Living · MS Life · Spoonie Parenting

Bye-Bye Spontaneity

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!

Jen 2


Cover: Photo by Patrick Perkins on Unsplash

33 thoughts on “Bye-Bye Spontaneity

  1. For me not having everything planed means i can remain my spontaneous self. Mind you i have no kids. I have always hated routine and done things on spur of moment, you could say I’m a “Tad” impulsive 😉😉. So hubby and I just do what we feel like, obviously at times we have todo certain routine things, then we play.
    Being this way I feel makes the unpredictability of MS much easier to cope with, if I can’t do something, hey ho, tomorrow is another day.

    Liked by 1 person

      1. For me it’s only way life is always up and down for me. Like today rough day pain level ridiculous, couldn’t really do much. Then have email about new car with dealer passing buck to adaptation company which brought my mood down more. Then get email from hubbies brother to say the shadow on mothers lung is cancer, she to poorly for chemo or radiotherapy and wants to see her kids before she goes. Hubby and i going on dream holiday to Cape Verde on Monday!!
        Now after an evening on net we flying to UK tomorrow, leave here in about 4 hours, then fly back to Madrid on Monday to catch flight for holiday.
        I didn’t have energy to bung tea in oven but have just finished packing for 2 countries, 1 cold 1 hopefully not so cold. I’ll have 2 weeks to recover, then back home.
        Just as well I don’t do boring.

        Liked by 1 person

  2. “Life becomes a military operation” – I find this often when leaving the house for more than an hour (and I don’t have kids or MS!) It’s a tricky one for me because I spent years with less spontaneity in some ways before the stoma. I HAD to plan more then. I don’t think I’ve really adapted to the stoma nor am I fully appreciative of the benefit it’s made, perhaps in part because other issues have become worse and taken over. Spontaneity isn’t something that sits well with me and it’s not something that’s easily done at all, but then again planning I find to be quite hard too because I never quite know how I’m going to be from one day to the next, especially with pain and fatigue, so plans have to change a lot. Definitely a topic that’s made me think Jen! x

    Liked by 1 person

    1. I’m glad it made you think, I wrote it after something my husband said. Of course, some times we can’t plan (I’ve just had to travel to go to a funeral, when I wasn’t sure on the date it would be – it was kind of sprung upon me) and I can do it, it just has a negative effect on my health. I’m glad that the stoma has helped but sorry you haven’t get the full benefit because of other issues 😦 I hope that this week is ok for you xxx

      Liked by 1 person

  3. Hi Jen, I am exactly the same way. I am not spontaneous at all, I can’t be. I have to plan everything so I can plan the energy around it as well. You can’t spring anything on me. It’s unfortunate but my life is very structured and very planned because of my MS too.

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  4. I have never been a very spontaneous person However, now I am even less so. However, when I do decide that an activity can be done on a certain day, I try to make the most of it! And I know you all do as well! Even though I can’t be spontaneous, I try to live in the moment whatever that maybe.

    Liked by 3 people

  5. If I’m completely honest I think I’ve always been a bit of a control freak who liked to plan ahead! I was definitely in my element teaching/leading a department as I could plan and organise to my heart’s content! Now I get frustrated because in some ways I have to be more spontaneous and I find that hard, such as not being able to plan my weekend as I don’t know if I’ll be up to doing in advance and the disappointment I feel when I have to cancel plans. Planning ahead does help when it comes to researching or creating reminders and making the most of the good days. xx

    Liked by 1 person

  6. I am exactly the same way, although no kids but I do have elderly cats and there is illness in the house other than mine (I’m the one that got electrocuted and has the epilepsy now). Youth is such a great factor that only when I don’t have it do I understand how much it helped me get through any number of illness, tough times, poverty, whathaveyou, romances gone bad. Youth can bestow a kind of resilience that makes a vast difference. now, no spring chicken in years although I feel as young as ever in some ways, I am at home every day, often on my own, and I become a control freak since it feels like it helps me to know exactly why something is in this place and something else goes on that shelf, and this room is closed off because it’s too cold and whatever other details I have found out the hard way. I think that having reduced work outside of the home also made me see my household as my work, so it matters to me that I make little or big efforts and they are seen and respected by the others in the house. Now that I have an office outside of the house I am expanding to be a control freak there too!

    Liked by 1 person

  7. Ah yes Jen, I totally get this. Despite having different illnesses and our kids being different ages, I feel our situations are very similar. As an almost 40 year old too (yikes!), I do look back in longing sometimes to those backpacking days and trips to Thailand! It was so liberating to be able to be so spontaneous wasn’t it! Like you say though, having both a family and a chronic illness to contend with means everything needs careful planning. It sometimes feels boring but I agree it’s most definitely essential! xx

    Liked by 1 person

    1. I know that lots of people can identify with me, despite the different illnesses 🙂 I think that because my husband is maybe a bit more spontaneous I have to take the job of organisation for both of us! Have a fab week! Ps I have decided to pretend that I am not 40 this year and instead am 30 🤣 xx

      Liked by 1 person

  8. I wish I could say that I have not always been a control freak because I honestly have been. I have always wanted everything to be planned out and organized! I think it is probably because I have a mother that was not a planner and was drunk a lot when I was young. I always had to be the responsible one that could get things together quickly! Now that I have to deal with this exciting illness, MS, I still have to try to keep things on track. But, MS sometimes does not allow me to be the planner I have always been. It likes to throw curve balls at me. But, I guess sometimes you just have to roll with the punches!!
    I hope you are doing well and have a wonderful week Jen!! Stay strong and positive as you always do!! Sending you lots of love and comfort!!!

    Liked by 2 people

  9. Thank you for your post and for the generous comments of your readers. I’m new to your blog, but look forward to hearing more of your insight. I’m a control freak that manifests as not making any plans at all because I want to have the option of keeping control of my free time if it’s needed, or doing something spur of the moment if I feel like it! Living with a chronic illness is hard, but certainly brings more focus into one’s life. Keep on pushing forward!

    Liked by 1 person

  10. Again. AWSOME post… I’m a complete newbie to this MS journey and my 3 boys keep me going. My aim is to be a inspiration to them. That when crap happens we can overcome, we can smile and laugh. By me going through this if my three boys grow up more compassionate, loving, amazing people, then maybe just… maybe there is a wee golden nugget in this MS for me.

    Liked by 1 person

  11. I am trying NOT to plan everything, (it rarely goes as I plan). I think the reason I am a control freak is because I feel like I have no control over MS ( I don’t know how I am going to feel day to day or week to week) so I obsess about a clean house and routines etc. The reason I am trying to “let go” with the planning though, is because I get all upset when things don’t go like I plan…still struggling with this one. My “current” system is making a plan a, b, c, etc, but I spend so much time and energy overthinking EVERYTHING now, I need to be more spontaneous if thats possible

    Liked by 1 person

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