Jenny It’s been a month since I last posted a blog and I wish I could say that I’ve been having a lovely time but, really, I have been performing a balancing act. A balancing act whilst walking the tight rope that is life with advanced MS.
Just when I think that I am handling things – the demands of family, my work, my MS and, well, just life – the tight rope slips underneath me and I find myself holding on to it for dear life. It’s like I can do well in only a couple of aspects of my life (at the moment, that is my work and taking care of the kids) before the others say, “you-hoo! You know how you thought everything was sorted? Well, it isn’t”.
Work vs Health
One of the most difficult things I’ve dealt with in regards to my chronic illness is finding the balance between feeling fulfilled through work and also keeping a handle on my health. I worked hard for years to qualify as a speech and language therapist and I love my work. I love the families that I meet and the fact that I’m able to help children have a voice when they didn’t before. It was hard, but I had to retire from the NHS due to ill-health in 2018 because of the impact that it was having on my life. I only worked three days a week yet I found that doing that meant that I couldn’t have quality time with my growing children because I spent all of my time off shattered and needing to sleep. At work, my MS symptoms were so that line managing a small team and working with complex cases became untenable due to cog-fog and being unable to think clearly about the needs of those that I worked with.
For me and my employers, the answer was early ill-health retirement. Taking it would mean I could still work, albeit with restrictions and ‘keep my hand in’ working from home. Fast forward to 2022 and I’m currently seeing 6 or 7 children a week over four separate days. Much more doable than the 6-7 I was meant to see in a day in the NHS. You’d think, right? But now I’m struggling again. And this is where the balancing act comes in – the reality is, I am slow. So slow. Slow getting up and dressed, ready to start the day. Slow preparing my therapy room for the children who come to see me. Slow sanitising all my materials after each use. Slow writing up notes after I’ve seen the children. And slow switching focus from my work life to my home life. I need to turn into the mum who cooks for her kids and is there to help them if needed with homework or even just to listen to how their days went.
Life Keeps Going
And in between all that work slowness? I still need to wash the dishes, feed the cats, have a nap, do my MS gym exercises, do my physio exercises, do my stretches, maybe have coffee with friends, food shop, keep the house tidy… it feels never-ending. In the whole balancing act of living my life with MS, something has to give. At the moment it is the MS gym, physio exercises, stretches, coffees and tidy house. In theory, a messy house should be okay provided it is safe to walk around but, as I’m a big believer in “tidy house, tidy mind”, missing out on both my physical exercises and tidying actually has big repercussions on my physical and mental health. And before anyone says, “what about the kids?”, they do help to a certain extent. That in itself is a balancing act; not wanting them to have to do too much – and therefore confirming their roles as young carers – and teaching them how to become responsible and independent adults as they get older.
The Chasm is Getting Bigger
I don’t know if it’s my age but I’m also really starting to see the great big divide between me – a chronically ill, physically disabled, single mum of two living predominantly on a small pension – and my friends. I’m at the age where the kids are getting older and I should be getting my life back; doing things for me, helping me to feel fulfilled. But multiple sclerosis has taken that away. I see friends moving forward in their lives, but I can’t. I can’t go running with friends to keep fit. Can’t challenge myself to climb the three peaks or go camping with the kids for a cheap holiday. I can’t spontaneously go on weekends away 1) because I can’t afford it and 2) because I need the time to research how physically accessible it’s going to be.
Life seems to be moving on for everybody except for me – In fact, mine seems to be going backwards. I’m going to have to reduce my workload and I no longer have a significant other to discuss interesting telly and good music with. On top of that, it looks like I’m going to have to move house but I have no idea where I can go (and that’s a whole other issue – accessible housing when you have a very low income). At the crux of the matter? My health just keeps getting worse and worse. I am a ‘glass half full’ person generally, but I have to say that it is getting harder to focus on the positives when they seem to be slipping away.
Social Media reminds me that taking care of your health when you have a chronic illness is often a full-time job. It can be hard to accept that when you see friends flying high in their careers, making life changes or simply moving on to the next stage of their lives with energy and excitement.
How to Find the Balance
I guess, for me, it’s about doing the things that bring me even a tiny amount of joy. Coffee outside, for example. I can’t wait until spring comes around again, because I know how much getting my face in the sun makes a difference to my mood. I relish the 10 minutes I spend every day simply breathing with the help of Aicha McKenzie and her daily breath class on Instagram, I use the time to breathe in essential oils to try and boost my mood. I’m currently using either this one, aptly called ‘Happy Vibes’ by Tisserand or Woman’s Balance from Neal’s Yard. Going back to the work thing, if I see even three children a week instead of my usual seven, maybe that will still allow me to find fulfilment from work whilst having a bit more energy to pick up my crochet hooks again, read another book and/or do the essential MS exercises and stretches that my body needs.
I have a feeling that finding balance in my MS life is going to be ongoing. I would love to hear how others manage it.
Till next time
Jen,I hope you can see AND believe that taking a different road than your friends doesn’t mean you are going backwards. Also you are navigating uncommon ground. Take the time to enjoy that coffee and celebrate the fact that you did get out of bed! I have no doubt you will find your way to YOUR comfortable or happy place in life. hang in there! Ty for sharing your struggles, it helps others to know we/they are not alone
Thanks so much Grace. Comments like this remind me that I am not alone too. I know that I will get there. Just writing it all out seems to have even helped 🙂
Great Honesty Jen as always. Not sure if you have tried getting your shopping delivered but it was a game changer for us. For me trying new things is my way forward to feel like I am making progress even if they are not working. I am trying the Tao Patch at the moment and I think it has marginally improved my balance. I am seeing a new physio next week to see if they can help. Keep trucking it is all we can do.
