If you walked a mile in my shoes, you’d fall down

I try to keep all my writing on the subject of fibromyalgia/chronic fatigue syndrome/myalgic encephalomyelitis on my other blog, Tired Girls.  I do enough complaining here without making you read about my pharmaceutical bills as well.  However, I’ve recently had some experiences where people who read this blog have been confused about the state of my health, so I wanted to try and explain what it’s like to have FMS/CFS/ME.

My illnesses are not “all in my head”.  Sadly, used to think they were all in my head, and assumed that with willpower, I could make my symptoms vanish.  It didn’t work.  Ironically, the more I push and fight how I feel, the worse I get.  I know your thoughts are well-intentioned, but I cannot just “get over it”, and I cannot just “try a little harder”.  My symptoms will not magically disappear if I “spend less time in front of the computer”, or “get some fresh air”.  My illness may include the word “fatigue” in its name, but it’s not a fatigue you’ve ever experienced, unless you’ve perhaps had the flu.  Have you ever woken up sick, achy, feverish—so sore that it hurt to put your feet on the floor, so tired you barely had energy to walk to the bathroom?  That’s how I’ve felt just about every single day for the past ten years.  Every morning, I force myself to get up, and to earn a living, and to care for the pets, and some days it’s so difficult that I can’t bear to climb the stairs.  The mere fact I get out of bed every day makes me a superhero.

I have my own FMS/CFS demons that I fight with.  There’s still a small voice in my head which feels guilty if I need to take a nap.  There’s a part of me which wonders if I am just being lazy, and if I should keep trying to push through the pain, because I forget that how I feel isn’t the norm.  I can’t remember what it was like to live without pain, and I find it hard to imagine that there are people who get up in the morning, or who get up from sitting, and who feel good.  I don’t remember what it’s like to feel energetic, even though I was a long-distance cyclist when I first got sick, and used to love working out.  I can’t remember what it was like to easily carry a 40lb. bag of cat litter—now I have to buy the 20lb. bag, because it’s the only one I can lift.  Even worse is the mental fog - I have trouble thinking clearly to write or research unless I’m aided with medication.  When I write blog entries, I’m medicated so my brain can focus on thinking and not on pain.  Given that I make my living by writing, you can see how this problem can be a challenge and a nightmare.

A big issue for me is that every little stress makes me feel worse, even just the stress of a changed schedule.  I have to budget my energy if I want to leave the house.  Flippy and I try to plan no more than two “events” in any given week, because we need time to prepare and time to recover.  This causes some family strife, because we can’t just drop everything on a whim and join the family for a meal or other get-together—we have to specifically plan and budget our resources ahead of time.  We’re not anti-social, we just aren’t always capable of expending the energy.  Also, please believe me when I tell you that I know I’ve gained weight over the past three years.  It’s not like I haven’t noticed, and I can’t rectify the problem with exercise or dieting.  Some of the weight was brought on by medication, and some by inactivity, but I’m not capable of exercising anymore.  I’d like to be, and I hope to find a medication which will allow me to achieve that goal, but right now my doctor doesn’t want me attempting anything other than light swimming.  My physical condition is not a symptom of a lack of fortitude.

Anyway, I guess this is the end of another of my semi-pointless rants.  I’ve always been a “Type A” personality, and I’ve been a go-getter and an over-achiever since I was a small child.  I never wanted to be told that there was anything I couldn’t do, any goal I couldn’t realize.  I lived an unconventional and exciting life, and then I fell ill with a disease that holds me back.  I hate sitting in one place, I hate not being in control, and I hate that there’s now a force in my life which is stronger than my willpower or my motivation.  More than those things, I hate that some people now perceive me as lazy!  I wish I could trade bodies with those people so they could see how I feel, but the joke would be on them… I wouldn’t give their body back.

Tomorrow, I’ll try to blog about kittens and puppies or something warm and cute smile

Posted by Leigh-Ann on 02/05 at 12:47 AM

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  1. What the heck...your post makes me very sad you sound upset.  What brought this on? We know you work very hard, take on-line classes, do so much for animals in need. What brought this on..get that smile back on your face.

    Ilona

    Posted by Ilona  on  02/05  at  08:24 AM

  2. I wish we all could know what each other faces. I wish there were more effective treatments than ‘light swimming’ and the fist full of pharmaceuticals that help a bit and are chock-full-o-side-effects. I wish you could completely believe in your heart-of-hearts that this isn’t in the least little bit in your head.

    I’m glad you have someone as understanding as Flippy in your corner.

    Posted by Diana  on  02/05  at  09:10 AM

  3. Fibromyalgia is not a psychological problem. It seems likely that there is an initial infectious agent that causes some kind of immune system response which perpetuates. In time this disease will become understood.

    Analagous diseases such as Lyme Disease - gave some very similar symptoms (and since 1980s are now known to be caused initially by a micro-organism.

    Sarcoidosis and ME are other diseases that are not (yet) fully understood. All these illness produce system-wide effects (lethagy, aching etc) which don’t have objective measurements.

    I know people who have had problems - courage and a strong mental attitude help them to live their lives. Take Heart!

    P.S.

    I like your idea of trading bodies!

    Posted by The Real Witch  on  02/05  at  09:55 AM

  4. Looking forward to blog on Cats

    Much more up my street (also v. good for lowering blood pressure I believe)

    Posted by The Real Witch  on  02/05  at  09:58 AM

  5. Have you ever heard of the Spoon Theory? I forget where I first read it, but it helped make clear to me what people with exhausting chronic illnesses face. I know she’s talking about Lupus, but I think the idea still applies. Perhaps this might help light it up for people who don’t understand what you’re talking about.

