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May Update

Let’s see, what’s been going on in my life? Well, April was the best month I have had in about six months. I have been walking 1000 to 1500 steps a day instead of the 500 average in December. I have been out of bed for about 9 hours a day instead of the 5 that it was for so long. I’m still housebound, but I’ve been in the garden and tried driving myself to nearby appointments. Best of all, I’ve been upbeat. Just like that… I get some space from the crippling symptoms and my mood brightens and the future seems oh so hopeful.

I’ve been on Prednisone for three weeks now (my feeling better started about two or three weeks before, so I can’t credit Prednisone). As much as I don’t want to be on it, every doctor I see has encouraged me to give it a try for diagnostic purposes. It’s only 5mg, but it was still rough in the beginning. I wasn’t sleeping well and I was grouchy and hungry. Those side effects seem to have abated, but I have others that continue: more facial hair growth (which would be great if it were my eyebrows and eyelashes) (but it’s not), swollen, hot hands and feet and constipation. The latter is the biggest problem. I feel like my bowel is inflamed, swollen and stagnant, which is the opposite of what I would think steroids would do. On the plus side, my skin is much, much better (although I was warned about the Prednisone-withdrawal acne flares by my dermatologist) and my joints seem to be bothering me less in the night (specifically, my shoulders and hips. They still crack and pop constantly, but they’re not as sore).

I saw my first naturopath. Some of you, I’m sure, will roll your eyes and some of you will wonder WTF took me so long! I am in the best place possible to visit excellent NDs because Bastyr University is right up the road, but I’ve held out because my faith has always sat solidly with allopathic doctors and western medicine. But, now, I’ve lost all faith. I told her that, too. I told her I am conflicted: On the one hand, I applied, got in and intended to attend Bastyr. I have researched it and I know the training they give and the scope of treatments NDs employ… And, on the other hand, for reasons I cannot quite understand, I want some big machine to find the problem inside me and some specialist to prescribe a drug that will make it all better and I can go on living. I know better! I know that what happened to me was the perfect storm of genetics, upbringing, lifestyle choices, viral exposure, toxin burden, detox pathway blockage, immune system malfunction, nervous system blitz etc. I know that I need full-body, whole-life help, so I’m not sure why it took me 40 healthcare practitioners to finally see an ND.

Well, let me tell you, I left in tears of gratitude. I needed someone to replace the Good Doctor and now I have the Better Doctor. She spent 3 hours with me. What?! Who does that? She took my history from womb to present. She addressed everything. She had ideas to support my system from all angles: endocrine, digestion, liver, adrenals, nutrients, lymph, circulation and on and on. She said, “Email me any time and, if you are scared or freaking out about a symptom or side effect, call me.” Who does that? She said she wanted to come with me to my endocrinology follow-up to hear what the doctor had to say from the horse’s mouth. No cost. Who does THAT?!

She wants me to try some things that I would normally scoff at, such as castor oil over my liver and high-dose vitamin C, but, what I keep reminding myself is: a multi-vitamin gave you the worst side effects you’ve ever experienced . Your weird pressure-point-restore-circulation physical therapy is the only thing that has helped. So, I’m open to anything. She wants me to come in every week for hydrotherapy. I’m not sure what this involves yet. I’ll let you know.

The clinic gave me a huge discount on the visit and supplements because I have no income and it’s located about 5 minutes from my house, which means I can drive myself on good days. All in all, I’m excited. But, I have a history of being excited by first appointments and disappointed in the long run, so it’s a cautious optimism.

I finally managed to apply for disability. My “rehab counselor” (aka shrink) gave me the name of a lawyer and that’s all I needed because I couldn’t manage to get going on my own. I never spoke to the lawyer, only her assistant who told me what info they needed. I spent a few weeks creating a spreadsheet of all the doctors I have seen, clinic addresses, tests ordered, drugs prescribed and, when the phone appointment happened, she didn’t need anything else (thank god because talking is still so difficult). The hardest part was I got a letter from the lawyer saying they will submit the info, it will take 6 to 8 months for a decision. It will probably be denied and they will file an appeal and if I don’t hear from them for a year or two, don’t be alarmed. I knew this was the case, but it was demoralizing to see it in print. If I had managed to apply or find a lawyer when I left work two years ago (how the hell has it been two years?!? LIFE IS SLIPPING BY!), I’d already be at the appeal court date by now.

