PJs and Painkillers - Ehlers Danlos Syndrome
Hey guys!
So I was nominated for a Liebster award...No I won't shut up about it. First good thing to happen to me for a while! First time I've felt excited for a while! So I will get overly hyped without shame!
Anyway!
Some of the questions I was asked caused me to think a lot about why I started blogging, and where I want to go with writing...
I know I shouldn't worry too much about that kind of stuff this early on, but hey...Anxiety Girl will be anxious!
Not only to I want to help in the fight for Equality, mainly towards mental health...I also want to raise awareness for invisible illnesses. So I decided to start a new series of posts that I will be calling :
"Pjs and Painkillers"
These posts will be to raise awareness, support and show understanding of chronic illnesses. In this post I wish to focus on the one I know all too well - Ehlers-Danlos Syndrome / EDS (Also known as Joint Hypermobility Syndrome / JHS)
Now there a few words for "people like me" if you will. My personal favourites are:
- Zebra - From the doctors saying "When you hear hooves...think horses, not zebras". The horses are the explainable illnesses. The zebras are the rarity. For that reason, Ehlers-Danlos is actually pretty hard to get a diagnosis from a doctor...They seem to think they must rule out every other slight possibility which is more common. See many of my doctors have told me I have the condition...but they are unwilling to give me a formal diagnosis as they feel "it wouldn't change anything anyway"...Hence the need to raise awareness...
- Spoonie - Coming from "the spoon theory" for people that battle with chronic illness. The spoons are our energy...and to use them all at the start of the day means we will be exhausted in the evening. Some days you will have so many spoons that you feel great! Some days you know you are running out of spoons quickly. Many people with chronic illness will tell you they have to think forward about their day and how much energy they think they could use compared to how much they feel they actually have.
For anyone trying to wrap their head around these two expressions...God bless you. I wish I was back to having no experience of unexplainable pain and fatigue...Some people think it is offensive, but I genuinely love them! It's like someone saying "You are not weak, you are unique". I feel a little "happy glow" with this!
For that reason, I want to give a description of what Ehlers-Danlos actually is. I have type 3 (hypermobility type).
There's no easy way to explain what scientifically goes wrong unless you have studied biology. Basically my collagen (my body's glue) is weak and my joints are loose, meaning my joints move further than they should. That would only class as being hypermobile...if it wasn't for the symptoms that coincide with this. Now every EDS zebra suffers differently, and when I was first told I had EDS the doctors explained it like a spectrum. Many people can be hypermobile and have absolutely no symptoms, whereas EDS starts affecting our life to some degree. The symptoms I personally experience are as follows:
- Fatigue - I can feel like I have run a marathon from just going to the shop.
- Elastic skin - I never knew this wasn't normal (When you grow up with it, you don't think anything of it!) but I can stretch my skin further then is considered normal.
- Bruising easily. Seriously I wake up and can find new bruises from when I turned over too roughly!
- Unstable joints - The joints mostly affected by this is my hips, knees and ankles. When walking it feels like I'm a puppet, the joints wobble. Stairs are a nightmare! I feel like I'm vibrating!
- Crunch, Crunch, Crack! - This is something I say often! My body clicks and cracks so much that I have to make sure nothing dislocated or subluxed! (Very prone to these!)
- Prone to sprains/strains - I once sprained my wrist just getting dressed. When I used to do Roller Derby, a fall could mean I have to wear a support for a week or so!
- Pain - I miss the days when paracetamol was worth buying. Now I have to get prescribed painkillers. Last time I tried to work through the pain I was bed bound for a week and couldn't move my back and lower half of my body without being close to tears.
- I see fire! - Sorry, had to slip an Ed Sheeran reference! When my joints decide to become inflammed, I feel like my joints are on fire. Unfortunately I can't take anti-inflammatorys so I have to make do with Ibuprofen gel instead.
- Shoulder popping! - As mentioned previously, I can dislocate or sublux (partially dislocate) joints pretty easy. I always thought I had never dislocated a bone, till I just had got used to doing it and cracking it back into place!
- Asthma - I was diagnosed with this quite young, though as I never realised my other symptoms were not normal, the connection was never made. It has now been realised it is due to my EDS. Also, last year I came close to dying due to contracting pneumonia...Not long after doctors realised my body was...well....weaker than it should be.
