Wednesday 25 May 2011

and so it goes, and so it goes....

It's World MS Day today.

*blows tiny party horn*

The purpose of the day - and of MS Week in general - is to raise awareness of both the condition and the charities that help support sufferers. As the MS Resource Centre puts it, "100,000 people in the UK are currently diagnosed with MS and countless more are affected by it. MS Awareness Week will hopefully spread more understanding of this life altering disease and more compassion to those whose lives are affected on a daily basis".

It's really hard to describe how having MS feels - not least because it's at least a little bit different for every single person who has it.  That doesn't stop people trying, and I've put one of them at the bottom of this post, below the video....

The thing I find about stuff like this is that it doesn't really describe the things I feel.  Yeah, sure.... I know a few of those symptoms all too well, but.... well... it all sounds a bit whiney to me.  I realise that I'm lucky enough to hardly be affected by my MS at all: I took part in a huge survey of people with MS this week, and for almost every question about how it affected me, I was able to say that I was able to do most things the way I had done them before.  There are plenty of people for whom MS has completely turned their lives upside-down, and it is not as simple as having a positive mental attitude.  I'm acutely aware of how lucky I am, and of what may (or may not) await me.

Perhaps, as relatively unaffected as I am, it's easy for me to say, but I have multiple sclerosis and there is nothing I, or anyone else, can do about it.  I have a choice: I can let it take over my life, or I can carry on with my life regardless.  Maybe if and when my condition deteriorates, I might change my mind, but as of now I don't see that as a difficult choice at all.

The footballer, Eric Abidal, may play for Barcelona in the Champions League Final on Saturday, mere months after surgery to remove a cancer that was threatening his life, never mind his playing career.  It's an amazing story, and I was really taken by something he said in an interview, published today, about how his experience had changed him:

"I now know how to differentiate between what really matters in life and what doesn't, I have sold my cars because they are pointless. When you play football you can buy whatever you want but, when something bad happens to you, you realise that [material possessions] are worthless. Now I will invest my money in hospitals, in helping children, in good causes.  I have changed a lot. You only have to look around to see what is happening in the world: wars, children dying of hunger. There are more important things in life. Football is small and unimportant alongside that."

I'm not about to start my own charitable foundation or anything like that, but being diagnosed with something like MS can give you pause to stop and look up at the world around you.  I love running and swimming and all the rest of it, perhaps even more so now that it's harder than it was before... but if I wake up tomorrow unable to do any of it; perhaps even unable to see or to get out of bed, then I hope I'll find something else to keep me busy instead.  Life goes on.

When they ran the first World MS Day in 2009, they produced a video.  I've posted it here before, but I think it's fantastic: being diagnosed with MS is a scary thing..... but it's categorically not a full stop; it doesn't have to be the end of the world.

Well, I think it's inspiring anyway.

Here's that thing I found online:

Understanding MS

When we say we can't do something because we don't feel well, put yourself in our shoes by using the examples of our symptoms below

What You Can Do To Understand:

Painful Heavy Legs: Tightly apply 20 lb ankle weights and 15 lb thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how are you feeling?

Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk. If we are mad at you we would prefer needles to pebbles.

Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil. If successful stab yourself in the arm.

Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw, preferably daily.

Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments. Wear them for an entire day.

Tingling: Stick your finger in an electrical socket - preferably wet.

Tight Banded Feeling: Put 12 inch wide belt around you. Make it as tight as you can and leave it there for the entire day. How’s your breathing?

Injections: Fill one of our spare needles with saline solution - saline won't hurt you. Give yourself a shot every time we do a shot.

Side Effects from the Injections: Bang your head against a wall, wrap yourself in a heating pad, wrap your entire body tightly with an ice bandage then finally treat yourself to some food or drink that's gone off.

Trouble Lifting Arms: Apply 20 lb wrist weights and try and reach for something on the highest shelf in your house.

Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves. Then go dancing.

Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one...Bzzzzzzzzzzzz zzzzzz

Balance and Walking Problems: Drink 100 proof alcohol and then sit and spin in an office chair for 30 minutes. Now get up and see what happens.

Urgently Needing to Pee: We put a 0.5 litre remote controlled water bag and drip tube in your pants and point out 2 restrooms in a crowded mall. Then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day.

Pins and Needles: Stab yourself repeatedly with needles all over your body.

Dizziness (Vertigo): Sit on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real (without killing yourself of course) take the sleeping pills with a small sip of wine.

Bowel Problems: Take a 4 day dose of an anti-diarrhoea medicine followed directly by a 3 day dose of stool softeners. Repeat for a minimum of 3 weeks. At the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appear.

Burning Feeling: Make a full pot of boiling water and then get someone to fill a water pistol with the boiling water and shoot it at you all day long.

Intention Tremor: Hook your body to some type of vibrating machine. Try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

Buzzing Feeling When Bending Head to Chest (L'Hermitte's): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

Vision Problems (Optic Neuritis): Smear Vaseline on glasses and then wear them to read the newspaper.

Memory Issues: Have someone make a list of items to shop for. When you come back that person adds two things to the list and asks why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

Foot Drop:Wear one swimming flipper and take about a 1/2 mile walk. Nothing else needs to be said for this one - you'll get it.

Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

Fear: Dream that you have lost complete feeling in your feet. When you wake up you wiggle your feet, and they don't move. Think about this every night, wondering whether something on your body won't work the next day when you wake up.

Swallowing: Try swallowing the hottest chilli pepper you can find.

Heat Intolerance - Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel. Even a person without MS would feel bad.

Now add all of the above symptoms - welcome to our world!

Finally... after subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counselling is the answer.

We don’t want pity – we just want understanding!


See what I mean? Sounds whiny to me.  Some of that fits they way I feel, but not all of it, and not all of the time. 

As Kurt Vonnegut said: "Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward".

I have MS. So it goes....

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