murielle

Prompt 2: If it’s any consolation

25-06-28

(AN: My entry this week is inspired by Roina_Arwen’s question to me regarding one aspect of my entry last week. Thankk you, Roina!

“If you don’t mind me asking—and you don’t have to answer if you’d rather not—but I’m curious how a medication could put you back decades in your recovery?

I’m sorry to hear that you have to deal with this. *gentle hugs*”)

“If it’s any consolation it only lasts two years.” Although, I never had a medical professional say this to me in all my years living with ME/CFS, et al., there were enough lay people who said it to me to make it memorable. At first, it gave me some hope, but as the years wore on, and at best there was no change in my health, I learned to let it go in one ear and out the other. Oh, I’d smile and say thank you, or some such thing to let them know I appreciated their concern and kindness, but from time to time I’d tell them how long I’d been ill. That usually ended the conversation.

To give you a little perspective, I turned seventy in February this year and I’ve been diagnosed since I was thirty-eight. Before I was diagnosed I was ill for about eight or nine years. Though, I strongly suspect I had ME/CFS, et al., since childhood.

A brief history: Myalgic Encephalomyelitis has been on the WHO list of series illness (as serious as heart disease according to them) since the year I was born, 1955. In the sixties along came a psychiatrist in the UK who decided there’s money in “dat there disease” and declared it was a psychosomatic condition and should be treated as such. (I’m a little biased, here.) He and his cohorts successfully co-opted Myalgic Encephalomyelitis and since then those of us who have it have not only had to battle the ignorant masses, but also certain un/illinformed medical professionals. He has since (after his death) been debunked, but sadly too late for many people who suffered horribly because of his assertions. Insurance companies loved him. Probably still do.

In the mid 1980’s the CDC also added Myalgic Encephalomyelitis to their roster, and some bright boy decided to rebrand it, Chronic Fatigue Syndrome. Later, when those suffering from the disease demanded he explain himself, he said, “I was only kidding.” Some joke. That moniker is so prejucical. Think of all the chronics in our world: chronic complainers, chronic drinkers, chronic liars, chronic...well, you get the idea. Fatigue? Oh that’s a good one, too. Most people respond with, well, I get tired too, so I must have it. And the coup de grace? Syndrome. Well, isn’t that just loaded with positive conotations?

Okay, back to me.

It took eight or nine years to get a diagnoses. Meantime, my GP, determined that I was just a middle-aged single (read miserable) woman suffering from depression even though I explained repeatedly I wasn’t depressed I just had no energy, put me on Prozac. Except, it made me suicidal. For two years he kept me on that medication all the time pretending he was trying me on something new. He was a huge man, with hands the size of (sorry cliché) dinner plates. He’d go off to his office and come back into the examination room with a huge number of pills, taken out of their packaging, loose in just their foil wrappers. “Try these. They’ll help.” I’d return when they were finished with the same reactions. Weight gain, heightened depression, they’re not working. And we’d go through the charade again. I finally discovered what he’d done when I got hold of my medical transcripts. Two years, listed over and over, Prozac. My first (?) atypical, but not unheard of or undocumented, reaction to a medication, to that medication.

I proably already had Multiple Chemical Sensitivity, but was undiagnosed.

In the mid 1990’s I began seeing a specialist. My second specialist actually, but she knew her stuff because she also had all the conditions. She ran a huge battery of tests and diagnosed me with all three conditions: ME/CFS, Fibromyaltia, and Multiple Chemical Sensitivity. She refered me to two other specialists. (All three are retired now.) And so began several decades of tyring this or that medication to see if it improved any of the symptoms, had any effect at all, or made things worse. Very rarely did I get positive results and when I did I couldn’t afford said treatment.

Over the course of my illness I saw four specialists. At one time or another, each of them told me I was among their sickest patients. As much as I appreciated their concern, I didn’t believe them. I believe that much like Autism, ME/CFS is on a spectrum. There are those who are mildly affected, who don’t have as much energy as they used to, who have to limit their activities until they are able to resent and recuperate. And on the other extreme are those who are confined to lie in a dark room, clad only in diapers, hooked up to IVs for fluids and nutrition, who cannot tolerate noise of any kind, including voices above a whisper, and fragrances, or chemicals.of any kind. I cannot imagine the extent of the pain, grief and loss they and their loved ones suffer. While I have had periods (sometimes fairly long stretches) when I am bed bound, and while I am largely home bound now I am still able to be pretty independent and self-determining. It just takes me longer to get anything done.

