I live in Kings Lynn, Norfolk and was just wondering if anyone who is in the area would like to meet up for chats and a rant!
I have found it hard since diagnosis last year to deal with things and miss those conversations that you can have face to face with people who can understand your problems and fears..
It’s reassuring to know that there are others who are on the other side especially when this thing first grips you and messes with your life.
Just a thought, I’m sure there are groups that meet up in different areas of the UK.
Best wishes,
Robert 🙂
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Robstevens1970
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Hi Rob, my husband has GPA and we're moving back to Long Sutton, 1/2 hr from Kings Lynn. Moving hopefully in early Feb. I haven't found a support group to get to easily but let's see how things go. What type of Vasculitis do you have and do you have a supporting partner?
we've been at it since 2010, loads of ups & downs, loads of health issues that GPA has encouraged. Triple heart bypass, 2 new hips, 2 major sinus ops, squamous cell carcinoma, PE's, bronchiectasis, COPD, ulnar nerve, claudication in legs, peripheral neuropathy, can be a grumpy so and so and I've probably missed a few. Hey ho, he looks well tho😂😘
Oh my! He must be such strong person to get through all that! i mentioned before that i have been lucky so far, only touch and go for a short moment but hearing stories like your poor husbands fills me with fear..for potential of whats to come..
I'm glad that he looks ok😀 sounds like a legend to me, so glad you still have him.
Early diagnosis, the earlier the better then less damage is caused by the vasculitis. vasculitis is rare , some types are extremely rare.
Vasculitis can also mimic less serious conditions and can be difficult to diagnose and can be difficult to manage especially in those first 2 years after diagnosis.
Appropriate treatment for the your vasculitis plus those attending multidisciplinary vasculitis centres is certainly a plus but also having a specialist nurse.
My husband was diagnosed in 2001 at the age of 57, the GPA affected my husbands lungs, sinus and joints but after the first 2 years ( it took a while to find the maintenance immune suppressant that suited my husband ) he went on to lead a fairly normal life , slightly different from the one we planned but we travelled, we have been to India, Vietnam, Cambodia, Morocco, and Europe.
My husband renovated 2 houses from 2003 to 2016. He was great with strength work and walks but struggled walking up hills and couldn’t walk very long distances.
There is a social group in the Lincoln area who meet up every now and again. But there is also a vasculitis clinic in Norfolk and I know there are a few members in the group who go to Norfolk so maybe they would like to meet somewhere for a coffee and a chat?
Hi Susan, I agree, I have a good team at addenbrooks but just lack the positivity of a group, meet ups for the mental well-being side. Today I feel bed ridden tmw I feel I can go for a walk, I miss having some sort of control.
It does seem to be a theme where it takes a couple of years to settle with the right drugs etc.. I just need to go through that stage.
I’m glad you and your husband have normal lives almost he sounds a strong willed person!
I’m sure I will connect with people moving forwards if not through the clinic, on here and through the well-being service in Norfolk.
I have no partner so found it very hard to deal with in the beginning it's 3 years down the line now and my family tend to think I'm normal which is frustrating as I sometimes feel not very well would love to get a groups started but don't know how to go about it it's nice to talk to someone who understands what it's like to have up and downs x
Hi Rob, Doctors and Consultants are brilliant at planning to deal with the physical outcomes but what they rarely tell you is what GPA does to your head mentally. I was only diagnosed 4 year ago and as a person that was physically quite fit, never really had any ailments and very confident in my being it all went totally pear shape with what was a life changing experience. I became totally paranoid about every little ache and pain, my self confidence dropped significantly but I decided after a year to take it on head to head. When doctors said “it’s a long term illness” and things like “you’ll probably relapse” I went out and bought a new racing bike. Not everybody can do that I know, but I had to do something, my wife was getting my anxious moaning right left and centre and it wasn’t right. I live in the Yorkshire Dales so it’s not as if I see many people to share my thoughts with but having a focus and this wonderful forum got me back. My message is “if you do something for yourself to make your life better, others around you will benefit” This year I am entering the “Masters” Uk Athletics Championships in the 60-65 Discus Category, did it for my county back in the 70s, bought a discus last year from Amazon for £7.99, practiced all summer and now throwing within 2m of last years winner. It can be done.
Sorry for the early post, I am not in the UK at the mo! Nick.
Honestly Rob you will be fine, there were days in the early stages when I just couldn’t get my head right but I did and you will. It’s a really good point you made actually about winter. Although 2020 was Covid and petrifying my mindset improved massively, just getting out walking and having a glass of wine on the patio made all the difference. Take care Rob it’s more wins than losses from now on. Nick.
Hi Robert I’m sorry you’re having such a rough time. I’ve had vasculitis since 2010 and I’m in remission. I’ve met plenty of people who get vasculitis and live an almost normal life once they’re on the right meds. You’re certainly in the right place for the best care At Addenbrookes. I live the other side of Norwich to you but I’m happy to meet you half way? If you’re not up to that have you considered zoom or FaceTime.
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