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

 

 

Advertisements

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

 

“Hi everybody, welcome to my Youtube channel!”

20181212_102918Wow it’s sunny today

Do I do this now…do I…don’t I…oh sod.

“Hi Youtube and welcome to my Youtube channel: notmuchordinary NMO”.

Oh god, first video made. Uploaded…shared on Facebook….will people watch? Will they subscribe?

Oh god…someone has watched!! Yayyy!!!

You see dear readers, blogs and Youtube have been and are so important to me in my life. Nights where insomnia hits, or I’m not very sleepy, or maybe I just don’t want to watch the tele, or when I have been in hospital, and when my son was a baby and I was doing night feeds, escaping into someone else’s life can be very relaxing.

There is sooooo much out there, from hair dye tutorials, fashion hauls, christmas videos, vlogs, diet videos, the list goes on and on and on.

What I was finding though with NMO there were not many “general” chatty videos. I love blogging and long may it continue, so I thought…why not show the nutter behind this writing. Haha.

So I thought, well, why not take the plunge and get going with it to reach out to others with NMO, their family, friends or those who are curious to what it might be and how it can affect people.

Instead of painting a perfect made up make up face, I decided I would make videos to show the real me, likey blog. Moon face, steroid acne, make up free face in all it’s glory. Aswell as showing days when I do feel better and things that help me.

So, if you fancy hearing the voice and the NMO face behind this blog…why not check me out on Youtube notmuchordinary NMO.

FB_IMG_1545548558404

FB_IMG_1545548562401

My NMO body needs to wrap some christmas presents at some point soon…so…..have a Merry Christmas if we don’t chat before.

 

 

 

 

 

 

 

Suddenly…I see….

What does it feel like when the fog clears?

Odd. Really, really odd.

The last few days, I have had this strange sought of clarity and energy come over me.

Energy-hmm I don’t mean that everything is normal hunky dory and back on track, but like a fog has cleared.

This energy I know all too well, and at this time, dear readers, some of you might know what I mean. This is a crucial time….not to be fooled by.

This energy I am speaking of, can also be reffered to as “predisonolone”-steroids.

 

You see the thing is, I am so lucky I react well to them-but imagine having peaks of feeling like absoloute crap, to overwhelming bursts of wanting to take on the world and his wife.

Do not be fooled.

Yes, I try to do bits and bobs-and I mean bits and bobs e.g putting some washing in the washing machine followed by a good long sit down to some crappy tele.

After the energy has passed can come fatigue, pacing I find ok and boy do I know when I don’t!

 

Insomnia is rife at the moment due to pred, and I find it easier functioning on a few hours sleep, and resting in the day than forcing my eyes shut and trying to switch off to no avail.

As I type now, I have had 5 hours sleep, I have just sat for quite some time drinking tea, and I know my lunch time gabapentin is due as my left toes are tingling-constantly. I have done nothing to trigger this reaction, it is purely due to the leison on my spinal cord.

I have spent the last few days, really contemplating on things. I say things, because I could be here forever listing what those “things” are.

It’s really dawned on me, how poorly I have been feeling and for how long.

So much has happened to me physically, and a few times I have gone to write on here and just not completed a post, or felt inspired.

One I have just looked at I had written :

“converse and insoles”-converse are not that great for your feet-un quote: from my podiatrist.

I have been told that I have hypermobility and that’s why I walk funny, need insoles, knees go back too far when I walk….

So what happens when…you accept this…..be very uncomfortable wearing said insoles in your trainers; experience more pain and just know it’s not right.

What happens when you relapse, have steroids and your knees stop playing silly buggers. That your feet stop rolling in, that YOU CAN walk in converse-comfortably actually with no insoles.

When you stop doing painful physio excercises, and realise you can walk more easily now you are recovering without the need of having to lie down 3 times a day and fling your legs up into the air “to get control and strength”.

 

20181213_115259

So what is the answer?

 

Buy red sequin converse to wear around christmas time of course….

20181214_175705.jpg

 

 

 

You’re having a little picnic?

20181209_104744

 

There must be something about the un godly hours of the morning that make me want to write.

1.09am: and I am wide awake.

So I’ve not really told you have I what actually happened recently? As in last week…the week before…

Well, hold that thought, I need a brew.

That didn’t go to plan, ended up convincing myself to go to sleep and the next moment it’s 7.00am!

So. What happened.

A relapse. A relapse happened.

It’s like ripping off a plaster, done. Said it.

But WHAT HAPPENED?

Pain. Pain happened. Pain is nothing “to be scoffed at”-imagine you have this pain that is so in describable, so deep, all you can think about is how much you are in pain, what it feels like, which pain killer to take. To rest, to keep moving, to sit, to stand, legs up, leg down. Lie down, sit up. Stay still, move around

Can you see a pattern here?

Literally getting to the point where your normal aches and pains do not compare, that this pain is SO STRONG you actually cannot be arsed to do anything.

That suddenly you realise slowly that you become more and more less bothered about looking “nice”, that comfort is paramount and suddenly a lot of happiness in the world seems to dissapear.

I found myself getting tearful, for almost it felt for no reason. That I felt unhappy, depressed I guess all of a sudden. Don’t get me wrong, my mental health with stress and depression has not always been peachy, but the last 4 years I have felt mentally good!-well! I started to google NHS depression and considered counselling and speaking to my G.P about anti depressents (I took 1 tablet 5 years ago!-so this is not “normal” for me).

