Chronic Fatigue Syndrome – How to Get Help
I have had chronic fatigue syndrome for more than 15 years, and have had all the symptoms that one can have. Here is my list of things to do if you have it. Please keep the faith that one day you will be well.
Please look at item 11 for research studies that you may want to enter into.
- Finding a Doctor
Fifteen years after getting CFS I can tell you that doctors are still as clueless about the disease as they were in 1995. When I first started asking my GP about my symptoms, he sent me to three specialists. All of them sent a note back saying to send me to a psychiatrist. In other words, these four doctors knew nothing about CFS, only that I was a head case and needed talk therapy and anti-depressants. And this took more than a year of my life, in which time I was so sick I could be in bed for a week at a time. That’s seven days so sick all you can do is get up to use the bathroom.
I am sad to say that all these years later, when I run into someone who has chronic fatigue or is floundering around trying to get a handle on how bad they feel, doctors still, at the end of the first decade of the third millennium have no more knowledge than when I was at my worst. Hence you have to go out and find the right person yourself. I am not a person who believes in non-traditional medicine – the explanations, is what I mean. I believe in cures that actually work – but I can tell you that a naturopath or homeopath type ‘doctor’ often can do you some good with natural remedies.
Here’s why: I finally found a doctor who specialized in chronic fatigue. You have no idea the relief you will feel when you find someone who actually believes you have a disease. This is very important, because the medical profession, as mentioned, is pretty useless, even a psychiatrist who will try to talk you down – though his antidepressants might well be a very good idea.
Doctor Hoffer I found by chance in Victoria where I live. His thing, as he was a friend of Linus Pauling, was vitamins – but his believing in me gave me something to hold on to in an awful time. His belief in vitamins is something he shares with naturopaths and herbalists and so on, hence, why they may do you some good. My sister who also has CFS and been sicker than I, found a naturopath in 2009 at a Vancouver clinic: Dr. Agape National Health Centre. Her condition has improved dramatically, particularly her physical abilities, such as climbing stairs.
His regimen included many things, every day, and more than $100 per month: Vitamin C; Oil of Evening Primrose, Vitamin D, Vitamin B12, Niacin (vitamin B5?), vitamin A, a B compound Pill, folic acid, calcium and magnesium. I had to take protein supplements, too, because of my allergies to meat. In my opinion, after taking all of these, and more, for five years that the most important ones that stood out for me were Niacin and B12. That does not mean the others are not important, they are, Vitamin C being an obvious one. Linus Pauling would have gotten the Nobel Prize for the third time if he had not been considered nutty in the ’70s – its antioxidant properties.
But the two stood out for me. Niacin gives you the wildest rush for the first fifteen minutes. If you didn’t know that it did that, you would go to emergency, it is that much of a flush and creeping of insects down your neck, arms and chest. But the purpose of the niacin is that it prepares you to deal with all the allergies that you have.
Vitamin B12 I had to take by injection every three days which is pretty icky, but that’s what I had to do. I had stopped eating red meat (beef, pork, lamb) and one runs out of B 12 from these sources in 3 to 5 years (you vegetarians need B 12, too). The purpose of B12 is to reduce mental confusion and inability to think. This was vital to me because the simplest decision becomes impossible to make, let alone trying to earn a living.
How bad do you get? If you suffer CFS you will know, but here is an example from my life: when I tried to get writing contracts, I would have to go to an interview. I found the stress of having to deal with this situation was so bad, that if it was on Thursday afternoon, say, I was wiped out and in bed from Monday all the way through to Thursday at noon when I had to drag myself from bed. Then after the half hour, I had to spend the next four days in bed. That’s how bad.
At my worst, I remember driving five minutes to the marina where I had a boat. I got on the boat, smelled the gasoline and had to leave. I spent the rest of the week sick in bed with my allergy to gasoline. Absolutely, completely wiped out. I didn’t think that I could drive home. When the light changed from red to green, I didn’t know what that meant. That’s how bad you can be. That’s why finding a doctor is the first step. But if you can’t find a doctor, the list below will help you deal with the disease.
Sleeping is next to impossible when you have chronic fatigue syndrome. That is why it is called chronic ‘fatigue’. And you must get this one under control or you may get so bad you die. A human being cannot be awake for 13 days without dying. This disease can last two decades. You must deal with the issue of being able to sleep.
Here’s what you do: you must provide yourself a full night of rest. Many sufferers try to ‘nap’ in the day. I put the word nap in soft quotes because I have never, in more than 15 years of having CFS been able to sleep when I lay down in the day. I did and do lie there vibrating. I would never get to sleep. The only good the ‘nap’ does is to use less energy than required if sitting in a chair.
