What's wrong with staying in bed?

I’ve had MS for 18 years, and reached the point two years ago, of not getting up, not getting dressed and not going out.

It’s wonderful!

I have NO energy for going out. Struggling with a wheelchair or trying to find the nearest loo…so I stay in bed all day long -much to the horror of my GP and my new MS Nurse, who have made appointments for me to see an OT and the Community Rehab Team.

I don’t want to see them! To me there seems to be no point in doing exercises for a month or so - and then having another relapse and being back to square one.

Why bother with rehab when I am happy to just stay in bed? I think perhaps doctors have unrealistic expectations of patients who have to deal with MS 24/7.

From my perspective life is now great - easy - worth living - without all the fuss and difficulty of going out.

Do you feel the same?

Absolutely not - I couldn’t be more different. Even during the weekend or on holidays, I could not stay in bed all day. NOt Even when I’m having a bad few days - I will always try to do something. Your body has muscle memory - even if you have to give up your exercises for a few weeks, you will find your body will remember when you start again.

There are people on this forum who would love to have the choice of staying in bed or getting up but they can’t cause they truly are bed bound.

Have you considered that you might be suffering from depression? Soon you might find you have no choice but to stay in bed and that might not be quite so wonderful

JBK

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I think i know what you mean.My MS is very bad and i can hardly do much at all now and i have had to adjust to a life indoors,nearly all the time now,before it got bad i was very.very active always out and about.Its been a gradual thing for me, as i could do less and less i adapted,i had to either do that or get depressed.

Even though i spend a lot of the time resting i still make myself get up and washed and dressed every day and do what i can,which isnt much but it keeps me sane.

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Do I feel the same? Well, no, but I’m not you. And my MS does not (fingers crossed) hamper me as much as yours obviously does.

Of course a person’s decision to retire to bed is going to give healthcare people the bends - it is so terribly unfashionable in a world in which busy, busy striving for good health and an ‘onwards and upwards’ approach to managing illness is so mainstream as to be practically obligatory. By saying saying ‘sod it, I’m taking to my bed and that’s an end of it’, you are transgressing a social norm; that tends to make people feel uncomfortable, huffy and officious. We transgress the invisible rules of ‘acceptable’ ways of living at our peril! This is quite apart from the fact that your medical advisors will be fretting about your mental health (they’ll think that if you have taken to your bed, you must be mad) and also about the deleterious impact on your general health.

Good for you, though, living life your own way.

Alison

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hi PJ

i love my bed because it s the only place where the noise and chatter of other people doesn’t take over.

but if i ever sleep for more than 8 hours my poor old carcass gets stiff as a board.

what i need to do is look up my old friends and arrange to meet for coffee.

carole x

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Nothing wrong with staying in bed all day it is your choice nobody can say you must get up, I know it wouldn’t be for me and that’s my choice ,doctor etc are bound to be worried because it’s not the normal thing too do and perhaps feel as I do you could be getting so much more from life , just some fresh air and change of scenery can do you the world of good and improve your outlook .

I hope you genuinely are happy with your choice not just thinking so because it is the easy option.

Take care .Katy

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Wouldn’t be for me either. I’d be concerned of developing a clot plus there is the need for some movement to keep my bowels chugging along! :slight_smile:

Where do you get your meals from?

O/T a bit – I had a great aunt who ‘took to her bed’ when she was in her late 70’s and stayed there until she died. I think this wasn’t uncommon in the 1930’s and 40’s.

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Does ‘PJday’ stand for pyjamas day?

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What an excellent answer Alison.

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I completely get the point of staying in bed all day everyday.

Years ago a friend of mine told me that what would suit me would be a general malaise of an illness rather like Elizabetg Barrett Browning; she used to lay around on a sofa, reading, writing (a bit highbrow but still) poetry and corresponding with literary figures of the day, one of whom was Robert Browning who she eventually ran off with to Italy, where they married and where she then succumbed to consumption. In the ancient film of her life, her father used to make her drink glasses of Porter, which I always thought was a marvellous thing.

I’ve often said that perhaps the best illness I could possibly have had is MS. It allows me the freedom to sit about (on my ever expanding backside) read books, correspond with some of the great minds of the day (ie you lot!!!), eat fruit pastilles and be generally reasonably well cared for my my lovely husband. Obviously I’m not by any stretch of the imagination suggesting that I deserved this crappy disability, or in fact the bloody disease. And actually I do leave the house on occasion and do more than just lie on a sofa eating Quality Street and drinking wine.

But when Krakowian asks who feeds you, that is a good point. I presume you have someone generally providing care, after all, sooner or later, surely most people feel the need to change their PJs or sheets. And someone presumably provides your meals and helps out with other needs. Do you live with a partner or someone else who does the caring? What does that person think? Are they happy with your current way of living? Does that matter?

