Today, as I’m fumbling along trying to get 1 simple task completed (which by the way is a plan I have adopted recently…….1 task to completion per day and I can consider the day a success), anyway, while fumbling along today, I decided that the time was right to reflect on what I have learned while managing my Multiple Sclerosis these past 16 years instead of getting frustrated with what I can’t do today. In other words, I’m needing to turn lemons to lemonade. Even saying it has been 16 years is unbelievable because there are days that I can fool myself and others into thinking that I don’t even have a chronic illness, while other days I feel like I have faced this challenge my whole life and I can’t hide it from anyone, including strangers I meet on the street.  It is my hope that maybe this post will help someone who is newly diagnosed or who needs a gentle reminder to stop and celebrate (or recognize) all they have learned traveling down their Chronic Illness Road.

I’d like to think my klutziness on the basketball court in high school was because of Multiple Sclerosis, but it’s more likely that I just sucked at it! Which is the first thing I have learned on my journey, and that is that not everything that is going on with me is because of my disease, sometimes I just suck at something.  When you have a progressive disease like Multiple Sclerosis, it’s sometimes easy to blame your issues on the disease but I caution you to not do that. It’s important to cross off other possible causes before you chalk it up to being another effect of your disease, particularly when it is something new to you.  This was lesson #1

2021 was a bit of a struggle for me as I found out that in addition to my MS, I could now add Osteoarthritis in my knees, shoulder and hand to the mix. I mean the diagnosis was welcomed in the sense that I knew why I was having such random and acute pain. I just remember thinking ‘what the actual F&^%, so I allowed myself to feel sorry for me for a little while before putting it into perspective realizing that even with these issues my life is rich and full of more joy than I think I deserve. So, in the big scheme of things, it’s an annoyance rather than a really big deal. Don’t get me wrong, I still get frustrated (like today), but I know how lucky I actually am to have the issues that I have and not some of the other issues and challenges that other people are facing.  Lesson # 2.

I didn’t usually think of myself as strong, determined yes, but not strong. However as I’ve gotten older, I think back to the challenges my brothers and I faced growing up and I can give myself a little more grace regarding my inner strength. I feel like it was prepping me for the challenges I was soon to face with my Multiple Sclerosis, and I now know that strength is one of my greatest qualities.  I have learned that to live day in & day out with an unpredictable disease such as MS and not knowing if today may be my last day walking unassisted or the last day I can cut up my own food, you have to be strong or at least have an inner courage that allows you to live with a sense of urgency. At times it is easier to give in and let fear of the unknown and daily challenges rule my life; but it takes an enormous amount of strength, courage and faith to challenge yourself while living with the unknown each day. This is Lesson # 3

I will be honest, before I was diagnosed with a chronic illness, I never gave much thought to mental health – mine or anyone else’s (which I am ashamed to say now as I realize the struggles are mighty and difficult to navigate through).  Fast forward to present day and I realize that taking care of my mental health is more important than ever, in fact, I have a lot of years to make up for not acknowledging or recognizing that my mental health needed some love and attention.  I now know how vital nurturing mental health is when living with a chronic disease like MS. Over the years I have learned that it’s not selfish to practice self-care.  I now take time for me and yes, it was hard to think of it as a necessity instead of a frivolous indulgence. I recognize that my mood not only affects my ability to deal with pain, fatigue and the over stimulation that plagues many people with MS including me, but when I don’t look after my own mental health, it has a ripple effect on those I love.  I am cranky, short tempered and just a real b*&ch to be around, which is not who I want to be. When you are so incredibly fatigued, in pain daily, struggling to use a fork and knife, button up your shirt or just need help getting out of the car, it isn’t easy, but I try to make it a daily priority. I start each day with a fresh new slate and am prepared to write my own life story, not to let my disease write it for me.  So, find whatever you need to do for yourself.  Personally, I stretch, I meditate, I golf, I listen to podcasts, I work on my blog, I hug my grandkids, get my hair and nails done, and sometimes I even allow myself to wallow in self-pity (I think its important to acknowledge the weight that having a chronic illness can put on your life, I just try not to wallow there long). This is lesson # 4.

