Weekend with family & a week ME with Matthew & Bob

Friday I woke up excited that Katie, Ross and Matthew were coming for the weekend. I had tidied the flat the evening before, the only thing I had to finish was making the spare bed up which I was going to do when I got in from work.
Work was quite busy so the day seemed to move quite quickly and before I knew it I was back at the flat making up the bed. I need to rest for a couple of hours, so I went to bed and slept for 3 hours. Katie texted at 6.30pm to say they were just leaving, so it would be 8.30pm when they got to me.
We were having jacket potatoes, Cumberland sausages beans and cheese for our meal, and I got most of it done just as the arrived.
I think Katie had packed enough stuff for a fortnights stay lol, poor Ross looked shattered carrying all the bags. I hadn't seen Katie for quite a few weeks, she was only about 6 weeks pregnant last time I saw her. Now she was 20 weeks and the bump had grown quite a lot! Matthew had grown taller too, and he was on a high because he knew he was staying with Grandad for the half term school break.
We all enjoyed our meal and Ross washed up, think he was trying to impress his future Mother-in law! Ross and I enjoyed a bottle of red wine, I was boiling hot and sweltering,I had put the heating on as Katie is opposite to me, she is thin and feels the cold. I am not thin and feel hot all the time!
We chatted and chatted and then I looked at my watch and it was 1.am.  
Off to bed we all went, Matthew had decided he was sleeping in the spare bed, so Katie and Ross ended up in mine and I slept with Matthew, as I got into bed a little voice said"is it morning yet Nanny" I quickly told him it wasn't and that was it for me till he woke us up at 8.00am. I had had a really good sleep for a change.
After we all had breakfast and me having 2 cigarettes with 2 cups of tea we had a walk round Machynlleth and ended  up in the cafe in the park.

 This is my daughter Katie and her partner Ross.

My grandson Matthew who is 6 years old climbed up a tree in the park, he loves coming back to Machynlleth to see us. He and his grandad are so very close, they are best buddies.
Jon my son and his partner Sarah came to join us for a while, then Jon had to take Sarah to work. After the park Katie, Ross and Matthew went to Cemmaes to pick Bob up. We all had lunch at my flat then went to Aberdyfi. 

