After dealing with thyroid disease for almost 9 years, I finally, for the first time, can definitively identify the symptoms that are coming from being hyperthyroid. When they found the goiters on my thyroid and diagnosed me with Graves Disease, I didn’t know my very overactive thyroid was doing anything to my body. Unlike these stories you hear (like Dr. Amy Myers‘s), I was not telling an unbelieving doctor that there was something wrong with me. Quite the opposite. I had multiple doctors see my test results and look at me, perplexed: “You haven’t been shaking, anxious, losing weight? Have you been losing hair or had temperature problems?” Nope, nope, nope. I had been hyperthyroid for so long that I just thought of myself as someone who had thin hair and could eat a lot. Everything else I chalked up to my high-stress job: I was “type A”, I didn’t sleep well because I had a lot on my mind. I wasn’t anxious, I was BUSY. Give me the radioactive iodine already and let me get back to work!
A few weeks ago, I started getting very stressed out about my upcoming trip to California. So much to plan, rentals to find, plane tickets to buy, packing lists to make, food to prepare and freeze, prescriptions to fill. And for the doctor I’ll be seeing, I have to write my history, years of tests to sort, scan and email, release of records forms to ten different clinics… Of course I was feeling overwhelmed–especially with finding places to stay since every day that I didn’t make a decision, more options would disappear. My sleep had (has) gone to hell, I’m waking up with a sore jaw from grinding and my teeth feel unstable. I keep telling my husband, “There’s too much to do. I can’t breath, my heart is racing, I feel like I’m going to have a stress-heart attack.” I lie down to rest and my mind … my god, it just races and my body feels full of electricity. I give up, come downstairs and speed talk at my husband. The other night he asked me, “How do you have so much energy right now, you didn’t sleep at all?” And I said, “It’s not energy, it’s adrenaline, it’s stress. Once the trip is sorted, this will stop.” That was my explanation.
I lost a little bit of weight and thought it was because I cut back on eating so many nuts. But I’m eating more in general: one minute I’m complaining about how full and uncomfortable I am and, five minutes later, I’m back in the kitchen looking for snacks. I said to my friend, “I’m stress-eating.” That was my excuse. I said to my Mom, “My hair has started to fall out again and it never even grew back from before.” In my mind, I was blaming the hair loss on weight loss, even though I’m only down a few pounds. That makes no sense! Such a small amount of weight loss hasn’t caused hair loss, your thyroid has caused both, you myopic fool.
A week or two before I started to notice all of this, I had increased my thyroid medication from 100ug to 125ug a day. I’ve changed my dose so many times over the years, I don’t give it a second thought. I certainly don’t monitor my body’s reactions because I am an expert at ignoring the signs, even when they’re not subtle. Just like when I was a workaholic and feeling these same physical symptoms, but thought they were just from job pressure.
When the penny dropped (I was recently told that Americans don’t know that idiom — it means you put two and two together or the light bulb went off), that all of it is overactive thyroid, I was so excited, so soothed. And it was suddenly so very obvious. This is textbook. I’m not an anxious person, I never have been. My neuroses are canted more towards rumination and second-guessing. It’s a fine line, but this tight, breathless, buzzing, heart-hammering feeling in my chest is not normal and is awful. Such a sad thing to realise that, even after all this time, with my body yelling its head off, I blindly make excuses. I could be standing here, cold and jittery, with a handful of hair in one hand and my third sandwich in the other, saying, “Gosh, this trip planning is stressful.” It reminds me of that scene in The Man With Two Brains when he’s looking at the portrait of his dead wife and asks her to give him a sign if his new girlfriend is bad news. After the ghost turns the room upside down, Steve Martin says, “Just any kind of sign. I’ll keep on the lookout for it. Meanwhile, I’ll just put you in the closet.” I’ve been putting my body in the closet. I’m so happy to finally know without a doubt exactly what my hyperthyroid symptoms feel like and even happier to know I can fix it.
