help with the mental health side of vasculitis

[DC04HM]

hello all, I’ve just been recently diagnosed with suspected vasculitis. Waiting on skin biopsy results to determine which kind. Spent 5 days in hospital due not being able to walk from how swollen my legs and feet were plus covered all over with the typical vasculitis looking rash. Released from hospital a week ago with steroids to take. Rest for a few days the rash starts to fade and I can walk again fine and then I overdo it even just from being out and sitting down with no more than an hour up and I find myself completely covered again not being able to walk. Mentally this is extremely hard on me, as someone who already struggles massively with mental health socialising is something that is a critical part in my life to help combat that. The isolation of this is crushing. My family don’t understand why I wouldn’t just stay at home and rest but it’s weighing up whether dealing with physical or the mental pain of this is easier. Also ready such scary stuff on how this condition can get so much worse and it’s stressing me out. Any advice on how I can deal with this?

[JaneLE Administrator]

morning, it is a real challenge of being out there and resting. I’ve had vasculitis for 11 years and still overdo it sometimes. You have to find your own balance, it takes time. Also please don’t be hard on yourself, it is a difficult thing to deal with.

For the family, can you ask them to read some of the stories on the vasculitis website, I think it helps if they read about others, and then you don’t have to explain it.

Are you a member of the Facebook group? The support there definitely helps you to not feel so alone.

Go gently and be kind to yourself.

Jane x

[LindaMRich]

I really echo what Jane has said, be kind to yourself! We are our own worst enemies. ... REALLY! : ). But that can also be your survival kit. The physical side is hard to balance & will take time (I'm 8 years in & still learning!), but then the mental health side needs as much 'input'. We don't know what's going on some of the time, so families will find it difficult to comprehend too.Accept you won't always get the balance right, this will form part of your learning. Can you explore a new hobby that will interest you & 'force' you to rest? - I took up jigsaws (but have to put the timer on, getting engrossed & going after midnight is not helpful!). Crafting? Etc. Social side, I was learning Greek which had to be move to Zoom lessons in the pandamic - so I set up a social chat group amongst us. We would have tea/coffee 'dates' on Skype. Check Vasculitis UK out for loads of helpful advice. There's also the FB site, with all sorts of fun, social & helpful advice. Assure yourself you are not alone! I wish you well! : )

vasculitis.org.uk/

[Lovsterlover in reply to LindaMRich]

I hope you r in a better place now. I have cutaneous vasculitis and there are days that I get tearful because not only the pain that I get but like u I feel isolated from the outside world luckily I have a very supportive family who live locally. My husband is marvellous and he takes me round to see them and the grandchildren in the week sometimes I have to use crutches but it is something I really look forward Ito and it gets me thru the week. At the weekend they all come round here where we have a very noisy few hours together I do miss going out to the shops.and having meals out but that’s not possible at the moment because some days I can’t wear even slippers. I am on 15mg pred. And 50 azothiaprine plus 10mg rivaroxaban daily. Am ever hopeful that I things will improve Keep your chin up and concentrate on the things that bring you comfort. LL

[oldtimer2]

It's difficult coping with a new illness and one that is so alarming too! I read as much as possible when first diagnosed and it did depress me especially as no-one around me seemed to take it seriously enough. Looking at my swollen red painful legs, they went "oh...can I take a photo?", but no-one looked at my face to see how I was coping. No-one set out a plan of what needed to be done, what tests I needed, when and what the results meant. As the GP honestly said "These decisions are outside my level of competence". They were outside mine as well, but it's my body and my responsibility.

But as it came under control I realised that I was just going to have to take charge of managing it myself, keeping careful records of what blood tests were due when, when to check my urine, how to monitor my breathlessness. I have to shut out those people who think that I 'should' be doing more and download lots of books to read...putting my feet up, setting the kitchen timer to get up and do gentle exercises every hour and ignoring my partner's pleas to go out for walk.

Post on here if you need support, everyone has been very helpful!

[Mooka]

I’d suggest you keep away from dr Google there’s a lot of rubbish out there. Keep to the vasculitis U.K. website and the Lauren currie twilight foundation for reliable information. You could google the spoon theory to help you pace yourself It was originally written by someone with lupus to explain her fatigue to her friend. But its fame has spread. I showed it to my family years ago, some of them got it some didn’t. Come back here and ask questions or come back and just have a rant. We’ve all been there. Check out if there’s a support group near you. I think some have started meeting up again and some have meetings via zoom. As oldtimer2 has said don’t expect your GP to know much about vasculitis. Learn about it yourself and learn to look after yourself. I’m over 13 years in and considered in remission but I still overdo it sometimes. You have to weigh up what is important to you ie spending time with people that are important to you and you know it will tire you but it will give you happy memories. Most of all remember once you get the right treatment things will improve and you will start to feel a lot better.

[Sandalsforever]

Vasculitis is a hard disease, but take day by day. Stress can make it worse so learn what your triggers are and work on lowering your stress. The first year is the hardest, I find it is hard to stay in remission, you start feeling better and want to go back to your regular routine but your body then bounces back into a flare. Listen to it - you may need to change med or doctors until you find the right combo. Or you may need to just let you body rest to fully recover. Take some time for you - it is a new normal! Every day is a new normal. It won’t always be bad bit right now it is. It will get better- it is a learning curve, you can do it, you are a warrior! Educate your family and yourself - get counseling- your life has changed - it will help!