May 30, 20010
I think I may just have to live an old life, actually a much older life at a slower pace, a gingerly walk and question mark for every day. I may need to stop all the medications I take for my auto immune disease, Hashimoto’s Thyroiditis, and inflammatory disease and just live with even less energy, more aches and pains and even more inflammation. It wouldn’t really matter, I don’t think, because with all the medicines I take now, I still feel those things. I feel those things every day along with nasty side effects from the prescribed medicines. I am not drowning in the ocean, nor am I swimming powerfully, I am mostly trying to manage to keep my head above water. I am not depressed or suicidal, I am not happy or ecstatic, I am just living in a state of symptom to symptom, energy for an hour, napping, reading, napping and tired.
I don’t notice much improvement, if any, from the medications to begin with. Can I go from bad to worse? Possibly. Can I learn to adjust to that? Maybe. The lack of energy is probably the worst part, I can live with aches and pains and holding on to staircases to get up the stairs. But, when a beautiful day presents itself to me as a present, like today, I cannot live, not knowing what or if I can do anything at all. It’s not fair to me but mostly it is not fair to my husband and I feel bad about that.
It’s Sunday of Memorial Day weekend, the sun is shining, the sky is a pastel blue, the bountiful green oak tree leaves are swaying softly. Birds are serenading us with their sweet high-pitched songs. My husband and I had no plans for the entire day and he was up to doing anything. Go to the city? Go to a park? How about a museum? He was willing to do whatever I wanted to do and having my now familiar stomach ache (side effect of the medication) and being tired, I chose a nap. There was no back and forth discussion of which place to go or what would be more fun because of me. The bar is set so low that staying home sometimes is my only option.
I don’ t know what to do, other than go on one more expensive tour of doctors again. I will do it, I will try, for the last time. After that, I don’t know. I don’t say that with depression or despair, it’s an option I need to consider. I live a sedentary life now, truly, if I have two hours during the day that I feel energized it’s a good day. Lately I haven’t even felt that. I’ve been stuck at home, happy just to be alive.
Do I think it’s fair? Not really but I don’t think it’s unfair either. People live with far worse things. I find it frustrating and disappointing that I have lived life like this for the last three years. I awaken, each morning, with a question mark, to see if I feel better, but it hasn’t happened yet and I don’t see it happening anytime soon. Is it is better to deal with a new reality and no side effects than be stuck with the old one? I have no idea. What am I going to do? I honestly don’t know. I need help, more doctors, different doctors. no doctors? I am feeling a little overwhelmed and I think what I need the most right now is a positive attitude and plenty of of good luck.
Dedicated to my wonderful husband, Danny.
I wish I could offer up a solution. I wish I could do the “laying on of hands” to heal you, but all I have are my words. We all have our paths in life and struggle is part of the experience of being human. Unfortunately, some struggle more than others. I don’t know why that is, but what I’ve come to know is that with every experience we have-good and bad, we learn something.
I can tell in your words that even though you’re suffering, you are also stepping back as a third party and observing your pain. In doing so, there’s much wisdom to be found. There are three sides to every situation–yours, mine and theirs. You’ve certainly seen your side and your husband’s side, and through writing, you’re seeing things from the standpoint an onlooker. The onlooker is much more detached from the situation, not in a bad way. Sometimes, being detached from a situation brings along the clarity of an observer and with fresh eyes, you may find comfort from this perspective.
Like I said, all I have are my words. Words can be powerful when they come from the heart. So, from my heart to yours, I’m hoping you find peace in your physical body as well as in your spirit. Never give up …never.
you have more than your words. there’s friendship too.
I know it’s not easy living with chronic pain, exhaustion, and the frustration of not being able to do things: living life vertically instead of horizontally!
Hang in there! You could taper off the meds and see how you feel — there might be the option of going back on.
Explore the possibilities of alternative/complementary medicines and therapies; try yoga and massage; visit a naturopath or osteopath; practice guided imagery. There maybe alternatives to the drugs with side effects.
And, know that there are folks who care about you, healthy or not, and will support whatever course you choose to follow.