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jaxsbodhi

Needing support.

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Hi, my name's jaxs. I'm new here, but believe I came across this forum many moons ago.

I was diagnosed with systemic scleroderma in 2007. It's been a struggle to get to where I am and I need some support. I'm finding life very difficult everyday as I live with so many illness, but it's getting too much for me now.

I have been diagnosed with many other things since:

RA.
GERD.
Raynaud's.
Sjogren's Syndrome.
Celiac Disease.
Esophagus and sometimes reflux.

I am suffering that much I don't know who or where to turn,  as I feel no one is listening or understands and I'm at my wits end with worry, which you guys will know makes us feel worse.

 

If there is a tiny drop in temperature I get very fatigued and my fingers and feet turn deathly white as the blood returns. My hands are now turning black; its like I'm defrosting and my knuckles are very painful and crack as if ice is breaking; they become very numb and painful. I haven't experienced ulcers as I'm lucky in that sense,  but an attack of Raynaud's can leave me very fatigued and if I don't sleep I can't function.

I vomit on a daily basis and can't keep much food down any more, although I'm not losing weight it's more of an annoyance. I have one meal a day if I'm lucky. Some days I can't get out of bed because I'm in that much joint pain and fatigued.

 

I have been seeing the doctor at the Freeman Hospital in Newcastle and I even think at times she doesn't understand what it's like being me as all she does is take notes, offers me pills and sends me on my way. I only ever go to my doctors if I'm desperate and that's not very often.

I'm also a carer for my son who has alopecia and suffers depression and major anxieties he doesn't leave the house at all unless he's with another person. I'm his main carer, he's 22.

My partner left me after 10 years after having an affair, as my illness effected us in many ways. I don't socialise anymore, as I can't make plans as I never know if I'm going to be well enough. I don't have friends any more because it's become a hassle as I'm fatigued and while they want to dance and jump around I find my nights out have become sitting (painfully) in the corner trying to stay alert and awake. My life has become a nightmare!

I have been on sickness benefits since becoming ill, as at times I feel drained, out of breath, in pain and can't do daily easy day tasks; even attempting to vacuum is a killer.

 

I have recently been assessed by the Dept. of Works and Pensions (DWP) and they deemed me fit for work. I won my appeal, but it's made me very ill with stress (I'm not a nervous person) but was advised from welfare rights to claim income support as I'm a carer and the DWP would leave me alone, but it doesn't take my illness away (they didn't know what scleroderma was) so I have less money and my choice is to keep warm or buy food. I've fallen behind with a few bills but that's not a worry as I have now claimed carers allowance.

I wouldn't say I was a weak person and anyone one who knows me knows I never complain, I get on with it. I brought up five children alone and worked supporting deaf women in domestic violence. I'm not wanting sympathy because I know there are people worse off than myself. I speak to no one except my daughter whom I see every day, but she doesn't know my real worries.

 

I'm so depressed and really finding it hard to stay here. What have I got to stay here for no one understands how difficult my life is on a daily basis and why do I need to keep explaining to people how ill I feel? I'm getting worse and not better.

 

I feel so annoyed at the DWP to be called for and put up there to explain my existence and not to be believed about this illness I didn't choose to have.

Thank you for reading and I apologise for the long message; I just need to get it off my chest before I go loopy. :sad:

"I have scleroderma ,scleroderma doesn't have me". :happy:

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Hi Jaxs,

 

Welcome back to these Forums!

 

I'm sorry to hear that you've been having such unpleasant symptoms and are suffering with different autoimmune diseases, all of which come with their own problems.

 

I do understand how difficult it is to cope with even simple day to day activities, if you're feeling so unwell and it's a small wonder that you are feeling very depressed and as if you're unable to cope. We do have some advice and help on our Emotional Adjustment  pages, which I hope you'll find useful. We also have medical pages on coping with Raynaud's, Rheumatoid Arthritis, GERD, Sjogren's and Celiac Disease, which may give you some ideas to help you cope a little better.

 

I would also recommend that if possible, you consult a scleroderma expert; as you've observed in your post, unfortunately the average rheumatologist/doctor has very little experience of scleroderma and is not really aware of all it's little idiosyncrasies.

 

Please note that apart from a now out of date first aid certificate and a fondness for telling my medical team how to do their job, I have no medical training, so can't really advise you on the best course of action for you. However, as you are feeling so unhappy I would suggest that you do go back to your doctor (even though you may feel that this is a waste of time). Perhaps he could refer you to a counsellor for more specialised help, as I think that it's possible that your feelings of depression could get worse, if you don't seek professional help. Unfortunately, the average person hasn't even heard of scleroderma and doesn't understand how debilitating the symptoms can be; even good friends can't really understand such a complex disease, especially as often there's not much in the way of outward signs.

 

Now that you've found us again, please do keep posting and at least we can offer you support on the Forums.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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