Jenny Can you believe it’s October already?! I really feel that what they say is true – the older you get, the more quickly the time goes. I know that in many places spring is just beginning but, in the UK, my favourite time of year is starting – autumn. I love the cooler temperature, I love the fact that the kids are back in school (sorry kids, but it makes you more settled too!) and I love the excuse for sitting by the fire with hot chocolate.
Many know that I’ve been struggling to get my writing mojo back, so I thought what better way to ignite it by using the writing prompts provided by A Chronic Voice to help structure my thoughts and to give you a bit of an update about where I am at the moment? Thank you so much to Sheryl for giving me the prod I needed to start writing again!
Following on from my previous post, where I questioned where I sit within the blog writing world as someone with advanced multiple sclerosis, I had a load of lovely messages from people saying that they still wanted to read my thoughts and that some of them feel like my experiences make them feel not so alone. Hearing from others makes me feel like I am a valued part of the chronic illness community, so those messages were lovely to receive.
FALLING
I really feel that, since that post, I’ve been FALLING into a real routine to try and keep well, both mentally and physically with my chronic illness. The summer made it tricky as it can be hard for me to put myself first when I have two children to think about. But, now they’re back at school, I can spend my days considering my health more. I still work, seeing children at my home (I’m a speech and language therapist) but I am very selective about the number of children that I see. I know that I can’t see the number of children that I used to when I worked for the NHS and I’m grateful that working independently affords me the opportunity to make that choice. So, day-to-day, the routine I have fallen into usually comprises of getting up with the children to make sure they’re okay for school, trying to get some kind of MS Gym workout in, doing some stretches, seeing a child for my speech therapy and then making the kids tea. More often than not, I don’t manage to do all of these things, but this is what I aim for.
TRANSITIONING
I feel like the season TRANSITIONING from summer to autumn has benefitted my multiple sclerosis symptoms. I love spending time with my children, but I do find it stressful at times when they aren’t at school, trying to keep them entertained and away from their screens. Stress leads me to feel uptight and a bit mentally cluttered which, in turn, seems to make me feel a bit more ‘on the edge’ than usual and my muscles be a bit tighter– which is unhelpful when you have significant spasticity already! The cooler weather as summer has transitioned into autumn also helps my fatigue, as does the opportunity to have a quick catnap before the children are home from school.
On a more personal note, I also feel like I am TRANSITIONING into a stronger, more independent person who is becoming less apologetic about my chronic illness and more open to asking for support when I need it. The longer I live as a single person, the more I have had to set boundaries in regards to what I can and can’t do. Whereas before I used to have someone in my house who shared the load, now it is me on my own. And I’m okay with that – I just need to make sure that I know when to stop before things become too much and I feel overwhelmed by everything that I feel like I need to do. Realistic expectations are the key.
CHOOSING
As I am transitioning into a mentally stronger person, I am also CHOOSING to accept that, although the life that I have now is not what I had envisioned for myself or wanted, it is what I have. I am choosing to try and keep positive and to tell myself that I can do this – I know that I am mentally strong (even if I don’t always feel it) and that am a lovable person, regardless of my MS.
CHOOSING positivity is something that I need to do day in, day out. It isn’t always easy, but I know that sitting around surfing the internet might be fun for a time but, ultimately, it doesn’t make me feel good about myself. I might not be able to work in the same way that I used to but I’m choosing to approach caring for my MS body and mind as my full-time job. Little things, like adding mantras to my phone screen so I see them regularly, placing restrictions on my workload and not beating myself up about serving easy, ‘ready meal’ dinners to the kids a couple of times a week is what I need to do in order to stay well.
IMAGINING
Imagination isn’t something that comes easily to me but, recently, I have been IMAGINING just how different my house would look if I had all the money that I need to fix the bathroom that is falling apart or if I could afford for someone to Marie Kondo the shit out of it. I have so much stuff, I don’t know where (or have the energy) to start! I have all these inspirational Pinterest boards of things that I love but I have neither the energy nor money to achieve them. Even more so, sometimes I allow myself a little time to imagine how it would be if I won the lottery and was able to buy a fully accessible bungalow in my own right. One that is near to where I currently live and I have the say-so on how to decorate it… a girl can dream, right? I suppose I had better start doing the lottery!
