bulge

My stomach has a definite bulge at the moment, and its not the only part of me that is getting fatter. And so I have decided that I can't just become a blob, I need to do something about it. So I am going to be more careful about what I eat, and attempt to gradually do more exercise. I know that I can't suddenly do more exercise, I need to do it gradually, a sudden increase can increase my symptoms. The past few days the eating thing has happened, but the exercise thing not so much coz of this silly old cold. Thankfully that is starting to go a little bit now. I want to try swimming and some gentle walking, and see where we go from there.

eh?

I don't get it. Last night I slept really badly. The sore throat has become a proper cold and that combined with the husband staying out until 1 in the morning (dirty stop out I know) meant that I didn't really sleep much at all. And yet today I don't feel as bad as I do on days when I've slept ok. I don't really get it, maybe tomorrow I will feel the unbenefit of the no sleep. We celebrated six months of marriage on Friday - and because it was on cheap bought some posh ice cream. I got it out of the freezer today to enjoy a bit more and instead of putting some in a bowl like a good girl, I ate it straight out of the pot. What a mistake. Putting it back in the freezer with some in was one of the hardest things I've ever done. And knowing that it is sat in there it is kinda hard to leave it there. Guess it won't be long until that's all gone.

rest

Yesterday at the CFS group we were looking at rest and sleep. I think that I have got the rest thing down ok. Most days I get rests in when I need to, and I seem to do ok at the actual resting, at turning things off (including my brain). But I'm not so good at the sleeping thing. Turns out that people with CFS tend to get a lot of REM sleep, which explains the bizarre dreams I have. But don't get enough of the deep refreshing sleep. I now have some tips on how to have a good bedtime routine and relaxation techniques that should help me to get more deep sleep. This week will be about putting them into practice and hoping they make a difference.

scrape

I woke up today with a sore throat, that may be why I was feeling so rough yesterday. I still feel fairly lousy, but all the rest I got yesterday as I couldn't do much else has helped. We were meant to be going to friends for dinner last night, they had graciously timed it so that I could go. Unfortunately due to feeling so lousy I couldn't go. The Husband had a lovely time and I'm really glad he still went. I'm aware that me being poorly means that his life has changed some what and that he doesn't always get to socialise as much as he might otherwise. Unfortunately the car got scraped as he was at the friends. Hopefully it won't cost too many pennies to get sorted.

bluerggh

Today I feel very rubbish. I think it is the busyness of the weekend catching up with me, along with a medical yesterday an cooking two dinners (due to a drop plate of food). The medical yesterday was to allow me to claim the not working part of job seekers. It involved answering a lot a lot of questions. Thankfully the lady doing the medical had to keep typing things into her computer so I had little pockets of time where I could think about nothing. I know that on bad days I still need to do things, but this is being a hard day to do that.

instant

I've been reflecting a bit on things that were said at the group I went to on Thursday. It seems from what people were saying that really they are looking for an instant fix to this illness. Whilst none of them said this it was apparent through what they were saying that this is what they were after. I think that if you are looking for an instant fix to CFS you are unlikely to recover. It is only by realising that it is a slow process, and one that you have to be involved in that recovery will take place. It is not like just taking some tablets, or rubbing a cream in, you have to be committed to your recovery and take an active part. This realisation is where recovery begins.

group

Our local CFS service run a group that is not a support group but rather come and learn more about how to manage and deal with your CFS group. It runs for nine weeks and I started it this week. I think it is going to be really useful in learning more about CFS and learning more about its management. The group itself is quite an interesting mix of people. Hearing other peoples stories made me realise that we are actually managing quite well, both in terms of pacing, coping and mentally. I left this week feeling reassured that we are managing ok. Next week we are learning about sleep and resting, and each week we get to learn a relaxation technique. I'm looking forward to knowing how to rest and relax a bit better.

viewing

Today I am really tired, have pain in my lower back and down my left leg/foot, headache, shoulder pain, nausea, and go dizzy when I stand up (that's a new one for me). I'm struggling a bit with motivation as well, even motivation to get food which isn't great as the lack of energy doesn't help with the lack of motivation. I didn't think I overdid it yesterday despite a little trip to town, but maybe I did. Today I can't rest totally as we have someone coming to view the house later so there are some bits of tidying and cleaning I need to do. This is actually probably a good thing as I find that doing things is less draining than watching TV, which is probably what I'd do if I was doing nothing.

spoons

So today I feel unusually good. No idea why. I'm finding that writing down everything I do helps to make sure I am pacing myself well, and I've slept well for three nights in a row, I guess that will've contributed to feeling ok.

I came across a link to this on someone else's blog. It's written by someone with Lupus, but goes a long way to explaining what its like living with CFS. http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/

Shopping

I had been given some pennies to spend for my birthday, and we went out to spend some of them yesterday. I have to be careful with the whole shopping thing, it can be hard to make sure I don't over-do it as you want to shop properly and get all your after. We helped to combat this by doing some shopping, going home for lunch and a rest, and then doing some more shopping. This along with a nice sit down while the husband tried some clothes on meant that I didn't over-do it. And I managed to get some lovely clothes! Nice one!

