Fatigue and Vasculitis

Have been having a bad week energy wise. In fact, have hardly had any at all. I've tried to explain to my Managers how I am feeling and how badly it affects me. One them said "I get tired too but when I get home I put on my overalls and paint my sons house and I find I feel all the better for it" Yes, but you are not suffering with the illness I have!!!

I really don't think they believe me to be honest. I'm only doing 3.5 hours per day, which equates of half a day as I'm back to work on a phased return and, according to my Occupation Health Advisor, should be back to full time hours within 8 weeks of stating back. That 8 weeks is up end of next week but I don't feel I would be able to full time at the moment. I need to have another chat to my Managers next week. Frustrating to say the least!!

Taffy x

Hello Taffy, sorry you are having this challenge and you are far from alone in this. It is very hard for some people to comprehend the chronic fatigue that accompanies vasculitis, especially if you look so well (as in my case). There is a theory called the spoon theory, (http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf) this may help them to understand. Have you suggested they read the information on the Vasculitis UK site?

I have not been able to work for over two years, and I still live in hope that one day I will be strong and well enough again to do so. Please do not let anyone 'bully' you into returning full time, only YOU know how you are feeling and what you are capable of.

Best of luck!

Jackie

Hi Taffy, so sorry your experiencing lack of support from your managers.

Maybe your consultant or Gp could write to your Occupational Health Advisor detailing the many signs and symptoms of vasculitis and how this affects you in your day to day activities.

You could also look into the disability discrimination act and your rights.

I wish you all the best and look after yourself.

Jill

I have the same problems at work. I have an excellent Occupational Health report and my vasculitis is treated as serious underlying medical condition and covered by DDA, it states that my medications are very strong and will cause their own issues and that I need a lot of support as a vulnerable worker. I sometimes wonder whether any of the information went in when my managers read it

I was having a really bad day last week and what I got was a snappy ' whats the matter with you' I said I was feeling really poorly that day so was just being quiet. Didnt go down well. Everyone else entitled to have a bad day when they are tired, hungover, hormonal etc but not me apparently!

I was also going to mention the spoon theory on the butyoudontlooksick site. It is excellent. I can also REALLY recommend in the articles tab, 'sick humor' look at the article 'Keepin it real, terminology for the 21st century'. It is absolutely hilarious.

I am having a meeting with my team next week and I am going to read them the spoon theory as an equality and diversity lesson. My deputy said to me recently that he doesnt consider me to be disabled in any way as I am not missing a limb and I dont use a wheelchair-Honestly you couldnt make it up!

Take care

We can send you some leaflets specially prepared for family, friends and work colleagues called "Understanding Vasculitis" there is even a diagram of the body and talks about fatigue. If you want us to post you a few private message us

I must admit I had a little chuckle after reading Taffy's posting! My Occupational health team advised me to resign and get a part time job! I asked that same yeam if they would employ me - the answer was no!

From many of the comments I've read over the years many people say they look 'normal' and others don't understand. The more we can do to enlighten others, the better.

Brian

I have WG and sometimes people just dont understand that I can get v tired especially as I work full time. My managers at work are very understanding at work, but some people dont understand the fatigue aspect of the disease, one even compared it to her diabetes. Would it be possible to have something that I could print out so I could give it to my employers to have on file and that I could show to others so that they can understand. They already have paperwork that tells them about my illness and letters from the hospital that explain that I may need to have treatment at short notice if I have a flare.

I get really tired and am feeling worse than normal at the moment as I had my first infusion of my third rituximab treatment last Wednesday. I have come to work today so will prob be really shattered later on. I sometimes think that people don't believe me, everyone including the Drs always say I look really well. Anyway better do some work.

After being diagnosed with WG in June, I am hoping to start a phased return back to work at the beginning of December.

I have been on Azathioprine for the last 4 weeks and have been experiencing the chronic fatigue as mentioned by so many other vasculitis sufferers. I too wake up feeling like I haven't had any sleep whatsoever even though I have literally slept for England the night before!

Because I am on steroids people have also commented on how well I look & how much better it suits me having "a bit of weight" on my face (which then makes me feel like I looked ill before I was even diagnosed ill LOL).

It's hard to tell people what it's all about when it's a passing pleasantry made. Instead of the usual response to a quick "hi, how are you?" "I'm fine thanks" scenario, I find myself wanting to let them know just exactly what I am going through, as on the outside I look "healthier" than I have ever done (allegedly!).

I am hoping that upon my return to work I won't have to constantly remind people of my situation but I can see once I am back full time, folk may not be quite as understanding and expect me to be how I was. Maybe they expect me to have lost my sense of humour too in the whole process 'cos surely you can't be ill & have a sense of humour???

Only time will tell.......

Hi John and Susan could you send me some of those leaflets as I to am having problems informing my family and friends of the fatigue I feel but, as usual the response is you don't look unwell in fact you look healthier than we have ever seen you, "Yes well that was when I dropped in weight to just above 8 stone from 14", but now I am back to 14 due to steriods and other drugs due to other illnesses, ipso facto I must be well again, in fact I parked my car on a double yellow line and a traffic warden pulled me and when I showed him my disability badges he said "you look to young to be disabled" my response to him was "Why how old do you have to be ?" I really can't figure the ignorance of some people. So I really would appreciate some reading matter for them. You still should have my private email from the photos you asked for, if not message me and I will supply my email addy.

Thanks

Dave Buzzey B

Hi John and Sue, do I just reply yo your message to leave my details?

Arrived yesterday, fab service. Thanks

Hi

I get very tired even after simple tasks but i also start to get the shakes in my hands then it feels like my whole body has it, legs go to jelly and just want to sit, have to find the nearest seat.

Has anyone else had this?

There is a research project taking place at Birmingham University Hospital at the moment, into the reasons for fatigue in patients with ANCA Associated Vasculitis. It is a very thorough piece of research. There will be an article about it in the Vasculitis UK Spring Newsletter which comes out at the beginning of April. I think you will find it very interesting. There are only preliminary results at this stage, but very revealing.

Hi I would be really interested in any information regarding fatigue as I suffer from this due to my Cerebral Vasculitis and I dont sleep so there is no chance of recharging my batteries as my brain damage seems to never allow my brain to switch off? Any advice would be gratefully received. I tried to go back to work for 2 years after my onset of Cerebral Vasculitis but due to fatigue and other resulting problems from the brain damage I couldnt cope and lost my job due to ill health last September:?

Thank you I will

Sarah

Hi John

Do you still have the leaflets available . If so, I would also like one

I have only just read this. It is a perfect explanation of how I feel.

A complete change of diet really helps. Cut out all the bad stuff and go back to normal foods such as vegetables. The modern processed foods are full of toxic chemicals that will only make you feel bad and fatigued. I also swear by a good dose of daily fish oil high in EPA. I buy the brand Veg EPA that is one of the purest omega 3 fish oils high in EPA on the market. EPA is great for the immune system and for feeding the brain cells. The NHS refuses to acknowledge the true benefits of fish oils but the independent research from whole doctors has concluded they are beneficial for depression and the immune system. Definitely helped me in my fight against Churg Strauss Syndrome.