It’s 7am on a Sunday and, in a fit of irked defiance, I made myself a cup of fully caffeinated Barry’s tea with milk — real, whole, pasteurized cow milk — and sugar. I’m shaking like a leaf now and don’t know if the sudden addition of dairy to my diet will have any effect, but, oh, make no mistake, there is nothing in the world like a proper cup of tea and I needed that comfort.
I went to sleep last night at 12:30am and awoke at 4:30am with my heart pounding from a stressful dream and I never went back to sleep. This isn’t uncommon — one of the sleep issues I’ve had since being ill is waking up at the end of every REM cycle. My sleep doctor couldn’t find any reason for it (apnea events, restless leg etc.) and it means that I remember multiple dreams every night. Unfortunately, they are all too often nightmares — tortured events that almost always revolve around my illness: I am being chased by murderers, but I am too sick to get away. My dogs are in peril and I’m too weak to save them. I’m homeless and being accosted by faceless strangers on the street and I have no energy to fight and no voice to argue. No voice is a recurring theme — the inability to yell for help, the inability to defend myself.
This morning, the breathless, heart-pounding awakening was caused by a dream about a friend who accused me of something I didn’t do 17 years ago. I won’t get into details because it is buried just enough to not engulf me in a tsunami of emotion and, when I finally deal with it, it will have to be parsed out in careful digestible bits, probably with my therapist. But, I think it is time to confront it. She was a friend I loved very much and with whom I had years of history. She is actually one of my facebook contacts because I don’t like letting anyone go, but my stomach turns every time I see her interacting with my old circle of friends, a combination of bitterness, jealously, embarrassment and mourning for the loss of that closeness and confidence in childhood loyalty. The situation actually changed the course of my life because, in the wake of it, I postponed a move back to Ireland and wound up meeting my husband soon thereafter.
Although I never believed it before, it occurred to me recently that maybe all this dealing with the past bullshit has some merit. In 2012, my counselor at the time tried to broach the subject of anger or hurt that I might be harbouring from my past and I shut it down. Emotionally, I felt fine until this horrific illness and all I’ve needed and wanted was help dealing with the abrupt loss of life as I knew it. Who cares about my parents’ divorce when I’m trying not to die every day and I want to die every night? But I’ve come through the acute stage of ME and have accepted where I am. My fear is justifiably about the future and the present feels pretty… matte. But the damn past has started gurgling up in my dreams. Last week I drempt that my old boss instructed me to open a bunch of restaurants in quick succession and I was too sick and ineffectual to do it. I woke up in a cold sweat of anxious panic and blunt anger at a job that always asked too much. There are demons in there.
So, today I’m starting with an email — or at least the contemplation of an email — to my old friend. Maybe I don’t need to go into the extended rant that always surfaces during those half-awake moments when I start to compose the letter. Maybe I just need to find my voice and say, for the record, I didn’t do it.
I have had an itch under my jaw, deep in the tissue of my neck for years. In 2009, I decided to mention it to a doctor one day and, although she didn’t feel anything abnormal in the area of the itch, she did casually say, “You do have a lump on your thyroid, though.” I had a thyroid nuclear test done and a radioactive iodine uptake test which showed two toxic multinodular goiters.”Toxic”, meaning thyroid hormone was being produced at an increased rate, which is why my thyroid stimulating hormone (TSH) tested so low. “Multinodular” because it was a late-stage goiter, meaning it had been around for a while and had a chance to grow and become lumpy. In my case, I had been hyperthyroid for at least 7 years ~ my first abnormal TSH result was in 2002, but my doctors never pursued it and I didn’t know enough to insist.
