A New Project to Keep Me Sane
An idea for a new project has come to mind so when I’m not here, I’m brain-dumping in Microsoft Word. The topic: helping others with chronic illness with the day-to-day practical barriers to living.
My career in occupational therapy included evaluating the daily “occupations” in the lives of my patients and the skills he or she needed to get through the day. Occupations can include homemaking, pre-driving skills, functioning on the job, and more. When the person was unable to complete the steps, tasks, and activities needed to perform those daily occupations then O.T. was offered. Treatment began during an inpatient hospital or rehabilitation facility stay and continued in outpatient or home care therapy sessions. I have had the privilege of working in all of these settings. My favorite was always home care. When you are working with a patient in their own living situation, the evaluation is often more accurate and the remediation more meaningful. This was my part time work when I became sick on October 11, 2011. Within a few months I was unable to continue. Since then the remediation has focused on my own home and health!
I am grateful for my 30 years in occupational therapy practice. The Lord led me to a profession as a high school graduate that would provide a fulfilling career my entire adult life. I enjoyed serving others in both psychiatric and physical rehabilitation settings, with adolescents to older adults alike. I have been with a patient just moments before she passed away and another when he realized that his disabilities would be permanent. To look into the eyes of someone about to lose their independence because of his medical condition and another who needs a little nudge to realize she is ready to return to work are equally humbling experiences. And these days when I look into the mirror, I have some of those same discussions in mind as I consider the challenges of my own life these days. Gratefully, I have a rich variety of experiences and resources upon which to draw. In many ways I have not had to struggle as much as my patients because of my training as an OT.
For example, I intuitively know the importance of planning ahead in the evening for the next morning. If I wake up with seizure attacks and my husband is alone, I generally have a plan in place to meet my basic needs in case I would be unable to leave the bedroom. The night before, I usually pack a breakfast with my a.m. medications, enough water and food (following my special diet) to make it through the first part of the day. Low blood sugar can exacerbate my symptoms so this strategy has become one of numerous methods employed to cope with my limitations of late. I am grateful to the Lord for the skills He has giving me, His help in my time of need, and His leading me to a profession that has allowed me to cope through many trials in my life.
So why don’t I see what I can do to help others with this knowledge? When I did a preliminary search on coping strategies, I found a great deal of resources on the topics of emotional, psychological, and social skills for persons with chronic illness. This was a great discovery and I benefitted from reviewing these blogs, articles, book reviews, and so on. But where were the day-to-day strategies for example, in preventing falls when dizzy because of a medication side effect? In my role as an OT, I could point to many disease-specific organizations that might have such resources, for example the Alzheimer’s Association or Multiple Sclerosis Society. This information is also easy to find within the disability community. But what about a person with Lyme disease? Sick building syndrome? A temporary illness? Persons with a serious, multi-diagnosis, ongoing illness numbers in the hundreds of thousands or more. I see them on Facebook forums, WebMD, and the like. I would like them to know that there are simple strategies to reduce their daily struggles, improve their ability to function, and in doing so also keep myself sane while on the path to healing.
We have a saying within the therapy profession that goes like this, “therapist, heal thyself.” While this is not entirely true, certainly a therapist can do pretty well at rallying some resources to get the healing process going. My hope is that by sharing some practical information with others I will not only keep myself sane as I write but also gear myself up for returning to a productive life someday soon. The complications of my own illness make it difficult to concentrate, use various thinking skills after several episodes per day. The challenge of writing, editing, researching, and publishing my first eBook did help fire some neurons in a meaningful sequence here and there! I’m thinking I’ll try it again.
If this resonates with you, please let me know what you would like to see in such a handbook. The current outline begins with the morning of a typical day and continues through all of the activities of daily living until bedtime. I will include information on fall and injury prevention with references for sample adaptive equipment, such as a sliding tub transfer bench or automatic night lights. Many of us will be familiar with parts of the information. My hope is that by systematically reviewing a person’s typical home environment that there will be new insights: a little something for everyone and his or her caregivers. I have seen the power of a simple strategy in making the day a little brighter in the life of a person battling a serious illness. Maybe this will even lead to a forum where there will be an exchange of information as well. I am looking forward to the possibilities . . .
Forbidden Fruit
It’s everywhere. I look in one area then into another and I cannot avoid seeing it. I go to the store and displays everywhere tempt my senses. I must be strong. I look forward as if I am wearing blinders (those “harness winkers” or leather patches that keep horses from looking to their peripheral vision) so I don’t stray from my mission. The forbidden fruit beckons. “No!” I will not cave.
It’s not that I can do this in my own strength, by the way. The cravings are too great. Every cell in my body has probably been affected at some level since I’m without the glucose and carbohydrates that provide energy to battle the infection raging therein. Oh you thought I was writing about something sinister, didn’t you? Nope. It’s an elusive fungus, partially protected in a mucous-y biofilm but not sinister per se. It is CANDIDA! And at level 3 of 4 levels, gut yeast is hurting me badly. The “forbidden fruit” includes actual fruit plus food containing any form of sugar plus any simple carbohydrate or starchy vegetable. This includes all grains, even the gluten-free kind. Now even several months into this this extreme diet I have yet to see the endpoint.
