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…

 

 

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…

Lazy Sunday Afternoon

Well it’s not really lazy.. but it is Sunday and It is the afternoon. I guess in a vague sort of way it could be classed as lazy as I don’t have anything to do and am just sat here staring blankly at the screen. I do have stuff I could do. I have work on my Stumpfinger rebuild I could be doing but I have no motivation to do it.

The end of this week has been stressful, and kind of hard to handle. I missed two lots of morning medication this week and that has sent me on a bit of a downward spiral. Everything has made me testy and an argument with my brother didn’t help matters. I have been sat in my little corner of the dining room all alone for the majority of the weekend. It’s not healthy I know but the isolation is the only thing that stops me from getting so riled up I take it out on everyone else.

I really am starting to hate my life. I am sick and tired of feeling beaten up all the time. The point of life is becoming more and more tenuous. I am no big shot, my childhood dreams have come and gone in a haze of pharmaceutical pill popping. I am no longer able to function for a full day without needing a nap to get me through until bed time. How is that a life. How is that nothing but a bare bones existence.  This move was supposed to be a big change for everyone. So far it’s been a fucking nightmare to live through. I am still paranoid about leaving the house… alone or with people. I am running out of excuses to carry on. Nothing seems to be falling right. It’s all so fucking hard. I really wish there was an easy out, but unfortunately it all includes pain for one person or another. So I am stuck with choosing life… for now.

To make matters worse I still haven’t heard anything from the CMHT yet. Linda pho9ned the Doctor’s surgery last week and was told that the referral letter was only sent out on the 28th of January. So they must be really busy as It’s now the 20th of February and I still haven’t heard a peep from them. If I hear nothing from them in the next few days I will ring the number that is on the Doctors handy leaflet that we were given when we registered with the surgery. To be honest this isn’t filling me with much hope that these people are going top be as helpful as the Corby CMHT were. I guess we will just have to wait and see. If my mood doesn’t pick up i’ll need the crisis team before I see anyone. Such a fucking mess.

In Other distracting news:

I finally got a phone point put into the dining room so I can have the internet router in here and I don’t have to rely on the wireless card that was causing no end of static problems when I played music on the computer. Considering that I spend most of my time here at the computer having decent sounding music and radio is of most importance and the past few weeks with all the static has been most difficult. If anyone else needs a phone point installing I suggest you avoid asking B.T. to do it. Before we moved in the quoted £128 after Christmas and now we have been moved in they quoted £200. I did a quick search on yell.com and that gave me a wealth of choices in the local area. So I phoned a few and the best deal I got was with a local company who did it for £78 inc VAT. Granted they had to postpone by a day but they were good to their word as to when the rescheduled guy would be here, almost to the minute. Drills blaring at 8am aint a barrel of fun, I am sure my neighbours hate me for that. But hey I now have a phone line next to the computer and my speeds have never been faster, here or back in Corby.

I went for an eye test on Wednesday. I thought I only needed new glasses as the ones I had bought late last year were digging into the side of my head and making it very uncomfortable to wear them. We couldn’t find my glasses prescription so I went ahead and had another eye test and my eyes had only changed slightly since I last had them done so I get a new prescription and two new pairs of glasses. Hopefully these will be more comfortable. The main pair I ordered are lightweight and are plenty wide enough so as not to dig in and the second spare pair are the same size and should be OK if anything should go wrong with my main pair. I am not a fashion victim and don’t go for the designer ranges as… well basically… they are either too small (same with clothes) or too expensive (again the same with clothes.) I get the new one next Wednesday. Will maybe if you’re really unlucky I’ll post pics of them when I get them.

That’s it from me for this time.

Until Next Time…

The Mind Revolts

After my whining about feeling empty and nothing, it turns out that my brain took this as a cue to royally screw me over. I woke up at 7.30 this morning to my mobile ringing. The first reaction was to hurl abuse down the phone but then I looked at who was calling at thought

“Maybe it’s important”

All I heard was my niece and nephew playing with Daddy’s phone. Oh joy I was awake.

