Proud but Pissed!

I'm kind of proud of what I've done today, but at the same time I'm all pissed off. I really need to google strategies for coping with anger, but keep forgetting.

I woke up this morning to cramping in my tummy. I wondered what had happened to my period. It started a few days ago, but vanished again after about three hours. The cramps were HURTING me already, so I took a bunch of pain killers and buried my head under a pillow.

I was woken up at about 12:45 by a phone call from my lovely doctor. He had received my urine test results, and indeed I have e coli causing me cystitis, which would explain why I'm in PAIN. He had surmised that it was probably e coli when I saw him on Tuesday, but now that we have proof he can prescribe me the most suited anti biotic. The reason I still have cystitis after the first course of anti biotics a couple of weeks ago is because e coli is becoming resistant to the standard anti biotic being prescribed for it. The anti biotic I actually need (and have a prescription for) is Nitrofurantoin. Never heard of it before. He has also written me a prescription for Mefanamic Acid, since I was complaining of the agony I am in with period pain.

I was happy. In pain, but happy. I dragged myself out of bed, got dressed, did my best to not look like I have manky greasy hair, and drove myself over to the doctors to get the prescription. Picked it up, went to the pharmacist, where I hit the problem. 'It's the pharmacists lunch hour, you can come back in an hour and collect it!'. Actually, I can't. I was struggling to stand up, as she could see, in a lot of pain, already groggy and shouldn't be driving; I'd be worse later on. I asked about prescription delivery; oh sure, yes they do that ... they could deliver it next Wednesday. So I asked if she knew which pharmacy would be open now ... she offered me the one in the centre of town as an idea; one I'd have to walk to .. when I was evidently in no state to be walking. I left the chemist feeling frustrated, sat in the car and cried, and came home. I am basically going to have to settle for being in pain til tomorrow :( By then of course I'll not need the Mefanamic Acid. Doh. Oh well, at least I'll have it for next erm ... menstruation.

Well, the good that came from this is that whilst at the chemist I picked up the number to phone in order to change the name on my medical exemption certificate. So I came home and phoned them to ask how to go about changing my name. So I have written the letter, and included the right documents etc. And since I was in the mood for doing so, I prepared the letter to change my name with the DWP, and to send my driving license back to have them amend their error too. I phoned my solicitor to find out why he wanted to speak to me, but no one was available. I made an appointment with my dentist for next week. Made an appointment with Doctor Niklaus so that I'll have a sick note in time. And phoned HSBC.

My intention in phoning HSBC was to find out how to go about changing my name with them. First of all, there is no specific department that deals with this. Second of all I was put through to India, where the lady I spoke to at first didn't seem to understand the concept of changing my name. She put me on hold to go and ask someone for help, and I got cut off while she was gone. Sooo, I spent ages going through their frustrating phone system to speak to someone again, and whilst SHE was gone seeking help, the first person I'd been speaking to tried to phone back. She tried my mobile first, and then the land line, so since I was on hold on my mobile I answered ... and explained to her that I was on the phone with someone already. I was basically trying to find an address to send all the documents to in order to change my name, because with my health being the way it is at the moment I'm unconvinced of my ability to get to any of the HSBC branches that are around here ... basically, they're all a hike from their nearest car park! Eventually I was put through to a Customer Solutions Department in the UK. The lady I spoke to was lovely; she completely understood the limitations of M.E., and really did try to help. She contacted my nearest HSBC to request a home visit so that I'd be able to do it here, and phoned me later to see if a solution had been reached. The local branch contacted me to say that they can't do that though. What I didn't realise is that they actually have to witness you signing the new signature. So as it stands I will be unable to change my name at the bank until I can physically go in and do it. They should offer a Skype service! The lady did put my mind at ease by telling me that when benefits payments go through they only use your account number, rather than your name, so it shouldn't make a difference.

And now I'm completely wiped out. No chance I could have gone and collected the prescription if I had left it with them.

We have looked again at our decision

Mrs Olana Voljeti
Address 1
Address 2
County
Postcode

We have looked again at our decision.

You made an appeal against a decision about employment and support allowance issued to you on 3.5.11.

We have looked again at the facts and evidence used to make our decision. As a result we have changed that decision. You are still entitled to employment and support allowance.

What happens now

Your appeal will not be sent to an independent tribunal as the decision has been changed in your favour.

Your papers will be passed to Hanley employment and support allowance section to pay any arrears due.

As explained in our previous letter, if you still think the decision is wrong you have the right to appeal. You should normally appeal within one month of the date of the letter.

Yours sincerely,


Squiggle


Mrs J M Adams
Appeals Officer

Wednesday 6th June 2011

Wow, my mind is spinning, so this isn't going to be easy to write. I've had a really really hard few days. Really hard. I'm not quite sure where to start though really, coz my mind's in a completely different place now.

