in bed with chronic illness

Bear woke up at 2 am. “It’s burning hot in here,” he said. “I have to turn on the air conditioner.” The giant floor unit wheezed to life as he fiddled with it.

“I have to open a window,” he said.

I was barely awake. “Just not too much,” I mumbled. “Minute…” I didn’t want the cat to jump out the window. Do cats even do that?

Bear was lumbering around, sleep-haired and bleary-eyed. “I need cold water,” he said. “I need really cold water.”

“OK, honey, OK,” I said, pulling myself out of bed. “There’s water on the counter.”

“I need it to be COLD.” He sounded desperate.

“There’s ice in the freezer…”

He was already opening a bottle of fizzy water, and I knew it would spray everywhere, because the last one had. “Wai–” I said. It exploded. He jumped back, making a furious sound.

Great. Here it comes.

“Why can NOTHING go right?” he cried. “Why is everything terrible?”

 

Yup. There it is. Bear’s blood sugar was high. It had been high all evening, and it wasn’t going down. He had already worked out, which usually helps keep it even. He had not eaten any carbs. We’d had chili and buffalo chicken thighs and baby bok choy for dinner. Maybe he’d just eaten too much of everything. Maybe his pump wasn’t working again. Sometimes the catheter is twisted a little and the insulin can’t flow into him the way it’s supposed to. Maybe he was getting a stealthy cold– that makes his blood sugar crazy even when he doesn’t get other symptoms.

Bear went back into the bedroom. The door slammed. I stood in the kitchen in my underwear. I looked around. It was a mess. I started cleaning. Minute, the tiny golden cat, was mewing and weaving all over the place. She had been knocking things over since we went to bed. She was having a very enthusiastic night, tinged with franticness. She jumped up on the counter, where she was not supposed to be. I ignored her. Bear says I’m really bad at discipline. I don’t like yelling at her.

“This is how you’re going to be with our kids,” he says.

“No!” I protest. And then, “Maybe. I don’t want to yell at our kids.”

The counter was a disaster. Dirty dishes spilled out of the sink. Another light was out above. It’s a different one every day. I moved slowly, putting things away. Mew mew. Minute wanted chicken. She is obsessed with chicken. She doesn’t like cat food. SHE WANTS CHICKEN. It’s a good thing I’m always making chicken.

“Don’t make it just for her,” Bear always says.

“I wouldn’t do that!” I say. I never do. But I  make her her own piece when I make us some.

“Kate!” came Bear’s muffled voice from the bedroom. I almost didn’t hear it.

I go in. He’s sprawled on the bed.

“I need you,” he says. “I feel so sick. I’m so hot. I need your support. I need you to be sweet to me.”

I get into bed and hug him. I stroke his sweaty head. He’s so miserable. His cute face is scrunched up.

“I’m so thirsty,” he says. “I’m so thirsty.”

(I wish I could give him this. source)

(and this. But really I just want someone to cure this damn disease. source)

“Do you want more water?”

“My stomach is full of water. I can’t drink any more. It’s my blood sugar. I have to wait.”

“OK.”

“Can you tell me a story?”

I tell him a story about a young man growing up in a tiny cow-herding village at the foot of a great mountain range. Past the ancient forest, deep in the mountains, there are dragons. The king, who lives far away in a glittering white marble palace at the edge of the deepest, clearest lake in the land, has sent his best huntsmen to kill a dragon and bring back its head for his wall. But the young man, Finn, thinks that dragons shouldn’t be killed. Sometimes he hears them singing in the night– keening, mournful song that seems to be their form of communication. Sometimes he wonders if they’re trying to talk to him. All Finn’s life, he’s loved Kaeli, the beautiful golden-haired girl who the other two young village men of his age also love. But when he ventures into the ancient forest on his manhood quest, which he has decided will involve meeting the dragons, he meets another young woman– one with a bow and arrow and a scowl, who warns him to turn back. Who tells him that she has already met the dragons and they want nothing to do with him. Her name is Brellen, and she will be the beginning of Finn’s great adventure.

“Don’t talk about the lake,” Bear mutters. “It makes me more thirsty.”

But he relaxes. And eventually, he’s bored of the story.

“To be continued,” I say. I am really tired. It’s after 3 am. I try to roll over.

“Please don’t fall asleep,” says Bear. “I need you to stay with me.” He flips me back over.

At least he hasn’t said the other thing he says when his blood sugar goes too high at night, too many days in a row. The other thing he says is “I’m killing myself.” His voice is always tight with frustration when he says it. It’s always his fault. His fault that he’s not being better at managing the disease. Even though he  works out nearly every day– has cut carbs out of his diet completely, and has to constantly test and regulate his blood sugar. It’s nonstop. If he slips up. If he’s in a meeting for too long and forgets to test. If he gets too hungry. If he eats too many snacks. It is never ending. And then there’s all of this horrible, threatening looming stuff– the dark consequence of too many mundane mistakes– permanent nerve damage from consistently high blood sugar over a period of many years. Heart problems. Organ– I don’t want to think about it.

The first time he said “I’m killing myself,” with that fear and anger in his voice, I cried. Now I try to push the words away. He’s just upset. He gets irrational when his blood sugar is high. He gets paranoid. Those are common symptoms of high blood sugar. My dad was even worse.

