The Job Description of a Full-time Patient
One of the most devastating ways that having scleroderma has changed my life is that I have had to stop working. Pain and profound fatigue required me to close my successful counseling practice. It was an extremely difficult decision, and one I didn’t take lightly, but it certainly was necessary as my job performance would have suffered if I had tried to soldier on.
So now, I am a full-time patient.
It is quite remarkable how many people think this means I sit all day, having my meds in between cups of tea with not much else happening.
Quite frankly, being a full-time patient is exactly like working, except, alas, I don’t get paid. So many things need to be done simply to keep myself operating as a human being each day.
When you are chronically unwell, everything takes much longer than normal. A good example is showering. It’s something I always try to achieve first thing, as it is exhausting and I definitely couldn’t manage it by the end of the day.
My shower takes at least an hour, from start to finish. I take my morning meds in bed before attempting it and I must sit down for most of the process. Holding a dryer to style my hair is too exhausting, as well as standing to brush my teeth for too long. This is only the beginning of the day!
Clearly, forward thinking and initiative as a professional patient is paramount, together with being able to pace oneself carefully. Most of my days are actually painstakingly crafted and planned, although few people would realize this.
A huge part of the professional patient’s job description is being one’s very own personal assistant. For me, short naps during the day are necessary, but of course, these take up time, so they have to be scheduled. Visitors don’t often realize you have only woken up as the doorbell rang! So, I actually have to write in a diary when someone is popping in for coffee and when I plan to have a nap.
As a full-time patient, I must be very careful to know what is coming up, particularly if there is a medical appointment of any sort (hospital and specialist visits, X-rays, blood tests, etc.). I’ve learned that there should only be one of these in a day, and most certainly only two per week, if absolutely necessary.
It surprises me how many people think that because you don’t work, you can just do things on the spur of the moment, or that you’re sitting at home just waiting for people to drop in unplanned. If a friend is coming to visit, then I have to be careful to have prepared dinner in advance. I’m way too fatigued to cook by dinnertime, especially after a visit. An appointment and a visit in one day often are not possible, so again, forward thinking is essential.
If I’m attending any function or outing at all, I need to evaluate and organize a multitude of things.
I must ensure that I have my medications and water with me, as some must be taken at particular times. Even mid-summer, I have to pack warm clothing items, as getting slightly cold will induce a Raynaud’s attack and make me really unwell. Deliberation and research about venues must be completed before leaving home, so I know where I can park, and my disabled parking permit must be packed. Is there seating and will it be comfortable and available where I’m going? Will there be soft food I can eat? How close are the toilets? With so many questions, planning an outing is almost as exhausting as actually doing it!
To be honest, just writing this column has made it even more obvious to me exactly why I needed to stop working.
I realize as I type that being a full-time patient requires skills and stamina equal to, or even more than, what is required in a paid professional job. And, what’s more, I’m really proud of the work I’m doing, and that at this stage, I’m even managing to do it!
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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to scleroderma.
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Comments
Herta Warner
I have lived with scleroderma and sjogrens for 23 years. I too had to stop working because of fatigue and pain. My first doctor's visit was because of the pain; I was taking advil or tylenol' 6 at a time and still no relief. I was worried about the side effects, so I went to a doctor who was recommend by fellow teachers. It took only 2 visits--first he examined me and order blood work. The next visit I remember clearly "No you are not crazy you have scleroderma." I thought I had to have a mental problem because some days I was okay and on other days I thought I must have polio. My doctor said no prednisone for me. He believes that less is more with medications. After many years of treatment--low doses of vicodin along with all the other drugs for GI issues I was able to function by careful mangement of my daily activities. About four years ago I was in constant pain, and feeling not quite human. I had seen pain specialists, had over six injections with cortisone but never really functional. My doctor said he wanted to change my vicodin to percocet 10-325 because the second number was less than the vicodin. I eventually was taking six pills a day and was fine for two years--I felt "human" again. Only those of us suffering everyday know what this is like. Then the "Opiod" crisis hit. I signed my pain contract, took the urine tests; and worst of all my doctor retired at age 73. He said he enjoyed being a doctor, but not anymore. He said any pain medication drug had become a dirty word. I was handed off to two other doctors-the first one said there was no pain with scleroderma, the second said she could not write pain medications because of the hospital's crackdown. My daughter got me in to the Cleveland clinic to a specialist I had seen before. I was down to two percocet a day and living in hell. Finally I was allowed to go to 4 pills a day, which is better than two, but not enough to feel human. I have never had any adverse side effects from the pain pills. However, it seems to me that instead of cheap pain meds (which work) new doctors want to prescribe expensive new drugs that have worse side effects. After 23 years on my medications my liver and kidney tests are fine. I believe if it is not broken leave it alone. I do go to some of the scleroderma outings and I hear everyone suffering and wishing they could just not have pain. There are so many things wrong with us I just wish that we could be seen as suffering patients and not drug abusers. I pray for a better future for all of us.