Where’s the meat….? Where’s the soap…toilet paper….

What’s going on….

Errrmmm ok…chicken….why are people going mad buying food in Tesco?

“err mum…there’s no chicken in Tesco…at all…it’s really weird” I said to her down the phone.

“oh hold on! I’ve got a hot cooked one a big chicken-just thought I’d better ring and warn you with you shopping today”

This is weird…

Ok…do I need more food?! Loo roll…ok…right. Done.

The next day continued as normal, J went to school, C at work, my day off and work the next day-ha-so I thought.

Hmmm Dr H is late phoning, it does feel weird having a phone appointment with the Walton centre, not face to to face.

I feel…weird…not in a good way.

“So, Jane! The coronavirus!-” “yesssss” It was 17th March 2020, a mild Tuesday afternoon and little did I know life was going to be verrryyyy different.

“so due to your medication…and being pregnant….YOU NEED TO START SELF ISOLATING FOR 12 WEEKS STARTING NOW”

silence.

“I beg your pardon?” I squeaked.

BOOOM.

No work.

No shopping.

No seeing friends and family.

No school runs.

I could feel my pulse thudding in my head.

“ok yes of course, I understand”.

12 weeks.

I am having a baby in April.

Work?!

Maternity leave?!

J?

C?

What the fuck am I going to do.

“I’ve got to self isolate…NOW”

My mum, dad, C all understood albeit a bit shocked.

In fact writing this now is making me feel a bit funny.

Right ok I’m back! Had to stop last night.

Dr H’s words rang in my head like a clanging bell.

12 weeks.

Food shopping?!

Quick book a Tesco delivery slot….3 weeks away?!

Wtf?!

No activities for J..and now..no school…

Home schooling at 8 months pregnant.

No work-vulnerable shielding group.

C at work-a key worker…I am too if I wasn’t on immune suppresents and steroids I would be working…if I wasn’t going on maternity leave I would be working….

England suddenly felt…united…”helping the cause”

Then Boris Johnson said those words

LOCKDOWN

Strict rules to be in place.

Hospital rules changed dramatically, C was issued with a letter stating who he works for and is aiding the COVID-19 cause incase he got stopped by the police when travelling to and from work.

Collegaues being sent home due to health conditions, people losing jobs, money, children wondering what on earth was going on. No school but not school holidays…

Panic buying, pictures of rainbows being displayed in windows children had made as a symbol of hope, peace, and safety.

The NHS being in the spotlight as much as the government.

Daily news confrences….I started to panic.

Badly.

“I don’t feel very well” as I cried down…no sobbed down the phone to my mum and C.

J cuddled me and I kept saying sorry to him.

My back and hips were playing up BIG STYLE.

A fog had set in…an all too familiar fog.

I felt like I was cracking up.

The extensions had to come out which felt awful. No choice as no chance of refits now.

Then the government letters started ramming it down my throat I MUST NOT GO OUT

I KNOW!!! I screamed to myself.

I could not stop this ringing in my head a rusty clanging bell…my chest hurt, I was tired, awful acid reflux and too much Facebook.

“Your BP is high”

Shit what have I done.

I had got in such a twist about the media and coronavirus I had missed signs my blood pressure was creeping up.

I looked a mess.

I felt a mess.

A few hospital visits later, a chat with my consultant about being pregnant in a pandemic and telling C how I was feeling…some BP tablets and I started to feel better.

I unfollowed Facebook groups and pages, turned the news off, stopped obsessing about hospital changes and instead recorded on my calenders when the 12 weeks will be up.

J was enjoying home schooling and C took some time off work.

Having him around as I got increasingly more pregnant helped massively.

I was not worrying about him at work and it gave me a break.

J loves C being at home!

So now things are starting to get back to normal.

I dyed my hair, had a sort out and baby girl is due next week!

So what’s next…?

Boo!

HELLOOOO ANYBODY THERE…?!

Wowwww how long has it been??

And who is this??!!

Where has she gone??!!

And can you believe this title was written in 2019?!

Just shortly after I had pretty much recovered from my relapse.

So why has my weight suddenly become so important to me?

I have been over weight for years with varying degree and varying stages of life.

So when I fell pregnant with this one, it was pretty much rammed down my throat that I would most likely have high blood pressure, gestational diabetis and complications because of my weight.

