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Finding My Sparkle Day 124: Thursday 5th July 2018

Today I finally got the call I’ve been waiting for and I can’t tell you how relieved I feel.

I have a brain injury, post-concussion syndrome, following a sledging accident and if you read one of my blogs from last week you’ll know that my referral to the brain injury clinic got lost in the post.

I had a call last Monday to say that another letter had arrived and it would be treated as urgent. What does that mean though? Another week went by with no word of an appointment so I asked my doctor’s surgery to chase it for me.

 

Read on to get the latest and watch the video below:

 

 

Finally getting my appointment for the Brain Injury Clinic

I had a chat with my doctor on the phone this morning and he wants to see me tomorrow to review me as things haven’t been great since I last saw him with my walking, muscles twitching and low energy. Shortly after that call I got a another call to say I will be seen at the Brain Injury Clinic at the end of this month. Woooohoooooo! I still have to wait for a letter to come through in the post with an actual date but just knowing that this is coming feels good.

I’ve no idea what treatment I’ll get but I’ve known for a while that I need specialist treatment, especially as my walking has been worst the last few weeks. In my head I think I need physiotherapy to train my brain how to make my legs work properly again without dragging my feet, stubbing my toes, buckling at my knees or feeling like I’m going to fall over. I have a whole host of other symptoms but it’s my mobility that really gets me the most. If that can be improved I’ll be over the moon and maybe even jumping for joy!

 

Therapies to help my post-concussion syndrome

It’s hard to know what might be the thing that works for me and helps me get better. So far I’ve been doing sessions in a sensory deprivation tank (also known as floatation tank therapy) thanks to a whole heap of people helping me financially with that. It takes away the pain that I get in my legs and gives me amazing deep sleeps. I haven’t been able to sleep like that since the last session a few weeks ago and I know how key proper sleep is with my recovery. I’m hoping more sessions will help get that back on track so if you’re able to help, I’d really appreciate it.

I’ve also been trying to eat well as there are a lot of foods that can help the brain heal such as beetroot, avocado, nuts, seeds and coconut oil. There are more but these are the ones I’ve been concentrating on.

I’ve been given a lot of advice from other PCS warriors and I’m so grateful for that. Ultimately I just can’t wait to be seen at the Brain Injury Clinic and get specialist help. I really hope I’ll start to see more improvements with my recovery.

 

Trying to find the balance

I try to get the balance right between doing what I think my brain can cope with and giving it rest when my symptoms are really bad but it’s often a difficult judgement call to make so the last week has been fairly chilled out.

I know from experience that if I go out for a walk when my symptoms are flaring then I could be wiped out and make my symptoms worse for days. On the other hand I don’t want to stop going out entirely and lose any strength in my legs.

So I haven’t gone to the park this last week and instead have done a walk around the block every couple of days. My body has mostly felt wiped out this last week and I’ve been doing a lot of sleeping through the day but we have had some beautiful weather so it’s been nice to appreciate that from the back garden.

 

 

We went through to my Mum and Dad’s for the family traditional Sunday afternoon cuppy. What a laugh I had on this sun lounger. Lie back slightly and it totally flips back. It’s hard to get the balance right!

 

 

Wimbledon is on too and although I’m a little sad that Andy Murray has had to pull out as he’s still recovering from his hip surgery, I’m happy to cheer on Roger Federer. I did have to catch part of yesterday’s match on the replay though. Couldn’t stay awake haha!

 

Looking forward to a house move…..maybe

In other news we’re waiting on moving into a new flat and we’re very hopeful that we’re going to get the keys in a couple of weeks. We were supposed to move in at the start of the year but there’s been a few delays. I truly am being served two massive lessons in patience right now!

It’s been decided by JP and my parents that it will be best for me not to be involved in the move. Moving house doesn’t stress me out at all. I love the excitement of moving to a new place. However, they all have concerns about my ability to even sit at the new flat and direct people as there will be a lot of coming and going and they think that and the noise will be too much for me to handle. I must admit I wasn’t entirely happy about their suggestions that I stay with friends for the weekend. I know it makes sense though.

For now I’m gradually trying to go through my possessions so I don’t take anything I really don’t need, however, my good intentions and actually remembering to get them done are two very different things!

 

My message to my warriors

One thing I’ve learnt over the past 4 months is that it’s soooo important to listen to what your brain is telling you. If you have a few days where you feel completely fatigued and don’t feel like you can accomplish anything except watch a bit of telly and sleep, then do that. What you’re actually doing in those moments is giving your brain exactly what it needs and you should never feel bad for that.

What treatment or therapies have worked for you? What do you do on the days where your brain is telling you to take it easy? Pop into the comments below 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 daily 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

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