I started to consider ringing for help to let some of these feelings go, over a space of a week, I never felt so unlike myself.

C and J were a constant support, I just couldn’t put my finger on what was wrong with me.

I started having terrible flash backs of my time in the QMC from 2014 (I must stress this is NOTHING TO DO WITH THEIR AMAZING STAFF AND CARE), I just kept playing over the trauma of it all, lying in bed on a catheter not being able to move, the same conversations with doctors like a stuck record going round and round in my head.

I started to accept that maybe I had had a good run, and I was to be stuck like this. In terrible bursitis pain in my hips, struggling to walk accross the playground with J,hair scragged up, hoody on, trying not to use a stick but eventually giving in to that. Pharyngitis perhaps causing a pseudo relapse, feeling really cold.

That hypermobility really was causing all this, pushing myself to do physio excercises (several of 3 times a day) to strengthen weak muscles in my hips, knees, back, feet, stretching out tight thigh and calf muscles. Anything I could do to help myself I was.

Out when Converse, in came Nike and insoles with arch supports.

Waking up in the morning and having almost cramp down both legs-my toes springing backwards with force weather I wanted them to or not. Legs springing out and stretching

Wobbling to our ensuite wondering if I would make it to the loo without falling.

Click-shit-down-knees buckled-again.

Ffs.

“I think I ought to go and get checked out”-what a waste of time. Two local hospitals later, some blood tests, and a box of codeine and plenty of tears “it’s just muscular”-yeah see your G.P they can refer you, and yeah speak to your neuro when you see him.

Great. Thanks. I was convinced I was not attacking, and a check up with neuro he also agreed. So off I went to costa with my dad at QMC, feeling relieved (which helped).

So…the box of codeine being prescribed locally at a hospital was a week after that.

When I saw my neuro, I was mobilising with a stick, I could stand on tip toes and had started oddly to feel a bit better.

The box of codeine situation….1 week later…I could barely transfer from my car as a passenger to a wheel chair.

The soreness of nerve pain all over my legs if they touched anything too my breath away.

That weekend, I had started to have banding, that is like a tight squeeze around your chest and ribs. I suddenly realised my right foot was dropping, my toes were going, and I couldn’t lift my right foot.

“help!”-Dr.C acted fast. He listened and reffered me immediatley to the QMC and got hold if Dr.G and his team.

This sense of relief was amazing as well as being scared.

“mummy might not be here after school sweetheart, I need to go to hospital to get some special medicine to make me better, and have a sleepover there”. “ok!” I might have a special photograph of my spine too like an X-ray but called an MRI-bring me your body book and I will show you which part of mummy is poorly”.

J found this quite interesting being 6 and how mummy would have her medicine and would I need my p.js.

J went happily off to school then the call came, I was going in. C had acted fast getting a wheelchair the night before, have I mentioned how amazing he is?

By this point the pain was so bad and weakness was setting in, my mum came who was also amazing and calmly we set off, a big bag of stuff to last at least a couple of days. I knew I needed I.V steroids and that was fine.

We parked-miracle.

Chris heaved me along in the wheelchair I felt like a dead weight.

In. Bloods. Food.

Dr. A came, “yep this is a relapse we thought it probably was when we spoke on the phone”-toes curling back-classic sign.

The sense of calmness was amazing.

“ooh you’re having a little picnic are ya? hi”- “Hi Dr.G”- the big smile beaming back from him.

“right, I.V 3-5 days of pred then oral”  yep relapse.We need to treat you.

Good. good.

“Toodle ooo” and off he want calm as anything with his trolley of stuff.

Ok, next minute I.V was in, bladder still working, all calm to be admitted. That was that really.

The next morning I woke up n realised my toes had come back, 5 days later of I.V I was mobilising with support and some normal movements were coming back.

1 MRI later…the next day….showed a big fluid leison on my spinal cord which was the NMO relapse causing all the weakness and ridiculous pain.

I realised I also felt….like…Jane….I was no longer depressed, in agony, I felt….light……

That night (5th night in) I got transffered to a ward from MAU type ward.

I was lucky-own room, shower next too it n loo opposite. Peace n quiet.

“I want to go home discharge was written for Sunday”-errrmmm. More neurological input needed-right ok….and physio said they would see me too-hmm. I won’t go into that now but I was not impressed with being offered a zimmer when I could walk with a stick more comfortably.

“ok yes you can go home”-oh thank god.

Miles away from home and I had been so lucky with one of my best friends visiting, mum dad chris and J too, friends, countless messages and phone calls, facebook comments.

“Tada!”- “Mum!” I cried and cried.

Sat crossed legged on the hospital bed, I don’t know how I didn’t pull her over on top of me.  I am 6ft and she is 5 ft 3.

Now I can’t see to type because my eyes keep filling up!

And off we went, nurse in tow pushing the hospital wheelchair.

Down a lot of corridors, outside. “huhhhhhhh”-fresh air and christmas lights in the darkness.

Snap. Off came the hospital wrist band, and out came a few tears of relief.

Back to mum n dads I went, Chris on the phone.

“I am out”-“Yayyy excellent”-I am going home to mum n dads” “fantastic see you later, love you” “love you too”.

Home.

I frantically text my sister “I am out going to mum n dads”-“fantastic!!!”. “Can’t wait to see you at christmas!”.

Christmas had been mentioned that I might not had been out for-well-that was never going to happen was it?.

Cup of tea, feet up.

Mum, dad, Chris and James

Home.