My life now on a few pieces of paper!

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My life now on a few pieces of paper!

Postby changeoflife » Wed Aug 19, 2015 8:25 pm

Well.... I've just completed my capability for work questionnaire, reading it back really saddens me, why these forms have had to come about must be because of people taking the p*** to get money from hard earning people when they could and should be out there contributing. What I wouldn't give to once again be waking at 5am to be proud and working, I hate this. I thought this would be a temporary glitch in my life but it's taken over like a viral in my life. I've lost my friends, my confidence, my respect, my earnings, my energy, my future, my everything because of this condition and almost having to lowering myself to grovel and belittle myself by filling out forms, making myself hurt and cry in the process. Hope everyone out in the big world who isn't worthy are enjoying their smug money, I'd like to call it, those that should and could get off their arses to stop so many (like myself) having not only to have to deal with forms like this, but have to remind themselves how sh***y and incompetent they are by writing it all down!
Stand for something or fall for everything!
changeoflife
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Re: My life now on a few pieces of paper!

Postby UnderSiege » Thu Aug 20, 2015 5:44 am

Hi changeoflife.

I know exactly what you mean... and since osteoarthritis became fibro too my support base has actually lessened.
Now, for me it's not always been merely the pain conditions that have been the issue but also a variety of mental issues going back into my childhood... Too smart for my level of education... played up... state takes me away from mother and places me in school for mental kids, I get bullied and abused... after 5 years back home to now estranged parents and a town where I no longer have any links... Father who has been absent for 10 years returns, decides I'm worthless, bullies me and favours 12 year younger brother they had while I was away who I actually dote on...struggle and fail with higher education because my basic education suffered at the hell school so much... fall foul of a bad crowd and bad habits... drink, drugs, homelessness, OA and epilepsy become major issues... had to become carer to 3 relatives when they were old and infirm, did I get help then? no way... struggle for years just to keep afloat, going through a nasty and violent marriage (she put me in hospital) destroy my health and mind sacrificing for the family only to be dumped on time and again and giving up my right to a decent life for their cause and instead having to live in conditions that rabble at Calais would turn their noses up to, all the while getting more and more unwell... and now... Fibromyalgia! Yay! Every blow I take I am still trying to recover from when the next hits and I get knocked a few more rungs down... and the walls are getting close enough now steam up with my breath.
The longer things go on as they are right now the less chance I have of climbing back up and less far back up with it.

I'm constantly reminded of what a horrendous piece of s*** I am for daring to be unwell when other ppl have to work (and have self respect, pride, disposable income, friends and ppl who actually think something of them, partners, kids, a home, a sanctuary, of their own etc) yeah, cos theres no way I'd love to have any of those things right?
Meanwhile the ppl who do that reminding constantly undermine the opinion of medicos (who have actually had a higher education) conveniently forget that it was me who ran this household and stopped it going to hell for years with their hoarding of junk and neglectful ways every time they want to bitch that nothing gets done anymore as I've effectively downed tools... and refuse to apply those standards hypothetically to themselves and maybe see why I currently lack any motivation as there is nothing in my living right now for me.
And they also conveniently forget all their own mistakes and cock ups and the fact that there are a whole load of real a***holes out there who are actually lazy, fraudulent, selfish, inconsiderate swine (if you can commit crimes and run from the police, or spend your time breeding for benefits, or boozing it up or whatever then you can damn well work for the pleasure imo)

Even in my darkest days in the past (and I could tell you things that would shock you... don't worry I'm not that person anymore and I never did crime or anything btw) I could never have imagined the level of suffering that I go through every day now... which could easily be alleviated greatly by a minimum of leeway... after all I don't have an issue with being ill per se, it's bad luck, will happen to a few in every generation... and left to my own devices it's not beyond the realms of possibility that I could be better, stronger, more stable and even do some kind of work in some way no matter how small or limited it is... but as things stand and will continue to unless I take the exit option things will not change and will only decline, there is no escape from here except the streets... and I will not last long in that game now...

