Deep Breaths … Deep Breaths …

It has just been that kind of week. Jumping off bridges really isn’t my thing, but I can totally relate to the hold the head in the hands and scream bit. Feeling exhausted and frazzled is a normal state of being with Chronic Fatigue Syndrome, but add a few heaping helpings of family drama and strife, and, well, you know.

Richard thought that he was getting the Waltons as in-laws way back when he first met the clan. Um, no. Now that Dad is gone, they’re more like the Simpsons … on a really, really good day. When I was short, the nastiest town gossip hissed something in my ear about my being adopted. I dismissed the idea at the time, but in the years since I have given the matter a certain amount of serious consideration. I look too much like my dad for it to be true, I suppose, but it would explain a lot …

Chronic Fatigue Syndrome is what all of the nonsense of the past year and a bit has been about, by the way. It took awhile to get to a firm diagnosis for both Stephanie and me, but we got there in the end. Mononucleosis/glandular fever was the start of it back in November of 2004, then it morphed into CFS. Kind of weird that it would happen to both of us, but I guess that we share the genetic predisposition that made it all possible. Luckily we have the “milder” type where we cycle in and out of varying degrees of fatigue. It’s annoying and frustrating in that it limits us to a large degree, but it could be a whole lot worse. Some are totally debilitated by it, but we aren’t, even during the lowest phase of the cycle. On a good day there’s a three or four hour window during which we can go out, or actually achieve something here at home. We’re pretty useless during bad days, and the compromised immune system is something of a drag, but like I said, it could be a lot worse. It certainly won’t kill us and it is getting better, ever so slowly. It doesn’t seem like it on a short-term basis, but when I look back to where we were a year ago, there’s a big difference. So, in a couple of years’ time it will hopefully just be a bad memory. Then Stephanie can get going at her life properly and I can get back to mine.

Now, that’s quite enough of the “poor me” nonsense, so I’ll end the tale of woe right there. I guess that we’re all entitled to a slight quiver of the stiff upper lip now and again, though, aren’t we? Mainly I just got into the CFS stuff so that you’ll know what’s up when the blog goes quiet for a few days or a week here and there, as it has been doing periodically for awhile. Sometimes I’m just too tired to sit at the computer, or the brain isn’t capable of putting coherent thoughts together. The moods swing all over the place throughout the cycle, too, and I really prefer not to blog too much when I’m in a downer. Misery loves company, but there’s enough out there already without spreading mine around.

There, turns out that I didn’t need a scream after all, just a quiet chat. And some deep, calming breaths, of course. Inhale, exhale, inhale, exhale …

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12 thoughts on “Deep Breaths … Deep Breaths …

  1. Don't sign, yawn and deep breath too much though or you will end up with my problem which is chronic hyperventalation syndrome which makes you bad tempered when left unchecked. The symptoms lead GPs in this country to prescribe betablockers, I refused to take these and sought help elsewhere. Who would have thought that something that can affect temper so badly could be controlled by simple breathing exercises?

  2. Hunh, I've heard of other problems relating to poor breathing technique, but never that one, Wosser. Interesting indeed. Good for you for holding out on the “bandaid solution” and getting to the root of the problem. But hey, isn't it nice to have a legitimate excuse for being a bear sometimes? It works for me. “I'm not a moody cow, it's the disease!” 🙂

  3. Dear Eleanor and Stephanie: No doubt, when you were writing this post, you felt it was a bit of a downer. Certainly it did cause me sadness that you and Stephanie are having this difficulty, but at the same time your open discussion of the difficulties CFS can present, made me (and I'm sure other readers as well)feel braver, stronger, more grateful, and more determined in dealing with our own day-to-day issues. Thank you for sharing so openly. With warm regards to both of you,Roberta

  4. Wow! I did not realise that that is what was happening to you. I would be interested to hear more as I often complain of being tired especially when I have done nothing to cause being tired.I had to giggle at your pic of The Scream as it was stolen when I was in Norway.

