The Plan

My plan for this blog is to share what it is like for me living with disability and chronic pain. My hope is that it helps me cope by giving me a place to talk about my illness, while also helping anyone that may happen across this blog.

I guess I should start with a little background. I’ve lived with pain my entire life. I have congenital musculoskeletal defects primarily in my feet, ankles, and spine. Walking and running have caused me severe pain from birth. Since it was all I had ever known, I assumed that everyone felt the same and that if I complained, it would mean that I was a weak crybaby.

As I got older, it became harder to endure. I waited tables for years, but in my last few years of working, it became increasingly difficult to cope. I would lie and say that I had to use the restroom, but I really just needed to sit down. It started to become more and more difficult to simply walk to my car at the end of a shift. One morning I woke up, pulled off the covers, stood up out of bed and crashed to the floor. My feet and ankles had just stopped working. It took a few minutes to get up off the floor and get on with my day.

In the years since that morning, I’ve had countless falls, a failed back surgery, too many emergency room visits to count, and a laundry list of other procedures. I’ve learned a lot about myself, my family, my friends, and how my disability affects my relationships with them. Hopefully, some good will come of sharing some of my life and experiences here.

 

The most beautiful people we have known are those who have known defeat, known suffering, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep, loving concern. Beautiful people do not just happen.–Elizabeth Kubler-Ross

The Weight of Caring

(For some reason this post looks like a big wall of text. I can’t figure out how to fix it. In the draft, there are three paragraphs. It just looks like one long paragraph when I publish. I’m sorry.)
This State Farm commercial hit me pretty hard, because it’s exactly how I feel every day. It’s exactly what is on my mind every day. When I first saw it, I showed my husband and he said, “Wow, that IS you.” Hungry, abused and neglected animals will stay on my mind all day. Sex trafficking victims will pop into my head and I’ll think about what they are enduring right then and start crying. War vets struggling with PTSD and/or physical pain not getting the help they need will come up in my thoughts and I will get so angry that my skin gets hot. And the next thing and the next thing and the next…
This is on top of carrying my own problems, worrying about all the different things that are affecting my family and my friends. Like everyone else, my family and I are dealing with emotional, financial, and health issues. That stresses me out like crazy. I have friends who are dealing with so much crap and I worry about them. One friend who is a recovering addict, doing amazingly in that area, is dealing with some heavy duty medical stuff that includes severe chronic pain. She’ll probably need surgery. I started crying thinking about her handling all of that without pain meds. I told her that I wish I could absorb her pain for her, even on top of my own, because I could take pain meds. I have a hard time dealing with suffering, whether it’s my own or someone else’s.
I’ve started pulling out my hair. I don’t mean that metaphorically. I mean I’ve actually started pulling out my hair. I recognize that this is a form of self-harm. I am actively trying to resist the compulsion, but I think I may need to talk to my therapist about it. I’ve always been a worrier. I’ve always cared about what is happening to everyone everywhere. I’ve always had a strong sense of empathy. I don’t know why it seems to be so much more intense lately.

Whatever (subject warning: talk of suicidal ideations)

I had planned on writing about depression in general, but that is going to have to wait. I don’t have the energy.

This was going to be a completely different post, but I can’t think over the noise of my pain level and despair today. I am not what a mental health professional would consider to be suicidal or a danger to myself, but I do sometimes have those thoughts. Today is one of those days. It’s not that I want to die. I absolutely do not. It’s that the only relief from the pain I am experiencing today would be death. It’s just that high, complex, and constant. I am exhausted with all of this. While I am in no danger of harming myself, death is pretty much all that is on my mind today. I know that it will pass. Maybe by tonight, but most likely tomorrow. I just have to ride it out.

That is how I am feeling today. I needed to get it outside of me. I am not weak. I’m just struggling today, and I’m not ashamed of it.

If there were less stigma on feelings like this and people felt more able to reach out for support, there’d probably be less self harm and suicide. If you are reading this and you are struggling for whatever reason, please talk to someone–anyone.

Lifeline: 1-800-273-8255, in case what you are feeling doesn’t seem like it’s going to pass.

