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….

Fooooddddd

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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..

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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…

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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”

 

 

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Hopping, and Pink hair….

Hair!

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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!

fb_img_1548347347075so…

“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.

Why?

Because I only write when I feel inspired too.

 

Today, something happened that inspired me.

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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…

 

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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…

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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…

Make your own kind of music!

What goes around comes around..

A leopard never changes it’s spots…

Karma is a bitch…or..is it…

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These are the musings of a blogger…

Things that strike me in everyday life

Apart from REALLY wanting to dye my hair bright pink and lilac haha but patience is a virtue, and my extensions are being refitted in 2 days whooppp so I plan to discuss the hair then.

Anyhoo.

No one knows what triggers NMO or causes it apart from antibodies but stress I think was a big part of mine.

Working for the wrong people, the wrong type of people (not now!!!) pre 2016 when I had a HUGE change in job which would later become more than a job, but 2014 and prior, what I thought was my career.

What I had studied for, slogged my guts out over physically and mentally.

Just recently, I bumped into an old boss with J, who I have not seen for 5 1/2 years. Stick in tow, they asked “how are you?” and what did I reply “yeah not to bad thanks-erm yeah”- lie!

Why lie?

Because (I know don’t start a sentence with the word because Jane but it’s my blog..so..so there and I am talking as a friend) because how the hell do I tell someone who made my life a misery that I have been seriously ill, paralysed twice, 1 time completley.

They made my life but not just her, and others a misery, but I always wanted to be friends.

Why?

Fuck knows.

You know that scence in Cold Feet when David says “no Karen, no more”-that was like that when it all came to an end.

I told you this was like therapy didn’t I?

So what happened then?

I moved on, worked elsewhere and was happy for a number of years before NMO hit, I would NEVER EVER go back into that industry.

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I am so happy with my life now-yes NMO I could without, but in a weird way, it has made me who I am to some extent.

It’s toughened me up, and made me look at life differently.

I don’t have time for stress, worry, drama.

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Ahh Marilyn, I blame you by the way for me frying my hair with bleach (hence not being bleach blonde and sporting extensions folks!)

I think inner peace is nothing to be scoffed at. It doesn’t matter what size you are, what job you do, how much you earn, what car you drive, how many mates you have, what latest gadget you have.

It’s finding that thing DEEP inside of you that at some point you realise how happy you are. How lucky you are.

I couldn’t help but wonder, was I always at peace with myself but I was struggling to be someone else’s idea of what I should be?

Has NMO taken that fog away?

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Is this why I know who I am now? What I want in life? What makes me tick?

My sister and brother in law bought me this as part of my christmas presents-“no drama lama” as I don’t do drama! Very unecessary, unless it’s the type of drama when I am acting or watching a show!

Yeah sure, a few things I will be changing-my hair for one. Why? It’s my hair…and I like to change it up every once on a while.

A decision I make for myself, by myself that is not controlled by a prescription or medication..

The title of this blog is inspired by a very well known song which “spoke to me”, I have found my happy, I am happy with me. Make your own kind of music…style your own life, be yourself, be true to yourself.

Will you find yours? Or have you already?

 

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I endeveour to stay true to myself and yes NMO is part of me, just a part of me, like a sense lf humour is part of me.

It doesn’t mean I am l am NMO it’s just taught me a few things…

Until next time..

I am just going to spend a penny…again….

“Mummy is just going to have a wee…again, I will be 1 second J”

“1!” “ok, maybe..a bit longer!”

“Mummy is just getting a drink, 2 seconds!” “1,2” “ok J maybe more like 2 minutes” “ok !”

“Right!-paw patrol”-sorted.

Weeing…the toilet…we meet again….thirst…..here we go.

I swear my body has turned into some sort of canal, a tidal wave, and I will become a giant prune.

Right! I am weighing myself.

4 1bs lost in 2 days?!

It’s all that bloody weeing, my stomach and kidneys have gone mental!

More water…glug glug.

Huh.

My face doesn’t hurt when I smile…or actually…my cheeks don’t hurt…

Hmmm is this the steroid taper….tapering to 20mg tomorrow…

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Hmmm moon face not looking so….moony….

Oh god I need a wee again.

2 secs.

The thing with baldder urgency is it can be a case of needing to go…but like NOW not “can you wait a minute?” no actually I can’t…and with me at the moment it’s not like a little bit…it’s like a full on tsunami.

Jokes aside-it’s not much fun when you’re out, you’ve been for a wee before you left and now you need to go…but where is the nearest loo…?!

I do carry a toilet card explaining (should I need too)- pleased to say I have never had an issue-is this because I am female? I could be pregnant or on my period? Is this why I am never questioned?

 

Radar keys are awesome too-do get one should you need to (I need a new 1 as mine has gone walkies-again!!)- cafe’s/pubs often will have one for their disabled loo, but having your own makes life a lot easier! Ebay, disability websites and even Argos sell them! Not expensive at all. Great if you don’t fancy queuing for a key or caught out at the sea side or even in a park!

Bowels can also be fun, this seems only an issue depending on medication at the time e.g iron tablets-the joy of constipation followed by diorehhea (not always).

The other thing is, when I was on steroids before, as you can read about in older blog posts, I chunked weight on with pred as I was on such a high dose for sooooo long. Water retention, severe lack of mobility and excercise, medication, increased appetite, that this time round I panicked this would happen again.

Hmm appears I was good at avoiding photo’s when I was a 24-26 before…just spent a few mins trying to find one to insert here…

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But this is pretty much how I have been feeling!

So I ended up buying clothes in bigger sizes and pleased to say sold these once again on facebook and ebay-marvellous.

I sometimes see a “bigger” me than I actually am looking back at me in the mirror, I only believe I am not this size when I try smaller clothes on that fit and or end up returning a fair bit of stuff I have ordered online that is too big.

Feet…me and my feet….I am fitting more into an 8.5 UK size more recently which is nice as sometimes I can get an 8.5 in the sale in converse when a 9 has sold out….which is good….my bank balance won’t thank me if they shrink a bit more so I fit irregular choice shoes more easily however…haha.

So sometimes….our bodies can change with weight, with water retention, with temperature, with medication…

For me…I am just gonna spend a penny…again….

Neuromyelitis optica.

What a mouthful?!

 

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What does NMO look like?

 

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This?

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Maybe….this?

 

or this?

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Maybe…20181222_091524.jpg

 

Or…

 

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How about…

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Or even…

 

 

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How about…

 

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No?

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Still unsure?

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Maybe…this?

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Well…

How can you put a picture on an illness?

How can anyone think that an illness should look a certain way?

Or a person should look a certain way when living with a chronic illness?

Photo’s are great aren’t they? They allow us to take a snapshot of our lives, for us to keep, share with others or even on social media.

So who are we to judge if someone is having a “good day” and wants to make an effort with their outfit? Hair? Make up? Or get dressed up to go out with friends for a meal or a drink?

That doesn’t always mean they have been glammed up all day, I for one spend many a day in comfy loose clothes or dresses, but if I am well enough to go out for a couple of hours, I might choose just to make that extra bit of effort.

The pictures show different parts of my life, a lot are very recent (2018), the red dress was hmmm 2017 early 2018 I think….

So, it’s not always doom and gloom, my meds bag is covered in lemons because “when life hands you lemons”….I have lost count how many tablets I take at the moment, but….

That’s life,

Keep smiling folks, I know I will be.

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Veganuary..UPDATED

Have I just gone completley mad?

 

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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.

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Hahaaaa.

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 being..to 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.

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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….

 

OH DEAR…NOW FOR THE UPDATE

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…