Tag Archives: muscles

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Spoke too soon. Again.

This is such a sick joke. I actually thought the last few days, maybe this is the beginning of the end. I think I’m going to get better now… What’s wrong with me? Am I going to spend the next 20 years thinking this is over every time I have a day when I’m able to move? I’m so angry about the tease. I’m so angry about the Catch-22: I can’t move without hurting myself and, if I don’t move, I’m hurting myself.

I had a horrible night’s sleep. Didn’t fall asleep until nearly 2am, had nightmares, awoke constantly, had drenching sweats. Today I feel like a truck hit me. All of my muscles feel inflamed. I’m hunched, I’m hobbling, I’m creaking, I’m wheezing. My spine is rebar, my eyes are embers, my head is a rotten apple.

But my mood isn’t plummeting into despair. It’s just sitting in anger, which, for me, is much more manageable. My stages of grief (denial, anger, bargaining, depression, and acceptance) seem to be mixed up. You’re meant to go from depression to acceptance. I’m going backwards. I was in depression last month, denial yesterday and today I’m angry, so let’s get straight to bargaining: I would give a limb to be out of pain. I would give two limbs to not have this disease. No contest. I will never, ever work myself close to death again and neglect all my friends and family. I will do nothing but altruistic work for the rest of my life, if this is taken away. I could bargain for days.

Now I hope we can just jump over depression and get straight to acceptance.

 

 

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My Overnight Sleep Study in the Hospital.

Check-in for the overnight sleep study was at 7:30pm. It was downtown in what looks like an office building across from the hospital. My husband drove me there and, when we arrived, the lobby was filled with overweight men. One of them was coughing, so you better believe I put my surgical mask on in the elevator. My husband doesn’t even blink an eye at this behavior. But, you know what? The last time I was getting my blood drawn and I explained to the phlebotomist that I didn’t have a cold, I just didn’t like being in the main public hospital because if I got sicker it wouldn’t bode well, she said, “That’s good! Protect yourself! You should!” And there are people out there who will think I have a cold and be grateful. I, for one, would be very grateful if someone were wearing a mask on a plane. The sickest person I’ve ever come in contact with in my life was sitting next to me on a plane. At the time I wasn’t paranoid, so I didn’t say anything, which I can’t believe. Somebody must have, though, because the air hostess (what are they called now?) tried talking to him — to help him or get him off the plane or something. I have no recollection what happened in the end, actually. Did I sit next to him the whole journey? Shudder.

Anyway, the check-in at the sleep clinic involved filling out the 4 EXACT SAME PAGES of forms as I had at the sleep clinic consultation. I will never understand why they do this to patients. Finally, about a month ago, I got savvy and created a google doc with all my allergies, over-the-counter meds, prescription meds, the reasons I take them, the dosages, when I started, when I stopped etc… So, I just print it out and take it to every appointment. To fill all that in on their forms might literally take hours. Plus, it would be very tiny writing. The room was like a hotel room: flat screen tv, shower, toilet, sink, bed… and 65 degrees. That’s like a walk-in. Okay, a broken walk-in, but that’s very cold for me. The tech told me to get into my pajamas and she would be back to take me to the electrode-placing room. This room was even colder. I sat in my little shorts and top shivering as she spent a full hour placing electrodes all over my scalp, chest and legs. She also put tight belts around me chest and waist. The whole time she was explaining things in her thick Russian accent. I was in Moscow in the 80s, I said. I traded my jeans for cigarettes and badges. Her eyes grew wide, Oh, when it was still the Soviet Union? But, these were beautiful badges and cigarette packs. In fact, I think I have the latter somewhere in a box with my Kiss (the band) bubblegum cards. If I can find them, I’ll post a picture. 24-year old cigarettes!When she was done, I looked like this:

