Tea & coffee chat/walks?

[Robstevens1970]

Hi

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 🙂

[Nadine99]

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?

[Robstevens1970 in reply to Nadine99]

Hi Nadine, yes I have GPA also, yes I have a partner who bears my moaning and groaning.

How long has you’re husband been diagnosed with the illness?

BW

Robert

[Nadine99 in reply to Robstevens1970]

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😂😘

[Robstevens1970 in reply to Nadine99]

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.

[Suzi70 Administrator Vasculitis UK in reply to Robstevens1970]

Outcomes depend on many factors

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?

All the best

Susan

[Robstevens1970 in reply to Suzi70]

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.

BW

Robert

[yogarita1955 in reply to Nadine99]

hi I live in Yorkshire Bingley

and don't know of any support groups near to me

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

[Robstevens1970 in reply to yogarita1955]

Hi, yes bring on your own can make you feel isolated, I think people just ask those ‘are you ok’ questions without wanting the real truth..

I am a bit old school, I know covid has created barriers but meeting people in person to discuss things and create friendships is hard for many.

I’ve not had this long but I know that getting my head round it is key to me getting better, as many people have kindly told me here.

Feel free to stop me a message, Yorkshire is a bit of a trek from here for a cup of tea!

There must be others in your area that you could speak to and possibly meet up with?

Take care,

BW

Robert

X

[Investigator1]

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.

[Robstevens1970 in reply to Investigator1]

Wow, that’s quite story, I agree I do worry about things, mortality and more hospital visits..

I need to find a channel to focus on, I bought a boat last year and was learning to sail but was cut short due to illness.

Good luck with your discus training sounds like you are right back on track!

Yes I just lack a little belief at the moment..winter being here is a downer as well.

BW

Robert

[Investigator1 in reply to Robstevens1970]

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.

[Robstevens1970 in reply to Investigator1]

Thanks Nick for the support, I’ll get there.

BW

[Mooka]

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.

[Robstevens1970]

Hi Mooka, I’m ok nothing compared to others here so I shouldn’t complain.

Yes Addenbrooks have been good once the diagnosis was made, it’s a bit of a trek back and forwards but has to be done.

I’m glad you’re in remission and leading a normal life, yes I don’t mind meeting half way, I see you have a dog too!

Yes I suppose zoom etc would be a good option too, so definitely open to that idea especially at this time of year!

BW

Robert

[Mooka]

So sorry I’ve only just seen your reply. I’ll have a think and will send you a private message later. Take care