ME and Cath in Corfu October2010

Me and Cath had talked about going on holiday the previous year, but that's as far as it got, talk!
Cath hadn't been on holiday abroad before, had no idea where she wanted to go, all she did know was that she wanted sun.
I had wanted to go to a Greek Island but had never been, so I decided to look at Corfu, from what I could tell from brochures and the Internet I thought it looked lovely and also the flight time wasn't that bad for a first time flyer.
I received an email from travel zoo, their top 20 deals, had a look and their was a bargain for the beginning of October, Corfu, a little village called Rhoda for a week in a 5* hotel all inclusive including flights £440. So I just booked it. It was about a month away!
I was so excited I couldn't wait to see her reaction, that I had actually booked it and that we were definitely going on holiday!
Cath was as excited as me, I think we may have drove our friends at work mad because that's all we talked about.
The day came for us to go to Manchester airport. Cath drove to my house in Cemmaes and then Bob was taking us to the airport in our car.
About an hour into the journey the car just stopped, Bob fiddled with it and got it going again, then it stopped again. It was pouring with rain and this time Bob couldn't start the car. We had set out with plenty of time to get to the airport, but now time was getting on. A landrover with a middle aged man driving it pulled over to see if he  could help us. Bob explained that the car had just stopped and that he was taking me and Cath to Manchester airport. The man offered to take us, but first he would go and get his car. Well this frightened me and Cath, a man that we didn't know, well our imaginations ran riot, we frightened ourselves almost to death! I asked Bob to please try and fiddle with the car to get it going as I really didn't want to travel with someone I didn't know and neither did Cath. Luck was on our side and the car started and Bob drove quite quickly before the man came back! Luck was with until we reached the Wrexham bypass, then the car stopped, this time it didn't start, so Cath phoned a friend who gave us the number for a local taxi. Bob had also phoned a friend to come and pick him up. So off me and Cath went. I was beginning to think we wouldn't make it in time, but the driver drove quite quick and got us to the airport.
After checking in we headed to the bar and had a couple of drinks before our flight. Cath thought she might be nervous, but she wasn't, we had a good flight, then had an hour coach ride. 
Just as we set off on the coach journey, Jon texted me, " Sarah said yes mum". Jon had driven down to Cardiff to see Sarah at Uni and once he got near her flat, had Robbie Williams singing Angels blaring out of his car, rang her door bell, as she opened the door, he was on bended knee and proposed her with an engagement ring. I didn't care about the cost, I rang him, he sounded really happy and emotional. He had asked me previously what should he say to Alex (Sarah's Dad) when he asks for permission to ask Sarah to marry him. So we had had our chat and he had been to see Alex and I had been waiting for his text .

We got to the Hotel and it looked lovely, we were well impressed then we were taken to our room. As we entered our room we saw a huge bed and cath said " is now a good time to tell you I'm bi-sexual" well we laughed and laughed, it was late so we had a drink un packed and then went to bed and we both realised we snored!

The view from the balcony at breakfast. The food was lovely, so much choice. The drinks were nice too. One time we decided to have a cocktail, it was after lunch, probably about 2pm. After the cocktail, we both had to go to bed to sleep it off, can't remember what was in it but it was very powerful. I rang Katie one evening and she asked me what we had been drinking,well we had noticed lots of people drinking a drink called Sambuka. So we had been having a few of these, as well as our archers and lemonade, so when Katie asked I told her and she thought we had been drinking shots, no I said, they give it in half pint glasses and we really like it! We never got drunk nor did we have hangovers!

Cath sat outside our room after a day on the beach and in the sea, oh yes, we had had a few archers and lemonades too. The sea was lovely and clear and quite warm. Their was an aerobics class everyday in the sea, but we never felt the urge to join in, we just watched! Their was a lovely beach walk to the village of Rhoda, we walked in to the village a few days and had a mooch round the shops and had a drink in a few of the bars. We found the people very friendly. The scenery was beautiful.

 Cath even got a tan, on the first day on the beach, I put my oil on take my top off and its not long before I'm getting browner. Cath has quite pale skin so I thought I would encourage her tan by putting some oil on her. Don't think I should have done it because half an hour later she was burnt! "Sorry Cath".

It was so nice to be warm and relaxed, we just did what we wanted at our own pace, which was slow! but we had a great time.

 We went on a trip up the highest mountain in Corfu, it was high, me and Cath were in the front of a jeep with the guide, it was quite scary in places, but the views at the top were lovely. At the top is a church. On the way back we stopped at a local taverna for food and watched the sunset.

 One of the afternoons we went to Corfu town which was lovely, their is like a modern part and an old part and a huge harbour. We saw quite a few cruise ships and their is also a castle.

 Cath with the Castle in the background. Their are lots of cobbled streets and a huge market. We had a good time looking at the stalls and sampling the local food.

