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Health & Every Day Life

The health issues I have give me some days where I can cope and be productive, and other days are not pleasant, to put it mildly.

The main problem I have is that I have minimal control over when, or how severe my symptoms will be on any given day.  It is a constant battle for me to try to arrange my schedule so that I can get work and necessary things done, and have some semblance of a social life.  I’m currently failing miserably on all fronts and still feel exhausted most of the time.  (If you have never read about the “Spoon Theory” by Christine Miserando I heavily recommend you do)

When I commit to plans, any type of plans – from going to the grocery store, a doctor’s appointment, or a family engagement – it is actually a few days worth of planning and commitment.  One thing I try my utmost to do is always show up when I say I will.  Nowadays that just means I have to limit myself on how often I RSVP. The day before I need to have time to prepare.  There must be time to do a load of laundry if necessary, rest, make sure the dog is bathed recently, big rest, shower, rest.  If there are any things I need to pick up or do I must have them done and ready to go with time aside for naps as necessary.  Depending on the duration of the thing I am doing I need to be sure I have only had small portions of bland food during this day too, to try to prevent the worst of the gastrointestinal upset that is a daily part of my existence.  There are times when it takes me more than a day to prepare.  So when necessary in order to commit to one occasion I am actually committing to several days of my life.

On the day of I must have time to wake and care for the dogs, rest, get my hair and makeup done, a quick rest before I get dressed and gather whatever is needed for me to bring along.  At this point, my arms and legs may already be trembling from fatigue.  If I do not have a driver, I may have to rest before I leave.

Once I have arrived there is usually a nice energy surge from excitement.  I am very happy to be out and about, even though it is tiring.  I have to be careful to choose wisely between standing, or sitting on particular chairs.  Standing is less painful than sitting for me most of the time, and certain chairs are hard for me to get up out of.  I have to gauge the people around me as best I can so I do not stick out awkwardly too much by choosing to stand versus sitting down.

Outing With A Service Dog

If I find myself slurring, not completing sentences or stumbling, I know I am getting overly fatigued, and should get going if I am to have the energy to drive safely.  This can be a couple hours, or a couple minutes after I arrive.  I used to try to extend time with caffeine, but it made me more shaky.  Extra pain relievers do not work once I’m past a certain point, and serious pain killers or muscle relaxers are out of the question if I have to drive, or do not want to appear intoxicated.  Departure is imminent by this point, I just want to make it as gracefully and discreetly as possible so I do not have to explain to anyone how tired, or how much pain I am in.

At home I stumble in and let the dogs out to play immediately, before I lose momentum.  Once I am back inside, I’m going to be laying down.  I may not be able to get up again until the next day, even if it is relatively early in the day when I return.  The next day I have to begin slowly, and try to stretch out tired muscles that seem to weigh twice as much as they should.  Grace usually has to bring me medicine these days before I even attempt to rise.

This is what life is like with chronic pain and fatigue.  If it cost you so much time and energy to spend time with people, who would you choose?  When something so simple as a shower can drain so much energy that a nap afterwards is not uncommon.  I know for certain I am much more selective than I used to be.

It does not mean I do not enjoy going out!  It just means I understand there is a price to pay, and I have to accept the fact that I will get whatever length of time I get – no matter how carefully I plan, and try to save energy to spend on what I wish for.  It’s like putting money in a purse that has a hole in the bottom but sometimes you can save a little pocket change.