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.

28 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?

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  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,

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  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

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  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

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    • 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!

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  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!

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  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?

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  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.

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  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

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    • 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.

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    • 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

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  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.

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  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.

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    • 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.

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  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.

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

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  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.

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    • 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.

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      • 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!

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