What kind of coping strategies do you use to be able to live with chronic pain or whatever symptom of erythromelalgia that causes you most discomfort? I don't mean medical regimes or using cold water to reduce pain but mentally.
I hope I don’t sound pretentious, but among the things that have been working for me over the years are:
– Picturing the disease as like having a handicapped child or a parent suffering from Alzheimer's has helped. I just can't walk away from the situation so by accepting it, I don't really think that much about it and how it limits me – it blends in with my everyday life.
– I often use a particular mental picture when pain sets in: I see myself as a fishing net being hung up to dry. When the wind (= pain) increases, it doesn't matter very much how strong it is, since it blows right through the net, which just keep floating slightly in the wind. By not resisting, they're not damaged. I acknowledge the pain without mentally fighting it.
– I make a list of the problems that are fixable in my current situation, whether they are of medical nature or something else, and fix them. That makes it easier to cope with what can't be fixed.
– When describing my life to myself and to others, I try to use positive milestones, not negative ones (unless specifically asked to provide an anamnesis, like in my profile here). That is, not »In 1997 I first went to see a doctor for my cardiac dysrhythmias» but »In 1997 I met Y., who became and still is my best friend, the best friend ever and such a support.»
I really would like to know more about your coping strategies to make life livable. I have much to learn.
I’m still new to all this and have been wallowing in self pity and frustration over the last couple of years. I’m seriously struggling with coping mechanisms . I’m a bit of a control freak lol. So obviously this condition bringing me to my knees has been devastating. But since finding this support group I’ve been able to regain at least a small bit of control simply with knowledge. Researching and finding out any info I can has brought me so much more confidence in being able to cope with the chaos.
Sounds like good information for coping strategies. I'm not a sufferer of the syndrome directly, but my mom has it. With her version of the disease stress which will seem to cause her heart to work more can trigger flares, as well as diet. I don't know if she uses her imagination much to cope with it, using mental imagery. But at times she has distracted her mind watching movies. We have a movie kiosk type setup with ripped movies. Old movies she likes that she can watch over her ipad. This allows her to watch one of hundreds of movies which are old musicals and comedy's. Nothing too exciting as that can cause her heart to get worked up and may make a flare or pain worse. This is of course a kind of distraction, because she is really unable to be active. She also at times listens to bible on cassette or an ipad bible and that can help her go to sleep at times. She also does little craft like things which are within reach. When I say crafts I mean drawing drawings on cards. She makes personalized drawings on cards to friends and relatives. Those things keep the mind busy and helps a bit, just coping with the inactivity forced on the person with burning foot syndrome. She will read some as well. She really doesn't watch a lot of TV over the air, but some netflix and mostly classical movies from our home library.
I enjoy a kind of number puzzle called ‘killer sudoku’. It is similar to the popular sudoku puzzles but takes a little more logic and reasoning. (No higher math required, just addition). I bring my puzzle book to bed and work on them while the crazy bedtime flaring runs it’s course and medications kick in.