11 years of living with MS: 11 lessons learnt

 

Actually I’ve been living with MS for over 25 years without realising it, but my official diagnosis came on 15 May 2006. If you’re interested you can read about that episode here – MS diagnosis: Great Dane or Chihuahua?  And if you want to know a little more about the realities of living with MS please read What it’s like living with MS

 
What have I learnt in that 11 years?

 
The answer to that is a hell of a lot. About MS, myself, other people, medical matters I never imagined existed or would need to know about, and most of it has been learnt through the school of hard knocks.

 

Here are a few nuggets to share, one for each year of being officially in this club.

 

1. I hate James Blunt!

 
Probably not the first thing that comes to mind when anyone else thinks about MS. But it was his whiny squawk I strained to hear above the deafening thumps and knocks of the MRI scanner that generated the images which sealed my fate.

 
“You’re beautiful” he bleated above the cacophony, as the room was invaded by a bevy of radiographers and a doctor injected gadolinium in to my arm in order to highlight the holes in my brain.

 

James Blunt is full of crap! Don’t listen to him!

 

 
2. Without Tesco’s delivery service both I and my cats would have died from starvation many years ago.

 

Popping out to grab a couple of bits isn’t easy when you have a leg that’s as useful as a chocolate fire guard, a trolley with satnav determined to steer you on a course to Ulaanbaatar, and a shop full of yummy mummies who insist upon fondling every avocado and blocking the entire aisle to regale their fellow mummies with tales of Timmy’s tonsillitis.

 
And don’t talk to me about White Van Man who decrees it’s perfectly acceptable for him to use a disabled parking space because he’s only going to be five minutes.

 

Suffice to say, I just can’t deal with it.

 

 

3. I know I said don’t talk to me about it, but since I mentioned it – disabled parking.

 

I love it and hate it in equal measure.

 

I love it because it enables me to get out and go places like so called “normal” people do.
I hate it because of aforementioned White Van Man and his ilk, and the self appointed Old Gits Enforcement Agency who have decreed that anyone under the age of 75 is not entitled to use a disabled bay.

 
But oh, how I love to see their pompous faces implode in their wrinkly creases as I limp my way to the boot of my car and haul out my rollator. So deflated are they that a mere whippersnapper in her nearly fifties might have a legitimate claim to this tiny rectangle of tarmac.

 
Disability doesn’t care for age discrimination.

 

 
4. If you have a jelly leg and a balance issue, a single step or stair without a handrail may as well be the North face of the Eiger.

 

Seriously, not a hope.

 

 
5. On the subject of stairs, if you can’t negotiate them on your own then you can’t go to the cinema. Think about it.

 

How many cinemas have you been to that have a handrail to get up the stairs to your seat?

 

Get yourself a CEA card and you get a free ticket for your buddy to help you up those stairs. Problem solved.

 

Most theatres and concert venues have a similar scheme and will give you a free companion ticket, just call their dedicated Accessibility number to request details.

 

You’re welcome.

 

 

6. It’s no coincidence that Physiotherapist rhymes with Physio-terrorist.

 

Enough said.

 

 

7. The NHS is fabulous. Really, it is the most incredible institution and I’m forever grateful that I’ve been lucky enough to get all the very expensive drugs I need and been under the care of a first class MS team from day one of diagnosis.

 

But, the mismanagement and total lack of resources is disgraceful. Every four weeks I get my MS fighting infusion of Tysabri, every four weeks I think this hospital resembles a war zone.

 

Any government who allows this situation to persist should hang their heads in shame!

 

Stepping off soapbox.

 

 
8. British pavements, much like British roads, are riddled with potholes and pitfalls. And they are very hard.

 

When your right foot stubbornly refuses to lift itself no matter how hard you tell it to, you can trip over a bit of fluff. The slightest undulation or irregular surface is likely to send you sprawling face first. If you think quickly you might be able to style it out and kiss the pavement a la Pope Francis.

 

I’ve mastered the art of falling down in a public place, it’s a piece of cake. It’s the getting up that is the problem. But in the words of the mighty Chumbawamba

 

I get knocked down, but I get up again
You’re never gonna keep me down.

 

 
9. Speaking of falls, pride comes before one.

 

It took me a long time to cotton on to this one and I have to give full credit to the brilliant Phil Friend and Dave Rees. They taught me that my stubbornness, refusal to adapt and accept help when I needed it, was actually causing me to disable myself. I was lucky enough to attend one of their courses, but I highly recommend their book

Why are you pretending to be normal?    No, I’m not on commission.

 

Once I swallowed my pride and learned how to, amongst other things, drive using hand controls, use disabled assistance at the airport, just say yes when someone offers to carry a suitcase for me and, latterly, invest in a mobility scooter, my world stopped shrinking and became a whole lot easier to negotiate.

 

You aren’t compromising your independence by making these adjustments, you’re actually empowering yourself to maintain that independence.

 

Don’t let your impairment disable you more than it needs to.

 

 

10. Carpe diem – seize the day!

 

There’s nothing like waking up one day unable to feel your legs to drive this one home.

 

No one knows what is around the corner and it’s true that anybody could be hit by a bus tomorrow. Living with MS adds another dimension of unpredictability.

 

If an opportunity presents itself or there’s something you have a burning desire to do, then be brave and find a way to make it happen. MS takes away too much already, don’t let it run away with you without putting up a fight.

 

I wrote a bit about this here Don’t let MS stop you learning

 

 

11. I have the best family and friends a girl could wish for.

They take the mick mercilessly and I wouldn’t have it any other way.
They are my rock and I thank my lucky stars for them every day.