This article and interview was just published on ImmuneSupport yesterday, via Cort Johnson from his Phoenix Rising website. I thought the story and interview were powerful so I didn’t want to leave any of it out. Thanks to ImmuneSupport and Phoenix Rising for this great story and interview with ME/CFS victor Martha Kilcoyne.
Martha is the author of the highly rated book, Defeat Chronic Fatigue Syndrome: You Don’t Have To Live With It.
Fifteen years ago Martha Kilcoyne had a classic acute onset of chronic fatigue syndrome (ME/CFS), but she didn’t end up having a classic outcome.
After enduring one last horrific push/crash cycle as she tried to bull her way through this disease, she and her husband knew what they were doing wasn’t working. Martha was on disability and her husband was trying to raise their two young children mostly by himself. They decided to go back to square one.
Over time, by themselves, this Massachusetts couple ended up producing many of the processes that are now used as a matter of course by many ME/CFS professionals; staying within and slowly building up one’s ‘energy envelope’, maintaining an activity log, focusing on sleep, finding the right physician, etc.
As they did so, Martha’s health slowly improved and eventually she recovered entirely. Ten years later she returned to explain how she successfully charted her road through chronic fatigue syndrome (ME/CFS).
Her book – Defeat Chronic Fatigue Syndrome – is aimed at the ME/CFS patient. It’s short, it’s readable, and it focuses on the essentials of managing this disease.
This book is not the one to tell you to take X supplement for Y problem (indeed, the short chapter on supplements is weakest in the book) or which treatments to try. In some ways that’s the easy stuff. Managing one’s disease successfully while being encased in brain fog and being torn by guilt and remorse and frustration – that’s the really hard part of ME/CFS, and that’s precisely what this book is about.
In Defeat Chronic Fatigue Syndrome Martha grapples with the fundamental issues chronic fatigue syndrome patients have to deal with:
A Chronic Fatigue Syndrome Patient Returns: Cort’s Interview with Martha Kilcoyne
Martha, you have such a great story – complete recovery from chronic fatigue syndrome (ME/CFS)! We don’t hear that a lot. Some people are going to think ‘Well she probably never had CFS,” but it sounded like you were in pretty bad shape. At one point you said When I peered around…I was in a dark unfamiliar space. My state of mind at this point was fragile.” How bad did it get?
At one point the exhaustion and pain were so great that I could barely get out of my chair and walk over to another one. I was really almost paralyzed with pain, stiffness and fatigue at the time. I would be so stiff from my shoulder to my fingers that I couldn’t hold a glass in my hands. I was bed-ridden at one point and on disability.
I think like most chronic fatigue syndrome (ME/CFS) patients there were times I was non-functioning and times I was semi-functioning. Every now and then I’d have a good day and feel like I was on the path to wellness only to collapse two days later.
I think I’m probably not as unusual as you might think. I believe more people probably recover from chronic fatigue syndrome (ME/CFS) than we are led to believe. What’s different about me is that I returned to tell my story.
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You weren’t getting any help from your MD’s and at one point you decided to bull your way through this disease. I’m sure everyone’s done it. It seems like it was a critical event for you. What happened?
I had done everything I knew to do. The idea that it was “all in my head” was my last option. I didn’t think it was, but I had to give it a try. I decided to try to push past the disease – three days later I was almost comatose. My husband looked at me and said Did you get that out of your system?”
After that the lights went on. The traditional ways of battling disease weren’t working for me. The last two years had been misery. I’d had to go on full-time disability. We had two small children and my husband desperately needed me back. Plus we’d been looking at the literature and it looked like this could go on permanently.
We knew – I knew – I had better days and worse days. He said This back and forth is not working. You’ve been basically non-functioning for the last two years. We need to figure out what you respond positively to and what you respond negatively to.” We needed to examine everything I did and what effect it had on me.
I started an activity/medications/sleep/symptoms log and began charting everything significant I did; my activities, medications, hours of sleep, etc. It was like going into a laboratory. Over time certain patterns began to emerge. I’d have a bad day and I’d look back and see I did this, this, and this and I’d think maybe I shouldn’t have done ‘this’ and I’d cut back.
For example on a good day maybe I could handle driving the car to the store, finding the groceries, putting them on the checkout counter and putting them in the car; but taking them inside, putting them on the counter and then putting them away was what put me over the edge.
My goal was to find a consistent pace I could maintain over a period of time without setbacks, and I did.
Before this, life was a series of big ups and downs but no overall progress. When I was feeling well I’d push hard and then collapse. After this it was more about a little up and a little down but a gradual uptick overall.
It was excruciatingly slow, though. There were times I was ready to jump out of bed and take on the world, but I had to stick to the plan. It was as aggravating as hell at times. I eventually started calling my husband John my jailor.” There were times I would be up doing a little cleaning in the morning and he’d say No – stick to the schedule.”
From that point on, it took me about a year before I started feeling really well. After that there was a year of gathering my strength and then I was well.
I know we don’t know what causes CFS and everyone has a different pattern, but I think everybody has consistent patterns they can uncover.
