I Fell Asleep on the Toilet

… but at least I didn’t fall in. Or fall over.

That shows you just how tired I am. Sometime in the middle of the night last night, I woke up, had to pee, went to the bathroom… and I don’t know how long I sat there, but I woke up with a start with my head leaning against the wall, sliding slowly downward… jerk, awake, wha– – ohhh, yes, I’m peeing. Wait, no, I’m done peeing. Oh, okay. I’m on the toilet. Nice.

That’s when you know you’re really tired, when you can’t even make it through peeing without falling asleep. I nodded off and nearly fell asleep watching a movie tonight and I fell asleep in the car, or at least dozed, while trying to get my daughter’s car that had broken down and been abandoned there for a week.

PULSE OX and HEART RATE

I started taking some T3 Cytomel at the same time I started taking some Florinef. One, the T3, is for the autoimmune thyroiditis, called Hashimoto’s, and the other, the Florinef, is for the mineralcorticoids for the Addison’s disease. I started both of them at the same time, and started working up on them like I’m supposed to do, and within about a week, I was having some major symptoms… my resting heart rate is now about 90-100, and my heart rate when standing goes to about 120. My heart rate when moving around goes to about 140-150. It doesn’t stay up that way long, but it’s enough to feel it and feel it badly.

My sats though do the opposite: The higher my heart rate, the lower my pulse ox. At the worst, I’ve been down in the 78 range (normal people should always be at 98-100%), and when moving around or standing, I’m averaging about 82%. Sitting still, doing nothing, averages about 91% and sleeping at night averages about 90%, unless I’m moving, then it’s 88-90%. This isn’t horrible. Many people have had worse, I’m sure, but I’ll tell you when I’m sitting there, gasping for breathe, wheezing, my eyes bulging out, my veins in my neck bulging and my chest is so tight and painful I can’t stand it… the anxiety is awful, the fear is very real. The pain is pretty bad too.

Fortunately, it only takes a few minutes for it to get better… but those few minutes are excruciatingly miserable. And scary.

WHY IS IT HAPPENING?

Who knows why it’s happening. I came down off the Florinef and it didn’t improve, but a lot of the edema that I had started coming down. The Cytomel I stopped already too, about four days ago, but with the half life of it all, it could still be a few more days until we know if that’s helping or not. I do seem somewhat improved, and my recovery time with exertion is better too, but it’s not enough to think the medication change is impacting anything.

The Cytomel can cause congestive heart failure or CHF symptoms.(<—–scary stuff there).that’s sort of scary too. We don’t know why it’s happening, but the pulse ox doesn’t lie. Neither does the pain and heart rate.

OXYGEN THERAPY SUPPLEMENTATION

So it looks like we’re going to temporarily have to put me on oxygen therapy to keep my sats up. If not, organ failure and damage can begin as early as 92% and I’m going below that a lot. My mother was worried about it, ’cause she says you can get dependent upon it and your lungs weaken, but at this point, breathing becomes more important to me – you know, living and stuff, sort of trumps being dependent upon oxygen. I’d dare say most people are at least, uhm, moderately dependent upon oxygen….LOL I just need a little more, it seems.

It doesn’t bother me so much to need it. I think about how it might limit me, but hell, at this point, I’m so limited anyway, what’s one more thing. The small cases you can carry around are easy to use and carry. So who really cares if I have tubes up my nose or something? I don’t anymore. I just don’t.

WRITING AND LIVING AND DYING AND STUFF

I haven’t been writing anything at all. It felt good to write a blog post, but I’m not getting any stories written or finishing up the novels I’m working on. That must change. WRiting is my sanity and I’ve been rather insane recently. I just can’t seem to find the time, the energy or the space to get into that creative place and write. I want to write. I NEED to write. But it’s eluding me, and it’s killing me faster than being sick is.

