ME up at 2.30am wide awake!

Why the hell am I awake! its 2.30am and I just woke up feeling like its time to get up. I tell you this illness causes havoc! Once this starts happening its so hard to get back into a "normal" routine of sleeping at night. Think I might as well go and watch one of the programmes I have recorded, TV usually makes me feel tired. Well I watched a couple of Casualty episodes and by then it was getting on for 5.00am.
Back to bed then, my stomach muscles are sore from all the vomiting so its hard to turn over. But I did sleep till 11.00am.
I went on ebay today and bought some Epsom salts, I have read in some of the M.E forums that two cup full in a bath and soak for 25 minutes really helps muscles. So now I just need help in and out of the bath!.
I was supposed to go with a friend today to Aberystwyth, but just as I was about to text her to say I was on my way to her house she went passed in the car.....to be honest I was glad I saw her go past cos I would have walked to her house. So I came back to the flat did some pottering around and then played on facebook for a while. 
Then Bob rang to say he was coming over, we chatted a bit and we are going to Aberystwyth on Thursday as Katie, Matthew and Ross are coming to stay for the weekend and Matthew is staying with Bob for a week. Spoke to Katie on the phone asked her to help me in kitchen cooking as I can't do it all anymore, we decided on a nice menu for the weekend, which you will see in the weekends blog.
Even my fingers hurt bad today, typing hurts so I'm sorry its a short one tonight.
Night all
XX

ME and a very unpleasent long Monday

I was feeling okay when I went to bed Sunday night, I had been asleep for about three hours when I woke with my stomach feeling like it was turning over, I knew I was going to vomit and just made it to the bathroom in time, then while brushing my teeth, the other end started! That's enough of the graphics, but this went on every half hour till 7.30am.
It knocked me for six to be honest, I know nobody likes vomiting. but I panic and it frightens me, by the morning I felt so weak, I was still rushing to the loo but at least the sickness had stopped.I think I have strained my stomach muscles as they feel very sore.

This is another of those times that I wished I wasn't on my own, if I had been at home with Bob he would have looked after me, rubbed my back, and washed my hair, he was so good at looking after me. Its so hard to look after myself when I feel like this, then clean up the bathroom too.

I haven't dared eat anything and have only had a couple of teas, the rest I have drank is water.
I couldn't go to work so I stayed in bed a while, then got up and somehow got into the bath, soaked and then dreaded the getting out, took a while but eventually managed.

The day has seemed like two days to me my body is knackered but guess what ....my brain isn't! My brain has had too much time today and its made me dwell on things I don't want to think about.
My thinking today has been all over the place like, how will I manage as I get older, what if I die and nobody knows for days etc, loads of thought along the same line, I hate it when I'm like this, I have always been told " you think too much" " you worry about things that haven't even happened yet"
I wish someone could give me answers as to why I'm like this, I wish I wasn't
Night everybody
xx

M.E awake on a Saturday, Sunday is a blur

I really wanted Wales to win Saturday morning, I had even set my alarm to wake me. I have lived in Wales 21 years this November, their is great rivalry between the English and Welsh in sport, but as England were no longer in the world cup then I supported Wales. It was such a shame that they lost but they should be proud of how they played.
After the rugby I thought I would be going back to bed, but I felt awake, which was great, I don't see many Saturdays,  usually I sleep through most of them. This one was a gorgeous one too brilliant warm sunshine. I'd put the washing machine on when I went to bed Friday night so I got that out and hung it on the line outside. Hanging washing out hurts my arms so its a job I hate doing.
I decided I would have a coffee then go and have a mooch round the shops, Machynlleth is  a slower pace than Aberystwyth, no-one really rushes, lots of people know each other, lots of cafes and pubs! It was so nice to feel the sun on my stroll round town. I still felt okay so I decided I would visit Cath my friend and work colleague, we had a chat, spent some time in her garden in the sun.
I went back to the flat and started to feel tired and the muscles in my legs were starting to hurt and the shin bones felt like they were going to burst through. So I went to bed for a couple of hours, then Jon called in to see me on his way home, he had spent the day fishing with Bob. I then ate some more of the nibbles and started to watch X-factor. After about 15 minutes I gave in and recorded it, its easier for me to watch when I do this, I don't get all the adverts and I just watch the singing, its hard to concentrate, then their is all the booming noises and bright lights which just gives me headaches and migraines.
So after taking my tablets off to bed  went .
I woke up feeling like I had been to all night party! Wish I had. So it was a cup of tea and more tablets, but I did set my alarm for 12.45pm because my football team, Birmingham City were on TV! Yes I know you might think "oh my god" but i have supported them all my life, they are my roots, its where I'm from, when I was well we used to go and watch a lot of the games and were season ticket holders at one time. I must admit when they played Chelsea I didn't watch the match at all, I was just fixed on Frank Lampard and his legs!
I woke with the shakes, so I got my throw round me a hot cuppa and watched the match... we won 2.0. so it was worth it. I felt like %rap so I went back to bed till 6,00pm. This drunken feeling hasn't left me all day so I think I'm now going to go back to bed as I am supposed to be in work tomorrow.
I loved my Saturday awake, it was worth it even if its the reason why I'm not so good today.
Night everybody and take care. xx

Quite a good week for M.E.