This was my first experience with specialists. I had only ever dealt with general practitioners and emergency room doctors. The research doctors that diagnosed me were bizarre. They came into the room and peered at me like I was a specimen, their faces frozen into pensive seriousness. I started cracking jokes to break the tension, but they didn’t respond in kind. They asked me questions with long quiet pauses in between, during which they would look at each other and mumble and nod: Do you have flushing? Are you intolerant to heat? Do you shake? Stick out your tongue. Hold out your hand. Have you experienced any anxiety symptoms? I finally stopped them and asked what they had found ~ they had told me nothing! Do I have cancer? No. Do I need surgery? No. Okay, now you can ask me more questions.
I had to do both nuclear medicine tests twice because too much time elapsed from my first round of testing to go forward with treatment ~ radioiodine ablation. After you have radiation treatment, you must stay away from people and animals for a few weeks, use different cutlery, use a different toilet and/or flush twice. It seemed like a big decision, but the doctors told me it was a terminal problem. I’ll never forget that. They said there wasn’t a very long life expectancy for people with untreated hyperthyroidism. Huh? Seriously? I didn’t seem to have a choice. So, I did it. I killed the whole thyroid and started taking hormones every day for the rest of my life. I never missed a day of work through this experience. During the segregation weeks, I holed up in the restaurant office, alone. I remember encountering a pregnant lady on my way to the rarely-used toilet in the basement and leaping back out of her space as if I’d been electrocuted… high-tailing back into the office so she wouldn’t be exposed to radiation. What must she have thought? 😉
Interestingly, I never felt like the symptoms abated. The flushing and hot flashes (my most visible symptoms, which I chalked up to oddly increasing self-consciousness) and the anxiety (which I blamed on my job) ebbed a little, but not much. And, of course, this was undoubtedly part of the priming of my body for ME. Hyperthyroidism and my anaphylactic episodes started about the same time. It was the beginning of the end.
Below are the photos and email that I sent to friends and family back then, hoping that it might open someone’s eyes to thyroid problems or make them listen a little bit more to their bodies. The fact that I thought I was having “devastating” and “debilitating” symptoms then strikes me as funny now… and sad. What was happening to my body because of my thyroid problems was NOTHING compared to what is happening to my body with M.E. They’re not even on the same planet … in the same universe. Can’t I go back to my old serious health problems?
I have attached 3 pictures that I took before I got radiation treatment (ablation). The first is looking at my neck as I stand relaxed, the next is with my head back and the third was taken as I swallowed. I can’t believe I never noticed the lump on my thyroid. I can’t believe nobody else did. I can’t believe, with 7+ years of abnormal TSH (thyroid stimulating hormone) levels, neither a doctor nor I, myself, looked any closer at my neck or my symptoms. [The radioiodine must have swelled my thyroid, however there was definitely a visible lump before treatment that I never noticed until it was pointed out -and it is unforgivable that no doctor ever took the time to look further into my bloodwork or palpate my throat.]
So, I guess I’m hoping this email influences everyone to pay closer attention to their bodies. Look closer: know every line and lump so you’ll recognise changes. Listen closer: if your body is constantly telling you it’s way too hot or way too cold or way too tired or way too hungry, don’t ignore it. Don’t wait for a doctor to find out what’s wrong with you ~ question everything that feels wrong.
It turns out I wasn’t overheated & flushing because I’d become suddenly self-conscious. It turns out I didn’t just “get lucky” with an amazing metabolism. I wasn’t having floods of anxiety that caused my heart to race & skip beats because my job was stressful. I wasn’t debilitatingly exhausted because I worked too much & didn’t sleep enough. Well, at least not entirely.
It’s still going to be a long road ~ my doctors say we could be tweaking my medication for years. I still vacillate between feeling ok and feeling dizzy and wasted… I eat about half what I used to… I’ll have to take hormones forever…. But, it’s not out of the question to go to a movie after a day’s work and I don’t spend my weekends crumpled in a ball, sobbing, asking what’s wrong with me while my husband wonders what to say….
