Blaze of Glory

Pacing is . . . actually, my descriptions of pacing generally involve expletives that are not appropriate for this blog, so we’ll stick with “Pacing is challenging.” One positive side effect of my pacing efforts, though, is that I am still celebrating my birthday one month after the fact.

Last week, I went out for a birthday lunch with Friend K. We’ve been friends for 22 years now, and K knew me for four years before I got sick. We went to law school and took the bar exam together, and undertook a mammoth road trip together. When I started dating my husband, K was the first friend I asked to check him out. Hanging out with K is great because she really gets the illness, and so I don’t have to talk about it but I can if I want to. She told me the latest stories about her sons, and generally made me laugh my ass off. For a few hours, I felt like a normal person having lunch with her best friend, and it was glorious.

I also went out for a birthday dinner last week with Friend M. I met M soon after I got sick, and she is another rare gem: a friend who gets it. M and her husband read a prayer at our wedding, and she is one of the most loyal and giving people I know. For my birthday, M took me to one of my favorite local restaurants for dinner and we closed that place down. The meal was sublime, but having M’s undivided attention for four hours was even better. She told me some great stories about her eight year old daughter, including the “court proceedings” in which M has been accused of posing as the tooth fairy. I felt just like the women at the table next to ours, enjoying a girls’ night out with one of my closest friends. These moments of normalcy, of interacting with the world the way I used to, are so rare and precious.

And then there was the payback. The day after that dinner, I was crashed but I didn’t care. It was totally worth the pain and post-exertional relapse. I was still high on the joy of being with my friends. But then I was crashed for two more days, and I started to question the price of normalcy.

My attempts to implement stricter pacing techniques have challenged me far more deeply than I expected. I’m questioning everything now. Before the exercise testing, I was absolutely convinced that having occasional episodes of normalcy was worth the crash days. Outings like these feed my spirit and make me so happy. But now I wonder if it’s the right thing to do. Do I have to give up the last few remnants of my healthy life in order to cope with my sick life? How do I strike the right balance between accommodating my physical limitations and hanging on to who I am? What else do I have to give up in order to live crash free?

I feel like these are deep, existential questions. For 18 years, I have sacrificed my body in order to enjoy occasional outings with my friends, to participate in CFS advocacy, and to take care of my family. If pain and crashing was the price of continuing to participate in my life, I paid it gladly. But is this the right way to balance the equation? Is having dinner with a friend worth three days in bed? Facing that consequence is not fair, and I don’t want my life to be this way. But this is my reality. I need some kind of owner’s manual to tell me how to figure this out. Do I punish my body by exceeding my physical limits? Or do I punish my soul by living within those limits? It’s a no-win situation, and I don’t know how to answer these questions any more.

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13 Responses to Blaze of Glory

  1. Jenny says:

    beautiful and so right on. I feel the same way , a day or dinner of normalcy worth the price, until that price goes to two weeks, two months… but what is life if we don’t attempt to live it? I don’t think that not letting ourselves have those times would help. Our soul knows what we need and when it says YES! We must. Perhaps on your next birthday there will be less of a payback for the celebration, perhaps we can just be grateful to have one more dinner with friends. <3

  2. LJ says:

    it doesn’t sound like much, but maybe one “outing” a week – or every other week — esp. since they are so intense in friendship and several hours long – just thinking!

  3. Anne Ö says:

    Thank you so much Jennie for this post. I am constantly asking myself those same questions (though my activities are on a smaller scale). What worries me is the long-term effect of allowing myself to crash regularly. Is this in fact contributing to my ME/CFS, making it worse? In that case my soul is happier for doing small things like a phone conversation or a short visit from a friend, but my body is actually getting worse, or at least not getting better – and that sure isn’t benefitting my soul in the long run.

    So difficult, this!

    • Jennie Spotila says:

      Yes! I worry that crashing may be harming me in the long run as well as the short run. And it drives me crazy that no one can tell us for certain.

  4. Suella says:

    No, I feel nothing but the biggest emergency is worth a relapse. Flares, which might last for a few days or a week or two perhaps. Just perhaps something precious might be worth it, but how do I tell? I would need to pace very carefully around such an event to make sure I was in as best possible rested, fed and stress-less condition as possible.

    But relapses, where my body feels toxic, is on constant adrenaline and lies about how I feel and when I should rest? I never want to trigger another one of those again. They take many weeks to feel better and I come out of them weaker, and more vulnerable. My new “normal” is well down the scale that I was at before and it takes many months of 1-2% improvement before I am back to my pre-relapse.

    I know that for me ground rules for delightful outings need to be set before hand. Tools, such as a portable folding stool, time limits, and maybe even a chance to lie somewhere flat eyes-shut for a few minutes with a yoga mat I find really extend the safe time that I can be out in an exciting social situation.

    I have learned that Social outings or learning creative techniques at college is my prime High Activity stressor. I release a lot of adrenaline with the attendant excitement and fun. Rest days before and afterwards as well as time-limited sessions can keep me from overdoing it.

    I believe that I am damaging my metabolism, mitochondria and my ability to make energy both when I flare and certainly when I relapse. I think I am doing myself long lasting and even permanent damage as it seems to take longer and longer to “recover” from even just a flare. With care I know that I can be nearly symptom free and I want to keep it that way.
    This means a great deal of determination and application of pacing behaviors which I know work for me.

    Friends who understand me enough will also be prepared to ask me, or tell me that it is time to have a rest, or that we have stayed out for the previously set time limits. They don’t want to be complicit in a crash leading to a flare or relapse, and I don’t want to put them in that position, making them feel guilty, and less likely to want to socialize with me.

    But we are all different. I continue to learn what my myriad of energy envelopes hold, and how the combination of behaviors, actions and pacing improve my life or at least keep it consistently low or no symptoms.

