It was the opposite to what we had been in and no garden. We also put our names down on the council list. But it was in a nice village, with a shop, a pub and a post office and the village had quite a few other children in it so our kids were really happy.
I was given a wheelchair, I think I stared at it for a month and kicked and hissed at it when I passed it. I had to accept it before I could use it, and that took some doing, yes logically I knew it was better for me and the family for me to use the wheechair, especially if we were going on a family day out to a theme park or shopping for the day, but i hated the idea of it, many times we would attempt to have a day out and because i was so stubborn I wouldn't go in the chair, we would end up coming home because i couldn't walk. I think I probably spoiled many days out because of not wanting to go in the chair. In the end I had no choice, it was chair or I couldn't go out.
Being in a wheelchair is because your legs don't work properly, not your brain! The amount of times Bob was asked" how is she doing" when I was sat in in front of them, I can't remember!
I was still going to my GP complaining of this and that,I was given anti-depressants, i kept telling the doctors I wasn't depressed, I just wanted to know what the bloody hell was wrong with me. I think they dreaded me going into see them. One of them retired and a locum GP, Dr Cambell was their when i next visited. He seemed quite interested in what was wrong, didn't think I was mad or that i was making it all up. He took some blood for even more tests. After a couple of weeks I got a phone call from the surgery to go for my blood results.
My results showed Epstein Barr Virus, this meant nothing to me at the time, but I was happier that something had showed up. I was then put on a waiting list to see a Proffeser Lewis.
After a long wait an appointment came, it was 1994 in Bronglais Hospital in Aberystwyth, we saw a Proffeser Lewis, a lovely man. He had lots of papers in front of him, he asked me loads of questions he examined my arms, legs, he seemed to understand what I was telling him, after about an hour he informed me that I had 19 of the 21 symptoms he had listed for MYALGIC ENCEPHALOMYELITIS otherwise known as M.E.
It was the opposite to what we had been in and no garden. We also put our names down on the council list. But it was in a nice village, with a shop, a pub and a post office and the village had quite a few other children in it so our kids were really happy.
I was given a wheelchair, I think I stared at it for a month and kicked and hissed at it when I passed it. I had to accept it before I could use it, and that took some doing, yes logically I knew it was better for me and the family for me to use the wheechair, especially if we were going on a family day out to a theme park or shopping for the day, but i hated the idea of it, many times we would attempt to have a day out and because i was so stubborn I wouldn't go in the chair, we would end up coming home because i couldn't walk. I think I probably spoiled many days out because of not wanting to go in the chair. In the end I had no choice, it was chair or I couldn't go out.
Being in a wheelchair is because your legs don't work properly, not your brain! The amount of times Bob was asked" how is she doing" when I was sat in in front of them, I can't remember!
I was still going to my GP complaining of this and that,I was given anti-depressants, i kept telling the doctors I wasn't depressed, I just wanted to know what the bloody hell was wrong with me. I think they dreaded me going into see them. One of them retired and a locum GP, Dr Cambell was their when i next visited. He seemed quite interested in what was wrong, didn't think I was mad or that i was making it all up. He took some blood for even more tests. After a couple of weeks I got a phone call from the surgery to go for my blood results.
My results showed Epstein Barr Virus, this meant nothing to me at the time, but I was happier that something had showed up. I was then put on a waiting list to see a Proffeser Lewis.
After a long wait an appointment came, it was 1994 in Bronglais Hospital in Aberystwyth, we saw a Proffeser Lewis, a lovely man. He had lots of papers in front of him, he asked me loads of questions he examined my arms, legs, he seemed to understand what I was telling him, after about an hour he informed me that I had 19 of the 21 symptoms he had listed for MYALGIC ENCEPHALOMYELITIS otherwise known as M.E.
Months of Hell
I had no energy to do anything for myself, not even to sit up in bed or have much of a conversation, I would forget what I wanted to say or the words would come out wrong, back to front even. I think everyone including me thought I had gone mad! When my brain allowed me too, I did think "what the hell is wrong with me" I did worry that I had got MS. My mother had had MS and I knew by what it had done to her that it wasn't very nice! I had blood tests after blood test a specialist from Aberystwyth hospital actually came to the house and examined me, stuck pins in my legs, actually drew blood and then gave Bob some tablets to give me.
I can't remember what they were, but they made me worse, my tongue felt too big for my mouth and I could hardly talk. After about a month Bob took me to hospital and a nurse who was in charge stated that I had been over prescribed and I had to come off these tablets, but slowly.Bob must have been totally worn out, the car body shop was busy, 4 young children to look after and then their was me I couldn't do much for myself at all.I felt completely helpless, I couldn't do anything to help. He was getting up in the night to spray cars and do other jobs. He was basically trying to do everything around the house,run a business, look after the children and me too.
