observe:
to watch intently and study an problem;
adapt:
to modify actions or circumstances in order to change problem observed into either less of, or no problem at all;
overcome:
succeeding at resolving a problem or difficulty.
In order to apply this process to a health issue or a situation where a physical problem, disability, etc. causes a difficulty in doing something, I'd first consider what problems I had and what I needed to observe to solve each problem. In order to most easily explain this, I decided I'd need to find something I had a problem with, like doing something around the house or some part of my personal care that I needed to address. This would solve two things for me. It would give me a way of explaining the process I am writing about AND most importantly, I'd solve a problem I had.
I decided that I'd start by observing the situation that needed addressed as it was at that moment. I would then break the issue down into smaller pieces or steps. Then I could see where, in a series of smaller steps, I was having the main problem, and what in the situation worked well, and what worked but could be improved upon.
Then I'd brainstorm solutions for the parts that did not work and minor tweaks for the things that worked but could work better with slight changes. Then I could move on to the adapt portion and make the changes I'd brainstormed and see which ideas worked best for my needs and depending on the situation, the needs of others around me. I'd try the possible adaptations, and see what worked, what didn't and what I found most helpful to me and also which adaptation would be easiest on my body and take into account other issues that might affect the adaptation.
By employing these two processes of observing and adapting, I would be able to overcome the problem. I'd have a better, less painful or tiring way of doing something. This would likely give me a victorious feeling. I'd feel as if I'd won a small battle in my life with chronic illness. Life with chronic illness(es) can almost be compared to a war, with various battles being fought between the person with the illness(es) and their disease(s), syndrome(s), or conditions, depending on what the person is dealing with. So anything that can be overcome, means a battle won. It definitely feels like a victory when you've had a problem that kept you from doing something you needed to do and then by observing, adapting, you could overcome the problem. And any victory over our illness(es) is a wonderful feeling! I know many times it seems as if the illness(es) is/are winning the majority of the battles. But as long as we have the power of these three steps at hand, we can be victorious in the end.
It does not matter the size of the battle, if you've overcome some challenge or problem, it is a personal victory and needs celebrated in some way. It need not be a huge celebration but, acknowledging the victory is an important part of the process. I learned at the nursing home how important it is to acknowledge the smallest of victories. And if you think about it, the war between us and the illness(es) we have, is a series of small victories leading to battles won. And won battles lead to a war that is won.
I decided I would write about a problem I had when I got home from the nursing home. I solved it by using the process of observe, adapt. overcome. These skills are important problem solving skills that I think are overlooked at times. Employing the processes of observing and adapting, leads to overcoming a problem. In overcoming, we make a task easier, an activity more enjoyable, and doing things less painful or exhausting than they were prior to observing and adapting. The example I chose to use was cooking and how I observed the problems I had with cooking before adapting how I cooked in order to overcome the fact that after coming home, I had crutches and even less energy and stamina than prior to my illness to account for so that I was able to cook and find it enjoyable and not quite so painful and exhausting. Quite a tall order there! Before my fall and the resulting "vacation" I took from the real world to go into the worlds of hospitals and a nursing home, I loved to cook. I could not cook as often as I would have liked to because for me, cooking is a big affair. First, no matter how clean my kitchen looks, I am likely to clean it before I start to cook. This means if there are dishes needing done, they get done. This also gives me a sink of hot, soapy water so that I can wash things up as I go or I can wash and reuse certain cooking tools. This is especially important to me if I am using items that are sticky or would be hard to clean up later if I just let them sit in the sink until I was done. Plus, by the time I am done making a meal, I am tired enough that I do NOT feel up to cleaning up my mess. So that's why I get it done as I go. Then all that is left to clean up after the meal is any empty pots and pans and our plates and utensils used during the meal. And the general rule is the cook does NOT do post-meal dishes!
Observe
Even before my "vacation", I would try to break tasks down into small steps and rest as much as possible between steps. When I first got home, I wasn't sure how I'd manage to cook given the crutches and increased fatigue. I knew I'd have to do some thinking about it but that eventually I'd find a way to be able to cook the way I wanted to with as little pain and fatigue as possible. One thing that is key for me is to know the time I need to have the food ready to eat. Then I can plan things and most importantly for me, I can time my medications in a way that I take them, give them time to begin to work, and then I begin in the kitchen. This way I can also usually time it so that I can take an as needed pain pill at some time during the time I am in the kitchen.
