My heart has been heavy these past couple days. I’m not sad, nor am I depressed; my heart is just heavy. I have a great many things on my mind.
I spend a lot of time in my own mind. Maybe it’s because I have quite a few things to sort through on a daily basis. Yesterday I went for a swim. It felt alright, but after I got out of the pool, I just felt so weak. Like, raising my arm to rest on my steering wheel took a little bit of effort, and bending my fingers to grab the steering wheel took a little bit more effort. This was not fatigue as in, “Wow, I can’t even feel my arms I worked so hard.” It was more of a weakness, like I didn’t even want to move. So, yes, I exercised, but I left feeling frustrated that my body couldn’t do what it used to do. I left feeling frustrated that my muscles felt weak. I’ve heard a lot of stories from people that weight lifting helps people with MS to build strength and keep up muscle functioning. Those of you who know me know that I’m not a huge fan of weight lifting. I’d rather swim. But yesterday, something in me snapped. That feeling of weakness is not something I want to experience again. So, I’ve decided to try out some weights. Maybe it will help that go away.
Last night I couldn’t sleep. I had this pain in my left leg that would come and go, but it hadn’t stopped for a couple hours. It’s almost like that feeling that you need to stretch, but no matter what I did to stretch it out, it just kept coming. So, I knew it wasn’t a muscle pain. It felt like more of a nerve pain. It was preventing me from sleeping, so I got up, took a couple of Aleve pills with a sleep aid, hoping it would help. But, not before I was looking up statistics about MS. I know, probably not my brightest moment… One stat said that 50% of people who are diagnosed with relapsing-remitting MS develop secondary-progressive MS within a decade of initial diagnosis (2014). A crippling fear consumed me for a moment as I thought about that happening in my 32nd year. I pushed it out of my mind, and fell asleep thanks to the Aleve. When I woke up this morning, the pain was gone.
My last A1c was 8.8. Yeah, not stellar. Believe me, I know. A good number for that lab value is around a 7. So, there was another thing that I was failing at. Despite what that lab value says, I try and take care of my diabetes as best as I can while living a life I want to live. But, it’s obviously not good enough. So, I’ve decided I think I’m going to try a continuous glucose monitor (CGM). For those of you who don’t know, a CGM is a little device that measures my blood sugars about every 5 seconds from my interstitial fluid. It functions a lot like my pump site. I inject the catheter, and I change it out every six days. I have been so reluctant to get a CGM because I don’t want something else on me 24/7. But I am so sick of failing myself. I am so sick of not getting it right. I’m also sick of those looks that doctors give me when they hear what my A1c is.
I am trying to take some new steps in life. I’m trying to be an example of what I preach to my patients every day. But, it’s hard. This new stuff takes a lot of will and a lot of courage. With all that I’ve thought a lot about my past relationships with people and I noticed that I tell very few people what really goes on in my head regarding the diseases. Not many understand, so I’ve kept it to myself. So, I battle many of these thoughts alone. Which is why I am sitting down on my couch, drinking a cup of coffee, writing this blog. There are few people who I’ve confided in about this stuff. And I miss those people. Either we don’t talk anymore, or we’ve grown apart. Sometimes I’m angry that they aren’t there. Sometimes I stare at my phone wondering if I should call, or wondering if I’ll ever receive a call. Do you ever just miss someone you used to talk to? That you used to rely on? That you felt you could discuss your fears and your trepidation with? I do. I wish some of those people really tried to grow with me as I dealt with this MS diagnosis. I wish I could’ve talked through it more, cried with somebody about it while I was battling my depressive feelings. I wish I didn’t sit there with so many people, and tell them that “I’m fine, thanks”, out of habit. What happened to swallowing our pride and being there for each other during dark times? But sometimes those people aren’t there. Sometimes those people just aren’t there for you no matter how much you wish they were.
But I am not done fighting. Whether those people are there or not, I will continue to make efforts to better myself. And to the few who have stepped up, you are one of a kind. Don’t lose that part of your character. I know I’ve never been truly alone. God is there for me every step of the way. He wants to hear my fears, He wants to catch my tears. I always have my faith in God to back me, even if I’ve lost faith with other people in this world. It’s such a comforting thought to know that God will fight for me when I can’t. There will be a day, probably quite a few days, where I just can’t fight. God will do it for me. He already has. But here’s just a reminder to everyone to be that friend, to be that person.
I’ve spent a lot of time in my head lately, trying to work through some fears, trying to get myself excited about these new changes. So, prayers would be appreciated as I try and take some steps forward. I’m not going to give up, even with MS statistics staring at me in the face, even though my doctors’ disapproving looks remind me that they have no idea what it has taken to fight every day for the past 21 years. But I am going to be that person who gives all the credit to God. He has never failed me; I know He never will.
“The Lord will fight for you; you need only to be still.”
“I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yes this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.”