The Harsh Reality of CFS

Note: On Monday I wrote three messages to my mother, in typical Aspie style – I held nothing back. I’ve clipped a bit here, but it’s mostly intact. I’m posting it here in case you want to know what it’s really like. Be forewarned: my mother spent two days in the hospital after reading this (likely TIA). My fault. No tact. I thought she understood, I thought she knew all this. Maybe it was seeing it all in one big blurb. I don’t know. I’m just very, very, sorry.

The Harsh Reality of CFS

We had a miserable evening & night here. I was SOOOO sound & light sensitive, it was terrible. Nauseated, too. Had Rhia bring me my favorite granola with cashews & dried cranberries before it got worse, so I had a full tummy. She put it in a plastic bowl so the spoon wouldn’t make scraping sounds against a ceramic bowl that would hurt my head. That is who she is & how much she cares. Drank a lot of mint tea.

Around 9 or a bit after I took a 1/2 an ambien. Slept a little, restlessly, having lots of sweats, trying to find a not-soggy part of the bed. Woke up & got up several times. At 1 or 2 am I took the other half the ambien, had woken up with this terrible bone pain in my knees and thigh bones & elsewhere. Have had that a couple times now & its why the doc checked me for the rare leukemia (test negative). Took more pain meds, every vitamin I could stand to swallow, in case the pain was from nutritional deficiencies, and ate a luna bar, which is loaded with vitamins & is a soy protein based nutrition bar. Thought maybe it was my body cannabalizing itself.

Slept restlessly the rest of the night, up & down, pain better but sweats a lot.

I see dr z in mid-december, btw, thinking thats a good thing. Something is really wrong, maybe its all stemming from the leaky gut, I don’t know.

Just to be sure you know this, but CFS does in fact kill people, its a slow process, but there can be damage to all sorts of body systems, not just a fucked up immune system, and also a much higher risk of certain cancers.

Because I’m me, with the aspergers & all, I don’t want to be beating around any bushes here. I am trying to keep fighting this, to keep going until Rhia is at least 18, and I need you to keep going & taking good care of you in case I don’t make it. Rhia and I have discussed this, that I don’t think its going to be too long now, and I can’t explain it, its just a sense of relief that the fight & struggle is almost over. I’m ready, I’m not afraid, and can feel & see God’s hand in my life.

Maybe I’ll be surprised and live to 90 like you will, but maybe not.

I had a lot of time for thinking last night while I was locked in my room, avoiding light & sound. I’m working on a necklace that will be mine, but as I was sanding amber in the dim light with my eyes closed, I was thinking about getting it so the edges are very soft & rounded, because while its going to be mine, it will be Rhia’s when I’m gone, and it was like I could see her nursing my granddaughter someday, and the baby was playing with it as she nursed, looking to all the beautiful colors hidden in amber.

I decided as I worked on this piece, trying to focus on it to exclude the pain in my head, that creation is the key – that as long as I can create things, even if it takes me months to do what someone else could do in an hour, that made it worth the pain that comes with keeping going on (that and Rhia, of course). Its so satisfying to know that even if I’m sometimes, often, useless, for anything else, I can still create something beautiful to pass down, and one day it will be Rhiannon’s, as amber & fossil ivory should and often do become family heirlooms. She can re-string it to take out anything she doesn’t like, or to add something new, and in that way, she can feel me around her even if I’m not here.

(My mother interjected that she thought I should be in the hospital.)

Nobody’s putting me in the hospital. There is no reason, nothing acutely wrong with me. I don’t have pancreatitis or something like that that can be treated by doctors in a hospital.

I’m just going down the path here, the long and winding road of chronic fatigue syndrome. I’m not on the verge of dying right now, at least I don’t think so, you can never tell about these things, I’m just slowly fading away.

And that’s okay. Really, it’s okay.

It might take years yet, who knows how long, and no one can give me a better place to be than here. Home. With my crazy pecan pie dog and pumpkin pie daughter. With my woods around me, with my stones and beads and my sanding supplies and my dremel, which is very very important right now. With all the strange things I eat, with my soft and snuggly bed.

Home. This is where I want to be. This is where I’m staying. No one is taking me away from here, there will be no hauling me off to the hospital at the end, WHENEVER that might be, whether it’s a year or two years or ten years – I’m not going down that road of being poked and prodded, stuffed full of drugs, IV’s and god knows what else. NO! Absolutely NOT!

WHENEVER I pass it will be looking out at the sky, looking at the trees, listening to the animals, at HOME. The way it ought to be!

