Notes on Coping with Disability
I am having an appallingly awful week with my hands, where they are every bit as bad as they have ever been. It is the kind of week where when I go to a restaurant I think about what kind of food I could order that won't require me to use utensils. The kind of week where I do things like brush my hair left-handed because it hurts too much to hold the brush in my right hand. Most of all it is the kind of week in which I feel fear like the mouse that hides in the grass when it sees the hawk circling overhead. The kind of fear where I have to stop multiple times a day and breathe slowly and deliberately, in order that I do not stop completely and be unable to move again. Hardest are the mornings in which I wake up hurting, already carefully measuring what I will be able to do with my day and what I will have to forgo.
A week like this makes me intensely aware of all of the things I have learned to do in order to cope as gracefully as possible. I want to share this list with you in order that you might share it with anybody you know who needs it, because while everybody knows to take anti-inflammatories and ice and rest, the mechanisms of coping day-to-day and sometimes minute to minute are not intuitively obvious. Some of these are things I have learned from others, people like dancingwolfgrrrl and jadelennox and orbital_mechanic. Some of them are things I figured out on my own. Some are really concrete, and some are mental and emotional. Some are a little bit of both.
-- First of all, learn to slow down. SLOW DOWN. Whatever you do with your hands during your day, do it with intention and deliberation. This is especially important when you're in the process of learning the new habits about how to use your hands, and in the periods of pain and flare-up that you will inevitably go through. corollary to this is that you learn to alter your expectations about what your productivity is going to look like.
-- Learn to ask for help. Ask for help from your employers, from your partners and your housemates, even from children. (In fact, the children I know and am close to have been completely wonderful about understanding the limitations of my hands.) Ask for help from store clerks and waiters and friends. If you can get away with not doing something, Don't Do It. I suck at this, which is probably part of the reason my injury has dragged on as long as it has.
-- Because RSI is an invisible disability asking for help might feel really really hard. One of the things that helps me with this is to wear my braces when I go out in public, when I'm going through the airport, when I'm grocery shopping, etc. The braces might not actually help you feel better, but they will signal to the people around you that there is something going on. Sometimes wearing my braces also helps me to remember to not do stupid things with my hands.
-- Do not go to just any physical therapist, go directly and with alacrity to somebody who specializes in hand injuries and RSI. I went through four different physical therapists before I found one who is actually able to help me. If you need help finding a certified hand therapist in your area, contact me -- I have a listing of all of the ones in Massachusetts here at my house, and I can find you information on CHT's in other states.
-- Cultivate being ambidextrous. Learn to use a mouse with your left hand, or to brush your hair, or to use a utensil. Pretty much everyone I know who has RSI has it in both hands, but has it worse in their dominant hand.
-- Even more than being ambidextrous, learn to do things with both hands if you can. Lift your water glass with both hands. Carry your plate with both hands.if you have to load the dishwasher (something I do not recommend you do) load each plate in with both hands. Lift the milk jug with two hands, or pour your tea with two hands. Make your hands share the work. To successfully do this, I often have to go back to step one, which is to slow down in the first place.
-- Seek out tools which will make your life easier. Drugstores often have an aisle of tools for the elderly which are often really helpful for people with bad hands. Buy ice packs that you can strap onto your wrists and forearms with Velcro -- CVS makes a really good line of these. I really appreciate my camelback water bottle with the flip up straw because it makes it easy for me to have water with me without having to unscrew anything in order to get a drink. While I am often frustrated by using dictation software, it is clearly better than any of my alternatives.
-- If you have a debilitating RSI, you're going to get depressed, guaranteed. Seek out what ever help you need for this. To get the emotional support I need I go to talk therapy, I take medication for both pain and depression, and I have worked hard to cultivate a spiritual practice.
-- Pay close attention to nutrition and exercise. Getting regular cardiovascular exercise helps increase the circulation throughout your body, and can make significant difference in your pain levels. Eat fresh citrus, the bioflavonoids in it help your body have a healthy inflammation response. tumeric is also good for inflammation, so eat as much Indian food as you want.
