Invisible Illness and Getting Caught

I was trawling through the disability blogs this morning. I usually have about 9 or 10 new posts from various sources to read. This morning was about normal except I found a blog I read a blog I didn’t have book marked or in my Google Reader. It was Benefit Scrounging Scum. This lady is bendy in all the wrong ways. She has Ehlers Danlos Syndrome. I must admit I have heard of the illness through Twitter but haven’t really read up on what it does to some one. From what I gather it causes severe Joint pain and causes limbs and joints to pop out of their sockets at any given moment whether it’s convenient or not.

BSC, in this article ruminates on getting shopped to the DWP for benefit fraud. She is worried that because she doesn’t look ill for the entire month and can for all intents and purposes feel and look good for a few days that someone could misconstrue that she is faking it and being exactly what her nom de plume suggests. For anyone with a genuine illness that doesn’t confine you to a wheel chair 24/7, I imagine that this is something that crosses all our minds, especially when rabid dogs like the Daily Mail set about the “Work Shy” on benefits. It all stokes the fires.

For me, as I have posted a few times on this blog, I get very paranoid about being followed by the Government or by some strange organisation who are trying to catch me out for claiming benefits when I am seemingly perfectly well enough to work. I don’t want this to sound like a pity me post, that’s not what I set out to write. I just thought I’d reiterate what I had said before. With all the furore surrounding ESA and it’s introduction over the next few months and how apparently hard it is to get through the Medical, this has amplified my paranoia to such an extent that I hate going out on my own any more. Walking to the local corner shop is a gut twisting always looking behind me exercise. I am only out of the house no more that ten minutes, less if there is no one ahead of me in the shop. Being a biog fella I always end up out of breath and needing an inhaler or two once I get back. It’s not that I am that unfit it’s just that I find it hard to breath when power walking at 30 mph.

There is nothing more that I would like than to go back to work. To make more money than I get on Benefits. I have stuff I want to buy that is just out of my range being on benefits. It’s been that way for nearly three years now and to be quite frank I am seriously pissed off with my body that I don’t think I can actually take much more of it’s pissy moods and general inability to function as a regular human being. It’s maddening to to know that I have all this untapped potential that is screaming to get out but my body and more so my brain letting me down constantly.

Fuck it I have done exactly what I said I* didn’t want to do and made this all about me.

If you are one of the one who suffer with an invisible illness, (and I know this is easier said than done) but don’t let the fuckers get you down. The plain facts of the matter are that if you are claiming benefits and have been granted them on a “permanent” basis then you should have nothing to fear as you have made your case and had your medicals. The only thing you should be worrying about is how to make it through the next few minutes, hours, days. We all know that they aren’t going to make it easy on us in any way shape or form. We just have to stand strong and fight the fight when we let ourselves do that.

Until Next Time…



My New Toy

As I mentioned in my last post, I have recently gotten an E-Reader. This thing has taken over my life. My internet usage is down by about two third as I am to busy reading the latest book.

So far I have read The Hobbit, Deception Point by Dan Brown and I am now halfway through The Running Man by Stephen King. I have read all this is the past week. I don’t think I have been this hungry to read since I was at school. According to my mum I used to read a lot when I was really young and Christmas and Birthdays always bought new books to the house. But I kind of drifted away from reading during the 4th year at junior school. Sitting and thinking about it I know why I drifted away and it’s all my fault.

During Junior school we had reading ages. Right from the first year up to 4th year we had to have a reading book on the go for weekly reading times. The awful moment when you had to go and stand by the teachers desk and read from the book you had. Up until 4th year this wasn’t a problem. But some strange competitive thing over took me in the 4th year and I wanted to get up to the top reading age in as quick a time as possible. I wanted to read real books… ones without pictures accompanying the words. So I lied about reading at home and finishing books before I had actually read them. I hurt no one but myself.

The one book that I put my downfall to was The Secrets Of Nimh. I had that book in my drawer for weeks. I could never get past the first couple of chapters. I was well out of my depth and I knew it. I skipped chapters, Watched the film so I had a rough idea of what had happened. I think the teacher Mr Martin probably knew I was trying to pull a fast one but he never said anything, I was an adept fibber.

After that book did me in I didn’t take much interest in books. It wasn’t until I left school and went to college to study Theatre Arts and English A Levels that I really had to start reading again. My GCSE’s were pretty sparse in the reading front as I was dumb as a box of rocks and was put in lower sets for most classes and regular teaching was put aside for more focus on coursework done as guided individual learning. When I got to college I had to relearn how to read again. It was a struggle and I found I slipped back into my old habits… hence failing A Level English twice and only just passing the Theatre Arts course second time round.

