Living with Chronic Fatigue Syndrome – a survival strategy

cfsI had always been a hard worker. When Chronic Fatigue Syndrome (CFS) first struck me I was doing a demanding full time job and trying to set up my own company in my spare time. I suppose it was the stress of this that made me so ill. At the time I thought I had meningitis. I thought I was going to die.

After a few weeks of not dying, I realised that life wasn’t going to end. But it wouldn’t ever be the same again.

At that stage it was too early to know that I had CFS (sometimes called ME – myalgic encephalomyelitis – or post-viral syndrome). That only became apparent when I suffered exactly the same symptoms again a year or so later. But I already knew that I couldn’t go back to how I was before the illness. Something had to give. I quit my job and somehow succeeded in getting my fledgling company off the ground.

That was 15 years ago. Since then, CFS and I have never been far apart. Mostly it stays in the background, but every few years it launches a full frontal assault on my immune system, leaving me unable to work for weeks or months at a time.

cfslarge

These days I’m better at managing it. I recognise the signs that it’s about to return, and I stop whatever I’m doing and lie down. I’m better at setting my goals lower, avoiding stress, doing less work. I’ve learned how to live my life in slow motion.

I wonder sometimes if I could ever hold down a “proper” job again. What kind of boss would tolerate me slinking off for forty winks after lunch, then leaving work in the middle of the afternoon to potter in the garden or do some yoga? How many companies would put up with an employee who took two months off sick every few years?

I no longer kid myself that I’ll ever be cured of CFS. I know two friends who’ve had it for longer than me, and they still have to “manage” the illness, just like me. But it’s not all doom and gloom by any means. Although both of my friends had to drop out of university because of CFS, one went on to complete a PhD and the other finished his studies to become a Catholic priest, so they haven’t let it hold them back, and neither have I.

Most people don’t know that there’s anything wrong with me. I don’t look ill, and I don’t act ill, most of the time. Sometimes my wife has to tell people, “Steve’s not well.” The next day or week they’ll ask her if I’m better, but she knows, and I know, that I’ll never be truly well again.

cfswarning

If you have CFS, my advice would be to not fight it. Instead learn to live with it. Recognise when you need to slow down or stop. After 15 years of living with CFS, I know what tends to bring on an attack (for me at least) – stress, overwork, very cold weather – and I try to avoid these.

I also know what helps – music, rest, a calm environment, early nights, gentle exercise, yoga. When I’m feeling strong I exercise hard, but I sense that I’m pushing myself close to the edge if I run or cycle too far. Life has become a balancing act.

Perhaps most importantly I’ve learned how to reduce stress. Allow plenty of time to get things done. Don’t impose arbitrary deadlines. Permit failure. Try again another day. Don’t multitask. Eat a relatively high fat diet. Take regular exercise when possible. And never watch or listen to the news, and never read the comments sections in blogs.

Having the illness has lowered my expectations, but it’s also enhanced my life-work balance. And I’ve still managed to create a successful business from scratch, and have no plans to rest on my laurels. Not everyone who suffers from the illness manages to pick themselves up, but for many it is possible to live a nearly normal life.

45 responses to “Living with Chronic Fatigue Syndrome – a survival strategy

  1. Thanks for this Steve. Encouraging to see other blokes with CFS — especially those successfully working for themselves (one of my goals).

    One question: how do you avoid cold weather in the UK? Impossible, no?

  2. Agree 100% – my ME-CFS is more foreground than background, but I keep plugging. If people understood just how incredibly determined we have to be to keep going, we’d all have MBEs,

  3. I CFS as well — it takes time to adjust — but its been over 30 years now and I forget I have it usually
    ~ Eric

  4. For the past seven years I have suffered from shittiest fatigue in my eyeballs. Of course it affected my energy level and I started to suffer from chronic migraines and a right-sided earache. All of the many doctors, chiropractors, neurologists, a chiropractic neurologist, and my primary care doc could figure out what was wrong with me. I live in New England in the US and it is a red zone for Lyme disease. I work outside of my property frequently and and an avid perennial gardener.

