#54 - Acceptance Through the Exhaustion

Prior to developing Addison's, I would have a tired, dragging day. The sort of day most people experience when they are run down or haven't slept well. It's fair to say that it is a miserable experience for anyone.

But, after Addison's Disease became a part of my life, my level of exhaustion went to new, previously unknown heights that I'd never even imagined existed. When a person battles a bad short-term illness, such as with pneumonia, or a TRUE case of the flu that lasts seven days or with any other draining, sickness that zaps the body of all energy, then they might have an idea of what having Addison's exhaustion feels like. However, a short-term illness has a beautiful side to it...it is very temporary and will disappear so the old you can resurface.

A major difference with a chronic illness is that it impacts your physical capabilities on a regular basis - it is not an illness that will follow suit of the flu and just disappear. Chronic illness is just that, it is chronic. It is re-occurring and does not have a time-frame for its visit and it has no cure. You could say that bad eyesight needing glasses is "chronic." That person will wake up the next day and still need their glasses. Such is life with other parts of the body that are "out of focus." In particular, Addison's, can include pressing exhaustion combined with a general, overall feeling of unwellness and it can hit often and without warning.

When you have the flu, it royally stinks, but you can count the days and know that there is a light at the end of the tunnel. All those aches and pains and the exhaustion that comes with the flu will soon fade away. But, with Addison's, you take your meds as you should and make any necessary dosaging tweaks, but you cannot predict when a turnaround will occur. It can be as unpredictable as a blast of wind. Worse, you might suddenly feel much better only to have it bounce back on you just as suddenly to leave you in a dark pit of exhaustion again.

When I first was diagnosed with Addison's, I might get a good night's rest, but after taking my morning medication, I'd still find my body feeling heavy, weighted-down and sluggish. Even breathing would feel laborious. More than this, my mental sharpness would be dulled. My body would struggle to do the most normal things. When that exhaustion hit, there was no way to ward it off. This was something new to me. I tried everything to "fix" it. I would take extra meds, I would exercise more, I would rest more, I would eat differently, I would increase caffeine, I would avoid caffeine. I would pretend it wasn't happening.

I actually made a log over the first couple of years of having Addison's and found that when the exhaustion hit, there was simply no way around it. That is a side of Addison's that can impact some people more than others. Just as diabetes impacts some more than others; and the mysterious reason MS can be fast and furious to some people, while others have minimal symptoms; cancer can be an easy fight for some people as they go one round and knock it out while others go round after round and they get knocked out...life is not fair and disease does not manifest itself the same way in each person. I've seen the athlete get taken down in round one while the overweight, smoking, bad genetics walking disaster end up as the survivor. Does it always make sense? No. Again, life is not fair.

This brings me to my point of those with Addison's disease needing to truly understand that you may be doing everything right and things may not be right. You cannot beat yourself up over it. All you can do is your best. Since I've seen weird things with different people, I've been shocked multiple times to see the tables turn so fast, I learned to never tell a person who is intensely suffering from Addison's that there must be some "magical" solution to their health or that they must be doing something wrong to bring on their symptoms. I  have learned that you could be doing everything right and still might have major problems. This is why the book title "When Bad Things Happen to Good People" was such a hit. You can indeed be doing everything perfectly, but that doesn't guarantee perfect results.

As you get older, you see how life can teach solid lessons. Through personal experience, I've seen that my situation could rapidly change, even with the best of treatment. Having compassion for one another, understanding the seriousness of the unpredictable nature of this disease and knowing that each moment truly counts can make each of us a bit more humble and open-eyed to deeper truths. But, I do believe this disease has made me a stronger person, overall. On multiple occasions, I have teetered on the edge of life and been repeatedly given the gift to return; but this has altered my perspective. What had once been black and white is now infinite shades of gray.

On the opposite side, I still have days when I am so full of energy that it is bursting from me and I can't expend it fast enough. I am running on the inside and my body cannot keep up. Again, this can happen while taking my regular dosing schedule. When these days come, I don't complain, I take full advantage of it! Of course, I may have days that have both sides ---- the first part of the day might be filled with hours of dragging, but the second part might find me bouncing off of the walls. Regulation of my energy seems to have gone haywire, but I have learned to adapt. Flexibility is my middle-name.

A great day with my youngest daughter - 2010

After all of these years and experimenting with different medication patterns, dosaging and such, I was finally told by an Endocrinologist that this is a side effect of many diseases such as Addison's. The body's ability to metabolize energy, get solid rest, the muscles and joints might be affected greatly...so many factors. To top it off, these factors are constantly changing so the adaptation process might be exhausting in itself.

For the first few years of having Addison's, I had more energy to fight back. Then, I began to face other complications and those made the entire situation more challenging. For those of you who are suffering and doing your best to face each day with huge hurdles in your path, don't give up, keep going. The great thing about Addison's is that it can change for the better from moment to moment.

Overall, my life is rich, full, rewarding and I am physically strong. I've learned that I cannot give in to the feelings of exhaustion that might try to overwhelm me. Sometimes, I simply force myself to go through normal, every day motions, even if extremely difficult. I have daily goals I set for myself and one is to make my presence known each day. For now, this boils down to making a difference in our home. I can surely be one determined woman.

But, on those days when my body feels like a bag of weights that I must drag around, then I know I must listen and rest. I work on not feeling guilty when I am having a hard time reaching a stabilized mode with wacky blood pressure, etc., I now take a time-out when necessary and try to not be angry about this disease yanking me around.


However, it can indeed be frustrating, especially if my daily list of things to do is sitting there, staying undone. Through it all, I am constantly motivated to learn something new. I try to make the most of my down-time. Then, I take the short-bursts of energy and make them worth their while. When I am feeling energetic, I can be one little hurricane in action. That's how it works around here.
 
Since my body is so unpredictable, I go with the flow and make the most out of my good days. Sometimes, my husband is in awe at all that I am capable of doing, if the baseboards need re-caulking, he might come home to find it done. If a room needs painting, he might come home to a brand new, fresh look on the walls. I might scrub everything down and have boxes of Goodwill items waiting at the back door to be hauled off. There may be cut flowers from our garden sitting in a vase on the table. Most often, the house remains clean, my floors are my daily obsession and everything has a place of its own. I've found that having organization and cleanliness helps to make my disease maintenance less complicated. Now that my kids are grown, this is easier to accomplish.
 
If the house stays in good order, I feel better able to confront each day. If things get somewhat out of place, that's okay, but on my next good day, I'll be rushing around as fast as possible to do all that I can, as fast as I can to make a huge difference. I never know if the next day will find me physically strong and able to be very active. I grab at each opportunity. If not, I have a couple of good books next to me, my journal is nearby, I have my laptop, my cell phone and a sweet husband who stays in touch with me constantly. Last but not least, I have my dogs who are my loyal guards and companions. My life is definitely rich and full, either on a strong day or on a day with exhaustion. I've learned to appreciate every day, in whatever capacity I am finding myself. That's been a huge lesson for me in this journey of Finding Lana...acceptance.