  5. There are lots of these auto-immune conditions being diagnosed now. Which has got to be A Good Thing; knowledge is power and knowing what you've got empowers you to take control of your condition. Of course it's not always been this easy. I remember that I had no problems getting my Fibromyalgia diagnosis but my husband had to wait years for his MS to be diagnosed.Hopefully you won't go absent too often as you learn to manage the CFS but if you do we'll still be here when you get back 🙂

  6. I know a few people with MS, Fibromyalgia and CFS. My friend with MS seems to be doing well. On the other hand a close family member with CFS isn't doing well. More bad days then good days. It's hard for some people to understand how one feels with CFS. It's not like she wants to lay in bed and feel awful, painful.ect…All I can do is give her support, phone calls..ect…reading, reading on CFS so I can understand what she is going through. Thinking of you Eleanor and hope today is a better day for you. (((Hugs)))

  7. Meh, it sucks some days, Kim, but there are far worse things in life. If I had to go out to work it would be a major problem but, since I don't, it's just annoying and inconvenient, really. Thanks for the thought, but don't diminish your own “issues”. If they bug you, they matter. There are always people worse off than ourselves, but that doesn't mean that we should ignore our own beefs, even if they seem small in comparison.

  8. Thanks so much for the warm thoughts, Roberta. As for the inspiration bit, for lack of a better word, just consider it a small payback for all that you've given me to think about in your blog posts. Yes, even though the comments are sparse, I'm still reading regularly! One of these days I'll be awake enough to both read and comment! 🙂

  9. Yeah, I'm a dark horse, Michelle. 😉 I just haven't droned on about it for the reasons given in the post. I'm stuck with it, and will be stuck with it for awhile yet, so I won't be beating it to death in future, either. Boring! But at least you know why I'm so slack with blog comments and replying to e-mails! As for learning more about CFS, your best bet is to Google it. There's loads of information out there and I'm sure that you can sort the wheat from the chaff. Some sites are sponsored by “alternative” drug therapies or whatever and are total rubbish. But there are really good legit ones that will tell you all you might want to know. Here's a pretty good one to get you started: http://www.cdc.gov/ncidod/diseases/cfs/index.htmOk, so you were in Norway when “The Scream” was stolen. Are you trying to tell me something? 😉 You aren't one of the six currently on trial, are you????? Just wondering. 🙂

  10. Oh, you're so right, Elle. Once you have a known entity to deal with, it's a whole different ball game. You surprised me when you said that you got your diagnosis faster than M. did. I would have thought it would be the other way around as, if I recall correctly, there are definitive tests to diagnose MS. But then, maybe his early symptoms didn't make doctors think about MS. These things vary from patient to patient, don't they? I think that they're pretty quick to jump on that possibility here, but we're in one of the world's MS “hot spots”. I can't remember the stats off hand, but the incidence is unusually high in southern Manitoba. Back when I was nursing I looked after loads of MS patients and experts from around the world came to do studies here because of the high number of cases. MS patients here also seem to deteriorate much more quickly than elsewhere, apparently. Something in the air, water, soil? Who knows? Of course you're right about management being key with any kind of ailment. I'm learning quickly, but the main obstacle is my stubborn nature. It's tough to have limitations after a lifetime of being able to put the shoulder to the wheel and get any job done, regardless of circumstances. How humbling when I can't do that anymore. And I don't do humility well, at least not that kind!

  11. Thank you for your warm thoughts, too, Shining Light. You're so right about CFS being a hard thing for other people to understand. Outwardly we look perfectly healthy most of the time,and nobody who hasn't experienced this kind of fatigue can understand just how it feels. It's not even close to sleep deprivation tired, or putting in a hard day's work tired. It's sheer and utter exhaustion that defies description. I can sleep the clock around and wake up feeling just as tired, and the simplest tasks feel like climbing a steep mountain some days. I remember in the early stages of this I would get up, brush my teeth, and have to go back to bed because I was exhausted just from the brushing action. So, like you said, nobody would choose this, and it's not a matter of not having the will or desire to do things. You just can't, period. If you force the issue, you make things so much worse for yourself. Your relative is lucky to have someone like you to support her. What you're doing might not feel like much to you, but it will feel like a lot to her. Just knowing that someone is there and making an effort to understand is a really big deal.

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