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!

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

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.

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.

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.

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.

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.

Bath

Decided a bath was necessary earlier so I went to the bathroom to turn the bath on, washed my hands and then walked out again.
Then I remembered so I went back into the bathroom, opened the window and walked out again.
Ten to fifteen minutes later I think, hmm bath will be ready now, so I head into the bathroom, remove my clothes, brush my hair and then step into the bath.
At this point I realise that there isn’t actually any water in it.
Doh.
As I was already halfway in and that is a bit of a battle anyway I just sat in the bath as it ran.
Mission, eventually, accomplished.

Checklist

I found a copy of the DWP/ATOS score sheet at the ESA help website.
Check it out, the scoring is harsher than on the one I linked to previously but it’s still the same in the essentials.

It’s in three sections – physical, mental and cognitive and the activity test.
I scored myself for each of their sections and came up with this:

1. Walking: 6 points
2. Standing and Sitting: 6 points
3. Bending and kneeling: 0 points
4. Reaching: 9 points
5. Picking up and moving objects: 0 points
6. Manual Dexterity: 6 points
7. Speech: 0 points
8. Hearing: 6 points
9. Vision: 0 points
10: Continence: 6 points
11: Remaining conscious: 6 points

Physical Total: 47

12: Learning or comprehension in the completion of tasks: 0 points
13: Awareness of Hazard: 6 points
14: Memory and Concentration: 6 points
15: Execution of tasks: 6 points
16: Initiating and sustaining personal action: 0 points
17: coping with Change: 6 points
18: Getting about: 0 points
19: coping with social situations: 6 points
20: Propriety of behaviour with other people: 0 points
21: Dealing with other people: 0 points

Mental Total: 30

Total: 77

Yes I did give myself the 6 points for anxiety, the way it’s worded on the actual points thing rather than on the checklist I received makes that valid. It’s still, for me, a side issue but it is an issue.

The section on the activity test was… interesting. It’s stressed that not all these things are asked, that they judge you from the moment you walk in through the front door.
It also has no point value given to it despite the wording from this section being the actual wording on the checklist I received. I’m not sure what to make of that.

One of the things I’d read somewhere on the internet beforehand was that they judged you if you were tidy and clean. I hadn’t given it much weight but there’s a whole section about it on the activity sheet and I don’t remember being asked questions about it. This doesn’t mean the questions weren’t asked of course as my memory is rubbish. Surely people can be ill and still manage be dressed nicely without this impacting on their benefit?

I don’t know why that irks me so much but it does.

Letter the Second

Right, on to the actual letter that was enclosed with the checklist I discussed at length yesterday.

We have decided that you are not entitled to Employment and Support Allowance from 03-Mar-2011.

This is because you have been found capable of work following your recent Work Capability Assessment.

Do you see that date?
That date is a little more than two weeks BEFORE I had my assessment.
That date is also a date I’ve already been paid for as I got money for all of March.
That date also makes receiving the last, heavily delayed as usual, sick note from work irrelevant so all my stressing and desperation of the last few days was for nothing.

It’s entirely possible that that date is a typo and should read 03-May-2011. I’m certainly going to ask about it. If it means they want me to pay them back for March then I’m even more financially fucked than I think I am and I think I’m REALLY fucked.

If you want to know more about this decision or if you think the decision is wrong
Please get in touch with us by phone, or in writing, within one month of the date of this letter…
…You, or someone who has the authority to act on your behalf, can

• ask for an explanation
• ask for a written statement of reasons for our decision
• ask us to look at the decision to see if it can be changed. There may be some facts you think we have overlooked or you may have more information that affects the decision
• appeal against the decision. Please see below for more information

You can do any of the actions listed above, or you can do all of them.

Lots of options. This is good, I particularly like the “facts you think we have overlooked” and “more information that affects the decision” bits.

What happens if you ask us to look at the decision again?
If we can change the decision we will send you a new decision.

If we cannot change the decision, we will send you a letter telling you why. You will have one month from the date of that letter to appeal if you still disagree with the decision.

More good. This means that I can write to them asking for an explanation, a statement of reasons, a copy of my medical record from the examination (which isn’t mentioned but I am entitled to have*) and also asking them to look at the decision again. I don’t have to worry about starting an appeal if/until they have responded to the call for a new decision.

The rest of the letter either tells me to go back to work or lists the other benefits that are available and how to apply for them. As with the checklist it reiterates that I can’t reapply for ESA for six months.

What I think I’m going to do is take the breakdown I did on the previous post, remove the acccusatory bits and the swearing, and turn it into the basis of the letter I will send asking them to look at the decision again.

I shall also talk about it with my doctor. See if there’s anything they can do, perhaps write a letter explaining the joint pain and exhaustion in more detail.
I was planning on changing doctors to one in my actual area – the one I have is a twenty minute bus journey away which can sometimes be hard work – this week but will talk to my current doctor about this first. I think.

As a side note, from what the woman who did the actual examination said it wasn’t her who made the decision. She wrote things down and then sent it to the DWP who used that information to make the decision. I’m trying not to be upset that someone who seemed empathetic and understanding has stabbed me in the back – seems melodramatic but it is how it feels – which is easing some of my anger. Actually today I feel mostly calm, I’ve digested what they’ve said and am working on a plan of action. Tis not time to despair.

Can anyone think of anything else I could/should do?

*I want to see what they’ve actually written, especially for the things that we discussed which don’t fit into any of their comfortable ticky boxes.