Hiding in a plain site.

Recently I was approached to take part in a radio programme on MS and caring which is planned to be broadcast on a regional station sometime in the near future.

A producer had come across this blog and had wondered if I’d like to give my account of having MS in my life and being a carer. I must admit that it was a tempting offer. Perhaps I might get the opportunity to debunk a few myths about MS and disability? I might also get to tell the story of being a carer. About how, for me, they are full time responsibilities – more than full time. Maybe I could redress the iniquity felt by carers when faced with the dreadful press we get from various corners of the media. It was an appealing idea but it didn’t take me long to decline it.

Why? Because while I’m happy to write about how being a carer affects me – and that’s what this blog is – I’m not prepared to concede control over what comes out about MW. If she decides to say something herself, that’s fine. But it won’t come from me.

While I’ve given a little information out about me – and us – I like being able to hide behind the anonymity an on-line blog gives me. I may change my mind in the future but this is how I feel now. If I was going to participate meaningfully in a radio programme, it would have been ludicrous to say “I’m not going to answer such and such a question” or “I’m not prepared to tell you that about me”. Particularly if I wanted to give a full and honest account of life as a carer, which it merits.

I’m also wary of people’s reaction to what I write. It’s a little scary putting your head above the parapet and opening yourself up to the opinions of others. I’m not going to pretend that everything’s a bed of roses in life, and sometimes I’ll want to write something that’s critical of the life I find myself/ourselves in, or even critical of MW. I have a lot of thoughts born of frustration and this blog allows me to vent those thoughts. And sometimes the subjects I don’t write about are the ones that affect me most deeply.

I’ve also become aware that, very occasionally, people will project their perceptions or assumptions of my character onto me, which have been mostly positive but don’t take into account that this blog describes what happens to me. It doesn’t give the full picture of who I am. I’m not naïve, I can imagine the stick I’d get if those people were to think that the real me doesn’t stack up to their perceptions. I’m as sensitive to criticism as anyone. More so – I don’t have a very thick skin. Right now, I don’t think I could handle the grief that might come from exposing everything about me and my life on a radio programme.

On the surface, I might seem calm. But deep down, sometimes I’m scared as hell.

We can’t all be unique. Can we?

Pictograms of the Paralympics 2012 - © copyright belongs to LOCOG and IOC

I’m not known for giving opinion on this blog. It’s usually more of an outlet for what’s swirling about in my head. But we have the Paralympics taking place in London right now and I’ve been interested in public reaction to people with disabilities; reaction to the achievements at the Paralympics, media coverage of those Games and to disability in general – including opinions from social media, and the potential reaction of UK Government to it all given their programme of welfare reform.

Prior to the Paralympics, certain strands of the media have taken great delight in portraying all disabled people as “the shirking classes” ¹. Now the Games have begun, the position has shifted slightly towards “Aren’t the Paralympics proof that even the most physically challenged can achieve awesome feats?” ² – with emphasis on “most physically challenged”. I’m not going to link to these examples because I don’t want to drive traffic to their sites. As you can guess, I disagree very strongly with both viewpoints.

Since the start of the Paralympic Games, I’ve lost count of the number of occasions I’ve seen sentiments written on Twitter along the lines of the second example above. Hashtags such as “#anythingispossible” are, I imagine, well-meaning and innocent on the surface. Others like “#inspirational” very accurately describe the achievements of those taking part in the Paralympics.

However, my personal experience of disability, such as it is from a carer’s perspective, is different. I can’t agree with the one-size-fits-all approach to disability (or anything else for that matter). Is it reasonable to think that anyone with a disability can just rock up and be able to perform like that? No. It’d be ridiculous to think that. Those taking part are individuals. And are only representative of themselves, maybe their disability, but they mostly represent their body’s ability to perform despite the limitations they face. Note the words “their body’s ability”.

I’m sorry but no amount of positive thinking is going to make someone’s body do what it is incapable of doing. No matter how determined you are, your thought processes can’t control your nervous system if it’s broken. It’s “#onethingthatisimpossible”. I see MW struggle to do the most basic things, such as feed herself, and it makes me angry that people in positions of influence, i.e. the media, are so blinkered by their particular dogma that they are happy to write articles and “opinion pieces” which all but say that disability is just a matter of attitude. That just isn’t true. My personal experiences tell me so.

