This morning I was on the phone to my mum when she brought up the fact I hadn’t blogged in a long time. I am rather good at finding excuses for why; too tired, too busy with the kids, don’t know what to say. But none of those are completely true. So bless her, I rambled for quite a while as to the reasons why.
Firstly Ableism. Honestly I’m mad for allowing myself to be beat down enough to feel I didn’t deserve a voice as an activist for people with Dystonia and other invisible illnesses anymore. Up until the last several months I had been having a relatively stable patch which I had been making the most of, and for that simple reason I felt I wasn’t ‘sick’ enough to do this anymore. Which is frankly ridiculous. I have several conditions all of which are chronic, a couple that will continue to deteriorate as I age. My good spells generally never last longer than a Botox cycle, yet because I don’t fit into a nice stereotypical tick box of what disability should look like I felt like I couldn’t blog. I expect myself to be able to do everything that a healthy person can do, because that it is what people, I feel, expect of me from many not so subtle comments for example lose weight your joints won’t hurt as much.
Secondly, was my depression and anxiety. The anxiety and paranoia I experience partially stem from post natal depression but are largely side effects of my medication. I feared hugely that holding my hands up and saying ‘Hey, I’m trying my best but I’m struggling like crazy, I’m terrified by the deterioration I am currently experiencing in my body and I don’t know to do’ that my doctor’s would somehow read this and decide to withdraw the medication that is so vital to me and pack me off for yet more counciling. That may seem ridiculously paranoid to read but when you’ve lived years of doctors gaslighting you, undermining your very real physical symptoms, skirting around the subject of mental health is now habit (though I am on antidepressants now).
I hope that clears things up. I want to blog here more. It helps to write it down and connect with others in the same situation.
At the start of January, I underwent a small surgery. I’d known for several weeks that I had needed it but due to being pregnant my surgeon wanted to wait until I was safely into the second trimester before we risked putting my body through the stress of it. I am by no means a stranger to surgery; due to my varying conditions I’ve had more surgeries than I care to think about. Whilst I was naturally nervous with all of them, this one was by far the worst. With my previous surgeries, it had always been carried out under a general anesthetic, this time, however, as much as I would have far preferred to be knocked out, I was wide awake and able to feel everything.
My surgeon had made it clear to me from the start that if he could have put me to sleep he would have done, but as it was a quick surgery he didn’t want to do so due to the pregnancy. A decision that I fully agreed with. The complication we faced was that I experience no response to the local anesthetic. It doesn’t matter the type or amount you inject me with, it does nothing. This is down to my Classical Ehlers-Danlos Syndrome. My surgical team and I have a very good relationship, and we talked at length about the possible sedative medications we could use to help me through the procedure; ultimately it transpired that the few medications that were appropriate to use I am severely allergic too. With no other options, I consented to undergo the surgery with no anesthesia or pain relief.
Clambering onto the operating table, staring up at the bright lights above and conversing with the operating surgeon went against everything that felt natural to me. My surgeon cracked joke after joke, trying to keep me focused on anything but the pain that his scalpel inflicted. Having to force yourself to lie steady, and not scream for help whilst someone is cutting into you, to try not to curl up in a ball and cry hysterically is hell. If I hadn’t needed the operation I would not have put myself through it.
I had wrongly presumed that because I can handle dislocations like a pro that this surgery would not be that much harder. Instead, I find myself waking up at night in a cold sweat, gripping my duvet, absolutely consumed with fear. Night after night I go to sleep and dream I am back on the operating table except for this time the pain never stops, the surgeon just keeps cutting bits of me away until there is nothing left.
I am fairly certain that the nightmares are getting worse due to the possibility of needing a c-section in the not so distant future due to a low-lying placenta. Whilst I know if this is the case my team will put me under for the operation, the irrational part of me has still built up a fear of once again being on the table able to feel everything. A position I hope never to be in again.
At the start of this week I had an unusual amount of extreme spasms, these had been triggered by a medication and have now settled down. At the time it would have been sensible to have spent the day in bed where I would have been safe. Instead I dragged myself, rather literally, to college. Now my class have witnessed some of my spasms but not to this extreme. Previously I would have wanted to stay home due to embarrassment, instead I went to college embracing my illness and was only irritated at my pain levels.
As much as I would rather that I did not have any of my chronic illnesses, I am thankful for them. Since being ill my confidence to go out in public with my limbs distorting, my jaw dislocating and my body paralyzing when it has had enough has slowly climbed. Now I can laugh my spasms off and joke about them. I am very open with others about it as I would rather educate them than have these 3 illnesses remain unheard of. I must give credit to my class though who did not bat an eyelid at the extremes my body was going to, I know this helped me relax when I got there. Dystonia and Lyme Disease may have turned my life upside down but it has also filled me with determination and inspiration to pick up the pieces of my life. I always thought that I had to stick these broken pieces back together exactly as they were, retracing my steps, but what use is living in the past? Now I’m picking up the pieces and carving a new path for myself.
I am going to be cured of Chronic Neurological Lyme Disease, so despite the fact I will always have to live with Dystonia and EDS, I have so much hope in my life.
I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything