Life Tweaks

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I’ve tweaked a few things about my life lately that seem to be helping. First, sweetie and I have put some more effort into our meals. I’m pretty good at planning well-rounded meals, figuring out when things need to be defrosted and making shopping lists. My sweetie is not so good at all that, but can do a lot of the standing and stirring or chopping that takes me forever and makes me hurt, so we have become more team-oriented and are eating better, which makes everyone feel better and lets us save time by eating leftovers instead of figuring out something to throw together at the last minute.

We also scheduled time to spend together during my best time of day, which happens to be around 2pm. By the time sweetie gets home from work, my mental and social capabilities are usually pretty adversely affected by my pain level. While I do get to feeling pretty desperate for non-canine social contact, by the time we’ve taken care of food and such necessities, many evenings I just want to disappear in a book or TV show. Getting to eat leftovers for dinner helps with this, but it’s sad that sweetie misses the parts of the day where I can think and interact without it being so much work. So we’ve decided to try to schedule occasional “lunch dates” on days he can split up his work shift and spend time together that is more enjoyable. Our first one was this week and was very nice–I feel like we’re much better caught-up than we have been lately, and that I was much more able to be fully present for our conversation.

I’m finding it’s really important to think creatively about what can be adjusted to make life with CRPS work better. The timing of when to sleep, take medications, spend social time, prepare food, all that can be very flexible when you really think on it. While I do keep a pretty regular schedule, because I find I sleep better and thus have less pain when I do, if the timing of something is not really working, I can often find ways to adjust my schedule so that things work better. An hourly pain journal was really helpful when I first started with this, but now I find I can get a pretty good idea of my patterns without one, although if I needed to make a drastic change I might need to do the journal again to make sure I get the results I’m looking for. With Pain Brain, it’s usually better to trust important things to paper or the computer than my memory!

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12 responses »

  1. That is really wonderful that you have managed to find a good time when you and your partner can have that part of you that is “Happy Time” rather than the part of the day where you are just sore and exhausted – you have really thought out of the box. That’s awesome!

  2. that’s great that you can get some quality time with your partner. I can’t imagine the pain you live with. For a few years i had terrible unexplained nerve pain, it caused a horrible burning in my face, my face would be beet red…at times i didn’t want to live, if i had to live with that. i was never given anything for pain. in fact one doc gave me face cream, she didn’t get it wasn’t my skin that hurt. it now returns the odd time, but it’s mostly gone. i think it might have had to do with a tooth.

    • You know, a lot of people with CRPS do commit suicide–one of the reasons I started my blog is to have another resource out there to let people who are just desperate know that it is possible to learn to live like this and enjoy life. I’m so sorry you had a bad experience with that doctor–that seems to happen to nerve pain patients a lot. We must come across as a bit nuts since the pain does make ya crazy and it is so hard to SEE anything wrong, but doctors at the least should know better. I’m so glad you got better from your nerve pain for the most part. It very well could be a tooth nerve, or something pinched in the neck, or even invisible shingles pain from the chicken pox virus. Just remember, everyone has a right to have their pain treated. If your doctor won’t, you need a new doctor=-)

      • That’s exactly why I started my blog too Jessica, to show the good and the bad of the disease. I hope it doesn’t turn into a depression fest…I would rather try and inject some positive influence too. Fingers crossed only early days yet :)

        • It is super important to stay positive, and blogging actually helps–when you read what you’ve written, it makes you take a look at whether you’re finding the positives in your situation or focussing on the negative. If I see a lot of down in my last post or two I know I need to work on putting things back in perspective before it gets to depression. And if I am depressed, I find it really hard to keep up with the blog. So it can serve as a metric in a way.

      • I’m sure you’re helping many! It was weird, I saw my family doc, and she sent me to a skin specialist (still didn’t get it wasn’t my skin) and he blew me off, i even told a dentist and asked if it could be a tooth, he wouldn’t let me finish the sentence before he said no. Reading about your pain, I should have been on some sort of pain killers. I would take Advil but it didn’t touch the pain. I never thought of the other things it could be..

  3. This is great news, I love the seemingly small changes that are likely to have a big impact. I’m interested to know more about your pain diary. I go through phases with pain diaries but tend to get told off for over analysing things. I’ve found the pain diary definitely helped me see the bigger picture and identify trends. For example in the thick of pain i didnt think it was improving but when i actually looked at my pain diary the pain pattern had changed for the better. If you’ve got an iPhone I recommend the My Pain Diary app. It’s so easy to use.

    • My first few times with a pain diary, I put way too much info in it and made it too hard and then quickly quit filling it out. The one that worked was just an Excel Spreadsheet with a row for each hour and a column for each of the 7 days, and I just put my pain score and my primary activity for the hour in each cell, and noted my pain relievers when I took them. I kept it for a couple months, and could look at daily patterns across the week, as well as find things that made it worse (arguing with my sweetie) or made it better (intimacy, yoga), and even look through the pages for specific days of the week that were pain triggers (psych therapy day). I am a huge technophile but when I want to be consistent, pen and paper is always what gets me through. And having my therapist ask me for it kept me accountable to someone, which helped keep me going enough to get a good data set. It’s a hassle carrying a clipboard with you everywhere, but you get used to it, and I learned a lot.

  4. Hey!
    If you have an iPhone or an iPad,you should DL “My Pain Diary”. It is AMAZING in so many ways!

    This is a great post. I need to work on a schedule, I feel like it will overall help my mentality.
    Thank you for linking my article for “related articles!” :-)
    Love,
    Heather Lynn

    • I avoid iThings in favor of non-Apple companies because of Apple’s DRM policies. But I have tried several pain diaries and journals on the computer, and finally came to the conclusion that a clipboard with a printout of the spreadsheet I designed is better–I don’t have to worry if I have access to wifi or if my battery is low, I just carry the clipboard and the attached pen with me and I have no excuses to avoid filling it out =-)

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