Category Archives: My story

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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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Appointments, tests, symptoms

I’m still dizzy. I’ve been dizzy for about 5 or 6 days now. Just unbalanced — things look odd, the world feels like it is slowly drifting to one side. This is different from the acute vertigo attack I had last year at the beginning of this illness and this is different than the “white-out” I’ve experienced my whole life when I stand up because I have low blood pressure. Last night, I woke up with stabbing pains in my stomach. I stayed awake for two hours, deep breathing. I don’t know if it was gas or what. I don’t care — I just want to track it. Other than that, my symptoms are: horrible headache, terrible back spams (mostly lower), my hands ache, neck pain, low-grade fever (99.7 when I took my temperature yesterday), and gritty eyes. But these are more like stone eyes or boulder eyes. Both eyes have what I used to call styes, but, upon deeper Internet exploration, may be something else… They’re not red or inflamed, they are small blisters on the inside lids. My top lip is swollen with some underground cystic acne nastiness. It looks like I was punched in the mouth. I look great, wish I could go out and socialize. But, seriously, I just miss feeling pretty. I miss getting dressed at all, let alone dressed UP. I miss not being in slippers.. a great pair of boots, a belt, jewelry … I miss brushing my hair and putting on mascara. I miss I miss I miss…

My thyroid hormone test results were fine. My liver and cholesterol panels looked fine. My bloodwork looked fine.

My first appointment of the week was acupuncture. He concentrated on harmonizing my shao yang symptoms which, according to Chinese medicine, are the alternating chills and fever I get daily.That night, after acupuncture, my daily headache became excruciating. It woke me up multiple times in the night. I thought it might have increased in severity from the acupuncture, which could have been true, but after the lingering brain cramps this morning, I actually think it might be from the Norco. I realise this is nuts seeing as I only took a quarter, but I can’t take Vicodin because of the headaches they give me and they’re the same ingredients.

I had my follow up with the Good Doctor on Tuesday. She said I seemed very tired and beat down. She thought it wasn’t a bad idea to take a holiday from the supplements if I felt overwhelmed and thought they might be contributing to the headache. But, she said I had to give my brain a holiday, too ~ stop worrying, planning, researching. Easier said than done. She didn’t want me to go off of the supplement and the birth control pill at the same time, which is fine because it’s not possible to go off the pill until I have a decent pain killer option. She had not received the results from the stool sample even though it’s been three weeks. She said once again, I never have these sort of troubles with labs! Stay tuned for the scathing essay I will write one day about medical mistakes. She said narcotics can absolutely give you a headache when you take them and give you a headache when they wear off. All in all, it was a pretty wasted trip. I think she took one look at my face and decided to concentrate on consoling me. Although, she did say she thought I should consider a brain MRI since my headaches are increasing in severity and waking me up at night. I think this disease is an autoimmune problem and/or a deep-seated pathogen that is causing neurological problems on top of all the others. I don’t think I have something that will show up on an MRI.

I also had a therapy appointment that day, too, and, since my chauffeur was also my spouse, I invited him into the session. It was good — for no other reason than they got to meet each other. I cried the whole time, explaining my guilt that he was doing so much and my grief that our lives had disappeared and my regret that we never did X/Y/Z before I got sick. Interestingly and to my relief, my therapist said that everything she has heard from me in the last few weeks is depressive thinking and is brand new. She said this whole year I have had anxiety over my sickness, leaving my career, what the future holds etc. — but that I had been a “trooper”. The depression of the last month is new and situational. I needed to hear that. It helps me say, get your shit together, girl, this isn’t you! When you are consumed by grief, it’s hard to remember what normal feels like. Even normal in sickness.

Today, I talked with an advocate for the M.E. Network with whom my aunt put me in touch (even my extended family has rallied to help me — I am very blessed). She is a nurse and had M.E. and recovered. She is adamantly against psychiatric drugs and she gave me her reasons. I agree with her and it was good to hear a healthcare worker not pushing the meds and talking about how compromised things have become because of pharmaceutical companies and their drug-pushing reps. However, getting a good pain killer and possibly an anti-anxiety or anti-depressant was my next course of action and now I feel hopeless again. Part of me just thought, if I give in and dope myself up, life would feel better even if it wasn’t better. She cautioned that M.E./C.F.S. patients’ brains are already compromised by the disease, so psychiatric drugs can make things much worse. I feel like I’m back to square one. Truly, my Rx is rest, short walks, baths, meditation and time…. while feeling like I’m dying for who knows how long? People have gone through worse. People are going through worse.

I’m grateful I’m not going through worse. This took me three days to write.

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let’s just take it slow in this home on ice

I’ve been cold my whole life and I I’ve never made any great effort to help my situation. Even now, at the age of 39, I have to remind myself that there are options and I’m a big girl – I can buy thicker socks and not keep wearing the ones I got from the dollar store 15 years ago. Like the aforementioned heated vest for the motorbike that my husband bought me. I told him I was going to return it — I probably wouldn’t wear it often enough to justify the cost. I not only wore it every day during the winter, I wore it in the summer, I wore it to the dog park, I wore it going out to eat, I wore it in the house, watching tv. I never, ever would have thought of purchasing something like that. I like thin, tight material, tshirts, layering. I’m short, so never wanted to bulk myself up. There’s a photo somewhere of me skiing as a teenager. I am wearing black jeans and a pretty light-weight jacket. I basically look like I could have been walking down the street in, say, the autumn. All the other we-ski-every-year types are wearing the puffy snow pants and fancy hats and goggles. I went to college in Wisconsin, but can’t remember wearing any shoes other than Vans and Adidas. No snow boots? Seriously? If I weren’t sick, always had warm feet, had endless money and didn’t have a skeleton to worry about, I would wear very high heels every day. I love being 5’5″. I love strutting and sashaying.

My best friend and I used to get dressed for school under the covers while still in bed. We’d dash across the room to grab any article of clothing that wasn’t within reach and dive back under the duvet, artfully swapping our sleepwear for our school clothes while lying down. There was never enough hot water in anyone’s house in Ireland for multiple people to bathe and you certainly wouldn’t luxuriate under a scalding shower for 15 minutes to get your core temperature up. We were both diagnosed with Raynaud’s, too. My Mother used to say “Che gelida manina!” whenever she took my hand. To this day, I relate cold hands with jellyfish because my childhood brain latched on to the “geli-” part.

I’ll never forget going to Edinburgh with my husband in the infancy of our relationship. I never made an effort to get good socks or invest in warm, practical boots or a proper winter coat or hat or gloves… I dressed the same way in winter and summer, I just took off a few layers. Walking around Edinburgh castle, my toes were bloodless greyish-white blocks of ice. We stopped every so often so he could put my feet under his shirt on his stomach, rubbing them gently in the hopes that they wouldn’t fall off. It was useless. Nothing can really bring back the blood except hot water. And then the blood pools in my feet until they’re hot and swollen and fit to explode.

A few years ago, I bought Uggs, not caring anymore that I’m 5 feet tall and they have no heel. I started wearing wooly tights under my jeans, remembering that’s what we used to do when we were kids. Then I bought a hat with fuzzy ear flaps because, if Frances McDormand could pull it off, so could I.

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And last week, I got my first heated blanket. Well, heated mattress pad. I only turn the heat on on one side so I can move to different areas of the bed depending on whether I am in fever or chill mode. My Mother has always had an electric blanket, I’m not sure why it took me so long to decide to get one. For Christmas, I want one of these:

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I am grateful for hot water and my bath tub.

Title Credit

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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.