Peter Rabbit....

... Had a fly upon his nose,
Peeeeeeeeeter rabbit had a fly upon his nose,
Peter rabbit had a fly upon his nose,
So he Flipped it
And He flapped it
Until the fly flew away...

FLOPPY EARS AND CURLY WHISKERSSSSSSSSS -

This is what I have been singing, For two hours.

I love my new painkillers

- Cookie

Just when you think you know what is going on...

... The Opthamologist comes back and tells you your MRI's were apparently clear, they recommend a Evoked Potentials Test (already booked) and a follow-up with the Neurologist (already booked) but admit, frankly, they're stumped.

And they go and ask a more experienced colleague, who is also stumped.

"It could still be MS, sometimes it isn't clear from MRI scans... but we're going to have to discharge you, there actually aren't any more tests we can do, its down to Neurology now..."

I can also raise the number of consultants I've made say the following:

"I've never seen that before"

From one, to two!

I have to say, its days like that I am thankful for good friends. I spent an evening sat on the sofa of the Reverend Tez, who after discussing that MS was the immune system attacking the nerves, Logically pointed out that all I needed to do was get rid of my immune system and live in a giant, sterile hamster ball.

As I was near crying with laughter he looked straight at me and said;

"Well it sounded like a good idea in my head, although in reality, hill's could be a problem."

Yes, Because when you're living in an air-tight sterile hamster-ball, gentle inclines are likely to be your biggest concern.

So now I am going back to the hospital, to speak to them about todays flare-up caused by over-doing it.

Toodle Pip!

~ Cookie

Things to look forward to.

MS brings with it so much uncertainty. I thought this morning I would take a moment to look at what I have to be thankful for:

My children. Even though they're not with me, they are well cared for, happy, healthy and I have very regular contact. They can brighten up even the crappiest day, and watching them grow and learn is a pleasure and an honour.

Moving house. I am currently living in a hostel, but hopefully soon will have the good fortune to move to a council house that isn't up a couple of flights of stairs.

My parents and sister; despite rows, stress, worries and whatnot, they are always there for me. When it counts, I know I can count on them. I'm looking forward to spending time with them.

My partner; I am so thankful for him. As I type he is sleeping, I don't want to wake him just yet. He makes me so happy, the most wonderful, beautiful, kind and caring creature I have ever had the fortune to know, let alone call my own.

He leaves today. I'm dreading it. But I am looking forward to the day he can move over here, and when time together won't be punctuated with the sting of goodbyes.

I have a lot to look forward to, to be thankful for. If I were to believe in Karma, then realistically MS is a small price to pay, for what I have that brings happiness and joy.

- Cookie

Don't want to be a fuss....

"But you need him..."

I snivelled quietly and dried my eyes, red and puffy sat on the sofa of my ex-husband, who has become a good friend since we separated.

"I know, but what If I need him more later? I don't want to be a fuss. Besides he has... well... you know, he doesn't like travelling and he was here a couple of weeks ago. I don't want to cause a fight with his mum, she already thinks I ask too much..."

I trail off mumbling. I'm in bits,  thirty minutes earlier I'd been absolutely fine, watching Toy Story 3 on the telly (Such a child at heart) and at the end, I always do, I cried.

Which was a mistake.

I crumbled as I sat there, flood gates finally opened and had sobbed until I couldn't breathe, all the fear, the worry, the loneliness, the size of the diagnosis, everything was just - too big - I couldn't process it.

I'd been needing to cry since I'd gone into hospital, but I rarely break down, and if I do, its sure as hell not in public.

I get a grip and carry on.

"Just tell him you need him here."

I shake my head and mumble a reply.

"What? Didn't catch that."

"I already have."

I knew why he hadn't come over, so many reasons. The primary one being my partner doesn't like conflict, so he had avoided conflict at home with family by staying put. And I didn't have it in me to shout.

At this point my Ex (We shall call him - hmm - Fred will do) was sat on the other sofa staring at me in disbelief.

"And he's not..."

I shook my head. Fred's reaction was just dumbfounded disbelief, he opened his mouth several times but decided against saying anything. He realised there was nothing he could say that hadn't already run through my head.

Because that's what it comes down to. People think I'm too proud, too stubborn to ask for help when I need it.

It's not that.

I don't want to be a fuss.

I'm the sort of person who if I've fallen and needed an x-ray, I apologise to staff for wasting their time when it isn't broken.