I first started by thinking about what problems I had with cooking. In order to do that, I observed all I did when I cooked. For one thing, standing at the counter to do prep work was extremely hard on me, as was standing to do dishes, and standing at the stove to stir foods, keep and eye on pots and pans, and putting things in and taking things out of the oven. Also hard was moving pots of water from the sink to the stove when I needed to boil a large pot of water. So, I thought of each of these issues and decided how I could adapt how I did them.
I began doing prep work at the kitchen table. But that brought me to another problem. I had no way of getting the chopped items from the table to the stove because I have another problem that I need to work on solving. That problem is that I cannot easily carry anything that could spill, dump, or otherwise make a mess and still maneuver my crutches! I need to figure out a way to possibly attach a tray to my walker and then I could use it in the kitchen and be able to carry things more easily. But at the time, I hadn't thought of that idea. In fact, I just now had that pop in my head as I was typing this! So good ideas can come anywhere and anytime! Be receptive to those ideas, write them down if you are prone to brain fog and forgetfulness is a part of your illness. So, I began having all my ingredients, utensils, bowls etc. carried to the kitchen table and sitting there to do prep work. I could only cook then if someone was with me, or if I took my wheelchair into the kitchen. I do not like to do that because it can be a lot of up and down when trying to stir and keep an eye on things at the stove. That constant getting up and sitting back down takes a bit more energy than I have at times. And that still did not help me with doing dishes.
Adapt
So I needed to find a different adaptation. That came about one day as Barb, a close friend/chosen family member, and Gar were moving some things around in the living room to make room to move a buffet I guess, that had been stored in what is now my room but then was the computer room. It was being moved under the bar that separates our kitchen and living room. That meant moving the two bar stools that were under the bar. They were going to be taken to storage. I had an idea pop into my head! The bar stool appeared to be the perfect height for me to sit at counter, sink or stove. SO I asked if we could keep on for me to try in the kitchen a few days and if it didn't work, then it could join the other one in storage. That was not a problem, and so the bar stool was moved into the kitchen. It is the perfect height for sitting at the counter that is between the stove and sink and while not overly wide is a great size for me to use for prep work. I can slide a few inches one direction and be able to stir things in pots and pans on the stove. If I go a couple inches in the opposite direction from my original position, I can easily sit at the sink. reaching both sides as well as having a fairly easy reach to the dish drainer so that I can put the rinsed dishes in it to drain. I also discovered that as long as I am right by the counter and have the hand that is between my body and the counter free to slide along the counter so that I keep my balance, I am able to sit my crutches in the corner and use the counter, and my bar stool, as support. That makes carrying items even easier. I was surprised at the response when I told all of the physical therapists (PTs) and occupational therapists (OTs) I saw during a visit back to the nursing home; their reaction was to be thrilled for me. My PT Jim, did caution me not to overdo it, but also told me that I knew my own limits and how to be safe and so he was not as concerned as I thought he'd be. My family likes that because it means I need a LOT LESS help when I do feel up to cooking.
Although if it is a weekend day that I am cooking, my son is very likely right at my side to help me. He's been with me in the kitchen since he was 2, when he'd help me stir cookie dough or roll the dough into balls after I dipped it out. At 4, he asked for his own kitchen tools - mixing bowls, measuring spoons and cups, mixing spoons, spatulas, and most of all, his own chef's knife and cutting board. That was the first time we would not let him open a gift until AFTER we explained that it came with some pretty important rules. Most important was that he never use his knives without one of us being right at his side. Second to that was no talking with his hands and the knife in his hand. Basically, if he needed to do anything aside from cut something, the knife was to be on the cutting board or counter. No ifs, ands or buts. He did very well with those rules. Of course he needed an occasional reminder. But to my knowledge, he never cut himself on one of his knives, especially the chef's knife. Once he was trying to do something with a paring knife and got a tiny cut, but by then he was 8 maybe. He's gotten worse paper cuts! As far as I know, he's not had any burns. Or if he did, they were the kind where he momentarily brushed his hand on something hot and while he felt the heat, it never turned pink at all. He's had worse sunburns from playing outside in the pool and the sunblock washing off, and even that is where he's just slightly pinkish and by nightfall it's gone and he is a tan color! He's now at an age where I can tell him, "Ok son, you're in charge of cooking this meal. I will be right here beside you to watch and act as sous chef to your chef." One night, we made shrimp scampi with me helping to clarify things...oh and he's smart enough to tell me to peel the shrimp so he didn't have to do it! Smart kid we have there!