I’m angry that I spent so long feeling that way and just explaining it away. I hope this inspires everyone to take a minute to think about your body and your quality of life. It’s all too short! Take care of yourselves!
Tomorrow is International M.E. Awareness Day. There are many events happening around the world, both online and in person. You can google your area to see if there is anything going on, but what I ask is something simple:
Please make an effort this month to talk about this disease. Look for opportunities to raise awareness. Don’t worry about being a “downer” or bringing up an awkward, depressing subject. Let people know that there is an illness that stops life in its tracks and has no approved drug treatments and very little funding for research. Explain that this has nothing to do with laziness, depression, tiredness or burn-out. Explain that there are test abnormalities, but doctors aren’t taught about the (possible/probable) etiologies of this disease so most do not recognise it and certainly don’t know what to test for or how to treat it. Make it known that patients languish in their homes ~ or, more likely, a family member’s home ~ are passed from dismissive specialist to thieving charlatan and back again, use up all their resources, and usually reach a point where they are trying to just survive because it is too exhausting to research treatments and search for medical help. Warn people that ME is often accompanied by crippling neurological issues, autonomic dysfunction, new allergies and multiple chemical sensitivity (MCS), postural orthostatic tachycardia syndrome (POTS), chronic migraines, irritable bowel syndrome (IBS), fibromyalgia (FM), mast cell problems (MCAD), sleep dysfunction and, of course, the depression and anxiety that would be hard to avoid with a diagnosis like this. These are all debilitating conditions in their own right, so drawing awareness to them is just as valuable.
As with many awareness campaigns, ribbons are worn to show support – blue for ME/CFS, purple for FM, and green for MCS. What I like about this is, it might bring up the conversation. Most people recognise the pink ribbon representing breast cancer awareness or the yellow Livestrong wristband which supports cancer survivors, but perhaps you will encounter someone who asks, “What does the blue ribbon stand for?” And then you can launch into your educational lecture. 🙂
A few things going on around the world:
Niagara Falls will be illuminated in blue tomorrow, May 12th, from 9:45-10:00pm EST to raise awareness to M.E. From 10:15-10:30pm EST the falls will be purple for fibromyalgia (FM) and from 11:00-11:15pm EST the falls will be green to draw attention to multiple chemical sensitivity (MCS). You can watch it on their live webcam. Or try: http://www.earthcam.com/canada/niagarafalls/
In London, there is the “All Fall Down for M.E.” protest outside the Houses of Parliament at the Old Palace Yard.
In Victoria, Australia at Melbourne University, there is an ME/CFS Educational Fun Run.
Bob Miller is skydiving to promote ME research in Lodi, California.
Read this article by Mark at Phoenix Rising to get all the details about these events and many more.
Finally, consider writing to your local paper to raise awareness. Read this post by the ME/CFS Self-help Guru for inspiration.
Thank you to everyone in my life that has talked about this baffling illness, raising awareness one person at a time. Thanks to my father for talking to his staff about this disease and to my mother for talking to her dog park friends about it and to Z. and E. for explaining my situation to other people I know and to my husband for constantly making excuses for my absence, trying to educate others on what is going on and raging at medical professionals’ and society’s ignorance, allowing me to be angry by proxy since I don’t have the energy for it.
Well, my summation of the visit to the Chronic Fatigue Clinic changed in tone a little when I received the paperwork and called to make a follow-up appointment. The next available opportunity to see the main clinic doctor is not until the end of April. After he asked me no questions and spent only about 20 minutes with us, I can’t ask my questions and get some advice on how to live for another 3 1/2 months? That’s almost a year from when I first picked up the phone to call them. What if I didn’t have an amazing GP and she hadn’t referred me to the Good Doctor? Would I just be floundering on my own all this time? I’m disgusted. The system is broken. There are no options for us. I guess I would have gone to specialty clinics and alternative medicine practitioners that don’t take insurance… So, I’d be in an even worse financial situation.