 

 Me and Cath in the sea at Sidari. We got on a local bus and went to Sidari, wasn't too far away from Rhoda, they have beautiful cliffs and rocks, again we sampled the local food and had a couple more archers and lemonades.

We had a wonderful holiday, but decided a week wasn't long enough! Next time its two weeks at least!

My Weekend 23-25 September 2011

Woke on Friday morning and my body  had gone so stiff I wondered if i had taken a short course in death. I don't seem to move a lot when I'm asleep, I wake virtually in the same position that I was in when I fell asleep.  It took a while to actually get out of bed, I was in a great deal of pain. The first thing I did was to take pills, put kettle on and have a cigarette. I have often thought about smoking cannabis, I'm told that it may help with the pain, so far I haven't, but I may in the future.
I tried to do some stretching but it was too painful, I did manage to roll my shoulders a couple of times but that was about all.

I got to work just before 9.00am and went over to Michelle, my foot lady, to re-arrange this weeks appointment and have a cuppa and a chat.
Brenda and Cath wondered where I was when they arrived at work, because I'm always in the office before anyone else, the chat with Michelle had gone on longer than expected, and just as I got into our office my mobile was ringing. My friends are great, if I'm not where I should be at a certain time they ring to check I'm okay. I think the falling down stairs and the fact that I'm living on my own now has made me and others realise how vulnerable I am.
The Advice Centre was very busy and I had lots too do, so by the time we closed I was ready to go back to bed.I was asleep by 3.15pm
I woke about 6.00pm feeling really shaky, almost zombefied after a drink I felt able to heat some soup. I rang Katie as I hadn't had a chat with her for a week or so. I was back in bed by 8.00pm, I had weird dreams and woke in a panic about 2.00am, I really needed a shower, but I haven't got one so a wash was the best I could do. I managed to calm myself down after 3 cups of tea and 3 cigarette's. The dreams are awful, they are so vivid  when I wake from them my body and brain feel like the dreams have been real.
I went back to bed about 4.00am then woke at 10.30am and I felt able to get up! Most Saturdays I don't see until at least mid afternoon. I even went for a walk round town had a mooch in a couple of the shops. I treated myself to a couple of chocolate bars and went back to the flat. My thoughts were at Spring Lea, where we all used to go fishing, Bob, a couple of his brothers and their wives and also Jonathan were their for the weekend. I have some great memories and part of me wished I was their with them. My brain was so bloody active that I didn't sleep at all Saturday night, I played some scrabble and then watched the rugby, Samoa against Figi was great, before the kick off they did their war dance thing, was brilliant, I put a load of washing in the machine and went to bed about 9.30am Sunday morning. 
The next thing i knew was the door bell ringing and mobile ringing both together, believe me that's hard to cope with when you wake up like I do.
Jonathan decided to pop in on his way home from fishing, for him too it had brought back memories. He'd had a good time, caught some carp, but gosh he did smell of fish and was filthy, don't think Sarah would of hugged him as soon as she saw him!

Bobby rang and texted he is on his way home as I type this, leaving Glasgow at 11.00pm on a bus, travelling all through the night and he get to Birmingham at 6.30am, then a train to Machynlleth. He is so excited, he read this blog yesterday and he read the part where I said that I needed sleep before and after I see him. He apologised to me for being so hyper, but he can't help it it's the way he is.
We are going to the Taj Mahal tomorrow, I have just realised that I should of booked it, but I have forgotten! Oh well, will try to remember in the morning.
The next part of my blog is going to be about mine and Cath's holiday last year, we went to Corfu for a week.


Take care everybody xxx.

Thursday, a day off with me.

Was a bad night last night, my arm hurt like hell, the muscles in my forearms were swollen and very painful. I know why, too much typing, wouldn't be too much for a "normal" person but it was for me! Also would my brain shut down.....no, so at 3.00am this morning I'm still awake and getting really angry with myself. One good thing though I didn't have to be up at 7.00am to go to work, a day off. Eventually I must have slept because the next thing I new I woke and it was 2.30pm!.I just lay their for about half an hour thinking about getting up out of bed. I was soaked again with sweat, I keep thinking that with all this sweating I do, I should be really thin! With the sweats comes the thirsts, I drink loads, no not all alcohol, coke, lemonade, loads of tea, I am never not thirsty, which seems a bit weird to me, but hey ho I just try to get on with it. I remember while I'm thinking about getting up about the treat I bought myself yesterday after the massage. Decleor cleanser, toner, moisturiser, oil and the night cream. So I had a go at pampering myself after I had washed. Must admit its very nice, my face feels lovely, must remember to do it tonight and put the night cream on.