Overcome
This adaptation of putting a bar stool in the kitchen has allowed me to overcome all but one issue I have with being able to cook and what's more, actually truly enjoy it and not regret it afterward no matter how much fun it was. In the past, as much as I loved to cook, and as much as I truly did enjoy it, I rarely found it worth the cost. Many times the cost was 2-3 days in bed, exhausted, in pain, and stiff. But now, while I have little energy to cook as much as I'd like, none of my adaptations can fix that. But they have fixed how much it hurt to cook, how I paid for the enjoyment I got out of doing something I truly enjoy. Now, cooking is enjoyable again. While I am exhausted afterward, it's not the type of exhaustion where I'm so tired that I cannot face getting out of bed except to go to the restroom type of exhaustion that I've had in the past. That kind of exhaustion is hard not only on the body but the mental state as well. This is just one of many examples of observe, adapt and overcome that I've used since childhood.
In occupational therapy (OT) as a child, I learned many ways to adapt the things I did. I learned also to use the largest joint I could possibly use for a job, saving my smaller joints for jobs that only the smaller joints can do. I learned that if I wanted to lift a heavy skillet, I used an over/under grip where I put one hand over the handle and the other hand went on the underside of the handle but far enough back to support the other wrist. I learned if something was bulky and heavy, that it was best to scoot it across the floor if possible. I learned that when it came to pouring liquids from heavy containers, I had to have one hand gripping the handle and the other supporting the container from the underside to help control how much I tipped the container and how fast I poured the liquid out. Personally I try to avoid buying gallons of milk since they are pretty hard for me to lift and pour. But, when our son was going through at least a gallon of milk by himself and we used more for cooking, it was less expensive to buy gallons. We kept a half gallon jug that had previously had milk in it and washed it when it was empty to prepare it for the next time we needed it. My hubby would open the gallon of milk and pour some into the half gallon jug for me. Same with large jugs of liquid laundry detergent. I had a hard time opening jars as well. So many times as we were putting groceries away, if it was a jar that I'd have trouble opening, my hubby would open it and put it in the fridge for me so it was ready when I needed it. I only carried my laundry baskets down the stairs, then I set them down on the floor and would scoot them to the door, then I'd lift them up and carry them 2-3 steps from the door to the laundry room, which was off our screened in back porch at that time. I had a physical therapy evaluation so that the PT could see what we needed to work on, as well as my functional status and disability level. As he asked me the various questions, I surprised him with my answers. One question was "How much trouble would you say you have lifting a gallon of milk?" When I explained how I never needed to lift a gallon of milk, he seemed surprised. His surprise kinda grew as I answered more of his questions. But, that's partially the effect of having been seen by an OT during my childhood. OT is vital for helping someone who has hand, wrist and shoulder involvement, or other issues that one has trouble with doing. There are so many tips and tricks they have for helping with activities of daily living (ADLs) if that is one of the things that a person struggles with. Don't get me wrong, PTs can be extremely helpful as well, most PTs that is! I've been spoiled by my last PT.
I was having trouble with wanting to be laying down, but not feeling sleepy or physically tired even. It was more that I just needed to stretch out, get into a different position than seated. But, I also wanted to do somethings online. That presented a problem for me! My computer is right next to the foot of my bed but I couldn't see a way to solve my problem. My son just kinda sat here looking at my desk one day, looking at the monitor, the keyboard and the mouse. Finally, he looked at me and had an idea! He said, "Mom, why don't we turn your monitor, take the mouse and keyboard off the keyboard tray and then they both have long enough cords to reach where you are in the bed." So we tried it. It worked great! I use a lap desk to hold the keyboard on, you guessed it, my lap! And then we have a swivel shelf that my husband had been using for a keyboard shelf before he moved his computer to the living room that I use for my mouse to rest on. Also provides a great arm rest! This is not the first time my son has seen as problem I had and put his mind to fixing the problem. I doubt he knows that he's doing this, but he seems like he is using the observe, adapt, and overcome principle. When he knows of a problem I am dealing with, he watches what I have trouble with, then thinks about a way I could adapt how I do the task.