Medication is a challenge for all of us with these conditions, but for those of us with MCS, it’s more so. We just never know how we’re going to react to anything, new, or even something we’ve been taking for a while. For instance, for two years I had the worst diarreah. I couldn’t leave my home because I never knew when it was going to hit, for how long, or how much warning I’d get. I tried everything I could think of, asked questions, worried and even wept over it. One day as happens from time to time I ran out of one of my suplements and had no way to get any for serveral days. The diarreah stopped. Just like that. I had developed a sensitivity to magnesium. I didn’t get or take any for a few months and the diareah stayed away. Over time, I was able to reintroduce my body to it, slowly. And while I still don’t take the dosage my doctor had oringinally put me on, I can now take enough to help me, and not harm me.

At one time I was on three different sleep medications at the same time: one to put me to sleep, one to keep me asleep, and one to relax me enough to that the first medication could actually work and put me to sleep. This treatment, while fairly common, didn’t really do much for me. I ended up developing Pica. Not to the point that I was eating dirt, but I was eating in my sleep, which was terrifying.

And while I’ve been on pain maintenance for decades sometimes it’s just so bad I need something stronger. My doctor prescribed straight codeine for me to take as needed, taking it combined with anything else makes me very ill. Knowing how sensitive I am she prsecribed the lowest doze she could, 15 milligrams. It was too much. So, I cut the tiny pills in half. Still too much. I cut the halves in half. The quarter doze, 3.75mgs, only knocks me out for two or three days. So when the pain gets so bad I need to take the “big guns” I have to carefully weigh the cost. Pain over losing up to three whole days of my life? “Sometimes Si, sometimes no.”

There is no way to know to which medication I will react negatively, or will have any affect at all. It’s a crap shoot--more like Russian Roulette.

And so, last Fall, my doctor (whom I adore, she’s great) decided after a couple of years of nagging—wait! Doctors don’t nag, they advise—advising me to take blood pressure medication I agreed to try it. She again, put me on the lowest doze and instructed the Pharmacy to half the pills before sending them out to me. I started taking it, not right away, but when I knew I’d have some buffer time if I didn’t react well.

I honestly didn’t know what had hit me. I went from being able to be up and doing this and that to being completely bedridden. Unable to get up except to go to the bathroom once or twice a day. I don’t remember bathing or eating. I was back to the dark ages before I made any progress at all. And at first I was too ill to figure it out, but then when I could, I started to go through everything asking what had changed in the past weeks. The only thing was the medication. I ate the same things, I wore the same things, I did the same things.

I live a very limited life. Very controlled. Well, to the best of my ability.

It took twenty-five years from my diagnoses to get to the point where I could do a small laundry every week, go grocery shopping, and do some light housework. This may not seem like much, but it was enormous to me. It was tremendous progress and I felt I was finally on the road to recovery. And then I moved.

I moved from my third-floor walk-up apartment that I’d lived in for twenty-eight and a half years down to the first (ground) floor for my health. So I would not have to climb all those stairs every time I went out, even just to take my garbage out.

Bad move.

Do not pass go, return to zero and start over.

Okay. Been there, done that. Now, I was fifty-five. And starting from scratch again. But, at least I knew what to do and what to avoid. So, better, yes.

So, here I am now. My days consist of getting up, making breakfast, having to go back to bed and sleep for two or three hours, get up, try to do some chores, go back to bed sleep for another two or three hours, etc., etc., etc.

Everything gets weighed against the cost. If I do my dishes before I go back to bed, will I be able to do anything else? If I push and do the dishes and dust, when will I be able to vacuum, or write for Idol, or take a phone call from a friend? Pushing really isn’t an option, but sometimes I just have to, like Friday. I spent the day prepping food for Sabbath and the week ahead because I knew I could rest Saturday. That’s my life right now. That’s where I am. I’m trying to rebuild myself again so that I can move forward feel better, do more.

There’s a verse in the Bible about counting the cost, (it’s a bit out of context, but you get the point) boy does my experience with ME/CFS et al., drive that home to me.

Luke 14:28-30:

• Jesus asks, "For which of you, intending to build a tower, does not first sit down and count the cost, whether he has enough to finish it? Lest after he has laid the foundation, and is not able to finish, all who see it begin to mock him, saying, 'This man began to build and was not able to finish'".