Category Archives: Emotions

Stuff The Turkey …

grinchChristmas is most definitely on hold for now.

These Personal Independent Payment (PIP) forms are the ever present Grinch, creeping around my house sucking the very life out of everything that is positive and festive.

However, you guys are angels in disguise – thanks to all your incredible advice, I have now come up with a plan:

I ‘borrowed’ a pad of A3 paper from The Boss and I’ve got one sheet per question. First, I wrote down every MS symptom I experience, relating to each question, then went back over it and jotted down every single example of difficulty I could think of, relating to each symptom, for each question. It’s mind-bendingly complex and it’s taken me hours and hours. Whole days, interspersed with sleep and despair.

Finally (and I haven’t managed it yet), I will take each question in turn and write out a full answer using all my bullet points. After that, I will find a kindly peep (hello, Boss!) who will transfer my scribbled, unintelligible answers on to the form.

I met up with a friend last week who simplified the whole process by saying, ‘imagine a friend, who’s the same age as you. What can she do that you can’t?’ Well, that floored me. As I left, he also said, ‘no one should go through this process alone’ and it was all I could do not to dissolve into tears there and then.

He pointed out just how important it is that – especially as MS can fluctuate for some of us – the words from the DWP to keep in mind are that you will be assessed on what you can do;

  • safely
  • reliably
  • repeatedly
  • to an acceptable standard
  • in a reasonable time period

So as your symptoms fluctuate, so does the time/pain/stress it takes you to complete certain daily tasks. Perhaps one day you just about get by with a lot of give and take and the next day you’re on the sofa. Like me.

You’ll find you repeat yourself over and over in each question and that’s ok. Your MS has given you a set of symptoms and they give you a set of problems and very often these are the same symptoms and the same problems.

What these forms don’t prepare you for is the absolute horror of trawling through the years, realising how much you have ‘adapted’ to MS and incorporated it into your life. Because you have to. When I think about it – and the friend I can compare myself to – it’s just not normal to fall asleep in work, be too tired to cook six days out of seven, to not leave the house unless I’m with someone.

I am living a twilight existence and thanks to the PIP forms, this has been exposed in all it’s grotesque glory.

The Grinch has stolen Christmas and replaced it with Hallowe’en.

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A Right Barrel Of Laughs

barrelThe DWP (Department of Work and Pensions), in reassessing whether or not I still have MS, is like a huge, malevolent vacuum cleaner.

It’s sucking the absolute joy out of everything.

I go to work under a cloud, come back under a cloud. I’m miserable, fed up and terrified about the future.

The depression rate for people with MS is three times higher than the national average. Throw in a Dickensian and brutal reassessment and I’m in no doubt it’s even higher.

I feel as if I’m teetering on a very high tightrope (note to DWP: no, I don’t do this in real life), and I can either use every bit of my self-will and inner strength to stay on that rope or simply free-fall into the abyss.

I’m trying hard to reintroduce some sense of normality into my life, plus a dash of humour. It’s incredibly difficult, especially as, freed from the routine of having a Teenager at home, I’m now able to give into the heightened fatigue, nerve pain and spasms. So I go to bed early as the darkness only makes me feel worse.

With all this in mind and the season of Goodwill to All fast approaching (haha), I’ve started a little list, where I jot down the happier and funnier side to my life at the moment.

Top of the list is of course, The Teenager. He really has taken to Uni like a duck to water and we text-chat every other day. The pride I feel in him and his achievements will never be dented by the DWP, no matter how much they try. He’s 100% ring-fenced.

