Tag Archives: Christmas

Growing Old Disgracefully

I met with my fabulous MS nurse last week for my six month review.

I recounted my most recent symptoms (I keep a log book, MS brain).

After I’d read out the last one, we both looked at each other and said, ‘Hmm, age, or MS?’

It’s true – it’s becoming far trickier to work out which is which. Balance, fatigue, brain, all of it. I mean, I’m not ancient (cough, 45), but life does have a funny way of creeping up on you when you least expect it.

At Christmas, The Teenager mentioned he’d be twenty years old in August and it took me aback. Seriously? I quickly worked out the dates, and he was right of course. I just never figured my son would be … 20. Just as I never expected to say I had been diagnosed with MS for seven years. A bit surreal.

Not only that, as we’ve debated, what on earth will I call him? The Twenty-ger?

In some ways, I now think I’m ‘settling’ in to MS. It is what it is, if this it what it is. And whether it’s age or various busted neuro-pathways, it’s all the same – some sort of loss.

What I should be concentrating on is what I can do, not what I struggle with. So, I’m trying to come up with a list of things that encompass a more positive approach:

  • I’ve had an epic cold since November that only now shows vague signs of finally leaving. Rather than lament my neglected writing, I’ve been reading books to prove I’m still, just, studying.
  • Downside to that is I’m totally mired in Victorian times, but it’s quite comforting, all the carriages and fainting spells, horrid asylum episodes to one side.
  • I’ve sorted through my wardrobe, passing on clothes, buying some others in the Christmas sales.
  • I’ve dusted off the Nutri-Blast.
  • I’ve analysed the two new wrinkles that appeared overnight on the 2nd of January, initially dismissing them as ‘pillow-face’ creases. Nope, they’re here to stay Two days of anguish followed by, oh well.
  • Should I get a shopping trolley?
  • I’m four and three-quarters years away from a Saga holiday.
  • My lovely friend, who is 57, has found love on a dating site. Hope?
  • Our house is incredibly sorted, as I look for any excuse rather than study. Even my cutlery drawer is gleaming.
  • The little cutting I took all the way in the car from Geneva in March is thriving.

So all in all, a good result for January. The Teenager (I can still call him that for a while) is gaining confidence after a blip, I’m getting better, the cat is recovering from The Teenager’s procession of friends over Christmas and all is well.

What could possibly go wrong?

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Sketching Out The Details

ahaLife is so hazy at the moment, everything put on hold until I hear from the DWP and their assassinsĀ assessors.

It’s a weird feeling; a bit like an MS relapse, when nothing is real and everything hurts.

PIP has taken over my life, as has peering into tiny details I normally prefer to gloss over. Yep, sounds just like a relapse, a DWP-sanctioned relapse?

Anyway, life continues for now; work, home, rest, sleep, work, home, rest, sleep. It doesn’t usually leave much room for any form of excitement. Until today, Christmas Day.

I woke up around 13 minutes before The Teenager, at 6.45, made a cup of coffee and looked around my house, as if for the last time.

I do this every day since the PIP forms, but today had a special poignancy. I’d ordered a home-cooked Christmas Lunch for Two, bought a big box of crackers and had dug out decorations and strings of fairy lights. It wasn’t the advert-perfect Christmas, but it worked. I think.

In amongst a wonderful day spent with family and friends, I received really thoughtful gifts which almost made me believe there could be a future beyond the DWP’s decision:

Beauty: this is always amazing as I normally feel so fat ‘n’ frumpy, having packed on the weight since Grave’s. My mum, brother and younger sister all gave me gorgeous gifts. I just have to embrace my size …

Practical: The Teenager gave me an Amazon voucher to buy books with. Perfect gift, my Wish List is long. My friend gave me an Amazon Echo, to train it to remind me to take my meds (he knows what it’s like when I don’t) and get up to speed with the news.

Inspirational: I was given two beautiful sketch pads and a pack of pencils. Yep, I’ve joined a Drawing Class in January.