And there is a negative outcome to napping in the day: you cannot sleep at night. But I can tell you that the most important thing you can possibly do for yourself, though you must do many other things, too, is to provide that sleep. If you have to take pills, take them. Do not rest in the day if you cannot sleep at night. I take Zopiclone and its derivatives. I have also been prescribed Novo-temazepam, but found that it left me woozy for half of the next day. There are a long list of ‘pam’ drugs, for example, lorazepam, and the related, Alprazolam, commonly known as Atavan, for anxiety which you will have big time if you are trying to earn your living while having CFS.
Now, all drugs have their side effects. I take Zopiclone, and have done so for 15 years. It is a progressive hypnotic, meaning that it is addictive and that it is technically not a sleeping pill. I dealt with the addictive part by not allowing myself to take more than 1.5 of the 7.5 blue pills.
I take one whole Zopiclone at bedtime, leaving a half of one to take in the middle of the night. I also take probably the oldest antidepressant, Amitriptyline. It has two effects for me: it is a sedative (from the era of valium), so it puts me to sleep; and, it is an antidepressant in amounts from 75- to 250-mg. I take three 25 mg yellow tabs along with the zopiclone before bed and take one 25 mg pill with the other half of zopiclone in the middle of the night. This arrangement allows me to sleep about 9 hours. Please note that the effect of taking the pills in the middle of the night might just be psychological, but who cares. It is the issue of being stressed out just considering that you may not be able to sleep that wipes you out. Do what it takes to take this problem off your mind.
You need to figure out a routine of pills to achieve a full night of sleep. Do not turn down antidepressants, but tell the doctor you want one that will help put you to sleep. Not sleeping is, among other things, depressing.
I only vary my pills in the event that I have to be up early and therefore simply must get to sleep at a specified time. I add a half to one zopliclone, but I only do in for one night – remember its addictive properties. And when the depressive thoughts flood my mind, I add a fifth, and some times, sixth amitriptyline. Do note that I add the extra antidepressants for as many nights as it takes to feel better. Some antidepressants, for example, paxyl, take as much as a month to start working. So taking one one night and not the next will not solve being depressed. I keep taking the extra until my mood has risen and stabilized. I have to add that I have been assessing my mood for a long time and am much more healthy than I was. When you are really sick with CFS, you may be unable to assess your mood.
You simply must get your sleep pattern under control or all the rest of what you should do will not help you.
The most important issue to get under control, and as important as getting sleep, is the allergies, intolerances and sensitivities that you will have to everything around you.
I had had mild hives and itchiness with ice cream and strawberries for a few years before I found that I was sick. In that same time, my marriage was falling apart, and the stress from that was so high it was two years until after my divorce that I realized how sick I was.
My first killer of an allergy was to roast beef. I was going to the rights of passage place for Canadian writers: The Banff Centre, and had a huge fill of beef before leaving. When I arrived in Banff I was so sick, I had to stay in bed for a week, instead of work and etc. I could not eat the food there and was taking three extra-strength Tylenol every three hours with little relief from migraines. I had foolishly, prior to this, slowly worked up to taking a dozen extra strength Tylenol everyday for ten years – something that 20 years later, has given me liver and kidney problems, but at the time, it was before all the contraindications we get today.
When I got home, I went to an allergy doctor which was a waste of time because they do that prick thing for 100 things to which you are not allergic to. For example, pine turps and so on. The only things that were positive were dust mites, dust and cat dander. But I was allergic to the entire world and you will be too. All the tens of thousands of chemicals that have been invented in the 20th century are in our environment making us sick. (The most significant to the human race is: bis-phenol A. It is from the type 7 recyclable plastic and mimics estrogen, making males into non-, hermaphro- female, and non-reproductive males, calling into question the survival of entire species. Frogs first, humans next. And you thought Global Warming was bad).
The hard part was figuring out what made me sick. The problem is this: how do you figure out each particular allergy when you are allergic to more than 90% of the foods out there. It took me more than two years of trial and error. And many of the items I would not have expected. One of the hard ones was carrots. How could one be sick of a basic vegetable? That is how hard it is, even if the food is clean. By this I mean sulphite and nitrites and nitrates. The former is put on lettuce and etc. the latter in every smoked meat, like hot dogs, and barbecue sauce, even soy burgers.
