I suffer with Ehlers-Danlos Syndrome Type3, Postural Tachycardia Syndrome, Fibromyalgia, Kyphosis, Arthritis and Endometriosis.
EDS is a genetic condition caused by faulty collagen. I have stretchy skin, unstable joints, chronic fatigue, terrible balance and coordination, on top of a lot of pain. Since the connective tissue is dodgy, my skin, organs, bones, ligaments, muscles and tendons are affected and as I have no breaking point, I basically bend until I dislocate, subluxate (partially dislocate) or cause some other damage. EDS causes me to experience chronic pain, I've been this way since I was 13, every day in agony.
PoTS is a form of dysautomnia which has recently been affecting my life terribly - hence why I need an upgrade of my chair. PoTS is an abnormalilty of the autonomic nervous system which controls the heart rate, blood pressure, digestion, bladder, sweating and stress response. I experience dizziness and light-headedness, awful palpitations, headaches, brain fog, fatigue, inability to control my temperature, shakiness, nausea, bowel and bladder problems. These can sometimes be helped with lying down - so my new chair will have a recline and leg-elevation function.
I'm basically in a lot of pain and feel like I'm about to faint. The powerchair I have now is very basic - nothing can be altered, and with having a variable condition, I need my chair to be able to help me manage whatever my conditions will throw at me.
If I raise the money, I aim to put it towards an Invacare TDX SP2, with a chair tilt (to help me take pressure off particularly painful joints), backrest recline and leg elevation (to relieve the PoTS symptoms). This chair is perfect for me and my conditions. It's so comfortable and will improve my quality of life. At the moment, I dread going out in my powerchair as it is so uncomfortable and causes me to spend days after using it in a flare-up. I want a powerchair that will help my quality of life, not hinder it.
I've been advised by both my Occupational Therapist and consultant that I need these functions in a chair to help me manage my conditions as best I can.
I am able to part-exchange my current powerchair but since the new chair is so expensive, I simply can't raise the funds. I would never be able to save this money and would be so grateful if you could donate to help me take back my independence whilst being as comfortable as I possibly can.
This powerchair (with a few added functions) will change my life!
- Shaista Tayabali
- Adrianne Calgie
- James Rhodes
- Alana Mullen
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