It’s the time of year where I start to hear phrases like ‘I better get rid of this cold in time for christmas’ or ‘It would ruin my Christmas if I was ill’. When feeling ill is your norm, it gets you thinking about the way people talk about and approach illness in general. Having a cold won’t stop you enjoying Christmas, it’s annoying, but it’s not the end of the world. But then I don’t think having adrenal insufficiency, which actively does stop me from being involved in the Christmas time festivities the way I used to as something which will ‘ruin my christmas’. I won’t manage everything I want to, there’ll definitely be a nap or two involved and I can’t drink alcohol and ‘be merry’, but that’s all ok. I’ll still have a nice day!
I follow some other chronic illness blogs on Twitter and some of their approaches to their illnesses seem very different to mine. Some of them use their blogs as a venting space, others to raise awareness… Everyone needs different things because we’re all different people, but the way you think about your illness has a massive impact on your mental health which then ultimately effects physical health. If you see illness as ‘ruining your life’ and are constantly in that mindset, you’re potentially adding more layers and symptoms than you actually need to be and making yourself suffer more: sometimes the thought of it is actually worse than the physical aspect of it. Everyone has moments where they want to bitch and moan and complain about how unfair things are, me included because feeling awful all the time clearly sucks, and I’m definitely not saying people shouldn’t have negative feelings about illness, but there’s a difference between a temporary response in having feelings about something specific and an overall state of being.
I’ve had an unsettled couple of months where I’ve spent more time at the ‘worse’ end of my scale than I have at the ‘normal’ or ‘good’ sides. To demonstrate the different ways I could think about things internally, I’m essentially going to write the same thing twice using two different ‘inner voices’. I would usually use expletives if I was ranting but I’ve taken those out!
Focussing on the negatives of my illness
I’m really, really fed up of this stupid illness. I feel like I’m getting virus after virus which means stress dosing and tapering which makes me feel terrible. I don’t even have anything obvious i just feel weird and then spend days not getting out of bed. I haven’t left the house by myself since July, I’ve lost all my independence and can do even less than I could before and my mood is terrible. What’s the point? The last couple of weekends I’ve been told I shouldn’t leave the house and avoid doing anything I don’t need to do like showering and getting dressed because I need to rest up. Which meant cancelling some plans and not being able to do things I wanted to do. I did go to a carol service this week but I couldn’t manage to sing a whole verse never mind a whole carol. So depressing. I couldn’t decorate the Christmas tree the way I wanted to either. And usually I’d be baking and going to Christmas markets and parties and playing in musical events about now and I can’t do any of that. I’m so sick of feeling sick and having to change plans and worrying I’m annoying people. I’m also fed up of people moaning about coughs and colds like it’s the end of the world because if I get an illness then I usually have to go to hospital and it takes a couple of months to recover. Hardly the same. Everything seems to be getting progressively worse.
The last couple of months have been a bit hit and miss. I seem to be getting a lot of viruses which means changing my dose and just generally feeling more poorly than usual. However, I’m about to start tapering to my baseline and didn’t need to go to hospital this time, so that’s progress. And even though I got it wrong last time dosing wise and was admitted to hospital, I didn’t need resus and lots of IV HC like the times before that, so that’s still progress too. I’ve been housebound more than usual because it’s not a good idea for me to go out alone and I can’t walk or drive anywhere anyway, which, I’m not going to lie, is a bit upsetting. But luckily I’ve had Christmas knitting and Christmas card making to preoccupy myself with which I’ve really enjoyed. I’ve also been told to limit my going out even with my husband or other people the past couple of weekends and to avoid doing things I don’t need to do like getting dressed and showering, which, again, is frustrating. But some of my friends have been really great at coming over and keeping me company or ringing /messaging for chats or bringing things to me or picking me up and planning things really close to home that we can do together, which has been great- I’ve got some wonderful friends. Besides that, I had a good week this week and went to a carol service, for example. Ok, so I couldn’t sing the carols all the way through but I still had a lot of fun and the choir were amazing. I’m lucky one of my friends is a nurse which means that I can go out and have fun and do things a lot easier than otherwise, and if we need to change or adapt plans that’s ok too. I’m actually quite proud of what I did achieve this week and the fact that I’ve stayed clear of hospital despite having a virus *touch wood* so resting up this weekend rather than going out seems like a good compromise! Plus it gives me an excuse to watch Christmas films!
I try really hard to get my inner voice to think in the second way. I’ve always made a point of trying not to be bitter about things where I can. I jokingly award myself gold stars for doing trivial things. Sometimes I don’t manage it and I have a period of being in the first one, but that’s still ok. Everyone has their ranty moments where you moan about how unfair things are. It would be abnormal not to. But if you permanently live in that state, you end up missing the good things that do happen, even if they’re minor victories in comparison to other people’s. And then when things get worse, you’re even less equipped to deal with them mentally because you haven’t had the positive glimmers in between, regardless of how small. It’s like walking around with a nail in your foot, it starts off as a small annoyance but the longer it’s there aggravating the same spot it gets a tiny bit worse a lot more quickly every time you put weight on it. There’s a difference between ridiculous positivity and being grateful for what you do have though- overwhelmingly positive isn’t helpful either.
It’s a bit of a gamble living with a chronic illness because it would be easier to not make plans so that you’re not disappointed when you can’t manage them. Or to have few expectations of yourself so that you don’t fail. Or to avoid having dreams completely because you’re probably never going to achieve them. The thing to remember though is that everyone has those thoughts or issues at some point, except people with chronic illness might experience them on a daily basis whereas others have them less frequently. If feeling helpless and low becomes a regular thing, then there might be some underlying depression as well which needs treating, just to add to the problem! We can’t control the fact that things change a lot more for us than others, but we can control the way we think and respond to situations emotionally in general, so we end up surfing waves rather than drowning in a tsunami.
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