Funny how NMO never came into the equation isn’t it?

So for my own mobility, self esteeem and health generally I started losing weight.

I had the diabetis test fully expecting to have it…if anything else due to the steroids…

Nope.

All clear.

Yep all clear.

“Are you sure???!!” “yes…totally well within the healthy range”

It was such a relief.

1 or 2 growth scans I had mentioned my “raised BMI” -no shit sherlock. This was mentioned several times.

One day, I had an appointment with a aneathatist.

“so you’ve got this myleitis optica…errr neurological errr”

oh for fuck sake.

Que me as we all know by now summing up the last 8 years of my life in 5 minutes.

“aha….right”

“So the NMO and the BMI” -Perhaps I should ask for a pound like a swear box for every time my weight or BMI is mentioned.

We discussed my weight…of course…the NMO and the birth.

A few weeks passed, a few queries with Walton Centre and another appointment came through.

Once I told her how much weight I had lost…and I am on steroids…well what a change.

For the better.

I was praised for the weight loss….and told how well I look…and NMO was given it’s correct name…not a jumble of words.

So that was that.

Fast forward a few weeks…and here we are!!

I am going to end this post now…but you get the idea what has been going on….

So….yes…

Anyone who wishes to mention my BMI or being overweight , donations will kindly be donated to NMO UK charity (haha!)

£1 for BMI

£1 for being over weight

Just giving page details to follow or can be donated to the charity via their website.

Haha-I joke of course.

x

It was like a light bulb being switched on.

As I laughed with C, I think it dawned on him that I was taking that idea seriously.

Yes…..being pregnant with NMO….why have I not explored this more…

So let me take you back to July 2018 and a visit to the Walton Centre.

“Yes when you are ready that’s fine”

So.

Good I thought, I can’t wait to tell C.

My mum and dad were both naturally anxious about this.

Medication, the effect on me, a lot of what if’s…I am on azathioprine and steroids still currently and both I have been told are safe in pregnancy.

The steroids are acting as another safety net incase MOG is encouraged to act by the birth also…so theory is I am on so much stuff this shouldn’t happen.

What would C say? I think I already knew the anwer.

We fully prepared ourselves to be have a wait, my body had been through some severe trauma with the paralysis…although my periods had been regular and on time…almost like clock work.

I had taken to popping on my calender on my phone when I started one so I could count the weeks in between. Why you may ask?

Well.

My periods stopped pretty much in 2014 when I was first paralysed and it tool a while for this to settle into a rhythm from light to very heavy then somewhere normal.

So, off the 3 of us went on holiday to one of our favourite places! Butlins!

First picture here was taken in their fantastic circus and the second was taken on the beach where I happily felt the sand between my toes (check out my blog post ) as I looked out over the sea I felt so content knowing we had been given the all clear to try for a baby. We had an amazing holiday C and J and myself

So…one day I thought to myself..my period is 4 days late…4 days…this was a few weeks after our holiday and the day before our 10 year wedding anniversary.

Late.

Do I? or Don’t I?

I had been feeling a little out of sorts but with NMO that’s normal…

“Mum…I think I am gonna have to do a test”.

I talked to J who was desperate for a sibling.

1 pink line…another pink line…immediatley.

Oh my god.

Was this really happening??!

J “mummy is pregnant!! You are going to be a big brother!!” as we both cried happy tears, J exclaimed how happy he was!

“C…I’m pregnant!!!!” through happy tears.

Wowwww. We three were ecstatic.

But now what?

I knew mum and dad would be happy but worried, I phoned my big sister L and she knew I think before I had even said anything.

So…pregnant and NMO…what would this entail?

The Walton Centre Liverpool have been excellent (as usual) and the agreement FOR ME is to stay on azathioprine (immune suppresent) and predisonolone (steroids) both safe in pregnancy and a preventative for any relapses after birth.

So far…so good…

I guess I should say….happy new year!

Here we are…the start of a new decade…and I seem to have found Instagram filters…

So the last 10 years…well a lot has changed… A LOT.

I have had countless different hairstyles, colours, lengths.

I have been several different clothes sizes, changed jobs and careers.

Completed a degree and graduated not knowing I was pregnant! With J!

Made new years resoloutions kept and gave some up lol

Bought a house with my newly then husband C who I am still 10 years on very happily married too.

Soo what else?!