  5. Suella says:

    The concept of energy envelopes is one used by Bruce Campbell in his classes for people with CFS/ME. He identifies a range of them, not just physical, but social, emotional, mental, environmental etc. Each of his students in my class seems to have different areas where we are strongest, and are weakest. The time of day that I do things makes a difference in how I cope with the activity.

    Currently, in the class I’m in we are looking at Eliminating Relapses, what the riggers are and how to control stressors. I feel I’m gaining broader perceptions of what affects me personally and how to go about controlling the problems. I’ve recently flared and after two+ months seem to be feeling better, but I know I could easily slip back into nor recognizing when I am overdoing it. My set of personal rules has had to be tightened and further rest periods introduced into my pacing.

  6. Its such a tough one. We all need soul food. But I think we need to find new ways of finding it. We need to renegotiate how we have fun with friends and ask for their cooperation in managing time limits. Does it really have to be all or nothing? or are the ways of keeping quantity to a minimum whilst maximising quality?

    We also have to find alternative low energy ways of feeding our souls to make up for the fact we can’t enjoy the banquets. If we can really appreciate our daily grazing we won’t need the feasts.

    How much of your normal day is spent appreciating some small accessible pleasure? Is their any way you could increase these without pushing your energy limits? can your friend be involved with any of these small things?

    This is the challenge that I have chosen to persue in order to keep my sanity.

  7. Sally says:

    Good article and one that I can really relate to just now. I haven’t crashed proper (where I loose my co-ordination and speech fluency) but today I know I’m having a mini-crash…. just certain things aren’t right. I felt good last few days, and probably “allowed” myself to do too much – even though I thought I was being very careful.

    I like however to have a few high points, and am trying very hard to find ways of doing what I want on the terms that all those to stay in my life…..

    Such a tightrope we walk!

  8. Sally says:

    Correction to last 3 lines!

    “I like however to have a few high points, and am trying very hard to find ways of doing what I want on terms that allow those things to stay in my life…..

    Such a tightrope we walk!”

  9. Michelle says:

    “Do I punish my body by exceeding my physical limits? Or do I punish my soul by living within those limits? It’s a no-win situation, and I don’t know how to answer these questions any more.

    Boy do I hear ya, sister (even if it’s taken me several days to type out my comment)! While pacing has provided me with something deliciously objective and numerical — which is so lacking in the ME/CFS experience — it also has left me more frustrated and isolated than I have ever been in the 13+ years with this illness. Merely sitting up to eat or go to the bathroom most days sets off my heart rate monitor alarm. When my primary care provider visits, I have to turn off the alarm because otherwise it would be going off through the whole appointment if I didn’t, mostly, I suspect, due to the sheer rush of adrenaline at being able to interact with another human being for an hour! So how does one feed the soul when even feeding the body sets off the alarm?

    Pacing is clearly effective at managing this disease for those with mild to moderate ME/CFS, and I’m very happy that it has been able to slowly provide a sense of normalcy for those in this group who utilize it. However for those of us on the more severe end of the spectrum, pacing is merely a form of treading water in a very stormy, choppy sea while we wait (and wait and wait and wait) for a life preserver – i.e. a genuine treatment. (And underscores the importance of diagnosing and learning to manage this disease as early as possible.)

    Except that one generally does not tread water for decades. While most of us have still managed to figure out how to feed our souls on some level in the midst of the basest of survival, it is difficult to ameliorate our isolation when we are unable to talk, type, or even be touched. Hence, though pacing may be the best we’ve got at the moment, it will never — nor should it be allowed to — take the place of REAL DAMN TREATMENT ALREADY!

    On another note, I just wanted to add that I’ve really come to appreciate this blog, Jennie. I haven’t been able to blog in…er…forever now, and I haven’t seen another ME/CFS blog that articulates so well what I’d be writing if I could (not to mention does it with not only the passion that is so common in the ME/CFS blogosphere but also the analytical thoughtfulness that isn’t quite as common). If I’m too weak to write, it’s at least nice to have someone else saying the words on my mind that are unable to leave to leave my mouth or fingers most days. So…thanks. 🙂

    • Jennie Spotila says:

      Michelle – Yes! Treading water, and not in a good way. Do you think that pacing has any utility for you at all? Is it keeping you from at least making things worse? I think the heart rate monitor has reduced the amount of time I exceed my limits on a daily basis, but I’m not convinced it is reducing crashes overall. I think my overall pain levels are lower, but it’s not like I go through most days with few symptoms. You may be right that it is of more benefit to those who have some capacity to work with. I’m not bedridden most of the time, but am housebound and my activity level within the house is pretty low.

      Thank you so very much for your kind words about the blog. Comments like yours make the work of the blog worthwhile. My mission statement for this blog is “Give voice.” and I’m glad you feel that I’m succeeding in that. Thank you so much!

  10. I was one of the lucky patients with ME/CFS diagnosis that found antibiotics improved my health and led my GP to consider Lyme dIsease – ( my case history supported the diagnosis) on long term antibiotics I have made an excellent recovery but doctors fail to consider Lyme Disease as a differential diagnosis for ME/CFS although Behan report in MRC ME files and NICE guidelines say that it should be ruled out before a ME/CFS diagnosis is given.

    Kenneth Freidman ( CFSAC) in an e mail to me said that research shows that 1/3 of patients with ME/CFS actually has Lyme Disease but it is difficult to get doctors to evaluate their patients. Of course it is rarely just Borrelia but often a multitude of other pathogens and one of the best presentations would be Horowitz You might like to do some research into this aspect of ME/CFS and do a post on your blog or links to research such as Samuel Shor’s research ( a CFS doctor)

    Good luck in finding the causes of your ill health and treating those causes and gaining improved health.

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