Here’s a short list of the foods I could not eat: tomatoes, nuts (and that included even touching a nut, any kind, from peanuts to cashews, and any product that had a nut oil in it), milk, eggs, white rice for Pete’s sake, all dairy products including yogurt, cream, ice-cream, butter, all cheeses, and my favourite: pizza, because of the cheese (and lactose intolerance and irritable bowel syndrome), salmon and every other kind of fish, lobster, crab, shrimp and every other crustacean, pork, beef, lamb and every other red meat (for example, elk, deer, ostrich, etc.), all oils whether made from palm kernels, canola, soy or anything else, mayonaise, all preservatives, like the kind they put in every canned and bottled product including all cereals, chocolate (can life be so unkind), Coca Cola, my favourite sin, and every other cola soda pop, root beer and all other soda pops featuring anything other than carbonated water, Hawkin’s Cheezies (could hardly go on without these) and every other kind of chip whether ripple chips or tostidoes, pita bread, pastries, date and nut loaf, banana bread, bread, no gluten problem for me though, but every kind of baked bready food, avocados, garlic, white onions and every other kind of onion, ketchup, relish, mustard, horseradish sauce and every other kind of condiment in a container because of the ingredients and preservatives, soy milk, soy this, soy that, everything soy, every thing that came from a bottle, or a can, or plastic container, bananas took me five years to figure out and then every other kind of fruit (save apples) including pineapple, lemons, limes, oranges, pomegranites, beans, rasishes, peas, chick peas and all other vegetables other than raw corn, all kinds of dried fruits, particularly those that come from places like Chile where they still use DDT, and places like Turkey where they use sulphur or sulphites on things like apricots, raisins because they have wax to make them shiny and so little sulphur you can hardly smell, but I can tell you that your sense of smell goes way up. I can smell sulphur on vegetables just going into the vegetable part of the store. If I make a mistake, by the time I smell it on my fingers, I am already dead.
But this is a short list. There are hundreds of other foods that had to be cut out. And this is the big problem that you face, with no doctor to help you, unless you find a copacetic naturopath/homeopath and many years of being sick to figure out what you leave out. But slowly after many years you will start getting to the point where you are not wiped out by foods, because you have very little choice left. And the niacin will help in this regard.
What is left to eat? Virtually nothing. It will take you years to figure out your problems. I existed for ten years on: one specific kind of raisin scones, apples (skin off because of the carnuba wax they put on them to make them shiny), boneless skinless chicken breast with no sauces or flavourings whatsoever, apple juice, only tea until noon, potatoes in the skin, and raw corn. A whole decade.
And that is only the beginning. I am allergic to virtually every kind of chemical in our environment. You will be, too, and you need to figure them out. Once you do, you will look at your household cleaner cupboard as simply full of poison. I threw all of it out, and cleaned things, when I was able to, with hot water on rags. That’s it. Vacuuming made me so sick, because it lifted the dust into the air, I had to put up without vacuuming for many many years. My house was killing me. But I had no alternative to living with a slow case of sickness because cleaning made me so so sick. Try to eliminate carpets and underlay. Get down to wood or linoleum and have someone else clean it, if you can find anyone. You will not on your own be able to afford a domestic goddess.
The chemicals in your cleaning cupboard include pinesol, toilet cleaners like Vim, those blue duck things, Drano, most particularly air fresheners like Febreeze – you will come to think of these things as poison directly from an oil well that you spray into your only air to make you so sick you can’t get out of bed for days. This includes all paints, whether latex or oil based, and does not matter whether it is acryamide, enamel or whatever.
As for the chemicals in the environment, meaning the ones you know you come in contact with – you can’t take action against chemicals that you can’t smell, like PCBs or Bisphenol A and so on. But in the aerosol department, gasoline is a killer for me, get a few drops on my hand when filling the car and I am sick in bed in less than an hour. Even the smell of gas, any kind of grease or oil-based product that is in the air. Every time I fix something like my car, or boat, lawnmower, and the exhaust from all of these, once I get grease on my hands I am wiped out for the rest of the day. Wear disposable gloves. If you are allergic to latex, or to baby powder, try the blue nitrile ones. When I paint, I use an industrial gas mask with the replaceable chemical filtres so that no scent comes my way. And, even then, if I get paint on my my hands or clothes, then I get sick, too. This includes paint thinner, any chemical like dormant oil spray for plants, citronella for insects, smell of propane, glues, Goop, diesel, WD-40, Loctite, all dry-cleaning products including, Scotch Guard, per-cloroethane, Brillo Pads. More than 75,000 chemicals have been developed in the past 50 years, and only now are we staring to realize that they are killing us. Asthma being a leading generalized disease group results largely from chemicals we breathe, particularly living close to a major road syste.