Your absolutely right Adam, I think that trying new things helps me to feel like I am somehow keeping on top of it too. I will look at the Tao Patch. Good luck with your new physio! It would be interesting to hear if they have heard of the patch and rate it. I have actually started getting my shopping delivered and, you’re right, it does help a lot – a bit more pricy than going to the local Aldi but so much easier! Also, I am lucky that my kids are now old enough to pop to the local Esso for milk if needed 🙂
Thank you for sharing this. Could be describing my life. I’m struggling with finding positivity at the moment despite having supportive people around me. It’s the loss of “my life” as I saw it. No words of wisdom, sorry. Just trying to think ahead to warmer weather and sitting in the sun.
You know what? Just hearing that others ‘get it’ helps me so much. Thank you and here’s to better weather very soon hopefully!
Jen you are a ledge and your tenacity is admirable- you go girl! 3 kids a week, delegating jobs to the kids (JK Rowlings mum had MS and look how that turned out)and focusing on doin as much as you can for you and your MS is the future chick. Yes it’s a very tenuous balancing act and there are good days, bad days and fcukin impossible days, but knowing and accepting this helps you to get your big girls pants on and focus and concentrate on what’s important- which is YOU YOU YOU
Take one day at a time chick, change and adapt to what you can and accept and adapt to what you can’t? Good luck
Thank you so much lovely, that is just what I needed to hear 🙂 🙂 🙂
I want to plan….and I’d like to be spontaneous at times, but MS doesn’t let me do either. How can you balance or adapt to something that is so inconsistent….so unpredictable? This might be another scenario where we need our own, unique, MS word rather than balance.I don’t feel like I’m balancing, so much as accepting whatever comes. And accepting doesn’t mean that I have to be happy about it.
I can’t remember where I saw it, but someone said, “The problem with planning when you have MS is not that I can’t do things, but that I don’t know if I’ll be able to do things when the time comes.”
I’m not helping at all, am I? You did help me though. Like Grace said above, it helps to know we’re not alone, that I’m not the only one that struggles sometimes.
Thanks so much as ever Ben, for your lovely and insightful comments. I think that you are completely right about needing another word than balance… we need to make one up especially for us! I think the unpredictability is what can make it so tough – it isn’t simply a case of struggling with disability but also knowing how it is potentially going to change and affect us in the future. And how much it will. It is scary when things are already difficult for us. Sorry, I am not helping matters either! But, as you and Grace said, knowing I am not alone helps SO much. So thank you 🙂
Hey Jen, I am so sorry that you are going through a rough time. Unfortunately, as I read your post, I found that I deeply related to the words I was reading on my screen. I resonated so much when you wrote “life seems to be moving on for everybody except me…” I often feel the same, feeling stuck and incredibly lonely and isolated. I, too, have had a tough time seeing a deterioration in my symptoms, which has had a massive impact on my mental health. But, I hope you know that you are not alone, and I don’t think you are going backwards just moving forwards more slowly than everybody else. I hope that you manage to find a good balance between all the areas in your life, and life with MS. We will all be rooting for you. And I am always online if you ever need to chat, just reach out xx
Thank you so much for your comment Rhiann, I have just been catching up with your blog posts and I am so sorry to hear that you have been going through the same. I think that you have hit the nail and the head in regards to the loneliness of it all. It also impacts on my motivation levels/causes more fatigue so I struggle to keep up sometimes with things that I usually love to do (such as keeping on top of reading blog posts!). It helps me so much to hear that other people understand, though I am sorry for both of us that this resonates so loudly. xx
It is so difficult to have to change our lives to accommodate our disease. I applaud that you have made decisions based on what’s most important for you, and what’s best for your health. It may feel like you’re going backwards, but you are not. You’re taking the reigns and doing what honors your heart and your health.
Great post!! Wow, Jenny, I can SO relate to everything you said here. I always feel this way – there is so much I WANT to do, but my energy and time are so limited. But this year, I got COVID in January, on top of my ME/CFS and Lyme, and my energy and stamina are still lower than is “normal” for me. I was pretty much bedridden and useless for 3 weeks last month, so I just feel like I am behind in everything!! I’m not only not working on my goals, I still haven’t finished WRITING my 2022 goals! ha ha
My issue is part of what you said here: by the time I get finished with necessary self-care stuff (stretching, cooking healthy food, and since COVID needing even MORE sleep than usual), I feel like I have so little time left to be productive and it’s all taken up with “must-do” tasks – paying bills, getting groceries (though grateful I CAN do that again), laundry, etc. There’s no time left for writing (which is my career) or well, fun!
Sorry for the long rant, but I’m sure you can see that I GET IT!! I;m right there with you. I wish I had some magic answers for you, but I’m struggling to find the right balance, too. Maybe it helps a bit just to know you’re not alone – it helped me to read your post!
Sue
Live with ME/CFS
P.S. Don’t feel bad about getting your kids to help around the house! Ours were sick when they were young (one still is) at the same time I was. My husband and I were just saying today how they’re both such huge slobs now as adults! lol Really wish they’d been well enough to pitch in and help back then so they could develop some better habits 🙂
Good luck with the balancing act!
Sue
Well said. I am right there with you but older and the kids are grown. I went downhill in a few short years. Life is one big nap. I am not really working anymore. Just was too much.
Thanks Angela, work is definitely getting more difficult for me. I love what I do, just struggle to find the energy!
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