Oh how cruel it is that when you really need to write, you can’t. I’ve been so very sick. Apologies to my friends and family for my neglect of correspondence and birthdays (everyone is born in April). Apologies to my husband for having to pick up even more slack while wading through thicker clouds of my fear. Apologies to my dogs who are not only getting no exercise, but who have been rejecting the recently beautiful spring days to lie indoors in the dark next to their ailing Momma. Yesterday, I took a blanket and pillow outside and lay on a dog bed in the garden so we could all get some fresh air. They danced excitedly about thinking I might actually be trying to walk my daily laps again (long ago they gave up their hopes that I might take them to an actual park ~ my putting on shoes now means I’m leaving them to go to a doctor appointment and they hardly raise an eyebrow) and then sulked with heads low when they saw I was inert, as usual.
I think I am worse overall than I have ever been. This is definitely the longest stretch of BAD I’ve ever had. By “sick” and by “bad” I mean unable to do even the little things and needing to stay in bed most of the time. I have been so dizzy and so shaky. I’m chilled, I’m exhausted, my muscles have retracted into hard, fibrous knots. I have the ever-present headache and sore throat and noise sensitivity. My sleep is dismal; I feel utterly tortured by the loss of quality repair time at night. My bed is a battleground: the covers too weighty, the mattress too hot, the pillow to low, the air too cold. I am at once completely unconscious and aware of my surroundings. I am so tired and groggy, but, while I’m dreaming, I am well aware that I am in my room having a dream and that it would be much better to be deeper asleep. But the worst thing about this last week is it has literally felt as if I may not have enough ATP to fuel my lungs, my heart, my brain. There is a point, whether I’m right or wrong, where it feels very obviously like my mitochondria don’t work ~ it is physical, as if I can feel the millions of engines in my organs sputtering and stalling. I’m giving gas, but they just wheeze and die. It feels like, if I read, I then may not be able to speak. Or, if I expend the energy to sit up, I may not be able to breathe. And suddenly the headache and the pain and the stiffness ~ none of it is important because, even if my heart keeps beating, my brain may just flatline.
Yesterday, I did something I’ve never done: I prayed out loud for help. I prayed for this to be taken away. I prayed to go back to where I was when I thought it was bad a year ago or for help for my husband or for us to win the lotto so we could stop this speeding train towards homelessness and poverty. You think I’m being melodramatic? I’m not. I don’t even know how to muster the energy to apply for disability or talk to the bank about our mortgage. A long phone call with the health insurance company (they show termination of coverage at the beginning of January for some reason) yesterday sent me to bed for 3 hours to “recover”. Contrary to how it may seem (I am acutely aware that I rarely gloss over the mental anguish caused by this disease), I really did think I would get better. I thought I would look back on this rough patch as a period of growth ~ a rototilling of the deep grooves and scar tissue of habitual thought and thoughtless action. I would be receptive and do the work and then this coffin-like chrysalis would metamorphose into a new stress-free career and I would feel blessed for my period of attrition. I am now worried that I may not ever work again and, one day soon, our savings will simply be gone.
The good news is, when I was able to get out of bed on Sunday and go about my (abbreviated) routine, I felt a flush of triumph like never before: I came through it. I am (carefully, slowly) walking and talking. You can’t take me down for long. I will rise. I will return.
Rag and Bone Shop of the Heart 
Fingers crossed (and prayers said) for continued [small but important] steps out of the slump.
I quite often used to think that the bad times felt like I was constantly running on fumes, it’s horrid because you feel like you can’t catch a breath and get ahead of the game.
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Yes, and, when I’m that low, I also seem to completely forget that there might be a better day again. I just go black. Thank you for the crossed fingers and prayers. From all the way across the continent and ocean, it makes a difference.
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you are absolutely correct in being depleted in ATP! I know how you feel. I take ATP supplements and it’s definitely not a cure, but it pulls me out, eventually, from THAT horrible place you are in, ..It’s not going to make you do cartwheels or anything, but you could probably stand up to heat up some soup or take a shower. It’s Douglas labs brand ATP-20 It’s roughly $16-$20 depending on where you buy it. You can certainly buy it online. I buy mine for $20 at my doctor’s office. This is her main treatment for CFS, She also gives in jections of Glutathione and ATP as well. I used to do the injections once or twice a week 6 weeks at a time then she would retest my ATP.