Talk about remembering things, I knew I had to go out and pay my rent today. So I got ready to go out, weather was quite nice for a change, so I was looking forward to a walk and maybe a little mooch. Well mooch I did, chatted to one or two people in the street, picked up one or two things from the shop and got back to the flat. I need to have a rest so i just lay on the bed, then my mobile rang, it was my eldest son Richard, well I was a bit gobsmacked as he hadn't really bothered that much with me since I had left Bob. We had quite a good chat, then I lay down again.

Just as I lay down I remembered that I hadn't been to pay my rent, the one thing that I knew I had to do I had forgotten.

I get so frustrated with myself, my memory was so good, I used to remember phone numbers easily, yesterday I couldn't remember the name of the make of skin care that I had used.

My brain fog frightens me, to me its one of the worst symptoms.

 I have ordered myself a M.E. bracelet. On one of the M.E. facebook groups I belong too, a woman makes jewellery, we choose what colours we want and what charms etc, think they are lovely, will try and get a photo of them.

I just had some soup and bread and a packet of crisps today, haven't felt hungry at all. Bobby, my youngest son is coming on Monday, so I'm looking forward to that, think I will need sleep before and after seeing him! He is a bit of a whirlwind.

I am going to try and sleep now, as I have got work tomorrow.

Talk to you again soon, take care everyone xxx

Today 21st September

I didn't want to get out of bed this morning, I had a good sleep, slept through the night, but the same as most M.E. sufferers I needed more sleep. I just switched the alarm off and started dozing again. Then with a panic I remembered its Wednesday......WORK.... I usually get up at 7.00am when I'm working as it takes me 2 hours to get ready and feel ready. Anyway I got to work on time had a busy morning, talked and hopefully helped some lovely clients. After lunch the photocopier started playing up, its a brilliant machine, when it works properly. After me and another colleague had tried about 20 times to get it working I gave up and phoned for an engineer to come out. I felt like kicking the bloody thing as I needed to use it. 
Came home and thought I'll just have a nap.... well i was woken with door bell ringing and mobile phone going! Bob was taking me to Plas Talgarth for my massage that Jon and Sarah had bought me for Mother's day and I had slept longer than I had meant too.
If anyone gets the chance to have a Hot Stone massage, then go for it, it was wonderful. actually wonderful doesn't do it justice, its almost out off this world. Also treated myself to some Decleor face stuff too.
Bob and Jon are going fishing to Spring lea this weekend with a couple of Bob's brothers and their wives, its where we all used to go years ago. Memories, happy and funny ones. Hope they all have a good time.
Well its 10.10pm and now I'm going to have my dinner Beans on toast with cheese and Worcester sauce.
Take care everybody
XXX

Downs and ups of September!

Brenda and I had said we would go for lunch loads of times, well September 1st we did. We went to The Wynnstay in Machynlleth.  We had 3 courses, I purposely did this so as I wouldn't need anything in the evening, chatted, not about work! felt thoroughly stuffed afterwards, we had a lovely time.
The next day at work I wasn't good at all, brain fog played havoc with me, 13 of us were going out for lunch the following week, well I rang one place up and booked thinking it was the place we wanted to go to, then after a while something in my head wasn't quite sure what I had done, so I got both phone numbers of the places we had talked about go to and it turned out that I had cancelled where we wanted and booked where we didn't want to go! It took me about 30 mins then to do something that should have taken 5 mins. I got it right in the end. I got really upset, I had never been as bad as that with the brain fog.
On the Saturday I slept most of it, woke up at 5pm with the shakes and sweats and sore stiff muscles because I had slept so long. I was quite dehydrated too, so drank 2 cans of coke and had some toast and fruit was awake till about 8pm then slept till the Sunday.
Sunday was a good day woke at 10.00am did manage to iron a few of clothes from my mountain of un- ironed clothes that live on the spare bed!. Bob came over and we decided to to have dinner together which was nice.

I don't want you to think Bob didn't have a life when we were together, he did, he and a friend rented a wood and did Archery for quite a few years, he even won some competitions, made his own arrows and the feather things (sorry can't remember what they are called) he has two beautiful bows. The boys have had a go at it too, its the archery where archers aim for targets of animals that are placed in difficult places around the wood. Bob is very good at making difficult shots, he doesn't enjoy easy things he likes a challenge. Of course we all used to go fishing, Bob loves to night fish, he always looked after us in the day, sorted our tangles out, un hooked our fish if we couldn't do it, re set us up if we got broke, but night time was his time, sometimes I used to watch, sitting eating sweets till i got too cold.
Once he had taught himself to swim, that was it he wanted to learn how to scuba dive. So he did, he went on a course and passed. I secretly booked a holiday for us to Egypt and booked him up to do his advanced course in Sharm el sheik. He was so shocked, he had no idea. and ever since when we went on holiday it was to different places in Egypt or we went to Turkey to Olu Deniz with Hazel and Elwyn. Elwyn is Bobs diving buddy, me and Hazel would go out on the boats ( I hated walking the plank to get on and off, it was a nightmare) and snorkel above where they dived we had great fun. The warm water is wonderful to swim in and its so clear. Good times.  