BEAUTIFYING
In the meantime, I have been slowly BEAUTIFYING the garden. I am so lucky to have my Mum and Dad to help and my in-laws to provide me with plants and flowers to pretty it up. I get around my garden now by using a walker and it is nice getting outside if the weather is ok. I am not very green-thumbed but I still have some blooming roses which I am keeping on top by deadheading and I have managed to harvest some lavender which I have dried and hope to add to holiday gifts. Now I just need to brainstorm what I can make :).
Thank you as ever to Sheryl from A Chronic Voice for the writing prompts.
Love and light,
Hello Jen – enjoyed reading your interpretation of the October prompts. It’s always so interesting to learn about the lives and challenges of others. I must say that you sound an amazingly strong and brave woman and I’m in awe of you being able to do as much as you describe in this post. I found it took me years to feel ok with not being able to do things like cook from scratch or have a tidy house and garden and used to berate myself constantly for my “failings”. Eventually though, I think most of us spoonies make peace with it even if it’s hard…
Take Care, Sarah x
Hi Sarah, thank you so much for your comment. I can’t always do very much (I’ve just had a week where I don’t seem to have got anything done!) but like you said, I think I’ve made a bit of peace with that. Otherwise, I just feel rubbish! Thank you so much for reading xx
I thought “Falling” was going to be about something else entirely and was glad to see it wasn’t. I also had to look up “treacle”, which I’m proud to say was exactly what I thought it was. Seems like I retained something from those English literature courses.
Hi Jen, I found your blog last month via a comment you left on another and I’m so happy to see that you’re continuing to write and inspire.
The most inspiring part for me was your last sentence under “Transitioning”. “Realistic expectations are the key”.
I can…well, could be spontaneous, but have always liked a schedule. MS doesn’t do spontaneous at all and seems to delight in upsetting plans. Your “realistic expectations” are spot on. My one schedule is now divided into two (at least); things that must happen and things I would like to happen if possible. I still get to feel accomplished when I complete the must happen list and am not dissapointed if the second, possible list doesn’t.
Sounds good, doesn’t it? Please write a post on how you schedule….practically and realistically, (and maintain your sanity), because I seem to fail at it almost daily.
Keep writing. You haven’t lost any mojo, you just have MS and your readers, especially those who have it too, have realistic expectations.
Hi Ben, thank you so much for your comment.
I love your idea of putting your schedule into things that must happen and things that you would like to happen if possible. I think that’s a really good way of looking at it, because I tend to put everything in the ‘must happen’ pile and then feel rubbish that I haven’t got everything done!
in regards to the ‘falling’, I have done plenty of that – I had a fall a couple years ago where I managed to break my collarbone. Ouch! Luckily no really bad one since then, probably because I’m more likely to be using my scooter/wheelchair now.
Thanks so much for reading, I have just checked out your blog and you’re such a great writer! I was reading ‘Give Him a Chair!’ and the grief cycle really resonates with me in terms of what you are saying. I’ve had MS for 28 years now and I am definitely in a mixture of all the stages still!
What an awesome post, Jen. You’ve covered the prompts really well and it’s SO good to read that there are positives right now, even if feels like one step forward and ten back sometimes. I don’t have children but I can see the challenges with them being off school for holidays, so I hope that this time where they’re back for autumn term gives you some of the time and space to focus on yourself a bit more, to keep embracing the routines and doing what you need to do for your own physical and mental wellbeing. “I am TRANSITIONING into a stronger, more independent person who is becoming less apologetic about my chronic illness and more open to asking for support when I need it” < Wooooo, that's my favourite part! 💜💙💚💛
Thanks Caz! Luckily the kids are getting that little bit older that they actually prefer not to do things with me, ha ha! It’s more my own guilt feelings but I should be spending time with them and sorting them out.
Thank you as ever for your comments, I really appreciate you reading Caz xxx