    I had begun to think that this fatigue was going to live with me for the rest of my life. The past six months I had begun to feel concerned that the headaches had become more and more severe in spite of my best efforts to change my diet and I had had a chronic right-sided earache upon rising in the morning for at least six months.

    Just so happened that I went to my natural pathic doctor two weeks ago to discuss hormones and when I described my odd symptoms to her she suggested that I might indeed have Lyme disease. I said “well I’ve been tested twice and taken a heavy round of antibiotics three times”! She informed me that the only Lyme test that is accurate is out of California.

    The test costs about $200 which I do not currently have. So she suggested that I might try a round with a tincture called Byron White AL formula.

    I started taking the tincture two weeks ago and after three days the debilitating exhaustion in my eyeballs left and has not returned. My morning headaches and the ear pain have almost completely left and I’m finally feeling normal after seven years.

    I can’t quite believe that this is possible but it is and one day I may just exhale….

    Pam

    • Pam, it’s great to hear that you have found a cure for your illness. As I learn more about chronic fatigue, it seems that there are many conditions that lead to similar symptoms. Different treatments may work for different people. For the past decade I have worked at “containing” my condition, but I am now actively experimenting with food groups to see if there is anything in my diet that could be making the situation worse. I will report back on this blog if I find a cure!

  5. Pingback: The Chronic Fatigue Cure | Blog Blogger Bloggest

  6. This piece is really inspirational and shows all ME sufferers to not give in to the horrible symptoms. Keep up the good work, mate!

  7. Have you ever tried getting your hormone levels tested and balanced to help with the symptoms? I’ve read that having ME-CFS can cause hormonal imbalance (such as Human Growth Hormone deficiency) and was wondering if getting these corrected if it would help?

  8. My supervisor has MS and she fights in a similar way for similar reasons. I love it that she’s not giving up except her bouts out of work are more and more. I know one day she won’t be able to work anymore and it is unfortunate since she’s single and she has a middle-school-aged daughter.

  9. For many, many years I was treated for depression, experiencing deep cycles of fatigue, not attending my work schedule, days upon days not leaving my bedroom. During that period, I took many different types of anti- depressants to where NOT any worked for me,
    Also during that time I was also treated for hypothyroidism , taking synthroid to stabilize. In Dec 2013 I was diagnosed with Positive CFS via blood test and trying to learn more about this. I believe its been the underlying factor of my depression, inability to maintain employment, isolation and loneliness and so on. My life has been downhill like a snowball headed for hell! My emotions and well being has been compromised, as well as my finances. I retired early from my 65K year job of 25 years, I would have quit due to my poor attendance record anyway. Now, I’ve depleted all savings and retirement, cant live on my small pension, home about to go into foreclosure and filing bankruptcy. I just filed for welfare assistance( food stamp). I am really devastated and in a lot of fear!!!!! Any words of encouragement will be greatly appreciated!

    Jeff in Ga!
    478-955-8101

    • What can I say, Jeff? I can’t say I know how you feel, because your situation is much worse than mine. I’m not American so I have no idea what financial help may be available to you. I just wish you well and hope that you will be able to recover now that you have retired from work.

    • Would you be interested in bartering for counseling services? We are online friends via my blog called PowerThinkingNow! I can do coaching/counseling and teach you some valuable techniques to help you see through the suffering. I’m open to barter and sure we’ll find something…We can use skype or facetime.

      Pam

  10. Your blog is my life, almost word for word. My symptoms began in 1999 after presenting at an international conference. I came home with a “virus” and my path since then parallels yours. Never easy, still frustrating and a continual learning curve on how to survive with the energy I have. While my life has changed dramatically from what I thought it would be, there have been blessing derived from completely stopping the journey I thought I should be on and accepting the life I have been given.

