england

Going to England was a different experience for us. Daniel and I have never actually travelled together just the two of us. When I came home from England the first time, his visa was not yet approved so I had to come alone and he came a couple of months later. The next time we went, we had Stephanie with us, and all subsequent times we had kids with us too.

Deciding to go – just the two of us – was hard. I didn’t doubt Stephanie, Dean or my Mum’s willingness to make sure that the kids were looked after. I did struggle with whether or not there would be difficult moments or incidents and whether or not it was fair or reasonable to leave them to deal with that. Abigail had really wanted to go. Not because of anything in particular, but because she doesn’t like to miss out on things and she doesn’t like to think that we aren’t there to do what she wants or needs. When we pointed out that she’d be bored as batshit because there would be no internet and no TV (the accounts/TV license etc were all cancelled soon after Allan died,) no other young people to talk to, and the majority of the time would be spent sorting through and cleaning the house, and it would be fucking cold, she decided maybe it wasn’t so bad to be missing out.

In the time between when we got booked and got the dates finalised and when we left, I did all I could to make them all as prepared as possible so it would be as easy as I could make it for them to manage. The three kids actually took it upon themselves, with no prompting, to plan out a menu for themselves for the not-quite two weeks that we would be gone and I stocked the cupboard/freezer with all I could in advance to minimise the amount of shopping Stephanie and Dean would have to do. It was arranged that Abigail and Kristian would go to my mum’s over the weekend, so they planned with her what they would have/do while there as well. That way Stephanie and Dean got a bit of a break. During the week the kids had to go to school as well so it was not like full 24 hour days that they had to be supervising them.

I still had a bit of worry that there might be an explosion or something, but Stephanie and Dean knew what to do if that happened and I kept reminding myself that we don’t have to cancel our lives because of that possibility. What we need is also important. It was important to Daniel to go. We did not go when Lisa died. That wasn’t a problem, we had seen her six weeks earlier and we were quite aware that it was going to be the last time. We were comfortable with that choice. But this time it was not ‘just’ Allan. The things that needed taking care of, the house that needed clearing out, the belongings that had to be sorted, donated, thrown away, etc. It was both of them, even though he was the only one living there for the last four years. It was the last chance to do something for his parents, and he wanted it not just for himself but so that it didn’t all fall to his siblings to handle. As it is, there is a lot they have to do anyway because we are simply unable, being so remote. When I say ‘they,’ I mean Nikki and Lee, because.. well, Sandie. Chris is the executor anyway so technically it’s all his job but it’s not like anyone is going to just ignore it all and leave for him to deal with.

Something else I thought about a lot is whether or not I was physically up to doing this. I wanted to go with Daniel for multiple reasons, of course primarily because he’s my husband and my heart and I wanted to support him because his Dad had died and it’s pretty shit. But there was also that the whole diabetes thing was still very new and being my strict and paranoid self, I wasn’t sure I could trust anyone else to look out for his needs as obsessively as I would. And like, England food is different. We had been eating so much salad and I knew that winter in England would be.. not very salady. He also was committed to doing the right thing and eating smart, but sometimes forgetful or just not aware when things were ‘yes’ or ‘no’ since I am the main meal planner and maker and had done a lot more research than he had a chance to given that he works full time. So my second reason was because he needed me to look after him. He said he needed me too, not because he’s a useless idiot who can’t look after himself but because he is unaccustomed to having to think about a lot of these things since those are my responsibilities in our team, and trying to start thinking about them all in a foreign country while you’re in a heightened emotional state is a big ask. And it was good to have him say he needed me. So often I feel like I don’t do enough, because I want to be able to do so much more and to have him tell me that he does need me and that what I do does make a difference was really meaningful to me.

Anyway. In terms of my health, I figured that my activities would not be so different in terms of physical demand to my normal life and if it did turn out to be too much, I made sure I bought plenty of medicine with me, which it would not be a problem to take since I did not have to make sure I was available as a responsible and alert adult who could drive. (We only had access to a manual car so I couldn’t legally drive anyway.)