But even now, when I see him suffering, in the middle of the night, suddenly everything is fragile. This life we’re building– so much of it depends on us being able to be healthy enough to participate in it. And his illness is always there. Sometimes it’s in the background. Sometimes it’s lying in bed with us, throttling him, driving him insane.

“Please don’t fall asleep,” Bear says again.

“I won’t,” I promise.

And so I stay up. Until eventually we can turn off the blasting air conditioner. It’s freezing in the bedroom by then.

Until Bear can finally fall asleep.

*  *  *

Anyone else living with someone with a chronic illness? I know some of you have chronic illnesses yourself. I wonder how you think about your illness in terms of your relationships with other people?

Unroast: Today I love the way my hair, growing shaggy now, has formed a mane. I am lion girl!!

42 Comments »

Kate on February 8th 2012 in being sad, family, marriage, relationships

42 Responses to “in bed with chronic illness”

  1. Claire Allison responded on 08 Feb 2012 at 4:54 am #

    I have a bladder condition called interstitial cistitis. It’s a degredation of the lining of my bladder. The medication takes months to start working, and you never really have a normal bladder… but it’s better now than it was a year ago, when I’d get up out of bed 10-20 times before I even fell asleep and 3-5 times in the night. Now I can sleep through the night, get up about 3-7times before I fall asleep and can even ignore my bladder for about a half hour to an hour. It sounds insignificant, especially in comparison to Bear’s diabetes, but it’s an unnecessary frustration in my life. There are foods I shouldn’t eat… and frequent stomach pain and stabbing pains that make no sense.

    It’s one of those things that makes me realize that even though I’m only 26 my body is frail and, likely, only going to get worse. It’s like what you said, so much is dependent on us being healthy. My medication costs money, even though I’m Canadian and at least have a public health system, but I still need insurance to pay for the meds… and come the summer I won’t have any. Health problems just end up becoming this extra burden in the back of your mind, the reminder that a trip somewhere interesting will require food that fits your needs, that I can’t be stuck in cars or planes for a long time, and that I’m always apologizing for being that one person who can’t eat or do something everyone else can. In terms of my relationships with other people? It makes me feel like a hassle or a burden.

  2. P Flooers responded on 08 Feb 2012 at 6:20 am #

    I can’t speak to chronic illness. I can only offer (((hugs))).

    On raising children, I just read an interesting article: http://online.wsj.com/article_email/SB10001424052970204740904577196931457473816-lMyQjAxMTAyMDAwNzEwNDcyWj.html?fb_ref=wsj_share_FB_bot&fb_source=home_oneline

    On cat food: make your own! Commercial cat food is ill. Your cat actually needs the chicken. (Just like Bear.) I’ll blog my recipe for anyone interested.

    And more (((hugs)))!

  3. Lili @ Relatable Style responded on 08 Feb 2012 at 6:51 am #

    Hi Kate, I hope Bear is doing better now. Best wishes to him! It must be super frustrating to be “surprised” by diabetes in this way every now and then. It is funny how precious health gets when it’s not around. People that have never been affected by anything non-transitory can rarely understand. Just yesterday I said to my co-workers that it’s strange how many people I know that have issues with food. I am lactose intolerant, and right now trying to find out if food causes my allergy problems (that is a minor issue compared to Bear’s problems of course), my best friend cannot eat gluten and has a chronic colon inflammation, my co-worker cannot eat a lot of foods due to rheumatism (she’s 30), my mom, her best friend, my best friend (her daughter) have thyroid diseases and so on. I’m not sure what to make of this, but it was enough to wonder.

  4. Lynellekw responded on 08 Feb 2012 at 6:56 am #

    Our cats have been uninterested in meat other than commercial cat food (to be fair, they do get the expensive high-quality kind) until quite recently, when one of them developed an obsession for ham. They eat other people-food if they get the chance (one of them looooves cheese and potato crisps and fresh chocolate cake – the only food I have to protect from cat attack is chocolate cake), but usually won’t eat meat, raw or cooked. The one that’s recently picked up a taste for ham has started scavenging other foods too – cheese and pineapple and corn kernels. Crazy beasts.

    Chronic illness of any kind is no fun. No fun at all. I just remind myself that I only feel like this TODAY – that tomorrow might be different, and next week, and next month… I just have to wait it out right now. And try not to blame myself when I eat something that causes me pain. Sometimes I forget. Then when it’s midnight and I’m wondering if I should go to hospital and retracing my steps to work out what it was that did this to me and I remember that I ate X, I think – frak, I know that’s bad. Why did I eat that. What if I’ve caused myself a major problem. What if I have an obstruction – or a perforation – and I’m really really unwell or I need surgery or I DIE and it’s my own fault? Once I didn’t seek medical help when I should have, and years down the track I asked my surgeon – would this have been as big a problem if I’d gone to hospital on Wednesday instead of Friday? He said – we can’t know, this might have happened anyway. The same surgeon, when I had my in-laws take me in to hospital one night and told the staff, I’m sorry, it’s just that I was on my own at home and I couldn’t even keep water down and I was just worried, told me – you did the right thing. My specialist, when my mother fretted that I wouldn’t take the medication that she thought I should, said – we can trust her to make the best decisions for herself. It’s so hard to NOT second guess yourself, to train yourself to think – I did the best I could and it’s not my fault that I’m malfunctioning. Life continues. All I can do is live the best life I can, so that I look back and see times I was happy and fulfilled instead of only times where I was sick and miserable.

