Islands in the stream

At the Needles. With pins and needles. Excellent.

:: Islands in the stream by Kenny Rogers and Dolly Parton 

Needles and pins

I've been to London for a couple of days this week with work.

We've launched a new programme aimed at improving the lives of children and young people who live with parents who drink too much.

One of our keynote speakers was the current shadow health secretary Jonathan Ashworth who spoke very movingly from personal experience. (On reflection, I perhaps should have tried to grab him after his speech to raise the profile of MS.)

It was a successful and emotional event. But very, very tiring.

As a result, I have come home with a horribly familiar sensation - pins and needles.

They're in both my hands and - at the present moment - my right foot. They may spread, they may not. Who can say.

In the scheme of MS symptoms, they're at the lesser end of the scale. But they are still rather unpleasant.

And they remind me very much of my first relapse. Which I am finding unsettling.

Funny isn't it? Fifteen years with MS and I think I've mainly come to terms with it. But when I'm tired and emotional - and tingly - the full weight of this disease hits me.

I carried on this week like anyone else - train travel, tube negotiation, hotel booking, dinner with colleagues, important work event - and it was almost like I was a healthy person.

But what's currently needling me is that I'm not.

I thought I'd got used to re-adjusting my expectations, but it only takes one pin to pop the bubble.

:: Needles and pins by The Searchers

Proud

Who doesn't love a bit of silly comedy?

I know I do. And I've been delighted to be able to introduce my daughter to the absolute joy that is Miranda.

My daughter is 10 so a few of the jokes fly right over her head, but at the vast majority she chuckles and chuckles - it's such a lovely sound.

One of the running gags in Miranda (for those of you who haven't seen it) is the singing of Heather Small's hit 'Proud.'

Miranda and her friend Stevie hold aloft a cardboard cutout of Heather's head and bellow out the lyrics: What have you done today to make you feel proud?

And do you know what, among the prat falls, mild innuendo and knowing winks to camera, it's actually a really important question.

When you have MS, there is a huge list of things you can beat yourself up about: I'm letting my children/partner/family/friends down, I can't do what I used to, I have to rely so much on others, I can't work like I used to, I don't feel like I'm contributing, I don't feel worthwhile, I feel like a failure.

Honestly, it's endless. And it's really damaging. Because that list can become so familiar and so entrenched that we are at risk of believing we are nothing but those negative thoughts.

We are all so much more than a collection of can't dos - we are parents who are trying really hard, we are friends who are emotionally supportive, we are workers who are battling to do a good job, we are children who are caring for our parents, we are people who are just trying to live in the best way we can.

And we do this while dealing with a bloody awful disease. That in itself should be enough to make us feel proud.

But if it isn't, if we need more proof, then perhaps we should consider what we have done today that has made us feel proud.

Had a shower? Proud.
Made that phone call? Proud.
Fed your family? Proud.
Been kind? Proud.
Got through a day with MS knowing you'll have to do the same tomorrow? Proud.

So thank you Miranda - for the chuckles, the clumsiness and helping me find the pride.

:: Proud by Heather Small

Shake it out

I'm reasonably competent. At least, most of the time.

I can function fairly well in company, I can generally navigate the supermarket (even if they INSIST on moving the yoghurts every time I visit) and I can sometimes get a couple of the answers on BBC 2's boffin-fest Only Connect and then feel super smug for the rest of the evening.

But I'm not sure if I'm quite as with-it as I was when I passed my degree, or when my brain worked on super-speed as a reporter filing court copy up against deadline, or if I'm even simply as mentally able as I was a year or so ago.

Because a nosedive in cognitive function is just one of the many distressing aspects of life with MS and a lot of people experience frightening and frustrating impacts on learning and memory, attention, concentration and mental speed, problem solving and word finding.

So, pretty much everything it takes to get through the day.

Issues are, like most things MS-ey, generally caused by inflammation and lesions in the brain interrupting the transmission of electrical messages along nerve fibres, reducing the speed and accuracy of the information.

My word-finding and mental speed are noticeably worse when I'm tired, have been concentrating for long stretches of time, if I'm surrounded by a lot of noise or after being particularly physically active. 

They're also a bit rubbish if I'm particularly emotional - so any complex problem solving in the run-up to my period is an absolute no-go. 

This cognitive carnage is (literally) on my mind at the moment as I have been offered an unexpected work opportunity which I really should take. I'm lucky enough to be freelancing for one organisation at the moment, this is a chance to pick up some work at another.

But what scares me is whether I am still as able as I was 15 years ago before MS introduced its roadblocks in my brain.

Can my beleaguered Numskulls still find their way around the disrupted neural pathways to make me any kind of decent prospect?

I don't know. I can only hope. I have a meeting about it tomorrow. Everything crossed that I don't say anything stupid/inappropriate/clueless/garbled or simply just forget my own name or why I'm there.

* There is some really useful information about cognitive difficulties along with explanations, support and coping strategies in this online resource from the MS Trust

:: Shake it out by Florence + The Machine

Stuck in the middle with you

Lengthy head/spine scan in a few days.
This calls for some MRI pie.

:: Stuck in the middle with you by Stealers Wheel