  Bob and Matthew on Aberdyfi beach, it was a beautiful sunny day but with a wind, we enjoyed a good hour on the beach, I sat on a lovely comfortable piece of driftwood in the sun watching the others playing football. Bob was in goal, using his walking stick to hit the ball.
Katie had had a couple of sharp pains low down and felt uncomfortable so we decided to go for a drink in one off the cafes.
Ross really enjoys the countryside and sea, he is from Essex and moved to Tenby about a year ago, that's where he and Katie met and now he lives with Katie in Carmarthen, but he thinks where we live is beautiful, which it is. Now I have my camera back I can take more photo's to use in the blog.
We went back to my flat and we prepared our evening meal, chicken stuffed with Stilton cheese and wrapped in parma ham, loads of steamed veg, new potatoes and a white wine and mushroom sauce and the one thing Ross had been dying to try homemade fresh pineapple upside down sponge with custard.
The meal went down a treat, the sea air had made us all hungry! Ross loved the pudding so Katie did promise she would make it for him!
Matthew decided he was going home with Grandad. So we decided to watch X Factor together then Ross and Katie would take Bob and Matthew back to Cemmaes. 
Just as they were about to leave Katie noticed she was loosing blood! Ross took Bob and Matthew and I got Katie to lay on the sofa with loads of cushions so her legs were quite high. 
She wasn't in any pain at all, which was a good sign so she just rested for a while. I took my tablets, Ross and I didn't have any wine just in case he had to drive Katie to hospital. We decided to phone the hospital, they wanted Katie in to be checked over and Katie wanted me their as well. 
It was now about 1.00am and I'm having to fight against my tablets to stay awake as well as trying to stay calm for Katie and Ross, calmness  didn't come easy, I could feel my heart racing with fear and panic. Thankfully the scan showed the baby was okay, probable cause is a low placenta. 
We got back to my flat at 4.30am, we were wide awake by now so had a cup of tea and chatted for a while, then we were dropping like flies! The tiredness hit us and we went to bed at 5.30am.
I woke and by my watch it was 9.15am, so I though just have a few more minutes, the next thing I hear is Ross getting up to put the pork in for dinner and the door bell ringing, Katie had heard the bell before but just ignored it. Ross went down to answer it, Jon appeared and it was 1.15pm.... my watch had stopped.... Jon had been ringing the door bell for nearly half an hour, then had walked round town to see if he could see us!
I rang Bob to tell him about our eventful night  and that we had only just woke up, he was shocked but relieved that Katie and baby were okay. I felt shattered, arms and legs hurt so it was tablets, painkillers, cups of tea and cigarette for me. Slowly I came round to normality. 
Ross helped do dinner and he was looking forward to homemade apple crumble, I had promised to save some for Bob, Matthew and Jon to have on Tuesday. So while Ross helped me do dinner Katie went to visit a friend.
Our meal was lovely and Ross and Katie washed the dishes while I sat down and rested.
They left at 7.15pm and fatigue overcame me and I was in bed at 8.00pm.
It was a lovely weekend apart from Saturday night Sunday morning, we all could have done without that bit of trauma.
I slept through the alarm on Monday morning and woke at 8.00am I had slept solidly for 12 hours, but I still felt shattered, that's it with this illness, even when you do sleep you wake feeling zombefied! Somehow I managed to get to work, I knew I looked awful from the quick glance in the bathroom mirror earlier! I just hoped I didn't put my client's off! We were busy too and by the end of the session I was ready to drop, but I knew I had to wait for a phone call off Katie as she was going to hospital for a detailed scan and was going to ask the sex of the baby. At about 3.30pm the call came and she told me she was having a boy and that he was going to be called Charlie James and that everything was okay and she would send me a picture of the scan.
After the call, my bed was calling me, I just needed a cup of tea, painkillers and a cigarette first.
I slept till 8.30pm, woke felling like death warmed up and rang Bob to see how his and Matthew's day had been. They had been having fun all day and Katie had rang to tell them the news. Bob had arranged to borrow Jon's car for Tuesday so they were coming to mine after they had dropped Jon off at work about 9.00am. More tablets and painkillers then bed for me as I was so fatigued I could hardly stand up.
By Tuesday morning I started to feel a bit better and was up and dressed for when Bob and Matthew arrived. We decided to go to Aberystwyth, it was quite a nice day weather wise and we had to go to Halfords for Matthew to pick a bike, that Nanny and Grandad could tell Santa that Matthew would like for Christmas.

 We walked to the sea front in Aberystwyth and had a latte at the outside cafe, I love sitting their just watching the sea, to me it very relaxing. I don't like the beach at all here, but sometimes looking at the sea I have seen seals and dolphins.

 Bob and Matthew, Matthew on a day where he didn't really want his photo took!
Matthew picked his bike, so we now know which one to tell Santa!
We have always bought him his bikes from when he was little and he had a trike.
When we got back to the flat Bob and I made a soup, Chick peas, celery, fennel, onion, carrots, tin tomatoes, fresh basil and oregano, and half a bottle white wine and vegetable stock Bob did all the chopping up as I can't do it any more, cook, then blend.

