How to Accept Limitations - Finding the Right Analogy

The date is July 21, 2006. It's the day I realized my gradual decline of function over three years into complete debilitation is from an incurable disease with no fix. I realized, thanks to the Internet, that I likely have the illness misnamed as "chronic fatigue syndrome." The prognosis described on multiple websites made me face a tremendous loss: I'll likely never go hiking or canoeing again in my life. I was only 40. While there were other day-to-day limitations and losses, those two were my great joys.

As the grieving process began with tears rolling down, past words of wisdom came back to me. Some were words I had spoken to others; while others were words I had read or heard: "If you focus on what you can't do, then you will miss joys of what you still can do." "Everyone has limitations, some financial, others physical, others family situations. But life can still be full and fulfilling and joyful, despite those limitations." "None of us are promised life and health for 80 years. Death and disease can strike at any time. Be thankful for the years of health you've had and know that even with this loss, others have it worse. Some are at this age or younger facing suffering and death. Some have this disease but with no family support or stable finances." Such thinking brought a more positive frame of mind and stopped the tears. I would later tell people that this was my moment of acceptance, a stage in the grieving process I believe I achieved very early.

Within nine months and seven doctors later, the process of elimination and tests confirmed the diagnosis. I quickly went from focusing on the problem out of my control to mission #1 of doing all I could to improve the slight chances of recovery (only 5% and more likely if  changes are started early after disease onset). It required self-imposed limitations of activity. (To those who don't know, the primary symptom of this disease is an exacerbation of debilitating sickness symptoms from going over your energy limitations, which change from day to day and moment to moment. The problem is that you must stop and rest BEFORE you feel symptoms. When you feel symptoms, you've already done damage. This is why the term "systemic exertion intolerance disease" has been recommended to replace "chronic fatigue syndrome" as a name for the disease.)

I figured I could either cut way back on my activity then or continue to push and have the illness debilitation cut back my activity by force, every few days in the immediate or making me bedridden in the long-term. I chose the former. Thanks to my supporting family, especially my husband, I made the changes. After a period of three years, I had improved to where I felt I could work 30 hours a week in a sit-down, low-stress job, as long as I could take a 45-minute, lie-down break in the middle of the day.

I applied for a job that was like that, but I didn't get it. So I cashed in on my local notoriety and started a freelance writing and online marketing services business, working from home part-time. But I quickly came under heavy work load demands and difficulties with a high-stress client. I got sicker, including losing over 10 pounds down to a dangerous 88 pounds.

I should have learned my lesson. But the thrill of producing and accomplishing and creating and contributing to the household (financially and otherwise) was so enticing and satisfying. Oh, I made adjustments again, got serious about taking meds, supplements and made some behavior modifications. I even refused a few clients because of the workload. But because I could do much of my work from a laptop on my bed, I continued part-time freelancing. Although, I never got back to where I could work 30 hours in an outside-the-home, sit-down job.

I came to realize a couple of years ago that while my symptoms may fluctuate or even improve some, I will not be one of the 5% who recover. While I have not sold my canoe yet (hope springs eternal), I have found ways to enjoy nature within my limitations, focusing on what I have and what I can do instead of what I don't have or can't do.

So, it was time to pursue disability, which required swallowing my pride and another level of acceptance. That meant going to a doctor with the knowledge and testing equipment to appropriately document my illness and its limitations. Just so happens, such an expert also can give better treatment suggestions. That doctor for me is Dr. Charles Lapp, whose practice is a 6-hour drive away from me.

He explained how I could reduce "flares" or "crashes" by keeping my physical activity down to so many steps a day and stopping any activity that raises my heart rate above a certain level. So, I now sweep my floor once, maybe twice a week, but in stages: stairs one time, the kitchen two days later, if I'm up to it. I only fold clothes in 10-minute intervals no more than once a day and lie down afterward. When I go to the mailbox, I sit down or lie down afterward. And I rarely mop the floor. My husband does all other domestic duties, including grocery shopping, laundry, cooking 80% of our meals, etc. I bathe once every four days, usually. I now use a mobility scooter or wheelchair for museums or zoos, and I avoid or walk very slow in large stores, such as Home Depot and Walmart. I try to schedule at least two days of home time between outings.

Dr. Lapp was pleased to see these changes. I thought I was being a good patient. But with some success in my freelance work, I got more clients and more work. I thought it would work for me to do some of it from my tablet while in bed and do about four hours at the desk on the days I feel up to it. I so enjoyed the moments of freedom from illness to do what I wanted, be creative and productive, when I didn't have the symptoms, even for just four hours of freedom. (Of course, I pushed to do 7 hours occasionally to meet a deadline, but I try to avoid that.) Now Dr. Lapp says I'm still doing the harmful "push and crash" cycle, even with just the four hours sitting at the desk, and even though I don't do anything else. And it's true. Once or twice a week, I'm so debilitated in a "crash" that I can't do any work, even from my bed.