Me at Giza with the Pyramids and Sphinx in the background 2008.

 Me in the sea in Turkey in 2009 we were out on a dive boat and I decided to get in and cool off. Was lovely.

Bob in his diving gear getting ready for a dive. Turkey 2009.











Monday 5th September about 10.00pm I went to check I had locked my front door. On the stairs I fell. I went down about 6 stairs, I wish I had had a couple of glasses of wine I might not have felt it as much. For a while I just lay their in shock, then I tried to get up and couldn't. In the end I managed to crawl back upstairs and get to my bed. My back was in total spasm but luckily I hadn't broken anything. I just lay in bed all night and the next day, I couldn't do anything else. I managed to get my mobile and make myself a drink the early hours of Wednesday morning and take tablets, tramadol were my best friends. I texted my boss at 7.30am to tell her I wouldn't be in work and texted Bob. No-one could get in because I hadn't given anyone a spare key, it was one of those things that I had meant to do but hadn't got round to do anything. I think Brenda would of broken the door down, but I told her that nobody could do anything to help i just had to wait for the spasm to ease. Friends texted me through out the day to make sure I was okay, Bob came round on the early evening and I managed to throw they key out of the window to him. He got me some food, think I needed it because of all the tramadol I had taken. I had a drink more tablets and went back to bed till 6.30pm the next day.
I was determined to go to the lunch on the Friday I had been looking forward to it. I managed to get washed and dressed, but need my stick for support, I was hurting very bad but I went, and I enjoyed it as I think everyone did.
Jon came round on the Saturday with Sarah, he had heard about my fall, but as I told him I didn't phone him because he couldn't have done anything.
Sunday I couldn't sleep at all, maybe I had slept too much previously. Monday 12th  I went to work, my back was getting a lot easier and on the evening I took Bob for an Indian meal, I think really only eat properly when I go out or if someone comes to visit, when I'm on my own I feel I can't be bothered most of the time.Tuesday, one of my days off was wasted I slept till 5.00pm, then I remembered I had to do the evening session at work with Cath.
Wednesday 14th I will remember for quite a while, I woke feeling quite good, this is a rare occasion, I went to work and I didn't need to go to bed in the afternoon. I cannot remember when this last happened.
A shock on the 15th, it was like my body was being punished for having a good day, I was in bed with sweats, shakes, sore muscles all day, during the night I developed a migraine. I don't have them often but when I do they are monsters of a migraine, again couldn't go to work, could even bear to hear noise, the sun shone through the curtains so I had the pillow shading my eyes, I felt sick, but wasn't. I just couldn't do anything. My bedding was soaking wet, I had moved over to the other side of the bed earlier, but now this was soaked too. I dread to think what I looked like, my hair was dripping with sweat, my whole body just dripped. I was like this till 4.00am, then the migraine cleared. I managed to strip my bed have a wash, well by then I was wide awake so I watched an episode of Casualty that I had recorded, then watched the rugby till 8.30am. Slept then till about 1.00pm and felt okay and just pottered about and slowly throughout the rest of the day remade my bed. Sunday and Monday were awful I didn't sleep for 48 hours, it was like my brain would not switch off! I felt so tired in my body but it was like my brain wasn't letting me rest or sleep. Tuesday night I thought I would have a glass of wine or two, so I did, guess what I slept, thank god.

Summer 2011 with M.E.

