I’m Lisa I'm 36 and from East Sussex. I wanted to share some of my experience in the hope that it would spur someone else to take that leap that we all know is scary.
I was diagnosed with fibromyalgia then hypermobility Ehlers-Danlos Syndromes hEDS around 6 years ago, chronic migraines since I was 12 years old and diagnosed with osteoarthritis 6 months ago.The moment of diagnosis was scary but also a relief to finally have an answer to all my symptoms, I'm sure you can relate to that feeling. My symptoms with hEDS is long and I'm sure like most of you I suffer with most of them. The worst for me are; chronic migraines, joint pain, chronic fatigue, lack of temperature regulation and having to splint my ankles as I get major problems with my feet and how bendy they are.
I had to leave my job (carer) as the physical side of it took a huge toll on my body. I felt lost and uncertain of my future, this left me grieving for the body and abilities I once had. I have felt this way since my diagnosis up until 2 months ago when I decided NO MORE. I am sick of focusing on what I couldn't do and started to focus on what I CAN do. This was not easy in the slightest as every step was scary, I had already lost my friends, abilities, job, fight, will, everything. It was not a nice place to be in BUT...
With the love and support of my family plus financial support from funding from SussexEDS Hypermobility Support (SEDS) when I decided that asking for help is ok and I don't have to do this all on my own, I have been able to kick start a new career and hopefully be able to run a successful business from my home in the future being a loctician (a hair stylist specialising in dreadlocks).
After 6 years of doubt, money problems, depression and anxiety that leaves you feeling incapable of doing anything other than your daily tasks just to get you through, within 6 weeks of the online course my confidence is soaring and I'm finally starting to feel like me again!
Please don't ever doubt yourself, you are all warriors and manage daily pain that others will never even be able to concept and all behind a smile. Not even a pandemic can stop us, we adapt! I want to take this opportunity to encourage anyone who is feeling scared, frightened of failing and thinking of all the reasons why you can't achieve something that you can! We are zebras and that means something, it brings us closer together and stronger than we ever felt possible, so on that note if I can do it you can!
And a huge thank you to SEDS for giving me this hope, I couldn't have started the course without it, I am forever grateful!