The weekend is almost over. It’s 11.45 pm, what a week. I feel like my brain has been on overdrive this week. My body has ached and felt heavy and swore. Let’s hope tomorrow brings somewhat “feeling better” I doubt that.
A new week always daunts me, depending on if I have plans, appointments, things to do. I try now not to overload myself; I get way too overwhelmed.
Tonight was positive, I hate that word sometimes. It’s like when you have ME/CFS and people tell you to “be positive” like really.. they mean no harm I know, but it’s very offensive to someone who has ME. If you are close with someone who has ME you should know that simply trying to have a positive mindset is not as simple as you may think, the same with somebody who has depression *cough, me also* anyway, I’m on an ME support group and this wonderful lady responded to a post I put about how to grieve my old self and she had the most wonderful response linked to “being positive”
Quote:
“The problem is, although people mean well when they say keep a positive mindset, it’s actually incredibly invalidating and it makes you feel so unseen – and it’s kind of for their benefit bc they don’t know how to support you and can’t handle your feelings. And you know, that’s okay, these are very deep feelings only a professional can navigate properly. And that’s how I learnt to cope, with the help of a professional.”
and oh my god, this was the best comment I’ve read in a long time and I was stunned, it opened up my mind completely and I felt so comforted by this. It made me feel somewhat happy that someone actually understands EXACTLY how I feel. This illness is so mentally draining and lonely beyond belief. What makes it so hard is it’s unbelievably difficult to explain to people. Now I know that my family and friends simply just won’t understand and cannot, they will never say the correct thing. I can move forward and to try to not take it personal.
Sunday evening:
This week has been a huge week of reflection for me. My partner has been off all week which has been wonderful, I love spending time as a family. I’ve managed to cope better having help with doing things, general tidying up and day to day with baby. Plus it’s just been lovely to be with him. I’ve had a good few sobs this week, it’s also been hard. I feel like a lot of days I am letting my little family down, I can’t do most activities anymore, can’t play with my son as much as I’d like, but I have to accept that sometimes I need to listen to my body. My body and my mind are worlds apart. My mind says: “GET UP, COME ON, GO DO THIS AND THAT AND SORT THIS OUT AND COOK THIS, GO OUTSIDE, WALK THE DOG, SEE YOUR FRIENDS OR FAMILY” but then my body is telling me “absolutely not, you know what will happen, you’ll crash. You’ll feel so poorly tomorrow from over exerting yourself and you’ll be in pain, so much pain, stiffness, an even worse exhaustion than you have most days. Don’t do it.”
Now, tell me how you cope with that? Which do you pick? A crash could last days, or even weeks on end for me. My biggest crash happened in July. We went to visit my Dad, he’s about 2.5 hours away, of course I didn’t drive. But even the car journey was hard. I had the nicest weekend but suffered for weeks on end from it. I’ve come out of it. Out of that horrible crash, but it’s scary. During my crash I felt so ILL, there is no words. My mind fried, my body couldn’t function, I felt I could have happily just rotted away. We got through it.
Back to Sunday evening; this evening has been one of the most happy few hours I’ve felt, in a little while. I have happy days, with my boy and my partner and dog. But tonight, I managed to play a simple game pick up sticks with my partner. We laughed and played. It was like, I felt the old Eden again. She was hiding there somewhere just aching to come out.
She’s been away for a while.
Maybe that’s my little bit of hope for today. Some days maybe that’s all you need.
Reflect on the good and bad. You can’t help it. You can’t not reflect on the bad; you’ll never heal.
I don’t want the word positive linked to myself anymore, I don’t associate it with me. It’s not my word. It’s insulting. I just need hope, support and love. And that is OK.
People to listen, to help me reflect too.
I am grieving, my mind, my body. I no longer have a 26 year old body. My mind now is overtaken by this illness.
Let’s just hope one day I find my peace.
My journey with ME 