-- This is one of the subtle and complicated ones. when my hands are really bad a part of my brain stops thinking of them as part of my body and starts conceiving of them as if they were incredibly fragile glass tubes that attach to my shoulders in some weird way. (Most of my pain occurs in the space between my elbow on my wrists, but sometimes it hurts in the hands proper, especially around the thumbs, and on really bad days the pain can travel up my bicep.) It is emotionally disturbing to realize that part of my body has become alien to me, but it is also true that I will hurt for longer the longer I keep up this pattern of thought. Partly this is because I hold a lot of tension in my shoulders when I am trying not to move my hands, which impede circulation, and partly it is because it is true that your body needs to feel loved in order to heal properly. When I realize I am treating my hands as an alien thing rather than a part of myself, I have to stop and breathe and try and send energy back to them. It doesn't solve all the problems, but it does help.
-- Get a pillow which supports your neck properly.
-- Use fat pens and pencils. Use lightweight spoons, knives, and forks. Don't carry around any bag that you have to clutch.
-- One of the things that I was shocked to find I had to give up with my hands was a certain level of eco-mindedness. I don't reuse zip lock bags anymore because it is too much work for my hands to wash them out again. I am not as perfect about recycling as I used to be for the same reason. Sometimes I buy disposable premoistened face cleansing towelettes because it is easier to use them than to squeeze out a washcloth. I comfort myself with the thought that these are probably temporary measures.
-- Take a creative approach to how you can use other parts of your body to do things. Can you press a button with your elbow? Can you hold something in your teeth, or between your knees?
-- My mother gifted me with her Kindle, and I am incredibly grateful for it because it allowed me to keep reading. Holding the book is simply too painful, as is turning pages. If you cannot afford such a luxury reading device, invest in a good book holder.
--I have watched a lot of TV since my hands got bad, and a lot of movies, because on some days that the only thing I can do that doesn't hurt. Do not depress yourself more by watching bad TV, it really isn't worth it.
-- Cultivate new joys and pleasures where you can. Listen to music, take up hiking, go to lectures and museums, spend more time with your friends. Remember that you will feel better when you do these things even if you are depressed.
If any of you who have coped with this kind of injury have other things that you want to add in the comments, please do so.
A week like this makes me intensely aware of all of the things I have learned to do in order to cope as gracefully as possible. I want to share this list with you in order that you might share it with anybody you know who needs it, because while everybody knows to take anti-inflammatories and ice and rest, the mechanisms of coping day-to-day and sometimes minute to minute are not intuitively obvious. Some of these are things I have learned from others, people like dancingwolfgrrrl and jadelennox and orbital_mechanic. Some of them are things I figured out on my own. Some are really concrete, and some are mental and emotional. Some are a little bit of both.
-- First of all, learn to slow down. SLOW DOWN. Whatever you do with your hands during your day, do it with intention and deliberation. This is especially important when you're in the process of learning the new habits about how to use your hands, and in the periods of pain and flare-up that you will inevitably go through. corollary to this is that you learn to alter your expectations about what your productivity is going to look like.
-- Learn to ask for help. Ask for help from your employers, from your partners and your housemates, even from children. (In fact, the children I know and am close to have been completely wonderful about understanding the limitations of my hands.) Ask for help from store clerks and waiters and friends. If you can get away with not doing something, Don't Do It. I suck at this, which is probably part of the reason my injury has dragged on as long as it has.
-- Because RSI is an invisible disability asking for help might feel really really hard. One of the things that helps me with this is to wear my braces when I go out in public, when I'm going through the airport, when I'm grocery shopping, etc. The braces might not actually help you feel better, but they will signal to the people around you that there is something going on. Sometimes wearing my braces also helps me to remember to not do stupid things with my hands.