My daughter is living with us now, which is nice. I love having her around. It’s definitely added some stress, and I’ve taken on a lot more things than before with helping her get moved and dealing with her struggles. Addison’s disease is a disease that is impacted greatly by stress, so my dosages are all screwed up and I’m a bit imbalanced there. Taking some time to figure it all out.

One thing I’ve learned from this is how much I have lost. I used to be supermom when my kids were younger, doing everything for everyone and loving every minute of it. Today, I could barely hold my head up to pee without falling asleep on the toilet, much less make lunch of dinner or anything for anyone. The muscle weakness from the DM (dermatomyositis) is impacting me so badly right now, I couldn’t even hold the mixer to make a dessert I wanted to make, and that was with my son bringing me all the ingredients and I just sat in the chair.

It’s a five pound mixer, small little thing. I couldn’t even hold it up to mix.

Just think about that for a minute: I didn’t even have the strength or the energy to hold up a five pound mixer for two minutes…

It’s when I’m off the pain meds, and sitting here feeling normal in my head (not right now, but sometimes), that I realize the most how much I’ve lost. I would be sad and mourn the losses, but I don’t have the energy or stamina to do it and my brain can’t stay focused on it long enough to bother.

ONLINE SALVATION

If not for the internet, the authors I deal with, the people on the writing forum, and my friends on FB, I’d dare say life would be worse than it is. My family is great to me, don’t get me wrong, but it’s tough when I see them all running around in super-fast speed and I’m sitting in my chair watching the world go by me. I had a bit of a crying spell the other day, asking, “What am I going to do when my whole family just goes on with their lives and leaves me behind…”

I’m not saying they are going to do that. I just guess maybe I fear it… shouldn’t, but I do. I mean, the last week, I haven’t been able to wash my hair because I can’t hold my hands up above my head long enough to shampoo it. I can’t dry myself off from a shower, because I don’t have the energy to hold the towel, and if I do try to do it, my heart rate and pulse ox go screwy and I can’t breathe. I can’t even sleep, something that used to help me, because I roll over and wake up gasping for air.

So for brief moments of lucidity in between all the mess and chaos, I can get online, post a comment or two, and for a brief moment, feel normal, and maybe look normal to those who read me. It’s a blessing… and it’s a bit of a curse too.

I’M SO TIRED

I keep saying this over and over and I mean it in so many different ways: I am so tired. I’m so tired. I’m tired of blood tests and doctors appointments and tired of being sick and tired of being tired and tired of not being able to breathe or be me or do anything for myself. I’m tired of all of it.

And yet, I keep fighting. I keep looking for answers. I keep trying new things. I’ve improved and I’ve worsened, two steps forward, twelve back, nine forward, three back, two forward, whatever, whatever… I can’t do math–too fuzzy and never liked numbers anyway–but I don’t have a clue whether things are better or worse.

The cruelest irony of all this is that just about three weeks ago, I had nearly six weeks of feeling freaking amazing… six weeks of no pain, more energy, more life to me, was even able to stand to take a shower, was able to walk down the hall of the doctor’s office all by myself without any pain or even being winded instead of having to use the wheelchair. I felt fantastic and my head was clear, was off the pain meds completely… how did I go from there to here in such a short time? I simply don’t understand. I don’t know what changed. I don’t think it’s fair either.

I got my hopes up… such a dangerous thing. Hope is a dangerous thing… that’s the title for a novel if I ever heard one.

So I whine a lot… here on my blog, and in person. My whole life has become about being sick. I can’t plan a meal without thinking about what to make that meets my adrenal and weight loss diet. I can’t shop without thinking about what I can and can’t eat, whether someone can help me with the wheelchair, or recently whether I’m going to be able to even get up out of bed by myself to get dressed to go. I can’t eat out… I can’t go places without someone else being with me. I can’t even freaking walk from the bed to the bathroom without dropping my sats into the 80s and feeling pain. I wait as long as I can to go pee, because I know it’s going to hurt to get up and walk in there. I can’t sing along with my favorite songs on the computer, because that drops my sats into the upper 80s even!