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You had a great story about your encounter with an MD at an infectious disease clinic. When he told you there was nothing wrong you just erupted – telling him that you weren’t depressed and telling him to go find someone who could help you – and it worked! That next doctor was able to prescribe you a rather simple set of drugs that did help you. Do you think if most people keep pushing they will a find a doctor with adequate knowledge of chronic fatigue syndrome (ME/CFS)?
I think that people should keep looking, if they can, until they find someone who will work with them. When I had chronic fatigue syndrome there were fewer knowledgeable doctors than there are now.
Physicians, I have learned, are just as frustrated as CFS patients. The more you can help them figure out what’s going on with you the better they can focus on treating it. The log helped a lot with my MD. He loved the fact that it allowed him to focus on certain issues. I could look at it and say I’m doing better here and here and worse here, and he could work on that issue.
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I think you spoke for a lot of people when you talked about your natural reluctance to take prescription drugs. On the other hand, the natural alternatives just didn’t pack enough punch for you, and you noted that your avoidance of them meant that you wasted a lot of potential healing time.”
In the final analysis, how important was it that you found two prescription drugs that helped your sleep and pain?
Absolutely critical. I was very reluctant to take prescription drugs. I told my doctor that I didn’t want to feel drugged out – and when he recommended I take anti-depressants, that didn’t help either because I knew I was not depressed.
He told me, though, that they were designed to help me with sleep rather than with depression and that the doses were very low. The anti-depressant (Elavil, generic amitriptylie) and pain medications (Volataren, generic diclofenac) in combination gave me really good sleep.
After about three months of deep sleep, I could start to feel it when I woke up; that crappy, groggy, exhausted feeling started to lift. After more time the payoff was huge.
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This book is a lot about giving your body the chance and resources to heal, and you put a special emphasis on getting a lot of sleep. You say you must carve out 10 hours each and every night that belong solely to sleep. This time must be sacred!” You’re certainly not alone in this; most ME/CFS physicians emphasize the necessity of getting good sleep.
You were getting help from the drugs, but how about practicing good sleep behavior or ‘sleep hygiene’? Was doing that important for you?
Absolutely. I had absolute bed times. Even if I didn’t feel like going to sleep and didn’t feel tired I still had to be in bed at a certain time. I tried to maximize my sleep time. I was basically religious about that. I’d also have a nap from 10 am to 12 noon every day.
I think the pain or fatigue or whatever else you have going in CFS makes sleep really difficult. I noticed I could fall asleep quickly because I was so exhausted but I’d wake up in pain every couple of hours because of my hip. The pain medications helped with that.
I also had intense low back pain. I had problems with low back pain before chronic fatigue syndrome (ME/CFS), but it seemed magnified. In fact I think in chronic fatigue syndrome every weak point in your body presents itself more, and that it’s important for CFS patients to identify their weak links and try to alleviate them. My chiropractor recommended I sleep with a pillow between my knees and this helped me sleep better. Now that I’m well I still do this.
I don’t think many people with chronic fatigue syndrome (ME/CFS) realize how much rest they need. I think there’s often a disconnect between the mind and the body in CFS; your mind is racing and telling you to keep moving even when your body is exhausted. There are people who drag themselves around with this disease and try to get away with it. When you’re sick, what does your body tell you to do? – Go home and crash. Be a patient.
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An important part of your program involves staying within your energy envelope and using your ‘excess’ energy to build your health. You have to be pretty ruthless with yourself for this to work; if the house gets dirty so be it; if the dog needs to get walked – too bad, etc… This program bumps up against our deep need to help out. How do you propose chronic fatigue syndrome (ME/CFS) patients deal with the guilt that stepping back even further brings up?
The ‘could-a’, ‘should-a’, ‘would-a’s were really tough. I had such guilt lying in the bed thinking I’m not being a good mother/partner,” I’m not contributing financially,” or the house is dirty.” The way I stopped beating myself up was to focus on the positive things I was able to do for my family. Besides, being permanently, chronically ill was not going to work. I needed to be a fully functioning partner, mother, worker and person again. I chose to give up one year of my life in order to fully recover rather than spend the undetermined future half sick.
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One way to combat these problems is to engage in activities designed to instill a calming, peaceful mindset such as active visualization, meditation and exercises. Did you ever try any of these?
I’m not someone who really uses those methods, but I know that many people find them helpful. Finding ways to be productive within my constraints helped quiet my stress over not contributing. I just had to let go of all that stuff festering about what I wasn’t doing, what I should be doing, etc. That helped a lot. I also made my environment more calming; I’d light a candle or put on some quiet music. I would focus on my gratitude that I was getting better, although slowly, and I held optimistically to knowing that it would eventually pay off.
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Finding an advocate – someone you can open your heart to and who you can rely on for objective advice – is an important part of your plan. Your husband was your advocate. As you would go charging on trying to ignore/defeat/overcome chronic fatigue syndrome, he’d tell that you were going to be sorry. That’s a very enlightened viewpoint! I think having an advocate like that is great, but I’m not sure how many people can find someone like that. What do people do who don’t have someone like that in their lives?