I put another blanket on the bed, cranked up the heat in the room and lay down to read. I brought a suitcase; I came prepared. I brought Gatorade and snacks and pain-killers. I brought a bowl and oatmeal, a mug and teabags. But, really, there is no time for anything. By the time she’s done with you, it’s 9:30pm and she is going to be waking me up before 6am. That’s lovely ~ let’s take a bunch of sleep-deprived people and wake them at the crack of a sparrow’s fart (as my husband says). Even if I had asked the tech to heat me up some water for tea so I could warm up (the hospital paperwork said there was a microwave in the room, so I thought I’d be able to do it myself), I wouldn’t have been able to drink it comfortably because I had wires attached to my chin and things up my nose and even raising your arm is an ordeal. Once you are hooked up, nothing comes on or off and you can’t go to the toilet without waving your hand and calling out (because the tech is watching you all night on infrared cameras).She took my blood pressure which was 109/64 (quite high for me — thank you, chicken broth dinner) and ran me through a series of sensor tests (“point and flex your left foot, make a snoring sound, breathe through your nose only” etc.). They have sleep number beds which I thought was great ~ I always wondered what they were like. Holy shit do they suck. Do not fall for the infomercials! I lay there for an hour and a half trying to get comfortable and fall asleep. I listened to my sleep meditation 4 times in a row. I pressed the “softer” button on the mattress remote control about ten times. For those of you with fibromyalgia or any chronic pain, this is a woeful experience. Every wire, every electrode, every inch of the belts hurt my muscles. Plus, I’m on the thin side, so my bones felt like I was lying on concrete. I was like princess and the pea only the peas were jagged rocks. They want you to stay on your back, if possible, but, after the tenth time waking up in pain along my spine, I rolled to my side, not caring what wires I compromised (don’t worry, if a sensor falls off, the tech is alerted and comes in to replace it). I woke up at some stage and waved my hand and got her to disconnect me so I could go to the loo. I woke up at another stage and pushed the mattress “softer” button about 50 more times. I woke up at another stage and drank some water ~ very dry rooms. The one thing I forgot was my throat spray which would have helped with the tickle. I did have a lozenge in my purse on the other side of the room, but I wasn’t going to call the tech in for that. Hint to anyone doing a sleep study: put anything you think you might want by the bed before the tech hooks you up! I woke up again sweltering, had to push the covers off, take my knee-high wool socks off (Raynaud’s, remember), but no drenching night sweats, thank god. I woke up about 5 times with my neck tweaked to bits. The pillows are HORRIBLE. Why didn’t I tell them I had to bring my own pillow because of my neck injury?? (another hint) And then, at 5:55am, she woke me, ran me through the tests again and took my BP (80/51 ~ oof, I’ve never seen it that low unless I’m in a faint. Is it always that low in the morning?). With the lights on, this is what I found my face had been on, the pillow case slipped off:

Am I in jail? How many drooling, sweaty fat men have slept on that rag of a pillow, I ask you? Ew.

I assume most people shower because the goop they put in your hair is very thick and does not come off without hot water and shampoo, but I just wrapped a scarf around my head and went down to meet my husband. Half an hour later, I was in my own bed, with the electric blanket on, vertebrae cushioned, neck supported, more thankful than I have ever been in my life for a good mattress (Bragada is the brand, worth every penny) and a foam neck pillow (free with the Bragada!).

I don’t get the sleep results for 2 weeks. I guarantee the doctor tells me to take a sleeping pill.

Today, I am having a hard time breathing. My heart and lungs seem to be spasming, so I am going to spend the whole weekend trying to rest and praying praying praying that I don’t fall into a deep, dark crash tonight or tomorrow. Please let me get through that clinic visit without becoming bed-bound, weeping with pain and exhaustion. I’m just now slightly starting to feel less depressed, I need this triumph. I need to do one thing without my body punishing me.

Family and friends: I could have made this post half the length and then answered some of your emails, so I apologise… I’ll try to reply to you all tomorrow and not post on the blog.

Gratitude today is for our bed ~ the first big purchase for our new home in 2006. I had slept on a futon and my brother’s couches (in my 20s, I crashed with him in 3 different apartments) for 6 years before buying my first grown-up (cheap) mattress for my first grown-up apartment when I finally decided to stop being a nomad. Never underestimate the power of a decent mattress. I’m going back to mine right now. And I still have the goop in my hair.

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Sick, month 11

E., that last post was for you. A tribute to our youth that has taken on a different meaning now.