My head wasn’t playing straight games when I went to bed last night. I was up the latest I had been up for quite a while last night. I didn’t go to bed till 1.30 and I could have stayed up the whole night the way I was feeling. I guess I hate sleep until I am asleep and then it’s the best thing since sliced bananas on my Oats So Simple. My brain had switched into depressive mode and I was fighting the urge to relax and thought myself unworthy of getting rest. It’s something I often used to fight with. Since my sleep counselling I have been getting better but I find I am slipping back to my old ways.

I had no reason to be down. I had had a fairly relaxing evening. Mum and I watched Highlander and laughed at the obvious flying wires that were shown in the final scenes after the big battle. We love seeing little things like that it brightens up an evening seeing shit that the producers missed or were to cheap to fix. Ahh it’s all good fun.

I really don’t know where my head is going to take me over the next few days, probably some where really dark. The voices are at it again and don’t seem to happy at the moment. They seem to think that I need to get off my arse and do something more constructive…. when internal monologue ensues it usually ends up with me asking

“…Like What”

“Jump off a fucking bridge, we don’t care.. you’re fucking useless as you are at the moment.”

So you see, it’s all getting a bit crowded for me at the moment and whilst I am not actively suicidal I am getting the thoughts.

I am still waiting to be referred to the local CMHT. I would have thought I would have had a letter or something by now. It’s going to be Easter at this rate before my notes and paperwork gets moved down here. I really don’t want to see my GP about mental stuff as I fear he may try and mess with the medication, something I am not convinced a regular GP is able to do without any form of fucking things right up.I just want someone to talk to who knows what is going on and can make changes as needed. Nothing has really changed in my medication as of yet. We haven’t transferred over to the modified release Seroquel yet as we are trying to use up what we have left over from the last prescriptions we were given in Corby.

I am back from cooking and eating dinner. Come back to turn Planet Rock on and what starts playing after 5 minutes…. Hurt by Johnny Cash… now I feel fucking wonderful nothing like a pick me up. I should have turned it off because that track always puts me deeper in my head quicker than a bottle of Jack on an empty stomach. It’s over now, the song is passed and has been replaced by numerous other songs that fleet past my head and take my mind of it’s lonely misery for a while.

I hope that this mood doesn’t last too long as I really can’t be bothered with dealing with it all. It’s as anyone who has depression knows, a pain in the arse. I know that may seem like a pretty redundant thing to say but i can’t find any other way of putting it. A long protracted battle with my mind is not something this family could deal with right now. Linda is ill with what we think is a rogue strain of Flu that the flu shot we all got last October has missed and by the looks of things mum is coming down with it too. With Mums COPD she doesn’t need anything that could possibly settle on her chest and make things worse. It would just be my luck to come down with something too. I am quite possibly the worlds worst cold and flu sufferer. I try and struggle through things and then get all moany when I can’t do things. It’s all fun and games until someone gets hurt.

That’s it from me for now. Keep all the depressed people in your thoughts tonight people they are struggling and quite possibly have no where to turn and that’s just a cold lonely hole to be in.

Until Next Time…

Post 99

This the magic 99th post on this blog. I have wittered on left, right and centre about my mental health and the state of the world (both equally fucked up I might add.) I don’t have anything earth shatteringly important to write. I am just waiting for the newly introduced and recently increased dose of Quetiapine to kick in some so I can sleep and not have to take a Zopiclone at the same time because god knows I am zombie like enough during the day without adding any more shit to the mix.

So, yeah. I saw my nice Pdoc last Wednesday, It was a major effort to get out of the house but I did it because I don’t want to be stuck here forever. I explained to him that the screaming voices had pretty much calmed down for the most part but I do still get the odd episode which is most disconcerting. I then went on to tell him about the world and it’s mother being out to get me. I told him how I had retreated from the on-line world I used to love so much. I now just feel like it’s another way for the MAN to spy on me. I have put out innocuous teasers like the odd video from You Tube on Facebook and I tweeted my entry in @kazcita very special #cockoff contest that runs for the duration of The X Factor. Basically she chooses two different celebs on a Saturday Lunchtime and then you tweet back your vote for the biggest Cock of the pair and the one with the most votes goes through to the next round.

