Did you know that 2.8 million people worldwide have MS (1 in 3,000 people). And globally, approximately one in three of all adults suffer from multiple chronic conditions (MCCs).
“Get well soon or I hope all is well!” Both common things to say to someone who is under the weather, and while the sentiment is coming from the right place, it may not always be the most appropriate thing to say to someone with an illness that they won’t ever get rid of, an illness, injury or disease where your body is the enemy. “Normal illnesses” tend to have a beginning, middle and end that most chronic illnesses don’t have. On the outside, staying home all day every day may look like a vacation and time to relax and have fun. but I’m here to tell you that it is not a vacation, it is a full-time job to look after your health while staying home.
When you have an autoimmune disease like Multiple Sclerosis, your body is fighting itself and there are times that it feels unbearable. In fact, that is one of the most difficult things about having a chronic illness – it’s a forever deal and unless Santa brings a Christmas miracle, your illness will always be with you – there is no end in sight and all you can do is manage through it the best way you know how to.
There are a few other things that I wish people who are healthy understood about living with a chronic health condition. So, to help you see into my world and those like me who fight chronic invisible illnesses daily, I thought I would give you a little peek into my life.
When your abilities change dramatically from one day to the next, you can end up questioning yourself. You know none of this is your fault, but deep down you can’t help but wonder if maybe it is.
In my particular case, there are many times that the physical pain I face isn’t the hardest thing to deal with, while it may be challenging, it isn’t always the hardest to work through. My emotions are all over the board, up and down like a seesaw, there is the guilt associated with thinking that I am a burden to those who love me, causing me to feel like I need to just suck it up and not be such a baby, (even though I know that my family and friends don’t feel that way at all), I still do. There is constant adjusting – adjusting how I sit, adjusting how I stand, adjusting how I sleep, adjusting to the pain, adjusting for new symptoms, adjusting for fatigue levels, adjusting what I eat, adjusting my medications or what activities I can do daily….it is a balancing act of adjusting, adapting and accepting, sometimes I am good at it and sometimes I am not. Dealing with a chronic illness is constant and the strange thing is that every day is the same, but every day is completely different as well. Nothing about MS makes any sense to me and I’ve had it for over 15 years. What does make sense though, is that managing my health has become my new full time job. I regularly feel like my body is failing me or letting me down because it doesn’t seem able to do some of the things I want to do or have been able to manage in the past. Often times I am exhausted from trying to be stronger and more productive than my energy or emotional capacity allows. I know that there are days where I feel suffocated by my limitations and the huge emotions that go along with the realization that so many things are out of my control. How do I fight this self-inflicted emotional browbeating when the root cause of it isn’t going to ever fully leave? What do you do when you know that you don’t have “typical” days anymore? I now explain my days as functioning, semi-functioning or almost impossible, that is the reality of those living with a chronic illness or injury.
I was lucky to be diagnosed quickly, but others are not so lucky, and they sometimes can wait years for a diagnosis and then when they do get a diagnosis many of them are misdiagnosed for whatever reason. Although people can have the same disease, their symptoms can be confusing and varied making it more difficult to diagnose or sometimes you just have a doctor who has no clue what could be happening and is too busy to go down what could be a very long road of diagnosis. I have had a hard time explaining the sensory and cognitive symptoms that I face – arms and legs coated in concrete, or hands that are wrapped in velvet, or trying to explain that you have the feeling of a balled sock in your shoes or loss of feeling causing you to misjudge your footing or that you have fatigue that you just can’t sleep away, fatigue so intense that sometimes its hard to just hold your head up. Or how about trying to explain to a variety of different doctors that your mind is constantly racing or that you have double vision sporadically, while simultaneously feeling like your brain is in the fog and you have a hard time thinking clearly or finding words or multi-tasking, all things that used to be second nature to me. I find that journaling when I can manage it has become my friend because it is difficult to keep track of everything that is going on with my body.
But, after 15 years of living with MS, I have a general idea of how my day will look depending on what challenges I am facing when I wake up – weakness, brain fog, fatigue, itchiness, balance issues, vertigo, heavy limbs, spasticity, pins and needles to name a few. MS affects what I can get done in a day, so I adjust my schedule depending on the intensity of these symptoms and others which I experience daily on varying levels. One day I am fully capable of a task while the next day I struggle with generally simple things like brushing my teeth, doing my hair or making dinner. I am constantly learning to manage my energy levels. I frequently check in with my body to assess how much energy I have to spare on a project or task. Many days I function at an energy deficit whether it be from lack of good sleep or because I have had too much on my plate recently and I know that it’s about as good as it is going to get that day and I have learned to be ok with that. Like I said, it’s a constant balancing act. One thing that has been a benefit of the recent Covid restrictions has been that there are very few errands to run if any at all. If I can get it delivered or utilize curb side pickup, that is what I do and will likely continue to utilize once the pandemic restrictions have been lifted. If I have to go out for some reason, I know that I need to build in some extra time because most tasks take me longer to complete than ever before which ends up making me question myself and my abilities because those abilities can change day to day or hour to hour. Having MS means you live with the unknown. I find it hard to plan when I have no idea how I will feel at any given moment and it’s sometimes difficult to keep from feeling defeated. It often feels like I live my life around doctor’s appointments, alarms for taking my medications, pain management, stretching time, meditation time, meal prep, etc. There are days I wake up feeling like I have run a marathon just from sleeping.
And then just like that, the bad days turn into good days where I am able to focus on all of the positives that have come since my diagnosis over 15 years ago. And as I am learning to manage my illness, those days are happening more often than the bad days. On the good days, I am able to not live my life full of fear or guilt and just live in the present joyfully. On the good days, I can push through the day easier enjoying it and accepting whatever it may bring, laughing and smiling authentically, not pretending that everything is ok, because everything is actually ok. On the good days, I feel strong and happiness comes naturally and those are the days where I feel like I’ve got this and those are the days that help me get through the bad days that will be here at some point.
I like to look for the silver linings in my disease and I know that every day may not be good, but there is definitely good in every day and that is one of those silver linings that I and others with chronic illness likely cling to. I am more aware, more compassionate towards others, more grateful for my health, more humble and more in tune with my body. I am strong and I’ve got this, and I would like to encourage others with chronic illnesses to lean into your support systems, don’t be afraid to ask for help when you need it and don’t be afraid to try something even if at first you don’t succeed, you’ve got this too.
This is my life with a chronic illness. I’d love to hear about yours