When opinion becomes a tool with which to drive Government policy, it becomes a little more insidious. Comments from some Government politicians watching the Paralympics seem to hint at a belief that Paralympians ought to be the example that all disabled people should aspire to. They’re suggesting that disability is something that can be treated in a catch-all manner. It would be very convenient for all concerned if that were true but it isn’t.

I’m not looking to denigrate the achievements of those who are competing at the Paralympics. Paralympians are, like Olympians, the best at what they do. They are elite athletes. We should all note that they are the exception and not the rule.

1. http//www.dailymail.co.uk/news/article-2018874/Incapacity-benefit-Just-1-14-sickness-claimants-unfit-work.html – by Kirsty Walker

2. http//blogs.telegraph.co.uk/news/cristinaodone/100173256/the-disability-rights-lobby-should-think-twice-before-opposing-necessary-reforms/ – by Christina Odone

No glee, no win.

Something struck me today while having a coffee with a friend. And that’s the effect on other people when I describe what happens in my and MW’s lives. When I’m asked how things are going, I’m often torn as to just how much I say. And I’m never quite sure just what to say. I’m not going to lie about it, there’s no point in that. Everything I say or write has been absolutely honest. Which is my point. It’s honest, but it’s grim. Or, at least, it can be construed as grim by some. Even skimming the surface of things can be unsettling.

If I say that things are difficult, it doesn’t really explain anything. So, I’ll expand on that. Only slightly, mind. MW is deteriorating, she’s losing feeling from the waist down (let alone lost movement). She’s losing upper body strength and sleeps a lot. The need for sheltered accommodation is very real now. In our forties. There you go. What’s that? *counts* 3 sentences? 3 sentences that give an idea of what’s going on but don’t delve too deeply. Trust me, there is a lot more detail that I don’t talk about. But when I say them (or write them) in response to being asked, “How are things?”, I get the impression that it’s an awful lot to take in. And, I guess it is. I see the person I’m talking to imagining how things are and how they’d deal with things in the same position – and that imagining is done in a split-second – and I see the realisation that it really is difficult. I live with these circumstances every day so I’m hardened to them. But I’m sensitive to the way others react when they hear (read) what’s happening here. I don’t want to bring your mood down by telling you things. I’m not going to lie to anyone though.

I’ve started pausing………………………..before answering the “How are things?” question. Because I’m aware that the reply is a bit of an emotional hand grenade. So, if you do ask me how things are, I’m not ignoring you – I’m just thinking of the best way to tell you without ruining your day.

Burbling blind

Friday night/Saturday morning – 00:35.

I usually take my time over these posts, making sure they make sense before letting them out “in the wild”. I’m pretty self-critical – no, actually, I’m extremely self-critical – and this extends to writing posts. I try not to depress the shit out of you, gentle reader – or me, for that matter. I also try and make sure I’ve got something vaguely interesting to write about before putting finger to keyboard. I haven’t got that vaguely-interesting-something tonight, that “hook” to hang the rest of the post on.

It’s not for lack of anything in the news. Jack Osbourne has recently been diagnosed with MS, presumably Relapsing Remitting MS. I’ve got something swirling about in my head about this but I just can’t get it out. I wish him and his family well for the future. It’s also the end of Carers’ Week in the UK. I’ve not followed enough of the goings-on, even locally, to use it as a subject. I can’t even summon the vitriol to wade into Jimmy Carr, tax avoidance schemes and their knock on effect to welfare services. I’m too preoccupied with what’s going on here.

No, it’s just me burbling tonight. Frankly, I’m trying to find something that’ll make me smile. Because this week has been hard. After taking MW to the dentist, it’s come to light that she’s been struggling to clean her teeth for a while now. One of the first things you’re taught as a child is to clean yourself. Brushing your teeth is one of the basic planks of personal hygiene and now I’m going to start to do this for her. Since MW already has to be assisted to shower, this really shouldn’t come a shock. I mean, it’s a natural progression of the difficulties she has. But assisting is one thing, actually taking over doing a thing entirely is another. I’ve noticed a real difference in her upper body strength for some time now. It’s harder to get MW dressed because she can’t move her body as freely as she could even up to about 4/5 months ago. I know she can tell there’s been a change for the worse recently. I don’t know how she’s going to take to having this done for her. I don’t know how *I’M* going to take to doing it. There’s no manual to cleaning someone else’s teeth, is there? Fuck.

