Somebody told me a good analogy only today. Imagine your body has 2 batteries, a normal running battery and a reserve.
Both batteries get recharged overnight when you sleep. If there are special demands, such as vigorous exercise or you have to go short of sleep, the reserve battery cuts in. But people with vasculitis don't have the reserve battery, so when the normal running battery runs out, there's nothing to fall back on. I thought that was good!
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
I am lucky to be retired because I don't know how I would manage to work like you. I had my sister and family visit from NZ and so we went sightseeing for two days. I cooked a big meal on the day they left and spent the next two days in bed because I was burnt out!!
I can totally understand that Binko, it is easy to do too much more than is good for us isn't it. My wish has always been to retire when I'm 55, which I will be in 13 months, but this is now very unlikely to happen in the current economic climate sadly. Hey, maybe I'll will the lottery
xx
I am 59, I have had Vasculitus for 3 years, the flair only died down for a while and has been nagging in the background ever since, I have never got any energy to do anything, I have been on sick for 3 years, I cant see myself ever getting back to work Im too ill half the time, I also suffer from pains in the joints and fibres that connect, it is really painful and it takes me ages to move some mornings, I also have a job to walk, my biggest problem is fatigue and loss of energy I sleep 12 hours a day nearly, and still get tired, I am off to Barts Hospital recommended by my Daughter, the GPs are not very good here and I know I need treatment, I am at presant not getting any, all I need is my batteries back
would you like us to send you some leaflets about vasculitis and fatigue. we have produced them especially for sharing with family and work colleagues. There is a research report due out next month into fatigue and vasculitis by Andrew MacClean from Birmingham University.
Yes please, that would be very useful indeed. Thank you very much x
Yes please me too
Yes please from me too! It's the single biggest problem right now. Affects my life and enjoyment of it significantly. Incidentally, my 'new' Rheumatologist tells me it is quite 'normal'
Hi John, Its your friend in Lincs trying out this site i too would like some copies of the leaflet for Occ Health/ HR thats Human Resourses not the Queen lol and one for one of my new consultants who is adamant that fatigue is not an issue with Vasculitis. I know i mentioned about the connection with CNSV and the affects on the hypothalamus and the reduction in Orexin-A. But as i am not a medic at least an approved leaflet may kick start some belief with said consultant that A)fatigue is an issue and B) i am serious about having an informed view in my personal medical care and progress.
Thanks and hope i have managed to send this question correctly for my first attempt
ps if at a later date it is possible to access the report findings of Andrew MacClean i would be very interested
Do you mean the Understanding Vasculitis leaflet? The report findings will probably be another month. We are going to a meeting and Andrew MacClean will be presenting his findings.
I was interested to read your words as my partner has Vasculitis possibly WG and fatigue is the most dominant and recurrent symptom that and night sweats at a level I have never seen. It is most definitely a symptom.
Please could you send me some leaflets about vasculis & fatigue.
Hi there, please could you e.mail me a copy of these leaflets please.
John,
Please would you send me just one copy of this leaflet about "Vasculitis and Fatigue". Is there a version I can download from the website?
Hi John is there any way I could get a leaflet please?
Hi John, please would you be able to send me a leaflet. I have had Vasculitis for over a year and although don't have hives at present I feel incredibly tired , regards Laura
John_Mills, I am very interested in the information you have regarding vasculitis and fatigue. Please let me know how I may be able to get this information, please...
Hi, I know this is an old post but can you send me one of these leaflets or provide a link? Many thanks.