I haven’t written one of these for a while.
I haven’t felt able to write a spontaneous M.E-related blog that isn’t part of a wider campaign or doesn’t have a specific purpose. The world, and a big chunk of its residents, has got very serious and hardened. There seems to be very little light and shade, with opinions and standpoints being very left and right and black or white. The fun left the building in March 2020 but I’m bringing it back…… to Foggy HQ at least.
Since catching Covid19 in March 2020, I have found it particularly difficult to differentiate between M.E and Long Covid symptoms. My M.E experience had been pretty much the same for over a decade, fluctuations could be predicted down to the hour, sleep patterns were entirely predictable, and I had settled into my own personal M.E routine. I knew what was, and was not, within my limitations and I was able to plod on quite nicely in my own M.E-restricted life.
However, Long Covid has given me new symptoms that had never been part of my M.E experience. My ‘husky’ M.E voice was gone and I was now croaking like a frog. My slight breathlessness was replaced with gasping for breath. My suspected ‘Costocondritis’ from a few years before had now bred to include a whole family of ribs and connective tissues, my ribs now feel like they are being nibbled by tiny Piranha fish from the inside of my rib cage – the movement of breathing occasionally hurts. My lungs feel ‘full’….something I hadn’t experienced before, but all tests came back ‘all clear’. I get the rash, that I have had intermittently on the tops of my feet when I ‘only’ had M.E, on my face now I also have Long Covid. My joints ache like never before and I feel like the Ready Brek person, I had joint pain with my M.E but not hot joints. Earache/pressure in the ear that started this whole rollercoaster ride of M.E (Labyrinthitis) and has always been ‘weak’ is one of the rarely acknowledged but always there symptoms that no amount of steroid nasal spray seems to dissipate.
I have had more referrals and hospital appointments than I ever had with my M.E which I am both grateful for and slightly irritated by. Where was this level of concern when I got really sick in 2006?
To be clear, when I say I have new symptoms, I mean they are new to me. I need time to work out if they are new/worsened M.E symptoms or Klingons from other chronic illnesses that are desperately clinging on to my weary body.
The voice thing is a pain, any kind of exertion now means that I sound like Kermit at least 4-5 days a week, sometimes my voice ‘goes’ to the point of causing me to be mute. Not great when you record regular podcasts and Facebook/Instagram lives! Foggy is enjoying the peace and quiet in Foggy HQ though. It FEELS like my vocal cords are stretched, and taut, and as if they will snap if I don’t rest/stop talking. I wonder if this is due to the sensation of breathing in smoke from standing too close to a BBQ that I had during the acute phase of Covid19. That sensation felt as if my throat was ‘scorched’ and very dry. I saw the ENT Dr a couple of days ago and he stuck a camera up my nose and down my throat (NOT PLEASANT! It made both of my ears pop which was unexpected). My vocal cords are ‘fine’ and undamaged – whoop…but also not whoop….he could not explain what was going on. But he has referred me to Speech and Language Therapy – paws crossed they can help! NOTE: I have never been referred to Speech and Language therapy for any M.E speech-related issues – slurred speech anyone?! He also said my ear pressure is likely inflammation in my Eustachian tube , I can’t remember if he suggested treatment….I don’t think he did.
I’m now waiting for Rheumatology and Neurology referrals to transform into appointments – pixie-like with fairy dust!
Paws crossed these appointments can confirm my suspicions that my ‘Long Covid’ is in fact a few more M.E symptoms (add them to the pre-Covid19 list!), Ehler-Danlos Syndrome, and Mast Cell Activation Syndrome. I had traits of EDS and MCAS before 2020 but now I have the whole shebang (though still ‘mildly’ affected).
My fluctuation predictability and sleep pattern have gone out of the window, I think my body is still trying to get back to some kind of ‘routine’. PEM went weird for about a year but has now started behaving ‘normally’ again which is oddly reassuring. I feel like I am getting a bit of me and my M.E ‘normal’ back and that is a good feeling, weirdly. It’s what I know, the unknown is much scarier.
That’s it for now.
Love from Sally
and Foggy (OBVIOUSLY)
Few bits of info relating to fundraising –
Foggy and I would be grateful if you could recycle your old stamps to raise funds for us – read info here
Portsmouth Community Lottery – £25000 is top prize, weekly winners and ME Foggy Dog get 50p of every ticket sale (50%) Sign up here
Foggy and I have plans for 2022 and this fundraising will help to make sure those plans happen.