Jenny I’ve had a bit of a break from social media over the holiday season. I’d love to say that I have used the time to rest and recharge but unfortunately that isn’t the case. The past couple of weeks have been filled with friends, family and, well, booze, so I am feeling the need to refresh and get back into the swing of putting myself, and my health, first. Christmas time is a hard one for us spoonies– I really want to see everyone and so try to say ‘yes’ as much as I can, but I suffer for it the next day (and week…).
This holiday season has been a mixed one – full of joy after seeing my sister and her family for the first time in over 2 years but also sadness as we have had a bereavemeant in the family. Stopping work for the Christmas break seems to have brought my body – which I guess was running on empty – to a stand still. I have had 2 falls (non drink related, I hasten to add!) and my level of fatigue has gone through the roof. And its hard because others think a simple nap will sort it, but what people don’t realise is that I have no choice but to stop and nap – it doesn’t ‘fix’ the fatigue but I literally can’t do anything except stop – my body has has enough. I guess it is like a rechargeable battery; the need to nap comes when the battery is almost empty and the sleep will recharge it, but only to about 15%.
Anyway, sadness, fatigue and falls have really made me stand back and think about what my life is like now, and I am aware that there are some potentially big changes coming up in 2018. For example, I really cannot see myself continuing with my level of work for another year, I am trying my hardest with the adaptations that they put into place, but it feels a bit like putting a plaster on a wound that desperately needs stitches. And what will that mean for me as a person – someone who saw herself as a highly skilled individual to lose this part of her identity? It will take a lot of adjusting I’m sure.
But, despite all of this, I am looking forward to the New Year. I know that when I do stop the level of work that I am currently doing I will be able to really focus on the people that I love (picking my kids up from school more often) and the activities that I enjoy but don’t do very much, due to the energy that work takes up. I’m not one for making New Years resolutions, but, this year, I am making an exception. And I’m not going to focus on what I am not to do; instead, I want to do more:
More school pick ups
More yoga
More date days/nights with my husband
More quality time with the kids
More plant based recipe experiments
More reading
More meditation
More time to just be me
Because this MS malarky makes me feel like I have lost a lot of ‘me’. I can’t do some of the things that I used to love doing anymore (dancing, running, all night parties) but there is a lot that I still can do, I just need to structure my life to make sure that I can fit it all in, while still giving my body the rest and love it needs. So, watch this space! No doubt I will continue to moan about work for a bit longer, but I feel like 2018 will bring in a huge change for me and it is up to me to make the best of it.
Wishing everyone all the best for 2018!
Definitely treat yourself by taking that break (even if it takes forever for that battery to recharge). It’s so hard to listen to our bodies because there’s so much we want to do. Unfortunately, MS slows us down and frustrates us further. It sounds like you have a really solid plan for the new year by adjusting your work to what you know you can do – hopefully that will leave your spoons more full at the end of the day. Love all your goals for 2018 – I have quite a few similar ones myself. Best of luck to you and happy new year!
Thank you so much! Best of luck for 2018 to you too 🙂 xx
Good for you, Jen! Prayers for a successful 2018!
You too Jo Ann! Best wishes for 2018!! X
I know slowing down when we have always been able to do it all is SO hard but I guess there is a time in life we all have to do it. I hope 2018 is great for you and you can step back some or all from work. You already know that I have only been working pretty much part time hours since my flare up and I was planning on going back to full time. I do not like admitting this but I do not think my body can handle it. Heck, working 6 hour days was draining enough! Like you, I do not normally make new years resolutions but I am planning to make some changes this year. I wish you SO much success, strength, comfort and good health!!! Much Love Jen!!!
Thank you so much Alyssa! It can be hard truly listening to our bodies but with MS needs must! And things can change and go up and down too. I hope that you can work out what works best for you. Wishing you loads of love and best wishes for 2018! Xx
Love your list. There just comes a point where you can’t function at everything anymore. Not working was a challenge for me at first filled with fear and dread but my body couldn’t keep up. It has made a huge difference in my life. I couldn’t imagine working now.
That’s what I tell myself Jamie, it will be a huge change but not necessarily a bad one. Hope that you have settled well into your new condo – all the best for 2018! X
And to you. It will be for the best.
I really hope the falls haven’t resulted in any injuries! It can be so frustrating and disheartening even when others just don’t ‘get’ what it’s like when it comes to being ill and coping with fatigue. You’re doing the best you can Jen, and it actually sounds like you’re doing too much saying ‘yes’ to things and struggling afterwards as a result, so I think you should be proud for everything you’ve managed over the holiday season. I can appreciate where you’re coming from with the work side of things. I lost my job this year due to ill health and needing another surgery. I apparently have another op coming up in spring but then after that I need to figure out what to do work-wise and the thought terrifies me because I’m losing that capable, strong person that I once was. The other part of me wants to say that things change, and it’s just a different route to get to where you need to be. You will work through it and learn to accept where you’re at and figure out where to go from here when you’re ready, and the new route you take can be brighter, more manageable and happier in the long run. There I go, blabbering on, sorry! Just want you to know that I think you’re doing brilliantly and have every faith that 2018 can be healthier & happier for you! 🙂
Caz xx
Ah thanks Caz! It’s not blabbering on, I really hope that, like you say, the changes mean something even bigger and better 🙂 We’re still the strong and capable people we always were, maybe just in a different way with a different focus. All the best for 2018! Xxx
I totally know the feeling about the napping. I had an argument with my family because they couldn’t understand why I would need naps on vacation. It’s not just lots of physical effort that makes me need to stop and recharge. They were convinced that I was just napping because I really like napping. They came around but it was a frustrating experience.
