Are you able to work with vasculitis?

[ShortSarah]

Up until being hospitalised and diagnosed with Cerebral Vasculitis I worked as an English teacher in a secondary school. Since everything kicked off, I have been signed off work and deemed "unfit". I was wondering if people have returned to work, if so what sort of work (part time?) and am I destined to find another career?

[vivdunstan Volunteer]

In my case no. I managed to work half-time for just one year, 2003-2004, but that was only possible because of the very flexible nature of the work. And it was before my huge relapse in 2004. Since my diagnosis in 1997 I have been effectively retired, ever since the age of 25. I will never work again.

[ShortSarah in reply to vivdunstan]

Thanks so much for the quick reply and I'm sorry to hear that you can't work. I'm only 29 and have been teaching for 5 years and I fear that I won't be able to go back in the classroom due to my sensory issues - I was always an active person and now I get so worn out doing the smallest of tasks! Sometimes I worry that I'm not doing enough and I long for my "normal" life again - maybe now is the time to try and write a book and learn a language if I can't go back to work (yet)?

[quinnster in reply to ShortSarah]

i lso wondered this ,i was diagnosed with wg in may 11,ive always worked manually,but dont think i could manage if i went back,its quite scary,im 48 and feel like i will never work again

[vivdunstan Volunteer in reply to ShortSarah]

Every case is different, so you may be able to work well again and should not take my situation as too bad a guide. In my case I was severely disabled due to cerebral vasculitis from age 22, and by the time I was finally properly diagnosed aged 25 the disease had become very entrenched and had caused a lot more brain damage and irreversible disabilities as a result.

I considered working part-time from home, and retrained and qualified as a book indexer. But even that became impossible as the disease progressed further, and I was unable to read any more. I am also now knocked out for much of the time (sleeping for up to nearly 18 hours a day, every day) due to the brain damage, and am very confused for much of the rest of the time. I can do productive things, but only for an hour at most, and that's it for me for that day, or even the next two days. My case is really rather bad. Amazingly I managed to finish a part-time history PhD in 2010, but in the spread-out 1-hour chunks way, in no more than 5 hours total a week. In no way was it close to working, and I won't be able to work again.

I'm lucky that my husband works, and we manage ok financially. Although it was extremely difficult when I first fell ill in the mid 1990s and he was still a full-time postgraduate student, ruling us out from many benefits. I fell through a multiple benefits trap: ineligible as a student for Incapacity Benefit, also SDA, and unable to claim Income Support due to Martin's student status. We lived well below the poverty line, but those days are passed.

[ISABEL12]

I was diagnosed with wg in March 2010 and started back in August 2010. I work 30 hours a week, Mon,Tues off Wed, work Thurs and Friday. Some days are harder than others. I've been off 2 weeks just now as i'm having problems with my eye at the moment bu thoping to get back to work soon. Never give up hope xx

[JacquiM Volunteer]

Hi I was diagnosed with WG in April 2011 resulting in kidney damage. I returned to work beginning of Aug 11 working 2 half days per week at first and have gradually built up to 4 full days am I am using my sabbatical leave for the day I don't work.

Like Isabel I find some days easier than others and I don't go in. I am lucky that I have an understanding manager. The sabbatical leave days have nearly fininished so I may have to think about working part-time but as I live alone, I don't think I can afford to do that.

Good luck in whatever decision you make but do take time to make it and consider your health xx

[ShortSarah]

Thanks so much for all the replies - I definitely want to work, I just know that I have to be realistic about what I can do at the moment and as Suzy said think about my priorities - as we all have to.

Also, it's really good advice to take time and go back to work gradually - when I have good days I feel like it's possible, it's those bad days (like yesterday!) when I think that nothing is possible. But your replies have helped and I will hold Isobel's advice of never giving up hope with me.

Thanks again and best wishes to you all x

[John_Mills Volunteer]

Vuk have a member who is lovely, she is a primary school teacher. She does a lot of fundraising for vuk through her school family and friends. She was diagnosed with WG in her late teens and like so many other people was very ill in the early days. She then went onto teachers training college and qualified. She also has good and bad days, she is now in her 30's still teaching but only works 3 days a week now. As everyone has said keep working but listen to what your body is telling you and adjust your working life if you feel you should.

After John was diagnosed with WG he was 57 years old, he carried on working as a full time NHS dentist/orthodontist for another couple of years then cut down to a 4 day week. He took early retirement at the age of 63.

Good Luck with what ever you do and as Isabel has said never give up hope, keep positive and most of all take care of yourself. Susan x

[magcor]

1993 I was diagnosed with cerebral vasculitis, was off work for nine months. I was a nurse, they let me return to work part time with restrictive duties.

As I got stronger and more capable, six months later I went full time and even went on to do my nursing dregree and got promotion in another hospital.

Dec 2001 I had a relapse my world fell apart, this time it hit the brian stem and cerebellum was in hospital over Christmas and New year.

By March my mobility was still not great and I was offerred early retirement with a pension. Very hard to accept this was happening to me I was only 42yrs old.

But it has put my life and my health into perspective.

