I have an appointment with my GP tomorrow. It’s at 9:30am, which is about 2 hours earlier than I usually schedule appointments so that I am a functioning human being. I don’t even know if it’s worth it to see her. I basically made the appointment because I haven’t seen her in 6.5 months. I am a different person now. Last time I saw her, I still didn’t quite understand how the medical system works. I still sort of thought that doctors would search and help and communicate and dig until they figured out what was wrong with a patient. I still didn’t realise how specialists operate. Even after the first infectious disease doctor said, “You don’t have an active infection” and then, in no uncertain terms, gave me a permanent goodbye. Even after the second infectious disease doctor said, “You have chronic fatigue syndrome and, from here on out, you should work on treating the symptoms.” In other words, See ya! Even when the chronic fatigue expert spent ten minutes with me after I waited 8 months for an appointment and sent me on my way with directions to exercise read a book about pain, and try Cymbalta. It wasn’t until my second visit to the rheumatologist, that it finally clicked. He had treated me so well at my first appointment. I will never forget he said, “There is something wrong with you. It is not your job to figure it out, it’s ours.” It felt validating and I almost wept. Someone would finally take the burden of this search off my shoulders and figure out why I felt like I’m dying… But that’s not the way it works. When I went to see him again a year later, the first thing he said was, “Why are you here? Chronic fatigue syndrome is an infectious disease.” Ah. Click. Finally I see. Dr. House is only on a tv show, stupid! Specialists spend 15 minutes max listening to your story, run the standard tests, and you’re done. If the tests are negative, you will never hear from them again. And, even if the tests are positive ~ like the time they found two toxic goiters on my thyroid and had to kill the whole lot with radioiodine and I had to figure out from a pamphlet and a bunch of inquiries that were shuffled from one person to another how to get my synthetic hormones and whether I should have follow-up visits with someone ~ sometimes you won’t hear from them then, either.
I had a yearly check-up with my GP 9 days before I was hit by ME. I distinctly remember saying to her that day, “My biggest problem is my neck” ~ meaning the degenerative disc problems in my cervical spine that have plagued me since my early 30s. We talked a lot about my job. I was having difficulty sitting at a desk all day after years of being on my feet. She thought, because of the stress involved, that it might not be the job for me. I remember her saying exactly that: “Are you sure this is the right job for you?” I shrugged and thought, Maybe not. But I still love it. In some ways, I think that sentiment has coloured the treatment I received once I came down with ME. I think a lot of us (my doctor, my boss, my family, and I) thought my problem was caused by job-related stress and lack of sleep.
That is another way I am a different person now than when I saw her 6+ months ago. Now, my awareness of my body and physical sensations are extremely fine-tuned. It is laughable to me (and tragically sad) that, in my confusion during that first year, I was almost persuaded that my sickness could have been caused by 1) bowel problems, 2) vasovagal reactions, 3) stress and anxiety, 4) my pain killers, 5) my birth control pills. When you are scared and in foreign territory, you want to latch on to ANY explanation that is said in a rational way from an expert authority. I suddenly understand how false confessions are coerced out of murder suspects. Maybe you’re right, Dr. E, maybe it’s just IBS. Phew! Even though I had had my share of health problems in my life, I was completely naive about how this medical journey would unfold itself. It is tragically sad and not so laughable that I didn’t trust myself 100%. I was SO SICK. My bowels? Stress? No, not this. Sleeping normally, then swimming in sweat. Running a little cold, then incapacitated by bone-wracking chills. Steady, then dizzy. Confident, then fearful. Strong, then shaky, then weak. Memory like a steel trap, then uncertainty about all details. Aches in my neck, then deep body-wide pain. Occasional headache, then 24-hours-a-day migraine for months. Able to bound up and down stairs, then legs not working. Energy, then none. Working, then housebound. Well… then sick. Don’t doubt yourselves, ever.
So, why am I even going back to my GP? I want to talk about my application for disability. She has known me for years and she should know that, even though I mostly saw her when I had chest infections, I have always been an upbeat, energetic person and ME caused an abrupt and permanent change. I must stay unemotional. The day last year that a few tears dropped in her office sealed my fate as someone that needed therapy and an antidepressant. My chart note says “Stress reaction, emotional.” I did what she said and started seeing a therapist, but 15 months of weekly visits later and nothing has changed. Nothing except I’ve spent 50 minutes each week crying about how I don’t know how to accept this new life and I don’t know how to stay hopeful and calm when my symptoms flare. Which is always.