I don't really remember much of this time, its almost like a blur or a void in time.
Eventually I picked up a bit and could get up out of bed and slowly potter about as I call it.
People would ask me what "whats wrong" or they would ask Bob, but we had no answers. Jonathan came home from school one day very upset, other kids had seen the blackness under my eyes and they had shouted to him that "his dad hits his mum" . My eyes had changed so much that it did look like I had 2 black eyes, yet with all the sleeping that I was doing my eyes should have looked the opposite.
The children were too young to understand that I was ill, and that we didn't know what was making me ill or why.
Bob had run the business for 2 years but he couldn't carry on looking after me and the children and run a business. He decided to close the business and we would have to go on welfare benefits. So of course we also had to move house because the house came with the car body shop. The landlord was great he didn't rush us out, he just felt sorry us because the business was doing so well.
I felt awful for Bob, that was his dream down the drain, he didn't moan, he didn't complain, he just carried on looking after me and the children. I think that was one of the worst times of my life and I have always to this day felt guilty about it.
A little bit about me.
I have 4 grown up children, Katie, Richard, Jonathan and Bobby and 2 grandchildren Matthew and Anne-marie and another due in March 2012. I was a fit and healthy young woman. I remember walking Katie and Richard to school, I think it was about September 1991, and feeling exhausted when I got back and the muscles in my legs hurt. I had had a cold so just put it down to getting over that really. But it didn't go away, somedays I could hardly make it up the hill, then other days it wouldn't be so bad.
We had the chance to move to Wales, Bob could set up his own car body shop and we had been told we would get better treatment for Bobby who has Cerebal Palsy. We came over to Wales to have a look around, saw the house, which was huge, and the car body shop next too the house, the school the children would go too. It was all lovely, it's a Welsh school so the kids would learn Welsh. Life in Birmingham hadn't been too good for us, Bob had been made redundant and hadn't had any luck in finding another job and now the clinic where we had taken Bobby too every day had told us their was nothing more they could do, they had taught him how to get up and walk and that was it. So we thought a new begining would be good for us all.
So we moved 9th November 1991, to Talerddig in Mid Wales.
We all loved it, the house we rented was huge, 2 staircases, 4 bedrooms and a huge attic and a lovely garden with a stream and close to the railway. The train drivers got used to the kids running the length of the garden chasing the trains, they hooted their horns and the kids waved even some of the passengers waved back!.
The car body shop was going great, the kids learning Welsh, getting used to cooking on a solid fuel aga, when I first saw it i just looked at it and thought " what the hell do I do with that".
But something was wrong with me.
Everything hurt, my arms my legs, my joints I couldn't even think straight, had no energy. One day while hanging the washing out I collapsed in the garden. Bob was in the body shop, can't remeber how long I was lying their, eventually he came out and saw me and managed to get me in the house.
That was the begining of 6 months of hell.
We had the chance to move to Wales, Bob could set up his own car body shop and we had been told we would get better treatment for Bobby who has Cerebal Palsy. We came over to Wales to have a look around, saw the house, which was huge, and the car body shop next too the house, the school the children would go too. It was all lovely, it's a Welsh school so the kids would learn Welsh. Life in Birmingham hadn't been too good for us, Bob had been made redundant and hadn't had any luck in finding another job and now the clinic where we had taken Bobby too every day had told us their was nothing more they could do, they had taught him how to get up and walk and that was it. So we thought a new begining would be good for us all.
So we moved 9th November 1991, to Talerddig in Mid Wales.
We all loved it, the house we rented was huge, 2 staircases, 4 bedrooms and a huge attic and a lovely garden with a stream and close to the railway. The train drivers got used to the kids running the length of the garden chasing the trains, they hooted their horns and the kids waved even some of the passengers waved back!.
The car body shop was going great, the kids learning Welsh, getting used to cooking on a solid fuel aga, when I first saw it i just looked at it and thought " what the hell do I do with that".
But something was wrong with me.
Everything hurt, my arms my legs, my joints I couldn't even think straight, had no energy. One day while hanging the washing out I collapsed in the garden. Bob was in the body shop, can't remeber how long I was lying their, eventually he came out and saw me and managed to get me in the house.
That was the begining of 6 months of hell.
Me. starting a Blog
I decided today to start a blog, haven't really got a clue how to do it , think I will need some help!
Brain fog is a big thing for me to cope with along with all the other symptoms I have. My blog is about me, me as a person and M.E as an illness. I hope you will enjoy reading and maybe you will have a better understanding of this awfull illness.
Brain fog is a big thing for me to cope with along with all the other symptoms I have. My blog is about me, me as a person and M.E as an illness. I hope you will enjoy reading and maybe you will have a better understanding of this awfull illness.
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