Before my diagnosis, I was working 10-12 hours a day and often 7 days a week, moving at 100 miles an hour. I literally had to pencil in a sick day – in fact, being busy was like a badge of honour to me. If you weren’t working yourself to the bone, I thought you must be lazy or at the very least unmotivated. It was tough because I had a career I loved but that all changed when my MS took me out of the game and I was no longer able to work those hours or even keep up with the basics of my job. I needed frequent daily naps or “recharging time” as I called it and since I rarely took a lunch break and even less often took my coffee breaks, I figured that was my opportunity to take a break throughout the day. However, I didn’t acknowledge what it really was, which was extreme fatigue. I had a yoga mat in my office, I would shut the door, turn the lights off and asked the front office ladies to hold my calls so I could lay down on the floor and try to get a nap in but it didn’t help.  The kind of fatigue that comes with a chronic illness can’t be “napped” away, it’s a much bigger problem than that and I was falling further and further down the rabbit hole of ignoring my disease and it was catching up with me quickly. So now, I am forced to do things very differently. Learning how to pace myself and keep from over committing is still hard – FOMO (Fear of Missing Out) is a real thing for me, and even though I am more aware, I still have trouble pacing myself. On good days, I can still overdo it and pay for it for a few days by having to chill on the couch with my feet up and watching Netflix.  I try to keep myself at a consistent 5 out of 10 on the exertion scale which is where my body is the happiest and requires the least recovery time. My physiotherapist also says that with Osteoarthritis they like to keep people at a pain level of no more than 6 out of 10, so that is my daily goal. It requires some self-awareness and practice but is my new normal now and I am working hard to keep myself in check. This was lesson # 5

There is power in movement.  In fact, during my last appointment with my Neurologist, we were talking about some of the new challenges I have with both my MS and the addition of osteoarthritis, and she told me that my new retirement goal was to be moving at least 5 days a week.  So, golf 2 or 3 times a week and swim or walk the other 2, which may not seem hard for the average person, but for someone who struggles to walk in a straight line or who needs support when stepping over a curb, it is a tough goal to attain and I rarely meet it. However, giving me a “job” to do, is aways motivating for me so I am working on it. Educating myself and knowing that it is indeed possible to move when you are in pain, has been eye opening for me.  I may not be able to move my body in the ways I want, but it’s encouraging to know that as long as I am moving, I am making steps forward. Listening to my body is important and I am feeling stronger for it. This is lesson #6

I realize that my life is a long way from being over – and I know this may sound a little dramatic especially to people who don’t have a chronic illness. I had a career I loved and was good at, I had (and still have) an amazing family and my friends were and still are) super supportive, but here’s the thing, I thought I was living the life I was meant to live and then suddenly I was forced to adjust. I was hit over the head with a diagnosis of a disease I had never even heard of and was left with a lot of questions about where my future was headed, what would it look like, what could I do or not do, will my friends and family still love me, will I be a burden to my husband, what did I do to deserve this?  I now know that having MS doesn’t mean my life is over, in fact, it has been a blessing to me (not always because that would be a lie) but it has allowed me to pause and to re-evaluate what I want, who I want to be, what I want to do and who I want to do it with and I don’t think I would have done that if I didn’t have MS to force me to stop and take a good hard look at my life. The people who loved me still love me, I can still do things I love (not all of them but I’ve also found new things I love to do), I will not allow MS to define me, I am still writing my own life story and am directing the narrative and will continue to do it until I can’t do it anymore. This is lesson # 7

Before I was diagnosed with MS, I didn’t know anything about having a chronic illness or how one would affect my body and mind. But, MS came into my life when I needed it and it has taught me so much in addition to adding value and depth to my already bountiful life. I am fortunate and blessed with where my life has taken me and with who is in my life and can honestly say that I wouldn’t want it any other way. I have the life I have always wanted. This is lesson # 8

Now, who’s ready for some yummy Zesty Lemon Loaf, I sure know I am!

What are some things that you have learned from living with your own chronic illness or what has someone taught you about their illness? I’d love to hear from you in the comments!