Now let’s add another layer: any food that is fermented, aged, seasoned with just about anything but salt, or at risk for trace amounts of mold! Evidently even walnuts and pecans can harbor mold in the folded areas of the nut itself. Leftovers in the frig for more than 24-hours can harbor mold. Black pepper can harbor mold. And the list goes on. Tonight I decided to sacrifice some more seasonings to try to prevent the side effects of consuming the wrong foodstuffs. The consequences have been severe: three and one-half hours of seizure attacks plus hours of recovery yesterday convinced me of the need for some more tweaking. I also stopped one of the medications that feels like it’s killing me. When a pathologist stated online that seizures change the matrix of the brain, well that woke me up again to the seriousness of this battle. Seizures can be a part of a level 3 Candida infection. Geez. And most people associate yeast with vaginitis. That was a cakewalk compared to where I am these days.
Yes, this is tough stuff. Yes, it takes total discipline, focus, endurance, and patience with the repeated setbacks. Chronic illness requires grace from one’s family, especially one’s spouse. I am grateful for a loving husband who relies more on the Lord for his happiness and peace than on me. He sees things from a hopeful place and speaks to the little improvements or the sweet moments between us no matter how small. His God-given strength is very humbling. The only way we are able to endure this is through the love of our Lord, Jesus Christ and the leading of the Holy Spirit. We believe that this is the Lord’s plan for our lives and that He is here with us no matter what happens. And if it is His will, I will be well someday. I will be able to put to use that awesome carbon fiber canoe paddle Steve bought me for Christmas! Such a gift of confidence from my beloved. I love my man!
The forbidden fruit of today have become the hedges of protection I need to keep me from getting worse. Just like the corrective events of life (those we bring upon ourselves from our own mistakes and those the Lord allows for His Divine purposes), they are not to be hated, feared, avoided, or teased. We must face that which is forbidden and directly choose otherwise, place a barrier (physical or mental) in the way of temptation, and simply go forth on a different path that leads to victory. Nothing else will do if we want to win. I did not dink around with my diet at all during Christmas and I still was very sick. Imagine if I had “cheated” on my survival diet. I would have not been able to visit with family for three consecutive days, cook for several hours at a time, and enjoy a delightful time of fellowship. Sure I “crashed and burned” around 8:00 p.m. each night. The sacrifice was worth the reward that was available to me. The reward was greater this year than last year at Christmastime. That’s cool.
From here the journey ahead is unclear. I will continue the treatment approaches I have described above yet do not know yet if any new medical approaches are warranted. I have an upcoming appointment with my Lyme and mold-literate medical doctor where we will review the difficulties I have had functioning these past two years. There’s another functional medicine clinic of interest that is 3-hours away . . . We sure will be praying for direction about all of this in the new year. Wherever the path leads I know the Lord is already there. I welcome His plan for my life that has created more joy than I ever could have imagined on my own. If that joy must come through serious illness then I would not want it any other way. Really. I’m just believing what He tells me, you know. Picture me and Steve in an outrigger canoe along a sandy beach somewhere warm . . . Yes, I can picture it . . .

Moments of happiness
If there is one thing that enduring a serious illness has taught me it is this: to live in the moment is Divine!
The moment is all we really have anyways right? I mean can you re-live the fabulous breakfast you had 6 hours ago or borrow the great night of sleep you might have in 4 more hours right now? Nope. While I do value reflecting on the past and hoping for events in the future, I try to LIVE in the moment. This translates into a lovely collection of coping and being behaviors that keep me sane these days. Let’s take 10:51 p.m. EST on Sunday, for example.
Steve and I had a really nice time visiting with his son, Daniel, and his girlfriend Elizabeth. We enjoyed their happiness, love for each other, and sharing of their plans for the future. Our time together went quickly and I thought little of my discomforts. Looking ahead, I foresee many good things for them with the blessing of the Lord on their lives together. Living in the moment, I refused to consider what it would be like, should they get married, trying to navigate various family activities whilst sick on my unpredictable schedule. Living in the moment whilst lying in bed with seizures right before they arrived, I refused to spend energy trying to figure out what I would say should I not make it to the living room to see them. The attacks stopped just after they walked in the door. The worry would have been wasted if I had spent any energy there. I praise the Lord for helping me in those tenuous moments. I praise the Lord for our moments of happiness this evening.
Steve and I are looking forward to several family Christmas activities in the next few days, including a church service in the water-damaged building that is our church home. This will require me to wear a carbon filter mask as soon as I walk in the door and wait to remove it until I enter the shower at home. This will require both Steve and I to remove our outer clothing and coats when we get home and toss it all in the dryer as soon as we walk in the door. This will require an awkward conversation with Daniel and Elizabeth about our mold decontamination procedures should they come back to our house later that evening. So right now, instead of ruminating about all of this, I am choosing to spend my energy looking forward to worshipping in our church home for the Christmas Eve candlelight service. It will be my first time with Steve there in over 6 months . . .
Moments of true happiness come easily sometimes and other times they require arduous, copious amounts of work. All I can say is that in this one moment in time, now 11:04 p.m., I am grateful for a few happy moments today. This is new for me. Perhaps I am starting to live again? Yes. That makes me happy, happy, happy.
Lost in Space
Today was a better day. I almost don’t know what to do with myself! I slept a total of 13 hours: slowly moving through the motions of self care then made my way to the kitchen. Five hours later I emerged having made dinner, homemade granola, no-bake cookies, bone broth, and roasted parsnips. What the heck happened?
Who knows? Maybe I don’t need to know. I still had some rough moments this morning with feelings of sickness on and off. But this is the first evening in many weeks when I have not had a major seizure attack episode for 1-3 hours before midnight. Thank you Lord!
Tomorrow will be filled with appointments outside our home and we’ll see how that goes. I kinda think that reducing my stress level was the right thing to do today, letting my energy level dictate what I would do rather than my calendar. So as I go to bed I am massively humbled and a little lost. Gee. A better day happened to me!
Tee hee! Goodnight all. JJ


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