Sarah Gearing, with assistance from friend Sara Millington, on the ups and downs of life with EDS and hopes for the future after surgery.
EDS is often described as the invisible illness. To some degree this is true, because when I’m on a good day you would never know the struggles I have with my body, and how it’s letting me down. On a good day I might be out and about with my faithful assistance dog Otto, doing my shopping, or visiting a friend or seeing my mum who lives nearby. On a good day, there are no seizures and I remain cognitive and conversant. On a good day David and I might get to have a date – we love the cinema and attending music concerts (but planning for that is a roll of the dice – who knows if I will be on a good day or a bad day for the event?). On a good day I might be able to make phonecalls, use my laptop to find things online and be able to read easily.
I thank God for every good day. Each one is a gift. But over this past year they have been getting few and far between.
The bad days are harder to talk about. They usually involve heavy doses of pain medication, dislocated joints, extreme pain after eating and bouts of throwing up. Spending the best part of the day feeling dizzy in bed with blurry eyesight and a head full of thick fog is incredibly boring at best. The worst bad days, however, involve seizures, often paramedics, and, if I am unlucky enough, a sleepless night in a hospital being seen by a string of doctors who don’t know what to do with me.
The thing that is rarely talked about by many EDS sufferers going through similar experiences is the aftermath of the seizures. Once my body goes into shock following a seizure my ability to communicate may evade me completely – oh, the guessing games I have had with carers, family or close friends with only my eyebrows to express myself! Frequently after these episodes I am not myself; I can feel confused, disoriented and sometimes speak and act just plain crazy. I have literally seen video footage of myself in which I feel like I’m looking at a slightly deranged stranger (who seems to demand a lot of snacks).
Despite all this I am feeling optimistic, and hopeful for the future. The neck fusion and skull stabilisation surgery I am about to have is no cure for life with EDS; however, I am fully anticipating that many of my worst problems will be alleviated by this surgery. For one, my skull won’t be able to dislocate from my spine (that’s something to be happy about right there). But also the relief of pressure on my brain stem will enable my cerebral and spinal fluids to flow freely as they should, instead of being blocked and filled with the toxins that create what I call my ‘brain fog’. This should therefore also prevent my dips in oxygen levels and the frequent headaches and pressure in my head. There are no guarantees, but I am hopeful that this operation will also restore some of the eyesight that has been failing me.
A lot of these benefits will, I hope, amount to getting some life back. I am looking forward to sitting up for longer periods, going out to see friends for a few hours, and hopefully experiencing mornings once more (I currently never make it out of bed before lunch and on a bad day I only emerge towards the evening). I long to go on dates with David where he can be my boyfriend and not my de facto carer, and to take my wonderful Otto to the park or a walk in the woods without relying on someone else to do it for me – to breathe the fresh air for myself!
If you are a person of faith, please pray for my surgery to go well this Thursday. If you are not, please cross your fingers and wish me well. I send my love and heartfelt thanks to every single person who has made it possible for me to have it. Words are not enough, but I hope to come out the other side with plenty more – watch this space!
 |
| Click Video to Play |
