One Long Week

Sorry for the lack of new posts, this past week has been super busy and filled to the brim with ups and downs. I got to spend the day with my best friend who’s back in town for the summer. We were out and about all day which is always hard on my body, but it was completely worth it. The day after that mom and I had to go clothes shopping to try and find something to wear to my cousin’s wedding this past weekend. About 10 minutes into shopping my back is always screaming at me to go sit down or lay down. That aside I’ve never been a fan of shopping, unless it’s an art store and we don’t have any of those nearby.

My brother and his girlfriend came over from Alberta to stay with us for a few days so they could spend some time in town before the wedding. Then on Saturday we drove the two and a half hours to Horsefly to the wedding. It was a pretty tough and long day, especially with the 2 hours of sleep I got the night before. But, it was wonderful to see so much family and I’m so happy for my cousin. The ceremony was perfect and the location was breathtaking. I got some pretty good pictures with my new zoom lens too. I was practicing with it first on my brother’s ridiculously photogenic girlfriend. 

We stayed overnight at a hotel in Horsefly to shorten up the day a bit and drove back home in the morning. My brother went back home Tuesday and now everything’s generally back to normal and I’ve been getting some much needed sleep and down time. It’s so odd when I think of how I could do all of those things endlessly before without being even a fraction of how sore and exhausted I was by the end of the week. Even now it takes some getting used to. 


My cousin, being the amazing person she is, also made an amazing gesture; instead of doing party favors for the wedding they decided to make a donation to an organization that means a lot to me. With that I chose the ILC foundation because of how hard they work and how supportive they’ve been, and lastly, how important organizations like that are for young people in pain. I’m so indescribably grateful to them for not only choosing to make a donation but for involving me in the decision as well.

7 thoughts on “One Long Week

  1. I know what you mean about shopping trips! That’s one of the most frustrating things about EDS, having to pace yourself, but it makes a difference. I find it really hard to be out and about all day too, especially on holiday, and need to have a rest so I can keep going. And how lovely that your cousin decided to do that.


    • It was very lovely!! :)
      Ahh yes, even after all these years I’m still adjusting to having to take it easy. I agree that it’s one of the most frustrating things. It’s hard to explain to other people how some days you’re in so much pain or feeling so awful and tired that you have to decide between whether you want to eat or shower. It makes the spoon theory make so much sense.


  2. What a wonderful gesture.

    When you go shopping, do you ever think of taking a wheelchair during your worst moments? It took a while for Gen to realize that it makes a huge difference and saves her energy. You REALLY need to think about you. :)


    • It really was :)
      I definitely have given that some thought. Right now I can do it for the most part despite how hard it can be but I do think having that option and seriously considering it (I’m stubborn on that front) could probably make a world of difference, like you said. I’m extremely thankful that the choice is at least there.


      • It’s hard to put yourself there – sort of embarrassing I think to use a chair because you guys always put up with pain and never ask for anything. You were born like that.
        The PT told Gen she “had” to use it to take fuller advantage of her life and most of all not to “waste” energy.
        Now that we’re doing it, Gen is very happy and is less reluctant to use one.


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