Have I just gone completley mad?



I am a meat eater, and have signed up for Veganuary….why?!

I want a challenge.

In October 2018 I did Sober October for and raised over £300.00 for NMO UK charity smashing my £100.00 target after some very kind donations.

So why vegan?

After eating a beef chilli con carne for tea….

It is this simple, a challenge, because apparantly recovering from a relapse is not enough of a challenge….I must be bloody bonkers.

In all honesty though, for a few months I have had quite a few meat free days, either having fish or veggie alternatives or just things like pasta etc. I started to struggle to fancy eating meat, and pondered about being veggie as I started to lose the taste or fancy a lot of meats.

I had also started to have dairy free milk alternatives on my cereal e.g almond milk as I was interested in the nutrition side of things and I liked the taste.

C and J will of course not be doing this, just me and I will be buying meat and dairy etc for them, this is purely my choice.

I certainly also won’t be sharing horror stories of animals etc anywhere, we all know what happens and we don’t need it to be broadcasted-personal choice-if you are vegan and do that, fine, but it’s not for me.



I also started looking into and have looked into diets reccomended for inflamatory illness’ and the impact of plant based diets can have on them in terms of anti inflamatory properties.

I am not gonna say “my body is a temple” but I am feeling soooo bloated and sluggish, I had started to chip away at my weight before I got ill, and steroids and christmas I have gained what I lost-bugger.

I have a fair chunk to chip away at for my height, and for my own self I want to get healthier.

I take so much medication at the moment, that hollisitically I need to start looking after myself now the dust is starting to settle.

I have some very exciting things planned for 2019, and one not be the size I am now for next Christmas/Birthday or New Year.

So I am not going to start hugging trees, or dancing in a forest naked around a bonfire,

but I am going to give this a good shot, and if I can raise money for the charity that supports me and others like me….

Then..well….why the hell not.


Thought for today,

Have a healthy enjoyable new year, I am escaping into a land of sweets and music tomorrow with J and my mum at the theatre,

I might even have an ice cream..last day of December tomorrow before Veganuary starts on 1st Jan 2019.

Wish me luck….



Soo….what happened…I got ill….quite ill….5 day course of antibiotics for a chest infection….

Why give up? I lasted 1 1/2 days ish..oh dear…

When I get ill with a cold etc I crave meat like crazy, I am on iron tablets at present but all I could think about was meat!!

Sorry animals.

The other thing that surprised me was how many things are suitable for vegetarian’s but not vegans…due to egg or milk content. Even my quorn mince is not vegan friendly.

I found vegan cheese ok grated on food…but I found the smell….very very strong not like cheese-to be polite, but it did taste ok!

Oatley milk was also ok and I still have some un opened so that’s ok…it was mainly the food.

So for now, I am eating meat, dairy etc but I am considering another part to my blog-all will be revealed soon…

Laugh until you cry…

The apprentice. Work.

When you laugh and you laugh with friends from work.

When laughter is therapeutic, when you last laughed hard was at work.

When work is therapeutic, when work is mentally stimulating. When you can be yourself at work, as well as the job role, you know you got it.

When the job role is part of you, and not just NMO, when you ARE YOU, yourself, it is incredibly satisfying.

When you laugh harder than you can ever imagine at work-“you know you got it, when it makes you feel good”.20181220_100311

(Bright eyed meeting friends for coffee and a big rest after!!)

So what happens when you find yourself slowly going down hill? Kidding yourself you are ok? That this pain is “normal” that popping ibuprofen and paracetamol regulary is normal?

Surely everybody does this? Don’t they?

Apparantly not…no.

When you realise actually….actually….you are not coping physically.

That work is good, home life is good,


my body was not good.


Yes I had started to lose weight-fab….but…oh my god…the pain.

Sorry I keep banging on about this…I had a part in a local panto and was really enjoying it, the laughter and social inreraction was doing me the world of good…until…I had to drop out…devasted. I started not being able to walk properly, steps were an issue, everything was getting to be a problem-physically. The group were very supportive, and accomodating, but I just couldn’t keep up.

The laughter, yes.

Physically, no.


C and J new I was struggling. C even said he was worried-and if he was worried, I knew I bloody was.

Fave magazine and flowers off C and J it really did cheer me up,  it really really did.

So what happens when you do give in…accept you are not well…that THIS IS HAPPENING.

Cry? Swear? Shout? cry some more? Pray? Ask the universe for help? All of those?

I opted for all of those.