And like you, in the meantime I see ppl, long term scroungers, you can tell, in the JC with clothes and stuff that JSA etc could never pay for... with a gf who somehow loves them for their lack of principles and sportswear or whatever...
And the ppl behind the counter or on the other end of the phone ask me what the hell I want?
Ooh, I dunno, how's about whatever that dude has got going cos look at him, he's laughing all the way back to his free house...

Small wonder why every little aspect of being alive right now (except for the cats... cats are inviolable in their awesomeness) just winds me up so much I have actually been going to bed early just because I might otherwise destroy everything around me if I have to remain conscious to it... I'm that depressed and angry and frustrated... and the worst thing is I have to experience myself becoming a monster and know all the time that this angry man is not me or who I was supposed to be... but what can I do? Just let it all go and chill out? I can't do that anymore... I have my back to the abyss and only toeholds left.

So yeah (whether you get my little TL:DR rant there or not) I get entirely where you are coming from. The Fibro (and whatever else) takes pretty much everything from you... and what's left is easy pickings for the rats...
UnderSiege
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Re: My life now on a few pieces of paper!

Postby changeoflife » Thu Aug 20, 2015 10:41 am

Wow! How do you have the patience and strength to write so much. Your life seems so complex. I'm trying really dam hard to fight this dam condition. Going from such an out going funny person to this person I've become is beyond reality for me. Do you have any contact from anyone apart your family? You seem extremely intelligent but terribly hurt and angry, I'm so so angry too, but I'm trying to not let it take a hold of me. I long for my old life back although I know that will never happen. I'm dreading winter already. Last winter I was bed-ridden so this will be a tester for me. Trying to think of new things I could possibly learn, tried guitar a long time ago, if my hands will behave, I might give it another go. Maybe even try learning another language! Time on my hands isn't something I expected to have so soon, and my minds already going crazy after just short of a year.
Stand for something or fall for everything!
changeoflife
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Re: My life now on a few pieces of paper!

Postby UnderSiege » Fri Aug 21, 2015 4:51 am

Hey changeoflife.

Hope today was a good 'un for you.

Y'know I really have no idea where the patience (in all things not just writing) comes from... maybe my Gran watching over me or an angel or me just being unwilling to lay down and die (though spending much of my time in bed or in my room away from everyone is not too far from that compared to what I used to be) Though in my PIP interview last week I had to spill all re depression, suicidal thoughts etc... I get them but don't act on them but surely just the fact I have such thoughts should be an intolerably bad thing requiring immediate attention to rectify. It's like leaving a landmine or IED on a busy road because the bomb squad needs a break or just can't accept it may be an issue... that is where my family are at.

Yeah I'm angry and hurt, it's my biggest weakness these days, not the pain etc... they are at least workable with to some extent, there are options within that... but the anger... well, it doesn't take much to get me wound up to the limit at which point I have to go back to bed or else... and it's just not me, it's not my core nature... I have in the past worked very well as a carer and nurturer and liked that just fine so being very aware of what an a***hole I'm being when riled really hurts even though I can't help it.
Seems theres a set of things that will always wind me up in very quick time (probably because I've been struggling with them for so long)
My mother is a hoarder (think of those documentaries but worse... not just our home but several other houses which could be used better filled up as well as several lock-ups) and I am the only one who has ever tried to make better of it. I have spent since the late 90's cleaning and clearing only to have my greatest efforts undone in a handful of days or even hours. With OA it was bad but now with Fibro doing this is almost impossible so nothing gets done... I can't stand it and my family don't get it... I'm willing to give a mile and want only a half inch in return but never get it.

Now this is going to sound totally daft but one of those things that winds me up is the lack of any rudimentary organisation. Having to do a task is not an issue but finding the tools to do it is... for instance we have no dedicated place for cleaning utensils like most folks would have in their house... so if I need a dustpan and brush I have to look for it through piles of junk, often making more mess doing so and by the time it's found I'm thoroughly wound up and have used up spoons (or beans... whichever theory of energy/pacing you go for) I could ill afford. My family don't see it as being an issue (but then they don't clean) I go to my best friends house, a two bed terrace, where there can be up to seven living any given day, and it is pristine and perfect and despite the crowding is actually very workable and comfy... I guess they play to their strengths and have found a way to make it work. Same thing with my ex girlfriends house... perfect.