Monday was a good day, woke up feeling quite good and ready for a day in work. I was quite busy and got loads done, which made me feel good too.Went to see a friend after work which was nice, had my nap, got up, had some pasta with pesto and cheese, a meal which my daughter Katie introduced me to a couple of months ago when I stayed at hers for a few days. I played a few turns at scrabble on facebook and then went to bed because I had a busy day planned for Tuesday.

Tuesday I got up at 7.00am as I had a hair appointment at 9.00am and it takes me roughly two hours to be ready to go out. I love being pampered, my hairdresser is brilliant, when she conditions my hair she gives me a head massage at the same time, its so relaxing and makes me feel better too.
Afterwards I went to Aberystwyth on the bus, taking my trolley as food was needed for the body shop party I was having Wednesday evening. First though I went for a coffee, to wake me up as I had virtually been asleep for most of the bus journey!. From the cafe I  watched the people rushing about in and out of the shops, old people nearly getting knocked over as the ones rushing pushed in front of them.Eventually I felt ready to go and join in the race, at my own pace! I usually buy my clothes online because its easier for me now to do that, but I went into Matalan and bought some black ribbed tights, a skirt and a white blouse. Then I went to get the nibbles for the party... I love to nibble, I can graze for ages on dips, cheese straws, Doritos, nuts etc so I bought quite a bit.
On the bus back to Machynlleth I fell asleep again lol, it seemed a long walk from the bus stop to the flat. Once I got in I just put away what needed to go in the fridge, then got into bed, I really needed sleep. I slept for a couple of hours, woke with sore muscles in my legs and back. Just as I had put everything away Jon called in, he made me laugh, Sarah had given him her bodyshop order and the money but he had forgotten it, then he couldn't remember if he should be picking her up from work or not! He is lovely but his memory is awful, and he hasn't got M.E, but I do think he has brain fog!
I rubbed this supposedly wonder gel on my leg muscles, took my tablets and painkillers and went to bed, the wonder gel didn't work, I couldn't get comfortable. I got angry and upset, just trying to do something most people take for granted I end up in agony. I got up and tried rubbing my legs to see if that would ease it, had cups of tea, smoked cigarette's and cried.
By 2.00am the pain had eased so I went back to bed and slept till 7.00am.
Wednesday morning my legs were a lot better and I was excited about the party, I went to work, it was a quiet day, not many clients, some friends who couldn't make the party gave me orders, 
so after I finished work I went and had a nap for two hours, I set my alarm to make sure I woke.
I put the nibbles out in the kitchen with the wine, pottered about tidying and then friends arrived.
We had a great time, food was eaten, wine drank, lots of stories were told and we all bought lots of pampering products. I did really well, when all the orders were in I had £125 worth of products for £30, so I treated myself and got some Christmas presents.
It finished about 10.45pm I just the left over food in the fridge and went to bed. It had been great, but I was shattered. Thankfully Thursday is a day off work for me.
Thursday I woke a 7.00am I hadn't been up in the night at all, actually I think I was in the same position as I had been when I went to bed! So I was stiff and so thirsty. After two cups of tea tablets and a cigarette it was back to bed. I went out like a light, it was 3.00pm when I woke again, another cup of tea and back to bed. I got up at 6.00pm, did some of the washing up from the party had some nibbles. By 9.00pm I was in bed for the night, I didn't wake at all till 7.00am, althougth I was really stiff and dripping with sweat, my brain woke up with out no brain fog! It felt great to wake up and feel awake!
Friday was very quiet in work, a colleague came back with me as we had to go back to work at 7.00pm for a meeting, we got to the flat had a cup of tea and both went to sleep! We had some nibbles and a glass of wine before we went to the meeting, think these nibbles will come in handy for me over the weekend. I got in about 9.00pm and felt like my brain had been frazzled, two hours of trying to concentrate on a Friday night is not good for me.
I want to wake early in the morning as I want to watch Wales in the Rugby World Cup.
" Come on Wales you can do it"

ME I'm so tired

4.00am and I'm up again, my body is exhausted, I'm desperate I need to sleep, I imagine this is how an addict feels when they can't get their next fix of heron or their next bottle of whisky, I've got the sweats, the shakes and their desperation!
Two or three cigarette's later, back to bed I go, not for long though, my muscles feel like they are bruised black and blue,  lying down is too much so sore, yet when I sit, my bum cheeks burn and sting with the pressure of my body. No matter what I do I'm in pain.....pain! The Disability living Allowance people say "pain killers, kill pain" so we have to use the words "severe discomfort" on these stupid forms that we have to fill out, but whatever words we use, pain or discomfort, it never goes away.
Their are times when I cope better but when I'm so tired the pain just seems to be worse.
 After a cuppa and some tablets I finally sleep at about 10.30am, it was a long sleep but a weird one! I can hear myself talking to Bob and the kids and I keep thinking why aren't they talking back to me, why are they ignoring me, i go looking in every room of the house and I can't find them, finally I am shouting their names, which is what wakes me, I'm dripping with sweat and got the shakes, of course they can't hear me, I'm here in the flat, on my own.
Once I come round properly, I realise its nearly 6.00pm, and I feel a bit hungry, ham off the bone, a tomato, and Stilton cheese with a couple of crackers. Afterwards I washed my hair and then soaked my feet while I watched who the judges got rid off in X- Factor. My favourite 3 are Misha, Craig and Janet, I even played a bit of scrabble on facebook and posted in a couple of the M.E groups I belong too.
So after an awful beginning to Sunday the ending was quite good. 

