“How Do You Do It?”

“How do you do it?” she asked. “Just how do you manage to keep it together in spite of how miserably sick you often are? It is just so hard to keep doing this, you know?”

It is a question I get asked often, and there are a number of answers.

First, a rundown of what we’re dealing with.
The common perception of someone with one of the Neuro-Immune Diseases (NID) of Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), chronic Lyme disease or other tick-borne disease (TBD), is that it can’t really be as bad as we say it is, we’re lazy, or, we’re making it all up. Or, that we’re just depressed and “need to get out more.”

Nothing could be further from the truth.

Every victim of these very real, physically devastating illnesses I know actually is quite skilled in hiding their true level of discomfort and pain from their family and friends, struggling to hold on to some semblance of normalcy in their life until it simply becomes physically impossible.

Patients with mild ME/CFS, NID, etc, can sometimes work part-time, look after their families, and have a social life.

But for severely ill patients, that is not the case. Not at all. They ever so slowly get worse, and enter the phase we call “the living death.”

A really brief “refresher course” for those not familiar with our illnesses:

  • Many cannot leave their house except for medical appointments.
  • Most spend almost all day “vertically challenged” – either in bed, on the couch, or in a recliner, too utterly exhausted to move. There have been times I’m so exhausted, I’m acutely aware of the effort it takes just to breathe.
  • Most can’t cook for themselves, and some need assistance just to go to the bathroom.
  • Pain is usually a constant, even with the best of doctors – something many are lacking.
  • Many are severely sensitive to sound & light. They may eventually wind up living (if you can call it that) from their darkened bedroom, the shades drawn, speaking and being spoken to softly.
  • Cognitive problems get worse, and short term memory problems make things very difficult. Concentration, comprehension, “word-finding,” and spelling all become issues, and the more tired you are, the more pronounced the cognitive problems.
  • Me & Cherokee, about 1988


    “The Before Times”

    Virtually every patient I know was very active in “The Before Times, ” – what we call the years before these horrible illnesses blindsided us.

    Many of us were “outdoorsy” types – campers, hikers, runners, gardeners, and a disproportionate number of us were horseback riders (perhaps – or perhaps not – because a strain of Bartonella has been found to infect horseflies and be transmissible to humans).

    We were not lazy folks, generally speaking, and we’d all love to be strong and healthy enough to take up our previous pastimes. What I wouldn’t give to be able to ride again!

    But you know, we’d really all just be happy if we could function well enough to take care of ourselves, and not be a burden on the family or friends we’ve come to rely on for everyday care.

    I’m intensely grateful for the loving care my youngest daughter, Rhiannon, gives me every day, and her partner, Ben’s care, too, as well as the support I receive from the rest of my family.

    Some of us don’t have anyone, and suffer alone, in a sheer struggle for survival. My heart goes out to them, and if you are one, I urge you to get active online in some of the forums and facebook groups, and build yourself a virtual support network.

    Grieving My Losses

    I think an important first step in dealing with these illnesses is recognizing all that they have taken from you, and grieving your losses. And then, grieving for them again, because I don’t think we ever really finish the grieving process – it’s a spiral, not a circle.

    All those things I love to do, but can’t anymore – the horseback riding, the gardening, etc – periodically come up to be acknowledged again, and I try to remember that I led a life full of unique and rare experiences before I became ill, and to be grateful for what I had, rather than regret what is lost.

    However, there are always new things to grieve, as I get sicker.

    Many of us have been avid readers, but the ability to lose ourselves in a good novel is often one of the first things to go. When you can’t remember what you read the day before, or keep track of charechters, it becomes impossible… and yet another thing lost to these illnesses.

    Recently, my migraines and light and sound sensitivity have gotten so severe that I’ve lost the ability to watch TV, even with the brightness, contrast and sound down. I’d love to go to a movie, but haven’t in a long time, and doubt I could handle one.

    So, I acknowledge the losses, but I then let them go, and embrace what I can still do.

    Blogging

    Blogging has turned out to be far, far more than I thought it would. I started blogging just to keep my family updated on what crazy health stuff was going on, but then I found my voice… and I was found by fellow patients, some of whom have become dear friends.

    Many others have emailed or messaged me telling me how a blog post has really touched them, sometimes bringing them to tears (usually the good kind), often expressing that if they’d had the ability, they could have written exactly what I had. Sometimes people have questions, and I do my best to answer them.

    Slowly, the realization has come to me that maybe this blog was the point all along, maybe it’s my “work” here on Mother Earth. I always wanted to write, but never had the time. Now, I do, and plenty of subject matter.

    There are a lot of really sick people out there, suffering from these very misunderstood illnesses, and a lot of very odd “coincidences” and connections have been made to bring some of them into my life.

    I’ve seen that my writing is making a difference, which is huge. I may spend 90% of my day in bed, but I’m still having an impact in the world, and for that, I am so very grateful.

    Nature

    Mother Nature is strong medicine, and while I used to enjoy Her during epic horsetrekking trips or camping, now my options are more limited.

