All the things you said…

Hello all!

This part of my blog has had sooooo many titles in my head, it was a really difficult one to give a title. It perhaps shouldve been titled “untitled”.

What I wanted to talk about was the power of the mind. This is something that during my time of “being ill”.

Music became a good realease to me-I’ve always felt I can identify with lyrics in songs to some extent.

It was around the time I heard the song by TATU ‘all the things she said’ I had it blasting away in my car and misheard ‘she’ as ‘you’ after a few weeks of battling the title of this chapter, of re-writing it-that was it.

It just sometimes hits me now about how far I’ve come, and also what doctor’s say to me even now. At some point, somewhere…I stopped thinking of me having this “thing” this illness and just started living

I’m struggling to get this down even now.

Bottom line is, I never feel ‘ill’ unless I have overdone things-but my body in general copes well and it passess off so….untill I have to talk about it….I don’t think about it.

Sorry I am really struggling with this one!!


I am me…..I am not a patient….I am me!!!! I like quirky fashion…changing my hair….quirky shoes….I like wine…having a laugh…god dammit I like food….I like stand up comedy..the theatre…I watch you tube…I work and have a family!! And friends!!!

I am Jane. I AM NOT NMO.

Friends, wherever you are, what ever you are doing. For fuck’s sake (sorry mum n dad-whoopps!!)  DO NOT GIVE UP. DO NOT GIVE IN.

Please keep fighting, embrace what you can do, see your friends, have fun!! Spend time with your family.

Buy the shoes, drink the wine, eat the cake (or cheese in my case!) Live life. Love yourself and be kind to yourself. Take time to process things-I do!!! Hence listening to music.

Don’t stop believin (Journey).

Lets talk about……

Lets talk about….sex…..

Haha!!! Gotcha!

No-lets in fact talk about self image.

I am not going to particulary write about “body image” but self image. How YOU feel.

This was something that came very…hmm….poignant to me. How was I being viewed?? How did I view MYSELF. I don’t usually care what others think-but in those early days….was I being viewed as “that poor girl-stuck in a wheelchair” , “mind that lady”-as I clung to 2 walking sticks, bent over as my stomach muscles ached supporting me as my back was too weak.

The patient: “Mrs Cooper” which I wrote about, “Jane” when I met the walton centre team. “Just Jane” to my friends and family.

Who knows. A mix I guess-I mean its natural isn’t it? Human reaction? I never felt bad if people looked, I never felt bad towards them.

But how did I feel?

I kept photo’s of my face on my facebook page, so I could see the changes steroids were having on me “its me the moon!” Which I wrote about earlier.


I was very aware my weight was increasing and my body was doing it’s best to keep moving-you see, what people don’t see, is the un coperative bladder which retains fluid,  the cells in my body which hold fluid from the back being damaged, the pain, the bowels that seem to have their own agenda!!! The medication swimming around in me keeping me safe from my body attacking me again.


All they see is a 6ft curvy bird who us not skinny, has un ruly eyebrows which are often waxed I hasten to add, and crazy hair…hmmm that is due to be dyed and trimmed.

I felt for a long time I had a sign above my head saying “Hey!! I’ve got NMO!!!” “I’m disabled!!!” (Which I am), but I felt very very aware of it.

This is how my blog started. I had to pour all my thoughts and feelings out, instead of stewing over them.

So thats how I felt about others……but what did I see in the mirror.

To be frank: yellow skin-from being ill, dark circles, thin hair (it grew back), moon face. I got used to this and wore decent makeup.

My body….I would forgive anyone who thought I looked pregnant.

My tummy was covered….tops of my thighs…hips…in purple stretch marks. From gaining steroid weight FAST. A purple rash appeared from a skin infection following a UTI, I was un toned, bloated, and puffy.

Who is this???? I thought.

This is around the time I started to be well ish enough to go to the gym-“feeling the burn” for my health.

I put on…hmmm approx….5 stone, dark times to be honest!!!

This is why I struggle at times with weight now, I lost it all and finally… hair grew, palmers cocoa butter for stretch marks…worked. I started drinking more water, the rash went…..the steroids went….smaller clothes srarted to fit…I felt less tired….I had normal skin colour….

Come on I thought-you can do this!!! It took 2 years, and I finally took a selfie, put it on my facebook, someone said “oh wow you look beautiful”-I was gob smacked. For the first time, I saw ME looking back at me (I aint know size 10 so bare this in mind peeps!), but I saw me.

Chris always told me I look beautiful, nice, gorgeous etc and was always is very loving and affectionate.

The steroids stopped one month after I started work, I spent a lot of time weeing!!! My appetite was normal, clothes looked better.

I bought a pair of red glittery irregular choice heels…..beautiful…and they fit….and I could walk in them…..

Ive more changes even more recently which I will come to later.

So. Everything was going well. I met my team at work….I was happy.

So what happens next?