I used to work out, play basketball with my son, go to ballgames, walk every evening with my family… I used to stand to take a shower, stand to cook a meal, and be able to go shopping and provide for my family.

I used to be able to do all these things…

Now, I’m nothing more than a lump in a chair who can wiggle her fingers and type now and again, and even that is hard sometimes.

And I hate that. More than you can know.

BUT… THERE’S ALWAYS A BUT, ISN’T THERE?

The but here is, I won’t give up. And there is some improvement. And maybe they know what’s wrong with me now. Maybe the PM/DM diagnosis is right. Maybe the PGA-II is right. Maybe this is all just a really screwed up HPA and endocrine system and when they finally get all the meds right and titrated, I will feel better and be better and regain so much of what I’ve lost. Maye I will.

And it’s THAT maybe that keeps me going. That and my kids, who still need me. My family who still loves me even if they can run circles around me. My animals that make me smile.

And you guys… all you who read me, comment to me, encourage me, pray for me, love me, etc… it helps, more than you know. More than you’ll ever know.

And then there’s the fact I haven’t made the NYT best sellers list yet… I can’t give up and I can’t quit and I can’t even really let myself slow down too much until that happens. That’s the goal. That’s the dream. I know the reality of it. I know the odds. But I cannot give up, cannot die, cannot quit… not until that happens. So either I need to hurry up and get to writing, or else, I’m going to live forever!

Either way, I think I’m okay with that.

SMILE!

I do laugh. I do find pleasure in things. Don’t think I’m sitting here miserable. I’m not. I do feel sorry for myself sometimes, but I try not to let it linger long. Tonight, it’s just a tough night. I’m so tired. It’s 2:40 in the morning and I need to be in bed asleep and I’m afraid to go to sleep. I’m afraid to stand up and walk to the bedroom, ’cause I know my sats will drop and it will hurt. I’m afraid some nights I’ll fall asleep and won’t wake up. I’m not ready for that yet.

But I have love. I have family. I have friends. I do have my writing and my stories and the work and the internet and the animals and good things do move through and into my life… and for those things, I am exceedingly grateful, humbled, and amazed.

It has to get better… as Andi said, I command it.

Love you all.

Love and stuff,
Michy

 

 

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16 comments to I Fell Asleep on the Toilet

  • Cin  says:

    Michy,
    I wish that I could offer you something other than hope that it will get better; some insight into what changed and why. I can offer this insight about what is happening to me and comiserate because it feels like such a defeat, such a step backward.
    After nearly two years of a gluten-free diet, we ignored the diet when we went on vacation. We have at times, had cheat nights before, so I expected something of a relapse. But what happened, while I was in Seattle, was that southern Illinois got encompassed by the damn heat dome that weather forecasters keep talking about. When we got home, it was 99 degrees, or 110 with the heat index. Since then, I’m not sure if we have had a single day that didn’t hit 90 degrees. If we did, it was a single day here and there.
    My MS symptoms came back like gangbusters. I was suddenly stumpling and off balance again. After more that a year without a fall, I was having trouble walking. I haven’t fallen again, but it doesn’t matter. I had begun to trust my body again, to believe it would respond as it should. It isn’t.
    When we got home, we went back to the gluten-free diet and I thought the symptoms would ease again. They did–sort of. Unfortunately, every time I go outside or somewhere without incredible air conditioning, they are there within moments. The edema, the loss of balance, the stumbling. At the gym Tuesday, my foot kept slipping off the pedal of the stationary bike.
    Thor tries to understand, and probably does better than most people, but having not lived it, he doesn’t understand how quickly it comes on and how sporadically. Last night, he asked me if I wanted to go out on the lot with him, to help him cut locks for the auction today. It seemed like an easy way to hang out with him. Within minutes, I realized I should have said no. He was hot and sweating; I was feeling the telltale muscle trembling and weakness. He tries to encourage me, to tell me that the weakness won’t get better if I use my hands to assist in the lifting my feet when I try to untie my shoes. What he doesn’t understand is that right now, I can’t lift my right foot without assistance.
    It’s nowhere near what you are fighting through, yet I feel like it lets me peak into your world. And nothign is so crushing as the loss of hope…
    (((Hugs))))

