Two days before, I had had the energy to go to up to our attic six times in a row. I was doing fine, so why didn't I have any energy now?
The answer -- I have little perception of how tired I really am becoming. I get so used to being tired that I don't notice how I am really feeling. I don't expect to feel rested. I don't even remember what "rested" is, so I just keep going and do what I think I must, should, or want to do. I don't stop until my body finally quits. I think I am "better now" and "can do it". I tell myself that everyone gets tired. That is true. Everyone does get tired, but I start at tired and take it to lower levels. I am having to remind myself that dragging myself from room to room, feeling nauseous, having blurry vision ("so tired they couldn't see straight"), coldness, shakiness, and staring blankly are far beyond normal "tireness". It is exhaustion.
Having Addison's disease, my adrenal glands can not make the cortisone my body needs to respond to the stresses in life - cold, heat, exertion, illness, injuries, and mental stress. I think of it like other people having a steady flow of energy to meet whatever comes at them, while I only have a drip. Any stress on my body will take days, weeks, or even months for me to recover from and be back to where I was before. People that have healthy, functioning adrenal glands will quickly make the necessary adjustments in their body to cope with increased needs for energy, oxygen, and to adjust temperature. My body in unable to do this. My body is only able to cope with whatever stresses the 30mg of hydrocortisone I take each day can handle. I will never be "better" any more than a diabetic gets better and can eat whatever they want. I will always have to carefully monitor the stresses in my life. I will always be limited in what I can do, but if I manage my condition well, I can feel pretty well. I must remember that feeling better does not mean that I am better, only that I am managing my health better.
Does this mean that my outing was just too much for me? Does it mean that I "over-did it" again? No. I had been going on outings of about this level for months and had felt fine afterwards. Why did I collapse after this outing?
Here are the factors I did not consider.
Allow for Basic Stresses
Like someone who ignores basic home expenses and spends all their money on a vacation, I was ignoring my basic stress level and doing what I wanted; doing what was fun. I have been reminded that I must consider what daily stresses my body must cope with. I have a severe jaw injury, dislocated rib, dysfunctional hip, many allergies (food, pollen, dust, mold, medicine), chemical sensitivities, cell, intestinal, and nerve damage, and a heart murmur. Of course the pain and restrictions cause emotional stress. I also have to deal with being a sensitive, creative person who wilts when confronted with routine details.
So how much of my 30mg of hydrocortisone do I really have to deal with life? Probably, not very much.
Allow for Other Stresses
Beyond the basic stresses I also much considered other possible stresses.
- Extremes in temperature are draining. Is it very cold or hot?
- Evening events are more tiring than mid-morning when I'm are more rested
- Exercising when my medicine is low will be more tiring (early morning, evening)
- I will feel more stressed when I am under pressure to do something.
- Negative people will be draining.
- Deviating from my routine can be stressful, especially eating times and bedtimes.
- Trying to do something I don't like or aren't good at.
- Taking on more than I can easily accomplish (remember we have a nearly full slate just dealing with our illness)
- Sad or thriller movies, news, or books can be emotionally overloading. (relax before bed)
- Strong emotions will drain you; worry, excitement, fear
- The longer you do something, the more tiring it will become (exercise, commuter work etc)
- Traveling will tire you; noise, exhaust, packing, changes in routine, new things (can be good but still stressful), things whizzing by, connections and finding your way, etc
- Climate stresses; sun, rain, wind, snow, ice, darkness, glare, electromagnetic fields, odors, colors, be jolted and shaken, hard seats, chemicals, humidity, dryness, sanitation
- Illness and injuries
- Job, financial, health, and relationship stresses
Notice How You Are Feeling
I wish there was a gauge or monitor which would tell me just how I am doing, how much adrenal reserve I have left, but there isn't. I have to think it out. I also pray a lot for help. Here are some questions to ask:
- Are you tired the morning after an activity?
- Are you getting more tired after activities and taking days to feel up to doing things again?
