For those of you who have been following my story you may see that I focus on the positives. I try to approach my condition with what I call mindful acceptance. I have this condition, I can’t cure it, so I accept it for what it is, allow myself to experience my symptoms, acknowledge they are there, and work my hardest to improve myself as I always have. My MS is comparatively mild to what others experience, and no two people are the same. This is my experience, and like everyone I have my bad days and I wanted to share with you what that looks like.
First, there are the symptoms. When I wake up it’s usually my symptoms that have woken me up; my right arm feels uncomfortably numb to the point that it hurts. I roll over to get more comfortable but it only makes the sensations stronger, I feel it down my right hip and into my thigh. I try not to focus on it, but now another symptom has reminded me of its presence; a deafening ringing in my right ear. The damage in my brain has impacted that area so I have some deafness on that side but that deafness doesn’t turn down the volume on this ringing. As it fills my head, as my arm and leg feel numb and hurt, as I sigh because I am so desperately tired I hear my 19 month old son stir. I squeeze my eyes closed tighter hoping it will somehow make him fall back asleep but it doesn’t take long for his early morning singing to turn into calls for mum.
I get up. Slowly. The floor feels different under my right foot than it does to my left. My arm feels heavy. I walk to Max’s room and he’s got a smile that only makes me feel guilty. I lift him up, lifting more with my left arm than my right, afraid I will drop him. I’m so tired. I lay on the floor next to him, barely able to stay awake as he plays, but he wants me to play with him. He cries. I can’t move. He brings books to me to read but I can barely hold them open. I can’t keep the tears back, but I also can’t seem to stay awake. The ringing reminds me that it’s there. Max cries again.
When I feel like I can summon enough energy to stand, I go with Max into the kitchen to make his breakfast. As he eats in his high chair I have to sit on the floor, my legs feel too weak to hold me. I try my best to play with him before we walk to day care, trying to give him as much of me as I can. After I drop him off I stumbled down the stairs as my right leg doesn’t keep up with what my left leg is doing. I walk home much slower than I walked there. Before Covid-19 I would fall asleep on the train commuting to work, get into my office and collapse on the floor. Now, I get home and slump onto the couch, looking around the room – breakfast is still on the table, books are still on the floor, messages are coming from work, and I feel overwhelming guilt that I can’t be the mum I thought I would be. The ringing gets louder.
Fast-forward to the end of the day and I have to sit on the floor while I cook dinner, or if David is cooking I lay on the floor next to Max unable to play with him outside, unable to hold books open to read them. Tears well up, my arm is heavy, the ringing won’t stop.
Sometimes I feel something new, some sensation that makes me worry – is this a relapse? Is this a new symptom? Am I getting worse? On my bad days these spiralling thoughts are hard to stop. I feel like I’m sliding into disability, that my body is betraying me, that my mind is failing me. On those really bad days I feel guilty about my relationship with David, I wasn’t sick when we got together so it feels like I’m a burden, that it’s unfair on him to deal with this. I feel guilty about how little I can do for Max on those days, how little I can do for me. I start to feel that it’s all pointless, that I should give in, that I can’t beat it so why try? Staying fit is hard, eating healthy is hard, finding time to meditate is hard, it would just be easier to give up.
I don’t give up. But boy, on some days I get close.
It may take the face of eating poorly that day, or not exercising, or not investing the energy to get my thinking out of that negative spiral quicker. I know I am playing a longer game and that bumps in the road are to be expected so I keep trying. I let myself have those down moments, I let myself experience them for what they are and I try to use that as a way to acknowledge my situation and more importantly as a reminder of what I do have to overcome to be better.
These bad days are my jumping off point. My reminder that I am in a tough situation, and that not coping some days is normal, but that getting myself back on track is the best way forward. Whether you have a chronic condition or not, we’ve all had these bad days. We have an arsenal of tools available to us to help during these times. We can seek the support of friends and family, of psychologists, of anonymous forums. We can learn about cognitive behaviour therapy, about the importance of meditation, of caring for our minds and bodies and how we can incorporate those practices into our lives. It doesn’t make it easy, but it makes those bumps in the road less like deep ravines and more like little potholes. It takes practice, it takes persistence, and it takes appreciation that these days will happen from time to time. We can still turn them into something better, something more, something positive, and I think we should keep trying.
And the ears keep on ringing.