  5. Sarah Rooftops responded on 08 Feb 2012 at 8:11 am #

    I have endometriosis and my last boyfriend had Crohn’s disease so I’ve been on both ends of it… and they’re both frustrating. I found it so hard to maintain my patience with somebody who was suffering in some way I didn’t understand – surely it couldn’t be as bad as he said it was?! – but I also feel guilty and pathetic when my endo flares up and my boyfriend has to deal with me not wanting to ever get back off the sofa again. I haven’t found a solution for either situation!

  6. Anne responded on 08 Feb 2012 at 8:27 am #

    I suffer from migraines and have severe asthma, I have always hated being sick and as a wife and mom now, I really HATE the toll it takes on my family. I get sick a lot and and I hate every second of it! Chronic illness for one’s family often is frustratingly expensive, physically draining, and emotionally exhausting. On the other hand, my daughter has JRA or something like it, (don’t get me started on how impossible auto-immune disorders can be!) and I would would do anything if I could just take her pain and bear it for her. Chronic illness sucks for everyone and their family and that is all there is to it! Still we try to live every day to the fullest, make the most of our good days and never let it keep us down.

  7. Faith responded on 08 Feb 2012 at 9:08 am #

    I live with type 1 diabetes as well. Bear is so blessed to have an awesome wife like you! I know that feeling all too well. As long as you continue to be there for him, everything will be fine!

  8. Mallory responded on 08 Feb 2012 at 9:32 am #

    Diabetes is always lurking in the shadows, over here. My Mom’s dad died of it when he was in his 40′s, because back then they didn’t have any sort of treatment plan. All of his sons have it really bad and my mom nearly escaped it. She was just diagnosed with Type 2, but they also discovered a Thyroid problem and suggested that if they can get her thyroid under control, the diabetes might go back to being a lurker. This was something unusual for a Dr. to say & I have a feeling they just didn’t want to throw too much at her. If and when it comes my way, I’ll be ready for the fight – just like your Bear.

    Also, I was so in to that story you told. I sank a little when you said to be continued, haha!

  9. Emmi responded on 08 Feb 2012 at 10:18 am #

    What you go through with Bear, I’ve been there with my Dad. He’s also diabetic but refuses to take good care of himself. He’s gotten all the horrible long-term issues – bleeding in his eyes, gastroparesis, needed a toe amputated, etc. I hate that someone who tries so hard to take care of himself like Bear gets hit with such awful issues. I want to smack my Dad and make him take better care of himself, but he won’t listen.

    Almost exactly three years ago, I was diagnosed with Crohn’s disease. It finally got under control after another year, with powerful and dangerous infusions of a drug called Remicade. I get a 3 hour infusion every eight weeks. The Remicade dose alone costs almost thirty thousand dollars. A single dose. If it weren’t for health insurance, I’d probably be dead or dying.

    The Remicade works great, but what it does is shut off my immune system so it will quit attacking my digestive system. This means I have to constantly act like a mysophobe, which is less than fun. Last Friday, I threw caution to the wind and hugged a friend. Two days ago I came down with the Norovirus, hard. I have to keep taking my temperature, because if I spike a fever then I have to go in hospital for observation.

    Thankfully I have a ruggedly healthy husband who is willing to force Gatorade down my throat and make funny faces at me to keep me laughing. Even last night, in the midst of gastrointestinal fireworks from both ends, he said I still managed to look cute. I’m pretty sure he was lying, but it made me feel better anyway.

    I’d cure my Crohn’s in a second if I could, but at least it’s made me more keenly aware of how ephemeral life is, and how much there is to appreciate. We make the best out of what we have.

  10. San D responded on 08 Feb 2012 at 10:23 am #

    I can only paint a picture of illness from the perspective of a cancer survivor. I saw my experience as a marathon swim. Sometimes I was bobbing alone in the huge waves that would try to overcome me, other times I was swimming as best as I could, even though it was a truncated doggy paddle. All of the times it was a marathon only I could swim. I never flailed against the waves because I knew I would sink. Mostly I remained calm and floated letting the experience take me where it will. You are Bear’s beautiful mermaid in his swim who comes up and sings to him getting him through the stormy waves. He will always be in the ocean. I was able to get to the shore.

  11. Barbara responded on 08 Feb 2012 at 10:55 am #

    Type I diabetes is unforgiving. I know. I have it also. Just when you think you’re doing fine, there’s a deviation from routine, an unplanned dose of carbs, or worse, a crimped canula, and WHAM! It hits you back.

    It took me a long time to get past the anger and emotion this brings and try to be clinical about it. You just continue to do the best you can because at the end of the day, you really have no choice. That is how I deal with it.

    Appreciating that everyone has something they have to deal with makes you feel less sorry for yourself.

