Tag Archives: M.E./C.F.S.

by

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.

20120913-215022.jpg

by

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.

by

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.

by

LDN Day 23… Do I keep going with the LDN?

Like I said, I debated for a while about whether I would be honest in this blog about just how bad it gets. I’m trying to chronicle the good times, the hopeful times, the funny times, as well as the bad times. And I’m still kind of holding back on the bad times because I’m towing the line between diary and public entertainment. I don’t want to depress or scare the readers that know me, but I also don’t want to misrepresent what this illness does to me.

Last night, I skipped all of the supplements after lunch. I skipped food, too. I just went to bed and felt crappy until about 11pm and then tried to sleep. I did take the LDN. I did some more research online and there are so many people saying, “Stick with it! The side effects go away, it gets better.”

My night was awful. I woke up with what I thought for a split second was paralysis in my left leg. Once I rolled over and the tingling started, I realised it was just total and complete bloodlessness. Then I woke up again with absolutely no blood in both my hands. It was the oddest feeling; I could not move the fingers at all. I sat up and shook them for minutes and went back to sleep. I woke up twice from the crippling headache that had struck around 6pm the previous night. I woke up at 1:30am shaking and trembling so much that I got up and checked my blood sugar (it was fine) and then decided to take 1mg of melatonin. This is a big deal for me. I have a fear of combining drugs ~ even “benign” ones like melatonin. I think I’ve only taken 1mg once in the past and it was split into two doses and I wasn’t taking LDN at the time. I like to be able to “monitor” what drugs do to me, so drugs taken at night are the worst. Well, the rest of the night was like something out of “Jacob’s Ladder”. I want to do the overnight sleep study just so someone can tell me what is going on with me in the night. Every time I woke, I was in a different place in the bed, using a different pillow, in a different position, head tweaked a different direction, jaw clamped down painfully. Every time I woke, I was either too cold or burning so hot that I would take my temperature, unable to believe I wasn’t dangerously feverish (never above 99.7 degrees). I had night sweats again. I had nightmarish, vivid dreams. In all of them I was sick and drugged. I kept going into lucid dreaming, where I consciously knew I was asleep and wanted to wake up, but couldn’t ~ I was too drugged, too sick. It doesn’t help that I’m reading those Girl With the Dragon Tattoo books, so all my dreaming imagery is pretty gruesome. I’ll probably have to put those books away for a while ~ until my subconscious isn’t such a lunatic. I have spent 4 months meditating and relaxing ~ my conscious self doesn’t feel that tortured ~ so is this the id rearing its ugly head at night? Freud, you there?

This morning, I’m okay. I feel like I’ve been put through the wars and I’m eating Tylenol for breakfast, but I’m okay. I only got about 4 or 5 hours sleep and tonight I think I might try the melatonin again. It’s either that or stop taking the low-dose naltrexone. Or start taking it during the day. I don’t really want to do the daytime LDN. I feel like, if I’m gonna do it, I should do it when I’m meant to do it for the best result. And, if I stop taking it… well, it’s like the one-armed bandits in Vegas: maybe this time will be the winner. Maybe this day will be the day the good kicks in.

I really will get to the laundry today.

Today’s Moment of Gratitude: NATURE: for the colours, smells, sizes, variations, animals, majesty, resilience, inspiration, and freedom… even gratitude for the bugs –the ones inside me. Little fuckers.

by

Just when I thought I was out… it pulls me back in.

I should be used to the roller coaster by now. But somehow it feels even more cruel that I felt good yesterday and I am in bed today by 6pm, shivering, shaky, chilled, feverish, feeling scared and sick… I can’t live like this, I tell my husband.I let myself start sobbing even though I know it’ll make things worse. I don’t know how other people do it, but I can’t keep going like this. He says, You have to. We’ve had this conversation a hundred times. No, one day I won’t be able to anymore. I can’t keep getting my hopes up and then having them dashed. This isn’t worth it. Nothing is worth this, I say. One foot in front of the other. One day at a time, he says. It will be worth it. It has to be worth it.

Maybe I should scrap everything I’m doing. Start with sleeping pills, then anti-depressants, then pain killers… If this is going to be a lifetime problem, though, how do I commit to a lifetime of pharmaceutical maintenance? I can’t. But I can commit to a lifetime of good eating and relaxation practices, some exercise and laughter. Am I totally naive to think I can conquer this without heavy-duty drugs? Am I totally naive to think I can conquer this at all?