Thursday, 14 May 2015

ME AWARENESS WEEK: JARED A CARNIE GUEST POST PART 1/3




Things We Have To Consider

Part 1/3

Faye has M.E.
Faye has a thirst for life.

These are two undeniable truths. They are also two truths that butt heads constantly in our day to day lives. We have to respect both. To solely focus on M.E would be to leave Faye feeling unfulfilled. To plough ahead mindlessly ignoring the difficulties and consequences that come with M.E would be foolhardy and potentially disastrous.

Faye asked me to write something for her blog and I wasn't sure I had anything to offer. I don't feel that I have either the knowledge or the right to offer any insight into M.E. I have nothing to complain about either. My life is great. I'm certainly not the right person to write about how difficult life with M.E can be. And to write anything indicating that life with M.E isn't difficult would be downright dishonest.
Instead, I figured I would write about trying to find the right balance between managing M.E well, and managing our lives well.



1) The Social Dilemma

One of the best things about moving to Sheffield was being near a couple of Faye's best friends. They have been incredibly supportive. They'll pop over every now and then and aren't offended when Faye says she isn't up to it. They even drive over to pick Faye up so she can come to their house instead. To be able to get out of the house isn't something that should be under-appreciated.

There are evenings where Faye is doing well. She is feeling great to be with her friends. She is enjoying a cup of tea and managing for the most part to follow the conversation. She is doing better than she usually manages. This is where it gets difficult. If she stays out longer, if she waits until she stops being able to follow conversation, until she feels herself starting to stutter and struggling to talk, she has obviously pushed herself too far. She knows there will be payback tomorrow. However, if she doesn't have plans tomorrow, maybe she's ok with feeling terrible in the morning? It's certainly easy to feel that way at the time. It's why people will always accept extra shots even though they know they're going to have a hangover in the morning. It doesn't seem relevant at the time.

The sensible thing to do would be to leave. To cut it short. To end the evening while Faye is still feeling reasonably in control. But it's difficult. Maybe she hasn't spoken to her friend for weeks and half an hour wasn't enough time to catch up. Maybe they don't know when they will be able to see each other again and it seems a shame not to make the most of the time they have together. The problem is, pushing it always has consequences. And those terrible days and weeks of fatigue are what we are trying our hardest to avoid where possible.



2) The Work Dilemma

Faye and I are idiots. We make life decisions based on nothing at all. Seriously. Yesterday Faye told me about a blog she likes where the writer had moved to Bali. Now we are both under the impression that we're going to do the same thing. We'll operate under that assumption until something new and shiny distracts us and that becomes our new plan. Last week some friends of ours said they were considering moving to the South West. By the end of the evening Faye and I had decided we were moving there with them. Now we have to break it to our friends that we're moving to Bali instead.

Knowing all this, it should come as no surprise to you that we moved to Sheffield from the Isle of Lewis without any set plans. I had no job sorted. Not even an interview lined up. I remember standing in our kitchen on Lewis and saying to Faye “if they have an ME/CFS centre in Sheffield and you're already familiar with the city (Faye did her degree there) surely it'd be a good place for us to live next?” I mean, that's not verbatim, but it's the gist of what I said.

“You're right, let's do that” Faye said. So we did.

So we arrived in Sheffield to a rented house we had not seen (our very kind friend Sasha had visited it for us) and no work plan.

Fortunately (especially given my lack of talent/qualifications) I got a few interviews and subsequently a job very quickly. It was three days a week at the university. The pay just about covered rent and we had saved enough the couple of months previous to cover bills and stuff for a little while. The contract was only for three months but it was money coming in until I found something more substantial. Plus it gave me more days a week at home to help Faye – which after an exhausting move seemed particularly important.

We soon got into a fairly decent pattern. I was getting to know the city little by little, work wasn't too tiring at three days a week, and Faye was enjoying (or at least so she said) having me around more. We even managed to get the wheelchair onto the bus into town every now and then.

I got an extension offer on my contract – six more months and five days a week. It was a miracle. I'd been looking for other jobs but it hadn't been going too well. Five days a week would just about cover rent and bills and we were running out of money fast.

The issue was, we were doing better. We were managing better. The extra time was allowing us to do more together. Not only that, it also gave Faye the safety net of me being around so she didn't have to worry about wasting energy on making meals etc.

Ultimately, I had to take the contract. We didn't have much choice and we knew I was very lucky to have been offered it. Sometimes we do think though, if only I had a little extra time to help Faye at home, maybe she'd be able to manage more. Of course, if I was working less, we probably wouldn't be able to afford a home to be together in, so perhaps this isn't as much of a dilemma as it first seemed.

In fact, I'm sure most people probably think If only I didn't have to work. I could write a great novel or run a marathon. Of course, if they were given the time, they wouldn't do anything, they'd re-watch Breaking Bad and lie in more. The thing is, for a moment, we had a glimpse of what we could do if I did have more time at home to help Faye, and we did do it. Only in our case, the marathon wasn't 26 miles, it was making it to the bus stop. Although as anyone with M.E will tell you, for them, that's no less an achievement.

3) The Chocolate Dilemma

A very tricky one.

When Faye is feeling particularly terrible I start scrambling for anything that might cheer her up. I think there are probably three foolproof possibilities. Three things that were I to bring them home would immediately make Faye feel better. They are as follows:

1) A puppy
Fortunately, we do already have a mad little dog, Teddy, that keeps Faye company during the day. Unfortunately, our house is not big enough for me to bring home a new puppy each week, so I have to rule this one out.

2) Ryan Gosling
Unfortunately for Faye, and fortunately for the self-esteem of men across Britain, Ryan Gosling actually lives on the other side of the world. As a result, he is not something I can pick up from Tesco on the way home.

This leaves me with:

3) Chocolate
As pleased as Faye is to see me when I get home usually, nothing compares to the expression she has when I come through the door carrying chocolate. This tends to not only help her mood but also sometimes help her body feel a little better too. Unfortunately, it's not always that sensible.

Whilst chocolate might feel like the thing a poorly body most craves, taking on board that much sugar is often counter-productive for a body trying to find the strength to recover and function more efficiently.
This is probably where our self-control lets us down most. When I'm desperate to find something to cheer Faye up, I often opt for chocolate even when I know I shouldn't. And if I do leave Faye in bed with a big bar of galaxy next to her, who can blame her not being able to resist digging in?

 Part Two          Part Three

More Jared: www.jaredacarnie.com

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