  12. B1 responded on 08 Feb 2012 at 1:16 pm #

    I find it interesting that you say that he has cut out as many carbs as possible, but the body does need some carbs. I have type 2 diabetes and when I spoke to the nurse about it, she said that I needed to cut down on the carbs but also ensure that I was getting enough protein WITH the carbs that I do eat. She said that the carbs and proteins will bind together and be processed better by the body.

    I’ve luckily have never experienced anything like what Bear did but I do pray that he finds a balance in his foods to make life easier with his diabetes.

  13. Kimmy Sue Ruby Lou responded on 08 Feb 2012 at 1:26 pm #

    my oldest daughter has type 1 diabetes (since age 10, she almost died)…16 years later, it is still a scary struggle…i’ve been to the ER with her so many times…and i worry constantly since she no longer lives with me…the only thing worse than a really high blood sugar is one so low you can’t talk at all…i do not envy bear or you, but…it’s what you have on your plate.

  14. Carol Adams responded on 08 Feb 2012 at 2:48 pm #

    Your post touched my heart. You are so sweet to Bear. I do have several autoimmune Chronic illnesses which have required steroids which in turn caused diabetes. I KNOW what it feels like to have the high blood sugar and the feelings bear has gone thru. My A1c was 14 when I was diagnosed… scary…. and you feel soooo crazy sometimes. fortunately my A1c normalized pretty quickly and i have not had many of those scary moments. I did have a moment back in Nov. DH, daughter and I were flying back from LA. It was very late, I had eaten (I thought) but after we landed and were safely in the car I felt odd, spacey and just thought I was really really tired since it was 2 am. Checked my BS and it was 30 !!!!! OMG… Kinda freaked me out as much as it could even tho I was very very spacey!!! So my freaked out DH and daughter were yelling at me to eat something…. and in my spaciness I was all slow motion. It’s humorous now but geesh. I’m an RN and this diabetes thing is certainly different when on the other side. I don’t think any of my patients have had a BS that low…Anyway, I soooo enjoy reading your blog. You and Bear are cute together! Best wishes, dear heart!!!

  15. Tina responded on 08 Feb 2012 at 3:06 pm #

    I have chronic pain. Now when I say that people say how bad is that why can’t you walk or stand, why can’t you push thru the pain. I’ve had six foot surgeries landing me with, to quote a “Boston Sports Doctor” who treats all our athletes, with the worst case of permanent nerved damage in both feet and so much scar tissue which people do not understand also causes pain. I also have 2 bulging discs and a bone mass pressing on a nerve. There are no surgery options for me not for my feet, not for my back. I’m in constant pain that cannot even be touched or control with a morphine pump, Vicodin or Oxycontin. I cannot stand or walk for more than 10 minutes before I’m in so much pain I’m literally getting sick from it. I have gone thru hell and back again since the beginning of a mess where I let a doctor who screwed up the first surgery continue on. In the end full of hope going to the sports doctor after all those surgeries and all the treatments some so painful my husband couldn’t even watch them, only to hear I have no options other than pain management. I’ve been seen by four different pain clinics all building my hopes up but after reviewing everything telling what I already know there are no options. Of course more than one of them has offered to do those same painful and expensive procedures to see if they can get better results. Did I mention how painful, how expensive most not covered by insurance and if they are you must submit it to the insurance board and hope and pray they do I cannot even begin to tell you the amount of debt I have caused us. I sit not able to do anything to help around the house, with my kids, in severe pain that I cannot even hide on my face and wondering how much more can they take before they wish I wasn’t here. I hate seeing my husband work 50 hours a week and have to come home and do everything. I hated when my kids were in highschool and wanted to go out and do things and it was always no I’ve had surgery, no I have pain, No I’m on pain medications that prevent me from doing so. I sat and wondered will they get resentful why wouldn’t they the most fun parts of your life are those years in high school and I prevented them from doing so much. I hate the medications they barely take the edge of the pain and make you so sick that you are put on the strongest nausea medication that is usually give to patients who are undergoing chemotherapy and it doesn’t work. You are constantly vomiting or wondering whether you will get sick or be able to push thru it. I hate that I cannot push thru the pain do people not understand its not that easy? No they don’t they tell you it cannot be that bad, they tell you if you just put it out of your mind you can overcome it and lets not even go to what people think of you and judge you when you get those scripts of high dosage addictive medications. I’m not an addict, I don’t have a pain medication addiction I am not a dope head. I’m not drunk I am very unsteady on my feet and no not just because of the medications because every step feels like a knife going thru my foot and ankle but thanks for the looks and comments. I constantly battle with not wanting to be here because i have nothing to offer my kids or my husband. Its been 8 years and I don’t remember a day, an hour, a few minutes that I haven’t been is excruciating pain. I have nothing to offer them. I cannot sit here and watch my husband struggle to keep up with work, the house, the kids. I’m selfish because like your husband there are days and nights that are so bad that I need my husband to be there and help me get thru the worst of the pain because its times like those I’d rather just give up and may if he were not there for me. I hate that I need that because when I’m thru it he still has to get up and go to work with very little sleep. I hate that I’m needy and asking for more. To the haters that think chronic pain isn’t real, (have I introduced you to my monster in law)that its in my head, that I’m faking it or that I just want attention and yes she has said it all. I’ll trade and be in your shoes for just five minutes without pain. Its day, night, there are no breaks there is no stopping it. I carry so much guilt about my husband and kids that is a struggle to wonder if I’m worth all this. I understand how you feel and hurt watching your husband because I see it in my own husband’s face. There is no light at the end of the tunnel and I truly do not believe my husband and kids should have give up and do all that they can for someone who cannot even be part of the family. I feel tremendous guilt and do not know what to do with it and I certainly do not feel worthy of all they are giving up and doing. I hate that when I’m gone all they will remember is the mother who couldn’t do anything, was in constant pain, or sick and loopy from the medications.

