Getting up to date with M.E.

A friend of mine had started volunteering at the Bro Ddyfi Advice Centre in Machynlleth and had been asking me for weeks to have a go at training to be an adviser.I had met one of the volunteers Celia previously, she had come out to visit me at home when my application for Disability Living Allowance had been refused and she went to a tribunal with me and won it. I was worried about the "Brain fog". Brain fog just happens, I forget what I'm saying, find it difficult to concentrate for any length of time, I have to concentrate so hard sometimes just to have an everyday conversation, my words can come out back to front, how on earth was I going to study to become and advisor? I talked it over with Melanie my CPN, she was all for it, she new day time TV was not for me. So I went along and met everyone, had my interview, I explained as much as I could about this illness and they signed me up!

The training took me about a year, it was hard slog to get through all the topics, and the "brain fog" was and still is a problem but I loved it.It gave me confidence, I felt good about me, which I hadn't done in a long time,I was making new friends, I was using my brain, I was meeting people and learning new skills, the help and support I got from the rest of the staff was brilliant,  also I think I was easier for the rest of the family to live with because I was happier in my self.

I had been depressed, and it did affect us as a family, I think Bob and the kids must have been living on tender hooks at times, wondering how I was going to be physically or what frame of mind I was in, it can't have been easy for them to cope.

Bob and I were very lucky, someone close to us had bought us a cruise on the river Nile in Egypt. Bob had been fascinated by Egypt for years and it was a dream come true for the both of us to go their. The photo is of me in Egypt I was 34 and had been diagnosed for 3 years. The heat really helped me, my joints and muscles were less pain full.Sailing down the nile from Luxor to Aswan was wonderful, people still bathed in the river, washed clothes, it was just like the pictures from a children's bible story. Also this was the first time since Bob and I had been together that we were on our own.

 This is our one holiday that we all went on... Turkey. We had a great time. Bob taught himself to swim because he got fed up of just sitting on the side watching us all have fun in the pool. Bobby had a thing for waistcoats, he did build up quite a collection. katie and Richard got badly sun burned. Can't remember why Katie is glaring and looking so fed up. We found a lovely restaurant called 15 Brothers and Jonathan always had the same meal, spicy chicken!. Most of that holiday I was in my wheelchair it was a time that my legs just didn't want to work!

 The kids thought they were millionaires, because of the exchange rate and the Turkish currency at the time, when they changed their money to Turkish Lire, they did have millions.









We all used to love coarse fishing and it was something i could still have a go at, even in my wheelchair, we used to go to a place on the outskirts of Shrewsbury called "Spring lea". We would go for long weekends and in the school holidays we would go once maybe twice. We couldn't really plan ahead, we had to do things when I was well enough or Bob and the kids would go out. Jonathan with one of his fish that he caught .

Katie, Richard and Jonathan joined the local army cadets. They enjoyed this as they would go  away on camps etc and Richard when he left school at 16, in  September 2001 he joined the army. He didn't really like school, he always wanted to be a Soldier and he still is.He has a daughter, Anne-marie. Katie went to college in Newtown to study Health & Social Care and eventually went to live with her boyfriend and later married him and she had a Son, our Grandson, Matthew.

This is our granddaughter Anne-marie, with our dog Storm.
She is a female version of her Dad! I am looking forward to when she is a teenager, I hope its payback time lol.

Matthew our Grandson on the beach at Manobier in South wales. Katie and Matthew moved to South wales after Katie's marriage ended. She is a nursing auxiliary in Carmathen Hospital, she loves her job, loves being a mum and she comes to visit and we visit her and Matthew comes to visit in the school holidays.





Jonathan also went to newtown college, he is a carbon copy of Bob! He studied car mechanics and passed his exams and is now a Mechanic and a MOT Tester. Bobby also went to Newtown College and he is now a chef, he works all over the UK.
                                                                                                                                                                                         

 

 One of my favourite photo's, Bob and the boys, the boys all wearing their "uniforms of work"

The kids had grown up living with M.E.. they have never really talked about it much, they just seem to accept it. Bob did all the things I should have done and he was good at it too, our house was always clean and tidy, the kids did their rooms, but mainly Bob did every thing. 

When I was well enough we had  baking days or the kids would help me if I was cooking or we would make loads of little cakes and add food colouring to the sponge mix and icing, we did end up with some weird looking cakes, but it was fun, sometimes the food colouring would also become hair dye! It would end up everywhere.

 I resented being ill, I should have been doing the things a mum does for her kids, going on bike rides, having fun with them. Most of the time I was too tired. I would talk to them about their problems, share their laughs, give them a telling off when they needed it  but I do wish I could have done more.

Bob was great, I couldn't of wished for a better carer, he never moaned, most nights he would have to get up  at least once to help me to the loo or wash me and strip the bed because I would be dripping with sweat and when Bobby was younger he would have to get up to him because he had leg cramps, so between me and Bobby Bob didn't have much sleep a lot of the time.

Eventually it was just me and Bob and the dog Storm, it felt strange, a quiet house, our house had never been quiet, but now it was, I was still working, I had been on courses and trained as a Debt advisor and I had been taken on as a paid worker, working 16 hours a week.

I was quite excited about me and Bob being on our own, as we had never been just me and Bob, sometimes when I came home from work he would lie with me while I fell asleep, then usually I would wake about 3 hours later and he had cooked our evening meal

Photo is of me and Bob when we went on holiday to Cyprus.


I always thought me and Bob would be together forever, never in a million years did I think we would split up. But we did.
Since April 18th 2011 I have lived on my own in Machynlleth.