The catch up – Part 2 – Where I’m at with MCTD

I was watching an episode of Bel-Air – you know the new version of Fresh Prince? There was a basketball game on and I was enjoying the game, the team camaraderie, the competition and the highs of a win. I watched with a big grin on my face and then, as is a common experience of grief, suddenly I was sobbing, deep, painful crying from deep in my chest. It only lasted about 30 seconds and unfortunately I am familiar with this sudden rush of grief when watching basketball.

I played basketball from 10 years old until I moved to the UK when I was 21 and then picked it up again for one more year when I was around 26 – until MCTD symptoms started and I physically could not longer play. To say I miss it is an understatement, it is an ache deep inside me and something I can’t seem to accept will never be a part of my life anymore.

Our nieces are basketball players – in fact one is over in the USA playing basketball at college – which is very exciting. I love watching them play but at the same time, I want to be on the court, slapping hands with team mates after a foul shot, feeling that rush when the ball swishes through the net. I am so sad that I can not have that joy in my life and trust me, I have tried. About once every six months I drag my husband to the local court and shoot some baskets, dribble up and down and attempt a little one on one. Afterwards my knees lock up, my shoulders ache and I can’t raise my arms, my fingers swell and a deep malaise hits me and a flare is underway. And this is literally after 30 minutes of playing around, there is no way I could join a team and risk letting people down. So, basketball stays in my past and I let the grief rush through me when it comes.  

In recent months MCTD has been bothering me again, more than it has in years. Pain in my knees jumps from one to the other – literally making it hard for me to stand from sitting, get off the ground – or the toilet – and sometimes even just changing positions in bed.

My shoulders are so weak I struggle to reach my arms up to get dressed and do my hair. It’s not impossible but it takes a lot of energy. I find myself referring to my ‘spoons’ again like the old days.

I need multiple days to recover after exercise and I go to bed each day exhausted with raised glands and a heaviness that then pins me to the bed. I wake throughout the night because of the pain and strength I need to draw on to change positions.

I’ve booked in with my rheumy again in a few weeks, I haven’t seen him in person in years – maybe my medication needs adjusting.

What it makes me realise, as I move towards 40 is that what I can do with my body is only going to decrease. Whether it is because of MCTD or age or both, things are not going to get easier and so what this says to me is I need to move my body and do what I can while I can. Right now, this means aqua aerobics, long walks with the dogs, Pilates and the occasional weights session when I feel really good. I know I have to rest and that I will never be able to be consistent with exercise as long as MCTD rears its ugly head, but I will keep showing up and doing something as long as I am able.