Relationships: Friendship

22175c14950698b03af698785e40deb6Maintaining friendships can be challenging in average circumstances. Doing so when you feel like crap all the time, whether physically, emotionally, or both? That’s even trickier. For a long time, I was able to compartmentalize my pain. It was always there, but I could still hang out with friends, go out for drinks, go dancing, walk around amusement parks, and do other touristy fun stuff. Then I started having to fake it and force myself to ignore my increasing pain levels. Then I started having to sit out certain activities like dancing or walking around some outdoor event. Then came the need to cut the outing short, to cancel plans last minute, and ultimately to avoid making plans altogether. It left me with a mix of emotions. Sometimes I would feel forgotten by friends. Sometimes I would feel guilty for not being able to be an active member in my relationships.

Everything about having a social life is extremely exhausting for me. If I want to go out, I have to expend energy showering and getting ready. That can’t start until a couple of hours after I’ve gotten out of bed. The reason for that is because I’m extremely weak and my pain is a 9 on the pain scale upon waking. Once I get to where I’m going, I have to actively push the pain down so that I can be present for my friend/s and whatever it is we are doing. I’m also worried that if I let my pain show in my face, that they will think I’m fishing for sympathy, making the outing about me, or that I will just ruin our time together. I’m also worried that I’m going to have a pain spike while I’m out and have to cut everything short. Being in my head is annoying. Pain spike or not, I will be out of commission for a day or two after my day out.

Recently, I had a sort of clash, for lack of a better word, with a friend. She told me that I had hurt her because I didn’t make an effort to see her. I immediately bristled at that. I felt that she was trying to make me feel guilty over something that was out of my control. So we went back and forth, and we ended up upsetting each other and hurting each others’ feelings. But the truth is that neither one of us was actually in the wrong. We both had valid emotions about the situation and valid needs. We were just coming at it from our own perspectives. What was I so upset over? My friend missed me and wanted to spend time with me. She has her own issues she is dealing with and wants to share. She isn’t here with me every day. She doesn’t see what I deal with on a daily basis. She doesn’t live in my body. She doesn’t feel what I feel on an hourly basis. She isn’t psychic. All she knows is that we haven’t seen each other in a long time, and my lack of effort hurts her. Instead of getting upset or offended, I could have calmly explained to her exactly how hard it is for me to be social and why. The perfect tool for that would have been The Spoon Theory. If I’m honest, these past six months or so have felt as though I have, not just limited spoons, but a deficit of spoons. While I absolutely should practice self-care, I should also understand that as the other half of this relationship, she also has needs. I’m not where she is and I don’t see what she deals with every day. We should be communicating and treating each other with empathy, because that is what friends do. Life events and illness don’t change that.

If it weren’t for the Internet, I’d be completely isolated. In addition to being able to talk to the friends I’ve made in person, it’s allowed me to make friends with people I’d otherwise never have known. Dealing with a chronic illness is a daily battle. Carrying it without my army of friends would be a lonely thing.

Pain, Actually?

cane

  • I feel pretty good today. I can clean the entire house in one go, right?
  • I doubt I need to bring my cane with me today.
  • Maybe I can hold down a traditional job outside the home.
  • Am I actually disabled?

Periodically, I go through bouts of skepticism in regards to my disability. It’s skepticism born of guilt, frustration, doubt, stubbornness, and sometimes self-pity. Sometimes it’s internal skepticism influenced by external skepticism. There is stigma attached to disability in general. When your disability is the result of an invisible illness, that stigma is magnified. It’s very easy to internalize all of that and start questioning yourself and your own body. I go through different jobs in my head, and it becomes apparent, again, that I cannot carry out the duties these jobs entail. I end up frustrated, angry, and full of self-pity. I come out of the housework gate hard and fast, determined to make the house spotless and clean. I am determined to prove to myself, to everyone, that I am not useless. Not even halfway through, I hit a wall-no, crash into a wall. My strength is drained. My pain is so intense, that I’m queasy, and I’m frustrated, angry, and full of self-pity. In the end, I cause myself more pain-emotional as well as physical.

I guess the point is acceptance and recognizing that having limits is perfectly fine. The smart and healthy thing to do is to respect those limits.

  • Whether or not I feel awful or fantastic, no, I can’t clean the entire house in one go.
  • Whether or not I need it at the moment, I should probably have my cane on hand–just in case.
  • No, I can’t hold down a traditional job outside the home, and that in no way diminishes my value as a person.
  • Yes, I am actually disabled.

Simple acceptance would be more productive than being at constant war with myself and my circumstances.