- CRPS Complex Regional Pain Syndrome
- Interviews
Pia's interview
How did all start?
All started when I had an accident at work. I twisted my right ankle/foot quite bad, I got nerve injury on both side of ankle/foot.
Do you already have a diagnosis? How long did it take you to get it?
Yes, I got diagnosed with CRPS 2 in April 2018 about 6 months after the nerve injury on my ankle/foot.
For what medical specialties have you been treated? What has been the most useful specialty for your?
None.
What has been the most useful thing for you so far?
Medication has helped a lot and physical therapy.
What have been your biggest difficulties?
Walking, going down on stairs and generally things where I have to use my feet. Because even standing for more than 10-15 minutes starts my right foo/ankle especially toes changing color, burning sensation comes after walking too much etc.
I was very hard to use crutches or walking stick, what eve you call then in English. Nowadays I use one or two crutches when leaving home for work etc.
How has your social and family environment reacted? Have your social or family relationships changed?
Family has taken this as well as they can, I think. It's been difficult time to time though, but generally they've understood why I can't do things as much I use to.
Social life has become worse even though I have never been "a social butterfly". Most of my friends or people I considered as friends have disappeared. I think those whop really are Friends are left. Most of my social activity beside work is on the net (Facebook, WhatsApp and online games etc.)
What things have you stopped doing?
Going to gym. I liked, loved, weight lifting, but can not do it anymore...not right now anyway.
I went to rock gigs as often I could but haven't been any since diagnoses.
I don't take our dog for a walk so often anymore, only if I feel like it's OK and will not make me feel worse on that day.
What do you think about the future?
I think anything can happen. I hope I get rid of this CRPS but not if completely then I hope it goes to remission.
I hope I'd be able to work even part time if not full time. I hope my social life gets better in time. Life is good, always no matter what. I never will this thing take my life completely. It is possible to life with it and still have a happy and good life..
So far, which years have been the best years in your life? What have you done during them?
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What would you like to do if you didn’t have your condition?
I would travel. I would go to the gym. I would walk more. I would love to have my own job, previous job, as it was.
If you had to describe your life in a sentence, what would it be?
My life is happy and good as it is, even though it could be better, I take life as it comes.
Finally, what advice would you give to a person in a similar situation?
Never ever give up. It may be difficult to accept and change a course of your life but you, only you, can make it happy and good. Accept, think 'life goes on, no matter what". Be positive, think positive, even if it feels like nothing is good. Try to be positive and believe, it is OK to feel sad, angry, frustrated, worried etc. These feelings are there no matter what, you are allowed to feel with all your emotions. Cry, shout out loud, get your frustration out but never give up and remember all those good things that make you happy. You're worth living even though life sometimes, or most of the time,gets hard.
To feel you're not alone with this, find some support group or groups. It is important to see there are others in same kind of situation than you are in. Talk to someone if it feels like you're lost or what ever.
Don't lose yourself!
