We're staying with Jeremy's parents, until we move into our apartment in a few weeks. So, it really doesn't feel like we've moved... it still feels like a visit (a long visit, but still a visit). I don't think living in Texas again is going to really hit, until we get settled into our own apartment.
Most people don't seem to understand how DIFFICULT it is to have to really pick and choose what to spend your energy on. It's not like I used to be... "however much I can fit into the day... plus some." I have a very limited amount of energy (some days it might be higher / lower), and I have to choose to do things that I really NEED to do... some days, I'm happy to have the energy to be able to brush my teeth, eat, and sleep. I know that sounds pitiful... but, some days, that's all I have in me.
I talked with a friend the other day, who said to me, "Keep in touch, okay? You have a really bad habit of not." It really struck a nerve with me. I said, "I know" (then there was an awkward pause, like I was supposed to apologize). It's not even worth it to try to explain stuff to most people. It's NOT a habit, it's just how things are right now. And, I'm NOT going to apologize! It's taken me a LONG time to BEGIN to accept the limitations I now have, and I'm determined to try my best to NOT let others make me feel guilty for stuff like this (or for having to cancel plans, etc...). Some days, it's SUPER-hard to be firm about it, but I have to... for ME.
Also, relationships work BOTH ways. I don't have a whole lot going on, most of the time... "yep, I'm still constantly in pain." Plus, I simply DON'T have the energy to do a whole lot of "keeping in touch." My family is the most important, and I try to make sure they know what's going on. Other than that, it's gotta just be sporadic, especially if you refuse to converse with me online through email (this allows me to respond whenever I feel up to it, and to be able to think through what I'm saying) or come to me where I am (I don't drive much now... and I can't, if I have to take my migraine meds).
I'm sorry for the rant... but, it just bothers me sometimes, when people can be so... I don't even know the word... insensitive?
Good for you Jamie! You shouldn't have to apologize, you're the one suffering. I wish I was that together at this point. I still find myself making apologies for my lack of energy, pain riddled days and such.
ReplyDeleteYou are the advocate for yourself and you don't have to apologize for anything. Glad to hear that you will be in your apartment soon and that Jeremy is doing well at his job.
ReplyDeleteHolly
Good for you. I know it cuts to hear such comments from people you care about. My heart hurts with yours and goes out to you. I also greatly understand extended family not understanding my limitations. I do not live near my parents or in-laws, but near aunts and uncles. Before I became disabled, I would spend a lot of time with one of my aunts and her family with two young children. After I became disabled, she did not understand and would get frustrated with me. I can tell in my cousins eyes that she talks negatively about me on the rare occasion (yearly) that I see them. My heart breaks because I thought I would be more involved in my little cousins lives and now one is graduating from HS and I feel so frustrated that she does not understand either. I think my emails/texts telling her I want to see her but just can't sound empty to her.
ReplyDeleteWay to go for taking care of yourself dear one. As my heart hurts when my family and friends don't understand, I know yours hurts in a similar way. I think the most frustrating thing for me is that I can do as much as I can to educate them and tell them, but they still will draw their own conclusions.
I also have difficulty because I am very much an introvert. My extroverted friends/family are the ones who especially don't understand. I think that if they could accept how difficult it would be for me to show up to a family or friend gathering that they would want me to stay home and instead take care of myself.
Sorry for going on and on. Obviously what you have written struck a chord and I appreciate it very much that you have spoken about it!
Love,Kelly
Migrainista: I'm probably not as "together" as it may seem. LOL. But, I'm getting much better at standing up for myself/my health.
ReplyDeleteHolly: I hope you're doing well!
Kelly: I, too, am very much an introvert. Even before my accident, it drained my energy to go to crowded gatherings... and things have only worsened with the added pain. Even if we feel isolated sometimes, I think it's much easier for an introvert (than an extrovert) to be disabled and mostly house-bound.
I understand about wanting to be there for your family. When I was in Tulsa, I hated being so far away from my nephew and twin nieces (all are about 3.5 years old). We'd have such limited time during our visits back in Texas, and we didn't get to see them because I'd sometimes have to miss planned visits there. I'm so grateful that we're going to be near my family now. Actually, almost all of my family (parents, siblings and their families, aunts/uncles, cousins, grandparents) lives in the DFW area (and the couple of others are only a few hours away).
I do wish they could better understand how much I truly hurt. Sometimes, I think they hear what they want and/or draw their own conclusions to protect themselves... it's hard to accept that someone you love is in so much pain, especially chronic pain. I know a few people in my extended family have said, "I don't think most of us really knew how much pain you've been in" - this was around the time I had the surgery to implant the neurostimulator. It's so hard to deal with.
We can only do so much, which can be hard to accept.
I'm not sure if you've seen this before, but the best explanation I have even seen for what you describe is going on was in the spoon theory written by Christine Miserandino. Here is a link to her theory http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/. If you wanted, you can even purchase this theory in poster format. You'll see some people refer to how many spoons they have used and have left which I'm sure they are talking about this great theory. Good luck!
ReplyDeleteMigraine Puppet: I have seen the spoon theory. It's a great description of living with chronic pain.
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