Sunday, 26 January 2020

What no one tells you about being Housebound

Whether you're housebound some or all of the time, here are some things you might come across.


1. Time loses all meaning.

The five years I've been housebound feels simultaneously like no time at all, and an eternity. I regularly get my own age confused. When did that thing happen I thought was last week? At any point during the last 6 months, that’s when.
It’s like that weird haze between Christmas and New Year but ALL THE TIME.
The only reason I have a fighting chance of knowing what day it is is because of my pill box. And the alarm to remind me to take them, because what time is it again?


2. Schadenfreude on rainy weekdays

Would I rather be leaving the house? Yes. Does it make me feel much better that I can’t when Monday rolls around and its battering down? Also yes.


3. You will feel differently about the days.

You know what happens on Sundays? Bugger all. Limited access to services, no post, and everyone starts mowing their lawn. I used to love it, but now… HISSSSSSSSS!
By contrast, Mondays mean you have better access to the world, in whatever limited capacity you get it. Now I love them.


4. Someone will say “I wish I could stay at home all the time.”

Someone will say this. It could be a stranger delivering something, it could be a medical professional, it could be a loved one, but someone WILL say it. And, for a split second, no matter how well you may know and/or love them, you will contemplate murder.


5. You feel voiceless and vulnerable.

Your entire existence becomes dependent on the goodwill and efficiency of others. If someone messes up, you’re the one who suffers for it, and you have very few viable options to fix it yourself, or to make sure it doesn’t happen again.
When you can’t leave your house it’s harder to make yourself heard, or to exact change in your life or the world, and that sucks.


6. You miss really strange things

I miss supermarkets. And train stations. And walking along in the autumn feeling the cold air on my legs.
All those really mundane, boring parts of life when you’re travelling or doing a chore you’d rather not do… you don’t realise how much of LIFE that makes up until it’s not there anymore. 
Photos of exotic locales on instagram don’t hold the same sway because those always feel like a snapshot of someone else’s life. I miss my life. I miss train stations.


7. Isolation

However boring and isolating you’d think it would be, times it by 1000. Again, you don’t realise how comforting seeing different faces is until you don’t anymore. Even if you never actually spoke to those people. I spend 95% of my time with the same three people, and one of those people is actually a cat. And as such she’s unconscious for a fair chunk of that time.
I’m lucky enough to see a friend or two once a month (or two, if I’m not doing to so well and need a break). Before, even if I didn’t get to socialise as much as I wanted to, I still saw people.
I can and have gone months without seeing another person outside my parents, and due to health constraints, not even seen them very much. Even on good days, they have things they need to do, especially if they want to keep me as healthy as possible.
I love Thursdays because our helper lady comes round. And I love getting post because then I can say hi to the postman. Sometimes there’s a new courier! Much excitement.


8. Distraction

Living like this pretty much comes down to being able to distract yourself. Through meditation, books, crafts, using social media, even daydreaming. There’s a weird guilt that comes with not doing anything you can perceive as productive (thanks for that one, Capitalism) but honestly it’s the only way to cope.


9. Support is paramount

It’s entirely possible people could do this on their own, but it would be so much more difficult. Without support and understanding it would be very easy to develop anxiety and depression and then have a whole new set of issues to deal with. (If those aren’t the issues that led to you being housebound in the first place.)
If you, or someone you know, is partially or completely housebound then I’d really recommend not only for friends and family to support them (or you), but for them (or you) to consider researching options for professional mental health support. I have two, plus the two medical professionals who focus on physical issues. There’s no shame in it, and if your body isn’t playing ball then your mind needs taking care of just as much. I see the mental health professionals far more often than the physical.
It’s not easy to deal with, so get people to help with it.


10. You appreciate things more

I kind of hate bringing it up, because really, what a crappy trade-off, but you do appreciate small things more. When I first felt grass on my feet for the first time in three years I cried, even though I'd only been wheeled 25m from my door. Standing briefly outside in the rain took on a whole new meaning once I’d been inside for so long.
However, that’s a personal thing. Please don’t tell people they’ll appreciate things more like they should be grateful for it. 
It is a very small thing to have gained when the price is freedom, so let them feel that when they feel it, tell you when they want to share it, and let them come to it in their own time.


11. You will laugh at people who are “Stir Crazy"

During an illness or an injury, or during the aforementioned period between Christmas and New Year, people will complain of being stir crazy. It is their right to do so. However, it is the right of any housebound person to laugh at them and think “oh, you sweet summer child."



(The cultural significance of GOT has passed 
now but sod it. Nothing explains the feeling better, 
and the passage of time is screwed for me anyway.)


12. People could do it

Most people will say they couldn’t manage being housebound, and they probably think it’s true. They’re wrong. They could. If they had to.
Humans are extremely adaptable. It’s a different normal, and honestly not a very desirable one, but people always underestimate how easy it is for things to become your new normal. It might be hard, and you might get angry and upset, you might need a really good support network, but you’d do it.



