"There's no such word as can't!" ...wanna bet?

It's taken me all afternoon to fill in (what I can) the ESA50 novel form and I could only complete about 20% of it the rest I have to wait to fill in when Jeanine comes over tomorrow.
I find all this form filling in more exhausting than physical activity half the time even when I try and be good to myself by typing my answers and printing them out so Jeanine can do the actual writing on the form for me. My back aches, my fingers ache from typing, I swap from the desktop to the laptop to try and keep the pain down and it mentally drains me because you spend the whole time fighting your built in coping mechanism.
The coping mechanism is the brave face, the 'don't worry about me!' facade, 'yeah, I'm tired but I'm ok' answers, the 'I do it because I have no choice' answers when in reality I haven't eaten or drank all day due to sheer exhaustion or haven't washed my hair for over a week because I didn't have someone to help me and to be perfectly blunt, I look a mess and I stink.
I just can't be that person that says 'I cant do this, this and this' because if I keep saying that I'll stop trying. But you can't be that way when filling out the benefit forms because if you put on your facade and your brave face then they presume you can do all these wonderful and physical things and you get no help.So down comes the facade and the brave face and you're painfully reminded of what exactly you can't do. The list gets longer and longer as you go through the form and the 'Can't's' woefully outnumber the 'Can's' by 20 to 1. Food for thought? More like a whole menu and the dessert list on top, and don't forget the complimentary mint with the bill too...

Weekend update

I had a lovely weekend, got out of the house and enjoyed some sunshine!
We went off to see Alice which was great, I really enjoyed it and then we went for a meal at the Brewers Fayre afterwards which was delicious!
It did wipe me out though and I spent the rest of the Saturday dozing on and off on the sofa all evening, I think I spent more of it asleep than awake.
Putting the clocks forward has messed me up a bit too and I've found myself waking up even earlier than normal.
Sunday was nice too, we went to Nathans town and stopped in a couple of places to have a drink and enjoy the glorious weather we got, it was lovely and sunny and warm enough not to wear a jacket which was great, it really did brighten me up and Charlotte got her first experience of skittles!

The nice weekend has filled me with motivation and today I have been printing and making up lists so I have something to do each day health permitting. I've written a weekly and monthly housework planner and got all my ESA/DLA paperwork back in order as I'd been slacking in that department.

I really wasn't keen on roping Charlotte into the housework but the bottom line is, she needs to. She won't be doing everything, I don't think that's fair at all, but she has agreed to help me with some things and take care of her own bedroom. Nathan does most of it for me and it's so unfair, he works full time as it is and the last thing I want is for him to walk in and start dancing with the hoover, his evenings should be rest time, not doing someone elses housework.
He genuinely doesn't mind and his happy to do it for me, I think it's a way he feels he knows he can help as there is nothing he can do about my pain and fatigue but I mind, I don't like the idea of him doing it.
I'm at the stage now where I know if it will tire me out too much I won't do it, rather than do it anyway and regret it later but I'm filled with frustration that I can't do more than I currently can.
I'll pay Charlotte for her help once my ESA is sorted out and/or my DLA, whichever is first, at the whopping £31 a week I'm currently receiving I can't,.but I have promised to buy her a game for the Wii when it comes out on the 23rd of April.

This week I intend to rest as much as possible as me, Nathan and my best friend June are off to the coast on Saturday. I'll go if it kills me, as much as I love my town I'm yearning to get out, to feel some freedom, to see some new scenery. I don't care if it's cold, I don't care if it's raining, I don't care if I spend the rest of the week in bed because of it, I'm bloody going!!

On the completely un-organised side of thing I've been forgetting to take my amitriptyline. I haven't taken it for 3 nights now which I have no excuses for as I have my pill reminder case right infront of me all the time. I think it's the whole '2 hours before bed' thing that's throwing me, I don't sleep at a set time, I sleep when I feel the need to, and I don't know 2 hours in advance when that will be! So this week I'm trying to be organised with it and take it at a set time roughly 2 hours before my average bedtime and if its 3 hours beforehand or only an hour, sod it, it'll do. Taking the tablet at a rough time is better than not taking it at all.

I still haven't had my form through from the council for my blue badge, it seems that the chap I spoke to has forgotten me so now I'm in limbo again of trying to decide whether to apply now and go through the checks and medical or just wait for my DLA decision and hope I get High Rate Mobility (yeahhhhhhhhhhhhh right)

I managed to get hold of Jeanine about my ESA medical form and she was her usual aloof  'I really haven't got time for this' self and I barely managed to finish a sentence and got told off for trying to be detailed as possible and telling her something 'completely irrelevant', I just hope she's in a better mood when she comes to help me on April 9th, she seemed a completely different person when she helped me with my DLA form.

Been a while..

Some of you may have noticed I've not been updating or about on Facebook and Twiter.

Health took a big dive so the desktop has had a wide berth over the past week or so, I'm writing this from my laptop rather than my desktop where I am firmly plumped on the sofa.

I'm now having chronic neck and back pain and my reactions have slowed down. Tramadol still isn't helping either so I'm currently trying to rummage up the energy to go and see Dr Sam again to try some different pain relief.

