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Tips for Surviving When Chronic Illness Means You Can't Get Out of Bed

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I have now been unable to be out of bed for over eight months, and when I say that, I mean the only times I have left my bed are to use the bathroom, to go to hospital, and the few minutes where my mum changes the bed linen. As a chronically ill and disabled person, this is something I’ve experienced before but to a much shorter extent (no more than a couple of weeks). So, I took to the internet in search of tips for people in my situation, and I came back with nada! So if you’re currently stuck in bed due to chronic illness, here are the top tips I’ve learned.

1. Make your bed comfortable.

If you’re going to be in bed for a long time, you want to be comfortable. I use a pregnancy pillow, a supportive back pillow, and a heated blanket to help me get comfortable, but this will be different for everyone, so do what works for you. It’s definitely worth adjusting your bed to make it suit you. Some things may be a bit more expensive but there are cheap or free alternatives too. Work out what positions you sit or lay in most, and make sure they’re as supportive and comfortable as possible. And of course, soft blankets are a must!

2. Hydration and nutrition are essential.

Make sure you have everything you will need to stay nourished and hydrated within easy reach. I use one of those trolley shelves, and have plenty of drinks and nourishment on hand so if I’m alone, I can still look after my body. Nutrition looks different for everyone, so again, do what suits you.

3. Set up soothing lighting you can control from bed.

If you’re anything like me, harsh bright lights only make you feel worse. Try to have adjustable lighting in your room so you’re not always stuck with the biggest, brightest light on — this especially helps your body to know when it’s sleepy time (apparently!). I use dimmable lights and smart plugs to control my lighting, but just having a lamp by your bedside that you can turn on / off would probably work too.

4. Keep medication within easy reach.

For the first few weeks, I kept all my medication in a drawer just out of reach and it was a nightmare – I wouldn’t take it because I couldn’t get out of bed. It sounds so obvious, but if you have medications you take daily, or medication that helps when certain symptoms flare, keep it within reach of the bed.

5. Find diverse forms of entertainment.

Let’s face it, we’re going to be bored if we’re stuck in bed all day and all night. Netflix and other streaming services are great, but I recommend mixing it up where you can. I sometimes can’t bear to open my eyes, so I will use music or audiobooks, or if I can’t manage noise, I’ll play simple games on my phone. Find multiple ways to keep yourself entertained that suit your abilities without pushing yourself, and make a list of them on your phone or a post-it by your bed. Sometimes it’s hard to remember all the options and we just get bored and frustrated (my list includes every streaming service, music, audiobooks, really simple phone game and online shopping). Even swapping to a different program on Netflix for half an hour can just break up your day.

6. Yes, you can stay clean and maintain hygiene from bed.

It’s not easy to stay clean when we can’t get out of bed, but I’ve got some top tips to do the best I can. Bed-bath wipes are used in hospitals to bathe patients without the use of water, so these are great for giving your body a freshen-up. Keep your hair in a style that works for you – for me, it’s French plaited once a month and it just stays out of the way and is far less greasy than constantly putting products on it. Change your pajamas when you can. I may not be able to bathe but a wipe down with a bed-bath wipe and a fresh pair of pajamas makes me feel fresh! And my favorite tip of all – lint rollers! Lint rollers will be your best friend when you’re stuck in bed. All those bits of fluff and crumbs that just get in all your nooks and crannies are so easily sorted with a lint roller; they pick up everything!

7. Practice self-care to address anxiety, depression, and stress from spending your life in bed.

It can feel really difficult when we’re stuck in bed and everyone has their own ways to make themselves feel calmer. I cope by writing out my feelings (sometimes with speech-to-text software), chatting to my mum, getting support from the chronic illness and disability community, and watching my comfort shows. My typical management for feeling stressed and overwhelmed would be to clean or cook but when this wasn’t possible, I found myself getting even more stressed so I really recommend finding ways to help soothe yourself that are possible from bed.

If you are living in bed for a long time, you’re going to realize who is there for you and who isn’t. I know it’s a cheesy line, but it is so true. If people do start to fade away, make hurtful comments, or do the classic “I don’t know what to say” followed by total silence, remember it’s OK to do what you need to do to manage your feelings around this. It’s OK to block, mute or ignore people (if it is safe to do so) to protect your health.

8. Rest — yes, taking time to rest is essential even if you can’t get out of bed.

I know how obvious this sounds, but seriously. If you’re living in bed because of your health, your body is most likely telling you you need to rest and slow down, so don’t keep trying to find “productive” things to do from bed. It’s OK if you don’t crochet your cat a million outfits, write a book, or join an online course. Your body needs to rest, so let it. If all you did was blankly stare at “Grey’s Anatomy” without taking anything in, that’s OK.

9. Take care of you.

I’m sure there will be people reading this for whom this won’t be totally possible (parents, carers etc.) but for those who can, prioritize yourself. Do what works for you, and don’t apologize if that doesn’t suit others. It’s OK to be unwell, and to not do everything you did before. It is not fair to hold yourself to the same standards from when you were not restricted to bed. Talk to those who understand, or don’t pick up your phone for days, whatever works for you. It’s easy to think we need to put more effort into friendships or work or school because we’re “doing nothing in bed” but that’s not the case — you are not doing nothing, you are taking care of you.

And most importantly…

10. Remember that you are not a burden and this is not your fault.

Your body needs time to rest, and it is OK to let it. You are not alone in this, there are many people out there who are or have been restricted to bed for long periods. We’re all just too knackered to write a post about it!

This story originally appeared on A Spoonful of Pain.
Getty photo by Dragon Images.

Originally published: October 17, 2021
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