Today's guest poster is another from the Apple Isle, Tasmania, Australia. Kate is yet another patient with a kickarse sense of humour who I've been lucky enough to get to know. (I'm starting to detect a theme here. Could sarcasm and cracking sense of humour be another symptom of Dysautonomia? Up there with crazy blood pressure and a need to frequent foul public toilets when out?) Kate gives a great insight into the contradictory and complex thoughts we have when trying to understand our bodies and this whole illness malarkey. Thanks Kate.
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Kate is a 31 year old Taswegian. She
has Joint Hypermobility Syndrome (AKA Ehlers Danlos Syndrome
hypermoobilty type) fibromyalgia and OI/POTS. She lives with her
husband and fur and feather babies.
At first I didn’t think I was
legitimately sick enough to post here. I seem to keep battling with
the idea that maybe I’m not as sick as I actually am, which is
nonsensical. I mean really, this whole illness is like living in
Alice’s wonderland. There is a photo record, spread amongst my
friends and family, of a lanky, very often sleepy, Kate. There is
actually a bit of a joke that if there is a photo of me, it’s
likely to either be me lying down, or looking like I’ve just been
woken up. However, there is this other photo record, one of me on
horses, bushwalking and traveling and nursing and volunteering in
developing countries. Just when you think you know who you are and
what you are capable of, and how you appear to others, it gets turned
on its head and you become this pain filled, sleeping zombie.
Sleep, long, coma like, all engulfing sleep. Actually, the pain and the fatigue have always been there, but somehow the internal resources to overcome them were also there. But your body can only take so much. What was weeks of being confined to the house or short trips from the house has turned into months, nearing a year. I have managed, time and again, to crawl from my zombie lair and re-enter the world, push through the pain barrier to get to the next thing I’ve been dreaming of. But right now, for the first time, I have to put big things aside.
Sleep, long, coma like, all engulfing sleep. Actually, the pain and the fatigue have always been there, but somehow the internal resources to overcome them were also there. But your body can only take so much. What was weeks of being confined to the house or short trips from the house has turned into months, nearing a year. I have managed, time and again, to crawl from my zombie lair and re-enter the world, push through the pain barrier to get to the next thing I’ve been dreaming of. But right now, for the first time, I have to put big things aside.
You start to
develop a bit of a narrative about your life…and your mental health
with this illness. Sure, I was a bit of a depressive teenager. I
struggled in high school to concentrate and would come home from some
outdoors outing and sleep for days. I had panic attacks starting in
grade 12 after getting chicken pox. I knew it wasn’t in my head,
that my body was failing me, but there was always that niggling
thought “if you just pushed that bit further...maybe you would
break through some invisible barrier and have energy, have no pain,
maybe I’m not as sick as I actually am”.
The amount of times I have tried to get fit, gah, only to be doing relatively well and then step over a cliff and go into free fall. One day standing up is pleasant and easy and actually amazing, the next day you stand up and it feels like your heart is going to take off through your chest and your guts are falling through the floor. It would tie anyone’s head in knots.
The day I finally saw a doctor who explained what was happening to me, it was like my head popped out of the labyrinth and everything was clear. I could finally stop wondering around in a nightmare of questioning if I had created my own freakish reality. I can now name when my body is doing its thing, and I can call it when my head is maybe not in the best place. It makes all the difference. It might not put me on plane to Bangladesh, but it means I can wake up in the morning and be a bit more ok with whatever happens when I stand up.
The amount of times I have tried to get fit, gah, only to be doing relatively well and then step over a cliff and go into free fall. One day standing up is pleasant and easy and actually amazing, the next day you stand up and it feels like your heart is going to take off through your chest and your guts are falling through the floor. It would tie anyone’s head in knots.
The day I finally saw a doctor who explained what was happening to me, it was like my head popped out of the labyrinth and everything was clear. I could finally stop wondering around in a nightmare of questioning if I had created my own freakish reality. I can now name when my body is doing its thing, and I can call it when my head is maybe not in the best place. It makes all the difference. It might not put me on plane to Bangladesh, but it means I can wake up in the morning and be a bit more ok with whatever happens when I stand up.
******************************************For those unfamiliar, a short explanation of Dysautonomia can be found here.
One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.
Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.
Don't forget to check out the other awesome guest posts:
1. Claire: The ups and downs on the journey to diagnosis.
2. Amity: Art from the heart.
3. Claire: Finding your personal treatment regime. A spoonful of this and a teaspoon of that.
4. Belinda: Coming out.
5. Damon: The husband's tale.
6. Rachel: A wee problem.
7. Zen: A day in the life.
8. Claire: I think I can. I knew I could.
9. Liam. A son's tale.
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For many of us we are still processing this whole sick business, sometimes we get it right, sometimes not so much, and sometimes it is still all a bit perplexing and that's okay. We're all getting there. I coudn't resist this song by Sarah Blasko (particularly with the horse in the clip).
Kate - thank you for this. I was diagnosed just over a year ago and am still struggling. Today i found myself having to take a sick day and spent most of the day in bed. I felt so guilty even though i know that the people around me were so understanding and willing to adjust their schedules so i could get some rest. I too felt like if i just pushed myself maybe i could do it and break the sickness barrier. This, along with a long nap, an early bedtime, some good drugs and a friend who reminded me to allow people to help me and gave me a big case of guilt away gave me some much needed perspective. Thank you!
ReplyDeleteThank you Kate, well written and so similar to how I felt through my life. I have EDS-H and POTS too along with all the fun things that EDS brings. Only got my diagnosis last year after going through many periods of beating myself up for being lazy, in pain and sleepy all the time. Thank you for expressing what so many of us go through xxx
ReplyDeleteit's certainly hard to keep perspecitve when things are constantly changing and hard to work out when and how to trust or not trust your body, I really hope you had a good guilt free rest,
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