    But, that doesn’t mean they aren’t there! I’m blessed to live in the mountains I’ve loved since I was a child, with amazing views right from my bed. A screened in porch with a hammock-chair is well used, many times a day for very short periods of time (that whole “vertically challenged” thing).

    From there, I can watch gorgeous sunsets, the deer amble through the “yard,” fawns in tow, observe the nesting birds, flight of the hawks, occasionally spy the fox, and watch as the seasons change. A few steps away is the container garden on our deck, with fragrant herbs and flowers.

    Friday, I watched the Blue Moon rise above The Mountain, alone in the moonlit forest, and it was wonderful, if only for a little while.

    Beauty, natural beauty, is integral to my staying sane.

    Facebook

    I have many friends on Facebook, but most importantly, a strong, loving and supportive Circle of Sisters, most of whom are also ill. We catch each other when we stumble, cheer each other on, and commiserate over the pain. It is somewhat ironic that after being pretty much a loner all my life, with few friends, I now have more friends who I deeply love than ever before.

    I am gratefulfor each and every one, and all the Love they bring into my heart and my life.

    Creativity

    It may take me a month to do something a healthy person could do in a couple hours, but it doesn’t matter. What matters is that I work at it (usually “it” is crafting a bead from fossil ivory) as I’m able, 10 minutes here and there, and when I’m done, I’ve created something beautiful.

    Gratitude

    (Bet ya saw this one coming.)
    Maintaining an attitude of gratefulness for all that I do have – a loving family; wonderful, supportive friends; a home I love in the mountains I adore; good medical care; access to the internet with all its fascinations and distractions, etc – helps tremendously. When things get rough – and they’ve been very rough lately – I try to remind myself of all the good things I have.

    Sometimes…

    …none of that is enough. Sometimes, I wilt under relentless migraines that go on for weeks at a time, or get so frustrated at my inability to accomplish even small goals that I just want to scream.

    I’m not the perfect pillar of strength that some people seem to think I am. And like most of my more seriously ill friends, I’ve watched as I’ve become more and more of a burden on the people who love me.

    Those are the days I either contact one of my spirit sisters for support, vent to my mom, relentlessly sand a bead to distract my aching brain, whine a lot, reach for a klonopin…

    …or, all of the above.

    Getting By

    As one friend and I say, those are the days we get by, one breath… one moment… one hour…at a time.

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    13 thoughts on ““How Do You Do It?”

    1. From my horizontal spot to yours: You read my mind, Ash. I actually have a gratitude post sitting in my drafts folder right now. And yes, sometimes all of it is just too much. That’s been happening to me too, lately. September is a transition time and it makes me restless, but there’s nowhere I can go. It’s hard to deal with.

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    2. You wrote what was in my heart, Ash. Right down to the klonopin and the soul sisters. I feel the same exact way, I long for energy, the kind I used to have and can barely remember what It feels like anymore. Just imagine waking up in the morning and NOT having to assess how you are feeling like I was able to do before these nasty illnesses, what I would give to have that back!!! I feel like an old fashion record being played on s-l-o-w…..I have come to accept it but not with happiness. I am glad to be part of one of your soul sisters and for you to be part of mine. Gentle hugs all around, Laurie and Lexi xoxo

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      • Yes, Laurie, and I feel old before my time, like I’m 100 and just creeping along. But I’m blessed to have you in my Circle of Sisters, so thankful for that which brought us together and for your support. Without this illness, we would have never known each other, and the same holds true for Michelle, and others I hold so dear in my heart, and am so full of Love for.
        So there have been very unexpected, but very welcome, blessings, too!
        *gentlest hugs*
        And much Love ~
        Ash

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    3. This is a wonderful post Ash, and beautiful too. I still cannot comment much, but I wanted to tell you that I really enjoyed reading this. Thank you.

      Big Hugs and Lots of Love,
      Michelle.

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      • Thanks, Michelle!
        I need to scan that picture again and have a larger version of it. I had just finished taking Cherokee for a bareback dead-out run across the pasture, and had felt so in tune with her, our bodies moving as one. She was a Standardbred mare, deemed too slow for the track, but she was plenty fast for me, especially bareback! That was one of the happiest moments of my life 🙂

        *hugs*
        Ash

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        • Hello my friend. I was thinking of you today, and wondering if you are having a headache. I hope not, but if you are, then I’m saying a prayer that it will pass very soon.

          I do so love the photo. I bet if we’d met ‘before’ that we would have been great and adventuresome Buddies. Now, after the illnesses, I’m so glad to have you as a Spirit Sister!

          I also had another reason for stopping by. You know, I sure do well at neglecting or rather, turning my head from my pain and fatigue. I just say oh well, that’s fibromyalgia, when honestly I am wondering if I was wrongly diagnosed. I had to go to the doc after talking to you. I had no clue I was so sick Ash. Remember I said my lungs hurt? They got worse and so did I. I have pneumonia and am sick. I can’t believe I walked around in that much pain. Then on my records at the doc, he put on there “Chronic Fatigue Fibromyalgia Syndrome.” He says he has never heard of ME. He is the one who diagnosed me in the first place with Chronic Fatigue as a result of RMSF! Sigh…

          It is so hard to do it! So hard to be sick and so sick that you don’t even know you have ‘walking’ pneumonia.