I didn’t want to give in.


Never give in.


Never give up.


Never stop fighting.




Let it go….

How do you start to let go of what happened?

It is not very often I get what some would say ‘flash backs’ now the rawness has gone-the sting of certain dates….no.


You see friends, the picture above is when I was still extremeley bad on my legs in 2014-2015.

The crutches in the back ground went nicely with the wheel chair, walking sticks, blue badge and a bag of meds.



This I think will be called “the face of fatigue”

So what I have found recently is I need to rememeber I now no longer look like this…but this…


Taken in the QMC after 1 night lf I.V…or like this…


Or….like this…20181225_205257


So, why do I take so many photo’s of myself?

Vanity? insecurity? curiosity? my love of alternative plus size fashion?

No. Sometimes with NMO neuromyeltis optica, you can lose sight of yourself, image, size, fashion, pain whatever it may be.

So what I do is take photo’s of myself to remind me I am still me. Too show the good days, the not so good days, favourite outfits, and yes my changing face of steroids.

Recently dear friends, I have had some lovely compliments on how well I am looking. As I write this, I feel absoloutley worn out, but….I do agree.

My eyes have been commented on several times, about how more happy and “alive” I look.


This photo was taken 2 weeks before I went into hospital with my relapse. J had given me his sticker from the dentist, and looking at this now…do you know what I see?

Pain. Exhaustion. Fatigue. A proud mummy.

It had been my day off work, and all I had done was sit and sleep, and later taken J to the dentist after school as well as myself.

The eye thing…my mum has commented in the past abouty eyes looking a bit…uneven…and yes she is right, sometimes they do especially if I am tired, the left one the eyelid will close slightly. I am also due for an eye test as I am sure my prescription has changed, but eyes can say a lot about a person.

A few people have said that they could tell by eyes I was in pain-dead give away huh?

When you get so used to blocking pain out to be “normal”-doesn’t work does it?

So one thing I have learnt since my relapse, is too flippin’ say “my back/legs/hips etc hurt”, to make sure I take tablets on time, to say “I need to have a rest”-not just to plough on regardless.

I was always so keen to “get back to normal” “be normal” which is great…but…..I know I HAVE to to take my time.

So today is my birthday, I am up early with steroids n slight headache from Prosecco consumption from Boxing day yesturday, and I am going to have a nice chilled day with my family.

So like I have said before,

Learn to ride the waves, don’t be afraid to ask for help or say you don’t feel well even though you might look it.

One final thing…



“Snaps” for Tesco…bravo on your new toilet sign-I will be emailing to say thank you! I have had fumny looks in the past for using a disabled toilet, it is refreshing to see this more and more, this was taken yesturday.

Until next time.

Have yourself a merry little Christmas



Merry Christmas everyone, here I am in full Christmas steroid glory.

I have had a glass of wine or 2, lovely food, lovely presents, in 1950’s rockabilly fashion dress and petticoat, red sparkly converse are on the naughty step after cuutting my foot yesturday!

I am bigger in size than I wanted to be as I am spending the week on 40mg pred…


I am home with my family, not sat in hospital in the QMC or elsewhere for physical rehab.

My face hurts from blowing up-bang went Jane lol.

But…it is Christmas.

Pace yourseleves, make time to rest, try not to over do things, and don’t be afraid to say “no”-or have a sit down.

I look ok to a point but I have had times today and last few days where I have not.

Don’t be too quick to judge what you can’t see.

Gabapentin has featured as usual today and has been helping enourmously with nerve pain and “buzzing” in my feet and ankles.

So all that’s left to say is….


Have a very merry Christmas xx

Wake me up when it’s all over…


A few weeks ago, I wrote a blog post called “let it go” and the power of song lyrics and how I or you can relate to them.

I published it, the next day, read it, and deleted it from my blog.


It was just too raw to read, although a few had read it.

The last few weeks..well..

It’s like riding a wave in a storm…

A few weeks on and now out of hospital, I am revisiting this post.


Several after these were too painful too finish, but at the moment, this seems quite poignoint-if that’s how you spell it…

What I wanted to touch on, was feeling tired, fatigue, pacing yourself.


At the moment, I feel like….like….a salmon trying to swim upstream. That every so often, I can jump a bit further, but then someone decides I look a bit tasty, and I get hooked onto a fishing rod or in a net-stuck.

Trying to explain to someone what NMO is, but then trying to explain how the bloody thing (sorry mum n dad lol), affects you, and let a lone after a sodding relapse, is INCREDIBLY HARD.

