Here comes the sun, and it’s alright

Birthday cake with hard white fondant icing as...

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Do you have those times that you don’t even realize how much you take for granted until it smacks you upside the head? I sure do.

We had our air conditioning unit break down several weeks ago. I can’t imagine how the repairmen are staying up with everyone, because we are in good company. It was exceptional service ~ they came quickly, they fixed it in 10 minutes, and it was just a memory. The temperatures had been high for the midwest, but not like what was about to occur to most of the nation.

With MS, heat spells one word for me – disaster. In fact, the hotter it gets the more my symptoms increase. To put that in perspective, I have been inside the house the entire day for weeks, except for an occasional hour here or there. I am sure when this first occurred, it drove me nuts. It took enough times of spending weeks or months in my wheelchair, but I think I’ve finally decided that my home is a pretty good place to hang out!

I was starting to let it get to me as weeks of extreme heat has worn on, however. Even the most mundane activities have gone by the wayside. Tonight, I had an invitation to a birthday party for a friend’s child. This was a great party, well planned out. We have a neighborhood pool, so my friend had rented space at the pool and invited about 30 people.

I also would add that I love, love, LOVE birthday cake. White cake, specifically. I arrived a little late for the party, with possible intentions of swimming. None of the adults were getting in, so I quickly let that idea fade away. I did, however, have probably the best piece of birthday cake yet this summer. Yeah, this was worth the heat.

Oh. . . I forgot to mention. It was 94 degrees at 6:30 – before factoring in the heat index.

I was visiting with friends, watching the activities, and having a great time when THE FEELING came over me. That ‘I won’t be able to make it back to my vehicle’ feeling. That ‘My sentences are not making sense’ feeling. That ‘I’m in excruciating pain’ feeling. That ‘I’m scared to death and I don’t want to let it show on my face’ feeling.

In every past year since being diagnosed, I would have hung around for a  longer time. Just enough for it to be too long. Just long enough for a setback to occur. Just enough to be really trapped because I then couldn’t walk, or worse, depending on various factors.

Tonight. . . I explained quickly and succinctly to the host that I needed to leave. She knew exactly why, and offered to help me out. I made it without help. I think that’s called pride, but I might have the wrong word. : )

I drove the short distance (less than 1/2 mile) home, and plopped down on the couch. The pain has set in, and I’ve been alone for hours now. I am too weak to get back to the bedroom for pain medicine, but someone will surely arrive soon to help me. I can see well, I am thinking clearly. . . I think I’m getting better at this!

Sitting for hours on the couch gives you time to think. I thought about Joplin tornado survivors. Many who lost their homes are living in homeless shelters ~ literal tents ~ while they wait for the installation of permanent housing. They have been living like this for over 2 months. Just one of the facts that probably doesn’t make national news any longer, but is a constant reminder locally of how permanently their lives have changed.

As I came home, frustrated, from what should have been a lovely evening with friends and neighbors, I couldn’t escape how good I have it. I could list what I don’t have, but the list of my blessings is a far longer list. I can’t imagine living in a literal tent for 2 months for any reason. To live there for over 2 months during the ‘heat dome’ (the meteorological term for the heat wave moving across most of the US) suddenly put my life into amazing perspective.

They expect temperature to approach 100 for at least another week. That’s okay. I have cold water, air conditioning, books to read, a normal restroom, my own kitchen, a bedroom with doors on it. I have it pretty good.

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4 thoughts on “Here comes the sun, and it’s alright

  1. gendjlee July 26, 2011 at 11:29 pm Reply

    You know, a post like this reminds me how lucky I am that my mom is doing as well as she is. Not only that, but I didn’t even realize that the heat exacerbates MS symptoms. I asked her about it tonight, after reading this, and she admitted that it does affect her – she spends a good chunk of each day outside working on her farm – but as long as there is movement in the air, it’s not so bad.
    I want to get her a clip on, battery powered fan, for her hat, knowing that there have been some days during this muggy heat wave that the wind hasn’t been very strong at all.
    I guess I understand why they wait until October to do the MS Challenge Walk.
    I’m a little frustrated about that too. I’ve been trying to help her raise money so she can walk in the event, but haven’t had much luck or exposure to her blog.
    Still, even if she doesn’t get to walk in the event, she is in great shape for someone with her condition, and frankly, I worry about her doing a 30 mile walk, even if it is over two days. I understand why she wants to do it, for all of her fellow sufferers that can’t, but I’m torn between concern for her own safety and a desire to help her reach the goal she has set for herself.


    • Overwhelmed By Joy July 27, 2011 at 2:08 am Reply

      It is such a delicate balance in knowing how factors like the heat will affect someone. How precious that you care so deeply for your mom! I can only speak for my experience, and it isn’t something I’ve ever confirmed with my physician ~ but. . . I know that I used to be able to tolerate the heat much more so than I now can. The ability to be out in the heat has been a progression. There are some wonderful products available to help her stay cool. They have a cooling vest, which can be a little bulky if you are moving a lot. It might be great, however, for times when she is out quite a bit.

      I have a rag that is amazing. It can be put in cold water for just a minute and remains cool for hours! I know that the most important thing is to keep certain areas cool, such as the back of the neck. I am very, very quick to respond if I have gotten too much sun so that my body temperature doesn’t remain high. I definitely would tell her to check with her physician first, of course. If I am overheated & concerned about having a possible fever, I will take something fever-reducing, such as Ibuprofen. I had a touch of a sunburn recently because the sun won out over my sun block. I also immediately put aloe vera on it because I know a sunburn will raise my body temperature.

      Don’t be afraid to mention that you are walking on her behalf in your blog. We found that we were most successful with people who were able to make a decision on-the-spot, and therefore put a direct link from the NMSS fundraising page set up for you straight to sources of media. If you have a facebook account, this can definitely be done there. Hopefully someone from your nearest chapter can walk you through those steps if you encounter any problems. I’m sure a staff person from the national chapter can assist as well.

      I know I have not been able to complete our local walk for several years due to my endurance. What I try to do is have a plan of ‘escape’ so that if I can’t go any further, I always have a shortcut back. I’m not sure about your walk, but for our BikeMS rides, they always have people who volunteer for the specific role of picking up people who need to take a break. It is understandable that anyone would need a break if they are walking for 30 miles. That is a fantastic goal! Let me know how it goes for you with your fundraising, and how she does. I know it will be very rewarding, even if that means taking a break just to get to the finish line. The emotions are almost overwhelming!

      Best wishes to both of you!


  2. only~a~little~while July 26, 2011 at 11:39 pm Reply

    Your tenacious spirit is such an inspiration to me! Thank you for reminding me to count my blessings!


    • Overwhelmed By Joy July 27, 2011 at 2:10 am Reply

      Thank you! It is definitely a moment by moment choice. I have found the stillness and quiet to be my friend once I got over the need to have such constant activity. That is grace I could never have on my own ~ a God-given gift for sure!


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