Wednesday, August 8, 2012

Being Sick Can Be a Full-time Job

I haven’t had the chance to write any posts for quite awhile.  Sometimes being sick can be a full-time job, and this year has been just that.

You know you have a lot of medical appointments when you have trouble scheduling new ones because your calendar is full of other appointments. I also had my social security disability hearing added to the mix, and all that went along with that.  And of course, with all that was going on, if I wasn’t at an appointment, I was recovering from one or preparing for another.

Being chronically ill and out of work, we often hear comments about lying on the couch all day.  Sometimes others say they are jealous, sometimes jokingly.  What they don’t realize is that we spend our time surviving, not relaxing and enjoying ourselves. 

Sure we try and enjoy what we can.  If we don’t, we might sink into depression or lose our minds.  We may literally schedule time to relax, because otherwise the buildup of tension can cause symptoms to flare up.  Still, most of our time is spent just trying to get through the day.

I kept track of how much time I was spending doing what in preparation for my disability hearing.   The amount of time spent doing things such as attempting to get out of bed and taking medications amazed me. 

Often, it takes up to two hours for me to manage to get out of bed, between being unable to stay awake, even after a full night’s sleep, and having to proceed slowly due to POTS symptoms.  Then I need to take my medications—lots of medications. 

Eating is exhausting.  Brushing my teeth is exhausting.  Taking a shower feels like an Olympic feat.  All of these things require lying down afterwards, adding to the amount of time it takes to do these seemingly simple tasks.

So, yes, we may spend much of our day lying in bed or on the couch…because we are recovering from those simple things that healthy people do without a second thought.  Needing to lie down to recover from these things is not fun and is often frustrating.

If even I didn’t realize how much time is spent preparing for, doing, and recovering from simple tasks, it is no wonder that healthy individuals have trouble understanding it.

What do you wish others could understand about living with chronic illness?


  1. that I am not a slob or hate to do housework, I can't ! It takes more energy than anything else I might do and it just doesnt seem worth the being down for days after for even simple things

  2. On days when I feel well enough to do house work, I find that I have brain fog and can't figure out what to do first.I wander from room to room picking up stuff and getting sidetracked. I did not used to be this way. My home used to be spotless. Now, I give things a lick and a promise and hope that will get me by.
    I am a nurse who hasn't worked since the end of Jan. I applied for disability 4/19/12. How long does it take?

    1. Linda, it depends how backed up your local office is. I believe the average is two years. It took me a year and a half.

  3. I had my 2nd disability hearing in May the Judge was a woman she called me a Liar that being tired all day and I told her the hours in a day i sleep she said there was no way I could sleep that long, So she denied me again now Im waiting for the 3 Judge Panel to see if theyll over rule or send my case back to another Judge, If I can't even do my Housework without hurting me so bad how can I work a job and be successful at it. My House was always spotless too now it takes every ounce of energy I have to do it at all, I have been fighting for my Disability for 6 yrs. It took me 4 yrs to see a Judge the first time, then 1 yr to have the 3 judge panel send it back now Im looking at another 2 yrs for a court hearin. My Husband doesnt have ins so I cant even see my Drs and the Judge said well you only go when the need hits u, I said I can't afford to go, what do u do I go every 6 mo to renew my scripts and now The arthrits Dr wants me to go to a Fibro Clinic, I scheduled the day but they told me to bring 185.00 for the visit then it cost more for whatever they do. My Brain Fog is getting worse its bad when you start talking and can't think of the word at all. I feel for everyone with this.

    1. I’m so sorry to hear that, Kim. I’ve been lucky having health insurance so that I could have testing done that showed clear impairment. I can’t imagine having to go through as much as you have and still not getting approved.

      I hope you have better luck at your next hearing. I’ll keep my fingers crossed for you.