Planning

The Question of the Week at Oh My Aches and Pains! is something that's come up quite a bit lately in my life: How Do You Plan for Special Events?

'Tis the season, as you know, and I've been trying to socialize with my family and friends as best I can. I'm also going to school and still riding the doctor-hospital merry-go-round. Frankly, I'm busier than someone with my health condition should be. I've mentioned before that people don't fully realize the planning that goes into my life, so I'm going to give you an example.

A few weekends ago my family and I went to the Jack O Lantern Spectacular at Roger Williams Park Zoo. Planning for this event, I knew a few things: it's a walking trail; it was outside; it would be chilly. The first thing I did was tell my family that I couldn't participate in any other events that day otherwise I would use all my energy prior to walking the trail. The second was to plan to dress in layers so as to stay as warm as my body needed to be so that the temperature wouldn't exacerbate my symptoms. The third was to spend the day before and day of the event resting. I slept as much as I could, I napped, I stayed sitting or lying down.

During the event I walked slowly and sat down as often as I could. Sometimes a family member sat with me, sometimes I sat alone. Everyone knew approximately where everyone else was, there was no rush. Because of other complications we didn't go to dinner afterward, as we had planned, but that worked out well for me because I was far too tired by that point.

I also knew that going to this event would make me extremely fatigued afterward and would lead to an episode of post-exertional malaise within the next twenty-four hours that could last for another twenty-four. This meant I had to do any assignments, chores, errands, etc., prior to Friday because it was likely I wouldn't be able to do anything at all until Tuesday. Not unexpectedly, I was sound asleep not long after we arrived home, was tired all Sunday morning and early afternoon, and by Sunday afternoon the post-exertional malaise had set in and I was in pain and exhausted (and asleep!) well through Tuesday.

Bet you didn't realize a few hour trip to see some pumpkins actually took four to five days of my time, did you? That's how it is for me with CFIDS/ME. And it's exhausting.

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Planning for chronic illness' ups and downs.

A healthy person can “push” himself or herself even when tired or even sick. But someone dealing with an illness cannot “push” anything without dealing with the consequences if they can even “push” at all.

I think what makes it truly confusing for those surrounding me or anyone living with a chronic illness, is that there are days when you feel like you could run a marathon. I look great, I have a smile on and I do more than most! Then as quickly as the energy came, it leaves in a flash, and you are left with nothing. You are completely depleted of any ounce of energy you had and are left with pain in its place. It is like living two separate lives, and it is so hard to plan your life according to an unknown schedule. You need to learn to accept help, even when you don’t want it. You have to learn to always have a plan B, and be prepared for the worst, while remaining positive and hoping for the best. It’s a difficult balancing act.

[My Roulette Kind of Life]

 

I was thinking about leading this kind of life as I looked over my Facebook Events this morning. All my answers are "maybe" because I just can't make promises. I never know from day to day how I'll be feeling.

Luckily, for the most part, my friends and family understand this. But even with that understanding it's still difficult for me to have to say maybe. I wish I could commit to things in advance and keep those commitments. I want to do things. I want to attend every class and be the life of every party but some days I just can't.

It's just as hard for me to understand as it is for those with their healthy perspective who are looking in from the outside.

Filed under  //  planning   social life  
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