I have cerebral vasculits, since 1994, when I was just 22, and the symptom pattern is totally different from other more common forms of vasculitis like Wegener's. Mine is a neurological disease. The vasculitis in my brain causes lots of strokes, often small ones, but cumulative brain damage, and a wide range of neurological symptoms as a result, as my brain struggles to control many parts of my body, including my arms and legs, my bladder (permanent incontinence, so I have to wear pads permanently), my hearing, speech, eyesight, sleeping for up to 17 hours a day, memory, concentration, ability to read, etc.
Day to day it's like living with multiple sclerosis, in a primary progressive form, but with the added extra that it could kill me in a flash. And my form of cerebral vasculitis is very aggressive, resisting much conventional and unconventional treatment. As things are going I don't know how long I will have.
Generally I cope well with it. I'm calm, philosophical about things, very rational. My consultant has used the term 'phlegmatic' to describe me, which once I established wasn't to do with phlegm was quite a compliment! He's often more affected by things than me who tends to be very level-headed. But there are some times that upset me most.
What I can never get used to is when my arms and legs, and other parts of my body, just feel 'wrong'. It's really hard to describe this sensation to others. I believe it's similar to what people with MS get at times too. But because it doesn't happen to me all the time - though I always have trouble controlling all my limbs and need, for example, to use sticks or a wheelchair permanently - I never get used to it. When this 'wrong' sensation happens my limbs feel alien, numb, often like lumps of wood. It's not me, and it doesn't feel like me, and I hate it. Usually when this happens I have to rest in bed for two or more hours, until, hopefully, the 'wrong' sensation passes, at least for a while. But it doesn't always, and sometimes lingers for days.
If anything was going to stop me coping at the moment I think this is is it, if it happened more and more frequently. And that might easily happen. It's the one thing that reduces me to tears though. Generally I accept my lot really well.
At the moment my disease is not stable, and I'm still waiting (since early September) for an urgent referral to a rheumatologist who can approve an experimental last-chance biologic therapy. This was decided upon after my rounds of Cyclopshosphamide infusions in the summer (horrific, gruelling stuff) failed to make any impact on my disease at all, well apart from shooting up my inflammation markers to record levels! I've had to raise my steroids substantially twice while I wait for this appointment, and I still don't have a date. But maybe soon. Fingers crossed.
In the meanwhile please brain/body, stop feeling 'wrong' so often. It's very upsetting.