YES, I've just managed to work eight days in a row.
NO my ME isn't 'cured' or 'fake'
I think I can be the one to say that people go through the good and the bad times with ME, I sure have experienced it all.
Working this week has been the most I've done in years, the first time in years I've felt normal and with it. Everyone deserves to feel like that for any amount of time.
What people don't understand is the sacrifices you have to make to be able to attempt to feel 'normal'
I don't go out in the evenings, I'm almost always in bed by 8 to get at least 10 hours sleep and lots of rest time, I have to say no to some things, because I know I'm then doing something the next day which I need energy for, I may as well have my wheat bag glued to me as I always am warming it up and applying it to whatever part of my body needs most. That is not normal for a twenty year old really, is it?
That has been me every single night for the past week, I have put on my smiles and when I've done my hours, I get home and completely crash. Where as others would be able to get in and then carry on doing things, tidying, watching TV, whatever.
Some of you may be thinking, well that's not fun, working and crashing? Well for me - it's going to lead to where I want to/need to get in my career, I am determined as well as motivated to get to where I want, get the future that I've always dreamed of. If I pull it off, I won't have to work a 9-5 day job and I will be able to enjoy life as well as rest. But I believe there is a time and place for everything - that will be then, this is now. I'm working hard to balance, it doesn't always work but I'm trying.
I will be the first person to tell you that ME is awful and depressing and life changing, but I am also on the quest to find ways round this awful illness and control it.
Everyone deserves the life they love.
Describes perfectly the reality of living with M.E. But what comes over throughout is your determination and positivity :-)
ReplyDeleteAs someone who has been living to work for a number of years - be careful. That was my life, I crashed. And I am now trying to rebuild and negotiate with work so that I can actually have a work life balance.
ReplyDeleteIt is important. Its important for a healthy person let alone someone who has ME.
I know what its like to hold on and just scrape through each day just to be able to work. But you need to have time to be you as well.
We have to work so much harder and thats not always recognised. Find your balance and remember that you also need to keep reassessing that balance and your baseline levels.
Its hard.