  16. gwen responded on 08 Feb 2012 at 4:17 pm #

    God, that’s awful. What a horrible disease.

    You are doing right by him, though. It’s good for his mental and physical health to have a partner he can be that vulnerable and honest with, and who cares for him with so much kindness. Even if you can’t fix it, you’re helping it just by sharing it with him.

  17. Deedee responded on 08 Feb 2012 at 5:33 pm #

    To Tina, (Sorry Kate for using your blog to ask her this question)…In all seriousness and with a gentle, curious tone- is amputation an option for you? Please don’t read any snark into this question…

  18. Kate responded on 08 Feb 2012 at 5:59 pm #

    @Deedee
    HOW DARE YOU WRITE TO ANOTHER READER ON THIS FORUM!!

    I’m totally kidding. Please don’t feel ANY need to apologize to me for having a conversation! Conversations are good :-)

    Also, that was possibly the politest way to ask a question ever. I need to learn from you.

  19. Spelling responded on 08 Feb 2012 at 5:59 pm #

    This doesn’t hold a candle to what other people have said, but I used to have severe migraines, dizziness, and vomiting as a result of Meniere’s disease, which had to do with too much fluid in the endolymphatic sac in my ear. I had to get a shunt in my ear to help drain the fluid, and that (and a growth spurt, I had this when I was five to when I was about ten) helped chase it away. However, when I first started getting sick, I would throw up every day after eating school lunch. We had no idea what caused it, but I would vomit and have the worst migraines. We tried to figure out what caused it for months until we were finally referred to an ENT (ear-nose-throat) specialist who diagnosed me. From there on out, I couldn’t eat any salty things (even a slice of bread was enough to get my body going!). Like I said I know this is nothing compared to what other people have gone through but it still sucked! To all of you who are dealing with something 10x worse – God bless you!

  20. Kate responded on 08 Feb 2012 at 6:05 pm #

    @Spelling
    That sounds incredibly difficult. I don’t think we need to compare order of magnitude– dealing with anything that makes you sick on a regular basis is just plain shitty.

    For a while, something was going wrong with my period, and I was put on birth control (I was 14 when this started) and it made me throw up ALL the time. Sometimes it’d be every night. I still remember how incredibly terrible that time in my life was. I remember lying on the bathroom floor praying and praying for it to stop.

    Even a short year like that makes me have a lot of respect for people who aren’t going to get better. It’s important to remember how incredibly lucky it is to be healthy!

    I really, really appreciate everyone sharing stories here. I want to respond to all of them, but right now I’m just letting them sink in.

  21. Amanda responded on 08 Feb 2012 at 6:31 pm #

    Hi Kate-
    If you haven’t looked into the research that suggests a strong connection between animal products and diabetes, I highly recommend it! Studies have found that people with type I diabetes can significantly reduce their insulin doses after switching to a plant-based diet (with noticeable results after a few weeks). Here is a short clip from the movie “Forks over Knives” and I highly recommend watching the whole thing! (if you have netflix it’s on instant).
    http://youtu.be/FxFai4iVOtk
    I really hope he feels better; it is so hard watching someone you love suffer.

  22. Kate responded on 08 Feb 2012 at 6:35 pm #

    @Amanda
    I don’t know a ton about this stuff, but Bear does a lot of research about diet and managing the disease. We’re always experimenting…I’ll ask him what he thinks about this! Thanks!

  23. Marjie Brown responded on 08 Feb 2012 at 6:38 pm #

    Wow. Kate, I was really moved by this. I’m so sorry you two have to struggle like this. I love the reality and tenderness and frustration and love that come through in this piece. You do everything right, and you still have to go through this. Sucks. Period. I have a new appreciation for type 1 diabetes sufferers now for sure. What an awful, shitty disease. I had no idea.

    For the other illnesses many commenters are living with, I offer this – my husband and I, both in our fifties, have eliminated migraines, IBS, asthma, arthritis, chronic pain, skin issues, cystitis, thyroid, hormonal and metabolic problems, and brain fog by eating (mostly) according to these three books: (While ABSOLUTELY consuming CAKE and WINE whenever we feel the need! Hell yeah)

    Primal Body Primal Mind – by Nora Gedgaudas
    Food Rules – by Catherine Shanahan MD
    Deep Nutrition – Catherine Shanahan MD

    Your doctor will not tell you to eat like this, because your doctor has never heard of eating like this. Check it out. Hope this can bring some of you a little relief. I’m in awe of everyone’s strength.