And the long long list of personal products that people use. Shampoo, conditioner, those absolute killers, static cling sheets for the dryer, even the ones the neighbours use because their vents come into the air you breathe outside, deodorant, skin creme, hand cream, dermatologic products, perfume, cologne, candles, candles wax, bees wax, the scents from candles, burning candles, women’s makeup, particularly the base or foundation put on the skin before putting on makeup – a real killer for me. I have to walk away from such smells within the first few lungfuls of them or I can be wiped out for several days. Lipstick, mascara, the clothes people use to clean their glasses, anti-fungal creams or aerosols, soap, dishwashing soap, clothes washing soap, walking in the soap and chemical aisles of food stores. Simply the smell can leave you in bed sick as a dog. House mold and mildew, static air from not exchanging air in the winter, not changing furnace filtres often enough, needing HEPA filtres. The first one I bought actually made me sick because the charcoal in it, in early use was putting the smell of charcoal in the air. Everything in the air can make you sick. Alcohol, yeast, beer (a true tragedy!), buildings with mold in them, like archives and museums. It’s a mine field out there for allergy sufferers. So no going out to restaurants, bars, nightclubs, churches, recreation centres, city halls, shopping malls, stores, any building where people gather will be filled with dozens of chemicals that will make you sick.
The only thing good about all this is that your nasal abilities will increase to an astronomic level. I can smell scented products in the air from 30 feet away. I can to into a room of several hundred people and walk right up to the one person with perfume on and point them out – this is assuming no other personal product or its residue on clothes, has been worn by any of the hundreds of other people in the room. At my worst, I had to hold my breath and dash out into the air so that I wouldn’t get as sick, but, even one lungful of a scented product put me in bed for days. Develop your nose. It will save you many times. You will come to realize that we are saturated in chemicals that are killing us, only the effects in others is not as strong – yet.
You will get to the point where your would like to explain how sick you get by putting your hand on the head of someone with a scented product on who just doesn’t get the point and saying: “I take from you your health, and give to you my sickness.”
You may feel very badly about yourself because you just can’t seem able to get it together to get it together. Don’t feel bad about not achieving things, even though this world is about achieving things, if you are an adult. CFS wipes out your ability to do anything. Try not to beat yourself up about your inability to keep to even the most rudimentary plan.
I floundered for more than 10 years with my family and others telling me constantly what to do, and how could I live if I didn’t have a job, and why couldn’t I eat white rice or whatever, which is simply negative stuff aimed your way. You will not be able to do anything about it. You will simply flounder without hope year on year and life will seem to grow away from you, even though you are so sick you just cannot do things: keep a job, take kids to lessons, plan meal schedules, do washing.
I have been improving slowly, but now have realized I will have chronic fatigue for he rest of my life. I have to tell myself constantly that I cannot achieve things because I am sick. It is something that I struggle with even now, when I have been telling myself for the better part of two decades not to feel bad about not achieving anything, that I am sick. You just have to keep at it.
It’s true, too, that even now, I could not go to a regular job, which I have not done for more than 22 years. The stress of not being able to control my situation would leave me totally wiped out by coffee break at 10 in the morning. Keep telling yourself you are okay when the negative thoughts enter your head. Most of the time you will be too sick to even have negative thoughts.
Not long ago, I was asked to talk with someone else who had CFS and was much earlier in her sickness than I. When I asked her how she was feeling, she was unable to tell me. She was so incapacitated with feeling small that she could not put into words how she felt. So I started telling her about me, for example, what I had had to do about sleeping. Only then did she tell me that she napped in the afternoon but couldn’t sleep all night long. I told her what I said above.
I should add that she was unable to do her job, but had a husband who was working. Needless to say, her sickness was affecting her releationship. But she didn’t have the confidence to tell me this. I had to lead the conversation saying that I could not have someone in the same room as me if I was ever to go to sleep. And that prompted her to say that she a some problem.
The conversation ground on for three hours, her unable to even talk about having CFS, and I trying to lead her by telling her my story. She couldn’t even have a conversation. That’s how bad she was. I had to tell her parents when they said they were at wits end, about how they had to intervene with doctors for her, harp on her to do certain basic things, to follow through on seeking a herbal this or a vitamin that. She just couldn’t do anything. She was floundering and had floundered for almost a decade and still couldn’t even verbalize her problem.
Her parents said what if I’m in my sixties still doing things for my child. Will she never grow up? Who will do things for her after I am gone? And so on. I said that your child is floundering, she isn’t doing it on purpose and you have to continue to support her for as long as it takes and just accept that. She will come out of floundering when she is able to do so. There is no time limit, no score card.
