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.