Work

Who works full time with scleroderma?

[gindy]

I'm guessing a few ppl do, depending on the type of work.

Unfortunately I've been signed off for a few years now as it's impossible to keep to a schedule with my symptoms. I'd love to go back to work, but I doubt it'll happen tbqh.

[Hidden in reply to gindy]

I really hope there are- I work full time and I am struggling with early mornings & a long drive. Luckily work facilitate me working from home but it is getting harder . I'm hoping it's just a phase that might pass but I have a deep pit in my stomach of worry reassurance sought!

[gindy in reply to Hidden]

Hey I can't reassure you that you'll keep this job, but what I can say is we all tend to find ways of coping.

It might be that a different job suits you, it might be that you have to stop work for a while until you get your symptoms under control.

With Raynauds and SSc the illness seems to come in waves or cycles. Mine usually follows the season changes, from summer to winter is particularly bad but from winter to summer it can be just as painful.

There's no magic bullet, but a decent rheumatologist is a necessity. There's loads of ppl on here that'll point I you in the right direction.

Bare in mind that my reality could be totally different to yours though.

Sending you good karma.

Charlie.

[Hidden in reply to gindy]

Thanks, Charlie, I'm really lucky to have an amazing rheumatologist who trained at Bath. I hope this is just part of a cycle last time I saw my doc he said I was the healthiest he's seen me (I started seeing him before SSc developed!) so maybe it's a dip. I think I'd start my own business if I couldn't work. We'd lose our house I'm the main earner. Weight of the world!

[gindy in reply to Hidden]

Yes it's a stressful time when our illness encroaches into our standard of life.

I'm lucky as my partner takes the main amount of the workload and I run the house. But times are tough sometimes, we do just muddle through tho.

I'm seeing my gp tomorrow about my pain meds as they're just not covering the breakthrough pain anymore. Well actually it's constant pain rather than breakthrough. But I'm already on a heavy dose of Oxycodone and increasing it will be a stretch. I'm hoping the doc listens to my plan of action though, I'm the one suffering so hopefully he'll be sympathetic.

Anyway, I really do hope things pick up for you. Stay strong,

Charlie.

[Hidden in reply to gindy]

Good luck tomorrow

[gindy]

Thanks, and you too.

[Bagpuss1972]

I'm currently on long term sick leave since being diagnosed with systemic sclerosis and pulmonary hypertension in December 2015. Still early days with my treatment so not really sure of my prospects of a return to work in any capacity due to the severe mobility limitations I now have.

[Kingfisherblue]

Me just about some days. I find it keeps me going and takes my mind off this horrible illness.The fatigue some days especially first thing in the morning too and the long drive into work. Thankfully I can work from home most days. The days I go in weekly. The rest of the staff thinks it is great having the air con of full and freezing cold is fun. It is terrible for people like us. Especially as I have to be the one who sits directly under the thing.

I will carry on working until I cannot.

[Hidden in reply to Kingfisherblue]

Thanks for your reply kingfisher - I think we are in the same boat!! I tend to have a fleece over my legs under the desk and gloves on my hands if I have short sleeves. The early start and long drive is killing me but I am fine otherwise. So frustrating! How long have you been dealing with it like this?

[Kingfisherblue]

Hi the Bear I have had raynards for a very long time time. systemic sceloderma for around four years now. It is the constant pain at various levels. And fatigue.

[Hobnobbing]

I work full time. I think I was diagnosed round about the same time as you. I'm grateful to be well enough to work but I'm finding it tiring at the minute.m as I'm just back from the summer holidays. My room is like a greenhouse at the minute - I could grow tomatoes in it - which is adding to my fatigue.

[Hidden in reply to Hobnobbing]

Sounds exactly like me, hobnobbing. I work full time but I'm having to work from home at least once a week. This week I've only been in the office Monday tough week.

[cowhide]

I work full time as a dairy farmer, although my husband does all the milking, I do calf rearing and a lot of the office side as well as all sorts of other things. There are certain jobs I just can't do especially in winter as my Raynauds is so bad, I have rather limited dexterity if I am wearing ski gloves! I have to be so careful, I am taking gloves on and off all day which drives me up the wall, trying to balance keeping my hands warm, dry and clean with being able to actually pick things up, tie knots in baler twine etc. Fortunately as we work for ourselves, if I feel an attack coming on I can go back to the farmhouse to warm up although that is not possible if I am half way through a job that can't be stopped like calving a cow (it's warm inside there though!) . My other major problem is digital ulcers and risk of infection, especially as I am now on mycophenolate. I have had some bad calcinosis on my knees in the past which unfortunately are at the same height as a baby calf butting me for milk when I am bottle feeding, I also have to climb over a lot of pen gates and often bash them which is agony.

I do get very tired sometimes but that is probably the relentless early mornings (365 days/yr) and lack of holidays or full days off - animals need tending 365 days/yr. Now I am on mycophenolate I have to be more aware of skin cancer risk - I may be outside all day in summer and even on a partially cloudy day am in the sun a lot. Although the skin on my hands is tightening it does not yet restrict my use of them although I am very clumsy and my grip is nothing like as strong as it used to be.

I'm not sure how much longer I will be able to keep it up but my work is a source of great pleasure for me.