Oh yeah that…I got diagnosed with NMO and what fun that has been!

I say fun….more of a bare foot run through a forest of thistles and nettles.

I couldn’t help but wonder at times if I was doing the right thing blogging?

Who would want to read about a 30 something bird writing about her feelings and thoughts about having NMO? And where the bloody hell does one even begin to put into words what it is or how it impacts on life?

Also how do I keep on writing something where I feel I have written everything that I can??

Then I took a step back…a big step back and spoke to C. I talked through some of thoughts and where I can keep my readers interested I guess…as always he hit the nail on the head.

Since said nail has been hit I may have something else rattling…

Is it time to share a bit more..

So cheers to you NMO 2020 lets ‘ave ya

Can you believe this title has been say in my drafts since 2017?!! 2 years ago!!

So why use this now?

A few reasons really.

I have also just added the end part of the title!

I am not stuck with the man in the mirror perhaps back then yes? Who was this person and what had they done with ME?

NMO is never going to be straight forward physically and mentally.

But what I wanted to talk about was self image….self esteem…and perception.

Today I had my hair done!! I went from this…

 

To this!!

Who did this you may ask?

Tada…

https://www.lilkshair.com

Lil K’s!

K I have seen a few times over the years and I always get compliments and in turn that is a compliment to him and his work!!

Extensions-do your research folks!! K is very experienced! Years of ecperience! You can find him on Facebook and Instagram!

So whilst I was sat there today I was talking about chronic illness’ and how image can be extremley important, and how the medication has affected my hair and others on the same thing or similar.

Yes folks my hair is bleached and I am fully aware of this being torture for hair!

However even though I have had darker colours, cuts, trims, traetments,  it has never been the same as it was pre NMO.

Having extensions in which K quite accuratley said was “do you feel more like you again?” “yes” I replied, that’s exactly it!

So why is image so important in chronic illness? Or should I say to me?

I think it’s because…well…I like fashion but not following the crowd, I am comfortable in my skin (oh the irony!!)

Hair? why hair?

I used to say that hair was my “thing” which kinda is yes and growing up I always knew how I wanted it too look.

I never want to “look ill” why? because like I have said soooo many times before I am still me!!

I like to challenge “the stereotype” I am tall, plus size and blonde.

Oh and I have NMO.

This does not mean I am a “dumb blonde” with “low self esteem”

Honey- I have got enough self esteem and confidence for us all-believe me. Lol.

So believe in yourself, and BE yourself.

So other than new hair and feeling 10000% better about it!

What else has been happening?

Haha well…quite a bit…

Work has been busy…J is growing before our eyes!! He is doing so well and we are so very proud of him!

C has been amazing as always…

And…

One other thing…

It is a “pink one” by the way…not a “blue one!”

 

 

 

“Soo something funny happened on holiday, you will probably find this sounds ridiculous, but…we went to the beach…the tide was out like really far out…so  far you could barely see the sea. Anyway, J and I had walked down the beach…a fair way to walk…and we got quicker and quicker…then J started to run…shouting me to join him…Something kicked in..parent instinct or something? I thought it’s now or never and if I was going to go arse over tit I would have a soft landing. Or backwards…or whatever…so for the first time in 5 YEARS I RAN”

“That’s awesome mate, and sand is not the easiest thing to run on” Violet replied (pseudo name)

“Yeah..I was quite surprised how firm it was, so yeah…5 years”

“Nice one mate and probably not the easiest thing to start on after 5 years”

“Yeah…I did wonder”

I have known Violet for many many years, and she is a keen runner and full credit it to her for what she has achieved and does. I knew she woykdn’t laugh or judge me, and dear readers, I did not go arse over tit.

So what happened?

So I just ran…ran like I didn’t know if I was going to fall over…trip…stab my foot on a stone…or a shell….my arms sought of went up and down….and I laughed!

It felt…odd…kind of nice..like when I started walking after paralysis confidently, feeling my muscles working fully not to big poles for legs and my tummy straining to keep me up right.

It felt…good…I can see how Violet and others find running enjoyable.

So what next??

Well whilst on holiday I had no choice bit to walk, to get around. We were very close to the entertainment etc but as the week went on C and J walked at a normal pace and I pushed myself to keep up, and by the end of the week, I had got quicker and quicker.

So dear readers,

What next?

“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…