Finding My Sparkle Day 116: Wednesday 27th June 2018
It’s been a few weeks since by last blog and I’d love to say that I have progress wins to report but I’m not really sure I’m making progress with my post-concussion syndrome recovery. I’m definitely learning to embrace the things I can do and celebrate the wins every day.
Read on to get the latest and watch the video below:
Referral to brain injury clinic lost in the post
I’m still waiting to be seen at the brain injury clinic. Last week a few people close to me asked me to chase up my appointment. I have a weird sense of time so to me it just felt like a couple of weeks since I’d been referred. So I chased it up and long story short, the letter my doctor sent never arrived. At that point it had been a month since the letter was sent. How is it in this day and age with all the modern technology at our disposal that the NHS are still relying on actual bits of paper in the post?!
I was assured by my surgery that another letter would be sent in the post and in internal mail and the consultant would treat it as urgent. I got a call on Monday to say the consultant had received the letter and so now I’m waiting on a letter to arrive in the post with an appointment.
Post-concussion syndrome symptom update
I last saw my doctor on 12th June. At that point I told him that I’d started stubbing my toes when I’m walking. He did some resistance tests on my legs and it felt like a couple of things he was asking me to do my body just didn’t want to do it. One was where I was lying down on my back, my knee was bent and he was applying pressure from underneath. I had to resist and push my leg down. He’d asked me if it was painful as my right leg barely moved. It was the same as the month before when he did this test. It wasn’t painful and in my head I was trying but my leg just wasn’t doing much. The left leg was slightly better.
Since then I’ve noticed my right foot sometimes drags along the ground when I walk. When it happens I try to concentrate on the movement of walking and lift my leg higher but it doesn’t make a difference. I feel as though there’s a disconnect between what I want my legs to do and what they actually do.
At the end of last week I started having weird sensations in my legs. It’s like my muscles are twitching by themselves. I’ve felt it in my arms and hands at times too but it’s mostly my legs. The other day I was in the bath and I couldn’t control the toes on my right foot. They were moving all by themselves.
I don’t know what this means. I hope it’s a sign of my nerves healing but I’ve had no specialist help yet so I can’t wait to get into the brain injury clinic to get some answers and also started on some kind of treatment. I have a lot of symptoms to deal with every day and it might be that I’m not seeing the recovery now as it’s slowed down. I’m very hopeful with treatment that my brain will respond to it and I’ll see more signs of recovery.
For all my symptoms if I could get help with one thing it would be my mobility. I can’t walk far these days, it takes me 3-4 times as long to walk anywhere and just last night I fell against the wall in my hallway and then onto my bed as it’s like my brain totally lost all sense of how to walk.
Learning to live life in the slow lane
It’s taken me a long while to accept that my life for now is in the slow lane. Instead of focussing on all the things that I can’t do, I try hard to be grateful for the things that I can do. As frustrating as it might be, me sitting around feeling sorry for myself won’t do me any favours. I try to see my family on a Sunday afternoon unless I’m having a bad flare up and just know that I can’t handle being around a group of people. Too much sensory overload with noise and I have to leave.
Living with post-concussion syndrome makes me so grateful for the good times and people in my life. I’m all for appreciating the small wins everyday. Here’s what I’ve been getting up to the last few weeks.
I was supposed to be in Edinburgh for an amazing business event CMA Live 18. I bought a ticket last year and was gutted that I had to pull out. My friends Maggie and Jim took me out for a wee photography trip on one of the days and we went to Crail and St Monans. I haven’t edited any of the photos yet as my brain doesn’t like me spending long at my iMac but I’ll get round to them one day. Here’s a few mobile snaps.
I have my amazing sparkly walking stick too, purple of course, so that’s been helping me feel more stable when I’m out and about. I swallowed my pride and I accepted that I needed to listen to my loved ones!
It was my Dad’s birthday a couple of weeks ago so it felt great to spend the afternoon with my family that day. In typical stubborn AJ style I stayed too long (3 hours instead of 2) when I was already in the middle of a flare-up and ended up needing a few days on the sofa. Lesson learned and I’ve asked JP to be more firm and take me home when I can’t be sensible.
Last week my very kind friend Pam invited me into her hair salon Fin & Co. for a hair treatment and trim as a wee treat from her. She even arranged for Kayleigh to pick me up and Pam gave me a lift home. I had a fab morning in the salon and came home feeling really great with nice bouncy locks that I can never do myself haha!
The weather has taken a nice turn recently too so I’ve been spending the afternoons in my local park, chatting to the dogs that come over. It’s nice to be be outdoors and do some colouring in or try to challenge my brain with Sudoku. Long may this sunshine continue!
My message to my warriors
One thing I’ve learnt over the past few weeks is that you need to learn to stand up for yourself. If you’re waiting on an appointment coming through, don’t be afraid to pick up the phone and ask what’s going on. Phone calls can be difficult with memory blanks but write down what you want to say before you pick up the phone and don’t be afraid to ask for help.
Has PCS given you a new appreciation for life? What small wins have you had recently? Pop into the comments below and let me know.
I know how incredibly scary life can be when you have post-concussion syndrome but I don’t want you to feel alone. I’ve got your back and if you need to chat any time, please get in touch. You’ll also find me sharing my journey daily on Instagram and on Twitter so feel free to connect and say Hi!
And remember, you’re not broken, you’re finding your sparkle so do something every day that makes you happy!