I love summer, love going to the beach, paddling, just sitting on the sea front with a bag of chips people watching.
It took till 2nd of June to get my Internet up and running, to me it seemed such a long time, their is only a few things on TV that I watch and a lot of the time I record things for when I am feeling better, I have difficulty concentrating for long periods of time, which can be really annoying especially if its a drama with a good plot.
Bob and I were okay, as long as I didn't bring up our relationship, we are quite civil, its like we are friends not husband and wife. 
Friends, Bob and the kids  pop in, they know just to ring the bell and walk in so  that I don't have to go all the way downstairs to let them in.
June 15th was our 16th Wedding Anniversary, as the day got closer the more I dreaded it. I thought about having the day off work, because I just didn't know if I would be capable of holding it together. I made an instant decision, I picked my phone up and rang Bob. Their was a place that had been " done up" and I had heard great reports about it and had wanted to go for ages. So I asked Bob if he wanted to go for a meal. I told him that I had been getting really stressed about the anniversary,but he was fine about it and he wanted to go for a meal.
We had been to the local Indian 2/3 times which had been okay, the food is always lovely.
I decided I would go to work and I was okay, a couple of my friends thought it weird that I was going out that night with Bob but they just hoped I would be okay because they all knew I wasn't sleeping and that I hadn't gone a day without crying, so I had lots of hugs as we all finished work.
I love hugs, even if my muscles all over my body are sore and aching I still try to give and enjoy receiving hugs. Bob and I have a niece, she is 39, I think, she is lovely, in a way a lot like me, blunt, likes a laugh, loves her family and will go through anything for her family, except a hug! She is not a huggy person at all, and sometimes when we would all be together, I could see her dreading if I gave her a hug lol.I respect some people are just not huggers, so if I have ever offended someone by giving them a hug I'm sorry.
I will try and explain how my muscles feel, they feel like they should be bruised black and blue all over, this is in my arms legs and my back and my backside. They feel very sore to the touch, solid and swollen, sometimes I can't bear to touch myself let alone anyone else touching them. Other times I feel that I want to like kneed them, like you would kneed dough when making bread, that's when I want a massage, I do feel some relief from that. Sometimes when I text after sending a few short messages to the kids of friends my thumb really hurts and the muscle in my forearm starts to swell, this happens if I'm typing with my 2 fingers on the computer too.
I try to stretch my muscles when I can cope with the pain that brings, I also try to swim as this helps, but I just feel so exhausted and my legs feel like lead weights when I get out of the pool.
A lot of the time stimulating my muscles cause spasms, and believe me muscles in spasm are very very painful. Sometimes when Bob and I were passionate it would end up with me in agony feeling like I was labour giving birth to a child. After spasms comes the soreness and aching, this can last for days on end and does drive me mad from the pain it causes. Its not a pain that I can always ignore, this is when Tramadol becomes my best friend!

Anyway Bob and I went for our meal, The place we went was The Riverside. It has been modernised and its beautiful. The food was lovely, I had tears in my eyes all the way their I was okay during the meal, we just talked about everyday stuff, and I had tears all the way back. nothing was said about it being our anniversary. Bob came in for coffee then went back home to Cemmaes.
On Saturday 18th I was in bed till 4.30pm, we had been busy at work and I was exhausted, I don't just mean tired I really do mean exhausted, I knew I had to get as much rest as I could on that day as on the Sunday I was going for a meal with Bob, Jon, Jon's girlfriends parent's Chris and Alex to celebrate Father's day. I had not expected to be invited but Bob and Jon wanted me to go. So I hardly got out of bed on the Saturday. On the Sunday morning I went for a gentle swim and I wanted to have a shower so I went to the leisure centre, then sat in the park for awhile in the sun. We all went for a meal and it was a good night, think everyone enjoyed it.
By the end of June I needed a weeks holiday from work to re-charge by batteries to try and get some energy. Bobby came to stay for a couple of nights, he had finished in Cornwall and he decided to have a week off before asking the agency to send him off on his next chefs placement.
Bobby has ADHD and Cerebral Palsy, he stopped taking the drug for ADHD when he was about 18, he decided that he would rather try alcohol! I can understand to a certain point that he wanted to go out and socialise but at the age of 22 he has decided himself that he needs to go back on it. Before he left he bought me a lovely bouquet of flowers. I hear off Bobby nearly everyday, sometimes I feel like I'm living his life with him lol.
My week off went by too quick and before I knew it I was back in work.

The first weekend in July Katie and Matthew came down, bringing with them the new man in Katie's life, Ross. Ross did the traditional thing and asked Bob for his permission to marry Katie. It was a lovely weekend, we went for a meals out and to Aberdovey.
They decided that they will get married in May 2012. Katie and Matthew are very happy and Matthew gets on with Ross. To me Ross seems like a lovely man and easy to get on with and most of all he thinks the world of Katie and Matthew.
Also in July I found a foot lady! Due to the peripheral Neuropathy in my hand and feet, my feet blister and I have peeling skin all the time on my feet, which is quite sore. Bob used to "see to my feet" as I can't do it myself. When I walk it feels like I'm walking on broken glass and hot coals. My feet do get in a mess and they need to be looked after. Michelle is my foot lady, she charges £12 and she even paints my toe nails for me she comes to the flat every 4 weeks, I so love being pampered!
July was a bad M.E. month didn't have a lot of energy at all, spent most of my time in bed when I wasn't at work. Migraines also started again, I don't usually get them a lot but when I do the are monster of a migraine.
I found looking after myself really hard, I hadn't the energy to make proper meals so i bought fruit chocolate crisps etc, their was always something for me to eat but a lot of the time I hadn't even got the energy to eat. I just needed sleep. Restful sleep, to sleep a night through would be lovely, waking up feeling refreshed would be great, but it just doesn't happen. So a lot of July was a blur and passed me by. I did manage to buy Bob a fishing License, he was so bored and fed up, so he was quite pleased.
I did get hurt in July, very hurt. Someone who I had known for nearly 25 years came to visit Bob for a long weekend. Never visited me at all while he was in the area.They even went through Machynlleth a number of times. I had been very close to this person, done a lot of caring and comforting when bad things happened in his life, shared the good times, well some of them, and the bad times. I expected him to be loyal to Bob, but I have never even received a text saying "I am sorry, take care" There is no bad feeling between me and Bob, we even go for meals as I have said. But that did hurt.
I have come to the conclusion that I don't need people like that in my life. Life is hard enough for me, not that I'm moaning but I can be doing without that kind of hurt.
Bobby came for a few days in August, then went off to Scotland, near Loch Lomand.
I went to visit Katie, Ross and Matthew for a few days in Carmarthen, Katie had told me that she was expecting a baby in March before I went so I was excited and couldn't wait to see her.
I went on the bus from Aberystwyth, well I virtually slept all the way their,didn't seem like I was on the bus very long at all. We had a good few days, I got to know Ross, spent some time with my grandson. Also it was the first time I hadn't cried and also the first time I slept through the night!. I slept each of the 3 night I stayed. They both told me I snored too!


