I’ve decided to do these little bitesize challenges here, as they lead into a lot of interesting things I may write more about later on.
1) and 2) to correlate challenge better with days of the month.
1) What is your chronic health issue/disability?
– Ehlers-Danlos Syndrome (hypermobility variant)
A list of common symptoms of EDS (HV) from the Ehlers-Danlos Support UK website (well worth a look for fuller information).
Joint hypermobility with the joints having a wider range of movement than usual
Loose, unstable joints that can lead to dislocations and subluxations.
Joint pain and fatigue.
POTS (postural orthostatic tachycardia syndrome) causing fast heart rate, dizziness and fainting.
Mitral valve prolapse, a heart valve abnormality which is usually only mild in EDS-HT.
Uterine, rectal or bladder prolapse.
I have all of these except the penultimate two (at least yet, thank God).
It’s pretty disabling, and why I need to use mobility aids now to get around – not only for the fact that my knees, elbows, shoulders and wrists regularly sublux and are usually painful, but for the fatigue and POTS-related issues that can mean I need to sit down or lie down suddenly without much warning.
My crutches not only take a lot of the pressure off my knees (putting it onto my shoulders and elbows, but nothing’s perfect) but usually at least stop me falling over suddenly before I can get to a seat. I’m looking forward to getting a wheelchair from a wonderful friend in Leicestershire in a couple of weeks time via another wonderful couple of friends visiting family in Harrogate. This will increase my ability to go out and do things like shopping and visiting museums and country parks a huge amount.
– Fragile X Premutation – a genetic disorder responsible for my fertility issues, and my various MH problems – MDD, GAD and ADD.
Basically, it’s the reason why I have potentially disabling issues with concentration, anxiety, sensory processing and fertility above and beyond my chronic pain and fatigue symptoms from EDS. It literally means I don’t produce the neurotransmitters which allow neurotypical people to inhibit the “anxiety pathway” in their brains, and why my venlafaxine is so utterly necessary.
It could potentially give me FXS ataxia in later life, though if anyone will be able to tell above and beyond the EDS symptoms by that point I don’t know
2) What’s the weirdest advice you’ve been given to “cure” your condition?
I’ve had all the classics – every vitamin and mineral under the Sun, mindfulness, CBT, exercise (I do it, and try to improve my muscle tone to try to improve my joint stability, but it’s really not easy, and far from a miracle cure), “just not using my mobility aids”, “just not taking my antidepressant/anti-anxiety medication”, meditation, acupuncture, going gluten-free/lactose-free/vegan/my very expensive diet, electric shocks, and “my husband should beat me more” (that’s an online one, in case you haven’t guessed).
A particular one that really sticks with me was actually fertility related rather than EDS-related (perhaps the physical issue of joints coming out of sockets is a bit too tangible for the real woo-merchants).
It was from a woman who claimed that she had been told she was irrevocably infertile due to Premature Ovarian Insufficiency, but that she now had three children after going completely gluten-free, eating clean, and taking her own expensive proprietary blend of nutritional supplements.
This was a bad schtick to use on someone who knows that POI occasionally reverses completely, usually near the traditional age for menopause, but it filled me with completely helpless rage. I try to remind myself that this women may simply have had the reversal (happens in 5-20% of cases for reasons not well understood) and credited her personal diet fad, and may not have been deliberately preying on others, but the tone was incredibly predatory and the price truly extortionate.
I may have written her a long email, heavy with links to medical journals. I haven’t had the spoons to check her blog again, but I doubt she has taken much of it onboard.