Feeling the burn

Sorry,  sorry, sorry I haven’t written in agessssss well here we go folks.

Huh hum.

“So we are thinking about 45 mins per session of exercise” 45 minutes? 45 minutes?  Were they having a laugh?? 45 minutes??! I couldn’t stand for 45 minutes!! “Yeah don’t worry about it we work with people with health problems” yeah…ok…”see you on Thursday!”

Shit. Have I gone stark raving mad?? I’m using a walking stick and have a strange leg thing going on (which by the way still bothers me and has been a pain in the arse this week-sorry mum n dad) and I’m going to go to a gym.

A gym!!!! A gym!!! “Chris I’m going to a gym for rehab” “ok cool, just be careful” (crikey I love that man so much!) “Do they know what NMO is???” (Chris bless him is a star. He has read about it, supported me, cared for me and reminded me I’m me).  “Yeah I think so….god I hope so”.

The gym team were great. They knew about NMO, T.M, all about me, my medications and got me going on a few exercises.

THUMP THUMP THUMP “I think my head doesn’t know what my feet are doing” I felt like Bambi. On a treadmill…..walking at snails pace….My  feet thumped, my palms sweated. I guzzled water and sat down. “Good, when we are in next time we will work on control….when you walk..tell your feet what to do…”

Yeah I can do this I thought my left knee had turned in which caused my foot also to do….it was quite uncomfortable, (since the new year I add, it has corrected itself).

It felt good, really hot….but my muscles felt good….to be moving as time went on, my feet freed up until I could feel every toe behaving and curling, it was great.

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The exercise continued as did the immune suppresant, which made me feel SICK. Morning sickness times a thousand. I was essentially pumping my body full of poison to stop me from attacking me, whilst still trying to live life and build muscle tone, density and strength.

Physically I was improving really well, but it was summer and it was difficult with the heat . I enjoyed the gym but some days I did feel fed up with it all.

The summer, heat. 40mg of steroids and rising mycophenolate (immune suppressant) sweat like I have never felt before, what was it like to feel cold? To feel full? To tired?feel not in pain? To feel not tired?

Blood test after blood est after appointment after appointment.

Oh for fuck’s sake give me a sodding break!!!!

” I want to see and NMO specialist please, I’ve had enough, I can’t cope, I can’t carry on like this, there are two NMO centres, I would like to go to Lieverpool please” .  “Yes of course” replied my G.P I will speak with Dr Green” “Thanks” “You are doing well Jane” “Thank you”.

 

My wedding and engagement rings were cut off (It’s odd not wearing them now, this is why), as my hands ballooned with water and my finger was getting infected, off it came after a lot of protest.

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Finally some good news.

“Dr Green you can go to Liverpool, to the Walton Centre and see Dr J”

“Thank you” I replied and breathed a sigh of relief.

The end of summer was good, I helped/cameo roles in a summer play with my drama group.

“Chris, my appointment is here, we are going to Liverpool”

Things were going to get better.

It was time.

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