You can see below why I was annoyed (murderous) when I got the paperwork in the mail today. Only one of the boxes has a check mark because they didn’t do any blood tests and they didn’t touch me. They checked “‘tender points’ on your muscles” because I told them my muscles are sore. I haven’t had a blood test done in a year. They never said anything like, “There are these tests that we can do, but it’ll have to be the next appointment” or anything that might reassure me that they’re not either lazy or skeptical or both. Or the system just does not work.
And the referral to see their therapist says, “Patient with fatigue. Please evaluate for CBT. Also depression and anxiety.” My bubble is burst. It’s just like all the ME/CFS patients online said it would be. Graded exercise and CBT for depression and anxiety. I’m depressed my life is gone and I’m anxious that I might never have a good quality of life, but I’m not depressed and anxious clinically. So, why should I go back to see him? Is he at home in the evenings pouring over the medical literature and the studies like I am? Is he reading one after another personal story on blogs and in forums? I know more than they do and, more importantly, I know my body more than they do. I’m on my own in this.
PS: Our appointment was January 3rd, 2013. Idiot.
Today I read a post on a CFS forum titled “disappointed reaction from sister-in-law” which had me fired up in a way that is a rarity since I left my job. This woman had told her family she would not be able to attend a baptism on December 23rd and also be able to come over on Christmas Day to participate in all the festivities. Her sister-in-law asked, “Why? Are you sick?” and then, seemingly fed up with the CFS/ME/FM “excuse”, the sister-in-law decided to educate her on what the disease is and why she should be able to attend family functions. Why? Are you sick? My pulse is racing just typing that. It is utterly reprehensible that this disease is called chronic fatigue syndrome and that it is characterized by “post-exertional malaise” and that all medical tests are relatively normal and that we don’t look as sick as we are. It’s such an unbearable injustice to add this insult to injury.
It’s not just friends and family. I have given up talking to doctors after I realise they have zeroed in on my type-A personality or obsessive tendencies or the sleep problems I’ve had my whole life or the fear of getting sicker. It happens every time. I had a visit with a new sleep doctor today and I talked about my night sweats and then about how I’ve always been a light sleeper. I joked (kinda) that, even in sleep, I wanted to be sure I heard an intruder. Her next questions were about sexual abuse and anxiety and I realised I’d said too much. As a patient, you can’t really be 100% honest – because they’re DOCTORS, their job is to see what you don’t. However, I think the majority of the time patients are pretty self-aware. I had to steer her back. No, no, no, these night sweats aren’t from anxiety – they’re from death taking over my insides so all the fluid in my body is squeezed out of my pores over the course of eight hours. You can’t imagine how much fluid there is in a body. And my sleep problems now can’t be equated to my lifelong insomnia and lack of deep sleep – this year, I am tortured, thrashing, contorting in pain, in muscle spasms, constantly waking, never peaceful. Luckily, in the last three or four moths, I’ve gotten a handle on the sickly night sweats – by realising they were caused by over-exertion and took everything down to the “housebound” notch. But, my point was, I realised there wasn’t much point in recounting my story to this new doctor. She wouldn’t be able to shed any new light and, in fact, it was the opposite: it was a long appointment, it was difficult to tell her everything from the beginning, it was disheartening that she didn’t really say anything about my sleep – which is why I was there – and, in the end, she said she was leaving the practice at the end of the week. Wow. More wasted time, wasted energy, wasted money. But I had to go for insurance to cover my cpap machine. That’s the deal. That’s the racket.
I got off track: Why? Are you sick?
I used to say that I thought everyone in the world should work one week in a restaurant. That it should be mandatory in high school or college for each student to put in a minimum of 50 hours, rotating positions so that you have some concept of what it is all about. I usually would declare this after some moron degraded me or tried to pinch my ass or ordered something without looking at me, without saying please or thank you. And I mean ordered it – as in, gave me an order. I was an actor, so I’d smile through it. But really what I was thinking in my head was, you won’t get to me because I’m smarter than you, I make more money than you and I guarantee I’m happier than you. It worked for a long time. Until, one day, there was no amount of money that would have made me give one more performance.
