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.

So.

I guess that was it!

End of another chapter.

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

Wowww.

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.

So.

That’s it.

Recovered?

Recovered from a relapse?

Recovering?

Well….

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..

 

MOG: LOW POSITIVE

not positive like last time…LOW positive

 

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

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

 

EVERYTHING

 

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…

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….

Fooooddddd

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.

Well.

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”