It’s nearing the end of all the awareness months and just to get that lil bit more awareness out I thought I’d focus on the not just fatigue parts of ME and the not just joints part of H-eds. Now I do want to add a disclaimer that these are my experiences of symptoms. Not everybody’s. I have a mild case of EDS and co so understandably my experiences are different to someone with a more severe case. My ME is here there and everywhere in severity although my new supplements are getting me out of the horrific flare I’ve been in. We love D-ribose. The taste no. Not collapsing multiple times a day, just trying to get to the bathroom yes. I’ve never been severe, or super severe though so although those symptoms have happened they’re not a constant.
That was way too long of an introduction! Lets get on with the content.
EDS is bladder pain, bladder discomfort. The more full your bladder is the harder it is to urinate. The pain feels like it’s growing by the minute and it’s all consuming. You get frequent infections.
It’s nausea, food just not feeling like it digests. Even drinking water can cause nausea and a sort of sloshy feeling that a healthy body would only get if they drank too much. I personally find squash and diet coke kinder to my stomach than water, no idea why that is! It’s spending money on countless anti-nausea remedies and OTC medication, finding often they are of limited effect. GPs are reluctant to offer anti-emetic prescriptions in the UK.
It’s bloating, retaining so much water that your painfully bloated you feel and look pregnant and go up a clothes size or two on bloat alone.
It’s reflux, sometimes so bad that it keeps you up at night.
ME is pain, never ending pain. Frequent migraines, light sensitivity which not only causes pain but dizziness. Laying in a bedroom with the curtains seldom fully open really gets quite depressing.
It’s unbearable head and neck pressure. It can be kind of eased by hanging upside down at least for me but that’s not sustainable for a long period of time.
It’s drop attacks, heart palpitations, breathing difficulties.
The brain fog that leaves you feeling stupid and can be really quite scary at times.
Cold extremities despite being in a heatwave and sweltering.
Blurry vision. I don’t think the list of ME symptoms ever ends I could write a book, but it’d be a boring book so I won’t. I hope you’ve all either learnt something from this list or if your unlucky enough to have these conditions yourself or in the process of being diagnosed that this somehow helps make sense of your symptoms and makes you feel less alone.