Yesterday was such a beautiful day! The sun was shining and not a cloud in the sky. To be honest with you though, I didn't enjoy one bit of it yesterday. Sunday, I enjoyed the sunshine and spent the afternoon at the beach. It was beautiful, cool, and clear. Yesterday, the sunshine was a reminder of just how difficult summer can be for those of us with CIDP. Any excessive heat and my hands and feet go numb. I mean, completely numb and it feels horrible. I just don't deal with this very well at all. For some strange reason, it makes me mad. No, it makes me furious! I don't want to waste even one minute of my life being mad, so I'm open to any suggestions as to how to make the summer heat more bearable this year. Have any?
I think I could handle it better if I gradually went numb and not instantly. If I'm in the car and get hot, it's miserable. If I'm walking from the car to a store and get hot, I'm miserable. Even yesterday, just going from the car (in the garage) to the back door of the house in the heat...I was miserable. I will NOT be miserable because of the weather this year! Please send me your suggestions for staying cool. I'm sure things are the same for CIDP patients in extreme cold, right? I'm looking for suggestions I can use in the car, running errands, going to and from work, etc. I usually stay plenty cool when I'm home because we keep the air turned down so I stay comfortable. There's a ceiling fan in every room of my house and a fan that I point on myself while doing my hair and makeup in the bathroom. I'd love to hear your thoughts. Sorry if I sound like a whiner, but this is real life with CIDP. It can be so frustrating!
I'm very thankful for a cold front that came in this morning. At least I'll stay cool this week! Thank you, God for the crisp, cool air even if only for today.
6 comments:
Kristen,
I'm Alene's friend,Kay Carlson. Perhaps you remember me from some music we have done together.
When my sister had neuropathy in her feet from chemotherapy, she would use the blue ice to keep her feet cooler. She would just lay her feet right on the frozen plastic, even in the car. She would also put her feet on a cold soda can, which is a bit more gross, especially if you ever plan to drink that soda.
I too have neuropathy in my fingers and feet, from chemotherapy. Luckily for me, mine came on gradually and is VERY slowly improving. My fingers are finally well enough to be back to playing the piano for church. Praise God! The doctor used to say it would go away, but now says that it may not ever completely go away. Ungh!
I'm sorry that you feel so bad. I'll put you on my prayer list.
Kay
It's great to hear from you, Kay! Of course I remember...we had so much fun preparing that music, didn't we? The blue ice is a great idea and I don't know why I didn't think of that. Alene told me about your chemo and you've been in my prayers. I'm so glad you're able to play piano again and I'll pray the numbness goes away for GOOD! It's amazing how different our circumstances are, but how similar our struggles are. God bless and hope to hear from you soon.
Love, Kristen
Hi Kristen-
How are you? Thanks so much for the comment! I love your blog. I have the same problem with heat too. If I am out in the heat even just for a few minutes like getting into the car-I feel like I have been run over, am weaker, and my hands get all tingley.
-Keep in touch:)
Jessica
I too have CIDP and know your plight with heat. I use a "cool tie" for much of the summer. It does help. Just google "cool tie" and you should be able to find a pattern for them.
Hi, I have CIDP too and this summer I've found some success staying cool by wearing a fishing/safari vest (lots of big pockets) and putting all those wonderful ice packs that come with my IVIg shipments in the pockets. They stay cold for hours even in the hot hot sun and I keep a cooler in the car with refills. I got lots of questions at a recent outdoor concert when everyone was sweating except me. :-)
Hey "Anonymous"...the ice packs are a great idea! They put so many in each IVIG shipment that I never know what to do with them. Great suggestion!
With HOPE,
Kristen
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