Today is day 4 of a crash.
On Wednesday morning I had my usual care call, got washed and dressed, ready to go out but then a wave of nausea and exhaustion hit me and I needed to lie down immediately.
I have been here ever since.
The light has been burning my eyes and sending muscle spasms through my forehead like a migraine, my muscles and joints have been extra painful, everything is an effort and seems in slow motion. I have only just been able to put my glasses back on and use my dimmed phone.
The mental health side of having a crash is the worst for me. My family seem oblivious. I remain one more mouth to feed and water but needing to be fed instead of having food left for me.
At first I kept the care calls going after what happened last time I had a crash, but there is barely anything for them to do, so I have cancelled a few now for that reason. It seems silly to drag someone here just to feed me a bowl of cereal and empty my commode when my husband was about yesterday and today.
Moving is extremely painful, and I have been suffering with POTS again too. My heart rate was 169 yesterday when I sat up. Its scary having these Palpitations and then my heart racing so much from me just sitting up. I am hoping to have a shower tonight in my reclining shower chair to reduce the effects of POTS, plus make me feel cleaner.
The house life just seems to go on regardless though. The children have friends over, are at activities or at their friends houses (thankyou 🌹) and I am here, finding audio described tv programmes to listen to, playing games with Alexa and listening to quiet music, trying to keep my mind busy and out of the dark.
When I am already struggling with social care, adult and child, and feeling low anyway, having this crash isnt helping one bit. I feel like I want to escape from my own skin because the pains are so intense. Ironically I was supposed to be at a pain clinic appointment yesterday, but was in a crash so couldnt go.
Not only is it painful and the effort to do anything, inluding talking and eating, is huge, but also boring.
I am struggling so much again to remain positive.
This isn't a pity party post, it is reality. I wanted to have a blog of how it is to live or survive with these illnesses, good and bad. I haven't been on here as much as I had planned, but I am here now.
I even asked alexa what the point was earlier and she... A machine.... Directed me to the samaritans phone number
(Well done amazon👍)
Seriously though, going through an ME crash, when you have no idea how long it will last or what long lasting changes it might leave with you, is extremely lonely and difficult. If you have friends or family with ME, check in on them, check how they are doing.
I haven't replied for days because of how I have been, but I know I have messages there and my husband has fielded phone calls too.
For now I hope the seesaw keeps swaying the right way
#ME #therealME #doyouseeME #crash #flares #chronicpain #chronicfatigue #chronicillness #ME #CFS #hiddendisability #invisibleillness #tiredgirl #spoonie #spoonielife #disabledlife #wheelchairlife #PEM #fibromyalgia #whatsthepoint #mentalhealth #samaritans #emotionalhealth
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