A REAL Inflammatory Arthritis Awareness week

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I’m frustrated today, as I often am, with my inability to keep up with the general tasks of life. I am forever playing catch-up, because I only have four upright hours a day (on a good day) and I need to achieve everything that needs doing in those hours.

This is, of course, impossible.

And so often I am asked “What do you DO all day?”

Because people know that I no longer work, that I am on disability but they do not understand that disabled means disabled.  Tricky that, right?  On some superficial level they know that I live with severe, constant pain and overwhelming fatigue, but they do not truly understand this.  As proven by the comments they make and the questions they ask.

My close friend who has known me for years asks me again whether I have binge watched “Girls” and snorts in derision when I tell her that I haven’t had time in the last six weeks to watch even one episode.  Watching TV takes concentration, and when I am exhausted (often) I can’t concentrate on plot lines and character arcs.

Another friend who has come over for a wine comments when I stand up and lose balance and fall against the wall for support “Oh my god, are you THAT drunk?  You’ve only had ONE glass of wine!”

No, I’m not drunk, I have severe rheumatoid arthritis and a bolt of pain ran right through my body, and I lost my balance.  No…not drunk.  As you should know…

And so it goes…little bits of proof whenever I talk to people that show they really have no idea what my life is like.  That they believe I sit on the couch all day eating popcorn and watching TV.  I mean, clearly I don’t clean the house, or even try to, because it’s a mess!  So, yeah…I’m kinda lazy, and slack and a couch potato.  And that I choose to be.

These days I mostly let those things slide off me.  But some days that attitude just pisses me right off!

So with World Arthritis Day having recently gone by, and me still recovering from the events of that day, today I was thinking, what if we had a REAL awareness week for inflammatory arthritis?  One where people had to live with elements of arthritis, so they could truly understand what life is REALLY like for us.

There would have to be rules.  I propose these:

  1. You only have FOUR hours a day within which to achieve everything you have to achieve.  That includes showering, dressing, personal care, feeding yourself and others, EVERYTHING!
  2. Any task that involves standing up, you may only spend 30 consecutive minutes performing.  After that you MUST rest for at least an hour.
  3. Any task that you are able to do sitting down, you may only spend 60 consecutive minutes performing. After that you MUST rest for at least an hour.
  4. If you go to work, go out to eat, shop, wherever, you must be home BEFORE your four hours for the day is up.  If your four hours is up while you are out, you will not be able to drive yourself home. You will have to call a friend or a cab.  So plan your time wisely!
  5. If you need to do a full grocery shop, you will need someone to help you OR you need to stop and rest half way. (It is impossible to do a full shop in 30 minutes as you would be in too much pain to achieve it in that time.)
  6. When your four hours is up for the day, it is UP. You can do nothing more. You may watch TV.  You may not do anything that requires concentration, e.g. paying bills online, doing research, doing any kind of intellectual work because you are too exhausted.  Fatigue is a huge part of inflammatory arthritis and it is mental as well as physical.

You need to do this for a full week, seven days, and then you will understand why my house is a mess, why I am always behind, why I can’t even binge watch TV programs.

To make it even more fun, I’d love it if you wore my Chronic Pain Suit  to give you an idea of the physical sensations I live with daily, which also impact on my ability to get things done.

Best of luck!

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