You know your own body and capabilities, I know you will make the right decision. x x x

[BooBoo39 Volunteer]

Hi . . . I too have cerebral/CNS Vasculitis i originally became ill Oct 2005 to be diagnosed some 15 months later. I was originally off work for several weeks but was still undiagnosed. Ironically as a sports coach i was very fit when i first became ill at the age of 39. I managed to get back to work with the help of HR and welfare. I then managed four and a half years of relative drug free remission and although carrying cognitive scars in the form of brain damage and managing chronic fatigue i regained a level of fitness so good that most people did not know about my condition only those that mattered . But in May of 2011 i became critically ill again. I have not been strong enough or having sufficient immune system to facillitate a return to work yet. But never say never, gradually my strength is again returning and even though i am having to look into ill health retirement options i firmly believe that they are just that options ,as i so want and my employers want to see my return. In my favour they know that i had worked the interim four and a half years with very little sick leave. HR is again behind me and if my sick leave cannot be extended i am also looking into a career break to buy the extra time to wean off the meds. I know that trying to keep some level of fitness is and has been my biggest ally and my consultants agree. Experience tells me as i get stronger i have more better days and provided i dont set unrealistic goals i feel i can virtually achieve anything just not as fast as my pre- CNSV days. Listen to your body try to keep upbeat and GO FOR IT !

At whatever you want to do at whatever pace suits you... Hope this helps and all the best of luck with everything x

[Sarahjh2004]

Hi All

I fell ill with HUVs is Sept 2010. The impact on my body was severe.

Through grit and determination and with help of a great Hr team I managed to get back to work over a year later.

Before I fell ill I as a senior manager responsible for hundreds of staff and a budget of several million pounds. Today I work 3 mornings per week writing papers that aren't ever going to be used. But I really don't mind as the social aspect far outweighs the career. Unless someone takes me to a destination I am housebound and only see my "4 walls".

There was a govt report last year that stated on 20% of people who are long term sick (20 weeks or more) ever get back to work. I think this due to the lack of support. I am currently using "Access to work" where I recieve financial help for my taxis that take me to and from my job.

Like you guys I really want to do as much as I can. Financially the illness has crippled us but those 3 mornings aren't about money.... More about Sanity...

I am due at an HR meeting this Monday to discuss my future. Fingers crossed.......

All I can say is use every available resource. Govt.co.uk have some good advice and the local benefits office will have a dedicated team for disabilty/return to work. Mine were amazing and even offered to come to my meetings with me.

Good Luck

Sarah

[Lucylucciano]

Hi! I was diagnosed in 2000 when i was 17. I had to leave college at the beginning as I was so ill. I returned part time about 6 years ago, got my A levels and then have been at uni in manchester studying primary teaching, im just finishing this year. From my experience it has been really hard when i'm on teaching placments and I don't think i'm well enough to actually do it which is a real shame as its what I want to do. For me its my breathing that holds me back, i get really out of breath and by the end of the day my lungs are actually exhausted! I also have problems with my ears and pain with that too and my voice but its my breathing that stops me doing what I want. Everyone is different as wegeners is different or everyone. I hope to be able to have my own class one day though!

[HisLordship]

Hi everyone,joined the forum today so this is my first first.

Im early 40's and work in the emergency services.

I first became ill in 2002 and have spent lots of time in and out of hospitals,sadly never getting a diagnosis.

My symptoms are high temps, rigors,painful and swollen joints,jar pain,ringing in the ears,shortness of breath and the list goes on.

I was finally diagnosed with large vessel Vascuulitis in mid 2011, I hasten to add that with my current attack I have been off work since march 2011.

I have been through differing treatments ranging from the basic up to chemotherapy. I was told that in twenty percent of cases there was no cure.

Sadly my treatment has not worked and I am now beginning the procedure to be medically retired from my particular service.

[milliewin]

I was diagnosed with Cerebral Vasculitis in 2008 and was lucky to survive but suffered a lot of brain damage. I had worked in a Special Needs School in the Science lab and have a degree and a further degree. I initially had a year off work but then tried to go back for 2 years.

However, I recently had to leave due to health probs a I suffer from overwhelming fatigue and cognitive probs due to the brain damage from the Vasculitis. It became too difficult to work successfully and take care of my homelife as a single parent so with no support there it was my work that I had to give up?

I guess everyones situation is different and a lack of support became a huge issue for me. I now volunteer to keep me going and still socialise as this is important to my mental health state of mind. Good luck in what you decide to do, from my perspective get some support and you may have a better outcome than me?

Best wishes

Sarah

[Zebra]

Hi

I too am a teacher and had to first be off long term sick in 2009 when I was off for about 7 months in total. I then lost my next job as Head of English due to problems with management over my illness. Since having to leave then in March 2010, I have tried a number of varieties of teaching, when well enough. For me, I have found the most compatible currently to be private tuition, some of which I do face to face and some I do via Skype. The Skype stuff is great with older students and means I don't need to worry post-chemo when very immunosuppressed.

I still long to get back to the classroom but am waiting to see what will prove most compatible. My main concern is to get work that is something where I can stay on an even keel rather than yo-yoing back into hospital with acute admissions.

I'm always worse healthwise September to March too so am thinking about that in the academic year and classroom situation.

Like Sarah, I keep volunteering to keep my mind going, but I do really miss my professional life and roles and the company too.

Do feel free to contact me anytime

Z

[molliecatone]

I am returning to work next week, I have vasculitis in my eyes and kidneys.

I work with people with learning disabilities and mental health problems to live as independently as possible.

I am very lucky as the team I work with are very supportive of me as is the company they are arranging for OT to assess me at work so that any help I require is made available. Theu are also understanding of the need for me to have time off for hospital appointments etc

be guided by your doctors and listen to your body as I am lesrning to do

[scotland]

hi ive been diagnosed with wegners and only stoped working when doctors put me in hospital for a week my job is heavy steel fabrication and as long as you know your own limits y should be ok