Update-ish

I’ve been remarkably quiet. Mostly this is because I’ve been trying to put more of what energy I have into doing things IRL so I’ve been neglecting my internet presence: massively reduced tweeting, no LJ posts, not much ebay activity etc, facebook alone remains unaffected.

I have been feeling much more myself. I still get a lot of pain and most of the physical symptoms but there’s been a lot less Brain Fog recently which has meant I’ve felt more able to do things. Things that aren’t just being at either my house or F or S’s houses, it’s been exciting.

It does, however, mean that I’ve sort of fallen into the old pattern of doing too much and then feeling simply awful afterwards.
The gentle pacing of household chores has more or less been abandoned in favour of having fun: who wants to load the dishwasher when you could sit in the beer garden for an hour or two with lovely friends, the dishwasher can wait til tomorrow. Except that tomorrow I’m recovering from the beer garden trip so it doesn’t get done. Which is no good as it then becomes just one more thing that D has to do for me.

The upswing in this is that I’m much happier than I have been for a while but I’m struggling in most other ways.

My sleeping pattern has completely disintegrated as well. Lots of bouts of insomnia: there are few things more annoying than being exhausted and awake.

I had been feeling well enough to think about trying to go back to work for one 5 hour shift a week but after a recent flare and also thinking about just how physical my job actually is I’m now unsure. Which sucks as I miss it.

I’m trying to work out a way to balance everything but I appear to be generally rubbish at pacing.

Ah, yes, and I still haven’t heard back from the DWP after responding to their capability for work decision. Leaves me feeling like I’m in limbo in a lot of ways.

Will try update here more often, it is here so I can have a record of what helps and what doesn’t after all and I do need that at the moment!

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Another Link

More for myself than others but also so you all know I’m still kicking about… just fluctuating between fairly well and therefore too busy to post and way too much brain fog for coherency.

Coping with the “You Look Well” comments

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Filler Post

Theres been rather a lot going on around here recently.

Some of it I will, eventually, share but for the moment i don’t have it in me to create coherent posts so here are a few links:

1. Bit more about Fibro and Vit D Insufficiency

2. The Gorilla in Your House, an excellent article on dealing with the massive changes chronic illness brings to you.

3. Helping a Friend With ME an excellent video explaining what you can (and can’t) do to help.

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International ME/CFS and FM Awareness Day.

Which is today. Somehow, even though I saw people posting about it all over facebook and twitter I still thought it was in the future time that was not today.

Anything that I could say has already been said in other places and although i’m pretty cheerful today, brain is not my strong point so I’m going to link you to other people’s words.

First up a brief explanation of what FM is.

Secondly Cranky Fibro Girl has a bunch of useful links etc. The letter, which I’ve come across in many places, has so many pertinent points it’s worth reading twice. Or three times.

Up next we have Map of ME/CFS and FM sufferers. Look at that. There are that many people suffering. Yes I’m on there.

And finally, some M.E myth busting.

You may now go back to your usual doings.

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Vitamin D

I had a little poke around ont he internet about the Vitamin D insufficiency and came across this, which basically says that low Vit d can cause muscle pain and weakness, that 25% of people with FM/CFS/ME have it and that using a Vit D supplement can help lower pain levels.

This, it brings hope and joy. Woo.

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A Trip to the Doctors

Prior to the doctors I popped into the local CAB and they said they would help me put my case together, fill forms etc but that we should wait until the paperwork I requested yesterday had arrived before having a proper meeting about it. Which is good. Cue relief.

Trip to the doctors was informative but not necessarily helpful in the way I wanted it to be.

They don’t want to put me on steroids – which, to be fair, in a lot of ways I don’t really want either – so I just need to keep at the physio, try not to take too many painkillers (which is often easier said than done) and actually remember to sort out CBT for pain management. People of the internet remind me of that.

He then ordered some more of the usual blood tests (anaemia, thyroid and kidney functions) in case the recent blacking out business was caused by that but said that it was probably just a combination of all the Fibro things happening at once.

Then he said that he couldn’t give me a sick note for work as the Job Center had informed him that I’d passed the capability for work assesment. He said he really wanted to give me the sick note but legally couldn’t. He then said that if I was appealing it he ought to then get a letter through saying he could start again and that once I was appealing he would write me a letter which detailed all my symptoms and why they meant I couldn’t work.

This left me kinda shaken as now I’m even less sure than usual about what to do about work. I haven’t spoken to them about it yet but I’ll either pop in tomorrow or call them on Thursday. I haven’t got the energy to do it now though it would be nice to have got letting them know out of the way.

Actually I got a bit teary as for some stupid reason I hadn’t expected it. The doctor was lovely though and kept repeating that he’d give me one if he could.

When I got home I had a letter from the Rheumatologist which said:

Diagnoses:

  • 1. Fibromyalgia
  • 2. Vitamin D Insufficiency
  • Ms H-B’s Vitamin D level showed Vitamin D insufficiency. Her 25OH Vitamin D level was 25nmol/l normal range 50-140. She need Vitamin D supplementation. She should have 800IU of Vitamin D a day. Please prescribe a preparation such as Adcal-D3 1 tablet twice a day for six months. She should have her vitamin D levels repeated after six months of treatment.

    There was more but it got even more technical after that (and I don’t really understand half of the above) and this is the most relevant bit.
    As the doctor didn’t mention this or prescribe anything I think we can assume that their copy of the letter was arriving in this afternoons post. Stoopid timing!

    So when I’m in for my blood test tomorrow I’ll wave my letter at the nurse and see if they’ll do the prescription without booking another appointment.
    If not I’ll book an appointment.

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    Setting the Ball Rolling

    Despite feeling pretty darn awful as a result of the stress of the last few days I managed to start the process for changing the decision today.

    What I have done so far is called and arranged for them to send me the written statement of their decision, a copy of their notes from the evaluation and a copy of my questionnaire as well as verified that by contacting them to get more information it extends the timeline:

    If you asked for a written statement of reasons, we will extend the one-month time limit as follows:

    • If the office sent you the statement within the time limit, we will extend the time limit by 14 days.
    • If the office sent you the statement after the time limit, we will extend the time limit by 14 days from the date on the statement

    This was actually information I already had but had clearly skimmed over.
    Thank you F for suggesting I check this (even if I had no idea what you meant initially due to being stoopid).

    I’ve also booked a doctors appointment for tomorrow. I needed to do this anyway to talk about pain, the recent black outs and physio but now I need to talk to them about this as well.

    I’m also going to go Citizen’s Advice tomorrow and talk to someone there about it all.

    So yes, that is step one done.

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