It’s funny, what I forget, even now, after so long being sick. Sometimes, in my mind, I am still strong & healthy, as if time simply stopped passing when I became ill. Sometimes, it really feels that way, as if time did stop, and there is only The Before Times and a giant blur that came after.
But it’s been 15 years this month.
I had relapsing and remitting symptoms for a couple of years, and then in Dec, 1998, ME/CFS & FMS (and chronic Lyme) came to stay. I was diagnosed in 1999.
I just now, today, realized it was now actually the month of December, and the year is 2013, and that means it has been 15 years.
Time passes very differently for those of us with ME/CFS. I often am surprised at what month it is, or how long it’s been since something has happened. Sometimes I’m off by years when asked, “How long since…?”
One of the curses and also dubious blessings of this illness is memory loss. I remember things that happened before I became ill far, far, clearer than things that came after. Those 15 years are a fog, a ghostly mist through which I catch glimpses of events.
Sometimes, something or someone will trigger a memory, and something totally forgotten comes back. Sometimes, no matter how hard someone tries to get me to remember something, even some meaningful and important event, no matter how desperately I grasp for it, there is just nothing there. A ghostly mist where the memory should be. A blank slate.
But the not-remembering, the fog, and the complete lack of a sense of the passage of time, those things can be a blessing, too. If I had to really remember all the pain, misery, and suffering, of those 15 years, the frustrations, the losses… I’m not sure I could handle that. It is better that it is a blur.
Sometimes, because it seems like the last 15 years really didn’t happen, and I’m still that strong & healthy woman I was at 35, I forget, and do stupid things. Things my now-fragile body can’t handle.
Today, we are in something of a crisis as we are preparing for a severe ice storm, and I am totally stressed out. This stress is a huge problem.
My body’s been dumping adrenaline, making me think I am stronger and can do more than I am or should. It’s had this adrenaline dumping issue for months now and we haven’t been able to track down the cause.
Suffice it to say, whenever the slightest bit of stress happens, my body dumps adrenaline and prepares for “fight or flight.” This has led to a lot of pacing around the house like a caged tiger, sleepless nights, angry and irrational outbursts, a “manic & frantic” mental state, and is, in general, driving me and my very patient caregivers absolutely crazy.
The last 10 days have been incredibly stressful, with a severe ice storm last Tuesday & Wednesday leaving damage behind that I had to deal with, and now a second, probably even more severe, ice storm looming on Sunday.
I have pushed way far through the “energy envelope” we with ME/CFS are supposed to stay within, for day after day, goaded on by a flood of adrenaline.
And I’ve done a lot of really stupid things: walking around in the icy woods assessing damage, flagging down electric company workers…
I’ve been home alone for a week, as Rhiannon’s couple days’ visiting with Ben’s family turned into a week when she caught a terrible cold that I really don’t need to catch. So, I’ve been dealing with a lot of crap on my own that I normally wouldn’t – not just daily living, but getting power lines fixed, both at my house and a neighbor’s retreat cabin, being without cable for days and getting that fixed, etc.
Today’s really stupid thing?
When the electricians who are installing inside wiring for our emergency generator arrived, Kodi, our 125# Tibetan Mastiff/Rottweiler, went ballistic. He is head of security here, after all, and there were 3 people on the porch. His job is to protect me, and he takes that very seriously.
The flood of adrenaline hit. I had to get him in the bathroom so I could insure their safety. I didn’t even think about it. I reached for his collar and he yanked himself away, rearing up like a wild horse. I lassoed him with a leash, and oh, he fought, just like the horses I used to have, before finally giving in.
Kodi understands something I still don’t, after 15 years sick, and 3 or so at this precariously low weight: He’s an incredibly powerfully built, 125 pounds of solid muscle, linebacker of a canine killing machine, and I am 107 pounds of skin, sinew and bone. I am not that physically strong woman anymore, who could wrangle a horse.
He is a dominant-aggressive dog by nature, and it took a long time and a lot of hard work to get him to submit to me as his pack leader. He still sometimes puts up a fight about that, especially when I’m in the frantic-manic mind-state that adrenaline puts me in, rather than the calm-assertive state I should be in.
It wasn’t until my adrenaline level dropped that I even realized my hand was hurting and damp. Leash burn, so bad it had blistered open and was oozing pus. And then pain in my fingers, my wrist, my back…
“What the hell was I thinking?” I asked myself, as I inspected my hand, noting yet again the hollows where muscles used to be. I wasn’t, I concluded.
Adrenaline fueled, my mind told me to take care of the problem.
Forgetting I wasn’t still that tough & strong woman who not only wrangled horses but also lived with wolves, I did.
Now I will pay the price. Hopefully, this time the lesson Kodi has taught me will stick, and I will approach him differently.
15 years I’ve been sick, and yet, still, there are times I don’t remember that.
And I don’t really know if that’s a good thing, or a bad thing.
