Tag Archives: drugs

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An Update on my day-to-day…

Here is an update for those of you that have tried to contact me. I’m okay. Not great, but okay. After the Worst Headache, I had an up-swing for two weeks, feeling like I had more energy, less pain, more mobility and JOY. Today is day 14 of the subsequent down-swing. I have been struggling. I’m in constant pain, which gets worse in the evening. I have a headache and sore throat every day, my neck and my lower back are stiff, inflamed, screaming. There are jolts up and down my spine. My hands ache, my jaw is tender and I don’t even recognise my eyes anymore. Sunken and puffy, swollen, red, dry and circled with purple. I’ve had a hard time getting out of bed in the morning, I’ve only been able to do my stretches every other day, I’ve only been able to do 2 to 6 laps of the house, I’ve been walking somewhere between 1,000 and 2,000 steps each day. I haven’t been sleeping very well and my deep sleep keeps dwindling (according to the Zeo). However, I’m still walking, I’m still talking, I’m still sitting at a computer, I’m still bathing myself and making my way around the house. I’m still breathing. Focus on the positive!

I continue to use the CPAP, but I’m still having difficulty. The nose pillows-with-tape-over-my-mouth routine allows me to move around in my sleep and rest my head on its side, but I wake constantly from the air inflating my cheeks or traveling around my gums. It is the weirdest thing. I will wake up because there is a worm of air crawling its way along the outside of my bottom teeth. It will journey along my gum line in the front of my mouth and find a tiny outlet between my lips to whistle its way out. Or, I will awaken with one cheek suddenly puffed out, ballooned with air. Or, my whole mouth will inflate so I look like a chipmunk ~ with a mask plugging my nose and tape over my mouth, I expect my ears and eyes to bulge out like those squeezy rubber dolls we played with as kids.

Also, the tape is wreaking havoc on the skin around my mouth and the inside of my nose is raw and sore. None of that happens with the full face mask, but I can’t turn on my side without it moving, air escaping and me waking. Unbelievably,  the former situation is the lesser of two evils. Far fewer mask parts to wash, too. The washing of the CPAP parts is a huge ordeal for someone with ME. It is not an easy chore and almost negates the better sleep I am meant to be getting. The dental device that my father recommended costs $600 – $800, which I would spend if I could be guaranteed it would work. For right now, I just don’t have the energy to tackle a new appointment with a new dentist to get a new device.

The last few nights I have awakened in the throes of the full-body flex that I have talked about before. It’s as if there is an arc of electricity going through my body: back arched, toes curled, arms and legs rigid, hands in fists. I have thrown my neck out this way before. I now wonder if a muscle relaxant taken before bed is the answer for this. I’ve taken 1mg of melatonin a few nights this last week and I think it might help a little (or maybe it’s the placebo effect), but not enough. I should have taken my GP up on the offer for Ambien or Traxodone or Flexeril, but I’m such a scaredy-cat. It has to stop, though. I don’t think I’ll improve without pharmaceutical intervention. I’ve been taking tylenol with codeine every day the last few weeks and it’s not very effective at the low doses I like to take ~ plus, it gives me a kind of hangover. On Monday, I start Cymbalta. Duh duh duuuhhhhh….. Please don’t let me chicken out. I need to try something. My doctor said to expect to feel crappy for the first few weeks. But, in theory, it should help with the chronic pain, sleep and anxiety.

I continue my no-dairy-no-gluten-no-eggs-no-most-grains diet. I enjoyed starchy veg and popcorn over the last week, but, starting today, I am removing them from my diet again. I might be removing rice and/or oats, too. I am going to talk to the Good Doctor about that on Monday. After a lecture from my husband about what systemic yeast overgrowth might look/feel like, I am also going to try a little more diligently to cut down on sugar in all forms ~ fruit juice, dried fruit, Theo chocolate bars, agave syrup in my granola, cane sugar in my almond milk etc.

I sit here looking out the window at my husband in the garden, pruning our plum tree. He is tireless. Even when he has no work, he never stops working. He rakes leaves and mows the lawn and scoops poop. He shuttles me to and from appointments, does the shopping, cooks dinner. He washes dishes, hoovers, puts on sheets. In the past few years, he has rewired the house, replumbed the house, put in under-floor heating, cleaned out the rat shit and reinsulated the attic, built a second bathroom, expanded the first, built a shed for a new water heater and installed it himself. He landscaped our whole garden with an expertise that knew what it would look like in years to come ~ if he planted certain shrubs, trees and flowers in certain places at certain times of the year, given time, it would be a masterpiece. He built and tends the vegetable garden, he repaired our chimney and built me a porch with a little heater so I could get some daylight in the winter. He deals with his own physical problems and health issues and never complains. My brother called him a saint. My mother called him a hero. I call him a life saver. Without a shadaw of a doubt, I wouldn’t still be here without him. Gratitude is too small of a word.

