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!

Shower man, high winds and ME

I was awake again most of the night, trying to get comfortable, then I would give up and get up and have a cuppa. My bed is lovely its huge and has the most comfortable mattress I could find. So I know its the M.E making my joints and muscles sore that I find uncomfortable. Try to imagine that your real comfy and dozing off, then your leg starts to burn up or your back starts to ache and then your feet start to have electric shocks, that's a typical night for me. Then when I do sleep, I have the vivid nightmares, so their is not a chance of me waking up and feeling refreshed and ready for a full day ahead!
I finally woke and got up at 10.00am, thought I had better have a wash as I hadn't yesterday, couldn't face any breakfast so just had a couple of cups of tea. Managed to make my hair look half decent, need of bothered because as I set foot out side I was nearly blown over with the high winds.
Actually it felt quite nice, really good fresh air after being in the flat in bed. I met a friend and went to a local cafe, I really fancied a sausage and mushroom sandwich with loads of brown sauce. Even with a cold wind blowing I'm still boiling hot so I had a cold tango to drink. We chatted for a while then I left to go pay some bills and get one or two things from the co-op.

Time was getting on and I had to be back at the flat for the "shower survey" really it means just to measure up! I explained to him that for me ideally it would be better for me to have a shower cubicle because I cannot get in and out of the bath like it is on my own. I did also tell him that if they won't take the bath out I had bought a step and a rail, but someone need to put the rail up for me. He is going to let me know what the powers that be have to say about this as soon as he can.
So keep your fingers crossed I might be able to have a shower in the flat very soon !

Well I'm hoping that I am able to go back to work tomorrow, so I will be going to bed soon hoping to sleep.
Take care everybody xx

 

Come with ME through Monday, Tuesday, Wednesday

I Woke many times through Sunday night, it was about 4pm the last time I looked at the clock. then I crashed! The alarm was not music to my ears, but I knew I had to get up. I though this is it just because I had a good weekend my body is being punished!
I eventually got to work, feeling really sore and tired and in need of a cup of tea and a cigarette before I did anything. 
My first appointment was great, a client that I had helped quite a lot last year had decided to come in and tell me that she learned so much from watching me she now felt able to carry on on her own.
That made my day I was so pleased, In 10 years that's a first!
After work I just got into bed and stayed their till about 10pm, had some toast and a drink then went back to bed.

Tuesday, I stayed in bed till midday, I kept putting off getting up because i knew it was going to hurt. I was really stiff, the sun didn't even want to come out much either. I managed to get up and get washed and dressed to meet Celia at work as we were going on a home visit  in Aberdyfi.
It a lovely scenic drive from Machynlleth to Aberdyfi, Celia took me through the back street and right up to the top, it was a steep climb even in a jeep. The views were stunning, I wish I'd had my camera with me..
It was quite a long home visit just over 2 hours, I need to get out and get some fresh air and a drink, I had felt a headache coming on whilst I was still with the client. I felt all bunged up and was starting to ache badly.
We found a lovely little cafe had a drink then Celia dropped me off home it was about 5.30. By 7pm I was in bed in agony, I couldn't get comfortable, dripping with sweat then freezing and shaking. I ached from head to toe, even my fingers hurt. So that is how I spent Tuesday night in agony coughing sneezing and rather fed up as I didn't hardly sleep. So colleagues got texts quite early that I would be in work on Wednesday.
Wednesday was a blur I had pyjamas, socks and a fleece on in bed, lovely for half an hour or so then a rush to get them off, then an hour latter getting them back on again. Not a very easy thing to do when muscles don't want to work. I was awake on and off all night, it was so hard to get comfortable I'd settle for a few minutes then feel the muscle go sore so I had to move.

Hope you all feel better than I do xx

Sunday's get together with ME

Jon and Bob came to pick me up, we were spending the day with Sarah  and her parents as its Sarah's 21st birthday. So after giving Sarah her presents we women went to a wedding fayre, which was really nice, and gave us plenty of ideas, even though most things are already arranged.
After that we had a rest, which was good for me, and Sarah did a manicure on my nails. I am really looking forward to the wedding in September 2012 as both families know each other, have gone out a few times and really get on.

Later we all went to Aberdyfi for a meal in the Britannia. Its one of two favourite places of mine to go for a meal, we were all that stuffed none of us had puddings. At the Britannia they have a balcony where people go and sit outside looking out across the harbour. I was their quite often either for a cigarette or just to cool down. I was looking like a melting ice pop again!
I had booked a taxi for me and Bob and it came just after 9pm and I was in bed by 10pm, but I had had a lovely weekend

She Cries,within ME

After a lovely day she cries..........and cries
Why?????.......She cries for her two lost lives
The first life.........her healthy happy life where everything was happy. Such a long long time ago, she hardly remembers those days.
Her second life....with ME but they were still happy. In love, had cuddles, had fun and just dealt with ME as it happened. Different everyday,  never knowing what was coming round the corner, but they coped and they even still had fun.
Then it changed, no happiness, no fun, no cuddles, he says people change, she doesn't think she changed.
Now she has a third life.....a life on her own......she cries......she works.....she cries.....she drinks,,,,,,,she cries.... she has fun.....she cries......she sleeps .....she cries.

Sunny Saturday, ME and new friends

Wow I cannot believe that we are now in October, time seems to be passing me by. I had slept with the alarm clock on the next pillow, I was determined that I would get up, even though most Saturdays pass me by as a blur or a muddled haze!
I was looking forward to today because I was meeting a new M.E friend. Nicky and I had joined the same M.E group on facebook. Nicky and her partner come to Machynlleth every 6 weeks so we decided to meet up.
I was a bit nervous, but I shouldn't of been, we had a lovely chat, talked about how this awful illness affects us, some bits got quite emotional, but I think the meeting did us both and Nicky's partner good. Hopefully we will see each other next time they come to Machynlleth.

