I can’t be the only one who is feeling very anxious right now. I feel like I’m waiting for something yet I don’t know what.
I wish I could describe to you just what Brain Fog feels like, right now everything feels muggy, like I can’t see what it is but I know it is something I am doing or want to be doing. I can put something to watch on my IPad and be asleep within 10 minutes, yet I didn’t feel tired at all before or I can be searching for something to do a food order and get distracted but never go back to my food order. I have notes and reminders everywhere.
I can be watching something and tell Graham about it, only to find that we have already watched it. It’s the forgetting of words that has the biggest impact. I can be having a normal conversation and forget a word, it can be something as simple as bed yet I have lost that word from my vocabulary it’s gone and no matter how many things I point to or say things like you know what I mean. This has hit my confidence the hardest, after all how do you have a conversation with anyone face to face or over the telephone, because for them the line goes dead or I have this look of confused panic. It’s now so bad that I won’t pick up a telephone call unless it is absolutely necessary, I even ask for email as my preferred method of communication.
I suppose that when your body feels bad your head feels it too, it’s the lack of self esteem every time I pass a mirror, I don’t know this face looking back at me. I’m a mess. It’s been weeks since I last washed my hair as I just haven’t got the strength. I desperately need a hair cut as well as needing to dye it. I have more grey than brown and it looks awful. How do you feel good looking in the mirror when you know just how bad it is and you can’t do anything to change it.
I want to lose weight but how do you lose weigh when you eat maybe 4 meals a week and you can’t do any exercise . Exercise of any kind gives ME sufferers something called Post Exertional Malaise, it’s like the worst pain you have ever had after doing exercise but instead of the day or few days later, it hits you straight away and a lot worse. Something as simple as standing is too much for us.
I want to dye my hair and have it cut into a more manageable style, yet I can’t go to a salon and yes the box dye is in my bathroom all ready to be used, but I don’t have enough strength to be able to sit up straight long enough for the dye to work. That isn’t an exaggeration I can not sit up unaided for 5 minutes let alone how long the dye takes to work.
So I look a mess and I feel a mess, this absolutely destroys my self confidence as I don’t look and feel like me anymore. I am not going to pretend that I have a perfect relationship with the perfect man and I’m certainly not going to portray myself as some perfect princess. Marriage is hard for almost everybody, and if you put any illness or disability into that relationship you are going to have bad times. We have had our fair share of bad times and I will never understand how he can love me when I feel such a mess both inside and out.
I know people have it much worse and if I could change that I would. I want to do all I can to raise awareness of Myalgic Encephalomyelitis and how it affects people all over the world. Right now we are linked a lot to conversations about long COVID. I wish that people didn’t have to get sick and die for Myalgic Encephalomyelitis to be mentioned in parliament and the CDC.
I have so many things I want to do to make a difference to people who have Myalgic Encephalomyelitis as well as things that will make a huge difference to my life.
Myalgic Encephalomyelitis is a very lonely illness so if you need a friend then I am here. look forward to hearing from you. Love always, Alisha 😘