The pain is insanely bad today. I can't seem to complete anything. I'll start something like cleaning the kitchen and get half way through and hurt so much that I have to stop. And then I'll get up, and with the lovely old memory, have forgotten that I was working on something and start something else like laundry... So, as a result all of my house is halfway clean, and I am in double the pain... Oh Well.
Se La Vie.
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Oh Trish - its the middle of the night and I am awake (don't ask) so saw your post. I am sure I have said this before but have you ever been on or been offered a pain management course? Teaching multi-disiplinary approaches to pain management incorporating pacing, etc... It seems to me that most of the time the expectation levels of what you have to do every day with work, chores etc.. is just too much. You may say that you have no choice but to do the housework but honestly - I think its time all this stuff was shared out in a much more democratic way. Other half could put the washing on and mop the kitchen floor whilst you read the kids a bedtime story for example. These sort of chores with your condition (s) really do not go with living well with a chronic condition. At some point this fact will have to be addressed otherwise you will end up unable to do anything at all due to continually over doing it and arriving at constant acute pain - all of the time if you are not there already! Things have got to change -something has got to give. The hardest thing of all is asking for help when living with EDS etc. but perhaps starting with a conversation with other half saying you cannot go on like this and listing the chores which physically are the most taxing and simply making the EDS worse may not be a bad idea and then listing his suggestions and alternative ways to do things as well as yours and muddling through the quagmire together with the five worst offenders as a start to work with. Honestly Trish - I simply have to say all this, I can't bear that you put up with all of this pain some of which could be changed a little by changes in housework rota's. You could do all the paperwork for example in return for him mopping the kitchen floor and changing the beds. Something has got to give.
ReplyDeleteApologies for vitriolic post as you can tell I also am somewhat fed up with the ramifications of EDS and all that goes with it tonight. This does not mean that I don't mean what I say above hun, just that I hope my plain speaking hasn't offended. Sometimes telling the truth is hard and I just found that hard to say but I would not be acting with verity and probity had I not said it.
Take care as always Trish. I hope the pain eases soon.
Of course you have not offended me at all! If anything you speak the truth I need to hear, but have the hardest time accepting. I love my husband, and now that he has taken over working most of the time and has to run me around and take care of kids when I go in the office, I have already doubled the load on him. On the good days when I can remember and think I do delegate to my girls. They love to help, as long as we make it fun, but when I don't feel good, it's like instinct to do those things that don't require me to think. One is playing on Facebook (hehe), the other is cleaning. I can just get started and get into a groove and I don't have to struggle to think. But, as you know from personal experience, it has taken a huge toll on me physically. But, I don't feel it until I have already done it and its to late. Trying to pace myself and not over do it when I am not hurting is hard. I am used to doing everything. Call it overachiever, call it whatever, but I then I feel it later.... It's all new to me to be able to put a name to the face. To know why I have never been very good at completing those kinds of physical tasks. Back when I was trying to lose weight by exercising I used to run on the treadmill and do crunches and lift weights, and I felt like I had jumped off a 30 story building by the time I was done. I knew I wasn't supposed to feel that way, but my doc wouldn't hear it. "you just need to get used to it." Anyway, I am not doing nearly as much as a few months ago. In September I was doing 4 days a week as a nurse and 2 days a week in school and taking care of house and kids. So, now I feel guilty not getting it done when I am home so much. I know what you say is true, but it is a major adjustment trying to figure out how to get there with the least amount of trauma to the family. At least I can teach my kids with EDS these things now while they don't hurt. =)
ReplyDeleteAs far as pain management goes, I know it from the nurses point of view, but not as the patient. I have had multiple docs say "You need to find yourself a good pain management doctor...." I guess I put that on the back burner until my head was fixed. Thanks for being there for me though. It is a major adjustment...