    I think it’s amazing that you do all the stuff you do--working and taking classes and caring for all your animals *plus* fostering. I don’t know if I could manage all that!

    http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

    Posted by Helena  on  02/05  at  12:08 PM

  6. Thanks for the good thoughts, and Helena, I love the “spoon theory” blog!  I wrote about it on Tired Girls.

    Piffle, one of the big problems I have is that pharmaceuticals do make me feel better, but I can’t afford them.  I remember we had a big discussion about drug reps on your blog a while back smile I currently take about $400 worth of meds each month, with another $300 worth that are optional, and which I usually pass on.  Flippy has been really helped by the drug “Lyrica”, but her insurance company won’t cover it, and it’s about $200 per month.  I’d like to try it, but not just yet.  That’s a reason I really want to get well enough to work at a vet’s office—great health insurance!

    Posted by Leigh-Ann  on  02/05  at  07:31 PM

  7. I’m really glad the pharmaceuticals do help you. So many I’ve worked with have had some improvement in symptoms but not as much help as we’d want.

    We need to make medication affordable for everyone. End of story.

    Posted by Diana  on  02/06  at  07:44 AM

  8. There are days I have trouble focusing on any work at all. And I feel so guilty when I can’t. If only I was able to pull my share of the weight in this relationship, we’d be better off. I hate feeling like an albatross around my sweetie’s neck. You do a lot more, I think from this point of view, and feel a lot worse than me, so I got a lot of admiration for you.

    Posted by Georg  on  02/06  at  10:00 PM

  9. It’s all relative, Georg… at least I can leave the house safely, without worrying what I’ll encounter, and I get enjoyment from fragrances.  I wouldn’t trade with you!  I just get frustrated when my mind’s reach exceeds my physical grasp, because there’s so much I want to accomplish.  And this post was rooted in my other frustration of people not understanding that I’m “sick” because I “don’t look sick”.  It’s sometimes implied that I should be capable of doing more than I do, and it really ticks.me.off.

    Posted by Leigh-Ann  on  02/07  at  02:22 AM

  10. Diana, the pharmaceuticals work to a degree, at least enough to make me functional, if not “normal”.  I need a couple types of narcotic pain meds, occasionally need a muscle relaxant, I need something to help me sleep, and then I often need a mental stimulant to allow me to think during the day.  Sometimes being pain-free ensures mental clarity, but it doesn’t always.  And then, I wrap the whole ball of pills up in an anti-depressant, because for some odd reason, I may be depressed wink Occasionally I taper off everything, because I do start to wonder if all my medications make me worse, but nope—things are a lot worse without them. 

    As a doctor, the best thing you can do is to make the effort to help, even if complete relief isn’t achieved.  Knowing that my doctor believes my symptoms makes all the difference in the world!

    Posted by Leigh-Ann  on  02/07  at  02:31 AM

  11. Hey CHickie!!!

    How are you!!  Lost your email, you must send it to me!!!  Thanx for the Xmas postcard, always wonderful to hear from you!!  Take care!!  Franca xox

    Posted by Franca  on  02/07  at  02:20 PM

  12. Nobody knows yet what causes fibromyalgia?  Initial infectious agent, one commenter said, then the body maybe forgets to stop reacting to it?  Or maybe it’s still there, hidden away, and certain triggers suddenly activate, making you tired.  Maybe certain chemicals, in food or drink, trigger reactions to waste products or trigger encysted initial infectious agents to live again.  Well anyhow, what a puzzle, a tragic one at that. Doesn’t Lyme disease often include four or more different types of infectious agents, most difficult to be rid of?  Maybe lysine, if its an initial viral agent, would help if you took it daily, you know, same as people with HIV, cats with FIV, people and cats with herpes, etc, do. 

    What happened to you, do you remember, just before you became ill the first time?  Maybe there are clues.

    Posted by Jody  on  02/18  at  10:53 PM

  13. Jody, there’s some thought that Chronic Fatigue Syndrome and Fibromyalgia may be related, which would give FMS a viral origin (like Epstein-Barr).  There are some clinical trials which are trying to treat chronic fatigue with antiviral drugs, and they’re showing promise, so it’s something I’d be willing to try.  Otherwise, there’s no “home remedy” that I’ve ever been able to find - not herbs or vitamins or any other supplements.  What works best for me is lots and lots of sleep (nine hours per night is optimal), and pain medication.  I had a weird viral infection when I was a teenager - something like mono, but not quite mono.  It kept me exhausted and in bed for weeks, so perhaps it was still in me and was reactivated a decade ago.

    As for what caused the onset, I’m sure it was severe stress.  Not everyday stress, but severe stress, like the stress of living in utter terror for months on end, and the stress of dealing with a multitude of highly emotional and even dangerous situations in a short period of time.  The kind of stress that can make you lose your mind.  I kept my mind, but lost my body.

    Maybe I should give the L-lysine a try.  In fact, I’ll start tomorrow!  I’ve got an extra bottle of pills that I was attempting to crush for the cats, but it became a bother so I ordered powder instead.  I’ll research the dosage online and let you know if I think it helps.  Thanks for the suggestion!

    Posted by Leigh-Ann  on  02/21  at  01:57 AM

  14. Franca!  I suck so much for not emailing you.  I will, one day soon.  I think about you often.  I work on commission, and on the computer, so I feel incredible guilt if I’m online and not working.  That’s how I get (years) behind on my emails.  I miss you… now that I have my green card, maybe I’ll finally be able to see you again.  I bet we’re both so old wink

    Posted by Leigh-Ann  on  02/21  at  01:59 AM
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