Jenny Hi everyone, I hope that you are all doing ok? I’m aware that it has been a while since I last posted… I just haven’t seemed to have had the motivation to do so. Life goes on – the kids are now back at school, I am still working for a few hours a week and I am enjoying it being a bit cooler and moving into Autumn here in the UK. Days seem to melt into each other – I can’t believe we are already in September! I am often going to bed at night feeling vaguely pissed off annoyed that I haven’t managed to get all the things done that day that I had planned to in order to feel well with my MS: my exercises, my meditation, eating my green veg…. I’ve known that I wanted to write a blog post for a while but wasn’t sure how to structure it so I had something worthwhile to say – but it has just come to me: motivation!
Motivation
motivation/məʊtɪˈveɪʃ(ə)n/a reason or reasons for acting or behaving in a particular way e.g. “escape can be a strong motivation for travel”
My blog has always been a way for me to get my feelings out about my Multiple Sclerosis and the symptoms that I have to live with day-to-day. A welcome offshoot has been the fact that I have found a community of people from around the world going through the same hardships as I and who understand what it is like to live with chronic illness. Knowing that others understand and might feel less alone after reading my blog is a massive motivation for me to write.
How Can I Maintain the Motivation
to Stay as Healthy as I Can Be?
The thing about motivation is that it is inherently linked to reward; knowing that something beneficial will happen as a result of your actions is what stirs up that motivation in the first place. But what happens if the positive rewards do not materialise?
When my MS started turning progressive I looked into everything that I could do to slow, if not stop, the decline. The fear of worsening, knowing that my walking was getting more difficult, was the motivation that I needed to start looking after myself in ways that I never did before. I researched and changed my diet and supplements and upped my exercise. I started meditating regularly.
The thing about secondary progressive MS (SPMS) is that there is no manual that tells you just how much or how quickly you are going to progress. I remember searching, ‘does SPMS plateau?’ over and over again, trying to find a definitive answer. But I couldn’t find one. My HSCT treatment gave me some hope that, if I could stop the lesions, I could stop the progression. But my neurologist never promised this and, indeed, that hasn’t seemed to be the case.
I am now 3 1/2 years post-HSCT. I changed my lifestyle (diet, meditation, supplements) about 7 or 8 years ago. I gave up a stressful job 4 years ago, allowing me to have more time and space to ‘heal’. I have also been a member of the ‘MS Gym‘ for the past 3 years; it is an online set of exercise programmes run by a specialist in MS that aims to harness the power of neuroplasticity in order to help MSers move more easily and counteract the MS symptoms that they may have. I aim to do this at least 4 times a week and am even in a group with some other MSers where we check in with and support each other with the MS Gym.
How to Keep Motivated,
When You’re Just Not Feeling It
I might be called ‘stubborn’ but I am so reluctant to do this; I ask myself, ‘how much worse could I be if I didn’t eat well/supplement/exercise etc?’ I would say that this is my main reason for continuing; a hope that these actions are helping in some way. Don’t get me wrong, there are definitely days when it all feels futile and hopeless (many days recently); days when I have yet another fall and/or when my feet and legs won’t move at all. On those days, it can be hard to keep going for sure.
Yet, having a health goal and also the motivation to work towards it whilst living with chronic illness can help to give a sense of purpose and direction. The focus is on moving forward rather than back. There are ways that help me to maintain that focus; here’s what I try to do in order to remind myself to keep going, despite frustration:
1. Find Effective Rewards
Some tasks that we do when living with chronic illness might feel onerous; for me, exercising when my body won’t move as I want it to, is an example. At times like these, a reward that is unrelated to the ultimate outcome of the task might be helpful. Promising yourself something like watching a favourite film when you’ve completed your task maybe. For me, things like treating myself to a coffee after my exercises or something frivolous like painting my nails are rewards.
2. Break Your Goal Down into Manageable ‘Chunks’
Breaking down big goals into smaller ones can help you to feel less overwhelmed and more successful with a task. For instance, aiming to eat more healthily may be your overall goal, but a smaller one may be to challenge yourself to create a healthier version of your favourite food.
