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Having chronic illnesses S*cks


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SO tonight and tomorrow, I will be staying alone here with my pets because dh and both dds will be going on a fun trip I can't go on. They will be going rafting tomorrow with a group from our church. Even if my arthritis didn;t prevent it, and I am not sure how my rheumatologist would feel about going on a multi-hour rapids trip with 75% of both of my knee cartilages gone, my thrombophlebitis and coumadin therapy precludes me doing more dangerous activities like this. There are so many things I used to like I can't do anymore- tennis, horseback riding, skiing are the three I can think of that I enjoyed doing and now can't do because of either the arthritis or the coumadin and blood clots. Since I have been living with the arthritis for over 20 years and now the blood clots and coumadin for two years, most of the time I am just grateful that I am still alive, still walking, still able to do a lot of things I enjoy like reading, gardening, coming her to this forum, etc. I am also grateful that I have the health to homeschool. BUt today, not only is it too hot to garden, there is an air quality alert again for people who are sensitive and that is me. So I am not supposed to even go outside since I have asthma that gets triggered by air pollution.

 

So my family will be eating a nice steak dinner, then rafting tomorrow and I will be doing things like laundry, organizing, and ??? I can't even go get my dinner for tonight until evening because of the heat and the pollution problem.

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Yep....I was just here in tears thinking the same exact thing.

 

I can't even manage driving my kids 6 miles down the road for swim practice. thankfully, they are busy with their Lego, and didn't notice yet. Every ounce of my energy is going into my job right now. I am dealing with a Fibro Fog Flare ( say that 10 times fast:D).....and CFS/CPS....

 

OY!

:grouphug::grouphug:

Try to enjoy your alone time. I wish I could send my guys off to have some fun.

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:grouphug::grouphug:

 

I can relate. It's so hard not being able to join in on family fun. :(

 

(I have no idea what I have, or if it's even anything. My mom has been diagnosed with CFS and Fibromyalgia, though many of her symptoms are not related to that. My symptoms are very similar to hers at my age, but I haven't been diagnosed.)

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:grouphug: I get it, MS rules the world here, and has for years. I try not to focus on what they are doing while they are away, but enjoy the quiet of being home alone. Sometimes that works, sometimes not.

 

Get something *really* good for your dinner, and include a decadent dessert! :D

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I'm so sorry :(

I'd bring you dinner if I could. And just hang out to keep you company.

 

 

I would join, too. I'm so sorry that your day is less than stellar. Can you eat pizza? I'd order a pizza (Hawaiian because I'm the ONLY one who eats it in my family) and watch chick flicks off Netflix.

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Well I was thinking of one thing. My dh is actually doing a fun overnight adventure with our two daughters. He did so many adventures with our son since he helped with his Boy Scout troops. But while he did do things like go on hikes with them for a few hours or a few hour bike ride, he hasn't ever done anything like this -camping and rafting- or any overnight trip just with them. I think this will be a great trip for the girls and him. Especially as my older one will be starting her sophomore year in college soon and who knows how many more summers she will spend with us, what with internships and jobs and all.

 

I am also very happy we found this church. I have felt badly for my dh that my illnesses preclude him having the active kind of vacations he would sometimes want to have. The man who organizes these active adventures for our church also has a wife with arthritis who actually is much more disabled than I am. They do things like rafting, hiking, caving, etc. It is open to all but I think it really serves a good role in the lives of the spouses of chronically ill. I had been thinking how I would ever be able to find companions for my dh, particularly after my girls leave home, for some of the activities he likes. Yes, I can hike- short distances without hardly any elevation changes. And so he does go on walks with me through the botanical gardens or on a nature trail. But he also loves to do challenging things like arduous hikes to neat places or mountain biking or many of the other things I can't do. I am not at all upset that they went. I just wish sometimes that I could still do these things.

 

The one other time I got almost teary eyed in public over my illnesses was when I lived in Florida and went to the AF Wives Club and a nice woman who was probably in her late 70s or early 80s tried to get me to join the tennis group. I was then in my early 40s and just felt so dumb and lame. BUt my doctors and Pt people had warned me that I cannot run and jump and do the kinds of things tennis entails (my ankle fractures never healed completely and while I am fine for walking, running or jumping are strongly discouraged). Now I also have knees that are in jeopardy so even more reason to do gentle exercises like swimming, biking or walking and not more jarring ones.

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SO tonight and tomorrow, I will be staying alone here with my pets because dh and both dds will be going on a fun trip I can't go on. They will be going rafting tomorrow with a group from our church. Even if my arthritis didn;t prevent it, and I am not sure how my rheumatologist would feel about going on a multi-hour rapids trip with 75% of both of my knee cartilages gone, my thrombophlebitis and coumadin therapy precludes me doing more dangerous activities like this. There are so many things I used to like I can't do anymore- tennis, horseback riding, skiing are the three I can think of that I enjoyed doing and now can't do because of either the arthritis or the coumadin and blood clots. Since I have been living with the arthritis for over 20 years and now the blood clots and coumadin for two years, most of the time I am just grateful that I am still alive, still walking, still able to do a lot of things I enjoy like reading, gardening, coming her to this forum, etc. I am also grateful that I have the health to homeschool. BUt today, not only is it too hot to garden, there is an air quality alert again for people who are sensitive and that is me. So I am not supposed to even go outside since I have asthma that gets triggered by air pollution.

 

So my family will be eating a nice steak dinner, then rafting tomorrow and I will be doing things like laundry, organizing, and ??? I can't even go get my dinner for tonight until evening because of the heat and the pollution problem.

 

:grouphug: I am so sorry! Here's what you need to do while the family is away:

 

1) See that pile of laundry? Take a good, hard look. Now completely ignore it. Just for tomorrow, it doesn't exist. (If you absolutely must, you may do one load of underwear, so that no one has to go completely naked. The rest can wait one more day.)

 

2) Remember that any daytime high over 90 degrees is an excellent reason to have ice cream for dinner. Anything over 100 degrees, and it becomes mandatory.

 

3) Rent/watch on Netflix or Hulu a good comedy- and sit down and watch it without trying to do chores while you watch. Need help picking one? The hive is here to help! (May I start the recommendations with Waking Ned Devine and What About Bob?)

 

4) Remember to report back to the hive! :D

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