I believe life is hard whoever you are but if the homefront is good, all else is a piece of cake... the sanctuary is the cornerstone and foundation upon which all else in life depends... but my family want to live this way and I don't. I can't understand how ppl can desire the stress of jobs or our family business and then willingly have even more stress when back home.

Anyway I've rambled for too long but... seriously consider the guitar or language thing (or anything else) It would do you much good. It'd be tough at times but succeeding in personal quests at this point is amazingly good and can even bring joy to the most hurt heart and light to the foggiest mind... Imagine learning some conversational Spanish (or whatever takes your fancy) then going to Spain and using it a lot... Wow! you've aced right there!... go ahead and do it, you've nothing to lose and something you could well love doing to gain.
I'm actually formulating... mulling over similar plans of my own (German was the language I had in mind. It was the mother tongue of my Gran and nobody else bothered learning it... or any other language. Shame)
Go for it I say, and feel free to be smug when you win through!

Best of luck and take care and let me know how it goes ok.
UnderSiege
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Re: My life now on a few pieces of paper!

Postby changeoflife » Fri Aug 21, 2015 9:26 am

I was gonna start reading again, thought about a book called 'besieged' ;-) seriously though, ever thought about it? Might be good for you to shove it all on a bit of paper or two! Gets me up in the morning anyway reading what the night owls have been masticating over lol to what decade do you belong mr besieged?
Stand for something or fall for everything!
changeoflife
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Re: My life now on a few pieces of paper!

Postby UnderSiege » Fri Aug 21, 2015 5:03 pm

Hi.

Hope you're having a fine day. I don't know about the South coast but Surrey is all shiny in the sun today (and long may it stay that way... to hell with winter!)
I'm off to Cornwall for a week tomorrow. Don't really want to go but mother needs company so I'm having to put my first rheumatologist appointment and blood tests/x rays to get to the bottom of things off for now.
If I get some of that amazing salted fudge I'll be a little happier though...

I'm a 70's baby... '77 to be precise (the year we lost Marc Bolan and the Field Marshal) so I missed the really good music scene but I still got the 80's and 90's growing up along with decent comedy (I'm actually a metal head primarily but do have a thing for other genres from the decades I've been alive as well as 60's stuff. Death metal and disco are quite a contrast though)
Born and raised in Slough (it wasn't as bad as ppl make out in the 80's tbh but I wouldn't live there now) and happily transplanted to (the edge of) Surrey.

I am a night owl, always have been and more so since my adventures in Fibro. It's not good for a daily regime and I'm trying to change it but y'know... pain and insomnia and such will have their way...
At the moment I seem to be out of it by early evening and awake (hungry because I missed dinner) by 3 am... bit of a wreck there but in the nicest way.
I did buy a diary (my 'book of grudges') to note things down in but would you believe, I didn't get around to writing anything after the first few weeks and now I have no idea where it is (bit of a mess here)

I looked up the 'besieged' book. Is it the one about Sarajevo? Interesting. Did you know they managed to keep a club scene going through all that? Anything for morale I guess.
I've always been crazy on reading, often finishing a novel in an afternoon but lately finding the concentration has been difficult. It's taken me weeks to get through Killers Of The King... and Dunkirk I had to give up on... really bums me out.

Well, enjoy the sun (if you have it and enjoy catching rays at all) and have a good one!
UnderSiege
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Re: My life now on a few pieces of paper!

Postby changeoflife » Fri Aug 21, 2015 5:15 pm

Love cornwall, thats where i hope to move in a few years. I miss the waves, used to go boarding until last year. I want to buy a little chocolate box cottage and get some more chickens lol even if cant the wetsuit back on i can watch. People think im a bit nuts but i dont care anymore. Love the ol rock, rammstein is a fav and zep. Used to go to a great pub in weymouth called Finns, good live music. Miss it. You enjoy cornwall, itll do you good. I shall miss your rants lol

Best wishes, jo
Stand for something or fall for everything!
changeoflife
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