H

18 comments:

  1. Spot on! I'm sitting here laughing and crying, and reading little bits to my husband, and saying, 'Oh yes!' and 'Me too!' ~ especially the excitement of rain on my skin again! Thank you for sharing a life I recognise ~ it's good to feel seen and heard, even if it's only in reflection!

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  2. No more words needed.....5 years hbound..

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  3. Well said. I'm mostly housebound and I can normally see people once a week or fortnight inc my therapist. It makes such a difference to see strangers on the days I go out. I miss train stations too - but only as an able bodied experience, with my sensory issues I really do not like being there now. I miss the experience of being able bodied - the freedom, the way I couldn't feel my limits.

    I'm watching a stand up comedy right now and it's making me tired seeing the comedian walking around on stage. I can't remember what it's like to not feel tired from being upright.

    I don't have a family or carers to look after me, I'm doing this on my own with occasional arranged help from friends as needed. Been trying to get a PA for a year but not well enough to organise help to get it plus conduct interviews.

    Glad you have that support network :) I wish that you were able to see friends more.

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    1. Right there with you - another of those who have no help, either medical or social/domestic, and are doing this alone. It's an alternative reality, that's for sure. 'Normal' people have NO idea... But, astonishingly, it CAN be done; and, I am very slowly improving. Taking it easy/ being easy on yourself, not judging, listening very very carefully to one's body and brain and not trying to override them, ever, has been the key for me. Love to you and and all in the same (leaky) boat..

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  4. Great blog from another #housebound n almost #bedbound 10 yrs n counting Thank you for this xxx

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  5. Thank you Hannah, you always manage to nail exactly how we feel with CFS, the most misunderstood illness on the planet. To the ladies who commented above, I do hope for all of us some release from the incredible grip of CFS. I no longer look for "cures", but some degree of management that gives us some "frreedom". You mentioned time losing it's meaning, you're right. It's day/night, and sometimes forgetting what day it is. Like living in a parallel universe. Anyway muchos grasios for your terrific efforts with this blog.

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  6. You see parents? You have a helper? Support? You're lucky. I see my daughter 3 or 4 times a year, give or take. Apart from that I see the person who delivers my groceries roughly every ten days. That's it. But yes, if you have to, you can do it.

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  7. Wonderfully written! I am not housebound now but have been for extended periods over the last couple of decades or so. You have my sympathy and admiration.
    Jody

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  8. Very well written. I have ME but am only housebound on bad days and rest days; I am fortunate to be able to get out for short periods, providing I rest enough before and after. I certainly appreciate the little things far more than I ever did when I was well. Life slows down, time loses meaning as you say but I'm thankful it hasn't made me completely house bound yet.

    Wishing you more of those moments with the grass under your feet.

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  9. Very well put. I have been bedbound in the past and housebound for a couple of stretches. Now I seem normal until I am confronted with something on my list of can't-do's. I have limits and things I must avoid which must look arbitrary and odd. Then I struggle with shame.

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  10. "I wish I could stay home all the time!" Really? "Could"? Or "had to"?
    Do you wish you could stay at home instead of taking that coffee with your friend you didn't see in ages? Stay home rather than see that new favourite actor's movie in the cinema? Rather than attend your child's birthday party/graduation/wedding? Or instead of going to the parade/festival/big event that all your friends and family are going to? Or just being able to nip down to the store for toilet paper or just a chocolate?

    Do you really wish to stay home instead or having a life?

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  11. Perfectly written, and a reflection of much of my life. Thank you for sharing, it helps to know I have kindred spirits out there!

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  12. Great blog - thank you. It has made me feel truly grateful. My ME diagnosis is very recent - 27th December. But it took 2 years to get there. I'm only housebound on really bad days, and have only been bedbound twice, for a week both times. I'm lucky, really lucky. I have been shocked how little support and advice is available from medical professionals. I quickly realised the best advice comes from people with ME. That's how I found out about pacing. This is really early days for me, but I'm already managing much better. I have had to change the way I live my life, but that's OK because it means I CAN still live it. It is heartbreaking to see how many of you are trapped in your own homes. You are all brave and magnificent. I am humbled.

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  13. You said it, sister. I have hEDS, but that didn't keep me housebound. I struggled through. Then, I was in a very serious rear-end collision, hit at 45 mph (I don't know kph without looking at my speedometer) at a dead stop. I was injured, but I'm alive thanks to my seat belt and EDS. I "bent" with the accident. Anyway, the accident's sequelae forced me to retire. When I was just recuperating, I was too busy hurting to care. Now, I feel it. I feel the lack of time placement affects me a lot. I get out at least once a week and it helps.

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