  24. Lezley responded on 08 Feb 2012 at 8:54 pm #

    I have lupus. I was diagnosed when I was 15, and I’m nearly 32 now. Over the course of those almost-17 years, I’ve only been seriously ill 3 times. All 3 of those times, I came close to dying. But I know that I’m really lucky. Compared to others that I’ve met, I seem to have a relatively mild case. I’m not even on medication right now.

    For the most part, I’m able to lead a life that’s almost entirely “normal”. I’m fairly active, and I work out 5 times per week. There are a handful of things that I need to stay on top of — getting enough sleep and rest, trying to keep my stress levels down, limiting my sun exposure, avoiding certain foods. But because I don’t get sick often (and when I do, I get SIIIIIIICK), I can sometimes even forget that I have a chronic illness. Again, I’m very lucky.

    In terms of relationships… Sometimes I worry that people will think that I’m faking. For example, there are days when I can’t function properly because my disease is kicking my ass. On these days, I need to cancel my plans so that I can lie around the house and try to get my strength back. Because I don’t look any different (I don’t get pale or sweaty or anything — no obvious physical differences between Fatigued Lezley and Regular Lezley), I’ve been accused of being lazy, exaggerating my symptoms (“milking it”, as one ex-boyfriend so lovingly phrased it), avoiding my responsibilities, and just straight-up faking. Hearing stuff like that is absolutely heartbreaking… but the silver lining is that it’s a good buffer for keeping jerks out of my life.

    It’s been a few years since my last near-death sick phase, and another concern of mine involves people who have entered my life since then. They know about the disease and they’ve heard my horror stories about what’s happened before, but they’ve never actually seen me sick with their own eyes. So if I end up in the hospital again, I wonder which of these people will visit me and which will deem the relationship too high-maintenance or something and distance themselves. But this brings the same silver lining I mentioned before — it’s a good jerk detector.

    I hope that Bear is feeling better!

  25. Diana responded on 08 Feb 2012 at 9:47 pm #

    What touched me the most about your post was your husband’s ability to ask you for support by saying, “I need you. I need you to be sweet to me.”

    My husband wouldn’t ever ask for help. He once hit a tree stump on a bike trail, flipped over his bicycle handlebars, cracked his helmet, lay unconscious for 4 hours, dragged himself and his bike home and then drove himself to the hospital. He never uttered a word of “could you take me to see a doctor?” He just took it upon himself to go alone even though I was home, wondering where he was taking the car after his bike ride.

    The story would come out later as “Yeah, I think I hurt myself so I drove to the clinic for a head x-ray.” The doctor would fill in the other details for me when I called for more information.

    Or the time he was ill with double-pneumonia; the doctor had to take me aside and say, “I need your permission to medi-vac him out of the village tonight by helicopter or he will be dead by the end of the week.” I was caught me off-guard, since my husband was putting on his jacket and saying, “I’ll just go home and rest.”

    Or the time he slid into 3rd base during the company picnic softball game, sliced open his kneecap to the bone on the stake that held the base in place. The only way I knew what was going on was when his teammate came running over to me to say, “Did you know blood was pooling in his shoe? I think he needs to see a doctor now.” I had to pull him off the field while he protested, “It’s just a flesh wound; I’ll be fine.” I tried not to gag at the sight of the huge flap of skin hanging from his knee and wonder if it was a bone or cartilage hanging out.

    I wish my husband had the capacity to ask for the tenderness you exhibit to Bear when he is deep in the throngs of his illness. I wish my husband leaned on me and depended upon me the way Bear does towards you.

    Only my kids lean on me that hard, that often, that much. It’s just not like him to put himself out there that much, to be that vulnerable, even around me.

    I wish he would just be more like Bear and just ask.

  26. Tina responded on 08 Feb 2012 at 9:54 pm #

    I’m not in any way offended by that question but its both feet and ankles, and the back pain down thru my hips. It has never been brought up I do know they would not operate on both feet at the same time. I’ m not sure how much of the pain would be taken away with the back issues. It feels good to be able to get it out because I do feel so much guilt for my husband and children and knowing this it, it will never get better most likely get worse. I can also sympathize with all of you with migraines. I’ve had them since I was 14 have been hospitalized for them. I have shots at home to take when they get bad but sometimes that isn’t enough. You can find your triggers for migraines like mine are peanut butter, cheese or any msg guarantees a trip to the hospital. What most people don’t realize is its not just identifiable triggers that cause them, stress, depression all are triggers. I get cluster ones so I can have one after another for a solid week or two and then they are gone only to come back again.

  27. Alpana Trivedi responded on 08 Feb 2012 at 10:47 pm #

    Kate, I’m so sorry you’re going through this. You are really sweet and kind and Bear is very lucky to have you. Quite frankly, y’all are lucky to have each other, from what I’ve read in your other blogs. Anyway, I don’t know the right thing to say in this situation other than just that here’s an e-hug for both of you: ((((((((((((((((((((((((Kate/Bear)))))))))))))))))))))))).

    Okay, that was probably lame, but I’m really good at hugs. They’re very comforting.

  28. Kate responded on 08 Feb 2012 at 10:50 pm #

    @Alpana
    THANK YOU!!!!
    ((((((((hug back!))))))))

