Coping with (hemo)goblin mode - how to be ill
June 7, 2023 9:03 AM
I was recently diagnosed and briefly (4 nights) hospitalised with sudden and severe iron-deficient anaemia. I've been back home for a week and a half and am waiting on results/further tests and (oh the joy) a colonoscopy next week. My haemoglobin levels dropped extremely rapidly but are back up a little since I've had two iron IV treatments. My GP and docs at hospital are a bit mystified, but things are moving slowly (I'm in the UK, so this is all through the NHS). My GP is doing what she can to keep investigating, and in the meantime has signed me off work and told me to rest while I receive treatment and investigation. I do feel a lot better than I did (horrible headache and pounding in ears has decreased) but I am very tired, and just... not sure how to be ill? While I feel better, I'm not at all living a normal life, so it's hard to know how I'd feel if I was trying to go to work/walk around etc. For those of you who've been in similar circumstances, how do you cope? Do you try to have a routine?
I very much appreciate that I am lucky to never have been this ill before, and I'm trying to stay positive, but finding it very hard to know what to do with myself. I'm usually a very active person (especially since giving up alcohol - see my post history) and was, in fact, away on a strenuous hiking holiday right before I became ill. Having also recently been dumped, my plan for this summer was to do loads of hiking and wild camping and running (have already missed two 10k races!), and instead I'm stuck in the house. I am estranged from my family (see alcohol/post history!), but my friends have been great - I've had visitors most days I've felt well enough. But... today I've mostly been in bed sleeping or messing on the internet all day. Some of that because I genuinely am tired and have slept, but some, I think, because I'm bored and feeling pretty lonely and sorry for myself. For example, I have a friend coming over in a hour with some food, and she has offered to drive me to the park or beach just to get outside. But I'm not really feeling like making conversation or going outside, even though it's sunny and I've logically been feeling cooped up in my flat.
I'm well enough to make myself food and do gentle stuff around the house - I can do laundry and keep the kitchen wiped down, but I've not been vacuuming or anything more strenuous. I'm really not at all much of a TV person so I've been reading a lot, and listening to audiobooks/podcasts, but also kind of feeling like I should be doing more productive things like organising digital photographs. I like to game, but haven't felt at all like playing anything.
I would really appreciate knowing how others cope in similar situations - I am ill enough to have to rest, but could probably make myself go outside slowly. Do you try to work on more involved things like puzzles or models? Do you try and have a routine? I'm not sleeping that well at night, but then also sleeping during the day. But then my understanding is I'll continue to be tired until my iron levels are back up - which could take weeks to months. I've read the advice in this question - am more interested in how to navigate being at home 'resting' rather than managing the anemia itself - the medical side of things is progressing (albeit slowly).
Any advice very gratefully received.
I very much appreciate that I am lucky to never have been this ill before, and I'm trying to stay positive, but finding it very hard to know what to do with myself. I'm usually a very active person (especially since giving up alcohol - see my post history) and was, in fact, away on a strenuous hiking holiday right before I became ill. Having also recently been dumped, my plan for this summer was to do loads of hiking and wild camping and running (have already missed two 10k races!), and instead I'm stuck in the house. I am estranged from my family (see alcohol/post history!), but my friends have been great - I've had visitors most days I've felt well enough. But... today I've mostly been in bed sleeping or messing on the internet all day. Some of that because I genuinely am tired and have slept, but some, I think, because I'm bored and feeling pretty lonely and sorry for myself. For example, I have a friend coming over in a hour with some food, and she has offered to drive me to the park or beach just to get outside. But I'm not really feeling like making conversation or going outside, even though it's sunny and I've logically been feeling cooped up in my flat.
I'm well enough to make myself food and do gentle stuff around the house - I can do laundry and keep the kitchen wiped down, but I've not been vacuuming or anything more strenuous. I'm really not at all much of a TV person so I've been reading a lot, and listening to audiobooks/podcasts, but also kind of feeling like I should be doing more productive things like organising digital photographs. I like to game, but haven't felt at all like playing anything.
I would really appreciate knowing how others cope in similar situations - I am ill enough to have to rest, but could probably make myself go outside slowly. Do you try to work on more involved things like puzzles or models? Do you try and have a routine? I'm not sleeping that well at night, but then also sleeping during the day. But then my understanding is I'll continue to be tired until my iron levels are back up - which could take weeks to months. I've read the advice in this question - am more interested in how to navigate being at home 'resting' rather than managing the anemia itself - the medical side of things is progressing (albeit slowly).
