Thursday, 4 May 2017

It's Not Going To Get Better

I think it's really hit home hard for me this week - my MS is not going to get better. Ever. Practically everything else you can get medically either does get better, there's a cure, or they can suppress it somehow. Not with my particular MS. It's won't get any better, and for now it won't get any worse. Frustration doesn't cover how I'm feeling. Devastated, really.

I'm stuck with this bastard.

It's not like having the flu for a week. You eventually "get over it".

Not with this bastard.

The only real encouragement and support I am getting is from people I've never met, who live overseas with various degrees of MS, that I've met on twitter. Locals, and family - I never hear from. I guess people just assume "Mal is going alright."

Well, I'm not. I smile, but I'm not OK.

I was away from Twitter for three days, and I received FIVE messages of concern from people on Twitter, hoping I was OK! Only one on Facebook. I had to wait three days for a return phone call from someone else.

Facebook is so bloated and overfilled with content, it's too easy to get overlooked. I am using it about twice a week, for about 20 minutes only (for a very specific group of people), and that's it. I have not missed Facebook at all, otherwise - hours of wasted time looking at pictures of food or cats or scrolling past endless pointless political bull$#it or other stuff. Twitter has mainly become my family of interpersonal connections for now.

I feel very isolated and alone, battling with all this, at the moment. Yes, it's a real battle.

I think one of the 'reasons' of why I'm feeling like this (if there ever is one), this week, is because I spent brilliant life-affirming quality one-on-one time with two really good close friends, last Friday and Saturday evenings. Since then - nada.

I think it makes me feel worse, that one of those good friends is the 12-yo daughter of a radio colleague. It's all above board (we're always together with her dad), but why do I feel better support from a 12-yo, than I do from other people who say they are my friends, or my own family? I... I just don't get it.

I feel forgotten, ignored, otherwise.

I am feeling very isolated, and I honestly hate it.

No, I am not "going to do anything stoopid" - it's simply more of this grieving / adjustment / adaptation thing I'm trying to deal with. I haven't got my "balance of spoons" right at the moment...

MS is a bastard.

Peas be with ewe 


  1. Mal you are not alone with this bastard. Your friends on Twatter are here for you, most of us have been through what you are going through. Use us we don't mind

    1. I really sincerely appreciate that, Jan. Honestly - thank you. "Some days are better than others".

  2. Oh yes there are the good days and then the bad days. At least you won't get bored larf

    1. Oh yes yes, Jan! Every new day with MS is a fresh new adventure! hahahahahaa