I can't remember Friday, so let's start with Saturday. G picked me up a little after 1pm. I had a bath in the morning, and got kind of bored so listened to my happy songs. (I have a happy folder in my Firefox bookmarks). He's a late riser at weekends, which I can understand since he works hard all week and is exhausted by it, but I find it frustrating using all my spoons in the morning and then zonking out on him in the afternoon. It was good to see him. When he arrived I just wanted to drag him inside and hug him. I'd not seen him for two weeks after all. But I'm a wuss, so I didn't. I can't really remember what we actually did now, to be honest. I do know however that we had an absolute disaster of an evening, which was entirely my fault, and I feel horrible for it. It affected the whole of Sunday. He went out briefly to see one of his neighbours. I started crying. He didn't know this obviously. I managed to compose myself before he got back. He went out to the shop a bit later though, and I started crying again. I was just starting to get a handle on it when he walked back in. He caught me crying. Holy clap on a bike, that's the worst thing psychologically for me, it really is.

As a child I was depressed, but obviously I didn't have any concept of depression, and no one seemed to pick up on it. I spent my childhood and teen years crying myself to sleep probably every night. Occasionally my sister would hear me and come to see what was wrong. If my parents or my step brother found me crying I was .. told not to .. to put it politely. I learnt to cry silently. In fact, pretty often I can be sitting next to you crying and you'd not know it. I still have this mental block. No one can see me crying. It's terrifying. So while he comforted me, it made me worse.

Why was I crying? Well, because I'd failed him. I failed him Saturday night, and then again on Sunday morning, and a little song I wrote for my dad when I was about 11 years old, about how everything I ever do goes wrong, just kept going round and round my head. I felt like that child again.

On a rational note; it could have been PMT causing that. I'm not quite sure whether PMT causes the negative thoughts, or whether it turns them into tears, but occasionally I have emotional PMT. Not every month thankfully.

So, I came away from the weekend feeling that I'll probably never see G again. Oh, he's assured me otherwise, but I feel like I keep pushing and pushing, but I'm not doing it on purpose. It's just that since I've known him things have got steadily worse (and no, I'm not implying that it's his fault at all). The stress from the medical assessors notes has seriously been pushing me to my limit, which has lead me to me being a giant psycho cry baby, and to M.E. crash after crash after crash.

I've spent the last two days in tears. Well, mostly anyway. I don't remember much about Monday, other than I was in tears and banging my head against a wall at one point. Yesterday I started to feel a bit more rational ... my period started and my mind seemed to clear. But then I had a massive crying attack in the evening again. Notably, my period had stopped ... which is odd. I keep thinking I'm having a nervous breakdown again. I do not want one. Obviously. The fear of the fear can cause the fear though.

Well, this morning I woke up feeling melancholy. I lay in bed listening to the rain, which inspired me to write a poem which I've shared on FetLife. I may share some poems on here eventually, now that it won't be scrutinised. I got up and went to the bathroom. Now here's a weird thing, I keep getting emotional, cystitis, and constipation all at the same time. I wonder if they're related. Anyways, I sat on the loo and I decided that I need to force myself to have routine again. Just a simple thing. So here's my resolution .. which I'll probably not stick to ... but anyways:

- lie in bed and try to write a poem or read a little, listen to the birds or rain, or whatever is going on outside

- brush my teeth

- wash my face

- drink half a pint or a pint of water

- do ten sit ups

- take my medication

- make the bed (unless I'm getting back in it)

And later on in the day:

- wash plates as soon as I use them

- don't use a plate if I'm not up to washing it

- put clothes away as soon as removed

It's pretty basic, but it's a start. So, I got dressed, thinking these things through in my head. I want to remain in a tidy, clean house, despite the fact that I am technically not really able to maintain it. If I don't have the spoons to clear up, then I'll not make the mess to start with. I was not feeling positive. I felt as miserable as sin, but I had decided that there was no way in hell I'd let a breakdown happen, and the first step is to force myself to have a routine. Or so I've read anyway.

DWP smell about it. I was loathe to open it, but open it I did. Low and behold; they have reconsidered my medical assessment and allowed me to retain ESA after all, with no tribunal.

This is why my head is in a spin. The thing that has been causing me to stress out beyond my own control, has just been whipped out from beneath me. I mean .. yay, obviously. I hope it's that simple. I hope that means the stress is gone. But you know, what if the damage is already done. I guess we'll have to watch this space won't we.

Do you know how it feels?

A lass named Sarah Warren, who is going through the same things I am, wrote this, and shared it on Facebook today.

Do you know how it feels to be
invisible
ignored
invalid
dismissed and devalued?

Do you know what it's like to be
labelled as lazy
thought of as fraudulent
to be told you're a liar, a faker, a cheat?

Do you know how it feels
to fill in a form
that reminds you of every last thing
you once dreamed, you once hoped
and that forces you to see your
       hope in tatters your
       dreams in shreds your
       life beyond rescue?

Do you know what it's like
when the world looks at you
and then looks away?

Do you know how it feels
       to be
              invisible?


To: The DWP, the NHS, NICE & successive governments
on behalf of people with ME/CFS

http://www.facebook.com/notes/floot-writes/anger-19611/181504528570851

Asking my MP for help.

Dear MP,

I am hoping you can help me.