I was given a load of plums in work so I asked Bob to come and help me do them and together we made 7 plum crumbles. I gave him 4 to freeze and I froze the other 3.
We had 1 for a meal when he came round  a few days later, was very nice..

Katie had her 12 week scan, our new grandchild is due 10th March 2012

On my own with M.E.

April 2011

Living on my own for the first time in my life is a big shock. Yes its true you can eat what you want when you want, watch the programmes you want to watch on TV, but to be honest I couldn't be bothered I was just so tired, and shocked that I had actually left. I left on the 18th and went to work on 20th I was so glad to hear someones voice. Everyone asked how I was doing, everyone got the same answer "Yeah I'm fine" then it would all get too much and I would break down and cry.
Matthew was staying with Bob for a week and I met them in Mach, he wanted us to watch him play football so off we went. Afterwards we went for a drink in a beer garden " Nanny are you still going to be my Nanny" well how I didn't cry their and then I don't know but I told him " yes Matthew I will always be your Nanny" with that he said "even when I am a hundred"! That did make me smile.
It did seem weird that I wasn't with him and Bob all the time like we used to be. They did come to the flat so Matthew knew where I lived.
On the Saturday my friend Cath and I went to Telford, we are good going round together because she has back problems so needs as may "sit downs" as me and she is an honest friend, even if I thought something was lovely, she would tell me the truth and so would I to her. We actually went on holiday together last year to Corfu and had a brilliant time. On the way home from Telford the train broke down, I think we got home about 4 hours later than we should have done. We had had a good day though.
Didn't see hardly any of the Sunday, maybe an hour in the morning, to take tablets, have a drink and a bit of a wash. Then at the most 3 hours in the evening. So then I don't eat properly, when I am awake like that I am not capable of cooking anything, I can just about make a cup of tea or I will have a can of coke and nibble on fruit or crisps, its like I am in a drugged haze state.

That is not my choice, I have no choice but to sleep, and its not a normal sleep either. I call it " a short course in death"The dreams I have seem so real that when I do wake up I don't really know if it was a dream or real, till I wake up properly, I think this is another reason why I am so tired when I wake up. After a day of doing something "normal" its as if I my body punishes it self and me. I can sleep through anything, we have had storms etc and I haven't heard them and now I have no-one to wake me up I sleep for hours on my days off. When I have work my alarm is not far from my head and it is very loud. To be in work for 9am I have to get up at 7am even though work is less than 5 minutes away. When I wake I am in such a state that people would think I'm hungover to say the least, also since I left I haven't been sleeping the night through, I always seem to wake at 3.30am and I need to drink something fizzy and lots of it. I don't move much in bed and the pain of being so stiff has also been waking me, then its really difficult for me to get myself out of bed and takes me ages.


I got myself up on the day of the royal wedding and went to cath's to watch it as my TV had not been connected. That was a bit of a blurred weekend for me when I got back to the flat I opened a bottle of red wine, by the end of the day I had drunk 2 and a half bottles and was totally drunk! I literally crawled to my bed and then just lay their till 3pm on the Saturday.

 This is a photo of me that was taken around April or May 2011.
Its the latest one I have got. I will put some older ones on to show you how I have changed!

This is me on Father's day 2009, we had taken Bob to a lovely hotel in Aberdovey for lunch. That time I think their was only Bobby missing. We very rarely get all of us together any more because Richard is in the Army and Bobby is a Chef and can be working anywhere.

Me and Katie ready to go out for a night with the girls, was a good night too.
 









                                                               

Me going through my red streaks phase lol, all short except on one side, I quite liked that but because of the sweats coming through my head it wouldn't look nice for long.
I think people think I am on Methadone or whatever when they meet me for the first time, I am always dripping with sweat from my head all down my face. i look like I have just walked out of the shower. I find this one of the most embarrassing things with this awful illness.


