An "Average" Day

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.

Arising -

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.

 

Noon -

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 often difficult.

 

Afternoon -

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' !

 

Late Afternoon-

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.

 

Evening -

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!

 

Night - 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.

 

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