BUT I am not dying right now, I’m not saying that – just that my sense is that there comes a point there is no going back to health, and my sense is that we are there, have been there, for some time. I’ve been sick a LONG time. I’ve been struggling a LONG time. I’ve seen every doctor, tried everything anyone coulld think of. But sometimes, nature must be left to run it’s course.

My head is hurting me & the clouds are sitting on the mountain – we are socked in. That’s about how my head feels, too – too full and pressure building in my ears. I am coming to hate migraines.

Rhia & I also talked about the diet to heal leaky gut, with all soup & broth for 2 weeks. She thinks we should try it & is more than happy to make the soup. She is the one who has to pick up the pieces when the migraines are really bad like last night, and tiptoes & silences the dogs when they bark, brings me food & tea, and listens to me moan & groan about it. I think she is as tired of them as I am.

One thing you should understand is that light & sound sensitivity and headaches “of a new and unusual severity or frequency” is one of the hallmarks for diagnosing CFS. There are people with this who get so bad that they have had to move out into the middle of nowhere, and live in their beds in a darkened room.

There are people – and I know them – who cannot speak above a whisper, because even the sound of their own voice hurts so bad they can’t stand it. People who have to write out what they want on the bad days, and live their lives stuck, in the dark & silence, for YEARS. Where even the sound of a bird singing is enough to make them throw up from the pain.

You do not know it, but you are very lucky. Because I can still get on fb, still get on the computer sometimes, still send you messages and letters and rants when sound hurts so bad that I CANNOT talk on the phone. Last night you called when it was so bad, and I had it on vibrate, and just the sound of the phone vibrating made me dry heave.

I know you get tired of typing, and I know you just want to hear my voice, but there are times when that is just not possible, when you cause me pain and increased nausea just by calling, even if I don’t answer. There are times when the phone lights up in my dark room, and just the light hurts so bad it makes me heave.

There is nothing at all unusual about this, nothing that makes this something to slap a person in the hospital for. This is just how this illness is. It’s what it does. You don’t hear about it much because doctors don’t understand it, and the people with “late stage” CFS are too sick to leave their beds, quite literally, and their families are too worn out from taking care of them.

This is just what it is.

I’ve finally come to peace with it, at least a little bit, I’ve finally come to understand that this is how its going to be, locked in the living death of CFS. That’s what we call it – living death. And the end, when it finally comes, is welcome. Is a relief. Because you cannot live this way without going nuts eventually. That is why the level of suicide is so very high – you cannot imagine how horrible it is to be in such pain, such isolation, cut off from your hopes & dreams.

I coughed – swallowed my tea wrong and a very large puppy came to see if I was ok. To look into my soul until I told him I was alright. Life never ends. The spark, spirit, and soul, that we are never ends. He came back to us so soon so we would understand that.

I have to go now. My head hurts & I need to rest. I’m sorry I’ve upset you, but you know how I am. Blunt & to the point. No hidden truths. No secrets. No little white lies.

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4 thoughts on “The Harsh Reality of CFS

  1. Ash; I am crying, sobbing; tears for you, for your mom (I pray that she is better), and for Rhia, and I am sobbing, because, once again, even though I am articulate to an obnoxious degree, you described -no, you spoke my words, about my life -everything-I know again why we call each other Sister, and “Spirit Sister”-Please dear sister, remember that no matter what I am your nurse-and I will be there to help you stay in your home-no bullsh&t-Your giving, caring, and even loving me-you have kept me going, even though you may not know it-you AND Rhia. I hope that you are better, and betterer. I also admire your bravery, even Aspie-bluntness-bravery-I saw so many patients pass in a way that the did not want to-even had a horror of-instead of “hurting” someone’s feelings-even at that late stage.
    Oceans of Love and Starry Hugs

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    • Oh, sweetheart, I’m so sorry I made you cry. I only can hope they were tears of release, the kind that bring healing through the pain. I feel for you every day, in your situation, so sick, and with no one to tenderly care for you on the bad days. We are so alike, our lives have run so parallel. I think we are meant to be here for each other through it all, support each other, empathize with each other as only one who has gone through something or is going through something can do. Goddess brought us together for this – we are a blessing to each other. Soul family, spirit family. No matter what comes.
      My mom is home now, and doing well, no after effects other than very sleep deprived from her ordeal. I am so sorry I hurt her so much. And so grateful she is okay. The irony was not lost on me that I had written her about how no one would be taking me to the hospital, and within a couple hours she landed there. So, so thankful she is okay.
      Many gentle, heartfelt hugs, vast oceans of love, and many starry hugs, dear one.