I’ve cried more in the last year than I have in the 39 years before. I get overwhelmed sometimes with the surety that my husband will reach a breaking point and leave me. Or that I will somehow have to find the strength to leave him so he can have a life and I can be freed from the unrelenting guilt that I carry. The other night, my husband said, “I’m not going anywhere. I love you deeply.” I sobbed: “But you didn’t fall in love with this.” I spat out the word “this”. I said it with a grimace of distaste, as if I were talking about a maggot-infested, rabid rat that was sitting on my chest. And I actually flinched at the knowledge that the revulsion was about myself. I try to stop my brain from doing this. I try to remind myself that I still have value, even sick. But it’s hard now that I have very little interaction with the outside world. I can tell myself a thousand times that I am not the disease and my self is not sick ~ my core is still the same ~ but I don’t really believe it. I sure feel sick at the core. Or, at least, that there are many, many layers of sick surrounding that central self, which is still the me I know and love. But, if those layers rule the body, who really cares what’s in the center? If it can’t express itself or figure out a way to thrive, what’s the point? How do I enrich the world when I rarely laugh, can’t talk for more than an hour each day, have nothing interesting to say…? And how oh how do I find joy in my own life when everything I enjoy takes energy that I simply don’t have? I have to find joyful activities that can be done lying down with my eyes closed, day after day?
Anyway, my husband pointed to my heart and said, “I fell in love with what’s in there and that hasn’t changed.”
I thought, Yeah, it has. But, I admit, I felt another renewed resolve to fight. If not for myself, then for my husband and the person with whom he fell in love.
Tragically that is what we go through with out medical system. I went through the same…. and my husband did leave me..and it was heartbreaking. Having a good support system is so important.
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Oh, Stacie, my heart breaks that your marriage didn’t last. I truly hope you have a good support system with friends and family. And online, too! We support each other. 🙂
Oh my gosh, that process of realization about how the medical system works… Mine was exactly the same. I guess it probably is for a lot of people.
I’m glad you have a spouse who is invested in you. I know how hard it is, and the horrible guilt of knowing how much extra strain they’re under and how little you seem like yourself. I’m getting better. I’m slowly getting some of the parts of my brain back, but I know that I’m not who I used to be…yet.
Thinking of you. Hang in there. I wish you a smooth appointment with your GP.
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I read “I’m getting better” over and over. I love that you wrote that. That’s a big deal! You are an inspiration and you’ve taught me a lot about coping. I keep thinking, “I’m getting worse” and I know that contributes to the downward spiral. I have to change it. I’m getting better, too. Maybe not, but that’s what I’m saying from now on. 🙂
Thinking of you, too.
I really am getting much better since I learned to ease up. It’s not even a tough-to-tell kind of situation. You can see the changes clearly from month to month. I just wish it was a little faster, and that I hadn’t gotten so abysmally low in the first place. It is a LONG journey back up.
You can probably guess by now 😉 but my advice is if you’re getting worse, do less. If you’re getting better, what you’re doing might be okay. Doesn’t matter how much or how little your current level of activity is – it seems much more important how you feel overall at that level, whatever it may be. I really can’t say enough how much that turned things around for me. I still have my set-backs and crashes, but the overall trend is distinctly good. I’m working now on minimizing the crashes and over-exertions even more so that hopefully the rate of recovery will improve. I’ve been advised by my specialists that if it feels like you’re on a roller coaster, you’re still doing far too much. Should be steady and stable – whatever level of activity that is for a particular person is what we’re supposed to be aiming for.
Because there is so much day-to-day variation in this stuff, I’d try to take a look at what you could or couldn’t do a few months ago (probably on an average or “good” day – crashes are crap no matter what), and compare it to what you can or can’t do now. Are there new things you can do without thinking about it now? If so, try to resist the temptation to increase your activity level just because you feel like you can/should – it’s just a signal that where you are is just right, not that you should be doing more. Eventually you’ll be able to do more without even noticing you’re doing it – it happens naturally, and doesn’t need to be forced as much as we tend to feel like it does. Are there things you used to be able to do without noticing that now you have to ration? Then maybe cut back some – you don’t have to find the perfect level right away, just keep stepping in the right direction until you’re there.
It is CRAZY hard to keep up hope when you’re getting worse. The road up is WAY easier than the way down. I hope that road finds you soon, in a strong enough way that you don’t have to wonder. Thinking of you often!
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So glad you have such a wonderful husband and family for support.I had the same feeling with my husband, thinking I should just leave him, he deserves someone else healthy..etc.. It does take a toll on a marriage, but you can survive it! Mine didn’t, but not just because I was sick. I was also infertile..and I also had a lot of dysfunctional and really crazy family drama that had already taken a huge toll on our relationship. Then he got mean, and started treating me badly, so even though he left me and it broke my heart.. my marriage ending actually ended up being for the best. Now I have a best guy friend that I never would have met before, who’se wife died from cancer and he’s SO good to me. We are just friends, but he’s my rock, and I love him for being there for me.
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Bear with me, I have so much to reply to you and I am so grateful for your comments, but I’m not doing well… Hope you are!
Well considering I just realized how to read these responses, I’m really slow, but it’s fun now to log on and see I have so many replies. I have too much to tell, I’ll have to post a new blog soon.
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