I am not a happy fat person and I am not a fat happy person…



Here we go again.

Body image. Weight loss. Scales. Measurements. Excercise. Bloody steroids.


Those of you who know me or have met me know what I look like, and my personality.

I cannot remember hand on heart when I said “I look awful I need to lose weight”

Yes I have been…and why? I felt uncomfortable and it wasn’t me in the mirror-it was steroids.




I am generally a happy person! I am curvy-not fat! Thank you!

I have big boobs, a big bum, big hips, a small waist and a big smile.

I have an even bigger personality and an even louder laugh!

This dear readers is by no means a mask, or a front, or a wall or a shield.

This is who I am!

I see a strong woman who has learnt to walk again-twice now, has regained her sight, and I am bloody proud of her.

I celebrate life by being me!! Living it well!!

So when I see my tummy wobbling around, I remind myself that it is toning up now my back is strong enough to support itself again. That my stomach muscles are no longer straining to keep me up right because my spinal cord is damaged with fluid leisons.

I like quirky fashion and things in general-always have and always will! I am not a jeans n nice top kinda girl!

Again I am just comfy and happy in what I wear.


I am steadily losing weight to ease my joints, to hopefully lower med doses in the future and too feel physically good for ME.

Not because society thinks I should.


I am happy, I am not a fat person.

I am curvy, and happy.

Is there life on Mars?




So David Bowie, is there life on Mars?

These lyrics really….spoke out to me recently….a few things have happened recently, and some of this seems very poignont…I hope that’s how you spell it….hmmm

Some of it I can’t talk about on here, but it really opened my eyes to a few things.

It is also now 6 1/2 months since the relapse. When I first got ill my O.T said “6 months is like a catylyst-you go one way or another” and how right she was.

So like anyone else who has been through a trauma, mentally I have been playing catch up. I also wanted to rid myself of anything on me or anything that reminded me of being ill.


1 big change…my hair.

I went from this…extensions in QMC hospital pic…resting after a shower before the steroids took hold…


To this ..


Out of hospital…face is rounder…thanks pred…



To this…


I liked the long hair but I started to feek swamped.

All I could see was someone else. A steroid pumped poorly person hiding a moon face behind masses of extensions in a bid to feel more….feminine I guess!

So something had to change!!

The extensions went in 2 weeks before I got ill…so that was it!!


God my head felt light!! But it still wasn’t me…



All of a sudden…it was like a switch…BOOM!!! CONFIDENCE!!

Who knew a hair colour would or could affect you so much??

Well…clearly it did!! I think it’s part of who I am, as much as quirky fashion is!

So is there life on Mars?

I am going to say…YES!!

BUT it takes time to adjust.


At the moment I am still on steroids 15mg pred daily plus azathioprine.

I miss: my ankles!! my face! my chin! not being BOILING ALL THE TIME!!

What I am thank ful for: well pred, we have been here before haven’t we…

I thank you pred for saving me, for taking the most awful back pain away and stopping the “banding”-banding FYI I have only had during a T.M attack the 1st time I thought it was a heart attack…I couldn’t breathe for something squashing my rib cage it was awful.

The 2nd time…I just stayed calm and it passed.

So…all of that….and yes…there is life on Mars and from where I’m standing…it’s not bad…not bad at all…

Converse…and insoles..

So converse aren’t that great for your feet-


This dear readers is a blog post that I started writing in November 2018…ans we all know what jolly happened then don’t we…

Why did I stop writing this one?

Simple answer: it was too bloody painful.


So…on a lighter note! This is how I am feeling at the moment. Hehe.

I do actually feel better in myself and feel happy, and content.

Next week I am having my extensions out…I first had them put in last year approx 2 weeks before I started to relapse. To have them taken out almost feels cathartic.


Current hair…it wasn’t cheap…but….it’s not like looking at me in the mirror…I don’t know…it’s like I see the ill.me from 2014/2015…I will add some pics…


Then….something exciting happened recently…


This face appareed and is appearing in the latest NMO UK charity magazine with an article I wrote about my blooging and my Youtube channel not much ordinary NMO!

So brown hair came after unicorn my little pony hair…

On the inside and most likely the faces I pull the most are…


Hheheee looking forward to getting back to look more like “my normal”.

I am sure my work colleagues have seen this face a few times lol.