Here’s my list this week:

  • When The Boss picks me up for work, he makes sure there’s a cup of coffee ready in the van. Bless him. No donuts though.
  • I went to my evening class this week, after calling in sick for the last one. Result.
  • The cat brought home a (dead) rat the other day. I’m not quite sure where the humour is in this, but I was brave enough to schlep it in to a bag and dispose of properly.
  • Speaking of the cat, I had to get her to the vets again for her Flea Bite Allergy (a real thing!). Despite the steroid injection curing her extremely quickly and giving her bags of energy, I was nevertheless disappointed to see that she didn’t have the side effect I usually have from steroids, i.e. cleaning the house.
  • The joy of discovering my next Book Club book is very short.
  • I laughed until I cried at ‘Motherland’ on the BBC. Genius.
  • Sitting in the works van a lot, I’ve managed to get through a very long book, ordered Christmas lunch for me and The Teenager and browsed Pinterest for decoration ideas I’ll probably not get round to doing, but the intention is there.

So life is a precarious balancing act right now. Pleasure is fleeting, fear is endless.

But I will keep writing my list, until I can’t. And then I’ll know I’m in trouble.

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Out Of Date(s)?

cheeseI discovered an old block of Parmesan in my fridge the other day.

It was well past it’s sell-by date and had been sadly neglected and forgotten about, but I sliced the edges off, grated it and it was just fine. Perfect.

As I was sprinkling it over my pasta, I realised, I am this Parmesan.

Before you think I truly am suffering from an extreme case of Empty Nest Syndrome now The Teenager is at University and my only companion at home is my cat (and my plants), bear with …

Back in 2012, soon after my diagnosis of MS, I lost:

  • My partner (he scarpered, sharpish)
  • My job (bullied, then forced out)
  • My health (left the building)
  • My envisaged future (dashed)
  • Hope (lol)

Now in 2017, I have:

  • A brilliant job
  • Despite MS, decent health and access to treatment
  • A brighter future (I think)
  • A whole lot of hope

Excellent. But this is where the Parmesan comes in. I am still partner-less; I am that forgotten-about block of cheese in the back of the fridge. Whilst the milk and sweet chilli sauce may have regular outings, I never go anywhere.

And, sticking with my very dodgy analogy, with a bit of sprucing up, maybe I should rediscover myself and find the True Me lurking just beneath the surface. Sure, I may be a bit battered and bruised from experiences over the last five years, but with a bit of help, who knows?

Part of me hasn’t looked for a partner, focusing instead on the more pressing matters of giving The Teenager as normal a life as possible, winning a workplace discrimination case and sorting out MS treatment. It didn’t leave much room for anyone else. Plus, I was in the middle of an MS Pity-Party For One, which wasn’t pretty.

Well, now The Teenager is having a ball at Uni (latest text, ‘Being an adult is weird, but am getting used to it‘), my job is sorted and I’m facing the future filled with hope, a teeny-tiny bit of space is being carved out.

Then the Fear Factor kicks in. I simply can’t date because:

  • The cat wouldn’t like it
  • I don’t own any ‘dating clothes’ and I can’t wear heels
  • Ditto dresses. Outside of my job (building-site clothes), I wear jeans
  • When do you bring up MS?
  • The last time I dated, the iPod hadn’t been invented
  • I could suddenly get foot-drop and splatter myself across the floor

So you can see the dilemma I’m in. It would be kind of nice to have a partner-in-crime; someone who didn’t mind the jeans, the cat … the MS. Then again, it would be nice to wear heels again, but that isn’t going to happen any time soon.

I often wonder if I am subconsciously preparing myself for eternal singledom. I cut out holiday adverts from companies with names like, ‘Only The One’ and ‘Just You’ (no single supplement, no pressure). I am taking an unhealthy interest in talking to my plants. I automatically divide recipe ingredients by four.

As we approach the season of unbridled smugness, i.e. Christmas With a Loved One, spare a thought for little old me, pruning my Poinsettia and signing Christmas cards from me and – you guessed it – the cat.

Sad, much?

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Denying the Anger of Bargaining with Depression and Acceptance?

griefI don’t know about you, but the so-called ‘5 stages of grief’ annoy me.

It’s too neat, too … sanitised and packaged.

MS is anything but.