The perfect example of this occurred on Dec. 19, 2010. I was in the nursing home at that time. But, I was starting to feel fairly decent. I am sure my son had been watching his Dad and the certified nursing assistants (CNAs) transfer me from bed to wheelchair and vice versa. By then, it wasn't as painful as it had been just a few months earlier. But, being lifted with the person's arms supporting me underneath my arms in my underarm area, is not exactly comfortable either. Especially when you have a fungal rash in your underarm area that was extremely painful most of the time and when the rash was not nearly as bothersome as it could be, then it was just a very uncomfortable feeling. Then there was always the concern something might happen and I'd get dropped. Since I couldn't stand on my own, I was in trouble if they somehow let go of me! But that never happened to me thankfully. The only times I had problems being dropped was when I was in the hospital and there was a problem with how the lift pad was attached to the Hoyer lift. I fell about 6-8 inches to the bed. I'd been in a Geri-Chair and then was being moved back into my bed. I was over the bed and the lift was lowering me to the mattress when the lift pad came unattached. I dropped that small distance to the bed. Because the policy was there had to be at least two people helping move a patient, there was one person who was guiding me while the other was using the controls. When the sling came loose, she was able to somewhat slow my drop so that it wasn't as jarring as it could have been, as jarring as the first time I had dropped had been. Needless to say, after being dropped three times (two mentioned here and another time that is too long an issue for here) I had a feeling of what is close to terror pass over me when they brought a Hoyer lift into my room at the nursing home. It did not matter to me that the times I had been dropped were elsewhere; the only reason I did as well as I did with the lift that time was because the two aides that came in were aides I trusted greatly. They saw that as soon as I saw the lift, I began to tear up and tense up. I sounded panicky even which is not a normal emotion I have. I usually remain calm in emergencies but this was just a bad experience I had. I explained it to the two CNAs and they gave me a few minutes to get used to the idea. I know that one of the aides, I believe it was Debra, made sure that I felt her hand steadying me the whole time. I managed not to freak out but it was not easy for me. That's totally understandable given my experiences. I digress a tad bit again, bad habit.
Anyway, my son knew that it wasn't painful most of the time to be transferred, but he also knew my independent spirit and how having to rely on someone to do literally everything for me. One day, we were going out. My husband went to get my seat ready for me. My aide came in and went ahead and put me in my wheelchair while he was outside. My son then decided he wanted to trick his Dad by saying that he and I got me in my wheelchair. I said only if you come clean. SO when my hubby came back in, he looked at me as if to ask without asking verbally how I had gotten in my chair. I told him ask our son, also in that non-verbal communication method. So he casually asked, "So, who got Mom into her wheelchair?" I waited on my son to answer. He very strongly and boldly said, "Mom and I did it!". My husband is not a stupid man, so he knew better. He then asked our son specifically, "How did you do it?" which of course stunned our son. I don't think I've ever seen him change a subject so quickly. He waited 5-10 min and then decided he was ready to tell Dad how he got me into my chair. He had me straighten my legs in front of me and then lift my legs so that they were perpendicular to the bed. Then he wheeled my chair so that it was right beside the bed and had me put my legs on the bed. Then he set the brakes on my wheelchair and told me to scoot onto the bed just as I scooted off of the bed and into the chair. I thought it was a pretty inventive idea. So I decided try it. And it worked. There was a small gap, of course between the edge of my wheelchair and the bed but going into the bed that gap was not noticeable even, but going in the reverse direction, the pockets on my jeans caught on the wheelchair seat. But once I got used to that, I was able to adjust my position to avoid getting caught. I was so proud of myself and my son for thinking of it, that I shared it with almost anyone who'd listen. I stopped staff members in the halls and told them. One of the people I told was Donna, the OT at the nursing home. She was thrilled for me but also had a few concerns. One being that my wheelchair might tip over as I was trying to slide into it, so she got me a pair of anti-tip bars. They basically do what the name says, keep the chair from tipping over backward. She also go me a transfer board which made going from bed to chair easier and eliminated the issue of my jeans pockets catching on the seat of the wheelchair. Donna did ask that even with these items to make transferring much safer, she felt I still needed to have someone with me while I was transferring. I was fine with that because it was a bit of freedom that I'd not had since mid-Dec 2008 so two years later any taste of freedom was great. Then on Jan. 4, 2011 during my PT evaluation, Jim came in my room so he could watch me transfer. As I did, he said that he felt that I did well enough that he didn't feel I needed to call anyone to watch me transfer any longer. Of course I was ecstatic! I don't know if he realized the date from looking at my chart or if he had heard my slip of the tongue earlier that day when he found me in activities to set up the evaluation. I asked what time he was wanting to come by and he said around 5:30 or 6pm was good for him, if I was ok with it. I said that was fine "as it would be 7-7:30pm before my guys got there for my bir.....nothing." I am not sure if he caught my slip or not. He never said. So when he told me that, it was an awesome present. It took a few days to make it official but that's ok. And when it became official, I did promise Ingrid, the unit manager that if I did not feel well or was overly tired etc., then I would in fact call for someone to come in and just watch me. Many times I was transferring when I needed my CNA's help anyway so it was no big deal to wait until she came in. I used the transfer board a bit differently than many wheelchair users do. Many use the board to move more side to side. But, I do not do well moving sideways. So since I am going forward anyway what I do is lift my legs so that I can slide the board under my thighs enough to secure it. Then my legs are on the bed, and I scoot forward. I can somewhat pull myself with my legs and then once my rear end is on the board, the slick surface helps me slide. The anti-tip bars were unobtrusive items that were only noticeable if I needed tipped up onto a curb or step.