Extensions. Moon face. Moon face wkll go eventually when I am off the bloody steroids, and extensions are going next week…brown hair will go shortly after.

Time to let go mentally of the last few months and look forward to the future.


Box life…

So what happens when you find yourself being packaged up and put into a box?

Metaphorically I mean-lol

Although…the thought of popping a shit load of bubble wrap does sound rather fun! I mean, who doesn’t love bubble wrap?

Or….is that too much…oohhhh packing peanuts!! Heehee why are they called peanuts any way?

For the love of god…pleaseeeee do not wrap FRAGILE tape around me…which leads me onto my blog post.


Just recently a few things have happened where I am starting to feel I have been plopped into a “sick and disabled box” weather I like it or not.

For those of you who know me….I am sure you will know already this has not gone down well. For my lovely regular readers….I am sure you understand this too…


At other times being in a “box” can be quite useful, parking with a blue badge for example is enourmously helpful with being able to get it and out of a car comfortably and not having as far too walk to e.g a shop.

Sure some days it might be easier than others, but after having a plonk round a few shops I am always greatful my car is not the other side of a car park slammed up another car trying to twist my back to get into it.

I went car shopping with C and J the other day, I tried sitting in a bright red new style sport fiesta…with…bucket seats….J thought it was amazing because it was his favourite colour..red. I also thought it was lovely…until…..I tried to get out…there’s nothing quite like trying to look dignified scrambling out of a car saying “errr no…” and yes I did laugh quite a lot.

C suggested trying a few other styles pf car and needless to say cars with a higher seating position were better…and no…I didn’t get stuck….I have however taking a shine to Nissan Juke’s!


It’s almost 5 months now since my relapse in Novemner 2018, I think I have gone through the process of shock, anger, frustration, upset, positivity, negativity, viewing myself differently.

What I hope, and what I feel like even more recently, is I feel like me again, I haven’t lost sight of myself.

So here’s to the next 5 months…


Come alive…come alive…


So that was it.

I was back at work and it fet like no time had passed. It was like I had just been off on holiday for a week.

I was feeling quite anxious before I went back, although I no need to be.

So work so far is all good.

Things were changing in my personal life too, or not things..me.


This sought of….fog…cleared…or  I should say has recently cleared.

It’s like…that was then and this is now…I am back feeling like I was before I got ill. Not physically…but getting there…but mentally…yes.

I just feel…at peace with myself.

New meds seem to be suiting! hurrah! Something else also happened….


I love this outfit, I love my bridesmaid sash, I like my extensions, I had a super day and most importantly my best friend did.

But…that face…the smile is genuine…but for me I felt like I was staring back at 2015 moon face.

I faced the scales and that also echoed what I was feeling.

No more. Not again.

Fast forward 4 weeks and….



1 stone 2 1bs down and counting and I am so happy.

Sometimes the battle is with pain, sometimes with medication, sometimes mentally.

Sometimes the battle is with ourselves. How we feel, how we see ourselves.

I never ever want to see those numbers on scales again.

I don’t ever want to feel like that again that all I could see was steroids.


Here’s to health, happiness, not hiding and being yourself.

I feel like I have come alive, that the future is exciting and I don’t have to be that size any more.

That life is back to normal and so far 2019 you’re shaping up to be quite good!


Do what makes you happy, be kind to yourself and never give up.

See you on the Flip Flop



I guess that was it!

End of another chapter.

The best parts of 5 months…blink…and it’s gone.


I am sat here having an evening off slimming world,drinking some wine, just thinking about the last few months.

“I’ll see you on the flip flop” came the familiar voice. Fin (pseudo name) had rang to confirm I was ok with a few things, “yeah, I’ll see you then!” I replied gleefully.

See you on Friday…at work…

This waw it.

Crunch time.



That’s it.


Recovered from a relapse?



Lets say…recovering…

Menatally I have played catch up and I think more so recently. Cudos to my big sister, she is one of the few people who makes me laugh soooo hard, I think I could be sick! She has been there, despite all the shit she is going through, (don’t cry!!), she always knows what to say, or to send me, or lovely things to look at, and understands I can’t always look at my phone.

Why can’t I you may ask…

Being a mummy…and uh hummm glasses…I wear them sometimes only for driving and computers..but also…the brightness of the screen.

Physically…bar a sprained ankle…yes..really!


