Yesterday I made the trek out to the mailbox. We live in a townhome community, so all the mailboxes are in groups that line the street. It isn’t a long walk for me, but it is one I seldom make unless I have to be out anyway. My husband likes to get the mail, and, since he drives right by it when he comes home from work, I usually just leave it there for him to retrieve. There isn’t often anything in there that is worth going out to get anyway. Yesterday, though, I had to go to the garage to put out the garbage and recycling containers for today’s pickup. My husband has been out of town this week, so I figured I should probably get the mail. I stopped at the recycle bin on my way back to dispose of the unwanted and unneeded papers–real estate agencies wanting our business, roofing and siding companies offering a good deal to replace our roof, etc. I sorted the rest of the mail when I was back inside. The mail goes in three piles. One pile is for my husband. This pile includes conceal and carry magazines, weekly ads for a gun store, anything techie related, and bills I don’t want to look at–usually medical in nature. The second pile is a shred pile. Here goes the myriad of credit card offers we get for our two youngest kids. Why they still come to us we have no idea. One has been married for two years, and the other hasn’t lived with us for three years. Still, everyday we probably get four or five letters addressed to them, trying to entice them to open credit accounts. The third pile is my mail. This pile usually just holds cooking magazines and Kohls advertisements. Occasionally there will be a card from my mom in my pile or some other random letter I wish to read. Yesterday was a day that held one of those random letters.
Let me preface this to say, if you haven’t been super close to me over the last few months, then you have no idea where I am currently in my health journey. It has been a very bumpy road. The surgery I had in June to remove a tumor from my mouth set me back in terms of how I feel. The incision the doctor had to make was much larger and deeper than he had anticipated. It has only been in the last week or so that the wound closed. And, I use the word closed loosely. The nerves he had to cut through to get to the tumor may never regenerate. Essentially this means there is and may never be feeling on the left side inside my mouth. Chewing is difficult because of how the wound “healed”. There is also great risk of burning my mouth because I am unable to feel if something is too hot. Sometimes I will taste blood; it is only then that I am aware that I bit a hole in my cheek as I was eating but did not feel it. Also within the last few months, we have been dealt a plethora of family issues, most of which I Have no idea how to walk through. Whoever said parenting ends when your kid hits adulthood should be rounded up and tried by fire. I thought the preschool years were exhausting. Ha! That exhaustion doesn’t even come close to the exhaustion faced with issues of adult children. Preschool issues are pretty easy–share, eat your veggies, hold mommy’s hand in the store–you get the idea. The issues presented by adult kids are, obviously, adult in nature. So now as parents, we have our own adult issues (medical, work related, aging parents, etc) AND adult issues with our kids because they are now adults! Seriously. More than once I have wished I didn’t love so hard. I know there are parents out there who don’t help their adult kids with their problems. And, just to be clear, we don’t always help either. But when the issues they face are BIG issues, often they turn to us because they just don’t know what to do. Or, sometimes the opposite is true. We know something is wrong but cannot place our finger on what it is. Then, we ask them, and they say nothing is wrong when deep down inside my mom gut, I know they are lying. To round out the big problems of the last few months, my MS, which had been in partial remission for a while, decided to return with a vengeance. It has sent me into a relapse that few know about or understand. This relapse has greatly affected two areas of my daily life–my emotional health and my ability to fight the always present fatigue. In hope of finding SOME relief, I found a new doctor (wasn’t thrilled with my old one at all). After assessing the situation, she decided to change medications, reducing some, increasing others, and adding new ones. That sent my body into a state of waving the white flag in surrender. So many mornings I would wake up with my husband as normal. Then, after he left for work, I would find myself back in bed, unable to keep my head up or my eyes open. Work became a major chore instead of something I looked forward to. More than once I told my husband that my level of fatigue could only be described as bone tired. In other words, I was so exhausted, so spent, that the feeling of fatigue penetrated deep into the bones of my body. To make sure my point is made, this is NOT the kind of fatigue that normal people experience. That kind of tiredness is relieved with a good night’s sleep or a nap. MS fatigue is very different. It is debilitating fatigue. Because of this inability to really DO anything, my house is a mess. I see it; I just can’t do anything about it. One day I cleaned the bathroom sink. The output of energy that took wiped me out for the rest of the day. With that level of fatigue, my emotions are all over the place. Our body parts are all intertwined. When one is not working right, it automatically means something else has to be overworked to pick up the slack. My problem the last few months has been that there is no other body part that is able to compensate for the loss of others. Oh, and add summer to the list of factors that have driven me to this state. MS and heat do not play well together. Enough said about that.
Back to my letter in yesterday’s mail. One envelope had my name on it, and a too familiar looking symbol in orange. It was my new membership card from the MS society. You know how some credit cards list the year you became a cardholder? The MS Society membership cards list the year of enrolling. I looked at my new card, and in the bottom left side was written, “Member since 2013.” Four years. Four years of dealing with issues related to MS. This wasn’t exactly a club people were clammering to get into. People proudly display the number of years they have been at the same company, or their membership card to an elite country club. But the MS Society? To be a member of this club means one has a disease for which there is no cure. It means one has a disease that has the power to take a life. My qualification that allows me to hold a membership card to this club is not one I asked for. I didn’t pledge to be part of it so I could do all the fun things that come along with being a cardholder. No, instead I am a cardholder because I can relate to the debilitating fatigue, the painful muscle spasms, the nerve pain that feels like my hands and feet are always asleep, the vertigo that often makes me feel like I am on an amusement park ride that won’t stop, the inability to swallow, or, upon swallowing, choking on what just went down, and the lack of ability to come up with words. (I have been sitting here typing for an hour; my hands don’t want to cooperate, and when they do, my brain fog won’t let me find a word I am needing)
This morning I was reading in the book of Psalms. I have spent a great deal of time pouring over the Psalms. I find that I can relate to much of what the authors say. Their brutal honesty is refreshing in a way. Anyway, this morning I was reading random Psalms, and I came across this verse:
“Be merciful to me, Lord, for I am faint; O Lord, heal me, for my bones are in agony.” (Ps. 6:2)
David wrote those words, a plea to his God, thousands of years before. My Bible doesn’t give the circumstances David was experiencing when he penned those words. Perhaps it was one of the many times he had to run from King Saul. Perhaps it was a time that David as King of Israel had lost a battle. Regardless, when I read those words I immediately thought, “David gets it.” If he were alive today, he would understand the deep fatigue that has overtaken my body. I recently explained my fatigue to someone using those same words–“It feels like my bones are tired.”
It doesn’t get easier by the year. Some months it is just more bearable. But easy? Never. It is difficult for me to always be positive. Depression does that to a person. This morning, though, I read something that spoke to me. It was a quote by Ann Voskamp that I came across on Twitter:
“Suffering can be a friend who drives you where you didn’t know you needed to go.”
Do I wish I didn’t have to suffer from this disease and all that goes with it? Yes. Do I hope there is someday a cure found? Yes. Do I often want to give up? Yes. But I haven’t yet. I find it intriguing that Ann Voskamp labeled suffering as a friend. When I think about it, though, it is often true. When one is really suffering, friends are hard to find. When the suffering is one that will most likely last a lifetime, it is the loneliest journey ever taken.