Thread by @MEwarrior_au

This👇tweet’s in response to a screenshot in 1 of @keithgeraghty’s tweets. It set off a thread where I laid my soul bare hoping those in power, whether doctors,psychiatrists,psychologists, politicians,or whoever, would finally see it & acknowledge our reality.
#ME #LongCovid 1/18

https://twitter.com/mewarrior_au/status/1475036863190630400

For the first time in years, apart from drive-bys, my husband took me to the beach yesterday. I FORCED myself to walk to the water as it was so inviting on a hot evening. I swam a few strokes, then just floated. I could hardly make it out of the water & up onto the sand…

2/18

…I was dizzy & stumbling, lurching sideways trying not to fall over, before collapsing onto my towel. I was breathless, my heart rate had skyrocketed, & my vision was blurred & distorted. I knew as soon as I left the car & my feet touched the sand that I’d really pay for…

3/18

…this later. But at that moment,as I floated in the water on Christmas Day for the first time in years,I didn’t care about the payback. At that moment, all I could hear was my own breathing, & it was MAGIC!

Then my thoughts turned to the🦈that could be around so I got out.
4/18

Somehow, we made it off the sand, & my husband brought the car to me as I sat (very wobbly) on a bollard. It was pure willpower & adrenaline that stopped me from collapsing.

I’ve not left my bed since. There is no energy except to visit the bathroom, & even that is a…

5/18

…mammoth effort. The pain that filled my whole body last night was extreme. Burning, like poison running through my veins, an aching so deep it seemed every cell & even my bones were affected. My brain was on fire & I’m surprised it didn’t explode out of my skull. There…

6/18

…was no sleep til daylight. I was smothered in magnesium oil, which helped a little (but not that much),didn’t even bother with painkillers because they never even touch this type of whole body agony, & managed a couple of hours of broken sleep. I was woken by my husband…

7/18

…because I was breathing weirdly, struggling for breath, & he was worried. He’d normally never wake me when sleeping as he knows how important it is for me, but the worry overcame the fear of me being upset for being woken. What he didn’t know was that just before being…

8/18

…woken, I was dreaming that I was in an aircraft & couldn’t breath. I remember that in the dream I began panicking & struggling for breath. I didn’t know that it was real, & that my husband woke me when he saw this, & me begin thrashing around in my sleep. There was so…

9/18

…much mucous in my throat & oesophagus I really was struggling to breathe. I was having an asthma attack in my sleep,but because I thought it was a dream, I didn’t wake myself up. This whole episode was very sobering,& I was so thankful that my husband had kept checking…

10/18

…on me. Would I have woken up on my own? I have no idea. I hope so!

All day today I’ve been in bed, under a ceiling fan, with no energy; the pain & awful feeling of being SO unwell you don’t know how you’ll bear it, cannot be put into words. How does one even describe…

11/18

…the endless symptoms? I can’t think of words to describe the all-encompassing awfulness of how I feel, how #ME people feel when they’ve pushed themselves too much.

I’m still in awe I managed to have that magical few moments in the water, & got home without passing…

12/18

…out; collapsing in a heap on the sand. I’m still amazed I remained upright long enough to make it home again.

I guess this will be my last swim, unless a miracle happens, & treatments or a cure are found for #MyalgicEncephalomyelitis.

Yet when I show you the photos…

13/18

…you will understand why I pushed myself to experience this once again, on a beach my children (now adults) swam at. All 3 did their swimming lessons here. I used to walk for ages as the beach is endless, & I used to run along the sand with ease when fit & healthy. We…

14/18

…loved to skim the round rocks found amongst the sand, & we still have such wonderful memories of many hours spent there all those years ago. Before #ME stole my life.

If you managed to read this far,& don’t know about #ME or #LongCovid, please educate yourself. Please…

15/18

..look up how both debilitating conditions affect the lives of those who must exist with them. Know that every moment is a struggle beyond words, for them, their loved ones, their carers,their families.

There are millions of us. Our disease has been stigmatised & gaslit…

16/18

…for decades. Those who suffer with #ME have been ignored for decades,& now those that have power want to do the same to those who are suffering terribly from #LongCovid.

PLEASE don’t let this happen. Able bodied people, please stand up & fight for us, because we are…

17/18

…too ill to fight for ourselves. There are those in the world who want to keep us hidden away, labelled as malingerers with psychosomatic symptoms, or anxiety, which is SO untrue. Our symptoms are REAL, & now research is proving that.

PLEASE help us! 🙏😪

#ME #LongCovid

18/18

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