I spent the weekend in bed for the most part. Today starts a fortnight of medical appointments every single week day. I’m worried about this. I should probably reschedule some, but they’re all ones I’ve been waiting for: overnight sleep study, neurologist, the Good Doctor follow up, a ten-week group therapy class that allows me to keep seeing my therapist for a little while longer for a much lower price tag, albeit in a group. Eek. I’m not a big public sharer, believe it or not, although maybe it’ll be okay because I am an open book, especially after this illness: I have never cared less what people think of what I say or how I look. That doesn’t mean I don’t care if I offend people or I don’t care if I smell, rather, I have no problem wearing no make-up, crying snottily, and talking about my bowel issues and crushing grief. Why disguise? What is there to hide?

Physically, I think I am worse than I’ve been since I left work. The pain is not as bad as it was in the days after my Big Day Out on the 13th, but, when the debilitating pain eases up, the regular pain, aches, exhaustion and flu-like symptoms are waiting underneath. As I mentioned before, I’ve only left the house 3 times in 11 days (for doc appointments). I haven’t gone to the grocery store, the drug store, the dog park ~ I haven’t done anything and I usually would be feeling a lot better by now. I feel faint, I am clammy, I keep getting a pitter-pattery heart and tight breathing, I am absolutely exhausted, I have a bad headache (this morning, there is an expanding and contracting ice pick in the back of my skull on the left), my muscles are stiff (I’m trying to come up with a better description ~ I walk and bend like the Tin Man, like I have immobile metal braces attached to all limbs), both hands and all fingers are in pain (haven’t had that in a while), and a new one: my leg muscles ACHE. They feel like they need to be moved and stretched, which is probably exactly what it is, but, it hurts. I lay in bed jiggling them, tensing them, punching them, trying to get the throb to ease up. And my brain is mush. I’m excited that I can type this morning because last night I could barely form sentences and not feeling smart is scary. Actually, the worst is not feeling quick anymore. The thing I valued most about my brain was how fast I could interpret, anticipate, respond, reason, argue, predict, accomplish… and I could tackle 10 things at a time. The ultimate multitasker. Gone.

Medicinally, I am taking a quarter of a Norco before bed, as well as my thyroid hormones, antihistamine nasal spray, albuterol inhaler, birth control pill and all the supplements and IBS-helping products. That’s it. I want to start something new this week ~ antibiotics or Lyrica or the Chinese herbs or something. I have an electric blanket on my bed, have changed to flannel sheets (heaven) and I’m trying a sun light box thing, which “is sure to deliver a therapeutic sense of well-being in any setting”, says the leaflet.

Emotionally, as I’ve said, I’m not in a great place. When you really start researching M.E., you realise that people don’t recover very often… hardly ever. So, I’m in this terrible shock-plan-grief cycle.

This can’t be happening. Okay, I’ll try X/Y/Z treatment. But, why? I’m just going to get X/Y/Z side effect.

I can’t believe I’m getting worse, not better. Okay, meditate, stay positive, have hope, keep going. But, there was so much I didn’t do, there was so much I didn’t try, there was so much I didn’t accomplish… Now, it’s all gone.

Wow, based on case studies, this can actually get much worse. Okay, I will concentrate on constant rest, every day. What’s the point? I’ll never have a life back, I’ll never have my health back, I’ll never have happiness.

My husband said, “You had the same problem riding a motorbike. You have to look where you want to go and lean into the curve with your eyes ahead of you. You have to focus on the point you want to get to.” I never looked at the end point; I was always afraid of the lean. I was always looking at where I was ~ scanning the ground for danger, watching my speed, making sure I hadn’t left my turn signal on ~ and not where I was going. Which is ironic since I know I am a future thinker and a constant planner.

For example, I have planned the documentary that I am going to make about M.E. I am going to travel this world and interview patients, doctors, people who have recovered, caregivers. It’s going to be informative and moving and it’s going to make some noise.

I have also planned the business I am going to start to bring services to home-bound patients. It’ll encompass everything: walk/wash/groom/play with your dog, wash your dishes, change your bed clothes and do your laundry, clean your home, mow your grass, cut your hair, take care of your feet, talk to you, listen to you, help with your meds, help you fill out paperwork, help you organise your files/calendar/appointments, bring a mobile library of movies, music and books from which you can borrow for free … I will have subcontractors that bring their services to your home. For example, landscapers, vets, acupuncturists, massage therapists, physical therapists, reiki practitioners, reflexologists, guided meditation helpers… It’s going to be epic and so fulfilling.