I think C hit the nail on the head the other day when he compared it to having a stroke.

You imagine that you go from “being physically normal” and indeed mentally, to find all that will change out of the blue thank you very much and your “normal” activities including bending down to the washing machine now seem damn near impossible.

What do you do when you are so tired you could just fall asleep anywhere, but your little one just wants you to play…




You get a grip. Have a cup of tea and make sure you have taken and take your medication on time.

The photo’s here are real, snapped to show how fatigue can make you feel, so this mummy does need to rest, but, I will NEVER stop fighting this illness.


I have a son. I am a mummy. I am not NMO.



“Hi everybody, welcome to my Youtube channel!”

20181212_102918Wow it’s sunny today

Do I do this now…do I…don’t I…oh sod.

“Hi Youtube and welcome to my Youtube channel: notmuchordinary NMO”.

Oh god, first video made. Uploaded…shared on Facebook….will people watch? Will they subscribe?

Oh god…someone has watched!! Yayyy!!!

You see dear readers, blogs and Youtube have been and are so important to me in my life. Nights where insomnia hits, or I’m not very sleepy, or maybe I just don’t want to watch the tele, or when I have been in hospital, and when my son was a baby and I was doing night feeds, escaping into someone else’s life can be very relaxing.

There is sooooo much out there, from hair dye tutorials, fashion hauls, christmas videos, vlogs, diet videos, the list goes on and on and on.

What I was finding though with NMO there were not many “general” chatty videos. I love blogging and long may it continue, so I thought…why not show the nutter behind this writing. Haha.

So I thought, well, why not take the plunge and get going with it to reach out to others with NMO, their family, friends or those who are curious to what it might be and how it can affect people.

Instead of painting a perfect made up make up face, I decided I would make videos to show the real me, likey blog. Moon face, steroid acne, make up free face in all it’s glory. Aswell as showing days when I do feel better and things that help me.

So, if you fancy hearing the voice and the NMO face behind this blog…why not check me out on Youtube notmuchordinary NMO.



My NMO body needs to wrap some christmas presents at some point soon…so…..have a Merry Christmas if we don’t chat before.








Suddenly…I see….

What does it feel like when the fog clears?

Odd. Really, really odd.

The last few days, I have had this strange sought of clarity and energy come over me.

Energy-hmm I don’t mean that everything is normal hunky dory and back on track, but like a fog has cleared.

This energy I know all too well, and at this time, dear readers, some of you might know what I mean. This is a crucial time….not to be fooled by.

This energy I am speaking of, can also be reffered to as “predisonolone”-steroids.


You see the thing is, I am so lucky I react well to them-but imagine having peaks of feeling like absoloute crap, to overwhelming bursts of wanting to take on the world and his wife.

Do not be fooled.

Yes, I try to do bits and bobs-and I mean bits and bobs e.g putting some washing in the washing machine followed by a good long sit down to some crappy tele.

After the energy has passed can come fatigue, pacing I find ok and boy do I know when I don’t!


Insomnia is rife at the moment due to pred, and I find it easier functioning on a few hours sleep, and resting in the day than forcing my eyes shut and trying to switch off to no avail.

As I type now, I have had 5 hours sleep, I have just sat for quite some time drinking tea, and I know my lunch time gabapentin is due as my left toes are tingling-constantly. I have done nothing to trigger this reaction, it is purely due to the leison on my spinal cord.

I have spent the last few days, really contemplating on things. I say things, because I could be here forever listing what those “things” are.

It’s really dawned on me, how poorly I have been feeling and for how long.

So much has happened to me physically, and a few times I have gone to write on here and just not completed a post, or felt inspired.

One I have just looked at I had written :

“converse and insoles”-converse are not that great for your feet-un quote: from my podiatrist.

I have been told that I have hypermobility and that’s why I walk funny, need insoles, knees go back too far when I walk….

So what happens when…you accept this… very uncomfortable wearing said insoles in your trainers; experience more pain and just know it’s not right.

What happens when you relapse, have steroids and your knees stop playing silly buggers. That your feet stop rolling in, that YOU CAN walk in converse-comfortably actually with no insoles.

When you stop doing painful physio excercises, and realise you can walk more easily now you are recovering without the need of having to lie down 3 times a day and fling your legs up into the air “to get control and strength”.



So what is the answer?


Buy red sequin converse to wear around christmas time of course….