Sleep

I often find it really hard to get a good nights sleep. It can take me ages to fall asleep, and then I wake up several times during the night, quite often finding it hard to go back to sleep. And like others with CFS in the morning I feel very unrefreshed. Last night I was blessed with an amazing nights sleep. I must have settled down about 9ish, went straight to sleep and despite waking up several times I went straight back to sleep each time. It was truly great to have felt that I have actually slept, it makes such a difference.

yesterday

I decided yesterday I was going to have a day off from being ill. Well not a day off from the actual illness, but a day off from thinking about anything to do with it, so I didn't blog, didn't keep my what I've done diary, didn't think about the various symptoms I was experiencing, just didn't think about it. It was refreshing to have a day off.

ownworstenemy

I have the return of the horrendous headache. I don't like it one little bit. But I think it may be here because I am my own worst enemy. You see if I rest regularly, and make sure I don't over do it then my symptoms lessen. But I am rubbish at resting, and not brilliant at making sure I don't do more than I can manage. If only I would learn I would really help myself.

Symptoms

This one is more for me than for anyone else to read. Sometimes I find I have illness that I am not sure if it is CFS related or not, for instance yesterday I had some bad stomach pains. So I am putting here a list of symptoms of CFS so that I can refer back to this when I am not sure if something might be CFS related or not, rather than having to google it each time. The list has been made from several medical websites.

Physical and/or mental fatigue

Unrefreshing sleep

Sleep difficulties

Muscle and joint pain

Headaches

Poor concentration and short term memory

Difficulty organising thoughts and finding words

Nausea

Brain fog

Stomach difficulties not dissimilar to Irritable Bowel Syndrome (eg constipation, diarrhoea, bloating, cramps)

Frequent or recurring sore throat

Tender lymph nodes

Chills and night sweats

Sensitivity or intolerance to light, alcohol, loud noise and certain foods

Mood swings

Flu like symptoms

Palpitations

Dizziness

Sweating

Visible muscle twitching

Psychological problems (depression, irritability, panic attacks, anxiety)

Dizziness

Excess sweating

Balance problems

Difficulty controlling body temperature

Jaw pain

Weight loss or gain

Eye pain or dry eyes

eating

Yesterday I was very good, had lots of rests, didn't over do it. Until the evening. We were out to celebrate multiple birthdays in the family. The table was booked for 6, which is good as I need to eat quite regularly, and can't cope with eating too late at night. However we didn't order our food until nearly 7 o'clock, which meant we were quite late (for me anyway) eating. There were several people there that did insist on chatting a fair bit, something that is also quite tiring. And so today I am quite a tiredy girl. I've not made it to church today, it was too much this morning to get ready in time, and I knew that there would be more people who would insist on chatting! It being Sunday and the husband having no duties at church this week meant that for the first time in a long time I got to wake up to hugs and kisses, always a good way to brighten a dull day!

Ow

Today I am very hurty. I think I might have overdone it yesterday. During the day I was really good. I had a few things to do like the washing up, that I was good and did in two lots instead of trying to do it all in one, and I put the washing out and did a bit of tidying up. I had a bit of computer time and watched a bit of telly, and in between all of that I had lots of lovely rests. And then at half 4 I started cooking dinner as we some friends coming round. I could easily have let the husband take over the dinner cooking when he got in, but I was enjoying it and felt like I was ok to carry on. This morning I realise it I was not ok to carry on, and the pain in my head and body is a reminder that I really should limit my activities, and let other people help me out instead of trying to be so independent.

nausea

I find the constant nausea to be incredibly annoying. CFS seems to come with so many symptoms, some of which I experience and others which I don't. I don't like any of them, but I especially don't like the nausea. Many of my other symptoms seems to wax and wane somewhat, but not the constant nausea. It is yucky.

Pathetic

I have spent a few days at my father's house. It was nice, but I do find it harder to pace myself when I am away from home, and even harder when I am away from the husband.

When away I got to see the very lovely Amy and Rich. They are very super duper people that I wish I could see more of. While we were chatting Amy asked me if I was keeping a diary of what I was doing, how was pacing myself. This is something that the Chronic Fatigue Service have told me to do. But its something that I haven't yet done. Amy asking me got me to thinking why I hadn't done it yet. And I realised that it was because I was worried that doing so would make me feel fairly pathetic. What I can manage to do now is so much less than I used to be able to do when I was well. If I see written down what I have done in a day I run the risk of feeling like a big bag of patheticness as I realise how little I can achieve. However writing down what I am doing will help me to actually pace myself well, as I can look back and see where I was doing too much, when I was not resting enough etc. And by charting what I have done will be a good way to see how I am progressing, to know how and when I am getting a bit better. By not writing it down I am missing out on the benefits from doing so. I think I need to start keeping a diary. I may use this blog to do so, or may just stick to the old paper and pen, we'll see!