“Don’t look back in anger…don’t look back in anger I heard you say”

The photo I took the other day…the face of anticipation, the day of reckoning, the day I would find out if the team at the Walton Centre would agree to me decreasing and weaning off steroids.

I was full of excitment, slight anxiety, and just general wonderment.

So why this song? Why “don’t look back in anger”? Music lyrics often express what we can’t say. I have been angry about my health and health situation, yes I am generally positive but the last 7 months I have experienced plenty of ups and downs.

Don’t look back in anger, it feels like the end to an awful storm. A blip in a short period of time. The mental fog has cleared, I feel happy.

I feel like me.

“You look really well!” S said. “Ahh thank you” I replied gushing.

S and T 2 of the lovely NMO nurses, it was so good too see them. For them to see the difference in me since the NMO UK patients day in April. To just see 2 medical professionals who understand.

The news was good.

Another 6 weeks on azathioprine then to start a steady taper to decrease steroids, and go from there at a certain dose.

So cheers to you NMO.

I am no longer looking back in anger, the calm has come. My mind is no longer racing of what could have been. I hace taken stock that I feel better now than I did this time last year.

C and J have been amazing as usual. Their supoort is amazing.

My family also, my friends, my work mates, my facebook friends, those with NMO.

I also want to thank myself for not giving up. For not giving in.

It’s all going to be ok, don’t look back in anger.

I have let go, finally.

Time to continuing enjoying life.

 

So no one told you life was gonna be this way…

When the rain starts to pour….

I was talking with a friend the other day and I said about friendship, and how you learn when the shit hits the pan, (sorry mum and dad-lol) who your real friends are.

I am lucky that I have friends so close to me I can’t remember life without them. They are always there, as I am for them and always will be. Tea, coffee, food, gin, wine-I see a pattern here…haha nights out, afternoon teas, meals  theatre, fun.

I have made new friends since J started school, who also saw me at my worst on school runs and always offered and do offer support, a chat, coffee, play dates, a listening ear.

My work mates who just “get me” who accept me for me my pink hair, loud laugh, converse, quirks and all. My work mates are great, very supportive and very funny.

I thought I had a group of friends at one time but I realised that if I wasn’t around, I was soon forgotton. I don’t mean seeing them but a comment on facebook, a message doesn’t take long does it?!

Perhaps they had me boxed off as the one who was ill so that was that ans the click was clicked tightly, me being un clicked.

Then…there is facebook and facebook groups…

I am very fortunate dear readers, to have met and spoken to some loveoy people, through clothes groups and also NMO facebook groups. Support online through such sources can be great.

So in life, things happen, people change, things change.

People come and go in life, and those you haven’t seen for some time and thet say “how are you?!” I reply “yeah good thanks, you?”

Why?

I wrote a blog post on this a while ago, but real friends understand when we are not at our best, and others will get the “fine” response.

So…….be yourself…let those go who are no longer there for you…don’t force it…be you…and……

 

Hi.

So.

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.

So.

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.

So.

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.

So.

I am happy, I am not a fat person.

I am curvy, and happy.

Music.

Lyrics.

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…

This…!

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…

Sooooo…

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.

Again.

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…

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.

So.

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.

 

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.

So.

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…

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.

So.

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.