What you don’t see…

I’m going to level with you here. MS has floored me over the last few months. Both mentally and physically.

On a physical level, I’ve been in agony. Not being able to walk far without being in A LOT of pain. Unable to stand for much longer than a few minutes without needing to sit down again.  My feet are burning, my back is screaming and my legs are jelly.

Fatigue has been crippling. Yet I’ve struggled to get a good night sleep.

You don’t see this. Some of you, I talk to every day, but I’m a square on a MS Teams or Zoom call. I’m a text or a voice note. In fairness, leading a relatively sedentary lifestyle, I don’t even notice how badly MS affects me until I have to get out and about.

And I’ve definitely been getting out about for the last couple of months. But it’s been a lot. So much.

Mentally, it’s times like this that I’m forced to face into my diagnosis. For the most part, I bury my head in the sand and say ‘yay, I get to go sailing’ or ‘cold water is so addictive, how bad ass am I?’ But the reality is neither of those things truly heal. They provide a distraction.

When the realisation of The Big Scary Thing rears it’s head, it’s like I’m going through the grief for my healthy body, my independence all over again. Because I feel like I’ve lost my independence. Some day, I can’t even cook a meal without being in agony, and I love cooking fresh food everyday.

Anyway, for now, mentally I’m ok. The Big Scary Thing is back in the box. But I’ve been referred to a neuro-psychologist to get help. Because I’m so ableist towards myself. I gas light myself daily, not believing I’m disabled enough to go easy on myself. I push through because I can – despite the fact it’s deeply uncomfortable. I put loads of other people before me.

I’m losing some of the noisy stuff. The stuff that doesn’t need to be. Reducing some of those self imposed commitments. I’m trying to accept that it’s ok for me not to be 100 miles an hour, and being the person to always stick my hand up and take on the extra stuff.

You’d think after just over 6 years I would have started to accept things. But I don’t. I don’t know if I’ll ever accept. But I do probably need to accept that it’s ok to get help. Whether that’s accepting a friend offering to carry my suitcase for me, or considering mobility aids, ambulatory wheelchair use.

I get frustrated when people don’t understand how hard it is, but if I’m masking it like hell, and can’t even accept it myself, how do I expect everyone else to?

Thanks for coming to the TED Talk…it was therapeutic to get it off my chest…