    • Shana Dines  says:

      I am so sorry for you too Cin. I feel like I have no right to complain, but pain and misery is something that I can relate to. love and prayers Shana

    • admin  says:

      Cindy, I think that’s a big part of the frustration of all this: Not trusting your own body. We live in these bodies; they are more than just shells; they are our everything… and when we can’t trust them, it’s hard. We can’t make plans, because we can have the best of intentions, but then at the last minute, a symptoms crops up and we can’t do something we want.

      I’ve tried and tried to get myself out to go see Pirates with Lynn. She loves Johnny Depp, and loves Pirates, and she does so much for me, I wanted so badly to do this one little thing for her. So we bought tickets online, and they weren’t cheap – IMAX, 3D, everything… and then every time we planned to go, something prevented it — every time, my health wouldn’t let it happen. Then a while back when I was feeling good, we were going to go and instead, found they had already changed to Harry Potter at the IMAX… now, she missed it, and it was my fault.

      It’s those things that hurt me the most… Ryan’s in Odessa right now. I need to get to Odessa too, to close out my house and get it ready for selling, to get the last of my things still there at both houses and such… it’s just, the drive to the doctor’s office an hour away nearly did me in, so how am I supposed to go to Odessa, ten hours away now?

      I thank God and the universe daily that at least I have my mind… though sometimes it’s fuzzy and I am having memory problems right now (probably due to the low oxygen), I am still sharp and can still write and in print and on the web, I can still appear normal too… without that, I think I would have gone insane a long, long time ago.

      I hate and love that you understand… it sucks that someone else suffering makes me feel better, but it’s just so good to be understood… I know you get that.

      Love and stuff,
      Michy

  • Shana Dines  says:

    It sounds awful Michy. I too get discouraged and then reading this, I feel I have no right to bitch. I have horrible sleep apnea and when was first diagnosed thought I would die. I am claustrophobic and was terrified. I have used the f*Ing machine now for over 6 years and I am better as far as not sleep and oxygen deprived but hate using it. Now I am just in pain all of the time with scoliosis and I believe fibromyalgia. I am on neurotin which seemed to help at first but still hurt all of the time. Deformed vertebraes in my lower back and upper neck. feel hopeless sometimes and think, what will it be like as i get older? I am with you. I am sorry that you are in this situation. Praying for you love shana

    • admin  says:

      Shana, I feel for you. I have adult acute scoliosis, with a twisted spine… you can see my x-rays here:

      I have dessicated discs from T7 all the way through the S2 joints, and have spinal stenosis and disc compression. 7 Discs in my back are ruptured. Most days, that pain is controlled by the steroids I take for another condition, the PM, but the sciatic pain isn’t touched by anything and when it hits… OMG…. wow. I get it.

      If it helps any at all, my back doc told me that this type of pain actually IMPROVES as we age, because with the stimulation the nerves causes them to de-sensitize… he says that massage and stretching, chiropractic care when sciatic is at the worst, and that as I get older, it might worsen some and then improve. The main concern is just avoiding fractures and strain in the meantime.

      My best friend uses the CPAP machine – have you tried using a Bi-Pap instead? I’ve heard that people who feel claustrophobic with the CPAP sometimes prefer the Bi-Pap. Also, she uses a cannula that comes into the nose from up over the head, so that her face isn’t covered at all when she wears it – very lightweight. It’s helped her immensely.

      I don’t have sleep apnea, but I’ve seen the devastating consequences of it. Buffy calls it: Dying by inches… I’m sorry you’re dealing with it, but so glad it’s helping you at least a little. (HUGS)

      Love and stuff,
      Michy

  • Jenn  says:

    Sometimes, I feel bad for myself…more than I should probably. But then, I remember all my friends like you who are going through so much more and I realize that my problems are petty in comparison.