So, he tells me that even if I don't feel any symptoms and even if it is mental work instead of physical activity, I need to take a break every 45 minutes of the four-hour work I do on "good days." (On bad days, I can't even do that much due to symptom severity.) He tells me a handicap placard for parking would be helpful to conserve my limited energy and not expend it unnecessarily. And he tells me to drink more water throughout the day and take my many supplements 100% of the time instead of my 75% success rate. And I am on a low-carb diet.

About taking a break every 45 minutes, the goal is to avoid the continuous mental drain on energy,  by spacing the work and reducing it, just like I did with the physical activities. When I said I feel the urge to continue because I'm enjoying the work, in the middle of something and not feeling symptoms, and it's just so hard to take ALL those supplements (about 10 at every meal, every day), he said I should think of him sitting on my shoulder reminding me, like a kind and fatherly conscience.

For healthy people, imagine a timer ticking as you work. After 45 minutes, you must step away for 10 minutes. Another 45 minutes on the clock, and then "ding," you must go lie down for 30 minutes. And so it goes. No matter what project you're in the middle of or deadline you have. Even corporate employers schedule a break every 3 or 4 hours. Think how disruptive it is to stop what you're doing every 45 minutes.

What I really felt like is that I would have a ball and chain around my leg all day, and I would feel that weight on my activity and limitations on it, all day long. Even if I felt symptom-free, the disease was going to still limit what I do and don't do all - day - long. No relief. No freedom from it. Always thinking about it. Always either submitting to a master's demand to do or not do something or feeling guilty. Never being my true self. Never being me, the me I want to be and the me I am in my mind, the disease-free me.

I realized it's like being in prison. Even people in prison have some opportunities of joy. They can read, socialize and even have recreation. But it's always according to the limitations imposed on them as to when, how and where. It's every day, all day; do or don't do according to limitations they did not choose.

But the reality cannot be escaped. I can either put these restrictions on myself or let the illness "crashes" put total debilitation on me, sometimes for a day or so, or if I continue in my rebellion, possibly much longer. And so, I cried, again.

I've come to realize that "acceptance" of loss with this illness, and likely many other chronic disabling illnesses, is a continuous or time-and-again situation. I've been ill for 12 years. And I still must readjust my behavior and attitude to prevent despair and keep up hope.

So, if ball-and-chain and prison are negative analogies, where was I to find the motivation to make these new changes, add on more restrictions, and stay positive? I got myself away from thinking about myself a bit by noticing that an almost all-day restriction is also experienced by those with diabetes. They must check their blood once or twice a day, limit what they eat at each meal, etc. There are medicines and supplements for them to take, also. And they must do this to prevent symptoms, not as a result of symptoms. Yet, it is limiting, and somewhat limiting throughout the day. Meal choices are never "disease-free." You either submit to the disease limitations or feel guilty and experience the consequences. My father is in such a situation and is very compliant to this constant regiment. And he has had more life and longer life because of that.

I continued to think of other situations that have continuous limitations. I thought of having to care for a baby. The baby must be fed, napped, diaper-changed, etc. throughout the day on it's schedule. So the mother does not ever have total freedom without the baby while she has it. Ongoing during each day, she must stop what she is doing or what she wants to do to care for the baby.

Although I chose to not have a baby of my own, I find comfort in thinking of my illness as a baby that needs continuous care and thus preventing total freedom or even brief moments of total freedom. Mothers do it all the time, and sometimes the baby is a surprise, so it isn't always by choice. Yet, they do not resent their loss.

This also externalizes the illness. It's not me, Tina; it's the illness that needs this special treatment. I'm not being difficult or demanding or needing pampering, like a narcissistic, fragile "princess." I can even think of it as not being my body. It's this demanding baby, the illness. And it's not wrong that the baby's needs must be catered to. It's good. And so changing everything about my whole day around my illness needs is also not wrong, even if it imposes sacrifices on not just me, but others also.

The hope is that the baby will gradually grow to be healthy by such sacrifices by the mother, day by day, week after week, for years. Gradually, the mother gains some freedom as the baby becomes less demanding.

Although I will not be healthy again, I do think I can gain more function, and therefore experience more joys, if I take care of my baby.

Now, I must end here because my baby needs some rest.

Comments

  1. My "baby" isn't growing up fast enough, but at least she's out of diapers.

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  2. Ha! We won't see results in the short-term. Nor do we see immediate harm (like within minutes). That's why it is so hard. I guess we are more like animals that need immediate good or bad consequences to be motivated to change behavior. So for me, another motivation is to prove I am more than animal and will do what is wise for a long-term benefit.

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  3. Our lives are complicated ones. I've added a few extra chronic conditions and an injury to my list but I still find the CFS the hardest to deal with. I'm trying to be disciplined again, picking up a heart rate watch and figuring out a 45 minute rest alarm on my watch. I've never been very good at such restrictions though (I'm the person who eats 2 chocolate brownies just to show my diet it doesn't control me, lol).

    Push-Crash is necessary sometimes. There are somethings that can't be kept under a certain BPM or 45 minute rest cycle and I'll suck up the consequences for those, but I do need to get myself into a more predictable cycle if at all possible.

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