At around that point Skype on my laptop bleeped. My good friend Tan was checking in on me. I explained in brief that I'd asked my partner to come over, and he hadn't taken the hint.

A chat flashed up with me, my partner and Tan in it.

[Tan]: Tell him.

After stuttering a few sentences, I did. Everything fell out of my head onto the keyboard, I wrote a huge mass of text of everything that was going through my head, that I was sorry but I wouldn't ask if I could cope  alone. Pleaded with him to visit.

"not sure if I can this weekend, cause its really short notice, which will turn out into a fight with my parents which will make things even worse"

That, was the point I snapped.

I was rude, harsh, unreasonable, hurt, and explained that right now I needed him, and I was sick of being the one having to wait, that if he so completely wanted to be with me, then wasn't I worth fighting for.

I apologised to Tan, shut the machine and went out. Shopping. At an all night supermarket at 1am. Like a normal person does.

About an hour later, a message flashed up.

He'd booked a flight.

He flies in tonight.

I am so grateful, so relieved.

And now feel so guilty.

That I bullied him into it.

I shouldn't have.

I don't like making a fuss.

I have an MRI scan tomorrow.

Am I selfish? All I want is a hug, to hold his hand and for him to 'be there' when I need him most.

I feel, so guilty. For asking for this, for me.

- Cookie.

A quick note on a scientific study...

Studies show that if you don't sleep properly you are more likely to be overweight.

Damn right Sherlock, Its because at 3am Biscuit Sandwiches don't sound ridiculous, They sound like a fucking plan!


- Cookie

Catching a curve ball.

Its funny how life can throw you a curve ball, knocking you off your feet with something you never saw coming.

But once it has you look back, and can see all the little clues, all the hints and suggestions pointing towards it, you wonder how it took you by surprise at all.

I can think of four of these incidents in my life. The relationship breakdown with my eldest's father, the diagnosis of my son with Autism, and the diagnosis of my daughter with aspergers. In each of these once the dust had settled, the shock had subsided and the immediate period of 'coping' has passed, there was opportunity to sit back and reflect.

I'm sure many if not most people reading this have had a similar moment of quiet, accepting resignation, where you take stock and adjust plans to suit. It's never easy, but fighting against such things that cannot be changed doesn't help. Only acceptance allows some form of healing and progress to be made.

If you have never had one of these moments of shock and acceptance, then I am happy for you, and hope with all my heart that you never find out what it is like.

The numerically adept among you will have noted I only listed three of the four. Given the nature of this blog I assume you can make an educated guess as to the fourth.

"I'm worried it's m.s"

My deepest fear voiced quietly as I sat on a hospital bed, my mum beside me, a pillar of calm.

I won't ever forget her face, the pretty young doctor, about six months pregnant with a delicate floral headscarf, smiled sadly at me as she nodded.

"That is what we are thinking, the next round of tests will confirm if it is or not."

I nodded slowly in understanding, and thanked her for her time. The next day is much of a blur.

Gathering my things, being discharged from the hospital. A jumble of conversations with family at my parents, the carefully upbeat phone calls to relations too far to tell face to face and going home, to my small bedsit, and the cold, sickening finality as the wooden fire door closed heavily behind me.

Telling my partner, was nothing short of causterizing pain.

I called him on Skype, sadly we are in different countries, something that will hopefully be rectified soon.

I had to tell him that his partner will never get better, that she will drop further into disability, that the plans we had of a seeing the off beat track, exploring the nature and peace of the countryside, a holiday walking along the coasts of indonesia, so many whispered hopes, may now not be possible. May require a chair, or sticks but not walk far.

He took it well, supportive, and calm. I will never be able to thank him enough for his reaction that day.

I had hoped to run a marathon when I turned thirty, to mark 15 years since my mum completed that race, 15 year old me crossing the line beside her, having walked the course with her after she sprained her knee just six miles in.

A TRUE inspiration that day, that despite pain, and injury, she would carry on, she would cope, and complete.

Mum and I have talked a lot since I became unwell, slowly the clues have become clear, rising into view like shipwrecks pulled from from a murky sea.

Tiredness, more extreme than is usual for a mother of young children. The fact that sometimes I could not be woken, or would surface for mere moments before sleep claimed me again.

Shaking limbs, odd twitches and shudders, intermittent since my teens, but increasing in frequency, regularity and strength.