So, you get your diagnosis (of this life-altering, incurable illness) and then you seamlessly glide from the Neurology Consultant’s office onto this Grief (for your old, pre-MS life) Conveyor Belt, at the end of which you happily reach Acceptance and proceed to remain a valuable member of society? And you have the leaflets to prove it.

Yeah, ok.

This concept was devised by Elisabeth Kubler-Ross in 1969, primarily in dealing with terminally ill people, but has since permeated everything from illness to divorce to coping with not having your smartphone to hand for 24 hours while it’s being repaired.

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

In the right hands, it can be a useful tool, especially if you make clear that we can go through the stages in any direction, not necessarily in this order and we can boomerang between all of them for years. In the wrong hands, it can be yet another pressure to conform to what is deemed ‘normal’. You’ve got MS? Go through this and you’ll accept it. You’ve not accepted it? What’s wrong with you?

In my own case, I never once denied I could have MS. In fact, with a family history of it, it was my first thought when my body failed spectacularly, despite the initial diagnosis of a stroke. Anger? Self-pity, yes. In buckets. I’d like to add this to the ‘stages’.

Bargaining? Never entered my mind. I’m confused to what it actually means. If I do this, I get that result?

Depression is almost a given for any life-changing illness, so I think that goes without saying.

Acceptance? It comes and goes, probably in tandem for each relapse. Just as I think I’ve adjusted to MS, it throws a curveball.

There is no magical formula to coming to terms with MS. I wish there was. Just as MS is unique to us all, so are the ways we cope with it. So, resist that conveyor belt and be true to yourself. If you want to scream and shout, shut yourself away for days eating nothing but ice cream or you fancy painting the town red, do it.

Should you ever reach Acceptance? Have I ever climbed Everest?

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If I Had My Choice, I Would Fire The Scriptwriter

shockedI was is in work the other day and in amongst a conversation about the previous night’s ‘Game of Thrones’ and the price of jacket potatoes, the attention suddenly switched to me.

‘Oi! What’s up with your face? You having a heart attack or something?’ (builder humour).

It was a hot day. My face was burning and bright red, so I yet again explained MS heat intolerance, one of my first and most annoying symptoms, trying to put a jokey slant to it.

‘Oh yeah, that old MS excuse again. Don’t you ever not talk about MS?’ Now, this may seem brutal, but bear in mind this is a building site, they’re all friends and I can give as good as I get. So I did, and cut him down to size.

A while later, more unsettled than I wanted to let on, I casually asked if it’s true, do I always talk about MS?

‘Um, kind of.’

I found a shady corner, sat and sulked for a long time (admittedly, not very grown up) and brooded. It was bugging me. I always prided myself on putting MS to one side and getting on with the job. Apart from when I can’t, and I stay at home, the beauty of a flexible job. I thought I had a ‘work mask’. I’d calibrated my working day so that I started early, finished early and spent the rest of the day recovering before starting again. To most people, I should appear perfectly fine. 

Finally, it was time to go and I continued sulking in the van. Then I thought about it on a different level. They were perhaps right, but it just showed how much MS dominated my life. I try to keep it in a box, or at least a separate part of myself. I’ve tried to come to terms with the totality of it, but maybe it hadn’t really sunk in.

I ran through work scenarios:

  • Unable to work in the sun – MS heat intolerance.
  • Being tired all the time – MS fatigue.
  • Tripping over at work – MS foot drop.
  • Garbled speech – a hark-back to one of my first symptoms.
  • Brain freeze – MS cog fog.

Yep, it was all about MS. To me though, it’s all normal now. So it’s not so much that I talk about MS all the time, it’s when people ask me why I did this or did that, the answer almost always wends its way back to MS.

Maybe they could focus instead on how much I have moved the company forward, which has nothing to do with MS; my superb organisational skills, my rapport with clients, my eye for detail and my all-round fabulousness?

What do you think?

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