One topic which I still struggle with in dealing with RSD, and pain in general, is acceptance. I find it difficult to accept the pain, and the challenges it brings to my life. I want to get better; I don't want to accept the pain, and the way it's gotten worse. But recently, I started to realize that maybe, I don't have to accept the whole thing, just little parts at a time, and maybe each part needs to be accepted multiple times. In essence, it's like I'm on a whole journey of acceptance. Here are a few little things I've recently accepted:
Accepting My Needs
The first thing which has been helpful to accept recently is that I have my own needs, and that it's important to acknowledge. I frequently want to have needs which are exactly the same as the needs of other. But that's not always possible, and I'm working on accepting that.
One example is how I need to choose my treatments. There are some treatments which are appropriate for others, which are not appropriate for me. I used to want to appologize for this, or make myself more like others. I still struggle with that. But I'm now seeing that there are some things which won't work for me, and that that's perfectly acceptible.
In other ways, I'm different from others my age. One example is that if I want to go to the mall, I can't do it by walking. I need to use a wheelchair for at least part of the trip. That's hard; I want to be walking. I enjoy the feeling of walking in the mall, but I can't enjoy it if I'm in severe pain. My friends seem to naturally accept that I need to do things differently right now.
Another need is the need for relaxation and self-care time. While others can go full steam ahead for weeks on end, I need to take time daily and also weekly to relax and care for myself. It's hard, because on the one hand, I want to do everything as quickly as possible and do as much as possible. But if I slow down, I notice that I can sometimes decrease the intensity of my pain, but even if I can't, I can decrease the destress or suffering aspect of dealing with pain. Self-care time can be relaxation/imagery/breathing exercises, nice relaxing baths, or just being mindful about whatever it is I'm doing.
Accepting the Need for Acknowledgement
One thing which I frequently need to accept is that I need to acknowledge my feelings, acknowledge my pain and acknowledge the things I do well. I frequently do this through writing, but I've also been known to do it verbally while talking to others.
One example is blogging. I'll sometimes write about how upset, sad or challenged I feel in dealing with something. I usually start by writing "I feel bad about writing this, but..." Then write in depth about whatever it is I am upset about. That simple step seems to help a great deal.
This is one area where acceptance can be hard, though. We're usually conditioned to believe that we "shouldn't feel bad". So it's hard to specifically say, even if only to ourselves, that sometimes life is hard and we don't like it. So that conditioning makes it difficult to acknowledge our feelings, and even more difficult to accept the need for putting continued acknowledgement into practice. But again, it's something I've recently accepted.
Accepting the Need for Mutual Support
One of the common values of Americans tends to be the desire for complete independence. We don't like thinking we need support. But I've had to realize that the need for support is going to be a big part of my life.
There are the physical types of support, either in the form of "help" in doing things, or in the form of objects which provide support. The first, help in doing tasks, is tricky, because the tendency I have is to want to prove that I can do everything on my own. I want to show that I can do things. But that's getting harder as time goes on and the pain seems to take over more and more of my body and my life. I find I can sometimes find ways to compensate for the physical difficulties of pain, but there are things I just have to accept needing help with. That can include accepting help with shopping, or accepting a ride when I used to take a bus, for example.
Next, there are the objects which provide support. This can be everything from a brace to a cane to a pill. These are all things which sometimes have huge amounts of stigma around them. Some would argue that they are over-used, but I'd say I actually find more resistance to using them, and lots of comments about how people are against these interventions. Even as someone who believes fully in the idea that disability isn't as much of a problem as society believes it is, I've internalized a lot of fear and concern around using a cane and a brace. And we won't even go into the amount of effort my doctors have had to use to convince me that I am not a bad person for needing medications.
I actually find that the physical forms of support can really get people riled up, myself included. There is a lot of emphasis put on the myth of physical perfection. I have yet to see someone who lives up to that myth. But it is something I'm all-too-aware of. I personally find that the best way to accept physical supports is to examine the reasons I have for fearing them, validating them, then finding ways to minimize their impact.
I'm going to put myself out on a limb and discuss opioid medications (aka narcodics) as an example of using the validation/minimization method. I really struggled with whether to accept or use these particular meds, because I was quite afraid of them. So, I really talked with my doctor about the medication he suggested. Thankfully, I have amazing doctors who spend the time to talk to me and take my concerns very seriously.
My first fear was that I was a bad RSD patient for accepting the meds. We talked about that for a while, and it turned out that it's not really the use of a treatment that is morally reprehensible (in the case of a med which is relatively safe), it's what you do on the meds which would be "bad". So if I do things which injure myself or others on the drugs, and that is truly why I'm doing those harmful things, then we'd need to get me off the drugs.
The next fear we discussed was that of addiction. I was really really concerned about that. I learned that there are ways to minimize that risk, and that the risk is much lower than perceived (note that my addiction phobia is much lower now that I've explored the issues of addiction further, and that I believe those who live with addictions and face them are the most courageous people I know). I learned about drug screenings (which I quite willingly submit to, even though they're unpleasant), contracts and the safe and proper use of the medications.
The reality is that I still don't like needing the meds to function (who does?), but I do accept them because they really do help give me better pain coverage.
Now there's the other forms of support. These include psychological support and social support. For me, these are easier, though not always easy, to accept. As a social work student, I tend to want to be the person giving the support. But I'm learning that relationships cannot be lopsided and be healthy.
My friends are amazing about providing the emotional and social types of support as well as the physical types of support. Even having friends who know what you struggle with most, before you say anything can be so comforting.
There's also the kind of support of being around or talking to people who deal with similar experiences.
I remember the feelings we frequently have at conventions, where we're around others who know what it feels like to feel scared to cross the streetafter being hit by a car, or what it's like to get your first guide dog. I find this kind of support in dealing with pain and RSD through this blog, through LiveJournal-specific communities, blogs, forums and occasionally in person. This happened to me most recently at our local
store. It's hard to describe how amazing that is, having that personal support of knowing others understand, but it's something I'm glad I accept.
I originally described acceptance as a journey, but I just left it hanging because it's much easier to describe now that I've described the experiences I've accepted. Acceptance is a journey, because we need to find the right level of acceptance. For example, accepting the need for acknowledgement is good, but accepting it to the level where all I do is acknowledge my feelings and pain wouldn't be healthy. Accepting the need for physical support is good, but accepting a level of support I don't need could have harmful effects. And of course, we're always changing. So I might need to work on accepting one thing now, and another thing later. And accepting something that's harmful isn't good. It might be necessary to fight something, too, and in that way, acceptance must be a living, changing journey.