Actually what she is testing is called Cyclic AMP. Mine is always between 18-26. That’s LOW I asled what a normla person’s would be and she said well, for example, her very own is in the 3000’s. UM NO WONDER WE HAVE NO ENERGY.. we literally have no energy, no fuel! Glutathione is also available in supplement form, but supposedly not as effective, but you could try it… Do some research and decide fo ryourself..just giving you what I know, not pushing anyting on anyone at all.. I hate when people are pushy. This is what my CFS specialist tells me to take, and I have since 2007 and it is very noticeable to me when I stop taking it, so it does something. If you can get a doc to test your cyclic AMP .. my doc says we are aiming for a minimum of 30, and if it gets to at least 30, then usually it continues to increase from there. Glutathione levels need to be over 1000 I believe, and that is what helps you immune system. ATP is what helps with some energy. None of it helps for pain.
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Ok, I didn’t know about ATP supplements. There are so many things to try! I am already on 20 pills a day! I’ve put it on my list of things to talk to my doctor about, as well as the injections. I have been following her program for 8 months and she is by no means a ME/CFS expert, so time to change things up. I am very grateful for the info on what your doctor recommends. I would go out of state to see an expert, if I could. Thanks for the comment!
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The important thing to keep in mind when you do get in a “flare” that bad is…it WILL END EVENTUALLY it always does. always. Sometimes it takes a long long time, but it will end. During those times, REST, SLEEP, REST! DO as little as possible, You may feel useless but don’t.. you are aiding your body to gain some strength back by not doing anything. The financial distress this disease puts on us is horrific! I am very sympathetic for you there.. Apply for disability but do NOT do it by yourself. Hire a lawyer that doesn’t need payment til you win…OR lots of people recommened Allsup.com they have a very high success rate, You can do everything you need to do by internet, phone call and mail. Ok ..you need to start the process. lots of people are getting approved right now on first and second tries.. so go for it! It took me 2 times to get approved.. applied in Dec 2008, denied March 2009, reapplied and was approved in Aug 2009. but..that was back then, now i’ve been hearing people are approved quicker.
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That is exactly it and what I find so hard. It doesn’t feel like it will end and I get fearful and think, “what if this is my new normal?” I’m going to tackle disability. I swear. You have given a good story for a change, so thank you.
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There needs to be a dislike button cos I really dislike what this illness does and how bad you are feeling right now. I really hope you start to pick up out of the slump really soon. I love your ‘flush of trimumph’ and know exactly what you mean. The smallest things are big victories with ME, cling to that. You can and you will rise and return. Love the positive slant despite you feeling so bad. Also I supplement ATP with D-Ribose. Only been doing it for a few months and saw energy improve immediately. My doctor recommends it and you can buy it on amazon. Just something to consider looking into when you’re feeling stronger.
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I don’t take ATP or D-ribose, I think I will add them to my arsenal on my own because they don’t seem to be on my doctor’s radar.
I’m thrilled you thought there was a positive slant to this post! I’m constantly trying not to let myself get down-trodden. We must keep fighting and believing that we will win. Thanks for the comment. 🙂
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I have been there. And it’s awful. I’m so sorry to hear you’re going through that. I know exactly what you mean about feeling like your organs won’t have the energy to keep going. Sometimes it felt like mine were taking turns working effectively, and I’d get a pile of weird symptoms from the ones that weren’t getting the energy allotment that day. So very sorry you’re there.
Please rest, rest, rest, and rest some more. Life gets SO much easier if you can figure out the level of activity that is “safe” and doesn’t lead to crashing. And even better if you can actually sick to it (or so they tell me). 😉 I say…as my spine screams at me to stop typing…
I know that at every step it feels like you couldn’t possibly give up any more than you already have…but there is always a new low, and it’s much better to go there voluntarily to help you heal than to be forced there by a body that’s giving out.
Can totally sympathize about not being able to write when you need to most. I’ve thought that often myself. …Now stop reading this and rest your poor brain! 😉
No, really. 😉
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You said “actually sick to it” Haha pun totally intended. 🙂
You are absolutely right and sane to say that it’s better to voluntarily go to the new low than be forced to ~ and I know you’re speaking from experience ~ but, it is SO HARD. I feel like, once I slip, I never regain what I had. My problem is the fear of overdoing it and permanently putting myself in a worse situation. The fear won’t leave and I wonder, if I could just shake it, would I be able to tune into my body more and know intuitively whether more or less is right for me. I’m losing all my muscles and flexibility. I need to move more, but don’t know how.
Thank you for the comment. I appreciate your tutelage and encouragement. 🙂
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I know how hard it is to cut back that much. I’m not sure that any human being can actually do it, no matter how much sense it made.
It does get easier to tell when you’re overdoing it. It just takes some time to recognize the smaller clues that mean trouble vs the ones that mean everything will probably still be okay the next day.