3. Give Yourself Praise for What You Have Achieved
Sometimes giving yourself a pat on the back for everything that you have already done toward your goal(s) can spur you on to keep going. In regards to my MS and my goal to live as physically well as I can in spite of my diagnosis, the fact I have actively been taking good care of my health for the past 7 or 8 years, makes me immensely proud of myself. I have also taken steps to care for my mental health through medication and meditation. These actions haven’t been for nothing; even if I am physically progressing, at least I have learned how to help my mood during the times that I feel low.
Past and current achievements may benefit you now and in the future, even if that isn’t immediately obvious. Don’t forget to give yourself credit where it is due.
4. Make the Most of Role Models
Search out and remind yourself of people who have the same way of thinking as you do; seeing others working toward their own goals can be great for motivation. I follow others with Progressive MS on platforms such as Instagram and YouTube and, seeing the videos that they share about how they are working hard to stay as healthy as they can be with MS, often leaves me with a renewed motivation to keep going.
Surrounding yourself with people who help you to work toward your aims (my parents and friends often make plant-based meals for me, despite it not being their usual diet, for instance) is also a useful way to keep your motivational momentum going.
5. Don’t Be Afraid to Revise Your Goals Or Try Something New
When you have been working towards a particular aim or goal for a long time, motivation will naturally lessen. I used to be so excited at the start of a new school year, for example; I loved choosing all my stationary, getting organised for the year ahead and the prospect of learning something new. That quickly waned as I got into the actual work, however.
It can help to re-examine how it is that you are looking to achieve your aims. Yoga has always been my go-to to stretch out my muscles but as my MS has progressed I have had to switch from yoga flows to chair yoga or floor-based yin yoga. As a result, I have found methods that still do what I need them to do without becoming frustrated. Most recently, though I am still performing exercises to help my drop foot, I have also admitted that I perhaps need to try something different to try and achieve my goal of improving my walking. As such, I am currently trialling something called a Functional Electrical Stimulation Device (FES) to help. Changing and adapting goals can refresh your level of motivation.
And Finally…
6. Go Easy on Yourself
Living with chronic illness and/or disability is hard. It can be isolating and lonely, exhausting and frustrating. Remember that often people share the best of themselves and their actions on social media; those role models that you identify with are also likely to have down days/weeks/months. Sometimes, we put so much pressure on ourselves to ‘be good despite being sick’ that it can all get a bit too much. I know that I do. I like the idea of being able to keep working and being a great Mum and friend whilst also keeping up with my MS exercise and healthy eating. But, sometimes, something has got to give.
The reality is that other things in life might take priority for a while and that is ok and normal. Likewise, taking some ‘me-time’ to enjoy something that you love may be just the break that you need in order to revise your goals and/or bring back the motivation that you may have felt you lost.
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I’d love to hear about how you maintain motivation to achieve your health goals or to simply keep going, despite living with chronic illness and/or disability.
Till next time,
These are fabulous tips, Jen! I think we can be too hard on ourselves for all sorts of reasons and end up focusing on the things we’ve not done, the things we’ve not achieved or the things that haven’t gone well. We miss the accomplishments, because even the tiniest of achievements should be acknowledged and celebrated. Also, just wanted to say I’m keeping my fingers crossed for the FES – really hoping it can be of some benefit for you lovely!!
Caz xx
Thanks Caz, I am currently testing the FES out and will report back! I still struggle with the day-to-day motivation to do things (i.e. get off the sofa and be productive in some way) and I am in no way perfect in regards to the health goals that I set myself. But thinking about the things that do motivate me can help me get out of a slump! xxx
For the longest time, role models didn’t benefit me because I kept trying to compare myself to them. So and so has had MS longer than me and still does ____. Why can’t I do that? Maybe I’m just not trying hard enough.
It took me awhile to understand that we’re all different and so is our disease course. Now I’m motivated by the different successes……and even the shortfalls of my role models.
I completely agree Ben. I feel frustrated by those that are ‘well’, though I know that isn’t their fault! I think I am most motivated by people who ‘keep going’, despite their disability.
I am one of those who is “well” – for now. I know all too well what it means to be unable to live a normal life due to MS, and I know I can be right back to unwell tomorrow. Why did my MS change in my 50s? I don’t know. I’m not going to argue it. I’ve been where you are now, Jen. Life seems to be a constant of peaks and valleys. Don’t give up.
Thank you Melissa and sorry for my slow response – I have been away. Thank you so much for your words of encouragement x