How it Feels to be Left off The List

I have ME/CFS. A poorly understood neuroimmune condition that is often triggered by and exacerbated by a virus. With ME we are entitled to a flu vaccine. We have known we are vulnerable but not extremely vulnerable to COVID-19 since the start of this pandemic. Yet many people with ME are not being put in group six or are having to contact MPs, CCG’s and Journalists to get it done because despite letter templates from the ME Association and Action for ME. Despite other ME charities saying we are vulnerable and should be in group six we are an awkward grey area.

In Wales I’d be in group six. In Scotland I’d be in group six. But England. It’s up to our GP’s. ME unaware GP’s. GP’s under a lot of pressure because there are many people enquring about the vaccine and probably rightfully. A multitude of people have been left off the list.

I am one of those people. Despite ME/CFS, EDS,Fibromialga, Chronic Migraines, Occipital Neuralgia, suspected Endometriosis and suspected POTS (largely controlled by migraine meds) my surgery won’t put me into group six. This is despite a bad reaction to potentially having the virus in March. Going from being able to work and climb. Yes I was barely holding it together but I was there. In the office. On the wall. Climbing multiple V3s-4s a session and climbing 6C on a rope, often ticking off multiple 6Bs and 6B+’s.

I went from that. to being unable to walk around my flat without crutches until I started d-ribose. To barely being eyes open and pretending to be functional, pretending to hold it together for 8 hours a day. In a dark room. Horizontal. Suddenly sleeping till midday without an alarm (which I have never done). Increased nausea, my diet has changed drastically and although initially caused weight loss has since caused weight gain since I’ve figured out how to keep my digestive system as happy as possible. Fatigue, head pressure, migraines, brain fog. Muscle weakness. Increased numbness and tingling. More issues with balance and co-ordination. Forgetting how to walk more often. Spilling coffee because god forbid could I ever carry a cup straight. Missing my mouth when I drink. I started developing seemingly random allergies. KT tape, adhesive heat pads, plasters, make up wipes. Some currently unidentified allergies. Anti-histimines have become a staple. My skin manifestations of EDS have worsened. Healing slower, marking more. My hands currently look like I’ve had a reaction to the pavement. A pavement that not much weight went onto.

I’m still no where near where I was this time last year and have a neurology appointment in may to deal with neuro stuff that started getting worse after the virus. The GP who referred me thinks it could me MS but right now no one knows. Is it EDS related, is it MS or am I just going to end up with being told it’s ME or Functional Neurological Disorder?

My chronically sick body reacted badly. This is standard for viruses with ME. I got freshers flu in my second year of uni and was on a downhill trend from there. Even colds can make us worse for a few weeks.

Yet when I sent an email using the ME Association template asking to be put in group six, I was asked to call to book a GP appointment. At which point I was dismissed. And not nicely either. It was made out as if the setback from ME wasn’t actually that bad, that if they said yes to me they would have to say yes to people with depression. (Severe mental health issues are in fact a reason to put someone into group six). Told people with asthma aren’t in group six so I definitely shouldn’t be (again people with asthma shouldn’t be left out but here we are). I was made to feel like a burden. Like a waste of time. Like I was making it all up.

I came off of the phone in tears. I should be offered the vaccine by the end of July but what if that’s too late. With the world opening up again and people going in and out more. I live with four other people. My healthy parents will be vaccinated before me and hopefully that’ll protect me a little but my brothers are children and so won’t be. It’s the knowledge that I either miss out or put myself at risk. The knowledge that once we don’t have to social distance at the climbing wall it may not be safe for me. The theatre tickets in July that are already bought so I have to go. But if masks are no longer needed in July will I be safe in central london?

The fear of another serious set back when yes I’m lucky to be as functional as I am but I’m here pushing through extreme symptoms because I feel some external pressure too. It can’t get much worse otherwise I’ll be unable to finish my masters.

It worryingly seems like the younger of us are the ones having this issue. It makes no sense why even if not group six we can’t just be put somewhere higher than group 12. We are at risk. We know we are. But when things are at the doctors discretion and you meet a bad egg or an egg that doesn’t understand your conditions there’s not much you can do other than find an egg who understands. Most of us don’t have that energy. Or go to our MP’s and CCG’s. Again most of us have lives we’re desperately trying to hold together. I definitely don’t have that energy right now. Physically or emotionally.

I feel hurt. I feel scared. I feel forgotten. I feel alone in this and like no one will understand because the media isn’t shouting about it. Instead we have government propaganda suggesting all vulnerable people will be vaccinated by April.

That’s not true. So many are left off the list.

I am one of them.

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