I went to sleep about 10.30 and got up at 7.00am for work

Chocolate, crisps & ME Sat 09th Oct

My Saturday started at 4.00am, with a cup of tea, a toffee crisp two tramadol and two cigarettes! Oh god I was so tired in my brain and in my body, pain in my muscles in my legs and arms had woken me.
Wales and Ireland played rugby, a very good game, pleased that Wales won, I'm English but have lived in Wales for over twenty years. Next was my main match, feeling quite pleased pain had woken me now, England verses France. Well, England were dismal, just like the bloody weather!

Took my morning tablets and some tramadol for the pain then  went back to bed for a while still couldn't sleep because of my muscles so I just rested. Katie, my daughter rang and we had a good chat, she is soon moving to a bigger house and reminded me its 11 weeks to Christmas.
While I was chatting to Katie my mobile rang, it was Bob, Jon and him were calling in on me for a coffee. I hadn't even got washed, so I smelled sweaty, I was still in my Pyjamas, hair sticking up all over the place but hey why worry, they are both used to seeing me like this, so it didn't matter, not worth getting myself all stressed. So we chatted for a while, Jon is happy he is going back to his old job on Monday and I had two more drinks. When they went I felt tired so went to bed and thankfully slept for a couple of hours..
Woke again with sore muscles, more tramadol and baclofen and another cuppa with some sweet chili crisps, I couldn't of prepared real food if I had wanted it, my arms hurt too much and the affects of all the tablets were beginning to make me as "high as a kite" Bobby then texted me to tell me he had left Loch Lomand and was now in Aberdeen! Bobby never stays anywhere too long, he gets fed up and moves on!  I needed a chunky kit kat, I had got the munchies luckily their were three in the fridge so I ate two!.
Richard then texted me about his daughter's birthday on the 18th of this month, I did really well today, texts off two of my children and telephone conversation with Katie and I saw Jon. So I had had contact with all four of my children in the same day, that doesn't happen very often, so I was quite happy.
The rest of the day has past by in a bit of a blur, I recorded X Factor, then watched it at my own pace with out the adverts. I liked Misha, Craig and Janet. Had another cuppa and crisps and a couple of cigarettes and my night tablets and more tramadol and went to bed at 11.00pm. You would think that I would be sleeping all through the night with all my medication, but no....its now 02.41 and I have just written this blog and now I need a cigarette before I try to go back to sleep


 

ME and my horrid Friday, made better by Friday night

Friday started awful by being awake most of the night, finally falling asleep about 5.00am then waking at 7.00am to a loud horrible alarm clock then realising that I'm drenched in sweat and my hair stinks!.
Not even a cup of tea and a ciggarette, first its to the bathroom, hair wash and body wash! Still got all the aches and sniffles of yesterday but I need to go to work for my own sanity! Another day on my own feeling ill will not do me good mentally!
I have a big debt case to work on from the home visit I did Tuesday, which I started, then decided I would put the coffee on for the others so it would be ready when they got in. A man I know came for a chat, his wife has cancer and he is not coping well at all, she is a lovely woman has done loads for the community, it makes me mad, just lately we have lost a few really good people to this awful disease, so I found it quite hard to be positive for him. Then I realised the milk was "off" so I had to go back out in the rain and wind to get more. Do a bit more on the debt case and the computer "looses my work" So had to start again, then the programme wouldn't bloody work, so I had to phone the "helpdesk" " just log out and log in again" they said. Yes it worked but why did the stupid programme do it in the first place, I can't keep logging in and logging out all day.

Next I wanted to print some letters, the photocopier decides its going to add to my problems, paper jams all over the place in nearly every compartment, it was starting to feel like I should of stayed home in bed! By this time I was not in the best of moods, I felt like I was going to scream or cry.....then something else happened and I did cry.....I'd had enough, I felt like quitting my job, packing a case and just going, going where I haven't a clue, but that's how I felt. So I cried and had tempers at myself for about an hour, then it was time to go.

I got back to my flat and was about to pour myself a very large port and lemoade but thought better of it and made a cuppa instead and smoked two cigarettes! I had said earlier that I wasn't going to go to the meeting, but I felt afterwards that I was wrong so I decided I would go. 

After the meeting me, Linda, Brenda and Gorden went to the local Indian resturaunt, We started with a stiff drink, I think we all needed one, then a bottle of wine. I told the others about the banquet meals, that me and cath had had previousley, so that was what we had, we all felt so stuffed, but it was gorgeous and leftovers were taken home by the others, for their various animals to eat tomorrow.
I hope I sleep tonight, my brain is tired and my body is knackered!