- Flat footed - Now many people can be flat footed and it's not a problem...however what is common with EDS type 3 is the fact that, when the foot is lifted off the ground, the arch in the foot remains. It is the hypermobility of the ankles which allows the foot to turn and appear completely flat.
- Bad memory - This is partially due to the type of dsylexia I have, but also some studies have found that EDS can cause the neurological connections to play up when it comes to memory.
- Bendy - Pretty obvious here, I can move my joints further than most people. Ironically, it causes stiffness. Also I am much more comfortable sat/stood/lay in weird positions, my friends find it quite amusing! Doctor hates me doing it...I can't help that it hurts less to do it!
- Physio - I class this as a symptom...When the physiotherapist knows you by name without looking at your file...and the first question is "so what are we focusing on today" when you walk into the office...you know you have weak joints.
I know there are many zebras out there that suffer so much more than I do, and if you are a fellow spoonie with a blog, feel free to leave a link to your blog in the comments to explain further.
I have only began to feel the full effects of this illness in the past few years, so I'm still getting used to living with it.
I feel really uncomfortable knowing I am classed as disabled to society. I don't feel disabled, I just feel tired, in pain and bendy. To me it's all I know, I went through most my life experiencing these symptoms. However, as I was melodramatic as a child, the idea that something was wrong was brushed aside and I was labelled as "lazy". I will be the first to admit I was a dramatic child, but now I have something to explain why I was seen that way. A lot of the time I would still get up, go to school, do my dance classes and go out to play with my friends whilst feeling tired.
I used to love going clubbing. Dancing around without a care in the world. Since my joints have got worse I am much happier sitting with a glass of wine and just wiggling in my seat. It's why I much prefer having drinks at a friends house. We all sit, socialise and listen to music without me being seen as the "boring" one.
If you have a friend with EDS or another chronic illness, let me give you a few pointers from my point of view:
- Acting like you don't believe us is really soul crushing. The best thing you can do is acknowledge what we say.
- If we cancel plans last minute, know it upsets us too. It's nothing personal...we just don't have the spoons.
- Also, if we cancel plans to go out, don't feel like we are pushing you away. You can always make plans to come see us when you are free.
- We feel like burdens. So when we say "no it's okay" understand we may feel embarrassed at the attention you are giving us for wanting to leave or sit down for a while.
- We understand your frustration...Just bear in mind we are frustrated at ourselves also.
- It is hard to prepare for a big event. We know it may be mandatory...however we have no control of our body if it decides to flare up. Majority of the time we slap on a smile and just try and make it through the day.
- If we tell you we're in pain, understand it must be really unbearable. We are in pain a lot of the time. To declare it means it has reached a new level.
- Sometimes we want to talk about it, sometimes we wish to pretend we don't even know what it is. Please don't accuse us of "moaning" or "complaining".
- "Small bladder" - This made so much sense when I found this out. Many of us are prone to digestive problems...I personally pee a lot more than is considered normal! On a night out, if you can't find me, I'm most likely in the ladies room!
Many of us suffer from mental health issues due to physical health issues we cannot control.
EDS is a progressive illness which may put me in a wheelchair within 10 years.
If I ever have to go for anaesthetic the chances are I will have a higher tolerance and will still feel pain.
If I ever have children, I am a high risk of complications.
I could pass on this illness to my children.
If I break/damage myself, the chances are I will take longer than normal to heal.
But we have the silver lining still...
I have yet to meet a zebra who does not support equality.
We come to understand the importance of keeping good friends close.
The support system for zebras is fantastic - You can be so frustrated and just write a lot of swear words...and we just get it and send virtual spoons your way (Like sending love, but more useful to us!)
If you want a movie night in, we're the ones who are pros!
Usually, we have a great sense of humour! We have to!
I wish to keep this series of blogs going. I am happy to accept guest blogs regarding this subject, and I wish to set-up my own support network on twitter by utilising #pjsandpainkillers
But for the comments below - If you or a loved one suffers from EDS, what would you say would be the most entertaining or unbelievable injury you've had?
(I know injuries aren't exactly fun, but I look back at the time I sprained my wrist getting dressed and I just find it funny!)
You have to laugh sometimes!
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