The x-rays and tests at 16, when pins and needles would coat every inch of my skin for anything between minutes and days.

Stress, they had concluded, or sleeping funny, nothing to worry about.

Then just over a year ago my already poor balance was getting worse.

Eight months ago it manifested as vertigo, where even the slightest movement would result in a stumble, a fall, or sickening nausea.

"take these and if its not better come back in a week"

I didn't go back.

It wasn't better, but it had improved to the point where rolling over in bed no longer resulted in projectile vomiting.
It took 2-3 months for it to clear completely, and in fact it never did, not completely. Moving suddenly made the room spin, and I fell more frequently than ever before.

But that's to be expected isn't it?

When you're tired?

I must admit I wonder what would have happened if I'd gone back to the doctor after a week.

Would I have known sooner?

Would I want to have known sooner?

Not really, in all honesty.

Until it severely affected my life, ignorance was for the best I think.

Now I sit here in my local pub, at two in the afternoon, with a pint of coke, a packet of crisps, and a roaring wood stove warming my tired and aching legs.

Acceptance is coming. Its not here yet, I still cry, worry, panic, mourn the loss of some dreams and stare blankly at the wall.

But I am not fighting the truth.

I am seeking the positives.

And right now a positive, is a drink, a packet of crisps, and a warm fire.

On a November Tuesday afternoon.

- Cookie

Forgive last night...

Forgive last night's self pitying whining.

Got a grip this morning.

ONWARDS!

See? She gets it 

- Cookie

Oh sweet ignorance, where are you now?

Excuse me if I allow the stiff upper lip to drop for a moment.

Reality has smacked me upside the head. Today has been a hard hard day.

I went to visit a good friend of mine, we watched films and chatted, it wasn't until we decided to go to the shop below where he lives I realised how badly I was affected.

One flight of stairs and a 20meter walk each way.

I was shaking, exhausted, wheezing and fit to collapse. The look of unspoken concern from him was crushing.

Because the reality is, that although I've had relapsing remissing, getting better each time. I've never been this bad, or for this long.

And I am terrified that this, is marking the shift to 'Secondary Progressive' where remissions are fewer and further between if at all, and any improvement isn't back to 'normal', gradually getting worse.

Despite sitting in my car resting my head on the wheel after leaving, gathering my composure and weeping softly. I dried my tears and set off.

Driving aimlessly for around an hour and a half I knew I couldnt face going home to be with my thoughts.

So I arrived on the doorstep of another friend, one who has always been a listening ear over the last few years. As I told her what had happened, and being diagnosed the horror and worry on her face mirrored my own that I have been too proud to show.

We talked, discussed everything, looked at the positives, but in my mind all I could see, all I could feel was the settling dread, the reality of what I have and what is happening to me, and the all consuming fear, that this time, it wont go away.

So now I'm home once more, exhausted from climbing one flight of stairs to my flat, tears battling for freedom as I fight them back and force myself to be rational, to be practical.

The reality isn't that I 'may' end up in a chair. I need one now.

The exhaustion is debilitating.

With each person I tell it all becomes more real.

This isn't some awful nightmare I'm going to wake from.

I feel so lost tonight.

So hopeless.

And so very, very angry.

Why? Why has this happened to me? Why after all the trouble of the last few years did life see fit to smack me with this.

I've always believed that life won't hand you more than you're strong enough to cope with.

But I find myself questioning that.

Maybe life is merely pushing me to breaking point, where until you crack everything keeps piling up.

Why is my body failing me.

I should be in my prime.

And I'm falling apart.

Sweet Ignorance, sweet blessed unknowing, thinking I'd get better, I just needed more sleep, just needed to eat better, knowing it would be ok soon.

But its not.

Its never going to be ok.

At twenty seven years, six months and ten days, I am facing not only my own mortality, but that the best years of my health are behind me.


I am so scared.

So angry.

So upset.

So lonely.

I'd give anything for my partner to be here now, but life as a cruel twist has us hundreds of miles apart.

I'd do anything for a hug.

I don't blame him. He can't help the distance any more than I can.

But right now I can't see a light of hope. All that is waiting me is descent into disability.

I can barely walk. I can't stand enough to cook for myself, I can't cope with going shopping, and certainly not carrying it home.

I need a god damned carer.

Twenty seven, well educated, reasonably intelligent, and trapped in a body that is collapsing under me.

It's so unfair.

