The beast is migraines in my case, though it could be any number of chronic or invisible illnesses that are suffered by others. The beast has been with me nearly every day over the last few years. It is always lurking, waiting to strike. Sometimes without warning. It presents a burden in a couple of ways.
Migraine is a burden on every day life. Waking each day, with one eye closed tight, hoping the beast is asleep and will let my feet touch the floor. It rides my back even when it is not attacking me, and threatens to strike at any time. I can't make definite plans without allowing for the presence of the beast. My calendar is filled with "penciled in" events. Nothing written in ink. That would present a specific target for the monster. Sleeping, waking, eating, going out to shop or see a movie, going to church, even when I go to the restroom can be determined by the force the beast lays on me. The daily grind of living with this beast tests my strength on a daily basis. And it tests the strength of those I love.
The burden is on our loved ones and friends as well.. It scares others away. Friends who were close no longer call or visit. Family gets tired as they are sucked into the grind. They reach a point where they are overwhelmed by the beast as well. It becomes tiring for them. They may not be able to see the beast, but they definitely feel it's presence. Almost as much as I do. They begin to not make plans, or make their plans without me, leaving me feeling like an outsider who is lost and alone. So many times I have stayed in bed, nursing a migraine, in an empty house. Compassion gets harder to find as the one's around us have to deal with the monster in our lives.
Sometimes, I feel as though I am the beast that preys on my family. A beast of burden that weighs them down as much as my own beast does to me. There are times when their actions and their words reflect the burden that is placed upon them. I try to suffer my illness in silence and not involve my family, but there is just no way that I could live without them. Do others have the same sense of being a burden? Do you have ways to fight back against the beast and gain your life back? Please share.
Andy, I am nursing a migraine today. I am disappointed not to go to a neighbor's graduation party. The thing that is getting me through today is, as cliche as it sounds, being in the moment. Each second of pain is not that bad by itself. So that's one thing. Next, knowing that there are others. Your post helps me feel less alone. In the last three months I have discovered this whole online community and I can no longer feel like a martyr. I don't understand this disease, but I know I am not being picked out to suffer alone. I remember the good moments. And in my case, thank god, I am much better than I was a year ago, even three months ago. The trend in tiny increments is getting better. I pray this is for you and others as well. When I feel my most spiritual, I feel things are exactly as they should be. Hard to explain, I have only had the feeling a couple times, and you can kick me for saying it, if you want. It doesn't make sense. Life doesn't makes sense. It is not a linear story with conclusions and redemption. But my greater self understands that there is a big picture beyond my understanding, and in that big picture I can put my faith. This helps, every once in a while. And I stop fighting, bit by bit.
ReplyDeleteKatharine, Thanks for reading my blog. You're right that we are not alone. Keep up the fight no matter what.
ReplyDeleteHi Andy.
ReplyDeleteWe must be on the same wavelength. I have been reaching out to friends that have/had loved ones with chronic migraines to see how they feel/felt on the other side of this disease. I have felt like a burden to my family, especially my husband. I was throwing a pity party last week while leaving the docs office and mentioned it to my husband, he said he was having one as well. I asked him what he was having a pity party over and he said watching me go through this was difficult for him. I felt so guilty to be a burden and stress in his life.
What my friend told me about being on the other side was that being appreciated for what she was doing really helped her. She told me that affirmation of appreciation and being told specifically how to best be of help was a comfort.
What I realized is that our loved ones feel helpless and powerless. Giving them affirmation that they are useful and appreciated is key to them. I can't hide the beast from them, but I can try to let them know that by them being there for me is a tremendous help. I only know what it is like on my side, being self-centered in some ways kinda comes with the disease, we get caught up in the pain because the beast demands it. I am going to try to remember that my family is suffering along with me and I can make a difference by telling them that I appreciate everything they do for me.
Thanks for listening.
Kathleen
Andy thank you so much for being so open about your daily battle. I have been going through the worst migraine flare up of my life these past few months. This beast has strained my marriage, friendships, & job. I struggle to keep going when after I have battled through the physical pain of a migraine I have to then cope with the emotional pain of isolation, guilt, regret, and loneliness.
ReplyDeleteAndy, you have just described exactly how I feel. I have been unable to put this 'beast' feeling into words or fully describe it to family or friends until now. I'm actually going to send your blog post to my best friend because I've been struggling for so long to convey that exact message. Thank you.
ReplyDelete