I used to be a very sporty child, dancing up to 7 hours a day + always on the go. In November 2008, age 14, I suddenly fell ill with tiredness + nausea, like nothing anyone knew. A year later I got my diagnosis of ME, after doctors putting it down to depression + refusing to look at me because I was 'too thin', and in that time my weight had plummeted. I remember crawling up the stairs because I was so exhausted, and I couldn't get out of bed. I was having 4 hour long panic attacks daily + my anxiety was terrible. I started having to use a wheelchair as I couldn't walk and then I had a bad relapse. This made me suffer with paralysis in my arms which lasted for a week. I now couldn't feed myself, brush my teeth, dress/bath myself or even sit up in bed. It was a scary time for everyone. I remember my physio holding me as I shook standing up for a whole 10 seconds for the first time in months, then taking my first steps with my crutches. From around 2013 I started to slowly improve and here I am today. Still need the wheelchair most times outdoors, can walk a short distance, I have more independence + still fighting every day. I'm SO much better than I was and I'm so grateful for it! Still quite a way to go in my story though..
I have a pretty impressive medical list, but ME and EDS are my main troubles ;) I also suffer from vasovagal syncope, heart murmur, gastritis, duodenitis, migraine, asthma, stomach bleeding (which thankfully has stopped), hiatis hernia and lots of things secondary to ME and my medication
Symptoms of ME which I suffer / have suffered from:
Exhaustion (I'm not talking 'I'm tired let's go to bed' exhaustion, I'm talking about crippling 'I can't move' exhaustion. They say having ME is like having to drag an adult around on your back everywhere..), pain (joints, nerves, muscle, you name it..), light sensitivity, sound sensitivity, paralysis, numbness, brainfog, loss of sight, spasms, dizziness, 'payback', memory + concentration problems, enlarged glands, headaches, recurrent infections, palpitations, sleep problems, anxiety, depression, muscle weakness, digestive problems, inability to control body temperature, bad balance, nausea..
Probably a lot more which I just can't remember right now. I still suffer from all these symptoms bar loosing my eyesight regularly.
Symptoms of EDS I suffer from
Many of the symptoms overlap ME symptoms, but the extra ones I suffer from are being very hypermobile, joint instability (many sublaxes and dislocations daily), easy bruising and gastrointestinal dysfunction.
I guess these are easier for me to show you than ME symptoms! Here's a photo of my current bruises, with no filter, on a small portion of my long legs. My legs bruise ridiculously easy, so bad It happens when I kneel down.
Im hypermobile just about everywhere. The worst of which is my hands but that was hard to take a photo with by myself. So instead you can enjoy my elbows which bend a bit too far.
So there's my symptoms. Everyone with ME is different so what I suffer from someone else might not, but it's quite an impressive amount to be dealing with on a daily basis. My next post will be on treatment which I'm sure you'll enjoy as it involved photos of me getting needles stuck in me ;)
Kate x
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