As it turned out, I had a really good couple of weeks. A lot of what I usually do was greatly reduced as well as being shared by Daniel. We only had to feed ourselves, we only had our own clothes to wash and dry, when we went to the supermarket he was there to help and we were free to move as slowly as I needed because we had the luxury of time to go at my pace. The first day after we got there I was feeling pretty terrible and had to keep refreshing the PFs regularly, but I think that was a result of airplane confinement and the ludicrous amount of walking that happens in airports. And though we did a lot of emptying of cupboards and shelves and drawers, and sorting through all of the stuff we found, I was able to sit for a lot and we also took regular breaks when it started to get boring or painful, and the breaks were actually breaks. At home when I take a break from one thing it usually means going and doing another thing for a while so that one part of my body stops hurting and another one starts. Hips hurting from doing dishes? Go and fold up some washing until the burning in my back becomes too much. I didn’t have other jobs to do and other responsibilities to make sure I managed to complete before everyone got back from school and work so when I sat or laid down to take a break I could actually let go and relax. It was ok if I fell asleep for a bit. The opportunity to take real breaks and listen to my body and move at my own pace without constantly feeling the push of the clock and the weight of responsibility and the need to manage everything before I got too tired and too sore was quite eye-opening. Because I am figuratively wading through molasses so much, making a lot of effort to achieve what sometimes looks like so little; because I am so exhausted by what I do manage but I am also victim to that social expectation that the modern woman should be able to manage home, kids, hobbies, a job, a side business, a perfect relationship, charitable work and do it all with ease and grace; I feel like I am letting my family down. Not having to manage what I usually do made me see that I do a lot more than I often give myself credit for and having the luxury to listen to my body to keep the pain and exhaustion at minimal, manageable levels was a reminder that I am doing enough. It was also a bit sad to feel so comparatively good and remember that for most people, that is normal yet for me it felt almost revelatory.. oh yeah, this is what life is supposed to feel like. That you become so accustomed to hurting and aching and pain and exhaustion that you literally cannot remember what it is like to feel ‘normal’ is one of the hardest and cruelest parts of having a chronic illness. Because the aching and hurting and tiredness become normal to you, it is easy to forget that your normal is not everyone’s normal, and when you feel like you’re not achieving much it’s so hard to not blame and doubt yourself.

I even felt good enough for us to decide to go for a recreational walk around the lake one day. I don’t know when the last time I felt like that at home was. Sometimes we try to do things like that anyway, because I get tired of not doing things, but it’s always with the knowledge that it’s going to come at a price. Anyway. We did try to go for a walk and it was nice but we stopped for a rest at a bench and then we decided that was enough of a walk not because it was too much for me but because it was FUCKING FREEZING. It was also very late in the afternoon, like maybe 1530 or something ridiculous so it was starting to get DARK and even colder so we were like, nah, fuck this.

england

unexpected thingsĀ 

It is the unexpected things that really hit me hard. I started this out thinking I was just saying something about my body and muscles and bones but I realised that it really kind of applies to my mind as well. But anyway. Yesterday I did a thing, which ai thought was a productive thing to do on a Saturday afternoon, and instead it turned out to be a stupidly ill advised thing which I am still paying for more than 24 hours later. The thing was washing some windows. A while back we got one of those things you attach to the hose to wash windows but we didn’t get around to doing it and I took my curtains down to wash and noticed the windows were a bit dirty so I thought I would do that. In hindsight, I can see exactly how it was a bad idea. Second storey windows means holding the bottle of stuff with the hose up high over your head to aim it at the windows and then continuinung to hold the hose up in order to rinse it all. Anything that involves uneven usage between the sides of my body is a big mistake. Strangely enough, though it is often the case, the muscles protesting in tightly knotted pain are the ones up and down the left side of me, but it was my right hand and arm I was using to do the window washing.

But obviously I did not have the benefit of the hindsight before I did this and it seems like such a simple and innocuous task to do, not one that will leave you in such pain that you look at yourself in the mirror as you are washing your hands after going to the toilet and find yourself thinking about people with the “suicide disease” and wondering if this is how they  (Because the connected muscles have tensed up all the was from below my scapula, up through my neck, across my scalp and down into my cheek.) I know that this will settle down in a couple of days, though unfortunately I know it will also happen again despite my best efforts to not do wonky things. Sometimes it just happens with no apparent triggering activity. Sometimes it’s not my back-shoulders-neck-head-face but the muscles right in the lower back and around my hips. This seems pretty common from what people say in a fb group I joined. Also from that group I have come to the conclusion that as shite as I sometimes feel, what I am experiencing is quite mild compared to many others. Sometimes people share the x-rays and MRI pictures of their spines, and some of them are really fucking horrifying. And this is all for a condition that many sources still list as causing little to no pain. And lots of doctors are telling people they shouldn’t be in pain from Scheuermann’s Disease and essentially telling them that they are wasting time. How any somewhat sane person could look at the imaging of these bones and expect a person should have no health deficit due to their condition is beyond me. In one that I saw, the lady’s spine was so curved that it was almost U shaped. 

I feel like I shouldn’t be complaining when there are people worse off than me. Though logically I know that the suffering of others does not negate mine, there’s that entrenched mindset we have been taught that we should not complain about our lot if there would be people who’d be happy to take it on because of how much of an improvement it would be for them. Only the poorest and sickest can ever feel sorry for themselves. The rest of us should just be grateful because “it could be worse.” Like those two things must be mutually exclusive. I am glad that I’m not more curved but that doesn’t mean I don’t imagine what it would be like to have a spine that holds you up the way it is supposed to, doesn’t make you look like a freak, and muscles that are not so over-tired that it takes very little to make them knot up.

unexpected thingsĀ