Any advice very gratefully received.
I find having a routine pretty crucial. I think it's definitely worth going outside - I find that food, socialization, and mental stimulation are three things where if I'm not getting enough of them, I stop craving them and think I don't need them, but I still do.
I find that having some task I don't want to do helps with boredom. If I can just do whatever I want all day, I stop wanting to do any of it. Forcing yourself to do one unpleasant thing provides a nice contrast so that you can better enjoy the time you're not having to do it.
posted by wheatlets at 9:26 AM on June 7, 2023
I find that having some task I don't want to do helps with boredom. If I can just do whatever I want all day, I stop wanting to do any of it. Forcing yourself to do one unpleasant thing provides a nice contrast so that you can better enjoy the time you're not having to do it.
posted by wheatlets at 9:26 AM on June 7, 2023
You might like listening to the audiobook of How to be Sick by Toni Bernhard. I listened to at least the start of it when my long covid was particularly bad (easier than reading).
It calls itself 'Buddhist-inspired' - it's more about the mental approach you take to being ill, rather than the practical side of things, so YMMV as to whether that would be useful to you. I think for me, even just knowing this was A Thing and I wasn't alone was useful.
You might find that things that you used to think of as restful - watching TV, reading, socialising indoors - are actually surprisingly tiring, and that if you can partition off regular periods of time for genuine rest, you'll preserve a little more energy for doing interesting things.
Nature always feels helpful to me in that regard - it's surprising how interesting it can be even just staring out of the window at the trees waving in the wind. And I bought one of those swirling galaxy lights and there were evenings where lying on the sofa staring at that on the ceiling was more achievable and more restful than trying to concentrate on TV.
posted by penguin pie at 9:49 AM on June 7, 2023
It calls itself 'Buddhist-inspired' - it's more about the mental approach you take to being ill, rather than the practical side of things, so YMMV as to whether that would be useful to you. I think for me, even just knowing this was A Thing and I wasn't alone was useful.
You might find that things that you used to think of as restful - watching TV, reading, socialising indoors - are actually surprisingly tiring, and that if you can partition off regular periods of time for genuine rest, you'll preserve a little more energy for doing interesting things.
Nature always feels helpful to me in that regard - it's surprising how interesting it can be even just staring out of the window at the trees waving in the wind. And I bought one of those swirling galaxy lights and there were evenings where lying on the sofa staring at that on the ceiling was more achievable and more restful than trying to concentrate on TV.
posted by penguin pie at 9:49 AM on June 7, 2023
I am a person who has chronic anemia and has to have iron infusions at least once a year. Are you a uterus-having-person? If so, your anemia could very well be caused by chronic heavy periods or a ruptured ovarian/uterine cyst. I hope you get answers soon, at any rate.
When I'm in the bottom of the bell curve for iron, I'm just so very tired. And the brain fog is ridiculous. At those times, I just really give myself a lot of grace and try to remember that I'm not being lazy or unproductive, I'm literally doing what my body absolutely needs me to do: rest. My body cannot tolerate me being super active and productive and go-go-go. If I don't listen to my body at those times, I will just make myself worse.
The only thing you should be doing right now is resting. That is is. That is your full time job at the moment. Whatever resting means to you (reading, sleeping, playing on the internet), that's what you need to do.
posted by cooker girl at 10:01 AM on June 7, 2023
When I'm in the bottom of the bell curve for iron, I'm just so very tired. And the brain fog is ridiculous. At those times, I just really give myself a lot of grace and try to remember that I'm not being lazy or unproductive, I'm literally doing what my body absolutely needs me to do: rest. My body cannot tolerate me being super active and productive and go-go-go. If I don't listen to my body at those times, I will just make myself worse.
The only thing you should be doing right now is resting. That is is. That is your full time job at the moment. Whatever resting means to you (reading, sleeping, playing on the internet), that's what you need to do.
posted by cooker girl at 10:01 AM on June 7, 2023
Agreed that resting is your job right now, and its an important job.
