Day to day management of an invisible illness

Sometimes having an invisible illness is a great thing (well, obviously the illness isn’t great. Just the invisible part). I can get on with my day without having people wonder what is wrong with me, or asking personal questions. It can also be tricky, though, in situations where I would really benefit from having an obvious issue which, for example, encourages people to give me a seat on a train. It’s also hard when I need to use a wheelchair or scooter – when you look absolutely fine, and can get in and out without issues, people are obviously looking on and wondering why on earth you need it.

It can also make managing the illness hard, as people just won’t understand that whilst you may look and act absolutely fine, underneath you are battling a range of symptoms which need to be carefully managed otherwise you’ll be a million times worse later on.

One of the most important ways in which I manage my condition is via pacing. It involves making sure I don’t push myself beyond my capabilities, letting myself reach that ‘crash’ point. If I am going out in the morning with the kids, I will plan to rest in the afternoon. If I have a busy few days at work I will make sure I have work from home days scheduled in afterwards. It’s been a long slow process to get to this level of activity though.

For a long time pacing would involve making sure I spent about 80% of my day resting, with the other 20% carefully spread out to avoid overdoing things. If I wanted to blowdry my hair, for example, I would need to schedule in at least 30 minutes of lying down afterwards. Driving to the Dr for yet another round of tests needed hours of rest either side.

Sums it up pretty well 😁

Another way I manage my condition is by saying no. I have learnt the hard way that if I agree to do things that I know I’m going to struggle with, whether it be for politeness, a sense of duty or because it’s something I really want to do, I’ll suffer for it afterwards. Sometimes this suffering is worth it, sometimes it isn’t. Either way though, being able to say no to things is really important, if easier said than done.

If it’s work related I worry about letting people down and not doing my job properly. If I am cancelling plans with friends I worry they will get fed up with my unreliability. The worst thing to say no, to, though, is anything involving the kids. They are becoming more and more aware of the fact I can’t do certain things, and have to go for rests or change plans at the last minute and it can be utterly heartbreaking to feel that I am letting them down.

If I don’t listen to my body, though, and try to push through the fatigue or pain, I might manage it for a little while but that crash is just inevitable. It might be a migraine that leaves me barely able to open my eyes for days at a time, or a bout of fatigue that leaves me too exhausted to speak. Depending on how long this lasts (could be days. Could be weeks), it is almost always worse than if I’d just said no to The Thing, whatever it was. The kids might have been upset I didn’t make it along the the park yesterday, but at least today I’m able to sit with them and watch TV rather than hiding upstairs as I can’t tolerate light or noise. Work may be pissed that I’m working from home again, but at least I’m not off sick for a week. And my friends? Well so far they have all been amazing and no one has dumped me yet 😁

The final way I try to manage my illness day to day, and kind of the point of this blog really, is to make sure I am doing more than just ‘surviving’. I spent a long time when I went back to work making sure every ounce of energy I had was going into making sure I was able to work, trying not to go off sick again, trying to perform well. Weekends would be spent in bed or on the couch resting. Evenings would be spent resting. Any attempt to add in more activities resulted in a backslide and I just didn’t feel I could afford for that to happen. But that meant I wasn’t seeing friends, wasn’t spending proper time with Garry, and wasn’t doing anything that could constitute parenting with the kids.

Thankfully, things slowly got a bit better and I could manage some of those other things and I realised how much better that made me feel mentally. So now I try to make sure I have that balance – I love my job, I want to keep my job. But I also need more than that in my life and the kids are growing so quickly – I already feel like I’ve missed out on so much. I can’t let their entire childhood slip by whilst I am doing little more than lying on the couch, surviving one more day.

It’s probably worth mentioning though, that none of the above would be possible without the most amazing partner a girl could ask for. There is no way I would have survived this illness and the adjustments I have had to make, if I didn’t have a husband who has taken over almost 100% of the house and kids stuff, and is supportive of every trial and error step I make on the road to recovery ❤

2 Comments Add yours

  1. Clare Gibson says:

    Hi Katy,

    I didn’t want to read and run. I follow your Facebook so knew from the little bits you posted there about your ME. I just read through the whole of your blog.

    I’m not going to offer any words of wisdom or tell you about someone I know who has ME, because I don’t have any.

    What I will say is that the very fact that you have written out this thoughful, insightful and coherent blog in just a few days, shows that some things must be improving, even if it’s still a far cry from how they used to be.

    I really wish you well in all your endeavours to get your life where you want it to be. I hope that Garry and the children are all well.

    Take care and all the best,
    Clare

    Like

    1. My New Normal says:

      Thanks Clare that’s so lovely.
      I hope you are all well and are enjoying family life.
      Garry and the kids are good. Xander is loving school and Eliza is pushing more boundaries every day 😁
      Take care
      Katy xx

      Like

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