Give Yourself a Break
Living life with a chronic illness like multiple sclerosis can be extremely demanding. For many, trying to live as normal a life as possible can leave them feeling perpetually behind, always struggling to catch up. A life with MS can include many obstacles that can make life challenging and more difficult.
Adjusting expectations to accommodate MS
The expectations of life, particularly during the early stages of the disease, don’t always adjust to accommodate an illness though. Work, family, and even self-care become more and more difficult to keep up with when your body begins to fail you. Too often, we get down on ourselves for not being able to keep up with the lives we’ve lived, leading us to push ourselves harder and harder. I’m here to remind you of something though: it’s OK to give yourself a break.
MS symptoms can disrupt all sorts of plans
By now, you are likely familiar with the myriad symptoms that can present themselves to someone with multiple sclerosis. Fatigue, pain, spasms, cognitive dysfunction, heat intolerance, etc. - the list is filled with ways your body can rebel against your wishes and go on strike to prevent you from accomplishing your daily tasks. Not only are the symptoms wide-ranging, they are usually unpredictable and can strike at a moment’s notice, sidelining you when you least expect it. In short, MS isn’t very good at helping you maintain your plans. Whether you planned to see friends, take a shower, watch your children’s school play, or even just go to work, this disease has a knack for suddenly getting in the way.
Limitations with MS
This illness’s penchant for getting in the way seldom jives with our expectations. Even symptoms that may seem minor can have a knack for interrupting our freedom to do as we please (or worse, what we feel is expected of us). That’s a pretty tough thing to live with. You begin to feel like a prisoner to your own body. In fact, the frustration this creates has led people with MS to happily chime that “they have MS but it doesn’t have them,” regardless of how true that is; they love to exclaim it as sort of a way to fight against the disease, to try to deny it.
It's okay to admit things have changed
To act like the disease doesn’t have a major effect on their everyday lives (and for some that’s true - it was even true for me early on - but time and the disease do tend to march on for many, making that phrase extremely cringeworthy after a while). My take on all of this though, while it isn’t pleasant, is that it’s OK to admit things have changed, it’s OK to admit that sometimes you can’t accomplish what you want or even what you need to do.
The importance of self understanding and self kindness
It’s OK for your incurable disease to get in the way of your life. It isn’t your fault when your body fails. Not everyone is going to be understanding of that; however, YOU need to understand that. Your illness getting in the way of your life is not your fault. You didn’t ask for it, you didn’t do anything to get it, you do not deserve it. You do not have to pretend that everything is normal. It’s OK to go a little easy on yourself, to give yourself a break. Living with MS isn’t easy, it’s okay to occasionally acknowledge that in order to not put too much pressure on yourself. Holding yourself to the standards of other more healthy people or even to your standards pre-diagnosis can set you up for some harsh disappointments in life.
It's not your fault when MS gets in the way
This isn’t a license to stop fighting or to stop trying to meet whatever goals you want, it’s just a reminder to be a little easier on yourself if your body gets in the way of those goals. I say all this because I too need to hear it. I’m pretty hard on myself and on what I accomplish on any given day. No matter how hard I try, there are days when I’m simply too fatigued, or my hands are too numb, or the pain is burning way too much for me to think straight. It’s hard for me to remember that those obstacles are no reflection of my effort and that it isn’t my fault things didn’t go the way I wanted. In reminding you to give yourself a break, I’m hoping I’ll finally understand that as well.
Do you ever feel like your feet and ankles are burning on the inside but cold to the touch?