On Severe ME….

This week is severe ME awareness week. I’ve never had severe ME and right now I would say I’m moderate – meaning I’m mostly housebound. I leave the house maybe once or twice a week for essential visits – i.e the doctor, the shops if I need to and that takes a lot out of me. I don’t work right now and when I was working from home it was brutal. But work like activities are done from a mixture of bed and desk, depending on the day and if I want to handwrite anything. So this is an outside perspective.

Severe ME is brutal and entirely distinguishable from the more mild forms. Some research even suggests that some people with ME will never get severe ME no matter how hard they try to push through but others are more predisposed to it.

Severe ME is being largely bedbound. It’s not fun. You may ask how people with severe ME spending all this time in bed. It’s not a lot of what you may expect. TV, books and work like activities. Instead it’s often laying in silence. Eye mask, ear defenders, a dark room. With nothing but your mind to keep you occupied. You can’t move and any movement feels like it’s draining you even further. You may have seizure like shakes, migraines, shooting pains throughout your body, numbness and pins and needles.

Even a shower or a visit from a friend or family member can give excruciating PENE (Post Exertional Neurological exhaustion) which lasts for a week.

You may need help to get to the bathroom or not be able to get to the bathroom at all.

In very severe ME you often need to be tube fed or reliant on TPN.

You have such a low activity threshold that just living can drain you further and cause deterioration. Especially if you aren’t in a quiet enough household or area. Or if your curtains don’t black out all light.

You may ask how you get severe ME. This is in one of two ways usually

1. You get a virus or another trigger and start out with severe ME

2. You push to hard – either on your own accord or all too often by pressure from doctors claiming you should push through the pain, or have inflexible graded exercise therapy. You listen because you too are ill informed about ME and you will try anything to get better.

Although some research suggests some people will never get severe ME and I think I’m in that category no one is “immune” as such and as a general rule of thumb pushing through your symptoms too much will result in deterioration.

This is a real biological illness and the most convincing examples of that are in severe ME. Lots of these patients aren’t depressed although I wouldn’t blame them if they were as it can be hard to maintain mental health with such a life limiting and misunderstood and often disrespected illness.

One doctor said to a friend “you get depressed and then you get deconditioned and end up bedbound”. Although for some this may be true this doesn’t reflect the majority of the ME population. You don’t end up bedbound because you decondition. You decondition because exertion worsens symptoms and sometimes it’s not even deconditioning. Your muscles just refuse to work at times. I’m there all too often. Waking up with paralytic exhaustion and often having drop attacks.

We need to help those with severe ME. Right now many of them are missing from the world, missing from medical care, missing from friends and family. We don’t know about the struggles they have and the help they need because many are too ill to advocate for it.

It’s never enough

I always feel like I’m not enough. Not good enough, not smart enough, not trying enough.

Sometimes it’s in the back of my mind other times, if something triggers this.

Someone doing something amazing whilst I feel I’m sitting there stagnant or going backwards.

Rejection upon rejection upon rejection.

Waiting for emails. Emails of yet more rejections or hopefully good news.

Scrolling down linkedin or legal insta to find everyone getting training contract offers when you have nothing.

Everyone else having confidence to start various initiatives and you not.

Because who would care? Who would help?

People say you don’t network in the right way.

You can’t maintain relationships with people because you pushed all your friends away in the second year of university when you had zero mental health.

You are just simply not enough.

I don’t know how much of this is my poor self esteem as a result of never feeling heard as a child. At school, by my family. A result of emotional neglect/abuse. Or how much of it is a result of being chronically ill and when your chronically ill society expects you to be extroadinary.

To reach goals that most people don’t reach and be an inspiration.

If you don’t your just lazy. A burden on everyone.

It doesn’t help that I genuinely want to reach said goals.

Personally I think it’s a combination of the two causing my feelings of never enough.

I already push myself so much to do things and to function and to live life as close to how I want it as possible that when I see other people meeting standards that I expect of myself I feel like I’m not enough. People say I should do more or atleast insinuate it but there is no way I can fit more in.

I need to try and climb as it’s the only exercise I can tolerate and being conditioned makes a massive difference to my pain levels. It also gives me life.

I’m leaving my job but up until said point I am having to drag myself through 8 hours a day. 8 hours where the pressure in my head feels unbearable, Where my vision will start to fade on sitting up and where the brain fog is so thick that I don’t really trust myself.

I’m doing law things alongside.

Moving home to try and take care of my health before I start my LPC.

I can’t fit more in.

I find it funny that we are expected to be inspiarations but if a healthy person got my symptoms for a week it’s okay for them to do the bare minimum.

Why is this? Why has society developed in this f*cked up abelist way? I know I’m not the only one who suffers because of it, so if you do to you are not alone and you are enough.