My journey

[PhoenixJ75]

Hello there, my name is Simon, I had stroke last February, spent a lot of time in hospital for the next few months, having multiple CT scans, a brain biopsy,, which didn't show anything, my consultant originally diagnosed me with SUSAC syndrome, and after hiccup in September whilst on holiday down Cornwell with my girlfriend, I had go back into Southampton neurological unit. The consultant then diagnosed cerebral vasculitis. Eventually I got released home. I started back work on reduced hours in the NHS. They tried their best to accommodate me and my condition without really understanding how it was effecting me, fatigue, not sleeping at night and no energy during day. Depression. After a long period of sick leave the NHS gave me medical retirement. The management didn't seem to care or understand how I'd been affected mentally by not being able to do my job anymore.

[Investigator1]

Hi Simon. The rarity of Vasculitis breeds ignorance in some of the most responsible people added to a bit of “can’t be bothered as it’s not my problem” creates this wall of resistance to understand. My wife was Head of Customer Services in a family department store. She ended up resigning because they wouldn’t make simple changes to protect her from Covid. You have to try and penetrate this wall. There are people in my village who know I have been on steroids and cyclophosphamide and now Rituximab infusions who are convinced I have cancer of some sort, even though I have told them. It’s part of the journey mate. Embrace it! You will find a way.

[PhoenixJ75 in reply to Investigator1]

Well there were changes to my work because of covid. There idea keeping me safe was to shove me in corner of the laboratory on my own , almost forgotten about which didn't do mental health any good, I suffered this 6 months . All I can say is my consultant has been great and girlfriend both have been.

[Chipper03]

So sorry to hear about the huge impact on your life. (Also, what a loss to the NHS, which is so short of staff. ). It is such a shock and so difficult to deal with when we are so ill. My work journey has been : After diagnosis, I just couldn’t do my work anymore and changed jobs to something far less demanding, which I did for 6 years while I gradually learnt to manage my fatigue levels. I then got a similar job to the one I’d had to leave, but just 3 days a week, and am in my fifth year of doing that. Good luck with your onward journey!

[AmyS1]

Hi you have my every sympathy. When you have given your all to the NHS it is v hard to be retired sick. If you are part of the union check that everything has been done correctly as there may be a case for appeal, especially if you haven't had time for your treatment to work. Speak to your consultant. Maybe they can help. Check that if all else fails and you accept medical retirement you get the maximum you are entitled to from your NHS pension. Much sympathy to you.

[PhoenixJ in reply to AmyS1]

Hi Am

I was in the union, but got from them is a little bit of advice, as they couldn't deal with any issues that happened before I joined. They even forgot to pay me my last weeks, took great effort to get my payment. Didn't me my mental health, as felt they forgotten I existed, as I say brought so much I wish I died with my stroke.

[Mooka]

Hi SimonThis is a terrible way to be treated, especially when you are mourning the loss of your health. I don’t know much about your type of vasculitis but I think you should concentrate on getting yourself as well as you can. Hopefully with the right treatment you can look forward to working again for a more understanding employer. Learn all about your illness and what you can do to help yourself including pacing to manage the fatigue. Hopefully when things are a little bit normal you can find a support group near you (details on the vasculitis website) and you can talk to people who have had similar experiences. Good luck and do let us know how you are getting on.

[PhoenixJ]

Oh I forgot ( normal thing for me now, as damage to my brain was quite substantial.) Some days I feel like i wish that the stroke had killed me. So didn't have to be burden to everyone. I did work for NHS for 20 years and got rid of me as quick they could.

[Main1234]

You have had so many major life changes mourning the loss of your career, the lack of compassion and support from your employers and the loss of your “normal “ life. Have you been referred for counselling and support? Are you accessing all your benefits etc?

It’s important that you are treated by a consultant with experience in vasculitis the uk helpline and web site are invaluable.

There is also a good Facebook site we’re you are able to chat to people who know what you are going through and offer support.

Please contact your GP for an appointment to assess your mental health , there is support out there.

[Hidden]

Hi my heart went out to you when I read your story ! I am so sorry you have been going through this . I was diagnosed with cerebral vasculitis too , have had severe depression and just held onto my job a couple of times . If there is anything I can do to help please let me know ? I really use complimentary therapies which help relieve pain and helps with energy levels 😀 I found earthing really helped me along with reiki . There is a new book out by Dr David Hamilton called why woo woo works which is excellent. I love both science and complimentary therapies . I manage to work 24 hours per week and I am also a voluntary complimentary therapist for the nhs in palliative care . The silver lining for me with cerebral vasculitis it turned my life around ,I would have never looked at any of this stuff prior . Please message me anytime ! you will know what it feels like to be in the dark and you don’t want other people to suffer . Please take care I hope you feel better very soon x

[vivdunstan Volunteer]

Thanks for posting, and sorry we have to meet like this! I’ve lived with cerebral vasculitis since 1994, when I was just 22. Mine developed slowly initially misdiagnosed as ME, but became more like MS. I was finally diagnosed in 1997. Treatment helped but I relapsed hugely in 2004. Mine is progressive, very similar to MS. My full story is online at vasculitis.org.uk/living-wi...

Sadly this is a particularly rare disease. Primary cerebral vasculitis - where the disease isn’t part of a wider disease process or more widespread vasculitis - occurs in just 1-2 people out of a million. Even among vasculitis medics few have seen it. Neurologists rarely see it. The general public hasn’t a clue. Even among vasculitis support groups this is a particularly rarely seen form, and very different in day to day symptoms from eg skin or kidney forms of vasculitis.

I find it easiest to explain to people that my disease is a cross between multiple sclerosis and strokes. But I have the MS-like form. It’s very difficult though a supportive husband helps me hugely.

Happy to help if I can. As I say mine is progressive, but I’m still here 27 years on, and still smiling.

Are you on any treatment for cerebral vasculitis? Neurologists have a tendency to under treat it, whereas a rheumatologist is more likely to prescribe medicines to try to stop it recurring or getting worse.

[PhoenixJ in reply to vivdunstan]

I'm currently on steroids, well gradually reducing my dosage as my consultant has put me methotrexate. He said I'll be on methotrexate for at least two years.

[vivdunstan Volunteer in reply to PhoenixJ]

Ok that is good news that you are on ongoing treatment. The Methotrexate will take up to 12 weeks to be fully effective, but is a good drug for keeping things under control longer term. It’s what is known as a maintenance drug. I’m encouraged that your consultant has you on that, because many neurologists are very hesitant on treatment like that. All the best.

[AmyS1]

Call the vasculitis uk telephone helpline for support. Also if you are suffering from depression call your GP. I know most GPs don't know much about vasculitis but they do know about depression. There are many people here who have worked for NHS for many years then found them to be very unsympathetic employers especially when you have a rare disease. Your union should help with pension payments etc. Citizens advice bureau may also be able to help.