The week started pretty crappily too. Last week, MW had a routine eye-test. She’d realised that her eyesight was deteriorating and thought it was something that could be improved by stronger lenses in her glasses. So, off to the opticians. Half an hour later we’d been told that the optic nerve in her left eye is very, very pale. Her eyesight in that eye has deteriorated to 6/120 when aided with lenses. This scoring puts her at legally blind in that eye (at least, according to information I’ve looked at online). The sight in her right eye is compromised too but not to the same extent. The optician’s advice was to contact the specialist MS nurse with a view to being referred to an ophthalmologist for further tests and remedial action. I rang the MS nurse on Monday. Sadly, she told us that there’d be no referral. The optician’s default setting when they can’t remedy eyesight issues is to refer the client to their GP for further action. In MW’s case, the paleness of the optic nerve is due to nerve damage cause by MS. The damage is untreatable and irreparable. The only thing to do is note the optician’s findings. Double fuck.

So, after all this news, what do I do? Spend tonight looking at Richard Pryor documentaries on YouTube. Breaking my cardinal rule of not Googling this shit because it will fuck with your head. I’ve spent most of tonight crying. Probably because the crap news has kept coming this week and seeing Richard Pryor struggling at the end of his life in a wheelchair made me think of the future. And all I could see was bleak. Another cardinal rule broken. Double teary fuck with bells on.

Jack Osbourne tweeted to the news organisations which have started printing all kinds of horror stories in the wake of his diagnosis. His tweet reads, “Dear journalists…will you please stop sensationalizing my situation to sell ur poorly written magazines and papers. I AM NOT DYING!”. In his case, he’s right – even though worst-case scenarios make for much better stories and paper sales – Jack Osbourne is not dying with MS. But fuck me when MS is progressive, it’s hard to look at the disease and not see darkness.

Dear blog, Happy 1st Birthday!

I’ve just realised (at 21:09 BST) that this little window on my personal world is exactly a year old today. In that first year I’ve made some new friends, met some lovely people, and had some of the most kind messages of support and encouragement.

I’d do individual thanks but there are lots of people to mention and, a) I’d be frightened to leave anyone out and, b) this post would get all Gwyneth Paltrow and no-one wants that.

I will say thank you to anyone and everyone who’s taken the time to read anything on here. It does mean a lot.

I’m not done blogging yet though…..

Caring – the never-ending shift.

I had a conversation with another carer recently. This conversation took place on a Friday night but it only really began after we’d wished each other a good weekend. And we both recognised the truth that, although the weekend was about to begin, there would be no distinction between a weekday and the forthcoming so-called days off.

This is something I’ve only acknowledged to myself over the past few weeks. When other people are looking forward to a couple of days relaxation away from work, I just feel flat. Simply because there is no line between Friday evening and Saturday. There is no end of shift or regular day off. I never really know what to say when people wish me a good weekend. I’ll reciprocate the sentiment, of course, because I know that weekends are important to people for all kinds of reasons – time off work, time to see family, and so on. But for me, and the other carer I was talking to, each weekend is very much like every other day – and that includes birthdays, Christmas, etc. That’s because the symptoms MW has are constant. She needs to be got out of bed, washed, dressed, have food made for her, have her catheter emptied, be taken to the toilet to defecate – the list goes on. MS doesn’t take a day off for her.

This realisation was reinforced today by news of a poll carried out by the Carers Trust which says that 60% of carers feel isolated, suffer from depression, are physically exhausted and have financial problems. The story’s case study featured Norman Phillips, a man who had to give up his career to care for his wife who suffers with MS. Norman said that he’d pushed himself to the point where he became depressed, injured his back through moving his wife, and ended up in a cardiac unit after collapsing. He was exhausted – his shift never ended.

The Carers Trust poll seeks to highlight to Government that the UK’s 6m unpaid carers are in need of more support in their never-ending shift. I wonder if they’ll listen?

From zimmer, to glimmer, to…?

“Will I ever walk again?”

“I don’t know.”, I said, with an expression somewhere between pain and pity.

Now, we both know the answer to this question. No. MW won’t walk again.

Three things tell me that.

1. MW hasn’t been able to walk for the best part of two years.

2. MW cannot stand, cannot bear weight on her feet. One of the basic things we take for granted as people.

3. MW has had no feeling in her feet for months, and has trouble moving them independently.

And yet I was compelled to say “I don’t know”. To offer a tiny glimmer of hope despite the glaringly obvious staring at us both. I couldn’t say it. I couldn’t say, “no”, and take that tiny glimmer away for good.

What would you have said?