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Hanging with the Handicapped

What can I say about being mentally/physically disabled and chronically ill in regards to social outings? Well, not much, I suppose. At first having bipolar I was on and off a social butterfly, being completely outspoken and never afraid to approach or ask a question. I had my select group of friends to go out with until a lot of things changed in my life. My bipolar disease worsened, causing me to become reclusive. I was eventually diagnosed with ankylosing spondylitis, which created too much fatigue and severe pain on days to get out of bed or the house. I have since gotten the bipolar under control and feel more of a normalcy than in the past which is beneficial but my AS sadly seems to be having increasing flares over time and worsening pain when the flares come on.

So getting out of the house is a rarity unless it’s to a doctor’s appointment and when I do get out it’s very spontaneous which drives my family absolutely bonkers. I have learned to have to live spontaneously and even on bad days have had to reschedule doctor’s appointments only to aggravate offices without meaning to. You might think they understand but 8 out of 10 times they don’t and they really don’t care but I don’t blame them, they are a business too not just there for free. Maybe that isn’t compassionate of me but I have to see their point too, I suppose. I have three calendars I keep, one on the fridge, one in my purse and one on my desk and they are all to keep up with the multiple appointments I have for my whole family. It does get hard some months as we have many visits but we somehow work it out even if we have to move things to other months or cancel things altogether. You have to pick and choose what’s important to treat when you are sick sometimes, unfortunately. I love to spend the afternoon shopping with my daughter on those outings. This is my most favorite time of all but also my most trying and requires pain medicine for two days usually afterward, but it’s totally worth it. The quality time we spend together is something I will always cherish.

I wish I could be that social, outgoing, butterfly again but unfortunately I have had to change and well, I hate change but I am living with it.

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One thought on “Hanging with the Handicapped

  1. Adapting is my only way of surviving with chronic illness. Sometimes I liken myself to a butterfly that is in a cacoon waiting to break free. I also love Fridates with my daughter. On these special days we go out together for yummy foods. I too cherish this time together and like you wind up taking additional pain meds for a few days afterwards but it IS so worth it, like you have said.

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