  11. I think it is wonderful you are able to do yoga and maintain a success in your business! As I read your message what stood out most to me in your m was the fact that you lie down as soon as you feel tired. I always feel tired and as a result feel I have to push myself to get things done. If I didn’t I’d never get up. On days that I feel relatively better I try and get it all done. The result, back in bed for two-three days. I’m becoming more and more ill. A walk use to be good for me. It now sets me back. I’m an artist and I have recently developed frozen shoulders. It is quite depressing. I try and stay optimistic. I often watch medical shows of folks far worse off than myself. It doesn’t help me to feel better though, lately I feel like I’m in a fog and I feel very isolated and alone. Whaaaa!!! yes it sounds like a lot of poor me and I can’t believe I’m even writing this. I think something inside me is dying and I’m crying for help.

    Shelley, 47yrs.old, suffering for 6 years.

    • Shelley, thanks for taking the time to comment. I’m 46 and I’ve had CFS since I was 30. My personality type makes me a very driven person, and I always want to do more. However, I’ve learned that if I push too hard I will flip into a fatigued state that can last for literally months. During that period I can do almost nothing. So I have to hold back. I have become good at sensing when I am vulnerable and I stop work immediately and lie down. I have harnessed my obsessive personality type so that instead of working obsessively, I obsessively safeguard my fragile health. As a result, I haven’t experienced a full-blown CFS incident for about 3 years now.

      It would be very difficult for me to do this if I had a regular job. I am fortunate to run my own business, so there is no boss to complain if my hours are erratic. As an artist, perhaps you are in the same position? If so, you have a big advantage, if you can discipline yourself to work less!

      I do find yoga very helpful, as I can do (very) gentle yoga even when I am ill. It’s like a continuous thread that helps pull me through.

  12. Thank-you for your reply Steve. Yesterday I slept all day and today I woke feeling better. While getting groceries I begun feeling fatigued, again. I thought about what you said, stop and lie down. I resisted the urge to continue on to another errand. I have never stopped for a period of time to allow myself to get rejuvenated. As you wrote you had to stop for months. I have never been able stop. My body is stopping me from illustrating with the frozen shoulder. I cannot work like I would like too. I wonder if it is possible for me to just rest and lay low for a couple months, that seems like an eternity , like 6 years of CFS is not? I’ve been warned that my shoulder situation will not get better either if I don’t, STOP!
    I too Am someone who cannot stop once I get going on something. When I draw I may draw for 4-6 hours. I had a huge goal set for an exhibit in a year, or so I had hoped. The easel stands in the livingroom corner and my pencils lie in their box untouched. An artist who can’t create is much like a horse cooped up in a barn unable to run. My mind so wants to work, my body does not. I have an apt. later this month at a center for CFS. I do so hope they can teach me to pace myself.
    I’m really starting to see the correlation between people with personalities like mine, perfectionist, driven and stubborn, we suffer the most..
    I don’t have a regular job, I had to give it up when I became ill. Luckily I have a supportive husband. I Am going to try and let the work be quiet for awhile. As I write this I feel lightening pains of anxiety. My fear is that I will lose my abilities, as drawing is much like exercise and keeping fit. You can’t just stop and then pick it up where you left off.
    Hearing you say you have had years of relief does make cutting back feel like it would be worthwhile if I could achieve a level of wellness. I tend to go until I literally cannot go anymore. Okay than let’s reiterate, feel fatigue, STOPand lie down, I will take your advice, (she said with a cringe).

    You are living proof it can get better, I appreciate the share very much.

    Thank-you,
    Shelley.

  13. I have Lymes for over 30 years. I hear every word you said. Stay calm and happy!! :)

  14. Thank you for this. I’m 38. I was diagnosed w/ CFS in 1987 in the 5th grade at the age of 11. I’ve been judged my whole life since by various people who just don’t “get it. ” I work full time, but there are weeks where I sleep from the time I get home ’til the next morning.

    • It’s hard, isn’t it? I didn’t ‘get it’ before I had it. People have no experience of such illness, they think it’s your fault somehow. I’m sorry to hear it affected you from such a young age.

      • Well, I will say this: God has used this “thorn in the flesh” to create in my heart more compassion towards others. I truly do have a compassion and empathy towards anyone who lives with this to a level I never would have if I didn’t have it myself. In the midst of this lifelong trial I choose to cling to the TRUTH that God is GOOD all the time and all the time God is GOOD! ! Keep blogging! ! We appreciate your wisdom and insight!

