What does having ME mean to you?

I

Invisible Woman

Senior Member (Voting Rights)
We've been discussing the name here:

https://www.s4me.info/threads/me-se...nothing-to-do-with-diagnostic-criteria.13858/

And discussing the term "fatigue" here:
https://www.s4me.info/threads/break...egic-problem-to-beat.13787/page-4#post-240657

Rather than focus on the name and what is, or is not, a core symptom I thought it might be useful to discuss what having the diagnosis ME or CFS means to the patient.

If you were given the opportunity (& were able) to give key information about what having the diagnosis means to you and to state what you think other people should know about it what would you say?
 
One thing I would like other people to know is that it could happen it them. From 7-70 no one is immune.

Even if they didn't get it and someone in their family did, life could change drastically quite quickly.

Many who can afford to take out insurance policies, or have policies with their mortgages, assuming they will pay out when a devastating disease strikes. They are likely to face an uphill battle to get payment because of the misinformation that "most" people see significant improvement or recover in time and generally downplaying the consequences of developing ME.

This misinformation about the nature and duration of ME will also make the struggle to claim benefits much harder than they think.

So whether it's themselves, their partner whose wage is essential to the household, or a dependent child who might need full time care, life will suddenly be very different.
 
ME means absurdity to me. When I became sick, everything that I believed about healthcare crumbled down. You're sick but not considered deserving of care, you're thought to be causing your own fate... All the shit I discovered about the BPS crowd (their crazy theories, the fact that their rotten methodology could take place, and that on top of it, it could be recognised by the medical system...) made me feel like I was entering a kafkaiesque world I had until then totaly ignored.
 
The amount of rest that is required for a ME patient.

At severe there is not enough rest in a day. At moderate you need to rest most of the day to keep from deteriorating to severe again and to manage staying at moderate level. At a milder level, enormous amounts of rest are still required to keep from deteriorating to severer levels.
 
I don`t know if I have the words to describe how physically and psychologically fucked up it is

There is a disconnect between "me", i.e the cerebrum, and the function of the rest of the body that is hard to describe.

I feel like a ghost in my own life, a lot

That`s not really the worst part though

The wort part is that without intervention u go through this groundhog day for years

And u don`t know if u will ever be "rewarded" for hanging on
 
Having ME to me is a kaleidoscope of frustrations. Being annoyed about feeling lucky that I can do the things I manage to do. Being able to spend time with people but how crap that makes me feel afterwards. Being retired from work yet just organising my life to try to minimise PEM feels like a full time job. Having being a bookworm for 45+years yet I only managed to read 3 books last year. Being the one on the WhatsApp group whose highlight of the week was the neighbours coming round for a cuppa.
 
It means less and more to me. Less achievement, less experience, less earnings, less respect, just less life overall. More disbelief, more loss, more grief, more contempt, more regret about what I have been, and could have been, able to make of my life.
 
A big part of it for me is being very disabled but not perceived as needing help. Which means that almost nothing in my life gets done. Having dental problems and not making it to the dentist. Spending six months to get something done that I’d do in a day when I was well, and feeling like my whole existence is on hold in the meantime. Even if you get help, being dependent on others is never nearly as effective as just doing it yourself. People don’t really realise how many seemingly insignificant things they do for themselves in a day, but when I can’t do them anymore it feels like my entire life is just a list of things that never gets done.
 
ME is not being able to do the most basic things that everyone else takes for granted. I want to be able to brush my teeth and have a bath every day, I want to be able to leave the house every day by myself and walk on my feet outside the house. I want to hold my boyfriends hand when we walk together and go to the park and sit in a restaurant with all that noise and light and just eat, and do everything I used to do, and want to do, but I can’t do any of it. None of it.
 
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