I know people are in all kinds of situations. All I can say is, ask for help. So much of what we are taught is to go it alone, to be independent, and there is some pride in that. Lots of times close relatives or friends don’t know what you are going through. Try to sit down and talk with them about it and tell them what you need. I know there are people who’ve been really isolated by this disease and my heart goes out to them. All you can do is try to build a network of support. I think there are more people ready to help than many of us realize.
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You, in conjunction with your husband and your doctor, put together a way out of chronic fatigue syndrome piece by piece. A lot has changed regarding treatment in the past 10 years. Do you have any comments on the treatments you see offered now?
The emphasis on exercise I see now really floors me. In fact it makes me want to scream sometimes.
Someone who has chronic fatigue syndrome (ME/CFS) has as much reason for doing exercise as someone who’s broken their leg. It wasn’t until I really started feeling well – until I had extended periods of really feeling good – that I started to do things like ride my bike. Chronic fatigue syndrome patients should identify everyday activities as exercise, and slowly, without crashing, work up their activity levels before they even think of exercising.
I think nutrition is important and I don’t doubt that more helpful supplements have been discovered since I had chronic fatigue syndrome, but I really wonder about people who are taking 20 different kinds of supplements and drugs at once and spending $200 to $300 a month on them.
I think some people are probably using up whatever boost they’ve gotten from the supplements because they’re not addressing such fundamental questions as their energy usage and sleep.
I support taking supplements in addition to everything else. I go back to the root of the word: Supplements are supposed to supplement your health, not necessarily fix it.
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You had a fascinating story with low blood volume. Your reading of literature indicated that blood volume was often low in chronic fatigue syndrome (ME/CFS). At one point your progress stopped and it turned out that enhancing your blood volume played a big role in your return to health. What happened?
I tend to have low normal blood pressure, but I’d noticed it had gone down. This is not something a physician is going to notice because in our medical culture the emphasis is on lowering blood pressure in general.
But when I mentioned it to my physician, he was willing to try to boost my blood volume. Neither Florinef (Fludrocortisone) nor a beta blocker helped, but under my doctor’s supervision I started to drink a lot of water and I tried to add a gram of salt a day in order to retain fluids and build blood volume naturally.
Over time it really it paid off. After feeling sick for so long, I began to feel right” again.
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I was struck how far ahead of the curve you and your husband were on many of your ideas. You got this disease in the 1993. Some of the things you came up with on your own – finding your ‘energy envelope’ and slowly enlarging it, good sleep hygiene, the fundamental importance of sleep in this disease, the activity log – are becoming accepted practice with more knowledgeable doctors.
We weren’t really trying to come up with a protocol. But over the course of time it fell into place. When I had chronic fatigue syndrome (ME/CFS), the medical community mostly thought it was all in your head. We knew that was false. So we started to collect data to try and get a handle on what was going on with me. The eight-step protocol came together bit by bit as we tweaked” along.
I want to emphasize that this is not a short haul. It took me a full year. I’ve meet people who’ve told me that they tried something for a couple of weeks and quit because they didn’t see any benefit. But this is not a normal disease; your time frame should be on the order of months, not weeks.
You have to evaluate yourself on a monthly basis to really see the difference. It’s hard to tell sometimes, when you’re in the thick of it. That’s where the activity log is so helpful. You can look back and see, yes, I have made some progress.
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Your time with chronic fatigue syndrome (ME/Fibro) was intensely painful; as soon as you got well you said I ran screaming from CFS as fast and as far as I possibly could.” Not only did you not talk about it, but you even tried never to think about it. You were afraid that even acknowledging it would somehow give it entry back into your life.
This reminds me of people who’ve been in war and refuse to talk about it. It really had a hold on you didn’t it?
Your analogy is similar, but the psychological scars left after experiencing the atrocities of war are magnitudes greater than a debilitating illness. That said, I think probably anyone who’s been in such an awful situation as CFS runs as fast from it as possible. Plus, people who aren’t ill really don’t want to hear about it. When you’re sick they don’t really want to hear about how sick you are, and when you’re well they don’t want to hear about how sick you were. You gladly get on with your life.
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Although your life was dominated by this disease for four years it did have some positive benefits for you. Can you talk about those?
CFS (Fibro/ME) truly humbled me. The gratitude that I feel for my good health is so great that it can’t be quantified. Every day I am reminded of how healthy I now am. I rarely complain about anything. I live more in the moment than I ever did before and I find that I have more patience for life’s bumps and unexpected turns. Each healthy day is a gift that I never tire of opening.
I just wish that everyone can have the success that I’ve had. I don’t expect that everyone can, but I’m an optimist at heart.
I’m glad that you were able to do things that helped you recover from this horrible illness. But what about a person who is so bad that he can barely get off the couch to get to the bathroom? What about the fact that he is bedridden 95-99% of the time? My husband has been extremely ill with CFS and Fibromyalgia for 19 years, and has been totally disabled that whole time! He gets plenty of sleep, and at times sleeps 23 hours a day, but most of the time he averages 14-18 hours a night. During his waking hours, he has to be lying on the couch because he is so weak and cannot be in an upright position because it make him feel so sick! Once in a great while (on a really good day) he can push himself to go out to eat, but that’s it. He’s doing good if he can make it to his doctor’s appointments.