  15. Hi Steve,
    My physiotherapist was diagnosed with CFS and was advised by her friend to see a Chinese herbalist immediately. Due to the nature of her work, she knew she had to nip the illness in the bud and quickly made an appointment. She described the dried concoction of herbs that she had to boil, as smelling like, ‘jock straps,’ and had to force herself to drink it for a set period of time. I would have found it hard to believe, but she was fine after the treatment and is still going strong.

    The herbalist moved so she never found him again and therefore couldn’t pass his contact details to others.

    If he could help her at the beginning of her illness, perhaps there may be Chinese herbalists who could help post-illness. Alternate treatment cannot be idly discounted and as Shakespeare wrote in Hamlet, ‘There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy.’ This is not to quash anyone’s hopes but it is best however, to be canny and selective … there are doctors and there are physicians and it is best to ask around for recommendations before rushing to the nearest Chinese herbalist. That is just a suggestion.

    My best to you Steve and thank you for raising the issue and writing about it. It helps me to understand the journey of a CFS sufferer.

    • Thanks for taking the time to comment. I would be interested to hear from anyone else who has experience with Chinese medicine. I keep my CFS under control by managing my expectations about what I can achieve each day, but it would be nice to find a cure.

  16. Yours is one of the few articles I’ve read that mentioned men being affected. I know that no one can understand the profound fatigue unless they are going through it.
    Five years ago I was diagnosed with Myasthenia Gravis. My friends could not understand my fatigue, nor did they believe it, until one of them went on-line and looked it up. I barely had time to adjust to managing life with MG before they tacked on Fibromyalgia and Epilepsy. I already had Hypothyroidism since my 30’s. Energy and muscle strength were now a thing of the past.
    I had to quit my job and go on disability. I needed something to do so I took up writing and blogging. I spent time researching causes for all the neuromuscular disorders I noticed, but I could never find anything definitive. The two biggest concerns were stress and food additives.
    My job as a Home Health nurse had become super stressful the last few years and, frankly, I don’t believe anyone knows precisely what’s in our food; especially the combined effects over a person’s lifetime.
    I’m trying to eat more healthy (should have been doing that all along, right?). I follow several other blogs that discuss all the issues related to chemical sensitivities which seem to be a huge contributor to fatigue.
    Almost two months ago, I added magnesium to my arsenal of vitamins and medications. It stopped the muscle cramps which the potassium alone was not doing. The added benefits I had not expected included: a decrease in pain and shortness of breath; improved endurance and strength; thicker hair and stopped the falling out; decreased skin issues; weight loss (hurray!!).
    I thought I had finally gotten the magic pill. I took short walks, cleaned house, and could focus on my book. Then this weekend happened. What was different? Have no clue. My grandson and I walked across the street to the store, but he carried the small bag back. MG does not do well in heat, but I still managed to go to both church services on Sunday. By Sunday evening I was useless and spent most of Monday in bed, missing yoga and my evening class.
    Ways that I have found help fatigue: eat small light meals – heavy meals tire me out; it seems all my energy goes to digestion!
    plan daily activities – Sunday thru Wednesday has one outing each day, so I try to pick up Rx or quick stop for a few groceries. Too much driving wears me out!
    allow for rest breaks – many lunches I spent driving and eating. I had a tight schedule and was often 30 minutes between patients. I stopped doing that and started eating inside. Now that I’m home, I take naps. Getting horizontal helps more than simply sitting in a chair.
    do something relaxing – I’ve taken painting and crochet classes; joined our local rock and gem club; and got back with the Writers’ Guild.
    I wish you the best with dealing with your fatigue, and hope that some of the things that work for me will help you. It was a hit and miss thing with me for years. I’ll keep you in my prayers.

    • Hi, thanks for your comments. I have two friends with CFS and they are both men. It is frustrating that these fatigue conditions are not better understood by doctors, but it’s possible that there are many different causes and effects. Everyone seems to find different methods for treating it, so I guess the best we can do is to try different things and objectively monitor the effects.