I have also planned to get a medical degree and go into research on M.E. Or, even better, doctor education. When I have some letters after my name, I will find a platform in the medical community and make some noise.

I have also planned to become a yoga teacher, a salsa dancer, a chef, a marathon runner, a gymnast, a horse rider, a dog trainer and, of course, a writer. Although, maybe, after years of this, I’ll be like Laura Hillenbrand and just not want to go there ~ Not want to write about M.E./C.F.S. because I live it.

Hope is hurting me, but only because I so desperately want to conquer the world. I am grateful for every minute of every day that my legs hold me up and my brain still works.

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Just an update… not doing well.

Hey everyone,

I’ve taken a turn for the worse. I haven’t really recovered physically from my Big Day Out on the 13th. I’ve only left the house three times in the last week: therapy, acupuncture and the stress test appointment. Eight days without much improvement is unusual for me. That, in turn, has sent my mood into some deep, dark depths. That, in turn, is making my physical symptoms worse. My headache is constant, my back is in very bad pain, I sprained my neck in my sleep and it’s the worst it has been in months, my chest is tight, my concentration and cognitive abilities are shot. I kind of want to (jump, dance, laugh, sing, run) crawl into a hole and come out when they discover a cure for this disease.

I want to go off the birth control pill, but I’m afraid to. I want to take the Lyrica, but I’m afraid to. I want to take the Ambien, but I’m afraid to. I want to take the Chinese herbs, but I’m afraid to. I want to take an anti-depressant, but I’m afraid to. I want to try medicinal marijuana, but I’m afraid to. Yesterday, I wound up taking two quarters of a Norco for the pain, spaced out by about 8 hours and today I feel it ~ a sort of Norco hangover. I know it’s crazy, but my body is that sensitive and I am that sensitive to my body. I feel everything and I don’t want to help my pain, but cause edema or help my mood, but cause chest tightness… or whatever.

More than anything right now, I am mourning the loss of my husband’s old life. He has to do EVERYTHING and I’m not sure how he is holding it together. I am begging to talk about this and cry about this and be counselled about this all the time. He’s like, “What would you like for dinner?” And I say, “My fucking body back. A cure. My pain to go away. My fear to go away. My life to come back.” Only, I am currently unable to say it with a smile. So, I don’t say, “Pain-killers for an appetizer, a winning lotto ticket for the main course and a lobotomy for dessert, please, honey!” Instead, I look at him and start sobbing, “Why would I care about food? I just want to NOT BE SICK ANYMORE, don’t you get it?!”

One of my dearest, oldest friends is coming to see me today as she passes through town. She is vibrant and beautiful and I wish we could catch up without my sadness cloaked around me and my disease stepping on my shoulders. The day before yesterday, summer left. It’s now winter. Just like that. I am grateful for hot water bottles.

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F.E.A.R. … for everything, a reason.

I have so much to say and nothing to say. I have never been so emotional in my life and never been so numb.

Quick recap: while having a “good day” last Thursday, I met with my old bosses, went to a two-hour doctor appointment and walked around the dog park for an hour. For five days afterwards, I was in extraordinary muscle and bone pain, had crushing headaches, could barely move, couldn’t stop crying and have had night sweats every night. Last night I took a quarter of a Norco and it took the edge off the pain. A quarter of a pill! People take, like, ten of those a day. I don’t get it.

