How can you learn to live well with chronic illness?
March 9, 2013 4:06 PM Subscribe
I have thyroid disease (hypothyroidism) and have been struggling for weeks as my body adjusts to a new medication. How can I keep my spirits up?
Truth be told, there are many people with far more debilitating chronic illnesses than I do. I've been lucky in my ways. My medication was working as planned and I felt very "normal" despite my diagnosis, until an infection (and subsequent antibiotic) threw my levels all out of whack. I've been struggling with adjusting to a new medication. For 3 weeks it's been the same, or more of the same: the dizziness, the brain fog, the heart palpitations, the extreme muscle weakness. I'm only 23 years old, but I feel like life has completely zapped that impermeable paragon of strength you feel as a young person. I want to feel like 'me' again. It's a struggle to keep my spirits up, or to get enough energy to do my university work. Is there anyone else on here with a chronic illness? How do you enjoy life, and not get bogged down by what you're suffering from?
Truth be told, there are many people with far more debilitating chronic illnesses than I do. I've been lucky in my ways. My medication was working as planned and I felt very "normal" despite my diagnosis, until an infection (and subsequent antibiotic) threw my levels all out of whack. I've been struggling with adjusting to a new medication. For 3 weeks it's been the same, or more of the same: the dizziness, the brain fog, the heart palpitations, the extreme muscle weakness. I'm only 23 years old, but I feel like life has completely zapped that impermeable paragon of strength you feel as a young person. I want to feel like 'me' again. It's a struggle to keep my spirits up, or to get enough energy to do my university work. Is there anyone else on here with a chronic illness? How do you enjoy life, and not get bogged down by what you're suffering from?
Response by poster: hi sageleaf. Did adjust my meds. Just hoping something changes... ugh. Anything.
posted by raintree at 4:22 PM on March 9, 2013
posted by raintree at 4:22 PM on March 9, 2013
I have a chronic illness. I also have workaholic tendencies. I have learned to accept downtime as not only inevitable but necessary to stay functional. I justify playing computer games, watching TV or music videos or otherwise "wasting my time" as a "first, do no harm" personal policy for getting the most out of life. When I was taking college classes, if I had 8 hours to do an assignment, I was better off spending 6 hours taking care of myself so I was functional enough to do something good in the remaining two hours. So I learned to prioritize "sharpening my axe" (taking care of myself first) since the damn thing is so dull, so to speak.
I try to use downtime to live more fully than my workaholic tendencies would allow if they could have their way all the time. Downtime has been an opportunity to watch movies, play games, make friends online, and so on that I wouldn't have the time for if I got to live the pedal-to-the-metal lifestyle I would be inclined to live if I were healthier. It still frequently annoys me, but it doesn't feel wasted. It often feels enriching.
posted by Michele in California at 4:28 PM on March 9, 2013 [4 favorites]
I try to use downtime to live more fully than my workaholic tendencies would allow if they could have their way all the time. Downtime has been an opportunity to watch movies, play games, make friends online, and so on that I wouldn't have the time for if I got to live the pedal-to-the-metal lifestyle I would be inclined to live if I were healthier. It still frequently annoys me, but it doesn't feel wasted. It often feels enriching.
posted by Michele in California at 4:28 PM on March 9, 2013 [4 favorites]
My experience was that basically I had to go through a period of mourning for my now-inaccurate self-image and expectations for my body and my life. It's rough - it's just fucking rough. But once I had more or less wrapped my head around it, I was better able to match my expectations with my abilities, and that helped me avoid getting into situations I couldn't realistically manage.
That's not really a how-to, is it? But it's ok to feel sad and disappointed, and to readjust your plans to take into account this period of adaptation. I'm sorry you're dealing with this.
posted by restless_nomad at 4:29 PM on March 9, 2013 [8 favorites]
That's not really a how-to, is it? But it's ok to feel sad and disappointed, and to readjust your plans to take into account this period of adaptation. I'm sorry you're dealing with this.
posted by restless_nomad at 4:29 PM on March 9, 2013 [8 favorites]
Get a really good endocrinologist. Your TSH might still be high for you but still what is considered "in range" (I feel terrible at anything above 3.5, for instance); you may need T3 AND T4 (via Armour, or added Cytomel). You may be more prone to Vitamin D deficiency and iron deficiency as well--and if you're hypothyroid due to Hashimoto's Thyroidosis, you may have an additional autoimmune issue going on as well (they travel in pairs or groups sometimes).
posted by availablelight at 4:30 PM on March 9, 2013 [5 favorites]
posted by availablelight at 4:30 PM on March 9, 2013 [5 favorites]
I've been taking thyroid meds for around 15 years and after the first year of getting the dosage right, I never thought about it again. I go to the gym, I work, I move my own furniture, etc.. At first I read all the thyroid boards and forums, and every time I sneezed, I blamed my thyroid. Now, I've stopped reading that stuff, and as long as my TSH is where I want it, I'm fine.