  17. I am facing your 15 years ago situation now! But Thanks for sharing your personal experience and motivation. I was a bit uncertain about my own life few days back and had those negative thought all around. It is when my doctor said that don’t baby the baby inside you because you aren’t the only one who is troubled. I kept on thinking about what she meant. I think she was right :)
    Anyways, Thanks for sharing, it mean a lot for me!

    • I wish you all the best and hope you will be well.

    • Wow your Dr. seems a bit too blunt. Your smiley face however is encouraging. It is hard to not be a self centered when you have no energy and watch everyone else around you continue with a “normal” life. But in reality everyone has issues of some kind or another. What I have discovered is if I “listen to my body” and rest immediately when I am tired instead of pushing myself, I get over a “relapse” much faster. Admittedly when I am on the couch again I often get angry at the unfairness of it all. Hang in there, hopefully the “bad” days will become more and more “good” days.

      • Haha I prefer neglecting her bluntness over her honestly. She said so because I was behaving a bit immature and depressed. I second your thought, yes it is indeed difficult to neglect the ‘self’ but then I haven’t seen anybody with a perfect life. I think life is not about having struggle or peace. May be it is about finding peace in the journey or ‘more’ struggle and ‘less’ struggle :)
        Thanks for your kind words!

  18. Pingback: Living with Chronic Fatigue Syndrome – a survival strategy | Cool lady blog

  19. thank you steve for your insightful blog. i’ve had CFS for almost 25 years and have learned through years of experience that when it comes to day-to-day activities i have to pace myself — and stop when i’m tired. but often, on days that i do feel good, i still misjudge a good stopping point, and as all those with CF understand, once you’ve gone past that mark, you’re bound to get sick (for me it’s headaches, insomnia, overall feeling unwell — the flu-like symptoms that i used to get have dissipated over the years). that’s why i try to use the 50% rule: do 50% less than what you think you are capable of.

    i’m curious if followers of your blog were diagnosed with CFS after contracting a major virus (for example, mono) and if autoimmune disorders run in their families. it does mine and i did have a major virus first. i’ve read where many CF sufferers first had a virus, then developed CFS. also, a few years after being diagnosed with CFS, i was diagnosed with hashimoto’s thyroidistis, which is common amongst CF patients because the immune system eventually attacks the thryoid and shuts it down. and, hashimoto’s is considered an autoimmune disorder in and of itself.

    i don’t live my life in hopes of a cure soon as i often read scientific journals and believe there’s more years of research still needed. i have tried many things to alleviate symptoms, including diet. and although i believe an healthful diet (organic, free-range, etc.) can help, i don’t believe it’s a cure. what i find does help is moderate exercise, pacing oneself, lots of rest, a line of work in which there’s flexibilty for your health needs, friends that understand and accept your limitations and never losing hope that all lives, despite limitations, have meaning.

    • Thank you Marnie, my experience is almost exactly like yours. A viral infection triggered CFS, but I don’t know anyone in my family with similar conditions.

      Most days I am fine, but like you say, I must manage my workload and expectations extremely careful. If I cross the invisible line, disaster awaits.

      As with you I find exercise helpful (as long as I don’t cross that line and do too much) and I am getting some benefit from including a lot of green veg in my diet. I wrote about this here: http://blogbloggerbloggest.com/2014/01/30/foods-for-energy/

  20. Hi Marnie, My CF was also triggered with a virus that started with pneumonia then I was diagnosed with mono and finally over a year later when I was totally disabled the Mayo Clinic diagnosed coxsackie B virus. This was in 1999, I now work part time and have found that bike riding is the very best way for me to work my heart without overdoing it. I am still working on finding the right balance and have had two major relapses this year.