I’m doing good…

Letters from hospital..


What did they say?

A lot.

One thing stood out..



not positive like last time…LOW positive


Maybe moon face for the second time is worth it after all…

As time goes by…


So I was talking to my big sister the other day, and we spoke about day today life, and how we cope or manage things when health is playing an impact.

Time they say is a healer, and in all honesty, I have found this to be true.

With the relapse of 2018, I have spent all these months…fighting. Again.

Physically and mentally.

Menatally in as much as putting EVERYTHING i’ve got into getting bettee, all my fight even when I couldn’t, whem I felt I just couldn’t KEEP pushing myself over and over and over.

Yes fatigue, yes pain, but what about LIFE?!

Body image, body perception, how I viewed myself and how others would view me.

Stick…no stick…weight gain…steroids…confidence




There were some dark times, and good times, I refused to give in or up, and I am pleased to say dear readers, I finally feel like me again.

It has taken a lot of soul searching, a trip to the hairdressers….leaving a few facebook groups about dieting, a lot of grit and sheer bloody mindfulness…but…here I am!!



Wallow in self pity?

Let thoughts consume you?

Allow obsession with losing steroid weight or weight in general to annoy you to the point you get cross?

Or focus on the future…

So life isn’t all shits and giggles, sometimes I don’t have the energy to piss rainbows,

But…with good friends, family….if you are struggling…you will get there.

Be you, be proud of who you are,

Do not let anyone or anything drag you down…if it does…do something about it.

Peace out…

Oooh this is a dear diary moment…again because I think we have already had one…hehe

So. I  am sat here watching some sort of young children’s programme which reminds me of how I feel when I first start on Gabapentin or any other strong pain killer…kind of…floaty….haha.

Lets talk about….



Why do I want to talk about food..because I love food…

Pain…oh my gosh sooo much pain….my left foot and back have been really playing up, I think just because I have been walking more and un aided.

I could talk all day about food, body image, (hmm that has given me an idea…!), but what I wanted to talk about was how I have been feeling recently.


Not too bad, up and down days, with fatigue or pain, or just in general. My foot I am pleased to say dear readers has finally just about…settled…dare I say….

My back is still nagging away which is anniyoing but I am used to it, and I am beginning to start the countdown to going back to work-which I am looking forward to.

Why? You may ask. I like my job, I am lucky, not two days are the same and my work mates are great.

Going to work is “normal” and I always look to see what I can do…not what I can’t do..


It really hit me recently about what happened with my relapse, what might have been, what life could have been like, what might might of happened, how I was feeling, and what might have been.

My memory is still not 100%-for example I have forgotten AGAIN to biy new concealer and powder because mine has run out-and where have I just been? Jolly ASDA. I did however remember to put my repeat prescription in at the doctors-winning! So the nice dr at the QMC later will just have to see me looking like something from the crypt. Haha.

Mentally I have been playing catch up, it’s been 84 years since I…oh hold on…that’s not right…that’s from Titanic…

Huh hum.

It’s been four months since the relapse of 2018, I go to 15mg pred tomorrow, and 3 azathioprine daily-yippee dee.

So far though..so good…


So on that note…I am off to charge my phone, and have a cup of tea.


In the words of Bill and Ted:

“Be excellent to each other”



Hopping, and Pink hair….







Sooo the old hair had to go…..it felt good…great in fact!! This is ME not brown, sure it did my hair some goid having a bleach break but this is much more me!


“can you hop?” asked Dr. D…”hop?!” “yes” “errmmmmm…..” I did…kind of….kind of….my left leg was oddly better than the right…..

A good examination in Liverpool and a plan of action to start some new medication-more on that another time.

This has been drafted sooooo many times.


Because I only write when I feel inspired too.


Today, something happened that inspired me.


These are from my work mates.

I am not gonna lie, I filled up.

I miss my friends, my job, the structure, I cannot wait to go back…BUT as always with this bloody illness-when I can..when it’s safe too…but I can’t wait.

This last week especially I have been steuggling a bit. One of my old work mates passed away, after a short but awful illness, only in his 40’s. Really awful. Very sad.

I also have found myself obsessing over my weight, which is not like me. I don’t know why…or…do I.

Of course I do.

Bloody steroids. Simple as.

