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…

20190103_222136

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…

20181223_124151

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….

Advertisements

Neuromyelitis optica.

What a mouthful?!

 

FB_IMG_1546468810064

What does NMO look like?

 

20181228_142648

This?

FB_IMG_1545520298695

 

Maybe….this?

 

or this?

20181228_221635

Maybe…20181222_091524.jpg

 

Or…

 

20190102_225342.jpg

How about…

20190102_225358

Or even…

 

 

20181229_104011

How about…

 

20181129_105721

No?

20190103_08245720190103_082517

Still unsure?

20190103_082552

 

20190103_082809

Maybe…this?

20180316_182049

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.

FB_IMG_1546203397266

Veganuary..UPDATED

Have I just gone completley mad?

 

20181228_221635

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.

FB_IMG_1546158879177

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.

FB_IMG_1545573220674

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…

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,

but…

my body was not good.

20181111_102054

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.

20181118_130417

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.

Why?

I didn’t want to give in.

 

Never give in.

 

Never give up.

 

Never stop fighting.

FB_IMG_1545945582916

 

 

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.

FB_IMG_1545578093385

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.

FB_IMG_1545578112084

 

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…

20181207_213719

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

20181213_115304

Or….like this…20181225_205257

#bloglife.

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.

20181112_164055

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…

 

20181226_113736.jpg

“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

 

20181225_102833

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…

But….

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…

So.

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.

Why?

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.

Why?

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.

20181221_142901

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…

20181221_142843

 

Well.

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.

20181222_154013