May 2011

Bob had painted the bathroom for me 2 days before I moved. Friends from work came and painted the hallway, landing, spare bedroom and living room,  to freshen up the rooms they did a great job and we had some fun, Veron helped me make my first ever vegan meal for Chris who was doing most of the painting. Really enjoyed it too. Its things like painting that I miss doing, I used to love ripping wallpaper off and painting the walls, but I can't do that anymore so have to rely on other people for help.
Sometimes I wake up and wonder where I am! A lot of the time I wake up and wonder what day it is. I can't get in or out of a bath without help and I always hurt myself in the process, this flat has no shower, they are supposed to be putting one in before Christmas. So I have washes in the flat and sometimes go to the leisure centre for a swim and then I can have a shower! I wash my hair over the sink in the kitchen. If its a day off and I'm not going anywhere, then I don't even get dressed  I haven't even got the energy.
Housework well, not a lot gets done, I do clean the loo, I couldn't cope with a dirty loo. As for the rest of the flat not much gets done but I don't make that much mess and if anyone moaned (nobody has yet!) about it I would tell them where the cleaning materials are kept and that they would be welcome to get on with it!.
I have a weekly container with compartments in for my tablets, I take 30 tablets a day sometimes  more if the pain is too much for me to cope with,  Bob wrote them all down , how many and when. I sit at the table and try to do a weeks supply at once, because of brain fog most times I'm lucky if I get 3 days done, I have a diary and a calender with everything written on, but do I always look at them......I forget so easily, I forget conversations that are only a matter of days old.
On May 26th I got a phone call from Bob. he was in Casualty in Aberystwyth hospital, Cath took me, we were in Aber as we had been to see a client. When I got to him I could see he was in terrible pain. He had been suffering with his leg since January. They had taken blood tests and were waiting for the results, they were supposed to scan him but their was a back log. Katie and Matthew  were moving from Tenby the next day to Carmarthen and Bob was supposed to be driving their that day to help her move. That was all he was bothered about,  well, as well as the pain in his foot and leg. Some of the results came back and they decided to let him go. So off he went to Tenby. He was telephoned the next day by the hospital and asked to come back, he wouldn't because he was in Tenby, they told him that he had got Deep Vein Thrombosis. A blood clot in his leg, that if it travelled could be fatal and that driving was the last thing he should be doing. He was told if it felt any worse he should get to the nearest hospital quickly! Luckily it didn't get any worse and he drove back and on the 31st of May I went back to the hospital with Bob in Aberystwyth and he  had a scan. He has to take Warfarin tablets and morphine for the pain. He could hardly walk. I felt very scared and worried, yes I had left him but I still loved him and didn't want anything bad to happen.

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.

Photo's of my Children when they were little.

Katie, Richard, Jonathan and Bobby, I love these photo's, seeing them is good for me because sometimes it triggers memories that I had forgotten about. Richard looks like he must has lost his front teeth. Jonathan has those smiling eyes and the cheeky grin. Katie is a very proud, big sister and last of all Bobby, I had been sterilised, but about 3 months later I knew I was pregnant, Bob wouldn't believe me because" You've been done" he would always say. So I booked an appointment at Doctors, I came out crying and Bob came out laughing. I was 3 and a 1/2 months pregnant! Bobby was born at 26 weeks on 31st December 1988 he weighed 1 pound 13 and a half ounces, I had been in hospital since Boxing day morning, he was on a life support machine for weeks, he had bleeds in his brain which caused Cerebal Palsy. He came home at 3 months old weighing 5 pounds.

Bobby was nominated for a Child of Achievement Award by his teacher and he was lucky enough to be picked and 
he met one of his hero's Mr Motivator.

 As you may of read in the wedding blog, Richard shaved off his eyebrows well in this photo, which he knew was going to be taken, he decided to chop his hair!
The school were very good when photographs were going to be taken, they would let younger brothers and sisters join in the photo.

                    All four of them in school.

The 3 boys on their own, Katie had now gone to Machynlleth School.

I think she was quite glad to get away from her brothers and have a year by herself in the big school.

Leveling out and a Wedding

Soon I started to have some better days, my muscles ached rather than having the spasms and my joints weren't quite as painful as they had been, at its worst the pain is as if somethings noring at my bones, my shin bones didn't feel like they were going to burst through my shins. I couldn't walk far but I could walk through the village only slow and I had to stop and sit on the bench when the pain got bad. One time I went to the phone box in the village and on they way back I just collapsed on the green by our house, it was dark and raining, I couldn't get myself up, eventually Bob must have wondered where I was and thankfully came looking for me.