One of the small things that can help, with the depression that occurs with sickness is a seasonal affective disorder lamp, as in, a SAD lamp. These put out high luminosity of light – not full spectrum – and sitting with the light on your face for half an hour a day, makes a person feel better. Try it out. I now leave mine on all day while I work at my computer in the winter – Canada seems all winter sometimes – from late September into late May. Get out in the sun and take Vitamin D.
Just accept that you are floundering, it’s okay to be sick, even though you may be so sick you cannot even comprehend what I am writing here. And for relatives, you must commit to staying the course, and find non-pressuring ways to help your sick relative. Remember that if you do it with any kind of negative tone, that the person will just pick this up and slide away from you, back into sickness.
5. Eating Regimen
With all the allergies and sensitivities that you have, you will have a very restricted list of foods and drinks that you can eat. Going out to a restaurant will be a major challenge, if you even attempt it. The problem is that those without allergies don’t think about the little things, like toast that is put on a grilling surface rather than being put in a toaster. They do not get that the residue of cooked meat, for example, can make you sick. Fortunately these days, there has been a big improvement in the public’s and restaurant understanding that some people do suffer allergies and will leave off things that you ask them to.
First, make a list of those things you can eat, and eat enough of them to give you enough protein, calories, vitamins and minerals. Do note that you need to be specific in what you cannot eat, for example, I could not tolerate apple skins, but could eat skinless apples all day long. Be specific. Go to a dietitian with your list of foods. I found, for instance, that I was eating about a quarter of the protein I needed in my diet. So, I added a protein supplement. These are very expensive and it seems hard to justify their purchase when you are ill and in financial stress. But do what you need to do to get a proper diet – or you will not ever get well. I found that I could tolerate whey protein – though I am lactose intolerant and get irritable bowel syndrome from milk products. You may need gluten free/soy free foods/proteins.
And follow your eating plan. I am now hypoglycemic, something I did not have prior to CFS (meaning I had to first find out that I was hypoglycemic, something that took several years to figure out). I went through peaks and crashes all day long. Finally I realized that I had to eat about every twenty minutes to maintain my sugar level. That means constantly eating something. You may well have to do this too, or have some other regimen type requirement. Make sure you find out as if you don’t eat properly, it will make you far sicker than you already are. And do note that protein in your diet helps to maintain the sugar level in your blood for as much as three hours. Eat it and you have one way of counteracting the peaks and crashes. You will need to carry food and drink with you at all times because if you crash, you will be wiped out for a whole day. So you need to catch the crash at the first symptom, often, a reduced level of thinking and decision making. I never go anywhere without water and without some types of candies high in sugar. Werther’s Original candies have saved my bacon hundreds of times, as do Tic Tacs. One Tic Tak gives me about 30 minutes of leeway. But if you are out without something, get to a store and buy something quick.
If you travel, say by plane, take enough food for several days. If you tell the people at airport carry-on security you are diabetic – much easier to explain than hypoglycemia – they will understand and let you take on what can otherwise seem like an excessive amount of food items. You can get stuck just about anywhere and you do not want your thinking abilities compromised in a foreign country, particularly one where you may have difficulty finding the quality foods you must have to stay healthy.
My experience is that ringing in the ears – an experience that is so killing I cannot even describe it – is made far worse by lack of food, lack of rest and too much stress, among other things. I have asked other CFS sufferers and many of them say the same thing. Don’t let anyone tell you that tinnitus (the technical name for ringing in the ears) is not serious. It is the worst symptom of CFS. It takes you right off your feet for weeks at a time, and you need to eat properly so that it contributes to reducing the ringing.
6. Getting Control of Your Schedule
When you have CFS you lose the ability to work because it wipes you out. For those of you who still retain some of this ability, I am happy for you. In any case, getting control of your schedule will help you be less stressed and less wiped out. If you have control of what will happen in your day and life, you don’t have to worry about what will happen because you will already know. This seems self evident, but let me give you an example: for years, and I didn’t know this was happening, I was completely wiped out in the evening, any time after about 4 in the afternoon.
After years of this languishing so stressed that all my muscles contracted for hours at a time, it finally came into my conscious thought that one of the big worries of mine was that I never knew when the telephone would ring. As I had no ability to stand the stress of this possibility I was wiped out by the possibility, even though it seldom happened that the phone would actually ring. I decided not to take telephone calls after 6 pm, to turn the ringer off and machine noise off and leave the phone base in a different room from where I was. This small change in taking control of my schedule took a great deal of stress off me, so that evening was not a time of silent, lonely dread.
Over the years, I moved the close off time to 5 and then 4 pm. Some time later I decided never to take a call when it came in. My family and others, work things, for instance, were not very happy, but I told them it was my health and schedule that was important. I now seldom phone anyone back in less than two days. People who know me send me emails, as I have less stress with those and they are a kind of cool thing afterall. So take control of your schedule.