But if ever I forget, and truly only see myself as this frail shell of the woman I once was, I think I would be done for. THAT woman has to live on in my mind, the ultimate goal, in order to keep going, keep looking for ways to get better. I will never be quite HER again… I will be older, wiser, and emotionally and mentally a hell of a lot tougher than I ever was. But SHE has to remain the goal, unforgotten.
I think that’s worth a little leash burn and sore muscles.
Wolfdreams.... 
beautiful blog Ash. You captured the sense of it so well. Some of my personal sense of ME is that it is similar to being thrown from healthy mid-life to failing mid-90s. As my mother ages, she often comes to me for advice on coping with elements of fading faculties…. Just the other day she was saying that she and her mid-80s friends have a sense a bit similar to this, that something happens, they realize they are frail, something isn’t working, is failing, is gone….. and then they describe it to my mother in wonder or indignantly, saying, how can this happen, that only happens to old people. And are startled when my mother says, but you are old! They’ve forgotten. They think of themselves as younger, stronger and healthier.
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My mother, who is 86, has said the same thing, and she was very touched by your comment, Leela. She also gets very frustrated when people act like she is not there, or has no mind left, when she is incredibly sharp still. They only see “old” and just “ignore” instead of respect the wisdom our elders have, as we did in the old days.
I’m glad you liked the blog ~ thank you for your kindness, friendship, and support. *hugs*
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Dear Ash, Lexi is definitely a cousin of Kodi’s, except she’s a mutt but they do look the same. She’s only 45 pounds but she is killer strong, I can’t even walk her anymore she pulls so much. Spiritual sisters have spiritual dogs, I like that. You, dear, are one of the strongest people I know and of course I am sorry for all that you have to go through. I will send you prayers for Sunday night’s storm, you were the first person I thought of when I heard about it. Remember, I love you and please keep eating (although I was shocked to read that we really are only about 5 pounds apart now.) Keep yourself warm and don’t do stupid things silly!!! I know you are stubborn, I am too but please think first and do later. Talk soon. Miss you, Sending you love and hugs, Laurie
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Oh, this killed me. I feel so much the same way, but I’ve only been sick for two years. I can only imagine your harrowing journey. Time, for me, stood still, also. I believe that soon this long weekend will end and I’ll go back to work. It’s like we’re waiting out the ice storm and, when it clears, we’ll go back to schedules and planning for the future and the hustle and bustle of every day life.
I, too, have a very large protective dog- a 110lb Rhodesian Ridgeback (I’m 100lb) who would protect me to the death ~his barns split my head open ~but he has been devastated by my illness. He’s fearful of my gasps, my tears, my “weak voice “, which is the first indicator of a crash.
I am so sorry you are dealing with this constant adrenalin rush~ i know how exhausting it is~ but thank you for being a warrior the last 15years.
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I remember my 1st anniversary, and then the 5th hit me very hard. I never dreamed it would go on so long. But my case is very complicated, with tick borne disease, a lot of viral stuff, and more that’s crept in thru the years. I want you to have hope – treatments are better now than they were 15 years ago, and most importantly, you are in that magical window of opportunity, the first few years when some people are able to go into remission. So take very, very, good care of yourself, and don’t push yourself outside your “energy envelope” – give your system every opportunity to do a “reset.” I will be hoping for you to come roaring out of this, a stronger person for the trials & tribulations you have been thru!
Your dog reminds me of my German Shepherd, Shunka, who passed a few years ago. He taught himself to be a seizure alert dog when I had a cardiac rhythm pseudo-seizure and almost died. He got me help, and stayed with me, biting my arms, shaking me, trying to get me to snap out of it. Drs said that may have saved my life. I don’t remember a thing, but my young daughter was here. After that, he changed, and was in my face checking me out if I so much as cleared my throat or coughed! He wanted to be sure I was okay. I’ve written about him a lot here… he was one of a kind. ❤
Wishing you well, hope, and peace of heart,
Ash
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Hi sister .read you mail.You will be in my prayers.i wish that u were a lot closer so i could help you.glad to see that you are installing a back up generator.We have one that is on standby twenty four seven.They are nice but man they eat propane ,even if they self test once a week.They filled it in the summer to the tune of $200. and the came and topped it off yesterday $140.But they are a blessing when you live in the woods like we do.May GOD BLESS you as HE does us.Wish you were closer i would treat you to some fresh venison loin:)
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Dear Ash,
Beautiful! Thank you, Ash. Every word could have come straight from me, and again, I am reminded of the bond of Sisterhood we have. It’s a special Sisterhood, I feel, as we carry an awareness and the lived experience of such a vast amount of suffering, and especially that the suffering is so entirely consuming in it’s chronicity.
To me, your words come as a gift. My heart is truly warmed. During this time of moving, pain is high and I’m pushing my body. Yesterday, I was lying on the floor beside Ruthie, which is where I’m currently temporarily sleeping, since having moved my bed to a place I can’t yet sleep (not such a smart move, but it was not my idea, just for the record 😉 ). I was holding my arm up and when I looked and saw the image of my grandmother’s when she was in her nineties.
