I am looking to find others with Wegeners Granulamatosis who are currently working as I am keen to understand what support is out there for someone desperately trying to hold down a full time highly stressful shift work job (in Services) whilst battling the fatigue and headaches that are common to this WG.
If anyone has any suggestions for me or would like to get in touch I would be grateful. Kind regards
Hello I am not working now but did work with ANCA vasculitis for around 2 and half years during the process while I was undiagnosed and early into the diagnosis.I found it difficult and originally cut my work hours to make it more manageable then got an easier job and eventually gave up just as I was diagnosed I think if I had got treatment earlier I would probably be still working.What I found helped was minimizing any work outside work so I had a cleaner and a gardener whilst I was working full time I also batch cooked on my day off and had supermarket delivery.I think the most important thing is getting proper treatment as that will give you the best quality of life and enable work to be more manageable.If you aren't feeling like treatment is helping enough tell your doctors.
I was lucky my employers were very understanding and helpful I hope yours are too good luck.Jane
Hi M25M I have had Wegeners for 4.5 years I have been med free since last Aug I’m lucky I can manage to work 54hrs a week as a hgv driver my work supports me well with paid time off for all appointments but I still have the odd bad day when it’s a struggle I had a whole year off at the start
Best wishes Russell
Hi M25M I understand what your saying, I was diagnosed with Wegeners in December, I train Senior Managers in Safety Critical techniques and like you it’s stressful, obviously I haven’t done any Face to Face training since Feb but I did so at the height of my illness. I ran a 2-Day course away from home, I was wobbly as hell but I did it! I felt better for it too, like I had achieved something. Since then I have worked from home. Look one thing I have learnt is we are all in different ships, with different Captains, with different currents on a huge sea and sometimes we have to change the way we get into our port, but we do because we have to be positive. Remember tiny steps, little compromises.........Forward, always forward, I have had setbacks that on the day hit me hard but got up the following day and fought back. You can do this!
I have GPA / WG as well and work full time. Fatigue is also my biggest problem.
I have a few suggestions:
(1) Have you formally declared your GPA to your employer I.e. told HR and / or your manager that you have it. If so, your employer is expected to make “reasonable adjustments” for your condition under the Equality Act. Make sure you are aware of your employment rights and if you are a member of a union, speak to your union rep.
What does this mean in practice?
Have a think about some things that your employer could do to help you.
For example:
- if you feel particularly bad in the mornings, you could ask to start later.
- If you always feel terrible the day after an infusion if you take Rituximab or cyclophosphamide, you could take a day off afterwards
- You could ask to work from home, or have the flexibility to work from home if you are having a bad day
How do I tell if my adjustments are “reasonable”? Whether the request is reasonable or not is going to depend on your line of work, how big the company is and its resources, and the effect making the change would have on your difficulties. If you work in a factory on the production line, for example, it would not be reasonable to ask to work from home.
More details: gov.uk/reasonable-adjustmen...
(2) You may be eligible for financial support via Personal Independent Payment (PIP). You can receive PIP if you are working and have a long term health condition that impacts your daily life or getting around. However, please do be aware that getting assessed for PIP can be quite a long and stressful process. I suggest you speak to someone experienced with it e.g. Citizen’s Advice before claiming.
More details: gov.uk/pip
(3) Some other things that I found have helped me (mainly lessons from trial and error!)
- I really struggle in the mornings so I make sure everything is ready the evening before.
- My rheumatologist suggested taking magnesium, vitamin D and iron (check with your doctor / pharmacist to see if this would be suitable for you)
- Try to keep eating a balanced diet. When I am having a flare, I eat a lot of convenience food as I am too knackered to cook. This actually makes me feel worse, because I’m not getting the vitamins and minerals I should. If you can, get someone else to help you prepare meals (ideally something with at least 2 of your 5 a day), pick “healthier” ready meals or ideally when you are feeling better pre-prepare some and keep them in the freezer / fridge for when you have a bad day.
- As someone else said, you only have so much energy and if you are using at work, the household tasks are going to slip a bit. If you can, getting someone to help with this would make a massive difference (whether paid or family / a friend).
- Try not to nap, napping is not your friend, and will make it harder to sleep later.
- This might seem perverse but exercise can sometimes help. By exercise I mean gentle walking, not sprinting or anything high impact. Your doctor can give you tailored advice (I suggest asking your consultant, rather than GP).
- Make sure you keep your rheumatology team in the loop.
Finally, don’t be too hard on yourself! GPA / WG is always a challenge, so make sure you take some time every now and again to remember how far you have come and what you have achieved.
Hi M25M, I am also not currently working due to GPA, but I had worked full time also for about 2 years and a half years before I was admitted to hospital in a critical condition. I had been getting progressively worse during this time, but was repeatedly told I had sinus infection, so carried on not understanding why I couldn’t breathe properly, lost my hearing etc. I am angry at the misdiagnosis as I believe I would have been able to return to work, as it is I initially received nine rounds of chemo, which didn’t control the disease, so I was still quite unwell for another year, by which time my work terminated my contact. I am now receive rituximab every 6 months and this has stabilised things greatly, but I am still in 10mg of steroids a day, have got steroid induced diabetes and am really struggling to reduce steroids as it makes me feel so bad. I have also been left with a number of issues which restrict me been able to work, although I am ever hopeful this will change. As you will know, it’s not always easy to know when things like fatigue will hit you and which can be severely restrictive, so it will be important to have a good employer. Also as Jane1964 says you have to recognise that you will not be able to do everything so if able get help. One thing I have learnt and have tried to come to terms with, is that life has changed.
Good luck and stay safe.
dust exposure and wegeners 
Wegeners Granulomatosis
Wegeners and diabetes
Daughter diagnosed with Wegeners Granulamotosis