If you are putting exercise in your day, and you should, as below, try and put it in at a specific time and make a rigid unbending rule about everyone and thing in your life. The purpose again is to reduce your stress, and with CFS the possibility of stress is almost as important to eliminate as it is to ensure you sleep properly. I do it first thing in the morning, have a shower and clean up so the day does not begin with the detritus of yesterday hanging all over you and your night clothes. It is very easy to slip into complete slothfulness as it is too hard to climb out of it. And nights become days and days become night and the inside of your head drifts down and away.
Part of getting control of your schedule is finding a way, if you can, to fit some income working time into your life. I will deal with the income part next, but here, the point is to figure out what you can do. For me it was to become a freelancer of non-fiction. As a literary writer, non-fiction comes as easily as breathing to me. For you, your strength might be gardening – so put a flower stand in front of your house, and make money that way, or eggs (many cities allow people to keep chickens), or stuffing envelopes, or knitting for charity, or developing a product of some kind and starting a blog to sell it. I know someone who was able to begin drawing (but not use paint because of allergies). She was able to over time develop into making drawings from photographs of babies, houses or whatever else she could do. And then, if you do so, sell it at market rates. Your confidence will be low and you will never price what you do at its correct value. But I say: if the market price is, say, $50 per hour, then use that as your price. Where you make allowances is not with your confidence up front, but later, after the doing, for example, if an accomplished artist would do the drawing in 10 hours, you charge $500. It doesn’t matter that it will take you, let’s say, 25 hours. First you price yourself in the market, and slowly, over time, your speed will increase.
By having control over your ‘work’ schedule that eliminates stress and gets somethings done. For me, at my worst, I might have gotten 15 minutes a day before I was wiped out. I made myself accept that inability and told myself it didn’t make me a bad person. For about five years I was only able to work one hour a day. So I sat at my computer and wrote as fast as I possibly could for my hour, and then went back to bed for the next 23 hours. Awful, but it was a plan, and slowly I worked toward being able to pay some of my bills. Don’t beat yourself up for your inabilities, just work with what you can do. Keep the faith that one day you will do better.
7. Making an income
Making an income while you have chronic fatigue is an oxymoron.You just can’t do it. The problem with this is that we all have to pay our bills and that is a huge problem. Chronic fatigue is so hard on a person that losing your job means you have to have some other support or you will slowly become so financially low that you become homeless. Then you will die because it is not possible to have chronic fatigue while you live on the street and sleep on cardboard. That is simply the truth. A sad one, but the truth. A truth for a person without any other support, as in some family who will help you out.
I have made some suggestions above for when you are well enough to do something. Unfortunately, there are many years before that time will arrive and you will flounder looking pretty useless to anyone outside of yourself. As mentioned, don’t think badly about yourself. You are sick and that’s that. The most important thing to have in order to pay bills is family, particularly a spouse or parents where you can live while going through the worst of the disease. This means that if you can help maintain it, the most important thing you can do is try to maintain a good relationship with your partner or family during the trying years. A partner may want to move on and leave you because they didn’t sign up for supporting someone for a period of time that seems endless. And you may lose that partner, another strong pain to bear. The bright side of this is that you will be so sick that you cannot feel much about losing the relationship.
I lost my marriage (thankfully in my case), my health (previously something I thought in inexhaustible supply), had no money, had no job, couldn’t work and lost my children – the worst thing that could ever happen to anyone, and it goes on at 15 years for me (no contact at birthdays, no contact at Christmas, etc. – this is just life). Very painful. Perhaps it will change.
Regardless, you will have to pay your bills. The best thing for you to do is: do something that you are good at. This is usually your favourite hobby, and so it is something that is nourishing and positive for you to do in your diminished capacity. It’s positive, even if you don’t earn much. Then you find someway to make $$ out of it. Remember the person who loved watching soap operas. She parlayed that interest – didn’t have CFS – into Soap Opera Digest a multi million dollar outcome. You will not be able to handle the stress of such an outcome, but it is unlikely that you will ever get to such a stage.