In better news I had a visit on Monday from the Welfare Advice lady, Jeanine. She was very nice and helpful and flew through my form for me. I got a letter from her this morning as a confirmation and she has written

Given the information you have put on the form I feel you may qualify for high rate mobilty, although they are getting very tough on awarding this level and low or middle rate care. Again, they have tightened up a lot lately on this component. Once you hear about the decision we can talk further  if needed about appeals etc.

So, I've been warned, as I already knew that this is going to be a tough road and I'm fully expecting to have to appeal at tribunal to get what I feel I am entitled to, but the fact that Jeanine thinks I should qualify is a comforting thought atleast.
Jeanine has also recommended I get Dr Sam to fill in part of my DLA form so I called the surgery today and asked if a charge would be applicable and they said it depends on how much he has to fill in (the more the better as far as I'm concerned!) so I'm going to put a covering letter in with the forms as it's really important he explains HOW my ME/CFS affects me, not just the fact I've got it.
The benefits and work website have a downloadable check sheet where you can fill in how each thing affects you like walking, washing, bathing etc so I'll fill one of those in and pop in it with the form. I've already given him one when I last saw him and he gave me the fluoxetine and the tramadol but some things have worsened so I'll do a more up-to-date one.

Speaking of the Fluoxetine, things are going well with that. I have noticed a difference when I wake up in the morning, I'm far from 'wooo hooo, another day!' but I'm most definitely not 'Oh shit, here we go again' like I was before I started taking them. It's hard to describe really. I'm more...accepting? at the moment. Which is a good thing, but it did bring me crashing down again when I was with Jeanine as all I had to think about was what I couldn't do, which is a lot, when I was filling in the forms with her and the tears flowed quite freely, but Jeanine was armed with tissues and words of encouragment so I feel ok again now but it was really upsetting and emotonally and physically drained me for a few days afterwards and it took me those few days to recover but I'm still not quite up to speed.
Jeanine also offered to help me with all my ESA stuff too when it gets to the point when they decide if I go in the work related group (ha!) or the support group. She has strictly told me NOT to fill in any forms without speaking to her first so I shall gladly follow orders.

Work are being a pain in the arse and not sending me payslips so I've had to ring them ah-gain to ask for them. It's like I can feel her rolling her eyes as soon as I say my name but if they'd send them in the first place I wouldn't have to call, would I? I can't claim ESA without them so I'll hound them as much as possible whether they like it or not, I got paid 3 weeks ago from work, I should have had my wageslip.


And this is enough for my hands to handle, they are aching so I shall end this gigantic post here and try and update daily again to save my hands.

Oh, one more thing. I couldn't make my rheumatologist appointment due to ill health so it's been rescheduled to the 17th of Feb.

A bit more helpful!

Jeanine from the Welfare Advice rang me today and seemed more talkative and we've arranged for her to come to me on a home visit on Febuary 1st.
In the mean time I need to fill in the generics of the form like my name, address, bank details etc and write down other stuff as it happens. How long it takes me to get dressed, get out of bed, etc etc so I'll be making notes from now on and saving them to the laptop in a word file.

I didn't make my Rhuematology appointment this morning thanks to being shown last nights dinner again in the loo. I feel ok now, tummy seems fine, I've eaten a light lunch and dinner and kept it down, so I have no idea what it was, whether it's the fluoxetine kicking in or not I don't know.
I also saw on my appointment letter after I'd cancelled that I need to bring a urine sample with me too and I don't have a bottle so I need to get one from the GP office, lovely.

That's about it really, nothing major apart from the throwing up this morning, dead leg is still with me, still stuck indoors, still staying in my PJ's all day.

Not so helpful!

Council chap came round this morning and took all the ID he needed.

I finally managed to get through to the Welfare Advice line and spoke to a lady who was er,  rather abrubt. In the 10 minute phonecall I don't think I managed to complete a full sentence without her trying to finish it off for me.
She's calling me either tomorrow or Friday to arrange a home visit, but she said in a roundabout way she doesn't think I'll be entitled to a penny as claiming DLA for CFS is nigh on impossible, which was encouraging *sigh*

Other than that a pretty non eventful day. The daily dead leg is getting on my nerves, I shall mention it to the Rheumatologist at my appointment tomorrow.

Oh and some thick twat thought s/he could get into my Gmail account earlier too. So stupid infact they thought by pressing the reset password button they'd automatically get it. They are obviously lacking in the grey matter if they thought it was as simple as that and they could have a good old nosey at my account. Honestly, are some people really that clueless?

Oh, quickly before I go, I googled and found out the problem with my left eye, it does have a name better than 'rugby eye' it is actually called Astigmatism, so there you go.
I also came to the conclusion my sleep fail the other night was most likely down to me forgetting to take my Fluoxetine in the morning and taking it just before bed. Not proven but it does seem logical.
I remember when I was on Seroxat they worked for me better when I took them before bed than taking them in the morning so the time of day does make a difference, although saying that I'm not about to go and test my theory because I don't fancy another night like that night!