It felt so good to be out in the sunshine, so I rang another friend and we decided to go and watch the local football team, was good fun and they won 4-0.
Even though I love the sun, it drains my energy and I end up looking like a melting ice pop!
So after football I came back to the flat and slept.
I am so thirsty all the time I could permanently be drinking, the fizzier and colder the better, with all this horrible sweating I should be thin!
I have recorded X factor, I can't watch programmes for that length of time, so I watch it in bits and cut out all the adverts, think its the best way really.

Well I'm so tired and I have another day of doing things tomorrow which I'm looking forward too so I need to go to bed.
Goodnight all !!

ME, Monday 26th - Friday 30th October

 Monday I woke and was looking forward to seeing Bobby and going for a meal in the evening.
First I had to go to work, after sleeping most of the weekend most people would be up and ready to go, but not me, It gets quite hard sometimes just to do normal things like having a wash, washing hair or getting dressed. The days are gone when I would be doing my hair and make up for an hour before going out..... I miss those days.
Bobby texted me whilst I was at work, he had taken Bob out for lunch in Aberystwyth and was looking to buy some jumpers to take back to Scotland ready for the cold weather.
Work was busy. so I didn't leave till after 3pm, I knew that Bobby and Bob would be a while, so I went back to the flat and waited for the whirlwind that Bobby is, to burst through the door. I didn't have to wait long, in he came, with a big hug for me and talking so fast I could hardly understand him!
Bobby stayed with me for the afternoon whilst Bob went back to Cemmaes to feed Storm and have a rest! Bobby wasn't happy with the shops in Aberystwyth at all, only brown and grey jumpers and he had wanted blue! He was soon on my computer talking to loads of women. Women seem to flock round Bobby like bees to a jam jar. I decided to have a rest, didn't really want to know what he was saying or to who!.

Just before we were due to go out Bob phoned and told us his car wouldn't start! So Jon and Sarah went to pick him up. I had recently brought a new camera, it had been set up and charged and was ready to use. I went to take a photo off Bobby, and a message came on the screen to turn camera off and on again, I did numerous times, still did not work. I was not a happy woman!
Disappointed, as we don't get many times when a few of us are together so I had wanted to take photo's and angry that the bloody thing hadn't even been used and was already broke!
We made the waiter laugh in the Indian restaurant, none of even looked at the menus, we all had the same starter, shish kebabs and Bob even had them for his main course!
We all enjoyed our meal and had a laugh, it was a bit weird when they all left my flat afterwards to go back to Cemmaes. Bobby came back the next day in the afternoon, I had slept till midday, rushed in started to prepare our meal, then he rushed off to get his hair cut. When he came back dinner was almost ready, we had about 10 minutes to eat it then he had to be at the railway station to start his journey back to Scotland.
Walking to the station and back, even the quicker way really hurt my legs, by the time I got back to the flat I was in agony, my calves were rock solid and my shin bones felt like they were going to burst through the skin.
I was in bed by 8.00pm, the next thing I knew Bobby texted me at 6,00am to say he had arrived back in Glasgow, from Glasgow he has to get a bus to Stirling then another to where the hotel is near Loch Lomond.
Wednesday I woke with my limbs feeling rigid. It seems to be taking longer and longer to be able to get out of bed just lately, I wouldn't mind but I'm 48 not bloody 88. I have started to record everything I want to watch on TV because I can't sit and watch for an hour, so at least when I do watch TV I can fast forward the adverts or just watch some of the programme and go back to it.
Work was quite hard too Wednesday, I had a first time debt client, so that was about 2 hours long, its very hard for me to keep concentrating for that length of time, thank god I can do the case work in my own time!
I got back to the flat had more tramadol and went to bed, woke at 10.30pm and just had some toast and marmite a drink and slept till 1.00pm Thursday.
I was really angry with myself for sleeping that long, I'm sleeping most of my life away and I don't have any choice! All I know is, its not bloody fair!!!!!
I did get pampered, Michelle came to do my feet and paint my toe nails, the feet part wasn't so good for me as the nerve endings in my feet have been really sensitive, so it was a gritting my teeth and trying my best not kick Michelle, but I ended up with beautiful bold purple toe nails!.
Jon came to visit while the feet were being done, he hates feet! and wasn't impressed. He took me for a drink in a local beer garden for an hour which was nice.
I was so shattered I went to bed at 7.30pm waking just gone midnight desperate for a drink and more pills.
Friday started off bad, because I had been in bed so long I was as stiff as a board, a dripping body and hair stinking of sweat! Not nice! Life would be so much easier if I had a shower instead of a bath.Well after nearly an hour in the bathroom, washing every bit that i could get too, I felt a bit better till I went back into the bedroom, bedding needed to be taken of, mattress aired and window wide open. Think you may of got the picture in your mind! Didn't have time to make my lunch so grabbed some fruit and went to work. I felt like I had already done a days work!
The day just seemed to drag, we weren't our usual happy selves at all, their was a couple of sad things, which made us feel worse and some other things that just pissed us off to be honest, so we were all glad to finish work. I can honestly say that Friday was one of the worst days at work for me in the last 10 years, nothing was happy I felt quite disillusioned with work, me and life in general.
Guess what I did when I got to the flat..............Slept ..............slept and slept