Sorry that I haven’t posted anything in a while, but with the increase in severity of my symptoms, particularly the fatigue which has been ravaging my body and attempting to survive during the heat wave (the Summer months, specifically the very warm weather can be particularly difficult for people with neurological conditions – for more information visit the Brain and Spine Foundation’s website).
The hot weather (and a slight case of anaemia) have wreaked havoc on my symptoms; they have increased in number as well as being more severe. At night, it has been particularly bad due to the humidity, leaving me unable to sleep. This cycle of being too warm and not sleeping, leads to an increase in the fatigue. But like many neurological conditions, symptoms don’t come on alone. Just like the supermarket offers, if you get one symptom then you also get 4 symptoms for free! So, as well as the fatigue, there is also the intense dizziness and vertigo, nerve pain causing severe tingling, and also the weakness in the legs, resulting in an increase in falls as they collapse from underneath me.
Again, as have happened before, the weakness in my legs is becoming more severe, and both myself and my carer (or personal assistant) have noticed an increase in stumbles and collapses as we have ventured out. For example.we were shopping at a local clothing store, and after paying for my goods at the till, my legs suddenly collapsed, and I landed in a heap on the floor of the store! Cue a red face! The staff at the store, however were fantastic and provided us with a stool for me to sit on whilst I regained the strength I needed to be able to stand back up and continue walking. Another collapse then happened at the swimming pool, after a session in the pool itself, my legs suddenly collapsed, and was left unable to stand for a while after, and needed help from both my carer and the lifeguard on duty – the centre provided me with a moveable chair to help me get to the shower and changing rooms.
However, all these falls has made me revisit the idea of the wheelchair. Is this a sign from my body that I should now use the wheelchair? For me this is not an easy decision to come to, as although the wheelchair would be very beneficial for me due to the weakness in my legs, and would obviously lessen the likelihood of any injuries from falls, it however isn’t so good for the dizziness that I experience, as the motion from being in the chair makes me even more dizzy and nauseous. It’s a catch-22 situation! Although, on the same day as the fall at the swimming pool, as we visited a garden centre for a light refreshment afterwards, we did borrow a wheelchair and although I was extremely dizzy whilst sitting and being pushed around in it, I did manage to stay in there for the entire time we were at the centre. At least there is some progress, right?
I have tried everything to keep cool – using a fan, light clothing, drinking more fluids during the day, eating ice lollies, and so on, but still I am struggling through this heat wave and the symptoms are still not subsiding. I have even need to wear a hat indoors to try and block everything out in order to combat the dizziness. Uggh! And if the weather reports are to be believed, then it looks like The Style Council were right, it is going to be a ‘long hot summer’…