After researching the number of cases of M.E. that are significantly worse because of enforced exercise or the patient pushing themselves, I am hanging in this limbo of fear. Fear of unintentionally overexerting myself and setting back my recovery permanently. Can I not go to the dog park? Should I not be talking on the phone? Should I stop people from coming to my house? Because the second I feel better and the pain eases up, I want to do things. And by “things” I mean take a walk, try cooking a meal, fold the laundry, play with the dogs. And what if I try drugs that make me feel better? It’ll be even harder to refrain from activity. God forbid my pain is taken away and I walk upstairs too quickly or laugh too hard. I’m also in fear of losing all muscle mass, all flexibility, all joint movement, and, scariest of all, fear of irreparable damage to my bones. Years ago I was diagnosed with osteopenia in my hips after a bone scan. I think it was 0.1 point off putting me in the osteoporosis range. They told me to take calcium, vitamin D and do weight-bearing exercise. Did I do any of those things? Nope. I started taking vitamin D about 6 months ago, I still don’t take calcium and now I’m not eating dairy and I’m unable to do weight-bearing exercise. Or cardio, obviously, which is sorely needed, since I’ve never done cardio workouts. My job was my exercise ~ running around restaurants ~ and yoga, too, back in the day. I’m also in fear of the drugs that might make me feel better. I don’t want to try 20 antidepressants to find the right one, I don’t want to put on 30 lbs from Lyrica or gabapentin, I don’t want to feel groggy and crazy from sleeping pills, I don’t want to deal with weaning off and withdrawal symptoms… But, most of all, I’m terrified of an allergic reaction. Having experienced anaphylactic shock, swollen tongue, not being able to breathe, syncope, headaches that feel like you might die, low pulse etc… I know how scary it is. And I hope I never have to use my Epipen because I HATE epinephrine. It feels like I’m jacked up on speed and not in a good way. It feels like it stops my heart and then zaps it back at 5 times the normal heart rate ~ I won’t even let them use it at the dentist, I’d rather have a 100 injections in my gums than just one with epinephrine that’ll keep the anesthetic in my body. Finally, despite my 8 commandments, I am in fear of being home-bound (not homeward-bound, big difference. I wish I was…) for the rest of my life and losing my mind. Or, worse, being drugged out of my mind and my husband having to take care of me and losing his mind. Or, worse, getting worse in this disease or another disease or getting a cold or a chest infection or food poisoning or any of the millions of things that could make this so. much. worse. … and not caring anymore whether I even have a mind to lose.

So, my doctor appointment today. I had a physical and a stress test. They told me to fast for blood work, which turned out not to be necessary. I don’t know about you, but, not having my tea and breakfast in the morning messes everything up — and now that includes my supplement schedule — so, I was not functioning. I was shaking and achy and cold. My blood pressure was 84/60, my temperature was 99.4. A doctor finally touched me! He poked and prodded and said my labs looked fine (cholesterol, liver). Shocker. He wanted to do X-rays of my spine but I asked him to hold off because I have had a LOT of radiation lately and in life. He referred me to a neurologist and a rheumatologist (more doctors, yay) and gave me an Rx for Ambian CR and Lyrica.

I said, ” You’re starting me at the lowest dose of Lyrica, right?”
He said, “Yep, 75mg twice a day.”
I said, “If there is anything lower, PLEASE start me lower.”
He said, “Ok, 50mg twice a day.”
I said, “Ok, 50mg once a day.”
“Ok…50mg once a day to start with…at bedtime.”
“No, in the afternoon so I can monitor the effects.”
“Ok, fine…to start with. See me in a week so I can see how you’re doing on the Lyrica.”
“See you a week after I start the Lyrica?”
“Yes, which will be in ONE week because you’re starting it tonight.”
“Don’t count on it.”

That’s the exact conversation. I then went to do the stress test. They hook you up to electrodes and put you on a treadmill. It took about 45 minutes to get to the standing on the treadmill part. For fuck’s sake, I don’t care if you see me take my shirt off, you don’t have to explain everything in minute detail at a snail’s pace, I know what an electrode is, I know what a heart is, I am freezing and hungry and I’ve had no tea and I need to get home and sit down, hurry up! Here’s the sad part, I walked at 1 mile an hour for 2 minutes. It felt fine, like being at the dog park. Then she increased it to 2 miles an hour. This was fast for me. I don’t walk this fast since I got sick. I did it for 2 minutes and then the incline increased. I was fine, but starting to get worried about the repercussions. My thighs started to burn, but I was fine, it actually felt good. Burning muscles! What I would give to work my muscles so hard they burned from the effort and the next day I would be sore and think, “I had a great workout.” But, after the past 5 days, I was so scared of what this atypical movement would do to my body. The fear of tonight, the fear of no tomorrow. At the 6th minute, when the incline went up again and I really wanted to push myself, see how high my heart rate could go and feel my breath quicken, I quit. I felt okay, I felt I could have pushed through. I probably even could have run briefly, but I was too scared of what it would do to my muscles and how it might set back my recovery. The monitor moved and blipped steadily with my heart… But it didn’t show it breaking.

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