I’m a control freak! There, I’ve admitted it. My husband will be pleased that I have finally done so, he’s been teasing me about it for ages. Have I always been one? I don’t think so. From what I remember, I used to like things being a bit unpredictable, not quite knowing what can happen, and seeing where the day takes me. Such as on a night out, when we could end up anywhere. Or when my husband and I went travelling to Thailand (pre-kids) and all we had was literally the rucksacks on our backs, with no plans on where to stay or exactly where we would go. I remember travelling on the overnight train down to Koh Samui from Bangkok – getting very little sleep due to worrying about getting robbed – and then wandering round the next day trying to find somewhere to stay.
The me now would hate that. I like things to be planned, predictable. I like to know when things are going to happen and how. I like to be know exactly what I’m doing and feel confident with any plans.
So, what’s changed? I’ve been thinking about this question; I’m not a hundred percent sure, but I suspect it is a mixture of getting older, having kids, and the fact that my chronic progressive illness, Multiple Sclerosis, has reared its ugly head in regards to symptoms and limitations.
Having kids makes you grow up; suddenly you’re not the most important thing any more, they are. And, as we all know, children often thrive on routine and spontaneity tends to fly out the window when taking care of them. Everything needs to be planned and prepped before even be able to head out the house, otherwise you’re left with a screaming baby and not enough nappies. As children get older (in my case, aged 7 and 10) school and extra-curricular activities mean that your ‘free time’ is still not usually free; the world always revolves around your children when you’re a parent and you have to be super organised in order to fit everything in.
Now add Multiple Sclerosis to the mix and life becomes a military operation. You have to fit in all of those child-friendly, routine activities, while also finding the time to rest, exercise, rest, meditate, eat well, rest, have quality time with the family, sleep, work, rest ….. did I mention rest? Having a chronic illness takes time; so much time that there is often not the opportunity to be spontaneous any more. In my case, I worry that if I don’t organise everything, my health will suffer, making me feel more stressed and, as a result, my MS symptoms will worsen further. Sometimes I wish I could just forget it all, go back to being ‘spontaneous Jen’, but then I realise that I can’t. The need to plan has actually been imposed upon me, because of my illness. It takes a heck of a lot more time to leave the house when you have to organise a scooter instead of just nipping out the door with your keys. You need to make sure that you have the energy to undertake the activity that you’re about to do: have you got enough spoons or will you have to wait until another day? And if you do do it today, have you got time tomorrow to rest, to make up the energy that you’ve used?
Yes, I definitely wish that I could be more spontaneous. However, I think by that I mean I wish I could go back to a time when I had few responsibilities. I now have the responsibility to take care of my family and also myself. And planning and prioritising now helps me to feel in control; if that makes me a control freak, so be it. The one thing about Multiple Sclerosis is that you actually have very little control, it’s an unpredictable disease. So for me, prioritising things like rest, meditation, exercise and sleep and making sure that these are part of my week helps me to feel that I am doing the best I can for my chronic illness. Being a bit (a lot?) anal about keeping the house tidy helps me to not worry about tripping on random items and makes it a lovely place to come back to after work. I truly believe that the saying ‘tidy house, tidy mind’ is true – now I just need to convince the kids! Researching and planning before I go out helps me to not worry about whether there will be a seat that I can sit on or whether the restaurant is disabled friendly; the stress that ensues when I haven’t planned or researched is frustrating and not fun. These are all things that I didn’t have to think about in the past, but changes in my circumstances mean that I now have to. I completely understand how it doesn’t always come ‘naturally’ to those around me – I’m sure that I wouldn’t have thought much about if I wasn’t disabled or ill.
So, it can be hard; I’m not the same person that I was 15 years ago when I was young and carefree, but what almost 40-year-old is? Especially if they are now married and have a family or responsibilities other than themselves? It can be difficult to differentiate between what I would have been like without MS, with what I’m like now, with it. I guess I’ll never know. I like to think that I would still be making the most of life, going on spontaneous weekends away and lovely days out with my family at the drop of a hat; I feel sorry for my children that we are very rarely able to do that. But I do know that what I lack in my ability to be spontaneous, I gain in my ability to prepare and plan things so that my husband and children can get the best of me, despite my chronic illness.
Do you feel like you’ve changed since you’ve been living with chronic illness? Have you become less spontaneous due to the need to plan? Or perhaps you’ve gone the other way and you’ve decided to seize life and make the most of it? I’d love to hear what works for everybody.
Have a great week everybody!