    You are constantly in my thoughts and prayers Michy! ((Hugs))

    • admin  says:

      Thanks, Jenn. Hey, I used to tell a friend of mine, “If you slam your thumb with a hammer, does the fact my back hurts make your thumb hurt any less?” She said, “No…” so I say, “Well, then stop it!”

      But truth is, no one else’s pain and suffering makes yours any easier to bear, but I do know that sometimes I can count my blessing when I am reminded it can be worse, has been worse, and I’ve survived that, so I’ll survive this.

      We all struggle with our own pain and suffering and problems… they are all very real to us, and it’s hard sometimes to keep perspective. Sometimes, stopping a moment to pray for and send energy and good thoughts and wishes to my friends online helps me feel better about my own situations too!

      (HUGS)

      Love and stuff,
      Michy

  • Lindsay Maddox  says:

    You are allowed to whine, my friend. You’re allowed and entitled and yet, you’re still finding the silver lining in all of this yuck.

    You inspire me and make me appreciate what I have and who I have in my life. Thank you for that.

  • Cin  says:

    Michy,

    I’m so sorry you didn’t get to go to see Pirates with Buffy. That sucks!

    And yes, while I don’t want anyone else to suffer, it’s nice to know that someone totally gets it. Most of the time these days, I “don’t look sick” and I’ve grown fond of not feeling sick either. Much as I love my job here, I *need* to move somewhere cooler.

    I wish moving would help you too.

    • admin  says:

      Me too.. but you know what? We still have a date to walk on the beach! We’ll just do it in January when it’s cold…LOL

      Hope the heat and humidity dies down for you soon and you’re feeling better!

      (HUGS)

      Love and stuff,
      Michy

  • Beth  says:

    I wish I had more to offer than a sympathetic ear and a willing shoulder. Your health issues are so complex and unpredictable that making definite plans is all but impossible. It’s got to be incredibly hard to have to temper every acceptance with “I’ll try” or “if it turns out to be a good day,” rather than being able to just make plans, confident that you’ll be able to follow through and enjoy yourself.

    I hope this changes and that you permanently get back what you had for a few fleeting weeks.

    • admin  says:

      Beth, just listening, or in this case reading, and commenting and being my online friend… that helps. It makes me normal if that makes any sense… I love you all for that, so much more than you can imagine.

      Just think, even 10 years ago, this would have been different. I would have been so isolated, but now, I can connect with you guys – and even if I go into the hospital, I’ll have the computer and can still connect with the world… with people who mean so much to me, even if we’ve never met in person.

      I love the internet… it’s changed so much positive in my life, working from home, being independent in a time when I’m so dependent… and having friends I would never have, socialization I couldn’t have, without the computer… it’s an amazing thing!

      Love and stuff,
      Michy

  • Rissa Watkins  says:

    So sorry you are going through this Michy. I wish I could take it all away. What you are going through sounds so scary.

    • admin  says:

      Rissa, that’s the hardest part – feeling bad, I can handle, especially when it’s my ‘normal’ stuff, and I know what it is and why I feel bad. The not being able to breathe and the new stuff I’m not used to have happening, I don’t know what it is, so that’s scary to me.

      I’m really worried about the congestive heart failure – I’m praying that it’s just side effects that look like that, and the cardiologist will say it’s nothing… we’ll know on Monday.

      But yes, the scary factor is what gets me the most… the fact that they say I could just drop over dead at any moment… that scares the crap out of me.

      I’m so glad you’re home, Rissa! I hope you’re feeling fantastic!

      Love and stuff,
      Michy

  • Angela Parson Myers  says:

    Can’t believe now that I complain because I’m getting old. Will try very hard to stop that. Also will say a prayer for you if you don’t mind.

    • admin  says:

      Angela, prayers are always welcomed and appreciated. Thank you so much for caring (HUGS)

      Love and stuff,
      Michy

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