The reason for doing something you are good at is that you don’t have to any studying, or course work or anything else. You are already starting as something of an expert. Don’t ever start out to do anything where you have to do anything other than what you know – research never pays off, except when it contributes to a longterm goal. It takes too much time. Then find a way of expressing what you already know in a way that brings you money. I have made many examples above in item 6. Your hobby may be: horses, drinking wine, collecting stamps, collecting Star Trek memorabilia (Elvis?), playing bridge, singing in a choir…
My hobby was fishing. I didn’t think I knew that much and there were plenty of people out there who I thought knew way more than I did. But you don’t have to be an expert when you start out, just have something to say. You will become an expert over time. It just slowly snowballs. I made my first trip to BCs Queen Charlotte Islands to fish Langara – paid by the resort on the understanding that I would do an article – when I was very sick. This was when they didn’t have any sympathy for those with allergies. It was tough (and the guy who went with me almost ended my budding career on my first trip, the turkey). I just took pills and got through it. I knew that when I got home, I could go back to the one hour a day writing and spin the one story into a dozen in the next few years.
After 15 years of being sick, I have developed so that writing about fishing is an important contributor to my overall income. I have written more than 1500 articles in that time. I have been a weekly columnist at the local newspaper, the Times Colonist, for more than 7 years. My fourth book on fly fishing came out in 2008. I have one more written and making the rounds and in the process of selling another about fishing the remote coast of British Columbia – I have traveled the entire coast asked by remote resorts to come in. I have become something of an expert – to some more and to some less – fly fishermen can be picky – just because I have made my hobby work for me in my down time. I slowly learned a whole lot over the years. And my next book that I am shopping around is about how to bring salmon runs back. It is intended to be one of my major books in my career, so a very serious pursuit for me. Fortunately for me, my first degree is in biochemistry, so I can understand scientific research. And so it goes.
Develop your own interest/hobby into earning money. It will take a long time, but you do have time. And, once again, try to maintain your personal relationship with family and partner as you will need their help to get you through. Tell them you are sick and need help. It’s a tough sell but it is what you need to do. I hope that they will be able to see that you are not just unable to get it together to get it together.
Probably the most underrated but highly important thing that you can do for yourself when sick or not sick is: exercise. When you have CFS you are at your most unwilling to add exercise to your life because you are chronically without energy. But, take it from me, it is as important as getting your allergies under control.
Exercise that has a cardio component, meaning it gets your lungs going and your heart beating, such as bicycle riding, running and swimming is good for anyone because it makes you happy, is good for your body and can be a solid social activity when you are least able or inclined to be social. I am a runner and do so, for the past 15 years, at a gym. It takes your mind off how badly you feel, and it keeps you in the company of other people who are not sick so that it gives you perspective from the very depressing life that you lead.
The most important point, beyond what I have said, is stretching your body out. Both yoga and tai chi are useful, low energy requiring alternatives if you would prefer those. The reason that stretching, and I mean your arms, shoulders, trunk, stomach, bum, quads, glutes, hamstrings, knees, calves, ankles and toes, is so important, is because in chronic fatigue your muscles tend to tighten up into spasm, and regular stretching will keep them from putting you in great pain. This is also important because many, including me, get fibromyalgia in the upper body and shoulders. Stretching out your muscles reduces this pain. I stretch twice a day, first thing in the morning, before exercise, and last thing before bed while lying brain dead in front of the TV. Before I started stretching, I could feel my body tighten up all day, and slowly all my muscles would be contracting so that my body slowly went into a fetal position. Very painful.
Exercise gives you a break from how awful you feel. It gets your mind off it, and you can use it for having a goal in a time when you cannot achieve much else. As mentioned, as adults, we live a life where we are expected to achieve things, and feel poorly when not. If you are trying to get to 25 lengths in a swimming pool, or to run a 10 km run in the spring, there are goals along the way to getting to where you want to get to. This part of your life can help you, then, with other aspects of your life, and the endorphins of it all are good for you. The spindle cells that comprise your dopamine circuits for immediate satisfaction are also turned on by exercise. This is a good thing as this system is the one that underlies our experientially derived sense of satisfaction.
Exercise will also help you with how cold you feel with CFS. Feeling cold is very debilitating. This results because blood vessels get constricted, because you are using less energy from lying still, and thus your body’s temperature is lower. No doubt your metaboloic rate is lower in CFS because folic acid, which helps with thermoregulation, is one of the supplements that you take with this disease. I can tell you that I spent years on the couch frozen, in a down sleeping bag, having to go to bed fully clothed. A very depressing way to live. Exercise which involves breaking sugar down to move muscles, gives off heat because muscles breaking sugar into two carbon fragments cannot harness all the energy released during the process. This energy is given off as heat and it warms you up.
Fibromyalgia is characterized as pain in the upper chest and arms. It can be very debilitating in itself, as pain wears you down completely over time. Seeing a doctor can produce a ho-hum response because such pain has been conjoined in the literature with most of the symptoms of CFS, for example, anxiety, inability to sleep, mental disturbances, mental incapacitation and so on. This makes it a syndrome, not a disease, and one that overlaps so much with CFS that some don’t take it seriously – not to mention that they don’t take CFS seriously.