Wishing you all the best for a happy and successful 2018.
Thank you! Yes, napping and explaining how we need it but that it doesn’t fix us is hard work sometimes. All the best for 2018! Xx
I completely get it! Accepting I could no longer work was tough. So much of my identity was tied to being an art teacher and I’d worked so hard to lead a successful department that all of a sudden was taken from me. One day I was fine the next I had a massive relapse which left me unfit to work. However, I came out the other side and although I’d rather not be ill I realise I have also gained a lot, such as more time to spend with my son, the chance to look after myself better and a lot less stress! My priorities have changed and now I better appreciate how short life is I would rather not pour everything into a career when there is so much which is more important. I love that you’re focusing on all the things you want to do next year. I’m sure you will find a new purpose and a new path which better suits what you need and you may find new opportunities too! Wishing you all the best for 2018! Xx
Thank you so much Natalie! I have to say that your focus on your little boy helps me so much to appreciate what I also have, sometimes I just worry that I don’t make the most of it! I’m am hoping that the work changes will make a massive difference and it helps me so much to know that others have been through the same, even though it is bittersweet. I wish you and yours all the love and best wishes for 2018. I am sure it will be good to us 🙂 xxx
So sorry to hear about the bereavement and falls Jen. I love your list of what you’d like to to more in 2018. Wishing you lots of luck with it and a happy 2018 for you and your family xx
Thank you so much Hayley! Wishing you and yours a fantastic 2018 🙂 xxx
Happy New Year. I hope it is for you a year of more. May all your more wishes become reality.
Thank you so much Donald! Best wishes to you for 2018 🙂
Oh Jen, what a mixed bag you’ve had!. Glad you’ve had a lovely Christmas and seeing your sister. :). And so sorry to hear of your loss and your falls..hope you’re ok?. And re work…if and when you need to give up work, doors are still open…you can still do whatever you desire..just think about your other dreams..I often think about what I really want and can do, and thank MS as a blessing – otherwise I wouldn’t know what path to follow. :).Wishing you and your family a wonderful 2018.x
Thanks so much Toni and thank you so much for your comment – sorry it has taken me so long to reply. I’m still recovering from Christmas but have had a fab time with my sis so that makes it all worth it 🙂 I’m sure any changes will be positive in the end, I just need to make sure that I remember that! Wishing you all the best for 2018 lovely! Xxx
I love your list of things for 2018 Jen! 🙂 Hope you have a wonderful New Year. 🙂 xxx
Thanks Heather!! Xxx
This time of year seems to bring all sorts of thoughts to the forefront doesn’t it! It is crazy how hard it seems to be for everyone to put our health first doesn’t it. Can’t wait to see more of your blog in 2018, I hope you have a nice new year and don’t stress too much about making big decisions (so much easier said than done!)
Thank you so much for your comment Hannah! I hope that you have a fab new year 🙂 x
So sorry to hear you had a bereavement Jen. Sounds like a tough time. Christmas is exhausting isn’t it! I love your list for 2018 and I wish you all the very best for the year ahead xx
Thanks Emma! I am really exhausted, it has been great in some ways but also difficult. Here’s to the New Year and a new start! Wishing all the best with health and happiness in 2018 xxx
I’ve stopped working, I still struggle but with the bits of energy I have I focus that on the kids and that’s more rewarding for me tbh. Good luck going into 2018! MS is rubbish but writing helps me loads I hope it does you too X X
It definitely does and that is what I focus on – how much stopping or adapting my work will benefit the family. Best wishes to you for 2018! Xx
And the same to you x x
Just loved your post and I am sorry that the year has not been the kindest to you but am always really inspired that you can even still see the silver linings even in the less than ideal circumstances. And hoping that you are feeling OK despite all the falls, I know I have so many sometimes that I even end up with bruises on my bruises!
Sending the warmest of wishes and to thank you for all your support and kind words over the past year. Have a very Happy New Year whatever you are doing this NYE and all the best for 2018!!
Rhiann xxx
Oh thank you so much Rhiann for your lovely comment! I love reading your blogs too and appreciate all the support that you give me. It helps so much to know that others are often dealing with the same things that I am. Wishing you all the best for as happy and healthy a year as possible for 2018. Jen xxx
The work thing gets me. I have so defined myself by work. It’s hard to come to grips with the possibility that I may not work again Still, there are positives and I am trying to focus on them. I am fighting the napping against my husband’s and doctors’ advice. I don’t want to miss a minute of my life.
I completely understand that! I am nervous about the stopping work thing but I am sure it will do us both well. The best of luck! Xx
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