Well we're do I start, I was diagnosed with Scleroderma in March and I'm still trying to get my head round it all!
I'm am/was working full time, my boss has been really good he has never moaned and always paid me when I had my appointment, unfortunately, due to work, appointments and home life, I'm totally exhausted, and haven't managed to make a full week at work.
I've now been asked to leave my employment, as I can't do the job I was employed to do, and have made several mistakes that have cost the company. They are paying until the end of year. I totally agree with them, but I'm now at a total loss. Does this mean I can't work? Will I always be like this? Can claim anything?
I really could with some help or advice please.
Written by
sharon2751
To view profiles and participate in discussions please or .
Have u got an actual diagnosis from your specialist? If so, yes you're entitled to disability that's now called PIP. When your pay stops, as you've not lost your job through any fault of your own, you'll be entitled to benefits pretty much immediately.
If you pay rent, you'll get a housing allowance. But honestly the best ppl to talk to are citizens advice. Make an appointment asap and get a plan made on how to go forward if your working life is over.
Mine is, I'm only 43 but I cannot manage to work anymore. It can feel awful, but rather than dwell on the sad part, think of it as time to get used to your illness and to build a life around it. You may find once you're settled into a routine your body can cope with that you can do something part time's
You have my sincerest wishes that things turn out ok. I've got a feeling you're too strong to let this blip beat you.
Please though, arm yourself with info and advice about your financial options and the help you're entitled to.
Yeah I have been diagnosed by a specialist, I'm in the process of the PIP.
I'm only 42, and really don't want to have to give up work, totally guttered that I have had to give up a job that I love.
Like you say, maybe this is the time to get my head around this disease! and get my life back on track, I am strong, and I will get there.
Many thanks for your reply and advice.
Sending you my best regards
Sharon 😊
Hey, you don't say what you do - I totally relate. My employer is great too but my role enables me to work from home when I need to. The exhaustion/fatigue can vary and doesn't mean you'll necessarily always feel so exhausted. I wrote a big post a while back on the use of d-ribose for muscle fatigue and prioritising sleep too can make a huge difference. I drive 45 mins each way to work and train hard at weightlifting with scleroderma. That's up at 6am and back home at 8.30-9pm each day. Don't lose heart entirely. There may be a better role out there for you - working from home allows me an extra couple of hours asleep which makes loads of difference, as may medication your doctor gives you which can take time to take effect. Don't give up!
I had to give up work 2 years ago when I first got diagnosed with scleroderma, it was quite a shock, I had always enjoyed working.
My fingers are so bad, it would be impractical to try and use a computer and perform office duties. I'm quite an outgoing person and found it quite hard. Sadly my husband passed away a few months ago with a rare stomach cancer, which has totally taken the wind out of my sails. He was so good looking after me. I have had several friends visit me and my daughter is so good coming back when she can.
Is ther anyway you can work from home, my husband worked from home for a while caring for me before he became very ill and then needed care in the home.
I try and keep busy using my iPad (using a dibber) and I go for a short walk everyday weather permitting.
You have to remain positive, the disease can be quite bad and I was in a wheelchair for a year but with positive thinking and physio exercises I have now discarded it for over 6 months. Every few months I go back to work and have lunch with my friends from work, they are always so pleased to see me.
I am going through the exact thing too. I have recently been made redundant last month.
I found the shock of me losing my job has made me really ill. The stress I did not know it was going to happen. I went straight to Citizens Advice.
I am also going through PIP at the moment and hope that I can get it.
I have had Systemic Scleroderma for about four years and Raynards. I find that keeping a positive mind and doing some exercise everyday helps me. I am still able to work at the moment, so I am trying for work. I signed on a the jobseekers yesterday and they know about my illness. I am going to try for office work until I really cannot work. I do not want this illness to wreck everything. I just learn to live with the illness the pain and fatigue. take the tablets to keep me going.
I hope that you get your PIP and go and get advice. Good Luck
I can understand how you must be feeling. I'm 44 and absolutely loved my job as an exec PA (did it for 15 yrs) but have been on long term sickness since being diagnosed with scleroderma and pulmonary hypertension last December. I've lost my mobility so think IHR may be the best option for me. The situation makes me so sad and emotionally upset but I'm now being a full time mum to my 5 year old son and am focussing on that. My OT said in these situations you go through a grieving process as it a significant loss. Stay strong, you're not on your own. Happy to chat anytime x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Struggling with sildenafil
I cant cope right now
Confused a bit 