Jon was coming too for soup and apple crumble. I had to leave before he got their as I was on the evening session at work. That really made me fed up because we had no client's and I had missed having tea with them all.
When I got back to the flat I then went and gave out some of the bodyshop orders to people who had come to the party.
A friend I went to told me her daughter had started doing cleaning for people. I knew I wasn't doing as well as I had liked looking after the flat and it had started to get too me that it wasn't as clean as it should be or as I liked it. So I contacted her and I arranged for her to come and clean the flat for 2 hours a week whilst I was in work. I went to bed about 10.00pm, I did think about my blog but that was as far as it got, I hadn't got the energy to concentrate and the muscle in my right arm had spasmed and I couldn't even pick up a cup of tea, the pain was too much. I had been given this Voltrol gel so I put some of it on, but no good, so it was painkillers and bed for me.
Wednesday was the first day my cleaner was coming, to be honest I was looking forward to coming back to the flat after work, it would be all nice and fresh and clean.
Work was very busy again, one of my colleagues had been away so we had a lot of catching up to do as well. I popped out of work and went to the market meat man and bought a load of chicken breasts, this is the meat I mainly eat when I do have a main meal. Going into the flat after work was lovely, as soon as I walked in, the fragrance of freshness hit me, everywhere looked lovely and clean, thank you to my lady that does!
Then I walked down to the hairdressers where I knew 2 of my friends were having their hair done, we had a good chat and a few laughs. I went back to the flat shattered my arm wasn't as bad but it still gave me a sharp pain when I picked my cup of tea up.
I had a rest on my bed for a couple of hours, it was lovely, I lay on top of the bed and the sun was shinning through the window.
Another friend popped round about 6.30pm to see if I needed anything and to make sure I was okay, she stayed for an hour or so. I had eaten lunch at work and now was too tired to eat so it was a cup of tea, tablets and bed for me at 8.30pm. I woke a 3.00am shivering and dripping with sweat, I had hoped this had stopped as it had been a few days since this had happened, so it was a wash, tea and cigarette then I got back into bed on the other side!
I woke this morning to my mobile phone ringing, I had again slept through the alarm, it was Bob ringing to tell me he and Matthew were on their way to the flat.
I can't do anything quickly, so when they arrived 2 minutes later I did not look my best to say the least.
Bob made us drinks, I had sugar puffs thinking they might give me some much needed energy and the a couple of cigarettes sat by the window. I tried to wash my hair but my arms were hurting so Bob washed it for me, then I needed to have a rest after standing with my head over the sink. Bob must have noticed I looked awful so he told me to go back to bed for a couple of hours.
He woke me at 12.30pm, I felt better than I had so we went out for a walk in the park and then visited a proper old fashioned sweetshop. I could of had a quarter of everything in their lol, so could Bob, well its a 100 grams now not quarters anymore! Matthew was gobsmacked, their was so much choice, in the end he had a few of about five different sweets. I got some chewy apple bonbons and Bob had some chewy teacakes,they were all lovely, I think it may be a regular shop I visit!
Jon came and picked Bob and Matthew up and took them home about 6.30pm. Then I suddenly realised I hadn't done any work on my blog for nearly a week!
So this is what I have been doing tonight from 7.30 till now 10.55pm.
Now I must go to sleep as my bed is shouting at me. Goodnight xx
 

ME and my Husband go food shopping for the weekend

I was awake at 3.00am, my arm and leg muscles were causing me severe pain so I had more Tramadol 2 cups of tea and 2 cigarettes. 4.00am staggered back to bed, I slept from about 5.00am.
Bob was arriving at 10.00am so I got up at 9.00am feeling quite dopey, again like I had been to a great all night party! I had my sugar puffs before I did anything hoping that the sugar would bounce some energy into me quickly. It didn't, having a was seemed like "in slow motion" I was still getting ready when bob arrived at 10.00am, I had sat down for 15minutes and had a cup of tea and smoked 2 cigarettes! He was okay, made himself a coffee and just chatted till I was ready.
Their are some beautiful views on the way to Aberystwyth next time i go I will take some photo's to put on my blog.
Our first shop was Morrison's,Bob held onto and pushed the trolley rather than use his walking stick.
I got lots of satsumas, as I know my grandson Matthew loves these and lots of veggies, he's not so keen on them lol. Then the cheese and meats, all of us like these, Katie's partner Ross has been told about my pineapple upside down cake so this is one of the deserts the other is apple crumble all of us love to eat these too. We bought so much we very nearly had to go and get another trolley. 
Just as I started to queue I felt a blood sugar drop coming on, the sweat started, the shaking and my eyes weren't focusing properly. I felt really ill, luckily our shopping was now on the conveyor belt being checked through, so I just had to hang on and not faint for hopefully 2 minutes. I went and sat down in the cafe part I had told Bob what I wanted or rather needed. Once I ate and drank after about half an hour I was fine again.
I told Bob how much I had spent he just grinned and I said when its just me I hardly bother, his reply was" well after I have paid everything I have to pay out like electric, water, car insurance I have £12.50 a week left to spend on food. Since I left he was put on Job Seekers Allowance which is £67.50 a week! This shocked me to the core, that he only had £12.50 for food! How anyone lives on that I don't know. A politician a few years a go lived on Job seekers allowance for a couple of weeks, yeah couple of weeks is nothing though, he would have to buy any clothes or shoes in that time, he paid for his electric through a meter, he never went through a Christmas living on that benefit, so really he has no bloody idea what its like to have to live on such a low amount of money!
I have been giving Bob Bags of shopping and I buy my dog his food and pay any vets bills and I give Bob a pouch of tobacco most weeks. and we go to the local Indian restaurant sometimes and I pay for him. I give him money if he is going on the boat or fishing with his brothers, its always a battle to get him to accept it, but I make him have it, because if I hadn't left he wouldn't be living like he is.
I don't think if you are on this benefit you can live a life like a  normal person. Its degrading, its depressing and it gives people no hope.
We went and got a bag of chips and sat on the bench and ate them, they were lovely and I had lots of crunchy bits in the bottom of mine, we chatted while we ate, mostly about the kids when they were young.
After we went to lidl and Iceland all our bags were full, well Matthew is staying with Bob while he is on half-term so I got them some goodies and Katie is taking other food, Bob and Matthew love being together.
We got back to the flat and I started to unpack some of the shopping while Bob made a drink
I was starting to feel shattered, we drank our drinks and Bob went home to walk the dog and feed him. I was in bed at 5.00pm and I think I slept as soon as my head hit the pillow.
7.30pm I awoke, I knew Birmingham City were playing football tonight so I watched the Spurs game till halve time, then they showed Birmingham, they won 2-1, I was well pleased with that!
I decided to strip the spare bed ready for my guests. Matthew has already been told that he is sleeping with Nanny in her great big bed.... he seemed quite pleased with that....
Well by day has seemed a busy one. My Epsom salts arrived today so I shall try and get into the bath tomorrow evening and have my first ever Epsom's Salt bath, they are supposed to be wonderful.
I will let you know, take care all of you, xx

