Sunday, 8 March 2015

Jive Talking

Talking is good, right?

Well, up to a point - or more specifically, it's good when it tells the whole story. A little learning, though, really can be a dangerous thing.

This past week has been a case in point, and one that's very much true to my own heart. It's no big news to many, if any, of my regular readers when I say I have MS (Multiple Sclerosis), but for many of them their impression of the condition was changed this week by a television programme.

It isn't a programme about the condition itself - heaven forbid that such a wide-ranging topic affecting so many people would ever be considered for mainstream coverage - but rather it's one of the seemingly endless spin-offs related to the upcoming Red Nose Day (next Friday's worthy charity day , the 30th year we will have witnessed it).

Rather, it's The People's Strictly - itself a spin-off from the hugely successful BBC Strictly Come Dancing show (Dancing Charitably). One of the six 'lucky' contestants is Trishna Bharadia and, as has been pointed out rather loudly on the show, she suffers from MS, I've heard a lot of knee-jerk reaction about how good that must be for 'the rest' of us fellow MS sufferers - finally, some publicity on mainstream TV in the UK that does not involve a certain Swiss clinic. Good, yes?

No. Not if the true impact of the condition is not addressed. Not if it leaves the watching public with the opinion that all of us MSers could jive like Trishna is about to do. And most definitely not if it leaves others thinking that this nasty, evil disease is nowhere near as bad as they have heard us lead them to believe.

The fact - the unspoken fact - is that Trishna's version of the condition is, while debilitating to a degree, currently one of the milder forms of the condition. The fact that this condition has multiple symptoms that affect its six-figure suffering population was not even mentioned, and certainly not the crushing nature of the condition for so many people. It would be churlish, bordering on plain nasty, to suggest that Trishna has it easy, but the truth of the matter is that for a huge number of MSers, jiving isn't just impossible because they can no longer walk properly, let alone dance - the very memory of being able to strut on dance floors can itself hurt, a reminder of pre-MS days when life was so much better.

The biggest unspoken fact is that there are multiple versions of the condition ranging from occasional bouts of numbness and imbalance through to constant pain and a complete inability to so much as move unaided. And within those conditions, there are countless symptoms that assail sufferers at every turn - sometimes on a permanent basis. Even within the various sub-types, no two MSers will suffer the same symptoms in combination. Oh yes, MS is a very personal condition.

That the BBC has failed to address this issue is unsurprising - it would take several series just to list all of the potential issues that an MSer might face - but it's also damaging for those of us who face difficulties far more serious than the ones faced by Trishna.

No joke - one person contacted me to ask whether I shouldn't consider something like dancing to help me take my mind off things. Quite apart from the fact that back in the day when I could attempt such a thing I looked more like the horsey version of Nijinsky than the premier star of ballet, these days I have to pre-plan a trip to the television if I want to switch channels manually.

It's very fortunate for me that we live in such an accessible, digital age. Of course I took time to assure the person concerned that my condition was different from the young lady's - that there are multiple basic versions of MS, never mind a plethora of potential symptoms which may or may not impact any particular sufferer - but I could sense the doubt lingering there. After all the BBC had said... You get the drift.

Fortunately there is the wonderful MS Trust to call on with almost as much information on its quite brilliant website (yes, I'm biased - I wonder why?) - The MS Trust - as there are symptoms of the disease.

I make no bones about the fact that I am using my post this week to try to redress some of the balance after the BBC's People's Strictly coverage - the harm that incomplete picture painting can do. I don't want this damned condition, of course, but I certainly don't want people to misinterpret what I have. I'm going to use a series of posts here - most created by the very worthy and aforementioned Trust  - to try to let you all know what it is we're truly facing every day of our often miserable lives,

I want you all to read what's written here and try to understand why it's such a vile condition - and why it is do different for every one of us. Please, try to get the image of jiving MSers out of your mind and look at some of the broader truths.

I'll start with the basics, a guide to just what the condition really is. The link understanding ms takes you to a very useful page which shows just how varied and invasive the condition can be, and in many ways, this is the most important link of all. There are more sufferers than a football stadium - even Old Trafford or Wembley - could hold, and with so many variations on symptom sufferance there's probably close to as many combinations of the disease and its affects than there are people who have been simply diagnosed with MS.

After that, there's a real need to address the myths of the disease in another Trust link, the myths, in which you will find not only information that relates to misinformation (so to speak) but you will glean other truths about what the disease means for sufferers.

A quick look at one of the most common first symptoms, optic neuritis, is naturally useful at this point but it's also worthwhile visiting links that look into the most common symptoms of the bitch... sorry, of MS, which include fatigue, affecting pretty much all of us, and the misleadingly pleasant-sounding hug which can be an ever-present nightmare.

And that last link above also demonstrates how, even within a symptom of the wider MS condition, there are endless variants on what might help (loose clothing or tight, as an example in this case). And it's worth noting at that point that there is no cure - only assistance - available. And precious little effective assistance.

The link to a video variances should give some insight into why no two days are alike for most of us - which bitch is nastier - and that should help in explaining mood swings (which is, in itself, yet another symptom of the condition).

My final link, though, is to the Trust's quarterly newsletter - more appropriately, a magazine - Open Door, which offers invaluable support and news for all MS sufferers - and those around them.

This section is important to all of us with MS, in that it gives links to the broader truths that 'nice, charitable TV' doesn't seem to have time for. It's important to all MS sufferers that the condition is properly understood by all around us - and I haven't even mentioned the plethora of 'related' conditions that might arise as a result of having MS (Trigeminal Neuralgia anyone?) or the damage that falls and other MS-related accidents may cause.

Please don't get me wrong, though, when it comes to that misleading and potentially damaging television show. I wish Trishna every success - especially as she is a fellow MSer. And don't think that I consider her as 'having it easy' compared to me. I sincerely hope her condition does not deteriorate too much in years to come, but remember, as things stand right now it's a life-long condition and in all probability, she will be facing her symptoms for a whole lot longer than I will.

There are all sorts of us out there in the ether (and in here trying not to trip over level floorboards). and we might have MS, but that can only enhance our range of experience, Not necessarily nicely, but that's not our fault...

Remember, keeeeeep tolerating people and try to understand the wealth of struggles that they might be facing....

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