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Finding My Sparkle Day 131: Thursday 12th July 2018

Last Thursday I had a chat with my doctor on the phone. My walking had been worse since I saw him a few weeks before and he asked me to go in the next day so he could do a review. I’ve now been living with my brain injury, post-concussion syndrome, for over 4 months and he’s sending me for a CT scan to check if there’s a bleed on my brain.

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

 

My legs aren’t doing what they’re supposed to

When I saw him on Friday he asked if I’d noticed any weaknesses. Not in any specific place but I have been exhausted for a few weeks. I told him I still have a lot of pain in my legs. When I walk I kinda look like a deer trying to walk for the first time with my legs buckling at the knees and my feet stubbing and sometimes dragging along the ground. My walking stick is pretty much a 3rd leg for me.

He adjusted the bed but the head bit fell down while I was sitting on it and I totally jumped and screamed a little. I’m still very frightful. He did lots and lots of tests. My legs responded to the reflex tests this time so that’s positive. He did some of the same tests he’d normally do with me lying on the bed but had me sitting. I still couldn’t perform some involving the back of my legs well especially on the right leg.

I couldn’t press my legs into the bed. Again he’d ask if it was painful and I’d say I was trying but I couldn’t do what he was asking. That was so frustrating to see. To be trying with all my might and for my body to not respond very well at all. I really do hope that physio will sort that out.

He repeated the tests with me lying down and had me do a whole bunch of other things. He watched me walking and said I have weaknesses but worse in the right side. He asked how long I’d been doing something with my gait like putting it out but I didn’t understand what he meant. I told him my walking had been worse the last few weeks with me dragging my feet especially the right one.

He also had me balance on one foot at a time. Again I was worse on the right side. I seemed better on the finger to nose coordination and he said my eyes looked healthy.

 

I’m being sent for a CT scan

He’s sending me for a CT scan at Stracathro which will be next Thursday.

There might be a late issue that’s developed like a bleed on the brain but usually something would show at the back of my eyes and mine look healthy. It could explain why my walking is getting worse but it’s just a precaution. The CT scan won’t show the PCS but it will show if there’s a bleed on my brain. I’m sure that it’s just a case of things getting worse before they get better and people around me are more freaked out about it than I am.

It will be what it will be. If it is a bleed I know I’ll be given the best care and if it’s just things getting worse for now then I’m totally ready to go to the brain injury clinic and do whatever I need to do to get well again.

I still don’t have my appointment through for that which is a little frustrating. If I don’t have it by the start of next week I’ll try to remember to phone. Best set a reminder for that.

By then my mind will be full of excitement as we’re due to get the keys for our new pad on Monday. Only 7 months late but I’m not dwelling on that one and it’s another big lesson in patience I’m being served right now. I’m literally getting two for the price of one!

Oh my days! I just don’t know how my brain will cope with all this excitement!
 

My message to my warriors

I like to write down notes when I notice changes in my symptoms so I can make sure I tell my doctor. Have you noticed changes in your symptoms as time has gone on? 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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