Tuesday, 18 October 2011

sadness and anger

Today has been a weird day. Well, the last couple of days have been a bit weird. Sleep is coming in fits and starts, the dizzyness is still horrendous and I seem to be feeling sick more often than not, mainly after I've eaten. I am reckoning that the energy exerted to actually eat is wearing me out, because my jaw hurts and my tummy hurts instantly and I need a hot water bottle to alleviate the pain straight away.

I was supposed to be seen by the doctor yesterday to discuss whether I should go back to work (frankly, laughable, as I couldn't get out of bed) but when the time came for him to come round, nothing happened. I phoned the surgery (which costs me money as it's not a free or local number) only to be told they hadn't booked my appointment and no, I couldn't have another one as the doctor was on an emergency. Bloody typical. I let work know as soon as I knew, and asked if I could rebook the appointment only to be told no, I'd have to phone in the morning (today) and wait with everyone else. So I rang this morning, spent about £4 on trying to get through to them, and was told I had to visit the surgery as the doctor wasn't doing home visits. So in the end, I had to walk to the doctors, stumbling and falling over despite being able to hold onto R, and then had to wait for an hour to be seen.

By this point I was tired, in pain, dizzy, sick and I wanted to be at home resting. When I was finally called in, it wasn't the doctor I wanted to see (with my brain fog I couldn't remember if I'd asked to see my usual doctor) - this in itself was fine, nothing wrong with a new doctor as they may be more up to speed with my illness. As it stood, he wasn't. I asked if I could have some pain relief, as paracetamol and aspirin were not helping despite taking them up to 4 times a day, to which he said he wouldn't prescribe me anything stronger as he didn't want me to become addicted to them. I understand this, but the pain is ridiculous.

Then, he mentioned the gym. Just to recap, the doctor I saw last week mentioned that due to my weight, I should consider going to the gym, or swimming. I didn't make too much of a fuss about this last week, because I was hoping with rest I would feel better. This time however, having had to ask R to wash my hair for me because I couldn't bring my hands up to my head (!!!) - I was a bit angry, because he could see I was in pain (unable to take my coat on and off, etc) yet still mentioned going to the gym! R got annoyed, and said "How on earth is she supposed to bang out on a treadmill when she can't even walk down the road?" - I would have probably gone about it in a more subtle way but the sentiment stood. The doctor mentioned perhaps swimming, and to make sure I get fresh air each day. It's easier said than done. He was also very confident that it would get better...

Anyway, he signed me off for two weeks and asked me to come back then. Work seemed okay with it, I have sent them my medical certificate and time sheet to get paid next week, but they seem to suggest I won't get any sick pay? I asked, if I wasn't getting sick pay, would I get SSP, and they said they would find out for me, so fingers crossed.

Other stuff has annoyed me today, but that is for another time.

Soft hugs and stay bright.


Friday, 14 October 2011

the sad one.

Today hasn't been a good day. As I'm sure some of you know all too well, a lot of days are not good ones, but the horrible waves of sadness over me today has been overwhelming. I'm not really a hugely emotional person - I don't cry at a lot of things which others do, and I am reasonably stoic. It's quite funny considering I spent most of my teenage years tearing up at the smallest thing, but maybe since having M.E my priorities have changed.

I just feel utterly useless. I took a short walk to the shop this morning as I needed to get some milk and I just felt horrendously dizzy and sick. I was stumbling over my feet and I heard some people behind me remark that 11am was no time to be drunk. I was too tired and focused on getting home to respond. The kindness of a lady in the shoe shop made me feel better when I bought some slippers - some knitted ones with hearts on!

I'm starting to get worried about the work situation - my medical certificate runs out on Tuesday (when I'm due back in work) and I am worried about the consequences if I am not able to go in (which, in my current state, is completely ridiculous). I am going to see how I am on Sunday night and how I have been over the weekend, and then book a doctors appointment on Monday if I haven't improved.