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An update for everyone…

I am still feeling stronger than I was a month and a half ago, but still so much worse than two and a half months ago. My energy level is holding steady. I’m able to walk 2,000 – 3,000 steps and have about 12 usable hours each day. I’m able to do house chores, work on the computer, watch TV and read. I’ve walked seven laps of our house the last two days and been able to play a little bit with the dogs. The last time I got hit by stronger pain and fatigue was when I cooked a meal that had me standing in the kitchen for an hour, chopping veg etc. That took its toll.

My pain level has also been steady since the Worst Headache. My muscles ache, my joints are stiff, my neck is always in pain, my head always hurts to some degree, but, in the last two weeks, I have not been immobilised, I’ve not been reduced to tears of helplessness. However, I do keep resorting to Solpadeine (acetaminophen/codeine). Not a lot ~ a quarter to a half of a dose to take the edge off ~ but, I’m aware that the longer chronic pain goes untreated by long-term pharmaceutical therapy (ie: drugs that change brain chemistry, like antidepressants or anticonvulsants), the harder it is to get on top of the problem. So, I have to stop the Solpadeine and start experimenting with long-term solutions.

My sleep is still poor. “Unhygienic”, as the doctors like to say. Sleep hygiene is very important! I have switched to the “nasal pillows” with the CPAP. It’s the mask that shoots straight up your nostrils as opposed to covering your nose or covering your nose AND mouth. It has a much lower profile, fewer parts, more minimal headgear, so it makes sleeping on my side much, much easier. But, if/when you open your mouth, a hollowing wind pours out. The air going up your nose comes straight out your mouth rather than going down your throat. You can feel your uvula flapping and it makes you kind of choke. I keep waiting for a colony of bats to fly out of my mouth… or a high-speed freight train. It’s like Charlize Theron sucking the soul out of those girls in that awful Huntsmen film… Or, even better, the dude in The Green Mile sucking the bad stuff out of me!! Anyway, with the nasal pillows, I have been taping my mouth closed with athletic tape. Yes, it’s true. It worked wonderfully for the first few hours, but, what you don’t know is, when you put tape over your mouth and go to sleep, you DROOL. A lot. Or maybe it’s the humidified water coming through the nose and condensing at the lips… Either way, it wakes you up and, when you pull the tape off, on top of hurting your delicate facial skin, you dribble and your mouth is all wet. Gross. They have chinstraps to keep your mouth closed, but, honestly, I can’t take one more strap around my head. Someone suggested I wear swimming goggles to stop my eyes from being dry and burny in the morning, so imagine this: Zeo headband, mouth guard, swimming goggles, CPAP mask, chinstrap, and tape over my mouth… Really?

Physically, my eyes are swollen and bloodshot (I think it is actually the pressurised air drying my eyes from behind ~ from inside ~ because there is no leak on my mask blowing up into my eyes), inside my nose is raw, ears are plugged and my throat is sore. All from the CPAP. Other than that, I’m having IBS issues again. I think it is because of the iron supplement and also because I have been adding back foods I haven’t had in months. Which brings me to my diet…

I am in the middle of a very long elimination diet. It’s been ten weeks since I eliminated all legumes, grains (except oats), dairy, starchy veg, fatty meat (kinda), eggs and tomatoes. And I’ve been gluten-free for seven months. So far, I have “challenged” myself with dairy, eggs, rice, tomatoes and sweet potatoes. I think rice, tomatoes and sweet potatoes are okay, but I am going to continue to eliminate dairy and eggs. After eating dairy, I became extremely exhausted ~ that indescribable inability to move or speak… So, I am going to re-challenge dairy and eggs down the road. Corn is next to be added in (oh dear lord, I can’t wait for popcorn) and then beans…

I’m back to acupuncture and using the light box, but still haven’t started Lyrica and I’m still waiting on supplements (besides iron and vitamin D and B). After talking to Z, my best friend here in Seattle, my goal is to be able to celebrate a teeny, tiny Thanksgiving. We spend every year at Z and her husband’s house and now they have a new baby. I was going to tell them that I’m not doing holidays this year, but she said, “What if we brought the mountain to Mohammad? We could come to your house and only stay as long as you’re up for it. Maybe an hour, maybe the whole afternoon and early evening…” I’m scared because I know I will want to put a bunch of effort into it ~ cook, clean the house, interact, talk, laugh, play games etc. ~ but, if I can hold myself back and relax and just think of it as a visit as opposed to THANKSGIVING, I should be okay. It made me want to cry that she would want to keep the holiday spark aglow and cart the whole family to our house. Good friends stick by you, even in housebound sickness.

I became sick exactly one year ago this week. I left work exactly six months ago last Friday. I will never stop trying to get better, I will never stop looking for my next career, I will never be okay or content with this new life, but I think maybe I’ve reached acceptance. And, for that, I am grateful. Emotionally, I’m calm. I have a lot of fear, but I’m not depressed, anxious or despairing. This is it. One day at a time.

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What’s gone wrong in your system?