          Well, now, I forgot my original reason for this visit. Wait! I just wanted to say how lovely the photo is and you should surely scan it. Is that your hair so long? So pretty.

          I hope your day is okay my friend. This is a very good blog post too. Thank you for being a strong voice for us Ash. I am truly grateful to know you.

          Love, Michelle.

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          • Ah, sweet Michelle… I hope you are starting to recover from the pneumonia by now, and so sorry I hadn’t read this before finally seeing your post on facebook about the pneumonia. I’m just so sorry you are so sick, struggling with so much… know that you are never out of my heart and rarely far from my thoughts. I hope that you are starting to heal. Remember than CFS is an immune deficiency condition, as well as auto-immune, and it will make it harder for you to heal.

            I’m so glad you like the pic of me & Cherokee. Yes, that’s my hair – it was butt length! It was long most of my adult life, but it’s so hard and exhausting to shower anymore that it’s much shorter these days.

            Sending you much Love and Healing prayers…
            Ash

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    4. Thanks Ash. I’m weak and no appetite but just ate some chicken. I’m also quite irritable. (+10) Unfortunately, my temper got the best of me today regarding an event that upon reflection, was not as serious as I made it out to be. My son and i had a huge misunderstanding because of it and I ran my mouth to his boss and this resulted in him not having his job anymore. Sigh… I just keep messing up lately. He says he is sad but isn’t mad at me. Amazing! He has more patience than anyone I know. I’m so sorry to him, and I told him that. He said oh well, what is done is done.

      I hope to be feeling better soon. I am pretty much a wimp when it comes to being so sick I can’t do anything. I can’t walk Ruthie and I get so upset. I get mad at the world, you know.

      I wish I could get acupuncture. I hope I can get the energy to get a treatment.

      Thanks for your sweet and encouraging (and understanding!) reply.

      xoxoxo
      Love, Michelle.

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      • I think everyone gets extra grumpy when they’re sick on top of sick – I know I sure do! It’s kind of a feeling of unfairness – “isn’t it enough that I’m already sick 24/7, did I *really* have to have some other illness added to my load?!?” Exasperating! It took me a l-o-n-g time to get over the bronchitis last Fall. I remember I was coughing up chunks of green mucus for 3 weeks, and it took 2 antibiotics to get it killed off. I was so very weak, and so very lucky I had Rhiannon here to care for me! I wish you had someone to make you hot tea with lemon juice, and chicken soup. Just keep drinking as much liquids, preferably hot ones, as you can hold – it helps thin the mucus so you can get it outta there.

        I’m sorry about what happened with your son’s boss. It’s kinda funny, though, because when we talked, you said you were thinking his working there wasn’t worth how hard it was to get him back & forth. So maybe it’s for the best. I’m glad he is patient with you and isn’t angry.

        Michelle, your comment about me weaving in the Before Times was linked to the picture of my brother & I after we’d been skiing, not me at the loom, so I have pulled it off. I don’t have the loom anymore, but used to have several. I could shear a sheep, spin the wool, and weave, knit or crochet the yarn into hats, scarves, shawls, pillows, etc. It’s really not that hard to learn, and is very satisfying. I love the texture of home spun yarns, thick & chunky… those were the days. I even had a half-Angora rabbit who was a housetrained house bunny!

        What stories we could swap!
        Just keep taking the best care of yourself as you can, please, sweetheart – I worry about you.
        Holding you close in my Heart,
        Ash

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      • OUR poor, fragile Michelle, I am so worried about you. I hope you are feeling better by now. Please let me know, I know you are sad, I feel that. Don’t be so hard on yourself, we are all so hard on ourselves but we have to deal with so much. Your son LOVES you, like no one else and all parents make mistakes, believe me. You did what you did out of love. Was it the right thing? Maybe not but it is done and if your son forgives you than you need to forgive yourself. Gentle hugs and blessings to you, I will keep you in my thoughts and heart. Laurie

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    5. Thanks for your words and kindness, again, Ash. I figured the photo of you and the loom was from a long time ago, but I sure love it. You look happy doing it too. I’ve always thought having one of those (and of course knowing how to use it) would be fun and most practical. My mother was a weaver in a mill, but those machines were HUGE, esp., when I was little. I went inside of the mills to see her sometimes and boy they seemed to go on forever. That mill closed, of course, as all the ones in NC and so many other places did. Was sad to see it go, but I get off subject.

      Sigh… my fingers hurt, which brings to another subject. Mucus. I haven’t had much. Some, and it did feel better after expelling, but mostly it is pain in my chest and upper middle back. I think a massage would feel very good and may be helpful. The doc said it is in the right side but I haven’t been in this much all over pain in a long time. If ever, really. Not this kind of soreness. I feel like a mule kicked me.

      Well, I can’t write more with my fingers, so I’ll say goodnight, and thank you my wise friend for your amazing understanding and compassion. You are very special and I’m lucky to call you my friend.

      Big hugs and Lots of Love,
      Michelle.

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