Because (I know that’s not good grammar but it is my blog!), when I look in the mirror I see…sometimes…me when I was on steroids before. I have only been out of hospital for 6 weeks and I am progressing well this is also why. I want to be the Jane I was before I got ill again.

In all sense though, I have 2 more weeks before steroids decrease again, and I need not to be as hard on myself.

The weight will come off, but wanting quick results and fast is not the answer.

I take currently take between 20-25 tablets EVERY DAY if not more depending on pain levels.

On top of that, I am still trying to heal, be a mum, prepare myself mentally to go back to work, do housework, “do normal stuff”, look nice, lose weight, walk properly.

No pressure eh?

So. Tomorrow, and next week, and going forward…no more pressure on myself.

I’m done trying to “look a certain way because I am on steroids”,

So no more fad dieting.

I promise myself now.


War paint…

Hello all!

War paint…and guys yes this applies to you to so don’t go running off…!

Make up….hair…clothes even…lets start with make up.

As a lady who is now steadily past 30-(cough cough), it is natural that one wants to cover ones ‘imperfections’. For me it’s usually spots and under eye circles. Just for me so when I look on the mirror I don’t resemble something that has come from the crypt.

I have a very basic quick make up routine, I don’t contour (no idea how too) and being a mummy I just don’t have time.

I do find if I don’t wear anything people ask me more if I am feeling ok….I had some rather funny looks in Tesco the other day lol.

Estee Lauder double wear foundation is my go to-sorry £8.00 Asda emergency back up your just not doing it.Then just concealer, powder, blush, mascara, lippy. Done. This can then be found half rubbed around my eyes later that day when I have forgotten I am wearing mascara…



So war paint?? Why do we call it that? For me it’s just a joke, a term that is thrown around in society. I will wear a bit more if I am going “out out”-glitter usually…but that’s it.

When I came out of hospital after my relapse, after 2 days my mum helped me shower-where I managed to bring down their shower curtain (whoopppssss) 6ft size 20 bird in a shower cubicle with wobbly legs…my mum didn’t bat an eyelid and reassured me it had happened before.. (note: they are now having a new ensuite-note: I didn’t break the ensuite lol).

After that though, I dried my hair, curled it and put some slap on. It took AGES as I was having to rest in between. Then I put on a favourite dress, and looked in the mirror and took a deep breath. Phew. For the first time in a few weeks I saw a bit more of me looking back, weeks of jogger trousers, tunics, hair tied up, minimal make up-it was nice to see a change.

In my youtube video’s I now make on notmuchordinary NMO, I don’t always wear make up or have my hair done. Why? Because I want to keep it real. How can I show a picture of “looking nice” and it seeming that’s how I always look….no. NMO is not like that.

I am sat in my p.j’s, my hair in plaits writing this. It’s early Sunday morning, J and C are in bed, I am awake because my back and hips hurt.

Ooh here comes J..

Right. Anyway. Where were we?

Oh yes.

So…when your body feels like this…


Then why wouldn’t you want to sometimes want to wear some war paint? Just to look a bit more “normal” or “healthy” don’t get me wrong…this doesn’t always work…many a time I have put make up on, done my hair and I STILL look knackered. Sometimes though it’s just nice to make an effort for YOU or your spouse.

I have touched on my hair before in previous blog posts, currently my hair is…fine….but it’s not ME I know I have spoken before about self identity and I know at the moment what I see is not neccesairly ME-nothing to do with my weight…it’s how I see ME and at the moment I see me how I looked on steroids in 2015…because my hair looks similar, or a very young playing it safe with hair Jane.

Another chronic illness blogger wrote recently about “losing yourself” with a chronic illness. She is so right.

As I start to feel better…more and more of me is emerging, I am not forcing anything it’s just how I feel.

I currently have bright pink and turquoise nails with glitter and fruit on, and last night I ordered a leopard print jumper and I know what I want my hair to look like.

This is not a mask-it’s because that’s what I like.

A mask for me would be wearing jeans (I never wear them), a plain top, and simple hair, or leggings hoody and a plain top. Do you see the difference?-that’s when I want to blend into the back ground when I feel ill.

That’s ill Jane, not ME.

So what I have learnt with a chronic illness, is sometimes you can lose sight of yourself, confidence can take a dip, but when you start to feel better…you WILL know.

You will feel it in your heart, you will feel it in your mind, and you will see it in your eyes.

Here’s to the future, and…pink hair…