One thing that might help, though, is (slowly) setting yourself up a designated "office to rest" somewhere in your house that is not your bedroom. It should be somewhere you can put your feet up and lean your head back and nap if your body feels like napping. It could be near a sunny window or somewhere you can get fresh air. It should have soft blankets, and perhaps a pillow, good access to outlets, a small table stocked with things you need. It might also have a different, lower area nearby to set food on, or your laptop, or you whatever amusements you can tolerate.
(You could ask friends to help move your furniture around it you need to create a space to do this)
You might also find it nice to order yourself some slippers, and some comfortable clothing that is specifically NOT your athletic clothing or your pajamas, some clothing just to lounge in. This will become the clothing you wear to your new "office" - your work wardrobe while you do the work of getting well.
Spending the day in bed will 100% mess with your sleep schedule. Stay in bed as long as you are asleep, but once you wake up, make a point to try and get up and change your clothes (baby wipes can be helpful if you want to feel refreshed but showering sounds too hard). Then go to your new "office" and rest there. If doing puzzles or lego sets are of interest, do those. Or perhaps plant some seeds that need just a small amount of tending each day. Audiobooks. I have a friend who read giant cookbooks while she was ill and kept a notebook of things to try when she was well. Watch videos if you'd like. But stay in your "office" as much as you can, and do the work of resting and healing.
posted by anastasiav at 11:08 AM on June 7, 2023
One thing that might help, though, is (slowly) setting yourself up a designated "office to rest" somewhere in your house that is not your bedroom. It should be somewhere you can put your feet up and lean your head back and nap if your body feels like napping. It could be near a sunny window or somewhere you can get fresh air. It should have soft blankets, and perhaps a pillow, good access to outlets, a small table stocked with things you need. It might also have a different, lower area nearby to set food on, or your laptop, or you whatever amusements you can tolerate.
(You could ask friends to help move your furniture around it you need to create a space to do this)
You might also find it nice to order yourself some slippers, and some comfortable clothing that is specifically NOT your athletic clothing or your pajamas, some clothing just to lounge in. This will become the clothing you wear to your new "office" - your work wardrobe while you do the work of getting well.
Spending the day in bed will 100% mess with your sleep schedule. Stay in bed as long as you are asleep, but once you wake up, make a point to try and get up and change your clothes (baby wipes can be helpful if you want to feel refreshed but showering sounds too hard). Then go to your new "office" and rest there. If doing puzzles or lego sets are of interest, do those. Or perhaps plant some seeds that need just a small amount of tending each day. Audiobooks. I have a friend who read giant cookbooks while she was ill and kept a notebook of things to try when she was well. Watch videos if you'd like. But stay in your "office" as much as you can, and do the work of resting and healing.
posted by anastasiav at 11:08 AM on June 7, 2023
I've found that learning a language using Duolingo is a good balance of something that feels constructive and useful, while still requiring no physical effort and remarkably little mental effort, and being very easy to pick up and put down as you feel like it.
After a bit of this you can also start watching YouTube videos or Netflix in the new language with subtitles, which is handy if you feel like you've run out of content!
posted by quacks like a duck at 11:24 AM on June 7, 2023
After a bit of this you can also start watching YouTube videos or Netflix in the new language with subtitles, which is handy if you feel like you've run out of content!
posted by quacks like a duck at 11:24 AM on June 7, 2023
When I was young, I was anemic for several years, though never hospitalized. It's horrible, and I feel for you. Everyone offering help were right, but at the same time, I just never had the energy for what they suggested. Anyways, being outside, so you can get some vitamin D, is really good. To this day, I love taking a nap outdoors, because it triggers good memories. So if your friend could bring you to a park or beach where you could sleep outdoors safely, that would be beneficial. They can watch over you and read a book while you sleep. Tell them that is the deal in advance, so they don't expect chatting. Obviously, you need to have some body parts exposed to the sun, but IME, you don't need to be sunbathing, if that makes you feel uncomfortable. I needed a blanket to sleep, so it was just my arms and face that were exposed.
For me, the iron injections and then later supplements were horrible, which delayed my recovery. I struggled with nausea and indigestion. On the other hand, I love iron-rich foods to this day, like spinach, broccoli and liver. Eat all the spanakopita and the chicken-liver paté and crostini. Lentils are good too. Helpful friends can help you with this. It's really good to combine these foods with vitamin C rich foods, and that is so easy. Have a glass of orange juice with your meal. Or a kiwi fruit for dessert. The greens combine both, and spinach or chard with butter and lemon is a beautiful, tasty and healthful dish that I could eat every day all year round. Or make a stew with lentils, onions and spinach.
