What is it like to have a Chronic Illness?

Having a chronic illness, visible or invisible, impacts the everyday life.  While chronic illnesses vary I do think that they have all one common denominator: lack of energy.  Every person has suffered some type of illness at some point.  We all know that when you have an infection or a virus, your body works overtime and as a result you are less energetic. You call in sick to work, you sleep longer, you take some medication and hopefully feel better in several days to several weeks.  Now, hang on to that tired sensation and stretch it over two months, two years, two decades....  What would that mean for your life?

Let's see if I can break this down a bit further for you.  Let's say that the normal person has 100 energy dollars (ED) to spend each day.  By the time you get home from work, you have spent 60 ED. That leaves you with 40 ED to do with as you would like that night.  You make your dinner (5 ED - lots of chopping!), you do some laundry (20 ED), take out the trash (1 ED).  Other nights you might go out to dinner with friends (30 ED).  You go to bed each night and apart from minor illnesses wake up with 100 ED to spend the next day.  Minor illnesses take varying amounts of ED, but you have sick days so you can call in sick when work would be too much.

All those crazy symptoms that the body of a chronically ill person's puts out are often bad enough. However, those same symptoms also consume ED.  The body needs energy to put those symptoms out or to compensate for a deficiency in the system.  Medications to control symptoms often also consume ED.  So some medications are worth the energy cost and some are not.

Depending on the severity of my chronic illness I can honestly say that I have had as little as 30 ED to spend on a day. When I was working full time, I generally had about 65 ED to spend on a day.  My family needed my income so that meant that I worked and really did nothing else.  Some days at work took more energy than I had.  It times of fair health I could then borrow from the next day and just hope to make it to the weekend.  Eventually I borrowed too heavily to meet the needs of the current day or habitually borrowed over a long period of time.  Weekends would then become inadequate to make up that deficiency.  I would then use my vacation time to simply stay home and rest.  Nearly all of my sick days were used simply on the most extreme manifestations of my chronic disease.  Medical leave became necessary several times.

Additionally, I had a reoccurring commitment on Thursday nights after work.  In order to attend that event every single week, I had to get permission from my boss to work a later shift on Friday.  Sometimes I simply could not borrow ED from Friday and would have to miss the Thursday event even with this compensation.

For all of you saying that clearly I was a poor employee, ask my employers.  I was still routinely promoted, recognized for excellence of work routinely and at review time, and doubled my salary in six years at the same company.  I spent all my ED for the day at work and my family had to take care of the other things that needed doing at home.  Sometimes I had some ED to help out, but those were definitely exceptions.

But, I was not lazy.  I was not taking advantage of someone else.  I simply had nothing left to give that would not jeopardize the income needed by my family.

I no longer work outside of the home but instead stay home with my children.  What does that mean for my day? Certainly I have much more control over my daily activities but do spend much of my ED on caring for my sweet blessings.  On the fair days, we are busy in the mornings and more sedate in the afternoons.  On poor days I orchestrate instead of participate.

The guilt, though, and the longing for a normal amount of ED!

I do hope that this glimpse into my life has blessed you in some way.

Low Histamine Italian Pork Tenderloin

Here is a recipe that our family has enjoyed that is easy to make, tastes wonderful and is also low histamine.

Italian Pork Tenderloin

By the time that I thought to share this recipe with you, this was all that was left of two lbs of pork tenderloin. Everyone in the house loves this.

Ingredients

2 T Italian Seasoning

1 t garlic powder

1 t onion powder

1 t salt

1 t black pepper

~ 2 T Olive oil

2 lb pork tenderloin

Preheat oven to 400 degrees F.  Mix the first five ingredients in a small bowl.  Coat the tenderloin in the olive oil.  I do this by pouring the olive oil in my baking dish and then rolling the tenderloin in it.  This also then coats your baking dish to prevent sticking.  Next, rub the seasoning mix all over the oiled pork tenderloin. Roast the pork tenderloin until a meat thermometer inserted in the center of the tenderloin reads 160 degrees F.  Let stand for about ten minutes before slicing. 

This serves eight 3 oz. portions.

If you are sensitive to any of the seasonings, sub them with other ones.

What I learned during our two week trip

1.  It was a very good idea to pre-medicate myself starting two weeks before we left.  I generally only use antihistamines when above my baseline symptoms.  I knew, however, that I would have minimal control and diet options while not in my own home and that nearly everyone else uses fabric softener.  So, I started on a 24 hour antihistamine that has worked well for me in the past (Claritin).  I already knew it worked well for me, especially a doubled dose supplemented with Benadryl that I could move to if necessary.

2.  I prepared ahead of time for the need to increase my medication.  I packed lots of medication and supplemented immediately upon escalation of my symptoms.  I always had extra medication in my purse which was with me at all times.  I started with the quick acting medications (my inhaler with any lung involvement and Benadryl for everything else) and actually did not need to move to a double Claritin dose.

3.  I went on this trip with the understanding that I would be unable to control my diet and hence made wise decisions when I could do so (say a salad instead of a sandwich) but did not stress or go without eating.  If you have significant food reactions, this might not be good advice for you.  I seem to be much more sensitive to the environment and things that I inhale instead of food that I ingest.

4.  Since my weight is often the first indication that my body is stressed I did pay attention to that.  After just three days away I had lost several pounds, completely lost my appetite and people commented that I didn't look well (too thin).  I then intentionally ate more food and ate until the physical sensation of FULL instead of the normal loss of appetite when satiated.  I really dislike eating this way but needed to do so to give my body the nutrients to keep functioning.  I did enjoy eating the higher calorie foods but also went for nutrient dense items.

Some of the weight gain I experienced was inflammation weight.  That started to diminish when I was in a more suitable environment and has continued while I have been home.  So, I've lost at least four of those pounds the last four days.  I will continue to monitor the weight loss to make sure that once the inflammation weight is gone I am still at a healthy weight.

5.  Prepare for a rebound effect upon reaching home.  The first full day home had me almost in the ER.  The rash on my hands dramatically worsened overnight and itched like never before.  It was miserable.  If extra antihistamines and topical steroid treatments had not worked I'd have gone to the ER for itching.  I have never contemplated immediate care for itching before in my life.  This was at least a seven on the itchy scale. Baseline itchiness for me stays around a three.

I took a picture after the rash and itching had calmed down that day.  I could barely function let alone think to take a picture when it was awful.

This really took my by surprise but the more I think about it the more a flare in a safe place makes sense.  I wonder if the constant go and craziness of two weeks of travel from place to place had more adrenaline present in my body?  Could the sudden loss of that cause something like this?  Or could it just be that my mindset of keeping things cool while travelling prevented a significant flare until that mindset was no longer needed?  I'd love to hear your thoughts on this.

Now that we are home again, we hope to move to a high nutrient diet that is also wheat free for the time being.  I hope to be able to spend more time researching MCAD as well so that I can continue to share about that with you all.