Sarah Blake LaRose (3kitties) wrote,
Sarah Blake LaRose

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thoughts about living with pain

Well well...

I had a "duh" moment while I was out earlier. I was thinking about the fact that my pain level has been mounting over the last week or so and is now fairly constant and untouchable with Vicodin. I was thinking about how uncooperative my joints have been when I've tried to do anything, including eating. And I realized the reason why.

I ran out of Triflex!

Triflex is a supplement that includes glucosamine, chondroitin, and MSM. For all this time I have questioned whether it was really very helpful. Now I know. And now I know why Meg has so much energy. She is taking glucosamine with MSM. If what I am experiencing now is any indicator of how much pain my dog was in before starting that... There are no words to describe what I feel when I think about that. No wonder she has energy now!

Alexis had some Triflex in her med stash. She happened to have enough that she was able to lend me a week's supply and still be ok for her trip. I took one this evening. I also discovered that flax seed oil has anti-inflammatory properties. So I took one of those. And I popped a Vicodin.

My pain level is markedly improved. I am more relieved than I know how to put in words. I can turn my head without my neck cracking. I can flex all of my fingers. My knees no longer hurt. I still have some back pain; but I can live with it. I was reaching a point of indescribable fear. The intense pain in nearly all of the joints where my fingers meet my hands was seriously interfering with everything I needed to do with my hands. I have never had difficulty typing until this week... I didn't want to eat because the pain in my face was so bad. When I write all of this out, I feel like I am overdramatizing. But I need to tell the truth. I spend most of my time being stoic because if I dwell on the pain I just begin wondering where it will go from here. Since no one can answer that question, there is really no sense in thinking about it. I've read enough to know what some of the possibilities are--and to know that they scare me. But I don't have much control over them.

I've gone back a few times this summer and read my entry from early July about Charles Naylor, the Church of God minister who continued on with his work following a back injury which left him bedridden. I keep thinking that if he can do that, I can deal with whatever is happening to me. But it isn't what I want, and it still scares me. It's hard to do it with a positive attitude, especially when people cannot hear me talking about pain because they are busy thinking that my life is hard because I am blind. Certain aspects of living with blindness frustrate me at times; but in general these are not the things that sighted people assume are frustrating. Most of the sighted people I know think that basic life activities would be overwhelming without sight. People often think that I am some kind of inspiration because I do things in spite of blindness. I try to explain that when living with blindness you do things differently. In fact, just tonight I explained to my hairdresser that if she walks away from her boiling pot and suddenly hears "blubblubblubblubblub ssssss," she knows it just boiled over without ever seeing it. This is something she doesn't think about because she assumes she will turn around and look at the pot; but she already uses a lot of alternative techniques. Blindness just means learning to trust them. For me, this is all normal stuff because it is all I've ever known. For a person who loses sight, it becomes normal with the passage of time and the use of the skills. I do everyday things because life goes on and everyday things must be done. I don't consider it amazing or remarkable, and it makes me uncomfortable to be considered remarkable because of them.

This kind of inspirationalism sends unintentional messages about my real dreams and goals: they aren't really anything I should expect or strive for because I'm already doing such amazing things by simply accomplishing what is normal. This makes it very hard for me to speak about the genuine challenges that I have set before myself. It also makes it hard to speak about the genuine hardships I experience. This is a rather loaded statement. It has a lot of meanings. On one hand, it means that I am not free to talk about the ways in which blindness truly is a hardship to me. When people are busy thinking that basic life functions are difficult for me, they do not hear me when I tell them that social relationships are difficult. Social relationships are difficult because of this very problem. People say quite often, "I don't know what to say to a person with a disability." That kind of statement is borne out of the perception that people with disabilities are somehow "different" socially from people without disabilities--that the accomplishment of everyday tasks is remarkable.

On the other hand, this statement means that I am not free to admit that I experience hardships other than blindness. If blindness renders the accomplishment of daily tasks so difficult for me, then my life must be consumed with blindness. This is, of course, unrealistic. I have to think about blindness at times by default; but the fact that I am thinking about how to work around it does not mean that I am thinking about it as a hardship. I think about it in the same way that a person who is five feet tall thinks about standing on a stool to reach something on a high shelf--or about moving things to lower shelves so that she doesn't need to use the high shelves. I don't want to be perceived as experiencing a magnified hardship (blindness plus whatever else). That just makes me more of an "inspiration." What I want is to be released to experience hardship in the same manner that the average person experiences it. If I seem to do it gracefully, that is a product of choices I've made to adapt to it and learn how to live with it rather than treat it as an enemy or something to resent. It doesn't make me a saint. It only means that I don't want my life stolen from me; and in order to accomplish that, I have to figure out how to work with my life as it is.

When living with pain, there are not often alternative techniques. I can do some things to lessen the pain in some tasks. I use sharper knives for cutting so that I don't have to push so hard. I soften my ice cream in the microwave. I use a rolling computer bag instead of a backpack. But often there is only a choice between doing something in spite of the pain or getting help and coping with being accused of laziness. I'm still capable of most types of daily functioning, but doing these things is excruciatingly painful at times. It's a kind of disability of sorts that no one can see. In a way, I think things would be easier if I had no choice but to ask for help because I could not do things physically. Since I can do them, albeit with a lot of pain, I feel obligated to do them. It reminds me of trying to stand up and cook a meal when I was dealing with severe vertigo. I needed to find ways to support myself while standing; but because nothing was really preventing me from standing, I plowed on and tried to find ways to do things. At some point, I will have to be the one to decide when enough pain is enough. But this will mean coping with the consequences of asking for help that other people might think I don't need.

I've had conversations with several people recently about why I am willing to scan all of my books instead of working with readers or asking someone to scan them for me. From a blindness perspective, the advantage of having access to full text in a timely manner is worth the time and effort. There are similar choices I have had to make regarding blindness methods. Is something worth doing independently using an alternative technique so that I can do it when I want to do it? Or is getting it done quickly worth asking for help? I haven't figured out yet what the equivalent is in pain terms. Where is the line when I say, "This is not worth the pain...?"


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