Its probably pretty hard for you to imagine what its
like to live with a chronic illness unless you happen to live with someone
who has it. This is the short version of what an 'average' day is like.
This is NOT a "bad" day nor by far one of our worst days but
what I'll share here is what the usual mediocre day is like for someone
with CFS, FM and MCS. Honestly I'd have a hard time putting into words
what one of 'those' days is like. So follow me through one day.
I've been up several times
already but not gotten out of bed. Each time I awoke it took me
a while to get back to sleep again. Now I'm hurting too much to
stay in bed any longer and besides guilt sets in and tells me that
'everyone else' is up by now so I should make like I'm ready to
start my day too. Typically for me this hour is much later than
most get up but that's because I just finally fell asleep a few
hours ago, usually after 2.a.m. I don't take medications as I'm
allergic to most of them but most people with CFS and FM have to
start their day by taking some pill in hopes to dull some of the
aches and pains. Many of them are feeling hung over from the medications
they had to take to get any sleep at all. Often I feel half way
OK for the first little while I'm up---just long enough to get the
false impression that today may be a good day. But sometime within
the next hour I find myself crashing again. I do the usual morning
routine and head out to turn on the computer.
The computer and the internet has been my lifesaver in many ways.
It gives me something I can manage to do for periods of time and
allows me to have a much needed social life too. I keep in touch
with family and friends, find information on the internet and sometimes
even manage to do some work. I think everyone who is stuck at home
like this should have a computer. It should come with the illness!
:) Typically I start my day by checking email and seeing how I'm
feeling so I can decide what to do next.
Sometimes its a struggle to do lunch.
I have to figure out what I can eat that won't trigger off some
symptom I'd have to deal with for the next few hours to couple of
days. When my brain is already fogged sometimes that's hard to do.
I do much better in the evening hours so this time of day is most
I've been up for a little
while now and have a clue what's hurting. For me its often my back.
I feel like I should be doing something so I make it a point to
do one of the many chores I struggle to get done. Its not that I'm
lazy mind you, its that everything seems to take so much energy
and I have so little of it I have to prioritize things a lot. I
usually start by working in the kitchen. I'm blessed with a husband
who cooks but I do all the cleanup chores in there. I'm upset looking
at the floor I mopped yesterday and seeing that it looks like I
never touched it. People will surely think I'm an awful wife but
if I do it again today I won't have any energy to get to the bathroom
and clean it. But those are only a few things on my list that needs
done and I know I can't do them all. I feel rather discouraged by
my efforts as I can do so little at a time that the whole house
is never clean at the same time, only bits and areas of it are each
day. But I also should be working and if I put too much time into
these things I won't be able to do that. I have to pick and choose
which areas of my life I'm going to let slide knowing all the while
that healthy folks would never understand and assume I'm just a
slacker. If only they'd have known me in my 'other life' !
Well I did it again. I did too much
and now I'm worried because I know I have to get to the store somehow.
We're out of some groceries and it won't wait. I'd lay down for
a while if I could (may have to) but I SHOULD be working on a job
and SHOULD be doing oh so many other things I've had to put off
on other days when I was hurting too much or reacting too strongly
to something to do anything but lay down. Ok so I'll try to work
an hour at the computer and hope it doesn't aggravate my already
painfully spasming shoulder and worsen the bad kink I have in my
back. At least I'm not looking as bad as my husband with FM looks
right now. He's sort of weird colored in the face and blotchy, looks
like he's sweating again which means to me that he's in great pain
and the meds aren't helping at all. I'll work on this for an hour
and then I just HAVE to go to the store and do shopping.
I just can't drive to
the store today. Husband will have to take me. Sometimes I can't
drive because its like my mind and vision won't keep up with the
movement around me. I was told that our eyes are slow refocusing
just like everything else seems to be so slowed down. I have the
same sort of problems in stores. All the lights and bright colors,
scents and activity send my senses into overload which in turn makes
me have problems concentrating. Noises can do that too. How much
they bother me depends on the day. I shop at a small store which
isn't lit so brightly where I can get in a grab things and get out
fairly quickly as long as there isn't a long line at the check out.
I can't do big stores at all. But hey, this is an improvement over
a few years back when I couldn't go into a store at all!
Oops! Big mistake! The lady at the checkout line behind me is wearing
a fragrance which is triggering a reaction. I hope I can get checked
out fast enough and get out of here before it gets bad. My throat
feels dry (it always does but is drier yet) and feels like its tightening.
