Hello again from here. It is lovely to be writing a little again. Today the letter of ‘MEcfs Street is ~ Aaaaaaggh’!! Seriously though, thank you Sesame Street for the many cheery episodes in my children’s youth. Is that a tautology?
Injections at Home
As usual, I digress. Back to the topic in question. As a person homebound with the condition MEcfs, I am fortunate that through the benevolence of more than one Neurology Consultant, Doctor and Practice Nurse, I receive regular B12 injections at home via Community Nursing. This didn’t just happen, it has taken negotiation, perseverance and at times sheer dogged belligerence. All this part of managing a long term condition. Sounds sensible.
Understanding of MEcfs
One of the more baffling parts of this arrangement, however, is discovering how many still have little to no knowledge of MEcfs – Myalgic Encephalomyelitis. Also referred to as Chronic Fatigue Syndrome for the uninitiated. I mean in fairness who would wish to be!
This week was a case in point. Absolutely lovely nurse, but my situation seemed to be weighed up on my appearance. They were lucky, as the day prior to them visiting was my – wait for it – ‘shower day‘. So basically my hair is clean etc and I don’t look like a sweaty character from a more gritty Jane Austen adaptation. (I prefer the shiny ones!) I have had the condition for 20 years, and understanding doesn’t seem to improve. I was asked, probably for the 135th time (I try to be exact, lol) ‘why do I look so normal‘ erm ‘what is MEcfs’?
Repeated Explanation
Well, always a tricky one. Hopefully you’re not expecting to be anywhere today? Friendly smile, whilst inwardly collapsing. So, my MEcfs brain searches for the salient points jammed in my rather unreliable library. Often access to these records is denied, today they were reasonably coherent, despite my ageing doggos earlier slipping episode. We won’t go there.
So I proceed to reel off the usual that I have off pat:
- Began in 2004
- Couldn’t make it the park bench on my son’s 7th Birthday. It all degenerated from there.
- We don’t holiday.
- Never seen where my children live or have lived or studied.
- Couldn’t attend their graduations.
- See my mother less than once a year.
- Couldn’t speak early in MEcfs.
- Couldn’t read for 7 years.
Enough? I did also touch on *PEM and MEcfs crashes. I hope it is helpful. Or do we need The Big Guns? As in – Paramedics; Ambulance trips to A&E; emergencies; losing our last home; months/years spent horizontal, difficulty eating; etcetera etcetera etcetera. I’m sure Yul Brynner wouldn’t have tolerated it. YAWN! I have had to email The Big Guns ‘to whom it may concern‘ in the past, quite recently. It becomes so boring. Why do I have to keep being reminded of The Big Guns. I don’t want to think about The Big Guns anymore. We all have limits.
It’s Draining
I am beginning to sound like a Not The Nine O’clock News sketch: ‘My aunt, who I live, with has a parrot called the South Sea Bubble. The most notable thing about the South Sea Bubble, was his enormous appetite’. You have to know it! Instead, perhaps I should consider a stash of MEcfs explainer leaflets from The ME Association. Ticket number 136 please (in nasal monotone). That would be a little sarci though, wouldn’t it?
So, is Comparison the Thief of Joy?
Or rather explanation on repeat. With hoops. Do I have to go to the lengths of explaining that I have left the permiter for the sum total of 2 hours this year, aided by my husband I might add? Both hours medically related. It’s now late April. And that my mum, to ensure I could celebrate with her, was brought here by family for her 90th Birthday and has been not too well since.
I should be left feeling relaxed and cared for. Which for the most part I am, I think, but whilst also too frequently being left feeling interrogated, disbelieved and exhausted. In fairness, the nurse today did apologise profusely for not knowing. And was genuinely horrified by what MEcfs does. But it often feels as if they have been sent with a set of prompts, like today. Waiting for the moment I am disarmed to present them. Prompts sent to break my resolve? How can that possibly be right or fair? In my home! On repeat.
Again, I don’t blame the nurse. She was lovely. Maybe, as in being a parent, I feel I am the only one experiencing all this. When in fact everyone else is too. All. The. Time. If you have and do, please do share.
Closing Thoughts
I appreciate everyone is under pressure. There are few exceptions. My husband as my primary carer, and working person aka taxpayer, is too. He gets on with it, fights my corner, gets annoyed on my behalf and does everything he can to enrich my life. Such as ordering a bench for the front garden so that I can sit with a cuppa on a milder day and wave at passing neighbours. Because they rarely see me. With one recently asking my husband, ‘had I gone away or left’. Atleast they noticed, especially as we are new in this little corner of our small town.
Such is the life of a pwME. We don’t ask for much. Just grace and understanding. Without the joy we carve out of the considerable limitations ME unapologetically thrusts upon us, being extinguished by means of comparison, and sadly lack of awareness.
The End
Much love
Have a blessed day⚘
*Glossary of terms:
PEM – Post Exertional Malaise
Crash – sudden depletion of energy. If you don’t lie down you will fall down (even if seated).
Join me on socials
- May – ME Awareness Month
- Thoughts of Family on the 80th Anniversary of VE Day
- Light Changes Everything
- Comparison – the Thief of Joy
- Happy Easter
Hope found in M.E. 
I completely empathize. But I also celebrate the gift you have in your husband. =)
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Thank you. Most definitely, I celebrate the gift of him. Thank you for stopping by. 🙂
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