I can't imagine this will go down too well. I spoke to the other girl who works in the same position as me and the week has been slow, so in some ways that is good - I'm not missing out on anything, but also bad because if there was two of us covering, maybe more would be approachable. I must not think too hard about things like this because it won't solve anything - it's only going to make things worse.

It's nearly 9pm and I'm going to go to bed soon.

Rest well xxx

Thursday, 13 October 2011

a short one.

I think this will have to be short. My arms and shoulders ache from washing my hair the other day and probably typing!

Today hasn't been a good day. As I'm sure a lot of other suffers know all too well, I don't sleep very deeply at night. I have an iPhone and I downloaded the Sleep Cycle app to monitor how I sleep - I think in two weeks I've had one night where I've dipped into deep sleep, and apart from that I've been yo-yoing between awake and asleep. This is what it looks like < And that is the only night I've been asleep properly :(

I had to go and pick up a prescription today for my tranquilisers; a week ago they didn't have enough and I had to go down their personally. The walk takes about five minutes from my house, but we stopped off at R's mum's house for a bit of a rest. Then we went down to the high street and I picked up my script. R needed to get an aerial for the tv, so we had a look in QD and had a drink in the cafe which was quite nice. R cooked tonight, so we popped into the supermarket, but I was so dizzy and sick by this point I needed to sit down. It didn't help that the shop was heaving and the lights were just glaring, but eventually I got up and carried on.

We got home after stopping off at R's mum's house again for lunch, we had a nice soup which made me feel a bit better but I was so full afterwards. I went home and read for a bit and fell asleep for a couple of hours, I was just too exhausted to stay awake.

We had dinner, but I really couldn't manage much. I helped R do the washing up and then went to bed, where I am now. I don't think I'll be up much longer, I'll probably read or something to try and relax. I don't feel necessarily tired; I couldn't do much (like go out or anything) but I just feel drained. I am trying to cheer myself up by looking at Christmas gifts but my eyes are hurting and I just want to...I don't know really. I haven't got to do anything tomorrow, although I will have to at some point get something for lunch.

Anyway, this was a totally pointless entry - nothing much of note to say. I had a chat with my OT yesterday but I'm too exhausted to explain it now.

I hope those who read are better. Stay bright. x

Wednesday, 12 October 2011

About me.

It's quite ironic that one of the labels for this post states that I could include the word scooter. Right now I could really do with one!

This is a little introductory post to something I may or may not keep - I'm a bit rubbish at updating things like blogs (although I never used to be) so it may fall by the wayside if I am unable to come up with something constructive (likely).

I am 26, nearly 27 (something that scares me on a regular basis) and I live in Norfolk. I have had M.E for what feels like a lifetime, at least ten years. For the first year of that I became unwell and had to stop doing much of my education. I slowly regained some energy and for a couple of years was able to work/have a social life, albeit at a bit of a slower pace. In 2006 I got glandular fever, and ever since then I've struggled with work, health, mental health, all sorts of different things. It's been tough and I've hated a lot of that period.

Which brings me to now. Lately, I tried to go to work, as my social security benefit that helped me when I was too sick to work was taken away. As a result, I have relapsed to the point where I am largely bedbound. I am able to complete small tasks but of course, suffer the next day.

I want to try and challenge misconceptions about this illness; to make people more aware of what I am going through, and for people to stop saying "oh, you'll be better in a week". The illness is much misunderstand, even within health professionals, who still see it as a psychological weakness when there is much evidence that it is neurological. If I was to say I had a psychological problem, people would be far more wary than if I was to say I had a brain illness. This has to change. Something needs to be done. It's hard enough that there is no active treatment for people who have this illness, and the last thing we need is people to be judgemental and critical of those who do have it.

I am not sure what exactly I can do, but I want this to change. I do not want people now, and in the future, and especially children who are labelled like I was, as lazy, inconsiderate, stupid or just falsifying illnesses. If there is a small thing I can do, I will try. I am going to think about doing a christmas fair, but I'm really not sure how to go about it. Brain fog persists and I'm a bit rubbish with ideas!

Anyway, that is a little about me. Hopefully I will come back and update you all on how I am doing.