  21. Hi Steve, Well it has been 3 months and after I’d wrote you last I became almost completely bedridden. I was seen at a center for CFS sufferers and was given a test for a condition known as Postural orthostatic tachycardia also know as POTS. If you have not heard of it please research it on the net It is sometimes found in CFS suffers. With POTS it is often unclear as to which came first, the chicken or the egg. Knowing I had this syndrome allowed me to feel much more validated in taking care of my health as I now had concrete physical evidence. Personally I needed that to really be able to accept that I did have a real illness that was affecting my heart rate, causing fatigue, weakness, etc…
    I have recently found a very helpful medication, quite by accident. It has givien me unbelieveable relief for my CFS and POTS. I’d been prescribed codeine phosphate syrup, 5 mg, a dose of 6 ml which is equivalent to one tylenol number three, 2-3 times a day, for pain I was having. I discovered that not only did it relieve me of my pain it also relieved me of my fatigue and weakness. I went from being bedridden to up and moving within 25 minutes of one prescribed dose. The colour in my face came back and my heart stopped pounding. I am fully aware of codeine being an opiate and the addictive qualities of the medication.The Last thing I wanted was to have a codeine dependency. Having realized this I also had to take into consideration that I’d found something that undoubtedly relieved me of quite a bit of suffering. I booked an appointment with my CFS specialist and related my findings to him. He had only heard of one other case of this medication being helpful with POTS. I knew he’d be concerned about me becoming dependent so suggested he I keeping a check on me by prescribing me the medication bi-weekly. I’ve been taking two doses a day for over a week now and although I know I can’t run any races it sure is wonderful to be able to get out of bed, get dressed and make dinner without keeling over. I feel I have some life back in me and after almost 8 years this is for me no short of a miracle. I really should contact the show ” Mystery Diagnosis” as this is a medical mystery which I’ve found treatment for on my own!
    Having said that, i still need to rest and realize this is helping with my symptoms and not curing me of the illness itself. It much like a diabetic receiving insulin. They couldn’t now go eat a slice of chocolate cake, lol.

    Shelley.

    • Shelley, great to hear that you have found an effective treatment for your condition. It does seem like there are multiple conditions/causes at work amongst CF sufferers, which is perhaps one reason why the medical profession seems slow to tackle it effectively. My condition is nothing like as severe as yours, and in fact at present seems to have almost disappeared. I recently wrote about my experiment with food, and since I started eating a daily portion of spinach / broccoli / asparagus / watercress, I have almost regained my previous levels of energy. Hope your road to recovery continues!

  22. Thank-you for the reply Steve. I’ve heard asparagus is especially detoxifying to the body.Glad you are recovering so wonderfully!

  23. Steve–
    First thing I notice is what an excellent writer you are – surely you must use that skill in your business (or is it just your quality of thought reflected in written words?). I’m also impressed by the fact that you never talk about “fighting” or “overcoming” your condition. That’s always struck me as foolish–and very Western–given that we would then be opposing our very selves/bodies, which are under assault and doing whatever they can to restore us to health.
    All that said, I was diagnosed with CFS back in ’87, though it does tally with my “personality” (high-achieving, idealistic) and, importantly (I think), with the serious emotional stressors of my childhood (familial mental illness). Many herbs and approaches have helped me at different times, and I somehow never tire of experimenting. Truth be told, however (and weather aside), it is always some significant (and usually prolonged) life stress that seems to trigger a period of debility.
    As for the spiritual, at the age of 61 (and even after a near-death experience), I no longer seek or expect help from that realm, but simply try to honor my responsibilities as best I can. I’ve been fortunate enough to have many careers (visual artist, therapist, published author), and I seek each day to find something (goal or attitude) that provides me with HOPE. And while the word may seem sticky to many of us, I now believe that love–in its various forms–is all we can offer one another. So I have taken some time to thank you for your words, and wish you strength, resilience, patience, and success on your path.

    very best,
    GARY

    • Gary, thanks for your very kind words! Your story sounds rather like mine. I learned quite quickly that my instinct to “fight” CFS probably made it worse. Roll with the punches – not easy for people of my personality type, but perhaps the best approach. As mentioned, I have been packing a lot of green vegetables into my diet for the past 6 months and am feeling very strong at the moment.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s