Unfortunately, my deficiency returned both times I was pregnant, and it was harder to deal with because I also had hyperemesis gravidarum, meaning I threw up all supplements and felt terrible after injections. But I have lived to tell you that the iron deficiency is not very important in that context. And for me, spinach was always delicious.
posted by mumimor at 1:12 PM on June 7, 2023
For me, the iron injections and then later supplements were horrible, which delayed my recovery. I struggled with nausea and indigestion. On the other hand, I love iron-rich foods to this day, like spinach, broccoli and liver. Eat all the spanakopita and the chicken-liver paté and crostini. Lentils are good too. Helpful friends can help you with this. It's really good to combine these foods with vitamin C rich foods, and that is so easy. Have a glass of orange juice with your meal. Or a kiwi fruit for dessert. The greens combine both, and spinach or chard with butter and lemon is a beautiful, tasty and healthful dish that I could eat every day all year round. Or make a stew with lentils, onions and spinach.
Unfortunately, my deficiency returned both times I was pregnant, and it was harder to deal with because I also had hyperemesis gravidarum, meaning I threw up all supplements and felt terrible after injections. But I have lived to tell you that the iron deficiency is not very important in that context. And for me, spinach was always delicious.
posted by mumimor at 1:12 PM on June 7, 2023
Thank you all - marked all as best because I feel there is something very useful in every answer! I am going to work on accepting that I need to rest, but also get myself out of bed to another space (couch) as anastasiav suggests, and I've also sent a stressful email which has been frustrating (and the brain fog!) but also I'm glad I've got something unpleasant out the way, as wheatlets suggests. I also did go with my friend last night and get some sunshine and felt better for it.
I'm lucky in that I've been finding the IV iron ok - a little bit of nausea but nothing major. I do have a uterus, but regular and light periods and no recent changes, so docs have ruled that out. I've also had scans to check for any cysts or growths, which have come back negative.
And as it happens, I have one of those little crystal rainbow makers and have very much enjoyed just watching that when it's been sunny - might branch out to a galaxy light as penguin pie suggests.
Thanks all again - already feel better just having some ideas and not beating myself up for being tired. I'm doing fairly well about not freaking out about what could be causing this (docs think an unusual kind of bleed as I'm not obviously passing blood anywhere, or something sudden autoimmune) - more finding the resting/change of active plans difficult to cope with. I do also realise I'm very lucky to have supportive friends and secure employment which allows me to have time off and still be paid.
posted by sedimentary_deer at 10:47 PM on June 7, 2023
I'm lucky in that I've been finding the IV iron ok - a little bit of nausea but nothing major. I do have a uterus, but regular and light periods and no recent changes, so docs have ruled that out. I've also had scans to check for any cysts or growths, which have come back negative.
And as it happens, I have one of those little crystal rainbow makers and have very much enjoyed just watching that when it's been sunny - might branch out to a galaxy light as penguin pie suggests.
Thanks all again - already feel better just having some ideas and not beating myself up for being tired. I'm doing fairly well about not freaking out about what could be causing this (docs think an unusual kind of bleed as I'm not obviously passing blood anywhere, or something sudden autoimmune) - more finding the resting/change of active plans difficult to cope with. I do also realise I'm very lucky to have supportive friends and secure employment which allows me to have time off and still be paid.
posted by sedimentary_deer at 10:47 PM on June 7, 2023
If your fatigue has been worse since your iron infusion and that iron infusion was ferinject, check with your doctors that your phosphate level has been reviewed.
posted by chiquitita at 7:10 AM on June 9, 2023
posted by chiquitita at 7:10 AM on June 9, 2023
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So. Resting-wise: reading is great, so is lying down and listening to podcasts. If you like baths and lotions those can feel really nice while your body is struggling. Wearing really soft and comfortable clothing and taking the time to really feel the comfy-ness can be a small but pleasant thing. And really deeply listening to your body and its needs-- this is not a time to make yourself do anything. This is a time to treat yourself with real gentleness and consideration. In terms of socializing, I sometimes find that big chunks of 'on' time are a lot but I love asynchronous communication with friends--Things like texting, short e-mails, trading funny memes and pictures.
You do not need to be productive. You do not need to push. You are allowed to rest.
posted by jeszac at 9:24 AM on June 7, 2023