Category Archives: CFS/ME

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Message to the doubters (warning: strong language).

I’m happy to be alive today. I’m happy to not be in a hospital today. I’m happy to have the will to pull myself upright after about 24 hours of being horizontal and get this off my chest.

To anyone who thinks myalgic encephalomyelitis doesn’t exist because the TESTS don’t show anything wrong or some asshole somewhere couldn’t figure out what to call the thing that was happening to histrionic overworked ladies who couldn’t handle the pressures of modern society and decided it should be coined chronic fatigue syndrome, which would for evermore stigmatize the patients…. Fuck you.

Until you have what I have and until you go through what I go through, how dare you pass judgement or think you know better. What I have is killing me. It is ruining all quality of life and taking my family down with it. I’m not tired, I’m not in pain, I’m not depressed… I don’t have the words to describe this disease. I can say, with no emotion and complete clarity of mind, that I don’t want to live like this. That I’d rather die. Does that mean that I’m clinically depressed and suicidal? I don’t think so. It simply means that there might come a time in the future when I have to decide that I am either okay living this new way ~ very little moving, very few activities, very little interaction with people, probably not leaving my house much, probably never having a job that isn’t from home with flexible hours ~ and be happy with it, or decide that I can’t do it.

I was once very full of life. I was once energetic to the point of being annoying. I made my living in a very physical career with a dizzying amount of multitasking, responsibility, and challenge. So, how do I accept my new role? I don’t want to accept it if it means constant pain and management of symptoms. That’s not what I’m here for. I don’t know how to get there.

I have 100 symptoms, you’d laugh if I listed them, but, out of all of them, there is one problem that is very distinct, completely life-altering, and only seems to be talked about in the context of myalgic encephalomyelitis. If I have a “good” day and forget that I am sick and must strictly manage my energy and activity levels, I pay for it the next day with what feels like death. This is so real, so dire, so misunderstood.

Yesterday, as the day progressed, I became more and more incapacitated, immobile, had crushing pain and felt completely unstable. I am not exaggerating when I say my body felt like I had been in a terrible car crash. I was in pain from head to toe. Muscles I didn’t know existed were in pain. Internal muscles were in pain. My diaphragm was in pain, making my breathing heavy. I could barely turn my neck. This isn’t normal pain, though. This is inflamed, swollen, tender, red, throbbing pain. As if every muscle is infected. You touch me and I wince; I move and I groan. There were silent tears running down my face all day. My headache couldn’t be touched by over-the-counter pain meds, I continuously felt dizzy and feverish and faint. I checked my blood sugar and my blood pressure. I told my husband, I don’t know what’s going on, but we may have to go to a hospital this time. I hate hospitals, so that’s saying a lot. Every time I stood up, my heart raced. That’s a scary feeling so I google “tachycardia upon standing” and it comes up with “Postural Orthostatic Tachycardia Syndrome” (POTS) and, lo and behold, it is related to and often found in conjunction with chronic fatigue syndrome.

So the pain is fibromyalgia and the dizzines is low blood pressure and hypovolemia and the fainting is vasovagal syncope and the racing heart is POTS… I have reactive hypoglycemia, low blood pressure, autoimmune angioedema, anaphylaxis that nobody could ever find the cause of, asthma, constant sore throat, temperature problems (understatement of the century), no steel-trap brain anymore, IBS issues, hellish sleep problems and sweats….. AND NOBODY CAN GIVE ME A FUCKING DIAGNOSIS? Just based on the blood pressure/volume drops and the syncope that has landed me in the ER, somebody should be looking at an autonomic nervous system problem. Right?? Who does that? Cardiologist? Neurologist? I don’t even know.

But, you know what they’ll tell me? Eat salt, drink water, stand up slowly. I know because I can’t find a single doctor that wants to get to the root cause. And, honestly, I’m way more concerned that my body won’t allow me to go to the doctor and the dog park or else I’ll spend at least a day or two in crushing, indescribable, terrifying, paralysing pain.

Gratitude? I’m grateful that I’m alive and angry right now. The alternatives are no fun.

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Sometimes I need a revelation.

There are different levels of terrible when it comes to my nights. The best case scenarios are the nights when I just sleep badly, kind of like I have my whole life: I wake up easily, I don’t sleep very many hours, I’m tossy turny…

Then there are the nights that are like those described here: nightmares, pain, what feels like mental torture… Those are godawful, of course, but it’s because my body and my brain are doing horrific things, as opposed to feeling like I am infected with a deadly bug. The infected-by-a-deadly-bug nights ~ the ones I call my “malarial episodes” ~ those are the worst, the most indescribable. Those were the nights I thought might kill me, that went on for 6 months, which I described in my diary excerpt here. They made me feel like I was close to death all night and then clawing my way back to life throughout the day, only to have to do it all over again.

