Limbo

All rests upon the consultant in 15 days.

I am sick, I am exhausted, I am in pain, the painkillers I have are causing side effects.

My partner is with me, staying by my side and caring for me.

I need to get out of this limbo and move forwards.

And I will.

But for now we wait on the consultant.

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