Some times I had good days for quite a while, maybe 5 or 6 in a row and I would hope that this awful thing had gone, but it didn't, their was always a crash just around the corner. I loved having a bath, I needed help to get in and out but I loved to soak in the perfumed water and read a bit of my book. I am a woman that loves to be pampered, massages, pedicures, hair and nails done etc. The last bath I ever had was at a night time, my body ached so much and I was so so tired, but thought a soak would help, so I put all this smelly oily stuff in it Bob got me in it, then went to the phone box saying he would be back in about 20 minutes. Well I must of fallen asleep in the bath because the next thing I remember, is katie shouting to Richard to get dad, and she is holding my head out of the water. I must of slipped while I was asleep, because of all the oil I had put in,  Katie was having a hard time holding my head because it was so oily and the water was quite deep nearly to the top of the bath, I couldn't do a lot because I just kept slipping. Bob and Richard rushed in the bathroom and Bob pulled the plug! Getting me out was a nightmare  because of all the oil. 
Katie and Richard had been so frightened Katie was 10 and Richard 9,  they had both done so well, I could of drowned, that was the thought bob had too. So that was it Bob contacted the council and social services and after a couple of months they had put a shower in and took the bath out, the base of the shower was strong enough and big enough to take the wheelchair in

The amount of medication I was on was enormous, steroids, anti-depressants, water tablets, muscle relaxants and then the painkillers. I has been 8 and a1/2 stone for years going up to 10 and a 1/2 when I was pregnant. I suppose because I was less mobile and the meds, my weight started to increase, at my biggest I have been 15 stone, this really made me unhappy too, maybe I was to thin before, but now I had curves where your not supposed to have curves lol.
After a while I accepted that  Bob at times had to do all the personal things for me, the best way I could handle it was to have a laugh and joke about it and not really think to much, if I had, thought about it, all I would have done is cry, because to me, even if you have been together 10 years their are somethings that are done in private. I know and accept other people don't feel like this but that's how I am. Bob never moaned he just got on with  whatever I needed, he always says that it never made him look at me, or feel any different about me. We actually did like and enjoy the showers! That was the best part!

After Christmas that year we talked about getting married, Bob had been married before I met him. His wife is a funny woman, she didn't want him but neither did she want him to be happy with anyone else. It took 10 years for his divorce to come through, but come through it had, Bob bought me an engagement ring when we moved to Wales but we hadn't really talked about getting married. Then we did and decided to get married June 15th that year which was 1995.
Well the kids were so excited, it was like we were all getting married! Katie and Richard had decide a few years earlier when I had given birth to Jonathan that they wanted the same surname as him, so we did this by deed poll. So i was the only one without the Bessant name.
I wasn't nervous not at all, getting married was no big deal!. We booked the wedding at Newtown Registry office and sent out invitations, booked the venue for the party afterward, ordered the cake, bought the rings and new clothes for us all. 
My cousin Roslyn arrived the night before, as a gift to us she had bought the flowers. Well that night Bob slept on the sofa and Roslyn slept with me, well I don't think we got much sleep. Roslyn was the only person who knew how nervous I was about saying my vows. Because of the M.E. sometimes I stop in mid sentence because I forget what I want to say, or my words come out all miss mashed,back to front. I was so scared of making a mistake, I knew everyone would be listening to me which made me feel even worse. So most of the night I kept practising. Well the morning came, as it usually does! and the knots in my stomach were awful, I had had my hair cut and blow dried the day before and had slept in a hair net! but a friend was coming round jst to make sure it was ok and help me with make up etc and help with getting the kids ready. They were all so excited, their was a video recorder recording all of us everytime we moved.
They all looked so lovely and smart, Richard was Bob's " Best Man" he was really chuffed about this. He went up stairs to the bathroom and came back down with no eyebrows! I don't know what had made him do it, he just did it, and being quite dark it was very noticable, friends tried to "draw on eyebrows" with make up. They tried their best and that was it nothing else could be done, so that was one catastrophe and we hadn't left the house yet!.
We eventually all got to the registry office , where most of Bob's family were waiting for us. It was a lovely sunny day and as Bob got out of his car he was asked to go and pay! 

Their was only a little aisle, thank god and the room was full,I was shaking like a leaf, me the one who had said "no don't be daft I won't be nervous", well I was my heart was pounding and then the service began. Yes I made a cock up of it as I had known all along my words came out wrong and I forgot what I had to say. I nearly cried but I managed not too, and was so relieved to get out of their.

 In the photo is me, Bob, katie, Richard, Jonathan, Bobby, Natalie, Marc(2 of Bob's children from his first marriage) and Emma, a cousin of all the kids. The party was held at The Wynnstay hotel in Llanbrynmair, the buffet was wonderful and everyone enjoyed themselves.
Our wedding was how we wanted it, small, just a few friends and family, and it only cost £350.
So now I was Mrs Bessant.