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11 months with Post-Concussion Syndrome
Day 329: Saturday 26th January 2019

It’s been a couple of months since my last blog where I said I would try to update you more often and, well, things don’t always go to plan. My brain doesn’t like sitting in front of my iMac and I haven’t felt like blogging for a while. Oops, my bad!

Now here I am in bed with my iPad and keyboard combo and I feel like I have something to say. So let’s just start afresh, I’ll let you know where I am with my post-concussion syndrome recovery and we can go from there. Oh and I’ll also tell you about something I’m really hopeful will help my recovery.

Sounds good? Cool!

 

My first Christmas with a brain injury

December was a mixed bag. Usually I’m so busy at that time of year but it ended up being the most chilled out Christmas time I’ve ever had.

I spent most of the month either in bed or on the sofa being absolutely wiped out. My symptoms were baaaaaad but on the flip side I was so grateful to be able to spend time with some pretty special people that mean the world to me. I had to really look after the little energy I had.

It’s close to 11 months since my accident and I’ve got used to saying no a lot. Not because I don’t want to do things, but because simple everyday things that I used to take for granted have such a big impact on my health, that I have to make good choices. I used to feel like I was being punished for spending time with my family and friends. There’s always an affect on my health because my brain is highly sensitive to noise.

These days I try to live my life from a place of gratitude. I trust people I spend time with to help look after me and I’m truly grateful to be able for any time I do spend with them. I’m not being punished, I just have to manage my symptoms and that’s the way my life is. Feeling totally proud of myself for that mindset shift!

Christmas Day was everything I wanted and needed it to be. Spent in my jammies all day long, snoozing on the sofa in the afternoon, complete with a Chinese takeout for tea. Living the dream! Neither of us like turkey and I didn’t want to travel and have to manage my symptoms away from home that day. So we spent time with family on Boxing Day instead which was a much quieter day than if we’d tried to do it on Christmas Day.

 

Chinese takeout for Christmas dinner

 

Gradual exposure technique for noise sensitivity (hyperacusis)

Noise sensitivity is still the biggest trigger of all my symptoms. My occupational therapist has been guiding me through the gradual exposure technique since September. This is to help teach my brain slowly that noise is ok. As you may know my brain freaks out at traffic, wind, conversations, all sorts of normal things. When that happens I really struggle to walk, talk and think which is why I spend most of my time at home.

We were making some progress with this but because I had such a bad December, when we had our first session of the year a couple of weeks ago, it just didn’t go well. I never ever felt well enough that month to do any of the work I’m supposed to do and so I’ve had a setback with it.

I usually have occupational therapy weekly but the last time I saw my therapist she asked me to take a couple of days to recover and then go back to the beginning with the work we’d been doing. I saw her the day after having a hospital appointment where I had to get wheeled out to the car because I didn’t have enough energy to walk.

I ended up needing the rest of the week to recover. Then on Sunday I felt like I was over that setback so went to see my family. I would normally take breaks and have a lie down away from my family to let my brain settle down. This wasn’t an option as my brain was even more sensitive to noise than usual and when I couldn’t open my hand to take pills I knew it was game over.

This week though I’ve managed to walk the length of my building a couple of times outside, having to stop every few steps, but I still did it. I have my next session on Tuesday so hopefully my occupational therapist will see an improvement.

 

Anne Johnston working on gradual exposure for hyperacusis

 

Ankle braces to help my walking

I started going to physiotherapy at the same time as occupational therapy. At first we spent a couple of months only working on my walking. I have 11 exercises to do at home 3 times a day. Memory is a barrier as I often forget to do it as well as pain and fatigue but I do try.

In December they fitted me with Boxia drop foot ankle braces. It’s like having added spring in my feet haha!

 

Orliman Boxia ankle braces worn by Anne Johnston

 

Orliman Boxia ankle braces

 

They help to stop my feet dragging on the ground when I’m walking. The problem I have is that walking is like a huge multi-tasker for my brain. Add noise into the mix and it becomes very difficult for my brain to figure out how to walk like a normal human being.

So now I have a bit of extra assistance and I’m cool with that. The idea is that when my brain learns a good walking pattern with the help of my crutches and braces, we can look to take the aids away. One day we hope that I’ll be able to use my funky walking stick again with a much better walking pattern.

 

Different approaches to help improve my balance

For the last couple of months my physiotherapy team have been adding different things into the mix to help improve my balance. We still work on my walking too as helping my mobility is key.

We use the parallel bars to help me walk and these are great for the work we do on my balance too as I can hold onto them first to help find my balance before trying to take my hands off. So far we’ve used a foam pad, a wooden balance board so I can try to balance from front to back and side to side (that way is sooo much harder) and I think there’s been a couple of other things too but I can’t remember specifics.

Yesterday we used a gym ball for the first time. Watching my support worker sit on it, it looked pretty straightforward and then I had a go! We had the ball placed between two chairs with my support worker behind me. She said if I was going to fall I’d go backwards.

I found it really challenging to just sit on the ball without having my hands on the chairs for support. I had to move my hip out to either side and then back into the centre and a few other things too. The most challenging was to lift one of my feet and move it forward a little. That is a big ask of my brain.

I really like to be challenged in different ways though. Although learning anything new is hard cognitively on my brain, I know that it’s good to push it and that’s why I’m going through rehabilitation… to get better!

I was keen to get a gym ball to use as part of my home physiotherapy but I’m not allowed to until I can show that I can balance safely on the ball, no hands. So that’s the next goal I’m working towards.

 

Could the gym help my brain injury recovery?

The one thing that totally made my week though was finding out that my physiotherapy team are looking to get me into the private gym that’s across the road from my flat!

Exercise was a huge part of my life before my accident. I went to spin class 3 times a week, I played badminton, I hiked Munros (ok, mostly in Summer!) and I’d just started going to weightlifting class.

I’d been speaking to JP recently about the possibility of joining the gym he goes to but we’d thought it would be too much for me to cope with between the noise and the fatigue that I already have to manage.

At physio yesterday I was asked if I’d thought about going to a gym and I just lit up. I really didn’t think it would be a possibility for me right now but they think it will be really good for my recovery to get me into an environment that I enjoy and gives me a sense of normality.

So they’re going to visit the gym, have a look at what equipment they have, assess the noise levels and find out when the quiet times are. Then all being well they will write me up a programme that I can follow with goals. I’m so excited at the idea of going and hope it all works out.

I really miss that feeling of being able to physically push my body to the limits, get out of breath and then feel the rush of endorphins after. I know that my legs are getting stronger as I can feel the muscles when I touch them but I don’t have the control over them and fatigue is a big symptom for me to manage. Fatigue is not being tired at the end of a long day. It’s asking my brain to make my body do things and it’s so fucking hard to move my fingers or lift a limb because my brain has had enough.

I’m not expecting miracles if I can go to the gym but I do know that I’m a fighter and I’ll put in as many baby steps as it takes and then maybe those baby steps will become big strides! If I can be there it will mean the world to me and that’s got to be good for my overall wellbeing.

 

Over to you, warriors!

Do you have noise sensitivity too or balance issues too? What has helped you? Pop into the comments and let me know.

I know how incredibly scary life can be when you’re living with PCS 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 on Instagram 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!

Much love,

AJ x

PS Don’t forget to click the link below to get the next instalment of my blog! I’m not making any promises when that will be this time but I hope it won’t be another 2 months haha!

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