It’s Monday morning, it’s dull and rainy and I’m tired. The Spring, like my mood has gone a shade on the grey side.
I’ve been sat up in bed today on my Twitter and realised I’m in that lovely place again. I’m setting up camp in hopeless and lost town. I’ve no idea how long I’ll be here for but all I know is that it feels horrid and I seem to grind to a frustrating and upsetting halt.
There is usually a trigger to my jaunts into this place and I have to sit and think about what has caused it, it’s usually something that occurred a few days earlier and seemed fairly innocuous at the time. I had a busy (for me) old time of it last week, I was on local radio and TV for Action for Brain Injury week. I had to go to the BBC here in Belfast and do a quick interview and then get filmed at home. It was an early start but I pushed through even though I knew it would make me fatigued because it was important to spread awareness. I was very pleased to have done it and it brought a little bit of excitement into my day. That day I also had another appointment later in the afternoon to go to so by Tuesday evening I was completely done in.
Add to this my period (sorry) it’s not something often talked about in brain injury circles but when you do mention it, you get lots of ‘oh my god, YES!’. The menstrual cycle, often a time of mood swings and cravings becomes ‘Period Part 2: The Revenge’ when added to a brain injury. I get deep sadness and also fatigue on top of tiredness on top of fatigue. I also get more aches and pains in my surgery site at this time which gives me lots of nerve pain and thuds and pins and needles, these make me anxious. As a result I often become completely immobile for a few days. It saps my will and my precious energy. I cant even begin to describe it adequately but again, unless you experience it yourself you’ll never understand. It’s not I assure you, a very fun time.
So yes, I’ve been a sobbing tired mess for 4 days. But there’s been something extra this month and I couldn’t figure out what it was, then the penny dropped
I had another epiphany this week, one that sneaked in quite quietly but means I have to readjust myself once more and this readjustment always unsettles me. I have just started accessing a vocational service called CEDAR, its a service to help me get back into education or employment as well as finding my way back into my hobbies again and it was during my meeting with them that my mind shouted at me “YOU’VE GOT A BRAIN INJURY!” well yes, you may be thinking dur, no surprise there, but let me explain.
I have up until this point thought ‘oh, I have a brain injury’ now I KNOW I have a brain injury. I have rather foolishly been thinking it happened to me, but I’ll be the one, the one that it didn’t affect in any way, the one who will be 100% better. Well sorry sunshine, but this aint necessarily so! I am a service user of agencies put in place for people with a disability, I have a disability, I finally realise that now. I have a disability that makes me sad, tired, unable to do what I used to do and here’s the clincher, IT WILL ALWAYS BE THIS WAY, it’s going nowhere. It makes me have to look at what I want to do and see how I can make it manageable, is it even a possibility for me anymore? This made me incredibly sad and feel defeated. This has been the cause of my retreat into myself again.
As always though, I sit with these feelings, I accept them and I start to see the other side…. eventually.
For now I am sad, frozen in bed, I am tired and I am hating my injury, hating how it’s changed my life and crying for my loss again. The grief in full swing once more. THIS IS NOT EASY.
I know this song is on a very specific subject but there’s a lot in it that resonates with me right now.