Jenny It’s 2021?! Just writing it down makes me feel like I have fast-forwarded to the future, I still occasionally think of it being the ’90s! I’ll tell you what, over the past year especially, I have started to feel old. I turn 43 this year (though I still feel like I am in my early 20s). I am tired. And I don’t mean just MS tired – the bone-crushing hangover with flu feeling that follows me using my body too much (in other words, living like a ‘normal’ person without a chronic illness) – I mean mentally exhausted and spent.
2020 was hard. I’m sure everyone will agree with me on that one. There is the obvious C-word that shall not be named and, for me, marriage separation and worsening health, due to my secondary progressive multiple sclerosis, to deal with also. All the time at home has really given me the time to just be in my own head – sometimes it is ok, other times… not so much.
An Intention for 2021
With every year that passes – and the more that my life changes – I’ve started looking to the future with a sense of anxiousness, rather than the excitement of potential new experiences and opportunities that I used to have. I have decided, therefore, that I need to set an intention for 2021:
ACCEPT & ASPIRE
Accept… my limitations with MS.
I struggle with walking, I tire easily, I need things and people to help me with everyday activities such as showering and shopping and I forget my words so often that my Alexa announcements tend to sound something like this:
“Alexa announce….. Ava, don’t forget to…..um…”
Aspire…. to continue to use aids, help from friends and strategies to help my MS
Shower benches, crutches, rollators, mobility scooters, wheelchairs, automatic rather than manual cars… all help me to be as independent as possible at a time when my body is saying “No! I can’t do this”. Sudoku, Boggle, scrabble – the word games on my phone help me to work on my word-finding problems and perhaps it is time for me to take my own advice and follow more of the activities and strategies that I laid out in my post about word-finding?
In 2020, especially with the ‘C-word’, I had to rely on friends and family a lot for everyday tasks such as shopping. I still feel very guilty about it but I’m getting better. I aspire to continue doing what I have to in order to live my best life with MS, even if this means making phone calls to adult social services to ask for extra support if I need it.
Accept.. that I can’t exercise like I used to
I used to run, do aerobics, classes at the gym… now I can only do low to the ground yoga and gentle exercises. It is a big change and I can’t say that I don’t feel down when I know that others’ new year’s plans are to run a marathon. But, at least I can do something. My body still works albeit differently and I need to accept that.
Aspire… to stick to the exercise routine I established in 2020
One of the biggest things that I embraced in 2020 was The MS Gym. This is a paid-for service with a trainer who specialises in MS – I signed up after a trial and don’t regret it. It costs me the same per month as a local gym subscription would and I can carry out the exercises in the comfiness of my own home. No doubt that the exercises sometimes really challenge me but I am trying to keep going and to slowly move through the exercises, repeating as needed, to keep my body working. Ok, I can’t move as I used to but I can aspire for it to be the best it can be at this stage of my MS.
Accept… that I don’t always stick to my eating plan as strictly as I once did
And not beat myself up about it! I still largely follow the Overcoming MS Recovery Plan but sometimes I struggle because of the difficulty I sometimes have to buy the ingredients and cater for both myself and the children (who unfortunately are old enough to decide that they don’t want to follow it completely). I have decided to accept the fact that I may have a lovely piece of blue cheese with a glass of red wine, really enjoy and get back onto OMS the next day. 🙂
Aspire… to find even more healthy, easy to make recipes and to bulk cook them
I already have a few recipes (see this post) that I fall back on that follow the OMS recommendations of low saturated fat and dairy-free. I just need more! So I aspire to find new, tasty recipes that I could perhaps encourage the kids to help me make as part of their chores for pocket money?!
Read:Category: Healthy Eating with MS
Accept… that I am not the parent that I thought I’d be
When I was pregnant with my kids I imagined myself being a physically active parent – taking them out on walks, camping, exploring… But the reality is that with my secondary progressive MS I can’t. And no matter how much wishing things were different is going to change that.
Aspire… to be the best parent I can be
Instead, I rely so much more on making home life enjoyable for them. I encourage playing games, baking, drawing. As the kids get older though (they’re 13 and 10) they are much happier ‘getting on with their own thing’. But I know that one thing that I am particularly good at is listening and talking to them. They know that I am always there for them, they see me every day and, even though they spend less time with me as they have their own interests, they have that confidence that I am available.
Accept… that I can’t work as I used to and that I need to place limits on myself
I am a speech and language therapist and, after having my children, I worked for 3 full days a week, leaving at 7:45 am and often not returning home until after 6 pm. I realised a few years ago now that this just wasn’t doable. Now, I work independently from my own home, doing much fewer hours. I accept the fact that the trade-off is that I have a lot less money but more control over my MS as a result.
Aspire… to do as well as I can and embrace the alternatives
Working from home allows me to do the hours that suit me. One of the things that I have to aspire to is to impose limits on the number of clients that I take on so that I don’t do too much. It is tempting to help as many kiddies as I can, but I can’t forget that I need to consider my health first. Embracing alternatives such as teletherapy can help.
Accept… that life doesn’t always work out as intended
I had my first MS relapse (optic neuritis) 30 years ago this year when I was thirteen. 30 years!! It is easy over the years to envision what you want life to be like and what you think it will be, from the choices you make. But when you add chronic illness to the mix – along with decisions made by others that then impact on you – there are going to be aspects that veer wildly from the path you had planned. For me, this is the aspect that is hardest to accept.
Aspire… to remember that I am strong and worthy
Ok, life hasn’t worked out as I thought, but I aspire to make it the best I can. What is the alternative really? I like to think that, because my life has thrown me lots of curveballs, I am stronger mentally as a result. I am not going to stand back if things aren’t right for me and I am going to make choices that will help me in the long run. Does that mean that I won’t have really downtimes? No, but I can try my hardest to keep going. As Dumbledore said in Harry Potter. “It’s our choices that show what we truly are, far more than our abilities.”
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Wishing everyone reading so much health and happiness in 2021.
Love and light
2020 was like a nightmare for people all around the world, especially for those who have MS. Stiffen up, do whatever it takes to achieve a better year of 2021. Your friends and family will always stay by your side.
Thanks so much Mario 🙂