Friday, 15 May 2015

ME AWARENESS WEEK: JARED A CARNIE GUEST POST PART 2/3


Things We Have To Consider
Part 2/3
Read Part 1 here

4) The Clothing Dilemma


Faye is 25. She is (despite what she would tell you) stylish, pretty and slim.

However, fashion isn't the main thing to take into account when Faye gets dressed. Yes, she feels better if she manages to get out of bed and into day-clothes. But is it worth it if she'd be ten times more comfortable staying in her pyjamas?

Perhaps Faye has some jeans she wants to wear. If she then sits for too long or eats or drinks suddenly the denim becomes too uncomfortable and distracting for her to be able to focus on anything else.

Even if Faye does manage to get out of the house in a nice outfit, by the time we get home she will likely be so exhausted that I'll have to lift a dress over her head or help pull off tights etc. If she's spent time putting on make-up beforehand too, this could use up extra energy and make the time she can survive out of the house even shorter.

As for high heels. I've been trying to orchestrate a situation where Faye can wear them. She says she misses being able to feel nice in a heeled pair of shoes. For now though, they tend to not be too practical in the wheelchair. And I'm not sure the walking stick is even long enough to support someone wearing giant heels.



5) The Public Dilemma

Faye has faced some pretty rude reactions from people in the past. They range from giving her odd medical advice to outright telling her it's disgraceful that she is using a walking stick. These are horrible situations for Faye. Aside from being treated with hostility, which is distressing in itself, it becomes tricky to know how best to respond. Is it worth getting involved in an exhausting exchange in the hope that somehow the other party might relent and learn something about M.E? Or is it best, as Faye understandably tends to do in those very stressful situations, to smile politely and nod and not waste the energy?

If we're not taking opportunities to challenge ignorance do we have the right to be surprised when we come across it? But then why should Faye have to spend the rest of the day in bed over a small exchange that the other person will have forgotten five minutes later? When M.E takes so much of Faye's day as it is, why should it get to take even more just as a result of Faye having to explain what M.E actually is?

Of course, this is the catch 22 situation. You would hope that if you do explain enough times, if you do educate people, even though you will repeatedly exhaust yourself, eventually a point will be reached where you no longer have to explain anymore – people will already understand. However, this is incredibly difficult when there is the other, more easy option, of not engaging. Of course, that other option, whereby you skip the discussion to limit the devastating emotional and physical consequences, means that less people are being exposed to the reality of the situation and so those situations will continue to exist. It's an unfair burden for anyone to have to deal with.

Sometimes, people are polite and curious. Sometimes they listen when we explain M.E. They say they'd heard of it but only in the context of 'yuppie flu' and had no idea of what it was really like. Quite often though, people don't like being unable to pigeon-hole something. If you can't point to the bit of you where it happens, if you can't explain how you got it and how you get rid of it, people start to become more cynical and dismissive.

When I'm on my own, I do generally try to take the time to inform people as much as I can when it comes up. I have to admit I've been involved in a couple of conversations where people have turned out to be knowledgable and incredibly supportive. However, these are rare enough that they really do stand out as anomalies. It's so warming when you hear someone say “that's awful, it's so misunderstood isn't it? People don't know how serious it can be.”

I have to admit though, I've even found myself as a convenient shorthand telling people “you go first, Faye has a bad leg and I have to help her up” or something similar in order to quickly get people to move past so that I can continue helping Faye. There's no excuse for that, I should be trying to get across to as many people as possible the reality of the situation, but realistically, shamefully, sometimes it's just easier to have the shortest interaction possible so that you can carry on with the day. That way you don't have to worry about taking the time to explain and any reaction you might get.

Sometimes people's responses can drive me a bit nuts. They're either completely unaware or think they have the perfect solution. Once a woman told me that if Faye stopped drinking milk she would get better right away. It happened to her friend so it would happen to Faye too. Faye and I actually had tried various exclusion diets early on – so I tried to explain to the woman that there was more to it than that. I asked whether her friend had needed a wheelchair as a result of her condition. The woman became quite rude. She said Faye didn't need a wheelchair. She seemed to think she was offering me a golden ticket and didn't understand why I was refusing it. She insisted. Faye needed to stop drinking milk. That would solve every problem we had.


6) The Music Dilemma

I love music. Too much. Seriously. I don't have a particularly refined music taste. I don't get Mozart or even Coltrane. I just love listening to music. All the time. When I get up. When I make breakfast. When I walk to work. In my office at work. When I go to get lunch. Etc etc. It's endless.

Music informs a lot of my favourite memories with Faye. There's an album that had come out just before we went to Paris. We had our own flat and each evening when we had dinner on the balcony we listened to the album in full. Now whenever I hear it I think of Paris. Another album came out one summer when Faye and I started seeing each other. She would drive over to my work, pick me up, and we'd listen to the album while we drove to find somewhere to lie in the sun.

There were gigs too. We saw Daniel Johnston in a church. We saw Manic Street Preachers play every one of their singles at the O2. We saw Gaslight Anthem in a tiny London venue just before they first made it big on the radio. We saw Patti Smith and Bob Dylan at Hop Farm.
When we first moved in together we'd listen to Little Richard and Ray Charles and Aretha Franklin in the kitchen while we cooked. Faye would dance around while she measured things out. It made cooking one of our favourite things to do. Our house always had music in the background. This was all obviously before M.E.

Now, it's more tricky. Certain sounds hurt Faye's head. Anything too distorted is like a chainsaw to her brain. That's ok. I don't need Nine Inch Nails over my breakfast anyway. But it's an issue at other times too. Sometimes Faye will want to sit in the kitchen while I cook. I like having her there with me. It feels more communal. Occasionally I try to put music on but often it's too much. It's too difficult for Faye to focus on talking with all that background noise. She finds it more tiring simply being in a room where music is playing. If I cook for half an hour with music playing, by the time we have eaten dinner Faye may already be exhausted, and I have to think that perhaps if I hadn't had the music on, after dinner Faye would have still had a little energy to do something else. It's a difficult balance to strike. Faye still does love music. She just needs to make sure she's in a position to enjoy it rather than endure it.

It's still one of my greatest joys when I'm listening to something in the house and Faye tells me she likes it. However, now I have to pick my times more carefully. It's not worth bombarding Faye with excess noise if it means I don't get to see as much of her.



More Jared: www.jaredacarnie.com
Pre-order Jared's novel Waves on Amazon

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