- Are you taking longer and longer to recover from doing small things? (dust mop etc)
- Do you drag all morning until your medicine gets up to level?
- Are you tiring earlier in the afternoons?
- Are you very dozy all afternoon?
- Are you more tired in the evenings?
- Are you more tired during the day?
- Are you constantly pushing yourself to get things done? (this is my greatest problem)
- Do you feel more achy? shaky?
- Do I feel cold especially my feet?
- Are you having more trouble thinking and remembering, especially in the mornings?
- Are you losing your appetite?
- Are you suddenly feeling that you have to eat? (blood sugar dropping)
- Do you have to eat every couple hours or you feel sick?
- Are you having gastronomical problems such as heartburn and gas?
- Are you having more headaches especially in the evenings?
- Are you having trouble getting to sleep and staying asleep?
- Are your muscles twitching, or are you having mild cramps during exertion?
- Are you having trouble holding focus while reading?
- Do things upset you more easily?
- Do the things you used to do now seem overwhelming?
- Do you feel a little "draggy", or depressed, or just maybe nothing sounds fun?
- Are normal things seeming harder to do?
Remember Stress is Cumulative
It is like the old story about putting the frog in the pot and slowly heating it up. The frog will not jump out of the pot. I don't either. Stress is cumulative. One day I stay up a little late. Another, I push doing details for several hours on the computer. Another day, I eat lunch late. On and on it does; day after day. I think I am doing fine; after all I have energy and feel pretty well. I think each morning that I have fully recovered from the stresses of the previous day. I feel about the same, so I continue each day taking out more than I am putting in (my 30mg). Finally my reserves run out, and like a car running out of gas -- I stop. If you don't look at your gas gauge (frequently analyze how you are feeling), you never notice anything, and you keep going, doing what you want. You feel fine until suddenly your life simply comes to a sudden stop.
My problem is that the more tired I become, the less I notice that I am tired, and the more I think that I'm "fine". What do you do when it is so easy to slip almost imperceptibly into exhaustion? That is what I have been asking myself. Looking for signs of stress is a good idea, but as I become numb with exhaustion, I don't notice how I am feeling. I've decided that I have to put up some guardrails to protect myself. For me this includes things such as:
- Eating balanced meals on a regular schedule
- Getting in bed before 11 pm
- Getting enough sleep at night
- Soft comfortable, all cotton or silk clothes (I'm allergic to synthetics)
- Avoiding allergens (chemicals out; just lots of wood, cotton, metal, and glass in my home)
- Taking medicine for my allergies (allergy drops)
- Eating organic foods and drinking filtered water
- Avoiding sugar (I can't handle the rise and drop in blood sugar)
- Avoiding being near electromagnetic fields (my computer is behind glass)
- Resting in the evenings (no work after 5 pm)
- Delegating details to my husband (he is so helpful)
- Resting when I feel tired; do something relaxing
- Doing the demanding things in the morning (hour or so after taking my medicine)
- Only doing tiring things for a few (maybe three) hours a day
- When my "work" time is over, I'm done and relax
- Relax a lot in the afternoon and do things I enjoy (study, think, research, visit, order online)
- Get up and walk around every half hour
- Exercise short couple of minutes at a time; don't try long walks
- Short Outings (instead of all day events, go for short relaxing walks by the river)
- Take time to enjoy nature, birds, music, a hot bath, sunlight, uplifting books and videos
- Don't commit to doing things at a set time (I may not feel up to it)
- Wear sunglasses outside (I have cataracts and there is glare in bright light)
- Do something for others each day (within my limits- I volunteer and answer feedback on the huge website for the Church of Jesus Christ of Latter-day Saints lds.org)
- Do things each day I enjoy and am good at (I like to write on my blogs and study)
- Spend relaxing time with my husband (we enjoy sharing our day, running a business together, reading and watching videos together in the evening)
I think if I do these things each day and take the time to consider how I am feeling, that I will be able to avoid becoming exhausted. I am getting better at this. It took me a few years this time to get to this point. I have hope that this will be my last time.