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  • Writer's pictureShelley Hossack

Daily challenges

I thought I’d write a different kind of epic today due to the number of private messages I receive asking how my brain tumour and Multiple Sclerosis affect me and my day-to-day life.

As most of you know debulking my tumour resulted in horrific complications, (I won’t go into this again), some of which are still evident today. As my tumour couldn’t be removed completely it means I still get MRI scans to make sure it’s stable, (next one is in a week).

During my recovery I was also diagnosed with Multiple Sclerosis which explained the many ‘extra’ complexities I faced.

The reality is I live with the worry about whether my tumour is ‘behaving’ and I live with an unpredictable disease.

However, I never think that I’m living with a disability. I hate that word. Personally I find it dis-empowering. I prefer to think that I have some limitations.

So day to day I have to work twice as hard as the average person just to move or carry out ‘normal’ tasks.

Because I’m partially sighted and deaf, crowds, noise and lighting all create havoc for my brain and central nervous system. It means I’m on ‘alert’ constantly which can often result in fatigue.

I have this quirky walk because I have an inverted foot due to damage on my brain stem and cerebellum which means I hip hinge. My balance is ropey too which doesn’t help.

I’m incredibly self conscious of the way I move and when I’m nervous my quirky walk is quirkier. New environments challenge me, even wearing new shoes or trainers requires a period of ‘adjustment’.

Because of my inverted foot I can no longer wear heels. I was always a heels girl so this actually bothers me a lot. I have to remind myself that at one time I was wheelchair bound – no heels is no biggy!!

Concentrating for long periods of time can be difficult. Writing can be tricky too. My right hand gets ‘tight’ and I have instability around my shoulder.

Training and exercise can be problematic but I always find a work around. I do press ups on my fists for example, (as a result of aforementioned tight hand). I quickly learned to never wear white clothing in the gym as it’s not uncommon for me to drench myself in water. As my temperature rises I get temporary MS symptoms until I’ve cooled down. Sometimes because of this I crawl between equipment on my hands and knees as my limbs go ‘funny’.

In general, I have core temperature problems most days. And not just during exercise. Funnily enough I’ve come alive this last few weeks. The drop in outdoor temperature is an utter relief! I’m still in a 3.5 tog duvet but my bedroom window is now closed and my fan is off.

I truly believe cannabis oil, exercise and nutrition have all played a part in restoring and maintaining my health. I’m also of the opinion that because I am so in tune with my body, (I know what it needs and when), my tumour and MS remain ‘stable’ and ‘inactive’.

I have adjusted incredibly well and truthfully most people have no clue about the daily struggles I face. And that’s exactly how I want it. Only the people closest to me can tell when I’ve exceeded my capabilities for the day. I have a habit of pushing it past level 100. Tell tale signs that I’ve pushed to hard are ‘jelly’ legs and my vision gets distorted. Oh and I get uncontrollable inappropriate laughter which is better than crying haha.

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