I moved to Staffordshire in 2002. I was and still am ill with M.E.. I am not sure whether it was 2002 or 2003, but I wrote to you for help regarding the problems with benefits, at the time, and you helped me then. I am hoping you will have it on record somewhere. The short version of my request is that I’m hoping you can write a letter stating that you helped me then, and knew that I had M.E. then.

The slightly longer version is as follows:

I’ve had ups and downs with M.E.. At the beginning of last year for example, I was seeking work. In June I got a bug, I crashed severely, becoming bedbound until mid December. In November my husband decided he wanted a divorce. Early January he decided to stop supporting me, so in February I started claiming ESA. I was called for the medical assessment in April, and failed. I therefore find myself with the daunting task of preparing for a tribunal when I am struggling to walk, let alone feed myself, or prepare for a life on my own. I cannot find a representative for the tribunal, so I am seeking references such as the one I am requesting from yourself.

Upon receiving the medical assessors notes last week I am disgusted to find that the nurse who assessed me has not only lied throughout the form, but has twisted things I said, completely failed to take my back problem into account at all, made assumptions (which I now realise are based upon the training they receive for assessing people with M.E. / CFS), and contradicted herself. This woman should not be assessing people. She has hinted that I am faking my condition, and awarded me zero points on every criteria. She has stated that I was working until five years ago, which is why I am seeking the reference from yourself saying that I was seeking your help well before then.

I could go on, but I will not for now. I am merely seeking such a letter from you, but later on I would be happy to share the assessment and my notes with you if you are at all interested in the welfare reform. Needless to say I am absolutely beside myself over all of this.

Kind regards,

Olana Voljeti.

Wednesday 15th June 2011

Well, I completely screwed up today.

I had a bath this morning. It takes a long time for the bath to run. It makes me sleepy watching it, and waiting. The hot water helped. My legs and arms were soothed, and it was nice to stop feeling pain for a while. But as always I couldn't get myself to relax, so just basically washed, and got out again. It probably takes longer to run my bath than to actually have it.

My plan for the day, basically, was to get a Fathers Day card for my Dad and post it, and to get a thank you card and bottle of wine for Brian. Because of the bottle of wine, I figured Tesco would be the best place, even though it's a bit further than driving in to Rugeley.

I don't really know what I was thinking. As soon as I got out of the car I knew it was a mistake. My legs were shaking with every step, but not in the same pigeon-impersonation way they had been before. I used my stick, until I had a trolley to lean on. I took the lift up to the store. I walked straight past the card aisle, finding myself in the store before realising I'd done so, so I went back and picked up some cards. Making my way to the alcohol area I found I was going past the gluten free section, so I figured I could buy some food whilst there. So I picked up some items there, then picked up some items from the fresh area, and since I was going past the refrigerators I picked up some yogurt ... you get the idea; I did shopping!

By the time I got to the checkout I was leaning my full body weight on the trolley. My legs kept giving way beneath me. I was beside myself with embarrassment. There was no way I could have gone through the self service checkout, which is what I usually do. So I queued behind an elderly guy. He was taking absolutely ages to get through the checkout; I don't remember what it was that he was doing. I had tears running down my cheeks by the time I got to the checkout. I asked the lady if she'd mind packing for me. She asked me what was wrong, I explained that my legs weren't working properly, that I'd not be able to stand to pack the bags. She asked if I was ok, if I wanted any help (other than bag packing). I said no, I'd be ok. So she told me to go sit down while she packed my stuff. But she then called over her supervisor, and people started descending on me from all sides. I had to explain that I have M.E., that my legs and arms were trembling due to fatigue, that I'd be ok, it was just a bad day. I was so embarrassed. Everyone was staring at me.

The most annoying thing is that I forgot to buy paper for the printer. I realised just after unpacking the trolley too .. but there's no way I'd have been able to go and find it and get back in time to pay.

The rest of today has been spent resting. I baked a potato for dinner. Nearly forgot it was in the oven mind you. I'm aching all over, but I'm seeing Tim for acupuncture tomorrow, so hopefully the aches will go away for a while.

Monday 14th June 2011

I wasn't going to write a post today, coz I've done absolutely nothing. Then I realised that that's kind of the point of the blog. Duh!

I woke up just after 7am this morning, having had a nightmare. It was nasty and I couldn't get back to sleep, so I turned my computer on and wrote a blog post about it. I had a cry, and I texted G to tell him I required a hug. He was already up, getting ready for work, and proffered the requested hug via text. I read a couple of pages of The Truth, before going back to sleep. 

I woke up at about 11:45. Listened for signs of life from Bev upstairs, but none emerged until gone 3pm. I spent a little time fiddling around online, read a few more pages of my book, and cuddled the kitten, who is extremely cute, and naughty, and filled with widdle.

I had decided that I should drive home this evening, because I am worried that I'm making Bev crash. She said not though, so we had a lazy day. Neither of us have even got dressed today. Tomorrow I'll go home. I'll need to rest properly, both tonight and tomorrow afternoon. We talked too much this afternoon, so no rest was had. And now I'm exhausted. My legs are working today, but I ache through every limb ... even the little ones like fingers, which probably aren't limbs.