Ask the Family: Life with VHL

Question: I’m writing a report and I need to know what a day is like when you have VHL.

-- Carla V.

Answer from Amélie, France: Ups and downs, as in life in general. A malady is like a person -- you have to get to know it in order to live with it. I am grateful for all the good information in the Handbook.

Answer from Cathy C., New York: My life with VHL....I work 45 to 50 hours a week running a store. I’m on my feet 10 hours a day in constant motion at work and then I come home and mow the lawn. If I’m working late I walk five miles with my walking buddy in the morning. I feel I’m very lucky to have the life I have, and I enjoy every minute of it. I’m healthier than I’ve ever been in my life because before VHL when I didn’t feel good, I just lived with it. Now that I know I have VHL I go to the doctors and do something about it. I’m living a much healthier lifestyle and I take care of myself. There are good sides to VHL, we just need to look for them.

Answer from Babs M., Australia: Well for me, there are good and bad days. I can’t scoot on my scooter at the moment, because of balance but I’m not bumping into walls anymore, which is a great relief to my family. I am slowly regaining function after my brain surgery. Nor am I spending so much time picking myself of the floor. Looking at the ceiling from the floor really helps you get a good perspective of what things look like to a baby or small child.

I’m having a lovely Mother’s Day here today, despite the fact that I woke up with a really stiff and sore left arm and shoulder, and couldn’t meet people for breakfast..(Left over from a bad inline skating injury I sustained a few years ago.) The shoulder injury has nothing to do with VHL, but it’s all connected. I thank God for the invention of the rice sock, which is useful for managing pain without drugs. It’s a sock (actually it’s a tube sock from an airplane trip) that I fill up with uncooked rice. I heated it up initially in the microwave for about 1 minute on high. But now I have used it so much, that I only need to heat it up for about 45 seconds. Then just place it on the part that is painful. If it’s too hot I put another sock on top. I’ve found it a bit safer than a hot water bottle, which can be a bit dicey on the face or ears.

I meditate as well as do stretches every morning when possible, which helps with the mind-set for the day.

I try to hang out with positive thinking people as much as possible. Which means that I don’t always like to hang out with myself! I also have a pretty warped sense of humour I have been told, that has helped me get through a lot of things.

I keep myself as busy as I possibly can without getting too tired. I don’t have as much stamina as I used to have before my brain surgery, but I still try to keep up my pretty hyperactive pace.

I guess you could say that I take the lemons I have been dealt in life, and make lemonade, lemon spread, lemon meringue pie. I eat lots of veggies and fruit. Make sure I keep up with my doctor and dentist appointments, plus my acupuncture treatments.

In some ways I am even more active than I was before. I have found there are pluses and minuses with VHL. And I have been and am very blessed to have some very inspiring people in my life.

Answer from Jennifer K., Australia: My life with VHL ... I have had several spinal surgeries that have left me with some deficits, but I’m generally doing well. At the moment my day consists of gentle Yoga (for flexibility and strength), volunteering at the Art Gallery and the Aquarium (to keep my brain active), going to the osteopath (nerve and tissue re-alignment), having a massage (for muscle and pain relief) and acupuncture (haven’t tried this before, but I am doing it hoping it will help my neck movement and propreoception. That’s your ability to know where your legs and arms are. Sometimes I have to look over at them or move them to be sure where they are! Fortunately, they are usually right where you left them!

We have just moved to a new town and I’m still doing my medical shopping but I keep up with my medical surveillance and I’m pretty much on top of it now. This town doesn’t have all the medical experience and knowledge needed. That’s why the Alliance’s web site is so helpful. I give that address to doctors and anyone else dealing with VHL, so they can get accurate information. It’s great!

I feel it is important to equip oneself with the skills needed to handle or control to the best of one’s ability one’s own situation. And everyone’s needs are different. That’s another reason the Family Alliance is so helpful. We help each other and one can talk with someone else who at least knows what VHL is and can help because they’ve been there.