I got the results of my sleep study test yesterday. I spend about 15% of my night in deep and REM sleep and these should be around 20%. Also, I have a form of sleep apnea. There are three different kinds (I can’t remember the names): the most severe kind is when you stop breathing for a full ten seconds or more ~ I don’t have this. The second kind is when your throat relaxes to the point that you are not getting enough air, but it is a partial restriction ~ not full apnea. And the last kind is when this throat closing causes your brain to wake up to rectify the situation. I have the latter two. He said my brain is waking up an average of 49 times an hour. This has me in an aroused, wake state a lot, obviously, and it also causes my sleep cycles to be interrupted, so, even if 15% of my sleep is deep, it’s broken up throughout the night, which isn’t as restorative. So, I get to use a CPAP (Continuous Positive Airway Pressure) machine! Seriously, I’m going to sleep with the Zeo headband, a mouth guard and a face mask? Wtf? That’s a pretty sight. But, please god, let it help me feel marginally better.

He also said, “Have you had your ferritin level checked?” “Yes, two months ago. It’s in your computer.” He looked it up: “Oh, it’s low. You should be on a supplement ~ that’ll help you feel less fatigued.”

Now, let me tell you how much this pisses me off. The crappy chronic fatigue clinic ordered this test along with zinc (which is also low). The results came back two months ago and nobody called to tell me what it meant. My regular GP saw the result of the ferritin, also, and didn’t tell me to do anything about it. Mine is low and I don’t have a period. If I had a period, it would be far lower, the sleep doctor said. So, I could have had TWO MONTHS OF SUPPLEMENTS UNDER MY BELT BY NOW IF SOMEONE HAD JUST REVIEWED THE RESULTS AND CALLED ME. I am raging mad! This has happened at every single step along the way this year. Nobody communicates with the patient. Actually, the front desk people do ~ schedulers etc. ~ they’ve been pretty good. And maybe one or two nurses. But is there a doctor out there that says, “I am testing you for X, Y, Z and, when I get the results, I will call you and explain them. I don’t think you have A, B, C and this is why:…”?? How dare they! I don’t know why the ferritin has me all riled up. It’s just that he put me on a heavy-duty supplement (ferrous gluconate 648mg/day), so obviously I need it and it might make a difference. Actually, the reason I’m so annoyed is this has happened so often and can have more serious consequences. I won’t get into the details, but my husband had a test that the doctor said was negative, but we have access to our results online, so, I looked at the results and googled the test and did the math and said, “uuummm, I think this is positive, not negative.” He emailed the doctor and, sure enough: “Oh, yes, sorry, it is positive. We need to treat you for that.” Say what?! I know they’re only human and I know they’re very busy and I know the whole healthcare system is a mess and maybe the doctors are just as frustrated as we are, but what if we didn’t have access to our records? I never would have found the mistake. And that’s just one of countless mistakes. Please, everyone, be your own best advocates. Call for your test results, request copies of every test you get done, review them yourself and point out anything that looks odd. And, pay attention to any result that is in the low or high range of “normal”! Normal has never been normal for me. My TSH was in the low range of normal for years as two giant goiters grew and strangled my thyroid until it wasn’t working anymore. My ferritin was technically in the “normal” range, but the doctor said it was too low. Et cetera, et cetera, blah blah blah.

Ok, on to other stuff. WordPress shows me what internet searches led people to my blog. Yesterday, 6 out of 14 searches were for MRI info, so it makes me really happy that I expended the energy to write my tips. I hope it helped someone out there.

My wash-out period ended on Tuesday, but I haven’t added anything back in because I felt like such shite, I didn’t think I’d be able to distinguish my disease symptoms from any symptoms new foods caused. Maybe I will add rice today. The Good Doctor says we are looking for “stark sensitivities, so worsening of mood, fatigue, energy, pain.” This is really hard. I was feeling pretty good last week and then, without warning, I was a mess. If I had added rice in that day, would I think rice had caused it?

I’m back to using the light box and I’m starting acupuncture again next week. I’m going to try all the supplements again, as well as melatonin, Lyrica, and the Chinese herbs. I just don’t know in what order… I guess I have to add all the eliminated foods back in before I start anything else to gauge my reactions… This is so tedious and time-consuming. I used to love Thanksgiving and Christmas and now I don’t get to celebrate at all. I can’t eat most of the food, I have no energy to do special preparations and, even if I did, there’s no point in planning something when the activity and/or socialising will just cause me to crash. Wow, this life sucks.

On a lighter note, have I mentioned how grateful I am for my husband? He drives me to my appointments, takes the dogs to the park, fixes our roof, landscapes the garden, hoovers, cooks dinner, sprays IcyHot on my back and, above all, keeps a positive attitude.

Good times gone, and you missed them
What’s gone wrong in your system?
Things they bounce like a Spalding
What’d you think, did you miss your calling?

It’s so free, this kind of feeling
It’s like life, it’s so appealing
When you’ve got so much to say
It’s called gratitude, and that’s right

Good times gone, but you feed it
Hate’s grown strong, you feel you need it
Just one thing, do you know you?
What you think that the world owes you?

What’s gonna set you free?
Look inside and you’ll see:
When you’ve got so much to say
It’s called gratitude, and that’s right

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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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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.