I had no problems reading scripts but my main problem was getting my ideas from my head to paper. It has been said amongst family members that if I had been able to give oral answers to my exams I would have passed with flying colours, but writing them down was always a problem. I have tried on numerous occasions to get “back into” reading but have never had much success. I would read one book and then get all enthused and start another only to have my attention taken away by something else after a few chapters. I never settled into being a book worm again.

But that seems to have changed now with the E-Reader. I have an appetite for reading. My only problem is deciding what to read next.

This is a promo picture of the E-Reader I have. I tried to take my own picture but the results were less that acceptable for publishing.

My New E-Reader

So far I have read easy going stuff, I feel I need to expand and stretch myself. Maybe a raid on a public domain e-book site for some older books might be in order and start reading something with a little more substance. The only question is… When do I tackle The Lord Of The Rings Trilogy? I have never made it past the first book but I need to know how different the books are to the films. So much choice so little time!

In other news… I just took some pictures of the Daffodils growing the Garden that sprung up just in time for St David’s Day. I offer you a couple of the better ones. These images were taken using my iPhone using the Hipstamatic app.

A Daffodil

A different lens and film option

A drooping Daffodil

Click on the pictures for larger versions.

We don’t have that many flowers in our garden.. in fact .. to be honest … these are the only two. But hopefully the tree will blossom into something interesting over the spring and summer.

Until Next Time…

A New Start

I had my first meeting with the new CMHT on the Monday just gone. It wasn’t as bad as I thought it was going to be, I am just glad that I had Mum and Linda there to back me up. I was feeling the effects from the previous nights Seroquel and being up early and not being able to go back to bed to sleep it off led to an iffy first impression with the access team. I tried to answer all of their questions the best I could but my brain just wasn’t connecting that morning. I suppose it’s best that they see me at my worst and for once my body co-operated. They asked all the usual questions you would ask someone in a getting to know you type meeting. What my symptoms were? What do I do throughout the day? What did I think my current state of mind is at the moment?

The Nurse who was leading the meeting was quite nice, I have forgotten his name already, hell I had forgotten it within Ten minutes of him telling me it. He commented that I seemed over medicated. Not tired or withdrawn, but over medicated. I guess for the first time I actually see my general malaise as being over medication and not depression for the most part. To a certain point I do agree with that. It does take me a fucking long time to get my arse in gear if I am awake before noon. My mornings at the moment are completely shot, I just simply cannot function. I have to start getting used to the feeling of being tired and working through it. I can’t simply keep going back to bed until the middle of the afternoon, it’s just lazy. I mentioned to them that my GP had changed my Seroquel to the modified release version and that I thought that was what I thought could be contributing to my general tiredness during the day. I asked on the off chance if they knew of a way that they could change it back to the regular one hit wonder version I was on before I saw my GP. They said that they shouldn’t think it would be a problem to get the Psychiatrist to do a prescription for the regular kind (and they did.)

I was with them for about 30 minutes and I was almost relieved to know I was now back into some kind of Mental Health system, They don’t work the same way that my old CMHT did where you are under a psych permanently. You see them for as long is as needed to get sorted and then you are discharged back to your GP for medication reviews. I am not sure I like this way of working as my GP is very gung ho when it comes to medication. It’s almost as if he is anti medication at times. He wants you on as little as possible, but I would be very wary of him changing to much  mostly because of his wanting to change my medication within 5 minutes of meeting me at our first meeting. But I think I have a long way to go with the psych before anything like that happens. I think they want to reduce my prescription before they get rid of me. I think they were more concerned than I was at the amount of drugs I am on, that viewpoint has changed over this past week but whatever it takes to get me through. My medications are a finely balanced tight rope act. Any changes that are made are usually met with mood swings and depression. I don’t why I am so sensitive to them but any change and you can almost bet a pound to a penny that you will notice the change in me within a few days.

They asked me what sort of services I had up at my old place so I mentioned the drop in place I used to go to for relaxation groups and discussion groups. They said they had something similar here where they do various courses in stuff like photography and practical things. I had mentioned that the Bungalow had been one of the places that allowed me to get out and meet people and not be just confined to the house. They are going to get some info together and let me know on what groups are run around here… the photography one sounds promising. I might have to invest in a better camera for it though.. I don’t think my little one would do much justice to a proper course in photography.

At the end of the meeting they went and had a conflab with the Psych and came back to the waiting room and called me back to the room where we had had the meeting and asked a couple of questions, they went of again and came back 5 minutes later with a prescription for regular Seroquel and an appointment to see the Psych at the start of next month. So we are off and running.

In other news, I got my birthday present two months early this week. I am now an E-Book reader. It’s a nice little reader that does exactly what I want it to do. It is an LCD display so it lights up and is readable in the dark (bedtime.) So far I have read The Hobbit and am half way through Dan Brown’s Deception Point. It has reinvigorated the reader in m e. It’s so easy to use and because it’s just about an inch thick (with the leather cover on it) it doesn’t feel like I am sat there ploughing through a doorstop of a book. It’s deceptive and lulls you into reading more and more. It’s just a little click down one page and you can manage just one more click before you close it up and lay down to sleep. It got me like that on Monday night (the night I got it) and ended up reading another 40 pages of the book.