I have no idea why, a totally impulse decision. I haven’t drawn anything since A Level Art; I think it’s a case of the orchestra playing on when the Titanic’s going down?

I want to believe there is still a normal life after this. Probably smaller, narrower and more careful than before, but still, some kind of life?

In the meantime, we are teaching Alexa the Amazon Echo to miaow and answer utterly random questions. She’s unfailingly polite; I asked her what she thought of the DWP and she said, ‘I don’t have an opinion on that.

Unlike me …

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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 thatĀ – 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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You Can’t Argue With MS

play-doh brainAlong with sprouts, bad telly and a chocolate overdose, Christmas just wouldn’t be Christmas without a few arguments.

I now know I will never win another one as long as MS insists on using my brain as Play-doh.

I used to be quite good at thinking on my feet, remembering the punchlines to jokes and telling anecdotes without losing the thread halfway through. I could also hold my own pretty well in an argument or disagreement.

Those days have passed and I now sit with a slightly perplexed look on my face as I work out my response to a point made ten minutes earlier. In the spirit of fairness, I reckon us peeps with MS should be given a few allowances when it comes to arguing:

  • We should be given prior notice, giving us time to think of some clever and witty retorts.
  • We should be allowed to take notes during the aforementioned argument. A personal scribe should be allotted if, like me, your handwriting is now worse than your neurologist’s.
  • We should be granted ‘argument breaks’, allowing us time to gather our thoughts (and energy). Lucozade should be supplied as standard.
  • Similarly, a sofa should be made available if we start yawning, and the argument rescheduled for a more convenient time.

I’m resigning myself to the fact that I am now a pushover when it comes to arguing, although when The Teenager starts one (all too frequently over this festive season), I end up falling back on that age-old parent phrase – ‘because I said so’. Which isn’t very original, but you can’t argue with that one. This is normally followed by The Teenager storming upstairs and blasting out his music.

To be honest, I don’t really miss point-scoring and the hollow victory of winning every argument. My initial frustration has given way to calm acceptance and I have now added it to my list of things I have lost, along with heels and staying up past my bedtime.

So the next time an argument brews, I will stumble inelegantly away or just stay put and use one of The Teenager’s favourite phrases, ‘talk to the hand’..

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MS Doesn’t Take A Holiday….

MS grinchWell, the big day has come and gone.

Shame I can’t say the same about MS, which had the bad grace to leave a few extra presents under the tree.

It started so well. We had our company Christmas bash – just me and the boss marooned in a restaurant full of proper office parties (all excruciatingly forced jollity, loud voices and a solitary woman crying in the loos).

We had a glass of wine at my place afterwards, where I amused the boss by holding up the plastic wineglasses my mum bought me for Hallowe’en after I smashed my last one. ‘Spooky ghost or howling skull?’. Awkward.

The next day I had champagne with the family while The Teenager was in London. I took it easy, inwardly congratulating myself but MS had other ideas. The last thing I remember is getting home, feeding the cat, tripping over, hitting my head on the door and knocking myself out. I woke up several hours later with the cat next to me shaking her head sadly.

Then my arms started to go numb at inopportune moments. Normally it’s one or the other, along with constantly buzzing legs and feet. So with two numb arms and dodgy legs, Christmas Day was a trial. We helped to serve Christmas lunch to a roomful of pensioners. Someone thrust a jug of gravy into my hands and motioned for me to go forth and pour. Gripping the jug as tightly as I could, I made my way round.

I did try to explain that gravy washes out of clothes quite easily, just pop a bit of Vanish on first, but they were unimpressed and a good few elderly ladies glared at me as they dabbed ineffectually at their skirts and blouses.

So now we are in that odd period between Christmas and New Year. Numb arms or not, I have still managed to polish off a tub of Quality Street (the pain was worth it). I fall asleep at odd times of the day, I’ve tripped over a stray bauble and am considering installing grab rails in the shower (you really, really don’t want to hear that story).

MS has certainly made Christmas that little bit more interesting. Laugh? Til I cried….

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