Fast forward ten years and now I think everyone should spend one week in my house. Or the house of anyone with M.E. Actually, I wish we could all spend a week in a thousand different homes in a hundred different countries, expanding our understanding, knowledge and compassion…. But, this is what I know right now: this house, this disease. I wish the doctors and the friends and the employers and that lady’s sister-in-law could all live with this for a week. And I don’t even mean live with M.E. – I just mean live in the house with the person with M.E.
Let me narrate to you how I feel in the morning, the inventory I take of my body, the pain in my bones as I get up and dress. Let me talk to you about my food choices – what will cause me the least distress, what will help the nausea, what will be the least likely to aggravate the IBS, what I can make (or ask my husband to make) with no grains, dairy, gluten, legumes, or eggs. I will show you how I decide whether I have the energy to shower (involves standing up) or do laundry (involves going downstairs and leaning over) or empty the dish washer (reaching down and reaching up multiple times) or walk in the yard (involves boots, coat, cold, taking steps). I will tell you all day, every day how badly my head hurts and how much my hands ache and how broken my back is. You’ll be able to watch me grimace every time a dog barks and close my eyes when I walk into a room that doesn’t have a dimmer switch and massage my neck endlessly, have trouble getting out of my chair, walk like I’m crippled, cover my ears when the ads come on the tv, begging you to mute it. I can explain how every day I weigh the pros and cons of medications: Will this take care of the pain or give me vicious bounce-back headaches? Is it worth taking so much of this knowing the liver problems it can cause? Will I be able to tolerate the nausea, dizziness and insomnia of this long enough to let the good kick in? Will this help me sleep but not give me a hangover? Will this help my muscles enough that it justifies the bowel intolerance? Is this helping enough to justify the $60 price tag? Is this worth trying even though it suppresses my immune system? You’ll see how carefully I go to different areas of the house, how every trip is calculated: never, ever go from one room to another without taking something that needs to go there, too. No wasted movements. You’ll see how I plan phone calls on my calendar: no more than one a day and none on the days that I have doctor appointments. No wasted energy. And you’ll see how often I have to lie down in the dark and how early I go to bed and how quiet I’ve become. It’s very understandable why doctors would think I am depressed – my hair isn’t brushed, make up doesn’t exist in my life anymore, I have no energy for chipperness and no need to form connections by chit chatting. No wasted words.
Worse than doctors seeing the wrong thing, though, is doctors not seeing anything. I read my records from an appointment earlier this year – in the very sick, dark days – the notes said, “39 year old woman, well groomed and in no apparent distress.” All the fight just drained down my body, out of my feet and into the earth. I felt defeated and limp. I get it, this is how they describe their patients… certain terminology is used… But, if I wasn’t in apparent distress, then… Well, then, he needs to come live with me for a week. Maybe I’ll make him dinner and then we’ll walk around the block and have a lengthy, animated discussion …and then he can watch what happens the next day. He’ll be able to see how I curl up in a ball weeping from pain, unable to speak, unable to move, unable to eat. And maybe he’ll think, Distress is too small of a word. In fact, malaise doesn’t really cut it – and neither does fatigue. How about chronic persecution syndrome? How about post-exertional perdition?
Are we sick? Yes. We’d rather not have to plan every hour and foresee every hurdle. We’d rather not isolate ourselves and lose contact with those we love. We’d rather be at every baptism and birthday and Christmas celebration and dinner date. In fact, given the chance, I’d guess that people with ME/CFS as a whole, would be the life of every party. We’d be the ones dancing, singing, eating and drinking until the wee hours of the morning. Wasting as much energy and as many movements and words as possible. 39 year old woman, dressed to kill and apparently having a ball.