Better to have caught this now, when you're young, than later on, when you would have had much more trouble adjusting. Honest.
posted by Ideefixe at 4:32 PM on March 9, 2013 [4 favorites]
Better to have caught this now, when you're young, than later on, when you would have had much more trouble adjusting. Honest.
posted by Ideefixe at 4:32 PM on March 9, 2013 [4 favorites]
You didn't mention friends or support but my experience has been that people in their twenties (and even thirties) are not always tactful in accepting people with chronic illnesses. Make sure to surround yourself with people that validate you and don't waste your energy in "educating" ignorant people. This applies to family too that refuse to accept the new normal.
posted by saucysault at 4:36 PM on March 9, 2013 [2 favorites]
posted by saucysault at 4:36 PM on March 9, 2013 [2 favorites]
My wife has been living with hyperthrodism since she was a teenager. Once you get the dosage dialed in you'll basically forget about it. Also, if you are taking synthroid think about staying away from the generics. Thyroid dosing is very fine, and the generics can vary a bit in bioequivalency. For most things you'll ever take it won't matter. But for the thyroid it can. Or at least it does for my wife.
posted by COD at 4:59 PM on March 9, 2013 [1 favorite]
posted by COD at 4:59 PM on March 9, 2013 [1 favorite]
I found out I have a (in the scheme of things) relatively minor condition about 2 years ago. I had always considered myself 'completely healthy' before. My experience was like restless_nomad's - I had to sort of go through the stages of grieving for my ideal vision of myself. Denial, etc..... to acceptance. Once I had wrapped my head around it and realized that what I had was completely treatable and that focusing on treating it would solve the problems it was causing for me, I was able to take some steps to make myself feel very healthy again, and at this point I hardly think about it anymore. When a doctor asks me if I have medical problems, I usually forget and then say "oh wait..."
For me, even though the illness was treatable with medications, it helped me to focus on improving my diet and exercise. Eating healthful food and feeling athletic really helped me get that "I'm still healthy!" image of myself back.
posted by treehorn+bunny at 4:59 PM on March 9, 2013
For me, even though the illness was treatable with medications, it helped me to focus on improving my diet and exercise. Eating healthful food and feeling athletic really helped me get that "I'm still healthy!" image of myself back.
posted by treehorn+bunny at 4:59 PM on March 9, 2013
My experience has been the same as Ideefixe's. The first year was hard as my dosage had to be adjusted. But now, I feel fine -- never think about it. I hope the same for you. Talk to your doctor about this -- you can live with this. You will adjust.
posted by Lescha at 5:01 PM on March 9, 2013 [1 favorite]
posted by Lescha at 5:01 PM on March 9, 2013 [1 favorite]
I have ulcerative colitis, a chronic illness that involves flare ups that include diarrhea, bloody stool, gas and fatigue. Yay!
I'm 25 and was diagnosed ten years ago. I didn't ask for this illness, but I do my best to get enough sleep, eat well, exercise, manage my stress level and basically keep my mind, body and soul in working order. These are things everyone should do anyway, but when you have a chronic illness you learn to really be in tune with your body and know what makes you feel good and what doesn't.
Most people will face some sort of health issue over their lifetime and many people are too busy abusing their 23-year-old selves with fast food and tobacco and alcohol to really give a damn, so if you have to spin it positively, be thankful that you'll be forced to be vigilant about your health for quite some time.
posted by thank you silence at 5:34 PM on March 9, 2013
I'm 25 and was diagnosed ten years ago. I didn't ask for this illness, but I do my best to get enough sleep, eat well, exercise, manage my stress level and basically keep my mind, body and soul in working order. These are things everyone should do anyway, but when you have a chronic illness you learn to really be in tune with your body and know what makes you feel good and what doesn't.
Most people will face some sort of health issue over their lifetime and many people are too busy abusing their 23-year-old selves with fast food and tobacco and alcohol to really give a damn, so if you have to spin it positively, be thankful that you'll be forced to be vigilant about your health for quite some time.
posted by thank you silence at 5:34 PM on March 9, 2013
I agree with everything availablelight said above. With Hashimoto's and a ton of nodules I have to be hypervigilant about vitamins and anemia. I find that the Vitamin D deficiency is what brings on the general malaise quite often. It's not uncommon to feel pretty rough/feverish/weird even without vitamin issues. Stay hydrated, stay away from those imbeciles who come to work sick, keep eating clean. Every time I'm angry that I have to hit the gym twice as hard as before I had this I remind myself that it's still not thyroid cancer. Screw thyroid cancer.
posted by last night a dj saved my life at 6:15 PM on March 9, 2013
posted by last night a dj saved my life at 6:15 PM on March 9, 2013
I'll chip in with the others saying that I have hypothyroid but I no longer think of it much. I was diagnosed in 1998, and although my meds have needed adjusting a little bit from time to time, I have not really thought about my disorder much since the first year. Stay in communication with your doctor about how you are feeling, and continue to get the labs done. You will adjust and it will even out!
posted by veerat at 7:06 PM on March 9, 2013 [1 favorite]
posted by veerat at 7:06 PM on March 9, 2013 [1 favorite]
Thyroid dosing is very fine, and the generics can vary a bit in bioequivalency. For most things you'll ever take it won't matter. But for the thyroid it can. Or at least it does for my wife.