If I could do it over again, and give advice to myself, I would say that if a particular level of activity puts you on a downward path, it’s not worth it. And really, it doesn’t matter then how critical that particular activity seems to be, because if the ME gets worse, you won’t be able to do it anyway. And you’ll have no choice but to get around it anyway, or come to terms with the consequences of not being able to do it. And then it will be other things you’re taking for granted now that move onto the “dangerous territory” list.
I would also have urged myself to take a trial run at resting more aggressively so I could have realized sooner how much of a difference it would make. Just for a week or two, even. That means no activity beyond what you could do at your lowest, and only relaxing, pleasant activities. Nothing that leaves you feeling more drained out when you finish it, or that causes issues the next day. No pushing to do more in the times you’re feeling more energized. And every kind of activity needs to be monitored some to make sure it isn’t causing poor aftereffects – including mental ones, TV, reading, etc. Really, two weeks wouldn’t have been the end of the world, but it would have shown me sooner how much better I feel functioning at that level, and which symptoms were in response to activity vs a constant and inevitable presence. My problem was twofold – I would try to rest some of the time, but then overdo it with things and completely eliminate the progress I’d gained; and some of the things that I thought were “okay” for me because the bad effects weren’t as severe were still WAY more than I was actually capable of safely doing.
Anyway, if it makes you feel any better, I’m working with an exercise physiologist now, and her message is that avoiding a crash is always higher priority than doing the exercises. And to never do anything that feels “somewhat difficult”. Avoiding crashing is what gets you better so you don’t need to worry about things like making sure you’ve moved your arms and legs the right number of times in the day.
Again, I’m not sure how much any reasonable human could actually manage to rest as much as they probably should be…but in my experience, the closer I get, the less symptoms I have, the more my ability to do things increases permanently, and the more I feel like a normal person again.
(Sorry for the giant posts! 🙂 I just see in you so much of the thoughts and experiences I went through myself, so I think part of me wants so badly to save you having to go through what I have. Hitting bottom is awful)
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Ok, I can’t answer the way I want to right now (and I am VERY grateful, as always, for the time and energy you use to help me), but here are my immediate concerns and questions:
Concerns: for a year and a half, I have slowly and steadily decreased my activity level and have slowly but surely gotten physically worse. What if that never reverses itself? My body never feels better. I could lie down all day and I seem to feel as crappy as when I do chores around the house and interact with people. Maybe even crappier.
Questions:
If I were to try the experimental rest of which you speak, how would you suggest I do it? I can’t imagine not reading or watching ANYTHING all day. Not listening to anything? Not speaking? Not moving? In theory, how far would I take it and for how long? Maybe I could spend a few days with no computer, phone or tv, no phone calls, no leaving my bed- only talking to my husband, reading books or magazines and going to the toilet… Or is THAT too much? Then I could increase it a bit for the rest of the week so I don’t go insane: computer a bit, a shower, maybe TV, maybe stretches….? My problem is I already feel like I do SO LITTLE and it’s already taking it’s toll emotionally. I feel more lonely and depressed now than I ever have before because it is inconceivable to me that I haven’t made one iota of improvement when I stay quietly in my house everyday, stick religiously to the diet and supplements, am very careful with moving and talking to people…the next stop down the tracks is solitary confinement and coma. But I’ll try it! I’ll try anything! Just don’t know to go about it.
Don’t answer if you can’t- I’m just musing/ranting aloud. Thank you again. Hope you are making weekly progress. X
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TOTALLY understand, because I went through exactly the same concerns myself.
I can’t write right now, but will try to reply when I can. I obviously realize that I’m not all-knowing when it comes to your body either. I just have my own experience and what I’ve heard from others to draw from. But there do seem to be common trends. And as mentioned, I can see so much of what I went through in what you’re saying. It’s a crappy place to be all around, and I’m really sorry that you’re going through it.
Anyway, I’m dying to reply, but I’m going to try to take my own damned advice for once and back away from the computer. 😉
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I love you! I am there with you in the dark, with my thoughts and prayers❤
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You are! Every time… I know that. And I appreciate and love you for it. xoxo
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I’m sorry to hear you are so unwell. Your attitude is great and you’re right, you will rise and you will return. Hold on to that.
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Thanks for the support, Reva! From half way around the world. 🙂
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Thank you thank you thank you!!!! I’m sorry I haven’t been able to respond, but thank you for taking the time to comment. IT MEANS SO MUCH TO ME. These are some dark depths, I appreciate the light that you all bring. xoxoxoxo
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