The loneliness of sickness

I consider myself to have an amazing life. I feel so blessed with the best husband I could ask for, good friends and family; support and kindness surrounds me, never lacking in wise counsel and always a friend who I can call if I need comfort.

But even with all that I have to be grateful for, sometimes I feel a a twinge of loneliness in my soul–like I have in recent days.

I know I often like to share wisdom and encourage others, just because it is one of my giftings; but I also have my difficult days too. Those days when I’m just not sure how this health journey I’m on is all going to wind up. My mind starts straying a little too far to the dark side and fear attempts to creep in, like an unwanted enemy in my home, trying to come in and stir up chaos.

I commented to my husband today as it hit me during an emotional phone conversation I was having with him, where I said, the hard thing about dealing with physical issues is that I’m really good about mentally separating myself from emotional pain and being positive. But sometimes, I’m just not sure what to do with the physical pain and hardship! I can’t think it away or talk myself out of it. It’s very real and it’s very tangible. And very hard to deal with. I’m still trying to figure all that out, honestly.

But I did have a revelation about myself this week: that if I can’t trick myself into feeling ok physically, which is obviously impossible,  I can attempt to trick others. All subconsciously, of course. Maybe trick is a bad word, but we’ll go with that for now. If I can convince others that I’m ok and that I feel fine and I’m not physically struggling (even when I may not be feeling great), they treat me just like anyone else and then I am better able to trick my own brain into keeping up appearances. It feels good to pretend sometimes. I want to feel healthy and strong, and be treated as such.

Sounds a little crazy, doesn’t it? But hear me out.

Dealing with sickness is so so hard, on many levels. No one willingly signs up for this. We all want to feel good, and I’m doing everything in my power to do just that. I’m trying hard to lead a fairly normal life with my husband traveling frequently for work right now and 2 kids that I want to spend time with. So it brings a sense of desperation to me when I’m doing all I can within our financial situation to get help that I need, doing countless hours of research on my own, talking with doctors about next steps, trying to take the right supplements and even down to following this very strict AIP (Auto Immune Protocol) diet to help lower inflammation for the last 3 months, and yet, I still don’t feel good lately. Talk about fighting a sense of powerlessness, hopelessness and frustration because I can’t seem to get my own disease under control. It can feel like a lot of pressure.  Yes, I do feel well sometimes depending on the day,  but it hit me today that the last 13 months has been one thing after another as far as MS symptoms go. It’s been a challenging ride for me.

I think the struggle then in processing all of this is how easy it can be to isolate myself in that area and not talk about my difficulties. It can be hard to be honest, with myself and others. I don’t want to feel like I’m being labeled or to have people worry about me since they know I struggle. I want to feel strong. I  also sometimes just don’t want to think about it, and then I can temporarily pretend like it’s not happening. It is just a painful topic accompanied by tears, many times.

And in those moments, I try to carry the burden alone; until it gets too heavy.  It is then, in that place of isolation, that I’m reminded I need to process things more, with God first (which I’m not so bad at) but especially more with others. To let them into my pain, my heartache, my journey. To not try to carry the load alone.

One of the last straws for me today that hit me about my situation was the realization that I’m literally just trying to stay out of a wheelchair. I’m doing everything in my power to fight it.

But on days like today where my legs felt weak when I woke up this morning and began to attempt to walk around, where I could feel numbness and tingling creeping up them again as well as in my hands, I had a scary moment where I wondered if this all is a lost cause. If I really am going to beat this.

What a scary conversation to have in my head. And please don’t tell me that I’m thinking negatively. This is the possible reality that I’m dealing with, and I’m trying to be honest with myself, although I hope and believe that will NOT happen.

The last two times I’ve seen my new neurologist, he was shocked I’m not currently using a cane and that I’m still walking so well. And then, after seeing how my MRI looked from this last spring with 6 new additional lesions added to all the scarring I already have on my brain from precious episodes, he just shook his head and commented in wonder and disbelief, “you just keep bouncing back”. He doesn’t know how. But I do. 🙂

So as you can see, the odds feel stacked against me right now even though I am obviously currently defying them. I shouldn’t be walking as well as I am, if at all, but God is greater. He has the final word on my health. I am grateful that I get around as well as I do. Health is such a gift that is easy to take for granted until you lose it. Don’t ever take it for granted.

I pray I do keep bouncing back. That all the dreams that I have and am currently working on will not be in vain. That I will be able to accomplish all the desires that God has placed in my heart. I still believe in miracles. I have seen too much to not believe. I know he is able and willing. And so, I continue to pray that God will heal me, and I know so many of you pray for me too. It lifts my spirits more than you know.

But at the same time, I am learning to accept where I’m at–to find peace and solace even in this storm I’m in the midst of. To not kick and scream about what I want but to continue to discover that I find God in this brokenness, the brokenness of my body. He reminds me that I don’t need to strive, but to lean into him. His ways are so much higher than mine.

I want to end with this thought: If you know someone that is sick, check on them every once in a while. It can be such a lonely road. It’s not fun to talk about, but the burden needs to be shared. It truly does lighten the load for another.

Thank-you so much for your prayers.

Side note: After much prayer, consideration and urging from my neurologist because of the advancement of my disease, I am trying a medication soon, in addition to all the other things I’m doing. Please pray this is a successful addition to my protocol.