Ok so this reaction at least isn't causing the acid burn feeling
that typically comes before my throat swelling up making it difficult
to breath at all! I'm getting very spacey and 'out of it' I feel
like heading out the door and forgetting the groceries but then
my daughter wouldn't eat. Some people think these things are 'nerves'
or a panic attack but its not. They're a bit different and there's
no method of 'calming down' that will alleviate them. Some chemicals
make all my muscles going into spasm or go suddenly very weak. Most
of them affect my brain function which is bad because then I forget
to get away fast! Or I can't find the door out. I hate being ill
like this and having people assume that all I need is to learn how
to cope! If only they knew just how badly I'd love to go in the
backyard and play ball with my daughter or go for a walk or hey!
what about a vacation! Many years of this illness have taught me
that in order to keep the level of health I have I must avoid certain
things and not overdo. Otherwise I may end up in bed for weeks at
a time.Just this brief exposure at the check out will mean the next
several hours my respiratory system will be irradiated, my brain
malfunctioning and afterwards I'll feel very wiped out. So how will
I get anything else done today?
|After Dinner -
Its a good thing hubby
likes to cook and is able to sometimes because tonight I was likely
to burn boiled water! I spent several hours wishing I had a brain
that worked while trying to get daughter taken care of for the night.
I wanted to check email again but hey I couldn't read it anyway
so let it go for now. At least I'm not in pain tonight like hubby
is. Sometimes his hands won't work to hold a kitchen knife too long
and his hips are constantly hurting. The little bit of work I did
at the computer today did aggravate my back and now the pain from
it is radiating around into my chest. Many people with CFS/FM get
to feeling like they're having a heart attack, at least the first
few times they have this kind of pain in the chest. Its quite unnerving.
I feel totally exhausted, like I'd run around a track a few times
while wearing galoshes with pounds of mud on them yet I've hardly
moved at all. Don't tell me I need to exercise more or I'm libel
to smack ya! I tried to do more once and wound up in bed for a month.
It took a very long time to recuperated from that overdoing! I've
since read where pushing it like that can actually permanently worsen
the illness and hey, I sure don't want to be worse! It took me this
long to learn how to keep this level which sure isn't the greatest.
I probably function at less than 1/3 you do if you're about hmm
58 yrs old. Its really discouraging to watch old ladies walking
down the street faster than I can if there was a fire! Some days
I'm very envious of them!
||Its late and I'm still up. I never did
get around to doing anything for me today. Didn't get to really rest
yet sure didn't get much done around here either. The reaction is
finally starting to subside. My heart rate has probably been alleviated
for hours. No wonder I feel tired! Yet I can't get to sleep. I'm aching
too much. It was either an elephant who walked all over me leaving
me feeling bruised hurting all over, or some big bad invisible bully.
Whatever it is now my back and neck are hurting me to distraction
so getting to sleep is not going to be easy. I do my bedtime rituals
hoping that will help. Perhaps a good movie? But hey, this was a very
good day for me so I have a lot to be thankful for. I didn't have
some of the symptoms I had yesterday or should I say they weren't
quite as noticeable and I wasn't flat in bed and I didn't have one
of those horrible headaches. I don't have the chronic sore throats
anymore and I could breath. These are all good things. Perhaps after
I finally get to sleep I won't wake in three hours and will finally
have some rest? I'm not lazy really. I'm just very tired. As they
say don't judge me until you've walked a mile in my shoes. Thing is
my shoes wouldn't take you a mile....
I'm sure from my example you're probably thinking to
yourself, "well gee, I feel like that some days too" The difference
is for you that would be a 'bad day". What I just described would
be one of the best days I've had. You also may think it sounds like
whining or feeling sorry for myself. I assure you its not that either.
I know I have responsibilities to others, my husband and my daughter
and I know that if I'm going to be able to do anything for them I must
pace myself. I know this because for the first 10 yrs I was ill I kept
pushing myself and kept winding up in bed unable to move if my life
depended on it. Well I sure don't want to do that again. Then I wouldn't
be able to do anything for my children. So I found what my limits were
and try to stay enough under them to maintain the level I'm at and not
get any worse. I didn't mention all the little symptoms I have daily
that I try to ignore best as I can. I didn't mention all the things
I had to avoid being around in order not to have additional symptoms.
Nor did I mention things like having to put up with someone else's assumptions
about me again. Unkind thinking, very judgmental and sadly all too frequent.
We live in a world which values above all else, productivity.