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  2. Dearest Ash,

    I’m very sorry to hear you’ve felt so bad lately, esp., with the headaches and sound sensitivity. Your post touches me in many ways. I understand and relate with your experience(s) and, I can understand how your mom’s heart must hurt and worry. When my son told me this past summer that he had given up, well, I reacted in ways that sure caused a turn of events! He landed in a hospital and it was hard to get him out. It also put his physical health in danger. Now, mine is a very different situation than yours, but the part I can understand about your mom, is that she wishes you could feel better and wants you around a long, long time, you know.

    Perhaps your mother can feel some better knowing that you offer a gift to those of us that suffer and have the same wishes as you, which is to stay home! Totally am there with you on that one! You understand about the living dead experience, and you know what we all think about, that some of us dare to speak or write.

    It’s too bad, and an injustice really, that in this great country of ours, we do not have the greatest rehabilitation centers on the planet! We need practical ways of healing in community, coping with the hardest of times and more in-home care (& the latter needs to be available without making us wards of the state). And, I do believe a person deserves the right to choose when she or he has had enough of a chronic illness. I’ve always maintained that we treat our dogs better this way, but then, we have human mothers, and we love them. I didn’t think much about this until I got CFS. The fatigue alone is so debilitating to the mind and body that I think everyone who suffers with this awful, awful thing, must think about the end. (How long will I suffer? How long!?) After years and years, it does feel like there is no returning to good health.

    If you went to the hospital, there isn’t much they can do for the CFS, unless there is an acute condition, so they would likely send you to the psychiatric unit for thinking the way you are and there, you would probably not go outside or even have a window for fresh air, unless you go to a private resort type place, but even there, you wouldn’t have your home, your land, your place of peace where you sand stones and of course, as important, your dogs. Nor would you have someone who understands what you have gone through and are continuing to live with. We need community organizations designed by people with illnesses like CFS, who can give and receive. A Co-op bartering community health service.

    Bless your soul, and your heart. I send my heart felt wishes to you and your family, and pray that peace and comfort somehow replace the worry and grief that is felt. And of course, I pray and ask that you are blessed with healing, even if that is simply a relief from the migraines.

    With gratitude, your friend,
    Michelle xoxoxo (doggie kisses and big hugs to you).

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    • Hello dear Michelle, and thank you so much for your wonderful comments – they mean a lot to me, really. It’s really an open secret, isn’t it, that patients in the CFS/ME community all have these thoughts & feelings about the misery of this living death, the feelings of burdening our loved ones (when we’re lucky & they support & understand us), the feelings of being just so sick & tired of being sick & tired. When it goes on for so many years, this slow spiraling free fall, when the pain, even if well-treated, is so great, how could we NOT have days when we just are so exhausted in that way the healthy cannot understand, that all we want is to lay down and not wake up?
      We speak about it in whispers & veiled comments, and ask, “what killed Amberlin?” while wondering if she finally reached the point of too much, too long (and I never did hear, in case you know of her & her passing in October). We talk about it privately, as if it’s something to be ashamed of, that a seriously ill person lets go of life & moves on. But it shouldn’t be – maybe if we actually talked about it, publicly, it would help.
      I have several friends in the patient community who have “the agreement” with their closest friends or a family member, that if they decide to end their suffering themselves, they will tell them, before, so they can properly say goodbye, and who are stockpiling meds for just such an occasion. I’ve heard of several patients who went to Switzerland, I think, where they have the clinics where you can go to have assisted suicide. There was the mother of a patient in the UK who was charged with murder when she found her daughter had attempted ending it but wasn’t quite there, and she begged her mother for release (I think they acquited the mother after two trials).

      It is, as you say – we treat our dogs with more kindness when it comes to illness & time to let go. People who don’t have to suffer through this illness for decades make decisions to lock up anyone who just cannot take it anymore.

      I don’t think it will come to that for me, as I think it will be a natural consequence of the uncontrollable weight loss or else there’s cancer, too, which is often the case in CFS/ME & I will refuse chemo. I’m content to let nature take its course. I’m working on a post about acceptance, and clarity, and how I’ve finally gotten my mind wrapped around the concept, that it doesn’t mean giving up, but rather accepting that this is what it is. And I haven’t given up as in hopeless, I don’t feel hopeless at all, I feel… I almost want to say serene but that’s not quite it.

      I followed a link from your blog the other day, which led me to another blog where the author was dealing with psychiatric issues as well as migraines, and she was on the GAPS diet, which is for actually healing leaky gut syndrome. I’m giving that a trial run, in day 5 now. I’ll let you know how that goes as it might help both you & your son.

      Many warm and gentle hugs to you, my friend, and plenty of Kodi-kisses, too!
      Ash

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