In between those last two, are nights like last night. A mini-malaria. When you add drenching sweats to my night, it changes everything. ANY version of insomnia/cramps/nightmares/thrashing etc. is better than that coupled with the sweats. The night sweats I get are sickly. I’m not just sweating, I am shaking and my head feels swollen with red-hot infection. There is sweat behind my ears and behind my knees and running down my chest and dripping down my back and pooling in the low points of my face. I wake up trembling, cold, and scared. Last night, it didn’t last as long as the earlier days ~ I wasn’t incapacitated by cold bone-chills first and it wasn’t as scary ~ that’s why it gets a category all its own.

But, I had a revelation last night. Here’s what I want you to know about my night sweats: they have absolutely no bearing on how hot or cold the room is, whether I’m wearing clothes or not, and whether I’m covered with a duvet and blankets or just a sheet. I tested those options within the first few months of my sickness. We turned the heater on or left the windows cracked. We bought dust mite covers for the mattresses and pillows and duvet. We bought a new allergy-helping duvet and pillow and sheet, an air purifier, a humidity-checker device, we kicked the dogs off the bed and made sure to lift the blinds and air out the room so condensation and mold couldn’t grow ~ but not before 10am, so external allergens wouldn’t be at their highest levels. Blah blah blah.

The important fact was that I had never, ever in my life experienced night sweats until that night that I had gotten sick while writing Christmas cards. I got a very high fever in my teens ~ my mother could tell you if I was drenched in sweat, but I don’t remember it. As a child I remember sleeping on some hay (don’t know where I was), but I always remembered that night because I woke up hotter than I’d ever felt in my life. I was worried that the hay might start to smolder. That was the hottest I had felt while sleeping until this year. And I always joked that I don’t sweat. “I can sit in a sauna and not sweat”, I’d say, so this was a very abnormal thing to happen and it came on very suddenly.

Over the months, I had theories about the sweats and I was positive I was right every time. The doctors ruled out cancer and peri-menopause and all the typically things that cause unexplained sweats. At first I thought I was having a reaction to fatty and/or spicy food. I had one of the worst malarial-type episodes after eating a habenero enchilada and another time after eating fried chicken and macaroni and cheese and another time after a Christmas party at a steak house. I was sure I was right. I stopped eating dairy, gluten, high-fat foods. I wasn’t right. Then I was positive it was the birth control pill. I had been on it continuously for a year and it was Yaz ~ a pill that has had some pretty serious side effects with people (as an aside, my body felt great on it). So, I quit taking the pill for two months and nothing changed. However, when I took my opiate painkiller during my period, my sweats were much worse, so I decided they were caused by the painkiller. I went back on the birth control pill and stopped taking the painkiller. I was wrong. The sweats didn’t stop and I’ve been in pain ever since. Then I 100% believed it was my bowels. I knew, with no doubt, that the sweats happened when I was having bowel pressure of some kind in the night. But, through the last month of IBS awfulness from the new diet and supplements, I had no night sweats. And there was quite a bit of constipation pressure, let me tell you. So, I thought it must be anxiety. I must be having panic attacks in the night. The sweats stopped for the most part when I left work, so I thought this proved it. They came back for a few days when my best friend was coming to visit from Ireland, so I thought that doubly-proved it. However, there have been key times when it didn’t happen ~ when I was a big ball of fear and worry and I didn’t have the sweats. And there have been times when I’m feeling pretty good and positive and they did happen.

Which brings me to last night and my revelation. I’m not sure why it took me this long to see it. The sweats happen when I overexert myself. Evil, evil M.E. I left the house at noon yesterday and I didn’t get back until 6pm, which never happens ~ I’m usually far too careful. And I threw the ball for my dog at the park and I was thinking, “watch out with this activity, girl”, but I wanted to push myself a little and see what would happen. Today, my throwing arm is killing me and my back and my neck… it all hurts and aches. My headache will. not. go. away. But the sweats came, too. And I just realised I didn’t meditate yesterday. I don’t think I have missed meditation more than once or twice in 4 months.

So, not only does overdoing it cause the extreme muscle pain and aches the next day and make me couched, but it causes the sweats? I have to look back through my notes and see if this theory holds up. It is understandable that the sweats didn’t stop until after I left my job because my job was the overexertion. Then, I got a handle on what I could do or not do and the sweats subsided. So, I guess, I just can’t push myself? Then how do I know my limits? How do I get better? This morning, it hurts to move my eyes. Literally. It feels like I strained the muscles that hold my eyeballs and, when I chew, it is painful in my temples. Oh, and my chest is tight this morning and it hasn’t been in weeks. I just said to my husband yesterday: the only good change is no tight chest this month.

My sports medicine doctor, with whom I met to discuss my muscles, wants me to try Lyrica and Ambien. I don’t know anymore. I just don’t know.

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Remember to notice the good times.

