4

Make it go away

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 again. 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

penny droppedI 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.

4

I wouldn’t knock it til you’re in them shoes

My last post was about our charity attempt at running in the Belfast marathon. Well, we did it! We raised a lot of money that will be going to the Community Brain Injury team that have helped myself and many others navigate the confusing terrain of brain Injury.

So I write to you today a bit achy, a bit tired and a mixture of happy, proud, relieved and grateful. I was posting pictures on Facebook and Twitter from the day and it got me thinking about what the outside world sees and how sometimes that is far removed from the reality of things (not just for me, I suspect we all put our happy, sorted and confident photos onto social media). It is nice to see people enjoying themselves but can be quite demoralising if you’re having an overwhelming day and think you’re not matching up to their lives. Tip 1: NEVER use social media to compare yourself to others, what other people post up there is only a snapshot of what’s going on, they get sad, frustrated and lonely too!

It occurred to me that there may be some dissonance between pictures people see of me and what is really happening in my day. There may even be some mutterings of ‘she’s not sick/recovering/ suffering, look at her there, dressed and outside’.

Posting images such as this one of my view during the marathon

marathonor this one from Beltane

beltanewell these can make it seem like I’ve got it together and I’m ‘better’.

But as I’ve mentioned in previous posts brain injury without any obvious physical impairment is very much an ‘invisible’ disability. What people don’t realise is the amount of work that has gone in BEFORE these photos were taken.

It starts as an idea maybe weeks before it actually happens, there will be some days where myself and Mr Braingirl go to do what we’ve planned and anxiety or fatigue may have other ideas so back onto the planning stage it goes. So we wait for another ‘opening’. When we finally make it out of the door (usually with some lingering anxiety) we have to be able to park near to where we need to be, we also can’t plan for a full day – I get too tired, so we have to fit all we need to into a few hours.

Once we’ve made it through the obstacles we take photos, because it’s nice to take photos and make memories but it’s nice to have them to share with my friends and family and to also say “LOOK, LOOK I DID IT TODAY!” ( how sweet that is!). If you’re reading this and you follow me on twitter or Facebook and get to see my photos please try to imagine the strength it took to get that photo and be happy for me, encourage me. I’m happy when I post them, I look at them many many times because It feeds the part of me that bulldozes through regardless, it nourishes the nature loving, go get ’em bit of me that was lost for so long.

That bit is returning slowly, evidenced by lacing up my trainers on Monday and running in the rain and wind and cold a distance further than I have ever run before. A distance that I did despite the Mumu of Injury talking to me all the way through telling me I was damaging myself and I wasn’t safe. I ran anyway and I think that has to be a metaphor for the whole recovery process, a brain injury IS a marathon, not a sprint and sometimes you may have to stop for water and a rest but keep following the route and eventually you’ll reach the finish line.

forrest-gump-17

Source: Forest Gump: Paramount pictures: howtosurviveinparis.wordpress.com

Run and don’t you ever let things stop you.