That’s about it for now. I’m very busy this month: a teeth cleaning, a new dentist for a new oral appliance for sleep apnea (and it all starts over from the beginning) and follow-ups with my GP, rheumatologist, nutritionist and dermatologist, plus the hydrotherapy and mental therapy appointments… Exhausting.

It’s chilly again here and one of my dogs broke his toe chasing squirrels, so we’re all stuck back in the house being lumps on logs. I did manage to make it to the cemetery on my mobility scooter on that last hot day (thank you, husband, for making that happen). It was glorious.

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Caregiver, caregiver, give me some care, take me somewhere, help wash my hair!*

*Sing to the tune of Matchmaker. Yes, this is how I pass the time. I have multiple verses. 😉

This is day 8 of my husband’s cold. You might remember how paranoid I am of catching a cold or, god forbid, the flu. It has been exactly 2 years and 4 months since I had a cold and bronchitis (colds never stayed in my head ~ they always went to my chest) and I find myself grateful and, also, sad, knowing that a few months after that last cold my immune system turned on permanently. I read about other people with ME/CFS suffering with viruses and I knock on wood, cross my fingers, spit over my shoulder, pull on my earlobes and say toba toba to protect myself (yes, really. That’s not excessive, is it?)… But I also feel a stab of jealousy because that probably means their immune systems are healthier than mine ~ that they have calmed down enough to allow a virus to infiltrate the fortress.

That’s not to say I want to get sick. I don’t even want to test it. When my husband gets too close, I shoo him away. When I have to walk past him, I pull my shirt up over my nose. It’s comical, as if he horribly reeks. And I am an utter nag:

“Can you PLEASE cover your mouth when you cough?”
“Have you washed your hands?”
“Please don’t breathe near me. Just stop breathing.”

At least I say please.

He hasn’t taken a day off of work and, even on the weekend, he was in the garden, raking leaves and doing winter clean-up. I find myself fretting about him – not wanting him to push himself when he’s sick. This has probably been the most stressful year of his life because of my illness, plus he has had more landscaping work than many recent years and his job is all physical labour, out in the elements. I know I can’t implore him to spend a day on the couch, sipping Lemsip and chicken soup. It’s not in his nature. I’ve never seen him have a day like that. On Sunday, as he was in and out of the house doing chores, I said, “I really wish you’d rest.” He said, “This is resting.”

My husband could never get ME, though. That’s not in his nature, either. He sleeps well, never takes even a painkiller, he can eat and drink anything, can handle extreme weather… I’ve always had the sensitive system ~ I would love to have skiied in the winter, but hated the thought of cold and snow. I would have loved to lie on a beach all day in the summer, but have always wilted in the sun or become faint and headachy.

I’m convinced the main difference between us, though, is that he doesn’t care – in a good way. He isn’t a perfectionist, he doesn’t worry, he doesn’t feel guilty. I’ve always been an over-achiever. I want to do everything and I want to be the best at all of it. I’m turned into knots because there are tumbleweeds of dog hair all over the house and I haven’t sent thank you cards for the birthday gifts I received 6 months ago. I am guilty about my dog’s anxiety and sad that I don’t feel attractive anymore. I beat myself up about the sugar I can’t seem to kick and the money wasted on supplements that I couldn’t tolerate. I worry that I’m a bad friend and I’ll be forgotten and I haven’t made my mark on the world yet. My husband is happy to never socialise and doesn’t think twice about what people think of him and seems to always be perfectly content (not counting the last few years).

Yesterday, after he had worked, gone grocery shopping, gone to the pet store, picked up my prescriptions and cleaned the kitchen, I tentatively reminded him that the dogs need baths and my bedding needs to be washed and I’d really love help making my granola and detox soup (more on that later) and… if it is at all possible… we really need to hoover sometime…. I whispered this last one as I slunk out of the room and around the corner, out of eyesight (notice I still say “we” because I can’t bring myself to say, “You need to clean the house.”)

All this on top of his cold. Caregiving sucks. But I am lucky and very thankful to have one of the best caregivers and husbands out there.

Caretaker, caretaker, take care of me, stay by my side, help fight M.E.!