  29. Buttercupia responded on 09 Feb 2012 at 2:30 pm #

    I’m sorry he’s struggling with this but please let him know that what he is going through is in no way his fault. he is not bringing this on himself. Diabetes is still largely a mystery. He is not at fault for finding it difficult to control.

  30. Kate responded on 12 Feb 2012 at 2:25 pm #

    @Buttercupia
    Thank you. It’s true! I think people sometimes think that diabetes has been “solved.” It’s a very complicated disease– there isn’t really one easy answer, unfortunately. And you’re right– it’s not Bear’s fault. I wish he wouldn’t blame himself so much!

  31. Kate responded on 12 Feb 2012 at 2:28 pm #

    @Diana
    I’m sorry that your husband seems so uncomfortable being vulnerable with you (or anyone)! On the one hand, that sort of behavior can be interpreted as very manly. He’s totally self-reliant, in control, tough, etc. On the other hand, it clearly makes your life more difficult! I hope that he learns how to be at least a little more vulnerable with you. But I’m sure the self-reliance is great in other areas!

  32. Eat the Damn Cake » educated women marrying down responded on 13 Feb 2012 at 2:36 pm #

    [...] My dad has a fake front tooth, the same one, because his was also knocked out when he was a kid. Bear, like my dad, is a type 1 diabetic. They are both extremely hairy. One day, they will both be bald. You don’t have to try too [...]

  33. kate responded on 20 Feb 2012 at 10:25 pm #

    I feel for you lady, Hubby is asthmatic (severe.) and the little sassy girl is too (she is only 5, and is really mild) but I have sat up many a bleary eyed night rocking and rubbing hair just waiting for the sun to come up hoping she will feel better.
    Ever heard of the book “primal blueprint”? theres a blog too, http://www.marksdailyapple.com great forum connected with it. They are all people staying away from carbs/grains so they have tons of awesome advice, plus there are quite a few diabetics there.

  34. Eat the Damn Cake » time responded on 09 Apr 2012 at 12:49 pm #

    [...] of cells that were all trying to do the right thing. His cells were not all doing the right thing. Some of them were broken. And he carried his life around in a little black kit, with a vial of clear liquid that needed to [...]

  35. Eat the Damn Cake » cold feet responded on 02 Jul 2012 at 1:17 pm #

    [...] a husband, without even a moment’s hesitation. I met Bear, he had an incredibly sweet face, his insulin syringes made me feel at home, and he was so comfortingly [...]

  36. daphne responded on 02 Jul 2012 at 9:48 pm #

    I was in a long-term relationship with someone who became extremely ill with chronic fatigue syndrome (for real — not the thing where people just think they are really tired all the time) and Lyme disease. It was really, really hard. When things were at their worst — when “I’m going to kill myself” started sounding less like a threat and more like a comforting mantra (not me — her), I would buck myself up. Do something nice for myself. Remind myself that I needed to be healthy first and foremost, so that I could handle whatever life threw my way. I started to take care of myself (once of course her immediate needs were taken care of). In that way, I avoided becoming sick along with her. One person at least needs to be healthy. That relationship ended, but I am grateful for the lessons I learned about taking care of myself in times of great stress and fear. Bear is doing what he needs to do to take care of himself. Your job is to take care of you (so you can take care of BOTH of you when you need to).

  37. Chris responded on 11 Oct 2012 at 3:57 pm #

    Hi,
    I am a 34 year old diabetic on a pump as well. Reading about your (husbands) nights of high blood sugar really hit home for me an my fiance. I say a lot of that same stuff Bear says and act the same way. You have a really wonderful reaction and a wonderfullly caring attitude about it all and that made me smile. My loved one does as well and I think that’s important. This was a great read. If Bear doesn’t already use a CGM (Continuous Glucose Monitor) tell him to look at the Dexcom. The dexcom has brought my levels down considerably and has been a godsend. I wasn’t intested in this device at first but I’m so thankful that i gave it a try. I wouldn’t live without it now. I still need improvement with by blood sugar levels but this device has certainly made my life better. I rearely get so hight that I’m dying for cold water anymore. That’s due to the Dexcom no doubbt. Thanks for the read.

  38. Caren responded on 12 Oct 2012 at 12:16 am #

    I was diagnosed with Rheumatoid Arthritis 16 years ago. 3 years after that my husband had a massive heart attack that should have killed him, but had him on full disability 6 months later. He’s gone on to have a staph infection invade his heart necessitating open heart surgery; a rare adrenal gland mass causing an overproduction of adrenaline in his system (called a pheochromocytoma); thyroid cancer; 3 different procedures for pacemaker/defibrillator implants; and most recently, stage 4 bladder cancer. Because of his medical condition mine has had to take a back seat. I’m grateful every day our relationship started out as close friends before it grew. If we did not have that foundation under us we could not have survived the almost 13 years we’ve dealt with his health issues. It’s been a lot to deal with, but nobody would have dreamed he would still be here. Our daughter was barely 8 when this all started, and really doesn’t remember Dad when he was healthy. As a result of growing up watching what he went through she is now a junior in college working toward her BSN. We take each day at a time, and are appreciative of every one we’re given together. As a result of what we’ve been through I have little patience for selfish whiny behaviors from those who are fortunate not to have real problems, but insist on creating them for their entertainment. Marriage IS hard at times. Dealing with chronic illness is hard, too. So? We do what we have to do. There are no other options.