Wednesday work and later ME in the Autumn sunshine

I was up again at 2.00am this morning needing  painkillers, a cup of tea and of course a couple of cigarette's, think it was about 3.30 before I slept, then it felt like only 5 minutes before the alarm was screaming in my head!
I am having a craving for sugar puffs, so that's what I had for my breakfast, haven't had them for years but I am making up for lost time, I'm eating quite a lot and not just for breakfast! I had wanted to go to the fruit stall and meat man on the market before work but I just didn't have the energy and their was no one who had any spare time at work to go for me, so will have to hope that next week I have the energy to go.
Work was busy today, lots of clients and paperwork, the muscles in my arms are hurting like hell from all the typing. So I'm doing this blog in 5 minute sessions.
A client today who is claiming Disability Living Allowance had lost his claim for Incapacity and been told he is fit for work! How on earth can a Atos give a person who is disabled no points and tell them to get a job. I don't understand why the government are letting this happen to people who are clearly ill and vulnerable, and where the hell are the jobs, who is going to employ people with disabilities over people that haven't got any problems. Okay rant over! for now!
I couldn't go for my usual nap after work as I was expecting a maintenance man from the housing association to visit, so I just sat in my living room by the window, a cup of tea and a cigarette, gazing at the view, brilliant autumnal sunshine shone over me, it felt wonderful, looked wonderful and it was wonderful I  just sat their watching the birds and the branches of the trees swaying in the breeze for quite a while before I felt my eyes drooping and my head nodding! Yes I was about to fall asleep. I got up and made a coffee realising it was 5.45pm, the maintenance man hadn't been so I wrote it on my calender as a reminder  for me to ring him tomorrow .
I was expecting more visitors about 6pm and they did arrive. Brenda and Zoe, Brenda is my boss at work as well as being a friend, Zoe is her daughter who lives in America, she is also a friend and we keep in touch on facebook. We had hugs, a glass of red and chatted lol, they were only supposed to "pop in" and then go and get fish and chips! Nearly an hour later, they rushed off to get dinner, while I finished the bottle of red wine!
A lot of people with M.E have a bad reaction to alcohol, I'm quite lucky as I don't, so I do enjoy the odd glass or two of wine, an archers and lemonade or even a few rum and cokes etc etc !
Well hopefully I will sleep tonight (the wine might help) as tomorrow I'm going to Aberystwyth with Bob (my husband), for food shopping as Katie, Ross, and Matthew are coming,( our daughter, her partner and Matthew is our grandson) for the weekend, a menu has been worked out, Katie is going to help cook now I just have to go and get it all. Plus I want to look at the new NEXT shop that recently opened.
Night everybody
Take care
XX

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!

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