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| Anti-tip bars |
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| Transfer board |
Then on Jan. 4, 2011 during my PT
evaluation, Jim came in my room so he could watch me transfer. As I did,
he said that he felt that I did well enough that he didn't feel I
needed to call anyone to watch me transfer any longer. Of course I was
ecstatic! I don't know if he realized the date from looking at my chart
or if he had heard my slip of the tongue earlier that day when he found
me in activities to set up the evaluation. I asked what time he was
wanting to come by and he said around 5:30 or 6pm was good for him, if I
was ok with it. I said that was fine as it would be 7-7:30pm before my
guys got there for my bir.....nothing. I am not sure if he caught my
slip or not. He never said. So when he told me that, it was an awesome
present. It took a few days to make it official but that's ok. And when
it became official, I did promise Ingrid, the unit manager that if I did
not feel well or was overly tired etc., then I would in fact call for
someone to come in and just watch me. Many times I was transferring when
I needed my CNA's help anyway so it was no big deal to wait until she came in. I used the transfer board a
bit differently than many wheelchair users do. Many use the board to
move more side to side. But, I do not do well moving sideways. So since I
am going forward anyway what I do is lift my legs so that I can slide
the board under my thighs enough to secure it. Then my legs are on the
bed, and I scoot forward. I can somewhat pull myself with my legs and
then once my rear end is on the board, the slick surface helps me
slide. The anti-tip bars were unobtrusive items that were only
noticeable if I needed tipped up onto a curb or step. They were easy to turn so that the wheels faced up and were out of the way to get up a curb. Just had to remember to turn them so the wheels were back down
This was just another example of someone observing a problem (me getting in and out of bed on my own), adapting (teaching me a new way of getting in my wheelchair without standing up), and overcoming the problem (giving me greater independence).
I do know that Dr Passo was a great doctor. Looking back, it might be wondered why I was never put on any of the disease modifying anti-rheumatic drugs available at the time. Or why I'd never been given ______. The biggest reason is simply that I was not considered to be a severe case of JRA. This was during a time when ibuprofen and naproxen were beginning to be studied as treatments for kids with JRA. There was hope that they would work well enough that the stronger drugs with the worst side effects could be avoided. This was before the practice of "early aggressive treatment" was given the emphasis that it is given today. We know now how important it is to slow the progress of JRA in children and RA in adults as early as possible. We know now that it is in the first 10 years that the most damage occurs in those patients who are disabled by RA or JRA. As Dr Passo explained it to me, the difference between the three forms of JRA, pauci-articular, poly-articular and systemic are: those with pauci-articular JRA tend to have five joints or less affected; those with more than five joints affected have poly-articular JRA and those with salmon colored rashes, daily fevers, etc in addition to the five or more joints being affected are those with systemic JRA. As it was explained to me, polyarticular JRA is much like adult RA while systemic JRA is also known as Still's disease, which generally occurs in children but can wait until adulthood to begin, in which case it is known as "adult onset Still's disease" (AOSD). That said, poly-articular JRA, (which I will hereafter refer to simply as JRA and the other forms by their longer names) as well as adult RA both have components of the disease that are systemic. The low grade fevers common to many patients with both JRA and RA, especially during periods of active inflammation is common as is fatigue, feeling flu-like, etc. For many patients of either, slow healing cut and sores are common as is increased bruising. The bruising can be related to certain medications, primarily prednisone or other glucocorticosteroids but in some people can be part of RA/JRA. I was not on any glucocorticosteroids of ANY kind until after I was 2 and had my son, yet I bruised VERY easy as a pre-teen and teen. Even into adulthood, I bruised fairly easy. At one point in my life, I was seeing a physical therapist who, during the course of the treatment ordered by my doctor was leaving rather large bruises on me. They were not overly painful, but the PT was concerned at first as to what my husband would say when he saw them. I assured him that my hubby would know about them before seeing them so that he was not upset over them. He knows my easy bruising nature anyway and so is unlikely to become angry before giving me a chance to explain. I can understand the PT's concern as well since I was bruised from neck to the back of my thighs, because he was doing myofascial release massage therapy, which released the knots formed by muscular waste chemicals that would build up in the muscles. It was hard work in a way to have that type of massage therapy. The waste that was broken up and released into the system caused nausea and sleepiness on the days I had therapy. So while it felt good in a
