Date: 31.12.2009
From: Verity
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Subject: The severity of the disease.
Hi everyone,
Im feeling pretty shitty (excuse my language but its necessary!) today. Had an awful nights sleep because I was in so much pain, its absolutely freezing in our house so am stuck in one room with the fire on. My boyfriends at work so Im just on my own feeling a little sorry for myself.
Ive only recently (within the last couple of years) started to try and accept my disease for what it is. Ive had it for 18 years and have only recently had to come to terms with it. Now, is it just me or did your consultants not tell you about how serious this disease can get? Maybe it was because I was a child but still think I needed to know. I could have slowed down so much damage if I had realised how bad things can get. I was also always told that Ill probably grow out of it which I think is a pretty bad thing to say to a child when youre not definate (I havent grown out of it. It just keeps getting worse). Ive lost pretty much all of my social life, oh sorry Im now feeling sorry for myself! lol
Thnaks for listening (or reading!)
Verity
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Date: 31.12.2009
From: jill
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Subject: Re: The severity of the disease.
Hi Verity im so sad that u r feeling like this, they were so wrong to NOT have told u when u were a child, and also to have said U will grow out of it!!..so damaging.... Verity, U are not alone, know it donest Help u much, but im in a bad way too right now, got to have a spine fusion this coming year, and recently been told I need two shoulder ops ...already had all three b4, but im still getting bad, despite the Methtrexate and Enbrel.......also when U r on your own at night nd in pain, somehow it feels worse...Ive also lost my social life, becos I cant go out, my choice of course, but it Pisses me off and yu r entiteld to day u feel shitty, I feel shitty too, U must say How u feel, we dont judge anyone on here.....that way we can support u as best we can ok.....and vice versa, when u r better....... Verity, I feel sorry for myself alll the time, doesnt mean we have to feel ashamed about tht, who else is goona feel sorry for us? so we r allowed to feel down and depressed and Pissed offf ok..... right now im so angry, angry beco of this pain, and a failure becos I cant fight this friggging shittty disease off.....ive got a massive swelling on top of my back,bottom of my neck.....terrrilbe crushing headaches due to m y cervial spondy(posh word for crap neck and degenerative discs in neck and lumber region....now I have impingement on my shoulders, cant sleep at night and If I do, wake up in pain, with neck pain, shoulder pain, spine pain, and Hip pains.... terrible and today i feel very much crippled, just typing this is so painful, as I have to bend my neck down, hard with a neck brace on..... anyway, i know I cant help u much, but im here for u ok, we r in same boat, not a nice one I know, but I keep on hunting for that gorjus Crusier......the painfree one....... take care ok, and try stay positive...xx
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Date: 31.12.2009
From: valh:-)
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Subject: Re: The severity of the disease.
hi both of u they do not tend to tell us much lol they think it will scare us but if u know u can prepare and make the most of feeling well (((big hug)))) for u both take care and u r not alone
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Date: 31.12.2009
From: Verity
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Subject: Re: The severity of the disease.
Hiya,
I know Im not alone but just can't help feeling it today. Sometimes I can push it aside and pretend its not there but it seems today is not one of those times! One last emotional blowout for 2009!
Ive just had a hydrotherapy appointment in the post for the 12th. I think this with a physio on Tues for my legs is just filling me with absolute dread. Ive spent the last god knows how many years covering my legs up, hiding the problem and just pretending that they don't look odd and wasted. I know it sounds stupid but Im so scared. I desperately don't want to go but know I dont have a choice. Im tired of feeling scared and anxious all the time and I know that the only way to get past this is to accept that this is me and theres nothing I can do about it. Oh God its hard. Everyday is a sodding battle and Im so so tired of it all.
I really admire you Jill as you have to contend with so much. Thanks so much for listening and I really hope you feel a little better soon xx
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Date: 31.12.2009
From: KayJay
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Subject: Re: The severity of the disease.
Verity - don't be afraid or put off with the Hydrotherapy. I was like that but once in the pool it feels great. My left leg is wasted but nobody will make you feel uncofortable as we are all in the same boat, so to speak. It's a lovely warm floaty feeling. It's nothing at all like the public swimming baths and the Physios are really lovely. Enjoy and embrace it. Good Luck ;0) They only allow us 6 sessions in our area on the NHS but I would try to go regular if I could.
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Date: 31.12.2009
From: Angela
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Subject: Re: The severity of the disease.
Verity,Have you thought of getting some wheat bags to keep you warm. You can get the long ones for your shoulders and knees, and bootees for your feet, I bought some out of the Betterware catalogue.
They can feel very comforting and they dont cost much.
Being cold can be depressing in itself, so no wonder you are feeling down.
From what KayJay says the hydrotherapy sounds lovely,and something to look forward to.
Hope you feel a bit better tomorrow.
Take Care
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Date: 31.12.2009
From: bsk
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Subject: Re: The severity of the disease.
hi Verity, sorry to hear you are feeling so miserable today. It can be an upsetting time of year if you are feeling ill or worried. Re: hydroptherapy, I've just completed a course and it was fantastic as I was able to exercise for the first time in 6 months. Also, for my first appointment I was on my own with the physio so didn't have to worry about how I looked (i.e. fatter from steroids!) They have seen it all before I am sure (and the physio was bigger than me lol!) It really was so good that I am committed to carrying on in my local pool. Of course you are apprehensive, that's normal, but the pleasure of stepping into a pool of 35 degrees immediately won me round, hope it does the same for you.
Sally x
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Date: 01.01.2010
From: jill
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Subject: Re: The severity of the disease.
Verity I had hydro after my spine and knee ops, wow was gorjusly warm, they help u do exercises, the only thing was, they give u a session of 8(varies) wish it had been longer....U will be fine, know u r a strong minded lady, and u will love it.... im waiting for my physio on my neck, been ages now and referal still Not arrived...grrrr bliddddy Nhs.....also, they Try and leet only two people in the pool at a time....not lots, honest, and u can wear a towel into the hydro area, to help u feel comfortable, also Verity, tel, the Phsio that is helping u, How u feel about your legs ok, she will understand, and will aloow u to cover up as much as u want b4 entering the pool...like I said, they kept only two in the pool at a time, guess depends how big it is, and beleive u me, I wouldnt be looking at any other people, becos we concentrate on ourselves, no one will be looking at u honest, unless its a goodlooking guy tht fancies U lol xx
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Date: 01.01.2010
From: Verity
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Subject: Re: The severity of the disease.
Hi Guys, thanks ever so much for the support. Its really appreciated :) Im feeling a little better in myself today and have temporarily sorted some financial difficulties weve been having which has taken off a mega load. Was close to spending next week with no heating! Im gonna do the hydro. I think Ill book the day off work so I have no pressure and can do it in my own time without having to rush anywhere afterwards.
One of my main problems is panicking when its not necessary. I get worked up and anxious and find it difficult to snap out of.
Heres to a positive anxiety free 2010!
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Date: 04.01.2010
From: jill
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Subject: Re: The severity of the disease.
Hear Hear Verity....stay strong ok xx
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Date: 07.01.2010
From: Howard
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Subject: Re: The severity of the disease.
The cheapest and qualitative preparations here canadianrx-drugs.com/?ref_id=3327
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Date: 08.01.2010
From: JILL GRRRRR at nitwits!
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Subject: Re: The severity of the disease.
Howard whar r U Advertising? if u arnt a Rhumatologist, then go back to where ya live, cos they r missing their village Idiot!!!
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Date: 11.01.2010
From: Verity
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Subject: Re: The severity of the disease.
Haha I was thinking the same thing! I wasn't sure if it was a joke! lol
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