Well that’s it from me for another night. If you prey meditate or give thoughts out… say a little something for the people of Japan this weekend. They have a long road ahead of them and it’s only getting worse for them at the moment.

Until Next Time…

Yet Another Night

I probably shouldn’t start writing this blog post at almost 11.30 at night, but seeing as I have opened up the WordPress admin page 5 times so far this evening it must mean that I subconsciously have something to say. So let’s find out where this screwy little brain of mine wants to go tonight shall we.
I am hoping that I can get some decent sleep so I can try and break this Seroquel cycle that I seem to be stuck in. I take my pills at 10ish in the evening and then go to be around midnight. I am usually up at around 8ish with the old pain in the back breathing trouble and then within a couple of hours I am back in bed till early afternoon. If it wasn’t for that darn pesky breathing thing I am sure that getting up at 10am would be quite sufficient and would lead to a more productive me who could get on with his day.

Getting on with my day, that’s a little bit of a joke you see. My days consist of sitting at my computer waiting for the next spam comment to turn up on my blog or drop into my email inbox. I know that writing that seems pretty pathetic and that pretty much sums up how I feel about myself most days. The fact that I can’t face going outside and the mere thought of interacting with anyone all but cripples me with anxiety. I am afraid that I am going to have to explain all this to some drone one day and have no words to explain it because I am so socially retarded at this point in time I don’t think I could do it if I tried. Oh yeah I better get over that by Monday lunchtime as I have to explain myself and my illness to the access team at the local CMHT. That should be fun. Now I have to justify why I need medical help on a regular basis and not have them stop my treatment of just have my GP deal with my medication. As much of a nice guy as my GP is I don’t think I trust him to not just stop half my pills cold turkey and leave me to rot in the eventual spiral of despair that would arise from such actions.

That’s it from em I am going to bed to begin yet another sleep cycle that should finish before Noon…well we can hope.

Until Next Time…

It’s About To Begin

This past Thursday I got the letter I had been waiting for from the local CMHT. Or at least I thought I had. On first glance it was all well and good they wanted me to phone up and make an appointment. Good  thought, then I went back over the letter and read it properly (damn my scan reading abilities.)

They wanted me to make an appointment to see “what they could do for me.” The penny then dropped for me that they know nothing about me and have obviously NOT sent for my notes from up north. So my initial fears of not getting seen by anyone properly till Easter is actually coming to fruition.

So I phoned them, they seemed very nice on the phone. I think all CMHT’s train their receptionists to be uber nice and to instil a sense of calm in patients. When i finally got put through to someone to make the appointment, I was put through to the access team. Now I don’t remember what it was really like when I first got referred to the Corby CMHT. Maybe I went through their Access team and didn’t quite realise it, but having to explain myself again after all these years is a daunting prospect. My illness has changed so much of the past 7 years that it is hard to know where to start.

I have my Care Plan from the last psych I saw but it’s a two page brief that doesn’t really say a lot about me and my Bipolar, just how I was on that particular day in that given three month period between appointments. I never think that the care plan that was sent out after each appointment was much use… now they are all I have to support my illness. Scary Eh? I guess I need to sit down and actually think of all the components of my illness and write them down so as I am not sat there umming and arring over each question. I hate making lists though… it makes it all seem so forced and premeditated. But if it helps then that’s what I need to do.

I am still waking up with the really bad lower back ache and am having to pop pain pills the first thing I do before I even have a cigarette or make a coffee. I hate pain and all that comes with it. I don’t have a real clue what’s causing it. I know I alluded to it being linked to my smoking and I will quit and then see if that helps. I know it can’t be my weight as I am still losing with the Byetta (diabetes drug.) I am going to flip the mattress on the bed today to see if that helps any.

*Jump forward a few days, It’s now Wednesday*

I never did get around to flipping the mattress and my sleep has been shot to shit ever since. I didn’t sleep at all last night and I only managed to get three hours this afternoon. I am wiped out, I just feel like sleeping for a week. I know I couldn’t do that but if just for once I could go to bed and not worry about waking up in pain it would be nice.

My mood has been all over the place. Monday I couldn’t do anything for the voices in my head screaming. One part of me felt like going out with Mum and Linda but the head said NO!. I wouldn’t have been able to handle the paranoia that would have gone with it. I haven’t had that much paranoia since I moved down here, so it was a little disconcerting.

This post is so bitty and bobby I should probably scratch it, but I have done that with about ten posts over the past couple of weeks so I am just going to post this sight unseen and pray that it makes sense to some one.

Until Next Time…