I’m going to write a blog-Chris

“I’m going to write a blog Chris” “cool” I watched the C word on TV starring Sheridan Smith (a fave actress of mine!!) Portraying the character of Lisa ¬†and the blog in which was started: “Alright Tit?” About her fight with breast cancer.

You see, I had plunged all my upest, hurt, frustration, pain, sadness, you name it-into getting better. My mind even now does not let me remember things, they say don’t they-health professionals and psychologists the mind is powerful and why would we remember stuff that was so traumatic? I do sometimes-not so much now, but back then at times yes. Flashbacks almost. I don’t really talk about it-crikey I haven’t told you lot what happened before I was in the MRI scanner.

Is it time? Maybe.

I had to take a break for a few days from writing this. You see, NMO is viscious-I am so happy at the moment that I couldn’t bring myself to open up about everything that lead up to the ultimate attack-pre “sound of the underground”-I thought I was ready-sorry, I am not.

One thing I have learnt is I’m me….me….and that’s fabulous. I am here, living life.

I knew I had to do something with all these feelings.

So I thought I would write! Everything that would come into my mind…I decided I would pour into a blog….so I sat down one day with my laptop and a cup of tea and began to write.

Patients day was coming up….last time…the previous year I was still feeling a little all over the place. A lot of “iffs” and “buts” and really in the early stages of it all. The moon face, the funny walk, the lack of confidence, confusion.

This year….was going to be different. I put on a favourite dress, put my slap on, fluffed up my hair and I was ready.

“Jane?” “Yes” “Hi I am Lynn I have read your blog” “Really?” “Yes, I loved it” oh wow. People were reading this!

Did somebody say something?

“Ambassador!”

Ambassador?

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Don’t give up!

Scrape, scrape-bloody nora it was FREEZING!!!! Brrrrr. “Whoooops!!” As I slipped on the ice. More de-icer….and GO…! Had I got completley lost the plot? I could be inside, in the warm in my pjs watching paw patrol with James and Chris. Instead I was outside on a very cold January saturday morning, scraping my car ready to go to Slimming world-again.

Don’t give up I thought. Come on, I can do this. My steroid body had other ideas-to start with the weight would just not budge. It was almost like predisonolone was saying “haha screw you you’re stuck like this!” Whatever I seemed to do, or didn’t do…..the weight just didn’t move. Eat well and healithy…don’t eat well….drink alcohol…don’t drink alcohol…whatever I tried it just didn’t go. Possibly not helped by the fact I was still on iron tablets and codeine….which made me have diorrehea and then constipation. For a while I had ¬†break from slimming world and just decided to try and eat less in general until the steroids had tapered a bit more, been on 10mg of pred (steroid) still made it hard, and I still felt like I was carrying a lot of excess fluid.

So then I thought back to when I used to go to the gym….the gym….I trotted off to Asda and found a work out ‘tshirt’ with the slogan: ‘Don’t give up’.

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Something struck me. If I was gonna beat this thing, I had to start to look after myself. So slimming world and the gym..went hand in hand!

“So…just push?” “Yep thats it” pushhh “argh! Paul!!” As the chest press sprung back into place. “Good” he replied. It was my full induction at the end of the week…lord help us both I thought. Lol. It seemed my upper body which had not been affected by NMO had been over compensating somewhat, and I had gained strong upper body strength.

Don’t give up I thought, I can do this. There was something rather relaxing about this excercise malarky-I could switch off….or …could I.

Lovely sunny day outside I thought as I picked up speed on the treadmill. Oooh….I can turn the speed up…ok…..walking a bit faster…oooh beautiful blue sky….music on….lovely.

Oh my god!!! I’m going to run!! And…I can’t slow down…..do I reach for the emergency stop button or go with it….oh thank goodness…. it’s slowing down…..and I’m now going up hill…..ok….thats enough of that. Phew.

I looked at the swimming pool as I approached the leg press-‘one day-if I work really hard’ I thought. I had not swam for years…let alone stepped foot in a pool since I got ill….

Well I did it. I survived my first session….ish…lol. It felt good…I felt good….I knew at some point I would want to and need to get a new job, to play with James…to continue am dram…and I wanted to give myself a fighting chance of being able to stand physical activity/ies and increase my stamina in general.

It was around this time I started to listen to music more and found songs I could relate too or which inspired me.

2016 was going to be a good year. I could feel it.

 

 

 

 

Ooh, what a mean queen!

The decision had been made. I was to wean off steroids. Gradually. Slowly. Frustrating as this felt, I knew this was an extremely delicate situation which had to be handled carefully. The risk of a relapse, wheather that be optic neuritis (eye sight loss) or transverse myletis (paralysis), only time would tell. As desperate as I was to get off the damn things, my body would eventually have to kick in and produce its own steroid.

I was still raging hot, weight ever increasing, moon face, swollen feet and legs, and a small hump at the top of my back/neck. I felt so unattractive and uncomfortable BUT the end was in sight. Finally. After 12 months.

Winter approached which also brought with it panto season! My first main part after “being ill” I was to be the baddie, the evil queen wicked step mother with my drama group. I covered my moon face in white paint, eye lashes, glitter, a black wig, n a big dress. It provided escapism, and my wonderful friends were ever supportive. Even when my feet refused to wear shoes much longer and I resorted to converse. “Oh what a mean queen!!” I was sweaty, hot, and I laughed and laughed and laughed. To my friends I’m Jane, not NMO, not “diasbled” or “ill” not a moon face, just Jane.

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Following this was christmas, and my 30th birthday. At this point I felt so concious of what I was eating, desperate to get the weight off. My birthday was lovely, spending time with family. Inside, as morbid as it sounds, I was breaking down. I felt SO fed up. Who was this person looking back at me in the mirror? Who was I? I had a rare illness, some sought of weird feeling passed over me. Depression? Stress? Worry? A feeling of loss? Looking back now I should have cried and cried and cried and I just didn’t. Why? This my friends I have no answer for.

“Happy new year!” The end of 2015. Yay I thought to myself.

I knew one thing for sure. I’d had enough. Enough of being fed up, of feeling sick with meds, of being in pain-I ended up on tramadol for fuck’s sake cos the codeine wasn’t having any effect now.

I knew 2016 had to be better. I was due back in Liverpool in a few months at the walton centre.

2016 had to be better. It just had to be.