  39. Rachel responded on 12 Oct 2012 at 4:15 am #

    I have never read your blog before, but I came upon this post via the link from the Huffington Post article about marriage. While that article was unrelatable to me at the present time, this one hit so close to home that I found myself in tears, and wanting to share my own story with you.

    I am very young. Still in college. It’ll be six months since the first day I was able to legally buy alcohol in a couple of days. And yet, I relate to this post very profoundly on account of the fact that my boyfriend, Anders, of two years- with whom I am presently going through a rough patch on account of distance, I’m sad to say- was diagnosed with a rare illness called Behcet’s Disease last year, after a six month period in which he was too sick to work, too sick to do much of anything. He and I found ourselves living together on account of poor planning and an inability to find roommates quickly. We had never intended to move in together for romantic reasons, it just… happened, because it was financially the best choice at the time, and it was difficult because neither of us was ready for it. But that’s beside the point. In January of last year he began experiencing bizarre symptoms, all while under my watch, and over the six month period prior to his diagnosis they worsened and became increasingly distressing. He had weekly fevers (which usually peaked at around 103) that caused him to overheat at night, he’d have night sweats so terrible that he’d saturate his sheets and leave pools on the mattress. He’d get up to open the windows and turn on the air conditioner, too, and he’d ask me desperately for water, in a voice so fragile and sad that it broke my heart. He’d get chills from the fevers, too, and on 100 degree nights in our apartment without air conditioning would beg me to get under six layers of blankets with him to keep him warm. I had to oblige, because what else can you do for someone you love so much?

    I drove him to his doctor’s appointments in his car when he became unable to walk on account of severe inflammation in his hip. I scratched the bumps on his skin which were so characteristic of his rare illness, and I cooked him special food when he had open sores in his mouth so severe he could barely speak. I remember him screaming in his sleep because the inflammation in his sternum was so excruciating, I remember him saying something similarly morbid to what your husband says, which was “Rachel, I’m dying.” I’d sit, dull-eyed at a nearby coffee shop, chain-smoking with frizzy hair and big sunglasses on to hide my eyes swollen from crying and lack of sleep when I needed a moment to myself. I was a wreck. Doctors said perhaps he had leukemia, or some sort of incredible hypochondria brought on by the stress of losing his job. I said the latter of the two was preposterous, and the former too horrifying to consider.

    When he had been in bed with a headache so severe he could barely open his eyes for nearly a month, and they laughed at him in the emergency room for coming in for “just a headache,” I snapped. They told him he had a sinus infection, because his sinuses were inflamed. I pulled the nurse into the hall, and screamed with frustration that he did NOT have a FUCKING SINUS INFECTION. She at last agreed to do one more scan of his head, and in his jugular vein they found a gigantic blood clot- also a symptom of Behcet’s, and one that could’ve easily killed him within the month.

    It was maddening. It was tragic, seeing a man several years my senior who had been in perfect health when I met him crying out in his sleep and saying he wished he were dead. Neither one of us has any immediate family here in Utah, (where, at the time we both lived and I still do,) as we are both from the east coast, so all we had was each other. And incredibly, it brought both of us through. It would be heartless to suggest that my psychological suffering was even comparable to what he was going through, of course, but I know what it’s like to be on your side of a situation like that. It’s heartbreaking, but I do believe that love is the best medicine there is.

    I have never shared this story in a public forum before. I hope it isn’t weird. I just wanted you to know that your story really moved me, and that you’re not alone in your experience of gutwrenching empathy for a chronically-ill loved one. Anders finally got a diagnosis after the blood clot incident, and is now on (some really scary) medicines (that he also swears will kill him,) but he’s back at work and his disease is under control.

    I sincerely hope that your husband stays well, and that you continue to be a force of such positivity in his life. It’s all you can do, and it’s so incredibly difficult, but it’s worth it. Good luck, truly, and thank you for sharing.

  40. Renee responded on 20 Oct 2012 at 10:42 pm #

    I’m a type 1 diabetic. Have been for 26 years and am engaged. By fiancée and I have been together for 7 years. I often wonder how he handles giving me glucagon when I won’t wake up from a low blood sugar because I don’t feel them coming on anymore. He’s such a trooper.

  41. Eat the Damn Cake » it’s fair to be disappointed by how you look responded on 30 Nov 2012 at 12:48 pm #

    [...] am better at Bear being sick than I used to be. I used to just cry sometimes, when his blood sugar went really high and he’d say hopeless things about how he’s killing himsel…, because I could imagine him dying. Last night, I just held him and told him it’s really hard to [...]

  42. J responded on 16 Jan 2013 at 12:05 am #

    Kate – I have a genetic medical condition which makes me quite sick on occasions. Thankyou for writing this piece, it really helped me to understand what my partner goes through when I’m ill. Sometimes I’m able to process his pain and facial expressions, but a lot of the time I can’t, my brain is just to occupied dealing with pain and a bunch of other symptoms. There’s literally nothing left to give anyone else, or even full operate myself for the most part. Reading your post really helps me process what he goes through.

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