Again, when I took Aqua-therapy a few years ago, my mates were older than me, and many were in their eighties. I was stunned when they quickly passed me by in the lanes. We walked across the warm pool, back and forth, which is wonderful, but I was always left behind! Some felt badly, and would slow down, but the therapist talked to us and we understood that we each had a pace to keep.
I’ll be thinking of you, my friend. Be careful when you go out into the woods. Try to go very slowly, and watch your steps so you don’t fall.
Kodi!!! What a great boy! Oh how I wish he could meet Ruthie. They would fall in love though, right away, so I know they would long for one another after meeting. I used to have a special treat awaiting Tiny boy that I used in certain situations. It had to be pretty special to get his attention though.
I’m glad I saw your blog post in my mail. I wanted to respond more, but my brain is too tired. The birds are perching now, and so again, I am off to first, lie down again for at least ten minutes, and then get up to work.
With all my Love, Prayers, and Healing Wishes,
Your Sister, Michelle.
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Hello, sweet sister! I’m sorry it’s taken me so long to respond. It turns out I didn’t keep the kids away long enough, although there was no other option than to bring them back, and they both relapsed their really virulent respiratory virus – and I caught it. Rhiannon needed 2 different antibiotics to clear up the sinus infection it left her with. I wound up with a combo sinus/ear infection, and the antibiotics and a Medrol (prednisone) pack I was taking for a huge flare in reactive inflammatory arthritis started a snowball effect of a severe systemic candida infection – thrush, gut, etc. I’ve been really struggling to get it all under control.
But I know exactly what you mean about looking at your arms and seeing those of someone much, much, older… with muscles wasted away, skin hangs loosely, finely wrinkled like in the elderly. I watch as the crevices between tendons on my hands and arms become more pronounced, and I’ve lost all the subcutaneous fat on my arms, so my veins are sharply outlined. The lab techs love me – no digging around for a nice juicy vein anymore…
It does something to a person, or at least, to me, to look in the mirror, naked, or on the rare occassions I feel up to bathing, to see such changes in my body… to see my breastbone and collarbones and ribs protruding from sunken flesh… it makes me angry, and sad, despondent, and sometimes hopeless… but at other times, defiant. I want back what has been taken from me. And I’m trying so hard, researching herbs & supplements, listening so carefully to my body. Sometimes I think I’m getting somewhere, and then something always comes along and smacks me down. But I won’t give up, and I won’t give in. There has to be a way.
I think of you, often, and Rhia has told me what is going on there, and you are an inspiration to keep going. You have so much on your slender shoulders, and yet, you, too, keep going on, keep doing your best. We sisters, all of us, we have to be inspirations for each other, for when the going gets tough. Today I am in hormonal migraine hell yet again – wish I would be done with this! – and feeling the pms blues. So today you and Laurie will be the stronger legs of our 3 legged stool that I am leaning on, no matter how bad you feel – just knowing you are there is all the support I need. We need a slumber party!
Please try hard not to over-do it, altho’ I’m acutely aware there are times when we have no choice. Sending great waves of Love, healing, and Peace,
Ash
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Dear Ash, Dear Ruthie,
I am HERE and I will be strong for all of us. Lean on me. I promise and you know that when I am in bad shape I come to both of you first (if you haven’t come to me already!!!)
We’re expecting a foot of snow tonight and of course weather changes for Fibro gives us the automatic flare from the weather change. I have been fighting headaches but none as bad as you guys, I am grateful for that and hope yours will not be as bad as usual. (Hope, Pray, Wish)
Lexi has hunkered down beside me in bed, the kids are both home and Dan is home too. Sometimes unemployment comes with a silver lining. I’ve been helping friends and my mom being advocates for their health. Being busy doing good which always feels right to me.
I think my mom is relieved to be able to put my name down and give me permission to talk to her doctors, I ask more questions. (IF it was for myself, believe me, I would ask someone else.)
Wishing you both (and families) a peaceful, loving night. If you feel hugs around you or a warm feeling, you will know it will be from your sister hugging you through cyberspace.xoxoxoxo Laurie
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Sending Love to you too, Sister Laurie, and Lexi!!! Big hugs! See you in cyber space as soon as I get connected. I am leaving this place, but my birds are gone. I hope they found a nice new home.
Love, Michelle and Ruthie.
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Thank you for your kind, and most loving words and friendship.
I have over done things, by a long shot, and am paying a large price.
I’m on a hard wood floor writing, so I gotta go. I keep having to come back,. for more stuff, and when I get to my new place, if it is passes inspection today (we had to get a motel room last night), then I can finally move in. Took me forever to get the phone and internet moved, without paying so much.
Oh, the pain and sickness!!!!
I will send prayers your way Ash, and Laurie too.
I love you, and Rhia, and your gang.
Big hugs and love from Michelle and Ruthie. xoxoxoxo!!!
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