I would like to mention some good times so nobody thinks the sadness sticks around all the time. Today, I managed to briefly meet friends and go to a very long doctor appointment and still had energy for the dog park. It was sunny and warm and there weren’t very many people there. Once again, I found myself smiling while walking –maybe even strutting— and listening to my music. There’s something liberating about walking in a tank top with the sun shining, a breeze blowing and not being at all cold. At least it’s liberating for someone who spends their life in close contact with either a hot water bottle, hot tub, electric blanket or electric vest (which is made for motorcycle riders, but is wondrous for freezing freaks like I). Speaking of, there was this one day years ago when my husband and I were riding our motorbikes on a hot day through the mountains. I took off my leather jacket and, for the first and only time in my life, I dared to drive fast on the country highway wearing only a tank top (and leather pants and a helmet, duh), with the wind racing over me and the sun beating down on me… My god, I will never forget that feeling. Oddly, today, smiling and strutting slowly in the park, it felt a little bit like that day on the motorbike: a lot slower and safer, but still the freedom, peace, and sun in a tank top.

I thought, “the sun feels like it is physically penetrating my neck and taking away the pain”, so I went with it: I imagined that it truly could. I concentrated on that warmth and willed it to fix me. I pretended it was a known procedure with proven results and I let the sun rays massage my muscle rotten spots (they feel like they must look like rotten spots on an apple) and decided that tomorrow I was going to start winning. I am exhausted, I have a crushing headache as per-usual, and I’m currently going through a fever phase, but, I swear, this illness won’t win. I won’t feel terrible tomorrow and it doesn’t get to make me depressed. I’ll be sad when I feel like crap, I’ll still undoubtedly have a roller coaster of emotions and my commitment will falter, but, I got this. The sun gave it to me.

I am grateful for the sun.
Little darling, it’s going to be a long cold lonely winter.

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LDN Day 26… Kind of want to quit.

I don’t know what to do. It’s almost been a month on low-dose naltrexone. I don’t feel good. I don’t even feel better. I think it might be making me depressed, but it’s hard to tell because just the sheer length of this illness with no answers is enough to make anyone depressed. I have a headache EVERY SINGLE DAY. I wince when the dogs bark, when there’s a loud tv show, when my husband is putting dishes away… everything hurts my head. But that isn’t really out of the norm ~ just more than usual. Is the LDN causing the sleep disorder, depression and headache? How do I know? I kind of want to quit taking the birth control pill (the idea fills me with terror) and the LDN. Then… what? Go down the benzodiazepine and opiate rabbit hole? That scares me more than anything.

I’ve had 6 crappy hours sleep each of the last 3 nights. My muscles hurt so badly. My temperature is a roller coaster ~ 97.2 to 99.7 degrees and back again within an hour. I think I’ll get my thyroid levels checked today just in case, although, they are always fine. I’m meeting my old bosses today and I have no idea what I’m going to say. I guess I just want to know if I’d ever be welcome back in a different position if I kicked this… What if I can never work again? My god, I can barely think about it. Maybe what I should be doing is planning a new career that allows me to work from home. I can work when I can work. Laura Hillenbrand did it. Maybe I should just start writing a book and hope it makes money. Ha.

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LDN Day 24… 9/11

Today was a good and bad day. Bad in that I feel like I am premenstrual even though I don’t get periods. I’ve been very emotional, everything is making me cry and I want to eat nothing but sugar. On the good side, I had lunch with friends, which was sorely needed — I was starting to feel like I was useless in this world. What’s my special purpose?!

I also went for a half hour walk in the cemetery with my first-born son (dog) and it was so peaceful and also sorely needed — every time I cry, even if it’s just a sniffle, he has to wrap his 110lb body around me and nose my face to try to protect me and cheer me up. He needed some calm Momma time.

Then I did three mini-meditations: one while I was using my physical therapy neck-stretcher thing, a traditional sitting meditation, and standing breathwork with stretches. Any stretching that doesn’t pull a muscle is an accomplishment.

The best part is that, after a long talkative lunch and a walk, I feel okay. I only got 6.5 fretful hours sleep last night and I haven’t had a nap today, so I am ecstatic that I’m not completely slurry and jellied on the couch or feeling fluish in bed. Hallelujah. I did just take a tylenol, so that could be helping. Maybe my muscles won’t be diseased tomorrow… Maybe I’ll be mobile and not in too much pain… Maybe.

I am going to take a melatonin tonight (which I didn’t last night). My doctor even confirmed via email that there was no problem taking both LDN and melatonin before bed.

Finally, I’m grateful for the good healthcare workers and emergency responders. Thank you to the dedicated, caring, patient, thorough, communicative, available, informed, and informative NDs, MDs, RNs, DDSs, PAs, PTs, MTs, LMFTs, RDs, and acupuncturists (whatever letters they have after their names!). Thank you to the EMTs and firefighters that have saved my life on the multiple occasions when we have dialed 911 or 999… And those, along with the police and average citizens, that saved–or tried to save–all the injured and dying people on this day 11 years ago.