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.

LIGHT – The Documentary Film Review

CW: Talk of eating disorders.

As someone whose eating disorder got very tangled up with climbing I thought I’d do a little review of this documentary film because it’s important and needs speaking about.

Light is a documentary about eating disorders in climbing by Caroline Treadway.

It starts very relatably, atleast to my experience of eating disorders as a climber. The inner monologue of the guilt of eating too much and the thinking people are jealous when they say you should gain weight. That delusional monologue the disorder tells you to keep you holding on to it.

I honestly couldn’t find any negatives, I personally didn’t find it triggering (although as always be careful). I also think it was an accurate look at eating disorders and it wasn’t your average rich white girls documentary’s and did highlight on eating disorders among men.

So here are the highly relatable moments I found.

  • Feeling like water over the rock
  • Your mind being fixated on when am I going to climb, what am I going to eat
  • Wanting to be the best
  • The success feeling good
  • Not liking climbing – My eating disorder turned climbing into a source of stress for me for a few years. I ended up stopping climbing due to my physical health and it was a 4 year break (I was climbing 2-4 times a year) and meeting some amazing women that allowed me to fall in love with it.

And the positive educational moments

  • The most common thing for a person with an eating fisorder to say is I’m fine – this honestly goes to people with many conditions. The standard I’m fine when actually the world is falling apart. If your friend or family member starts saying this often and your concerned don’t be too probing but be gentle, be kind and make them feel like they can open up to you without judgement when ready.
  • The comparison – people with eating disorders or often perfectionist and often compare themselves to others in their eating disorder and life. Even when not an elite athlete. We are constantly measuring our self worth against the success of other people.
  • Diet culture – It’s hard these days to know is it an eating disorder or is it just normal. Even more so in any sports! The film highlighted this point very well.
  • Talked about male eating disorders and how these are likely to me missed because of stigma
  • Talks about the effect on the body and mind
  • Recognition of the fact that no matter how recovered you are the eating disorder will always be there in the back of your mind and you always have to keep check on it and know your limits to avoid relapse.

And finally, I really liked how it ended positively. Positive messages of recovery but awareness of the difficulty and how many have to go it alone.

If you haven’t watched it already it is available on youtube and definitely worth a watch!

A week in my life in Lockdown (ft mental health and chronic illness)

Monday

I focused down on trying to get my mandatory uni work done for the week so I could focus in on revision and getting ahead on prep for the rest of the week. I tried to ground myself with worship music. Anything that takes the edge off the depression is good. I had stage one of my autism assessment, which I got really anxious about but came out positively. Confirming I am likely autistic and having arranged a full assessment. My bank account isn’t happy but it’s a matter I need closure on. I skipped my physio exercises which I was going to do whilst running a bath because I was too depressed. Sometimes that depression paralysis just gets you and takes you. I had a bath, watched spinning out, planned my week and then stayed up a little too late doing a little research for my Case Study project on a subject I’m really passionate about.

Tuesday

I got up early as I had a meeting and the dog has taken to being particularly needy in the mornings. I came out of the meeting positive and glad that I have a resource to go to for any career related questions. Sometimes you forget how important social interaction is and maybe that’s because I’m probably autistic and some social interaction is very draining. But I was actually energised and positive coming out of it until the high crashed and the depression swarmed over me again. My pain was bad and muscles tight from skipping physio and productivity was difficult. Sometimes I just feel like I’m drowning and there’s no way out. More worship music to ground. Helped but still no focus.

Wednesday

No wifi, no laptop. Tried to study without and didn’t get as far as I would have liked. I went for a walk/run and embaressed myself by failing to traverse a kids traverse wall but the slippy muddy trainers and holds + the dog in one arm made it a challenge. It gave me so much serotonin though so watch me embarrass myself in a kids playpark with a secondhand pair of climbing shoes. Muddy trainers+muddy holds are hard! And then more tears the feeling of having another barrier stacked up against you when you already face so many is hard!

Thursday

More tears. Family being insensitive and not realising how much I hurt. We do love it. I stupidy went on another walk and wasted time. Yeah it’s good to help keep my muscles loose and not sore but already feeling so behind that two hours from driving time and tesco + the walk felt unjustified. This is why I don’t go out with my family. I had a therapy assessment and told my depression is moderately severe. It was hard but hopefully I’ll be able to get some support soon and start feeling better.

Friday

Payback but having to push through. Unable to see properly, feel legs, pressure headache worse than usual. Went from despairingly low to hyper. Spent a few hours doubled up on the floor with ovulation pain. Had a dance round my room in a hyper moment. Pain came back, had a bath to ease it a little because even co-codomal wouldn’t touch it and did some volunteering.

Saturday

Endo is a bitch ft more payback and lots of drop attacks. I started some negotiation prep after revising and practicing my assessment.

Sunday

Bladder flares, endo flares idk what but it felt like something was pressing down on my pelvis and everything hurt. My bod is not a fun bod sometimes. I did more revision and practice for my assessment. I started spinning out all over again because Justin and Kat’s love gives me serotonin, Dasha is queen and Carol is a bitch but her workwear is goals and her comments sometimes make me laugh. I actually felt pretty good mentally on Sunday, which was refreshing.