If you are new to my blog, let me first explain that I was diagnosed with Multiple Sclerosis in 2011. I have a wide range of symptoms that affect my quality of life, but are considered “mild” by medical standards for this condition. Theoretically, I have come to accept and work with the diagnosis. But functionally I still find myself often in denial. I’m still “beating myself up” about not being as functional and useful as healthy people or even some other sick people.
It’s mainly the fatigue that is my problem. MS fatigue is not just an occasional day of feeling a little tired. It’s an unrelenting exhaustion. Sometimes it improves a bit, and sometimes it completely takes over and forces me to go to bed. But it never goes away. “The car technically works, but there’s never any gas in the tank.” Add regular insomnia to the mix and that results in even more fatigue and cognitive struggles. There are times when I have to accomplish something and just push through. It’s a matter of priorities – picking which battle to fight. Pushing through results in pain, headaches, and significantly increased fatigue, often for days afterwards. This is often referred to as a kind of “hangover effect.” It is just part of the reality of living with chronic illness.
More recently I have also developed vision problems, which can affect my daily functionality and even make driving impossible at times. It is yet another symptom that increases my fatigue because my eyes are working extra hard to focus. Fatigue also causes blurriness and more vision problems, so it’s really a viscous cycle. Not being able to just go out and run errands is incredibly frustrating. Safety matters to me. I don’t want to be in an accident, and I especially don’t want to hurt anyone else on the road. So I only drive when I am confident that I can do so safely. Even that is limited to no more than 20 minutes each way because anything longer will increase my fatigue, potentially making the drive home unsafe. I know many people (even those who don’t have MS) who have no issue with driving while on heavy medications or dealing with any number of other concerns that make their driving erratic and potentially unsafe. They don’t understand why I refuse to drive sometimes, and it often makes me feel very guilty. They are out “living life” while I am stuck at home.
And now for the “Chronic Illness Cat” memes...
When you actually consider my physical struggles, it’s really no wonder that I don’t accomplish much most days. Sure, occasionally I actually get the floors vacuumed, the kitchen cleaned, and maybe even the bathroom cleaned or dinner made. But a day with that much activity can result in several “hangover effect” days because of how much it takes out of me.
Reading how little I actually accomplish on my best day must make any healthy person think of me as terribly pathetic. And that’s very much how I feel. Pathetic. Useless. My husband works long, exhausting hours to provide for us, to cover my extra health and nutrition needs, etc, in addition to major ongoing home renovations, cleaning the house and cooking when I cannot, and to driving me to sometimes long distance medical appointments. He’s a trooper. He makes so many sacrifices for me. What do I do for him or anyone else? NOT MUCH. And it weighs very heavily on me.
I have noticed recently that this tends to be magnified by my (admittedly limited) interaction with healthy people. A friend has been driving far out of her way to pick me up and take me to weekly church group meetings, even though the meetings are only about two minutes from her home. Yet another amazing, giving person willing to sacrifice for me while I have nothing to give back to her. Sitting and talking with others in the group, I am aware of the stark contrast between my little boring, teeny, tiny world, and the interesting, hectic, active lives of everyone else in the group. Don’t get me wrong: they are incredibly kind towards me and don’t do or say anything to make me feel bad. It’s just the reality of the situation. I’m acutely aware of how very different I am from everyone else.
But then, every once in a while, I come face to face with the reality of what’s happening to my body. I see a copy of my most recent brain MRI, or my legs and vision suddenly give out at the same time, etc. And I’m transported back to that same feeling of shock that I had at the moment of diagnosis. It suddenly becomes sickeningly real again. I don’t spend time thinking about what this condition will likely do to me down the road. It’s not advisable to obsess about such things. But perhaps I tend to veer to far in the opposite direction, convincing myself that I don’t even have MS. Maybe I don’t really believe that I do have it. I think I’ve created this bubble of denial around myself to keep going forward each day. A diagnosis like mine is devastating because it means you have to let go of all your hopes and dreams for the future. The future instead becomes a scary “unknown” that promises a gradual, and potentially at some point, exponential increase in debilitating symptoms. I suppose that the “one day at a time” focus that is required can create a kind of tunnel vision (no pun intended), where the big picture can be obscured.
I have a friend who had a stroke a couple of years ago and we recently discovered that our struggles in this regard are similar in some ways. Although his recovery was impressive and fast, he has found that there are long term effects that he wasn’t prepared for. One of the biggest ones is that he has to slow down and sleep a lot more. He’d been beating himself up about this as well, without even realizing it. But then he got to see a follow-up scan of the big hole left in his brain from the stroke. It was a sobering reminder as to why he doesn’t feel the way he did before the stroke. Part of his brain is gone now and will never come back. I think his wife is understandably tired of hearing him talk about the scan results so much, but I also understand why he needs to focus on it for a while. It’s a reminder that this is his new normal and it’s OK.
So, here I am nearly five years after my diagnosis, and I’m still trying to find a balance and a way to move forward productively. Certainly I’m not in that raw dizzying state of shock that happens for the first several months immediately following diagnosis. But perhaps I haven’t come as far as I thought.
Thank the Lord that this is all in His hands. I was recently encouraged by an audio book I was listening to, in which the author spent some time focusing on how God thought of him and loved him even before the foundation of the world. What an amazing reminder. God loved ME before the very foundation of the world. He had me in His plans even before He began this grand history of creation. I am so very small, and I so often feel pointless, like nothing more than a burden on society and especially on my husband. But God doesn’t see me that way. And it’s HIS opinion that ultimately matters. So, I thank Him and praise Him for making me and placing me right here in this circumstance. And I pray that He will use me for His glory. The Bible is filled with examples of the Lord using small, weak, fallen people to accomplish His mighty purposes. This too gives me great hope. Less of me, and more of Him!