But you must do something about the pain. The problem is that every common pain medicine causes its own problems in the body over time; Tylenol is not good for your liver; ibuprofen is not good for your kidneys, and so on. My pain got worse as the day went on, and it was conjoined with being exceptionally cold, as mentioned above. Search the web for all such things. I wouldn’t take Codeine on a long-term basis as it is a narcotic, and there is the constipation thing. Inderol is also a beta-blocker, but is what I took for two months to wean me off acetaminophen (Tylenol); it reached the point that the 12 extra strength acetaminophen pills I took everyday, simply resulted in rebound headaches, and when I had to hit higher amounts, it finally had no effect at all.
So talk with your sympathetic doctor, after you have done your web search – a recurring theme, here. And make a point of turning up your heat in the evening. Pick up a space heater for the room where you lie in state having to watch tv for the time before you take sleeping and anti-depressant pills to put you to sleep. Leave that high intensity SAD light on all day long and sit in the room with it. I have to hit 75 before my cooled body starts to warm up.
10. Be Around Well People
I have been so sick that for more than 15 years, it has been impossible for me to stand to be in the company of other human beings. I was so sick that just the stress of thinking about being with someone, even a week away, would reduce me to a wreck. This is inability to take stress. It also made me impossible to be normal around others, and so many many of my relationships, friendships, ‘work related’ acquaintances, significant others failed or never got off the ground. I mentioned to someone not long ago, who I had not seen for about 15 years, that I had CFS. She was visibly shaken because she and a whole lot of other people thought I was constantly over the edge and pretty well impossible to deal with because my mood swung so badly. At the time, I was unaware of the problem. Only now as I slowly improve, though I will never get well, am I able to think about such a subject; it was beyond me for a long long time.
My best advice to try and keep yourself a little bit level is to be around people, easy, normal people. Odd advice perhaps given my inability to do this when I was sick. But people need people. We are social animals. We die without such contact. And CFS kills such contact. Try and be around easy people, ones who do not make you anxious, nervous or whatever. Don’t put yourself in difficult personal situations. Even it this is as simple as watching people walk by on the street, or in a recreation centre, church or whatever. People do not understand long term sickness, how bad you feel and how weird you may act. And you can’t blame them for that. But find some people to talk to about everyday things, even if it is the weather, or saying ‘Have a good day.’ to someone. I finally, after 50 years of my life, understood that such a saying was not superficial. I mean it when I say it. And accept such a saying as a kindness to you, too. Be compassionate with yourself. Allow others, who may be able to hold you, do that. Speak and listen.
When my divorce ended, it took two years for me to realize how sick I had been in the marriage. The marriage was so turbulent, I had no idea how I felt. Grieve for what you lose. Watch a show like Intervention if it makes you weep. You need to pass through the illness, pass out the pain and emotion and reintegrate with life in due course. I lost my children. And it took me 15 years to come to terms with that. We all need the simple conversation that is people going about their lives. Please talk to them. Please try.
11. Take Action – Be in Research
If you can tolerate such a thing as being in a research study, below are some current ones. I read through the abstracts for most of these and found that most of them would not include me as a relevant subject. This sounds to me like more of the same old same old: well-meaning researchers not quite getting the point of the disease. For most of these studies I am too old – over 45 – and don’t have the specific things they are looking for. But, do a search at some of the websites, and you may find a subject in which you fit. It is a positive thing to do, and helps others. And these research studies are mostly done in connection with universities. But, do satisfy yourself they are right for you.
Here they are – there are many more than these:
Studies currently recruiting patients with CFS or related conditions
- Center for Hypotension (added 1/26/2010)
- Weill Medical College of Cornell University (added 12/10/09)
- Whittemore Peterson Institute (added 12/10/09)
- Huntsman Cancer Institute (updated 8/09)
- Center for Pediatric Hypotension (updated 8/09)
- Hunter-Hopkins Center (added 9/26/07)
- The Center of Community Research at DePaul University (added 11/09/06)
- New York Medical College Seeks Adolescents with CFS (updated 8/09)
The CFIDS Association of America regularly issues funding announcements as part of its research grants program. Its most recent Request for Applications was issued on March 3, 2008. For more information about this funding opportunity, please visit http://www.cfids.org/profresources/grant-policies.asp.
Please note that cfids is worth looking at as it is a website that has as its mission: working to make CFS widely understood, diagnosable, curable and preventable. I looked at their list of symptoms and while they are short compared with what I have had, they do have most of the most important symptoms.