Jenny Making Adjustments to Try and Make Things Easier
Today is the first day of my new working week. I work 3 days a week as a speech and language therapist, helping kiddies with complex speech and language disorders. Until last week, I grouped my working days together – Tuesday, Wednesday, Thursday – with the idea that I can ‘get it all over and done with’, and that I would have a long weekend, every weekend.
I love my job – it gives me a sense of purpose, it makes me feel useful and important. I continually assess, plan and revise what I am doing, reflecting on what worked and what didn’t. At the same time, I need to make it fun for the kids: bubbles, games like hide and seek and snakes and ladders. But all this mental and physical stimulation takes its toll; on my drive home in the car, I yawn away, so much that my eyes water. I mentally count down to when I can go to bed… first tea, then stories, then kids’ bed, then me. My days off work are spent sleeping; on a ‘good’ day, I might be able to do a bit of yoga and meditation, but to be honest, those days are getting fewer and fewer.
My new working week looks like this: Monday off, Tuesday work, Wednesday off, Thursday work, Friday work. We are lucky that the kids usually stay at their Grandparents’ house on Tuesday night, so that affords me the luxury of a possible lie in when normally I would be up, sorting the kids out for school and getting ready to leave for 7:30am on a work day. I slept until 10am today – 3 1/2 hours later than my work alarm would have woken me up!
The purpose behind adjusting my days is that I am hoping that having a ‘midweek break’ and not working more than 2 days in a row might help me feel a bit more rested. Will it make a difference? Who knows. If I am honest, my gut feeling says ‘no’- no amount of rest takes me back to that blissful time when sleep would leave me feeling awake and refreshed – it feels like those days are long gone now. But I can only try and hope for the best, I want to show that I am doing everything that I can to be able to keep working. The option of dropping responsibility/days is not an option to me, as it would have such a negative effect on my pension. If only I could win the lottery! (Maybe I should start playing it?!)
For those of you with chronic illnesses, have you had to adjust your work patterns? Did you find anything to help? Was there a time when you realised that you could no longer keep going due to your ill health?
Part of me envies you for still trying to work, the other part of me feels sorry that you do. I continued to work for just over a year after I got sick, but the pain and fatigue finally won back in May and I resigned. I hope changing your schedule works out, but try not to beat yourself up if it doesn’t. 💕
Thank you. I do feel very torn between trying to keep ‘normal’ and trying to keep myself as healthy as I can be. I do think the MS is winning unfortunately. Thank you for your comment xx
I love your attitude Jen. And I’m glad you’ve got the energy to put your thoughts down in words. Can’t think of you as anything other than as you were in the 1990s though!
Thanks lovely. I am the same! I still think of myself as Jen from the 90s. She’s still in here somewhere, just hidden by a malfunctioning body! Thank you for sharing my blog – I write because I hope that it helps others xx
I should add, I’m still Jen from the 90s, albeit a bit more sensible!
My son has just been discharged from speech therapy 😊 I very much appreciate what you do!
I have been diagnosed only a month ago. I have a desk job. I don’t have to see anyone so I can work from home (which I partially do anyhow). My work have just ordered my a bean bag to put my feet up under my desk. I find having my feet up high really helps with fatigue and makes a huge difference. Hope you can keep going xxx
Thank you! It is nice to be appreciated 🙂 Sounds like you have lots of support from work, mine have been supportive too, but it has to be a bit limited I guess due to my job role (I would love to see the kids from my home!) xxx
Hi Jen, Fatigue can be a b****. I was diagnosed in 1980 when I was 32 years old. I’m now 68 and it’s a lot harder for me to get around. I can’t walk very far (and not at all without a cane) and can tire easily. Nonetheless, I worked, full-time, in the news media until I retired at the end of 2012. That involved stress and travel, some of which was international. To do this, however, I broke down and bought a small travel scooter about ten years ago. It was the best thing I ever did. The scooter allowed me to save LOTS of energy and to go places I couldn’t have gone without it. Between work and recreation my scooter has been on trains and boats and planes and I can pop it into the back of my SUV, to use whenever I need it. It’s been in 15 or 16 countries with me. It’s also fun to ride. My Travel Scoot is so cool that people envious frequently stop me, sometimes even able bodied ones. If you haven’t tried one, and you’re able to use one, give it a go.
Hi, thank you so much for your comment 🙂 I actually have a scooter myself, which I use to go around the town (I can only use crutches for short distances). It is small but not really compact, I can’t get it in and out of my car, for example. Maybe I need to look for a more compact one. You sound like your scooter really helped you get about – it is great that you managed to work so long! In regards to work, I think one of the hardest things for me is fatigue, but I have swapped my days about so hopefully that will help 🙂
Check out TravelScoot, which I use for travel. It weighs only 35 pounds and can fold up like baby stroller. I’ve fit it in boot of a small car. The only negative is that it doesn’t have power in reverse, but you look mobile enough to be able to push yourself back to get out of a lift, etc. It’s made in the UK and sold on-line at: http://www.travelscoot.com. Good luck.
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Jenny it is sooo inspiring to read what you do and how you have adapted things to (hopefully) fit around your MS.
I resigned from my job in a bank Head Office a few years after my daughter was born. The days took too much out of me and my family were more important.
However, I did find it difficult to have no job in my life – particularly when my daughter was at school full time. Two years ago I took the plunge and became self-employed ….. however it is self-employment in the safest of forms as I am ‘attached’ to a FTSE 250 company. When I encountered a big relapse at the beginning of this year, I had to put down my business because everything I tried to plan wasn’t possible. Fatigue prevented me doing anything, planning anything, talking with anyone (and being able to sound at least upbeat about my services).
At the end of April I finally turned a corner (maybe down to the OMS diet?) and was able to pick up my business and get things running again. I truly love doing something that I can do when I feel well enough to do so.
So, even when we try to find another way and it doesn’t work, all is not necessarily lost – I know my business is transforming me IN SPITE of MS!!
Thank you so much for your comment! It’s great that you’ve managed to find a way of working that works for you 🙂 I think finding MY way of working is still a work in progress but I am confident that I will be able to adapt and change if needed when the time comes. It’s really important to me that I am there for my kids, so if I need to re-think work patterns, that’s fine. Adapting is a big part of MS 🙂 x