-- Do not go to just any physical therapist, go directly and with alacrity to somebody who specializes in hand injuries and RSI. I went through four different physical therapists before I found one who is actually able to help me. If you need help finding a certified hand therapist in your area, contact me -- I have a listing of all of the ones in Massachusetts here at my house, and I can find you information on CHT's in other states.
-- Cultivate being ambidextrous. Learn to use a mouse with your left hand, or to brush your hair, or to use a utensil. Pretty much everyone I know who has RSI has it in both hands, but has it worse in their dominant hand.
-- Even more than being ambidextrous, learn to do things with both hands if you can. Lift your water glass with both hands. Carry your plate with both hands.if you have to load the dishwasher (something I do not recommend you do) load each plate in with both hands. Lift the milk jug with two hands, or pour your tea with two hands. Make your hands share the work. To successfully do this, I often have to go back to step one, which is to slow down in the first place.
-- Seek out tools which will make your life easier. Drugstores often have an aisle of tools for the elderly which are often really helpful for people with bad hands. Buy ice packs that you can strap onto your wrists and forearms with Velcro -- CVS makes a really good line of these. I really appreciate my camelback water bottle with the flip up straw because it makes it easy for me to have water with me without having to unscrew anything in order to get a drink. While I am often frustrated by using dictation software, it is clearly better than any of my alternatives.
-- If you have a debilitating RSI, you're going to get depressed, guaranteed. Seek out what ever help you need for this. To get the emotional support I need I go to talk therapy, I take medication for both pain and depression, and I have worked hard to cultivate a spiritual practice.
-- Pay close attention to nutrition and exercise. Getting regular cardiovascular exercise helps increase the circulation throughout your body, and can make significant difference in your pain levels. Eat fresh citrus, the bioflavonoids in it help your body have a healthy inflammation response. tumeric is also good for inflammation, so eat as much Indian food as you want.
-- This is one of the subtle and complicated ones. when my hands are really bad a part of my brain stops thinking of them as part of my body and starts conceiving of them as if they were incredibly fragile glass tubes that attach to my shoulders in some weird way. (Most of my pain occurs in the space between my elbow on my wrists, but sometimes it hurts in the hands proper, especially around the thumbs, and on really bad days the pain can travel up my bicep.) It is emotionally disturbing to realize that part of my body has become alien to me, but it is also true that I will hurt for longer the longer I keep up this pattern of thought. Partly this is because I hold a lot of tension in my shoulders when I am trying not to move my hands, which impede circulation, and partly it is because it is true that your body needs to feel loved in order to heal properly. When I realize I am treating my hands as an alien thing rather than a part of myself, I have to stop and breathe and try and send energy back to them. It doesn't solve all the problems, but it does help.
-- Get a pillow which supports your neck properly.
-- Use fat pens and pencils. Use lightweight spoons, knives, and forks. Don't carry around any bag that you have to clutch.
-- One of the things that I was shocked to find I had to give up with my hands was a certain level of eco-mindedness. I don't reuse zip lock bags anymore because it is too much work for my hands to wash them out again. I am not as perfect about recycling as I used to be for the same reason. Sometimes I buy disposable premoistened face cleansing towelettes because it is easier to use them than to squeeze out a washcloth. I comfort myself with the thought that these are probably temporary measures.
-- Take a creative approach to how you can use other parts of your body to do things. Can you press a button with your elbow? Can you hold something in your teeth, or between your knees?
-- My mother gifted me with her Kindle, and I am incredibly grateful for it because it allowed me to keep reading. Holding the book is simply too painful, as is turning pages. If you cannot afford such a luxury reading device, invest in a good book holder.
--I have watched a lot of TV since my hands got bad, and a lot of movies, because on some days that the only thing I can do that doesn't hurt. Do not depress yourself more by watching bad TV, it really isn't worth it.
-- Cultivate new joys and pleasures where you can. Listen to music, take up hiking, go to lectures and museums, spend more time with your friends. Remember that you will feel better when you do these things even if you are depressed.
If any of you who have coped with this kind of injury have other things that you want to add in the comments, please do so.