There was so much I wanted to do, so many hopes, dreams, plans.

And they're slipping through my fingers like sand.

And there is nothing I can do.

Nothing anyone can do.

But accept it.

I am terrified, I wont be able to.


- Cookie.

Why "Toodle Pip"?

Why toodle pip?

Why name my blog with such an archaic throwback from the English language?

After all, this is the twenty-first century, age of Internet, mobile technology and a method of writing so complex that I have to call the person to find out what

 "CN U C NX SUN ABT CR8VE? LME NO 2MOZ, KKTHXBAI"

 is supposed to mean.

"Toodle Pip" is one of those terms that is very rarely used in modern culture.

It, along with the likes of 'Cheerio!' and "Chin-up pickle", herald from around the time of the great wars. A time of 'Stoicism' and 'Getting on with it'.

In fact a time from which the stereotype of 'Britishness' is drawn from.

I was discussing this with one of my best friends, (who I affectionately call "The Good Lady" ).

It is something we are both aware of, and caught ourselves doing, that when the 'Midden hits the fan' we tend to hark back to that secure, safe, stoic Britishness 

An outlook and belief that means that yes, you may go and have a little cry in the bathroom out of sight.

But then you will dry your eyes, stand up straight, and bloody-well get on with it!

I know 'The Good Lady' is having a bad time and in desperate need of a cup of tea and a listening ear when "Cheerio" and an almost forceful 'brightness' enters her tone of voice.

Likewise she understands that when I am worried, 'Toodle Pip' will enter my vocabulary, along with the habit of speaking with the forthright certainty of a 1940's General.

 "Well Sod it then. You know me old Girl, I'll just buckle down and get on with it, Not beaten yet! Toodle Pip!

So essentially this blog is named for the attitude and determination to make the most of the hand that life has dealt me.

It is not pleasant, it is not something I would wish for, but moping in a corner isn't going to help any bugger.

If I were to name it with a modern twist it would likely end up as "F**k it"

In the scheme of things, I prefer 'Toodle Pip'.

- Cookie

The beginnings of Toodle Pip.

First Blog post. Tradition states, I should explain why on earth I'm Blogging at all.

"Blogging: Never before have so many, had so much to say, about so little, to so few."

My name is Cookie, I am 27, and I am about to be diagnosed with MS (Cue legal argument regarding why this may not be entirely accurate but we believe it to be at this time blah blahblahblah)

I've had symptoms for just over a decade now, Which I put down to a variety of other causes, excuses, convinced myself I was making a fuss, imagining it, etc.

Following an attack? relapse? general jumble of symptoms? in the last week or two, I was forced to admit to myself this wasn't just 'over-doing it'. When my eyesight in my right eye went from 'fine' to 'extremely blurred and washed out colour' I went to my opticians, who after checking there was nothing wrong with the eye itself, sent me to the Hospital.

The hospital confirmed there was nothing wrong with the eye itself, and referred me for an MRI within the next month or so. I went home, having had eyedrops that made my pupils dilate to the point where I spent the trip going "wow, everything is so sparkley" (my mum was driving as I wasn't allowed).

Two days later, I woke up, barely able to feel the right side of my body. Shooting pains, pins and needles, numbness, heavy and weak.

I did what any normal adult woman of nearly thirty would do.

Burst into tears and called my mum.

I owe a massive debt of Gratitude to my local NHS Hospital. A & E took me straight in, took a history, contacted MRI to get my scan bumped forwards to the next day, Moved me to an assessment ward, took a battery of blood tests, a CT scan, and passed me through 4 different doctors and two specialists.

 As such the usual route for MS diagnosis, a process known as 'Limboland' to many MS suffers, long process of elimination that normally takes weeks to months of referrals too all the different departments, was completed in around thirty hours.

After all this one of the doctors came and spoke to me before I was discharged. It was explained I would have another MRI scan (including brain, neck and full spinal cord), and an "Evoked Potential" test, which measures signals through nerves with electrodes and SCIENCE.

These two, the doctors are "hoping" will rule out MS. If they don't, it will be confirmed.

My past history, symptoms, and increase in relapses strongly suggest MS, and all the other more common causes have been ruled out. Leaving MS, or the really rare things.

So now I'm home.

In my flat, with my old lady walking stick, and a sense of humour still somehow intact.

So this is how I came to be writing this, this blog will track (hopefully) where I go from here.

Looking forward to finding out.

- Cookie.