I want to apologise for my absence. I took a break from writing here because I was attacked over social media about this blog by some people who I can only describe as vicious and desperate people; claiming that it was offensive and that I couldn't possibly have ME/CFS. Apparently I'm patronising and just not unwell as I can work (part time) and attend the gym.
The people that attacked me completely shattered my confidence with my illness. I believed I was really getting a good handle on my ME/CFS; joining the gym and being able to attend, volunteer, attend college once a week and work 16 hours a week... that's something I thought I should be celebrating, I was doing incredibly well. Instead of being cheered on by fellow sufferers, I was penalised and berated for the things I was doing. I was exhausted and things hurt an awful lot, but I was managing with the support of my other half. I had already quit college and volunteering because I couldn't handle doing so much at once, but since those people spoke to me I haven't attended the gym or posted about my illness. Something that some supporters have scolded me for as they believed that the gym was helping me, almost boosting my energy and happiness - even just for short bursts. Alongside this, speaking about my illness and my achievements and downfalls are so far the only "therapy" that works for me. I am uncomfortable talking to people about my illness (not in an informative way, just in a... I'm struggling to cope with it kind of way); and so I use this as my way of reaching out, informing and educating others and it's my own tool for coping.
Too Long, Didn't Read?
I was attacked for being ill but doing great; I suffered for it, but I'm back.
Although I'm back, it's not all good news. I'm struggling with my MECFS at the moment. I'm tired and more than anything my ribs are hurting. I think I've got slipping ribs, but since it's nigh on impossible for me to get into the doctors recently, I'm making do and just dealing with it. It's agonising but, hey ho...
I work odd hours, some shifts start at 6:30/6:45am and although I usually only work 3-6 hours (up to 16 hours, usually) but the place closes at 11pm. So the hours are a little unpredictable and that means I don't have a regular sleep schedule, or weekends. I get a day off, back in for a few days and then another day off. The past couple of weeks we've been given a lot of overtime (up to about 27 hours) and I've been so so proud that I've managed to do those hours without much grief from my body, but it is exhausting and it's not where I want to be in life at all.
I never wanted to work in retail, I wanted to be out there changing lives, nursing, medicine, emergency response, a caring role. OR, something in entertainment, but my confidence is squished and I never had the chance to practice theatre. I always dreamed of being on set, working awesome roles and being able to use my hefty pay package to do good. But that was just a dream. I'm worried that at 20 I'm letting life pass me by due to illness and fear of doing something.
I'm considering looking for another job, less money, further distance but more regular hours as I think that would benefit me healthwise. I could really do with some routine in my life compared to being all over the show... preferably an office job or something that involves a lot less lifting.
On a positive note, my other half had a work review today and they're happy with him and lots of good stuff came from that. I'm super proud of him, he's my rock through everything.
That's me for now anyways, I'm not working tomorrow but I could do with a decent night sleep since I got about 4 hours last night thanks to a minor breakdown about being unwell and stuck in a rut. More to come another time.
Again, sorry for the lack of updates and I hope I'm forgiven and that all you fellow sufferers are hanging on in there, don't let anyone tell you that your illness isn't hard to deal with, we all have ups and downs, different disabilities in different ways, but the important thing to remember is that our illnesses are HARD, they are exhausting and difficult to deal with. Don't let anyone belittle your achievements, if that's getting a new job, or managing to wash yourself on your own that day, it is an achievement and it is fantastic, don't let anyone tell you otherwise.
It's not about what you can't do, it's about what you can do - no matter how small it might seem to another.