It does for me, too. And once you find what works for you, Do. Not. Let. pharmacists or physicians try to tell you that one of the other meds "is the same thing!" No matter how many people are in line in back of you. They are not the same.
I open the bottle at the pharmacist to make sure. Every time.
B12, B complex, and 500 IU of D help me a lot. If you have Hashi's, try going gluten free. Try Cytomel. If you are willing to tell us where you are located, some of us might be able to offer physician recommendations.
Go easy on soy, too.
Good luck!
posted by jgirl at 7:34 PM on March 9, 2013 [3 favorites]
It does for me, too. And once you find what works for you, Do. Not. Let. pharmacists or physicians try to tell you that one of the other meds "is the same thing!" No matter how many people are in line in back of you. They are not the same.
I open the bottle at the pharmacist to make sure. Every time.
B12, B complex, and 500 IU of D help me a lot. If you have Hashi's, try going gluten free. Try Cytomel. If you are willing to tell us where you are located, some of us might be able to offer physician recommendations.
Go easy on soy, too.
Good luck!
posted by jgirl at 7:34 PM on March 9, 2013 [3 favorites]
I have an immune deficiency and a genetic disease, nothing thyroid related. Working too hard when I should have been resting is what led to the collapse of my health and to my current state of disability; I also have always been something of an overachiever who just wants to get better. One book that I wish had been there for me (but which was only published last year) is How to Be Sick by Toni Bernhard (there is decent content at the website and links to where to order the book, Amazon or where ever). I also wish somebody had told me that resting would preserve my function and make things ultimately easier on me -- most non-sick people pressured me to do the opposite, that I should work and preserve a normal life as much as I could. Not at all the case! I'm sicker now because I tried to hide from the reality of my limitations.
Also, hypothyroidism and hyperthyroidism are different beasts and either can be caused by several different conditions, so I'd take any specific advice here with a grain of salt.
posted by sweltering at 8:04 PM on March 9, 2013 [3 favorites]
Also, hypothyroidism and hyperthyroidism are different beasts and either can be caused by several different conditions, so I'd take any specific advice here with a grain of salt.
posted by sweltering at 8:04 PM on March 9, 2013 [3 favorites]
What I am saying is, I guess, let yourself rest and slow down. It sucks, but it's vital to living well.
posted by sweltering at 8:07 PM on March 9, 2013 [1 favorite]
posted by sweltering at 8:07 PM on March 9, 2013 [1 favorite]
I have multiple chronic conditions including Hashimoto's, and every time I get a new diagnosis or have to deal with a new medication it's hard. Even if your hypothyroid becomes relatively easy to cope with once your meds are adjusted correctly, you are allowed to grieve the changes in your life. Hell, when I was 23 I didn't have a regular doctor and didn't even take vitamins regularly, never mind a medication I'd need every day for the rest of my life.
Looking through your previous questions, it seems like you can be hard on yourself for not meeting expectations, so I would encourage you to learn to ask for help. You say you're having trouble getting your work done for school - talk to someone about getting extra time to complete your assignments. Sometimes all it takes is a conversation with the professor, but your school's Dean of Students or the equivalent office should be able to tell you what you need to get accommodations due to your health - you don't need to be completely disabled to ask for accommodations. I know this then becomes one more task to complete, but the peace of mind would be worth it. Learning to ask for help can be difficult, but again, worth it.
In addition to books like the abovementioned How to be Sick, you might want to check out a site like ChronicBabe, which is specifically for younger women with chronic illness. There's a forum there as well and even if you don't participate it may be helpful to browse.
Take care of yourself, and I hope you start to feel better soon.
posted by camyram at 6:43 AM on March 10, 2013
Looking through your previous questions, it seems like you can be hard on yourself for not meeting expectations, so I would encourage you to learn to ask for help. You say you're having trouble getting your work done for school - talk to someone about getting extra time to complete your assignments. Sometimes all it takes is a conversation with the professor, but your school's Dean of Students or the equivalent office should be able to tell you what you need to get accommodations due to your health - you don't need to be completely disabled to ask for accommodations. I know this then becomes one more task to complete, but the peace of mind would be worth it. Learning to ask for help can be difficult, but again, worth it.
In addition to books like the abovementioned How to be Sick, you might want to check out a site like ChronicBabe, which is specifically for younger women with chronic illness. There's a forum there as well and even if you don't participate it may be helpful to browse.
Take care of yourself, and I hope you start to feel better soon.
posted by camyram at 6:43 AM on March 10, 2013
Have you taken selenium supplements? It gets prescribed against hypothyroidism sometimes. I don't take it all the time, but when I do I feel a real surge of energy after a couple of hours of taking it. My T4 has always been slightly abnormal (sub-clinical) and I can live with it, but selenium always makes those "slow" days better.
posted by ipsative at 1:15 PM on March 10, 2013
posted by ipsative at 1:15 PM on March 10, 2013
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posted by sageleaf at 4:19 PM on March 9, 2013 [1 favorite]