I am sat here just going back through this post correcting the twenty or so supposed spelling mistakes with the Firefox dictionary tool and it really did occur to me that I am stupid in thinking that anything I do will stop people from finding me out. I doomed anyway I turn. This blog is hardly anonymous and is ranked up there when you Google my name you can find me any number of ways. I still post here just so anyone who is interested knows I am still alive and am not curled up in the foetal position under the table in the kitchen hiding from the little green men that are coming to get me.

I should be proud of myself I ran from my front door to the end of the street to the post box today unaccompanied. I was positive that all the cars parked were full of people watching me and when one guy pulled into the street and parked right in front of the postbox as I was posting my letters was a Government inspector come to catch me out for something. “Big Brother IS Watching”

On that rather sinister note I leave you as it’s now 3am and I really must try and get some sleep so I can feel crappy tomorrow… I really am enjoying life at the moment…. honestly

Until Next Time…

The Big ‘Orra

It had to hit eventually, the thing I probably hate most about being a blogger. I ran out of shit to talk about and I got myself all worked up and when I thought I had something to write I couldn’t get the words out. Writers Block I suppose you’d call it. I am sat here now at nearly 2am on Monday morning just sitting here and blurbing out whatever comes to mind… Nothing new there then.

I have been mostly depressed for the past few weeks. I have been sleeping a lot, staying up late talking to friends on Instant Messenger services, drinking more coffee than is probably good for me and generally NOT taking care of myself. I have mentally let myself go, and the results aint pretty. The rabid voices I was hearing daily have no regressed back to every other day. I have given up on contacting my CMHT because they basically said last time there was very little they could do for me and just to take two weeks worth of Lorazapam. It didn’t help much seeing as I was taking extra Lorazapam for about a month before hand. I see my Pdoc again on the 18th (I think) and I will bring it up then and see what he says. I feel something has to be done or else what’s the point in taking drugs that aren’t doing the full job. Now, don’t get me wrong… I take the pills because for the most part they work, they just aren’t doing the full job… a change needs to be made. I would hate to think how bad I would be without the drugs. I know my family would end up abandoning me.

I haven’t been to my relaxation group for a couple of weeks… one week because I hadn’t slept for 36 hours and was afraid I wouldn’t make it through the hour long session without going comatose and last week it was cancelled due to a birthday. I missed it and have been listening to the music the facilitator uses during each meeting.

Here is a little acting lesson for you. Way back at the beginning of the 20th century there was this Russian dude called Stanislavsky who thought that the then modern staged theatre very stayed and blocky so he developed a set of excersizes that would aid an actor reach a more truthful portrayal of a character. Most people now now this as THE METHOD, as in Method Acting like Robert De Niro and Al Pacino. One of the most famous excersizes that came from the Method is called Emotional Memory. EM is where you take a thought which gave you a certain feeling and recall that moment and thus that feeling when portraying it in character. I hated doing this when I was an actor because it invariably wipes you out emotionally for ages after and I found it hard to break character anyway so having all this added emotional bullshit going on was a pain in the arse.

This explanation is just to tell you that the music that is played during the relaxation group meeting has become so associated with relaxing for me that usually all it takes is 5 or 10 minute listening to that and the edge has been taken off what ever stress is bugging me, that in and of itself has made sitting through the hour long navel gazing groups worthwhile. I say navel gazing, I don’t mean that as a bad thing. I really enjoy the groups but it does feel a little self indulgent that I get to take that time out each week and be selfish and just relax.

On that last note of old twaddle I will leave you with these two rather funny videos starring Punt and Dennis.

World Of Wine Part 1

World Of Wine Part 2

Until Next Time…