Burning Nights: CRPS and Double Amputations: Chronic Illness Podcast
What is your disorder? *
At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
I was a trained Barrister (lawyer), I was lecturing in Law and became Head of Law at a college. I was happy, content with life, in love with a gorgeous Armed Forces man, just bought our 1st house and we were looking at planning a family
What would you do if you were not dealing with your invisible illness? *
I would have continued my legal career as a Barrister in Family law
What would you like people to know about your daily life? *
I am now confined to a wheelchair and am an above knee amputee due to the CRPS. I live in extreme burning and freezing excessive pain every day and suffer from wild temperature issues, swollen stumps as well as suffering from tremors and spasms on a daily basis. It’s so difficult and simple tasks such as getting dressed can take so long to do. I have to be careful what clothes I wear as they have to be light due to the hypersensitivity of both my remaining stumps. But I have the fantastic support of my husband. I also founded a charity - Burning Nights CRPS Support in the U.K. which I run along with 6 other volunteers.
What would make living and moving in the world easier for you? *
Finding a cure for CRPS to get rid of the stabbing, burning pain and other signs and symptoms. Also Better access to buildings, shops, bars etc for wheelchairs
Do you have any life hacks? *
Using your iPhone to control the heating. Get a doorbell that comes through to your phone to tell the person where to leave the parcel or the doorbell that comes through to the iPhone and you press a button on your phone that opens the door. Learn to adapt clothes for your disability or use safety pins to help keep clothes stay shut! I’ve had to adapt clothes so they don’t get trapped in my wheelchair for example.
What kind of support do you get from family or friends? *
I get amazing support from my husband and sometimes from my family. I couldn’t do without my husband as he is my full-time carer
Would you care to relate the details of what happened when someone didn't believe you were disabled?
I was told that I couldn’t be in this much pain as I looked too well. I was also told that my condition couldn’t make me disabled as it was a psychiatric illness
How has your invisible illness affected your relationships? *
It has been strained occasionally but he is always with me. It’s been tough but I love him.
Is there anything you are afraid to tell even the people closest to you? *
When I’m feeling low and depressed I don’t like telling my husband and Family because I feel I’m burdening them. I always try not to tell them how much pain I’m in. I always say I’m fine.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
What is your best coping mechanism? *
Distraction techniques - definitely
What are you the most fearful of and hopeful for in the future? *
I would like to hope that the condition would get either a specific medication or cure. However, I’m fearful that it won’t happen. I also hope that my condition does not worsen at any time in the future
What is your favorite swear word?
Is there anything you want to make sure we talk about during the interview?
If we possible could we mention the U.K. charity that I founded - Burning Nights CRPS Support and the work we do including raising awareness of CRPS and supporting all those affected by the condition. I would also like to include our web address, mention we’re on social media and we have a U.K. helpline
Any questions you think we should add to this list?
Maybe ask how I got CRPS ie what caused it in the first place and when?
What is the hardest and/or best lesson your condition has taught you?
The hardest lesson is that you soon know and realize who your real friends are when you are diagnosed with a chronic illness especially one that is invisible
What is the best purchase under $100 that helped your life
Grab stick to pick up things from the floor
What is the biggest lesson your illness has taught you?
Live each day as if it was your last