I have WG with kidney damge, I've just come out of hosp having shingles in my ear, this also caused Bells Palsy.

[fillyhome]

The shingles has cleared but they say the after effects ( pain & dizzyness) could last for months. Also the Bells Palsy they think should get better but cannot give me any guarantee. I cannot believe how much my life ( and my poor family )has changed since getting vasculitis.

[lisa-ranyell Vasculitis UK Volunteer]

Hi

I also had Bells Palsy a couple of months after diagnosis, presumably caused by all the damage to my inner ears. It was very scary at the time to develop that sudden droop and having to tape my eyelid shut at night. Mine did get better after a couple of months though and although there is some slight nerve damage to one side of my face it is barely noticeable now. It is difficult to come to terms with how much your life changes, you almost have to grieve for the loss of your old life, but there is a new one out there and it can be very positive once you get used to it.

Best wishes

Lisa

[LynneJ Vasculitis UK Volunteer]

My friend had Bells Palsy and doesn't have Vasculitis. It came on for no reason she could think of. She has completely recovered now. I think it lasted about 2 months as well. I hope your not in too much pain.

I am sure your family are just glad you are there.

Best wishes

It will soon be spring!

Lynne

[nannie]

I have WG with lung and kidney damage. 10 years of preds have caused diabetes. I was in hospital 3 years ago with a really bad case of shingles,[ though not in my ear] I thought the pain would never go, but in time it did. You might have to be patient but it will go.

I had the most embarrasing moment in hospital. I couldn't bear underwear, and in the early hours of the morning I rolled over in my sleep and fell out of bed. Suddenly the light went on and the nurses rushed in [male and female] there I was flat on my face with my nightie up around my waist, with my shingled bottom up in the air for all to see!

I can laugh about it now but at the time I was mortified!

My life has changed completely but you have to leave your old life behind and make the most of your new one. I have got a very supportive family and I have learned to swallow my pride and accept help when I need it.

I hope you are soon pain free, look after yourself, Christine x

[AndrewT]

Dear Lisa,

I can quite understand how much your life has changed, son has mine. I now live with my mother, who is also my primary carer, and I'm now also on dialysis, three times a week. Your are however, like me, very much alive which, if you believe the experts, is very much 'beeting the odds! So 'chin up' and enjoy what life you have! Not ideal. I know. Try and find a local support group, in your area;( I attend one called Headway), I'm sure you can find a group near you.

Anyway take care of yourself, stay 'in touch' will you?

Best wishes Andrew