I suppose that outsiders think that taking to your bed means you are clinically depressed, but do you? Are you asking what the members of this forum think because you want us to agree with you or disagree? Does that matter in any way?

Personally, I think if you can manage your life in this way, have sufficient care and aren’t causing harm or material damage to anyone else (ie the people who care for you and / or love you), then good luck with it.

Sue

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Where I come from, a domestic tyrant wearing a face like thunder that indicates squalls ahead is said to ‘look like Elizabeth Barrett’s dad’. Maybe he was sweeter-tempered in the film.

A

x

I do not agree with the ideals of the original poster. But that is not to say i would wish to deter them from pursuing them.

I subscribe to the notion that life is meant to be a struggle. It is simple, human nature to want to fight for more. It’s why a capitalistic and materialistic world has grown to such a global extent across all cultural divides. In cave dwelling times, humanoids would fight for food, shelter, mating partners and to avoid predation. Nowadays such is less and so we look to crap like the latest iPhone etc instead. But the same underlying urge remains.

This urge is motivated by the greatest, most pervasive, natural instinct: to please oneself. We are inherently selfish.

And so who cares what others think? If you want to spend forever in bed, then do so. For me, i would (selfishly) suggest that this is one degree removed from killing yourself (the ultimate in opting out)… but hey, life ain’t for everyone.

It all comes down to perspective.

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‘Meant’? By whom? By God, I suppose - ‘all sent to test’ and all that? But if one does not subscribe to the God idea, then the force through which a certain mode of living establishes itself as ‘meant’ (even when one is lucky enough to have enough to eat and a roof over one’s head) is surely entirely self-(human) generated?

Indeed - ‘Getting and spending, we lay waste our powers,’ as the poet says. But surely that is an argument FOR saying ‘no, thanks’ to the headlong dash for more, more, more (just as the PJday seems inclined to do). Or do you think that PJday should feel ‘meant’ to harness him/herself to the yoke like the rest of us striving human hamsters? Is it somehow a bit of an unsettling snub to the rest of us when someone says ‘no thanks - not for me’?

I do love posts like the PJday’s that get us all really thinking about what is OK, what is not, and (most particularly) why we think so and where on earth do our views come from… Thank you, PJday! smiley

Alison

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Oh yes, thank you PJday.

But thank you even more Alison.

You’ve managed to harness a whole range of thoughts, questions and arguments. And very neatly, question them still further.

You’ve also reinforced the notion that a person has every right to choose to opt out, just as many (most?) choose, or believe they have no choice, to opt in, by default if not by active intent.

I applaud the notion that to have choice in whether to engage in mainstream life is a great thing, so long as by such choice we are not forcing our choice onto other people, or damaging another person by such a lifestyle.

Sue

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I stumble about on a walking stick, which probably means I’m more mobile than you PJ but, the idea of giving up (staying in bed) no I couldn’t do that. Sorry PJ not much help am I.

David

.

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Bed is for sleeping and having sex lol…and a smoke afterwards

I hate my bed. Just staying in it for about 2 hours as i wake up early is enough to make me cry. It makes my spasms worse once i wake up, i get more cramp and my back aches.

I have found the perfect solution to balance. A recliner chair lol.

I get up at latest 7am, go get my girls out my bantams, and I potter and do things, to keep my legs moving and system working. I take my poochie out for her work (i scooter she walks), then from about 11am latest i recline, with my laptop on its stand, have my coffee and gluten cake and just chill for a few hours. then its check my bantams, lunch/dinner walk about, rest until 4.30, dog out on scooter again, bantams fed then by latest 6pm bed more just to get away from irritating husband and the noise.

I do understand what the original poster means though. I went out for lunch with my sister on Wednesday and yesterday omg i hurt so much i felt sick. My spasms, my cramp the fatigue were overwhelming so yesterday was a really bad day, and I can feel it to some extent today.

BUT if i stayed in bed all day i would be giving up, and i am not about to do that, i still have some life, and i dont mind having a few days worse just to get out.

Nah i hate my bed. But i do get where they are coming from.

I am with you there David. x I have more of a fear of getting a blood clot and ending up in worse state, so thats another reason why i am up and about.

Reminds me of the John Lennon and Yoko Ono protest against wars , but a protest against m.s.

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Mmmmm, an interesting thread and such an array of answers/thoughts!

Of course we can all do what we feel like doing if we have the finances covered.

No-one mentioned this in their reply.

To stay at home,and/or in bed, we need to have our rent/mortgage paid (unless we live rent/mortgage free), our electricity, gas, water bills etc paid. So I guess PJ, that you`ve got all this sorted.

I often think how life can be directed from inside one`s home.

You could do internet/telephone banking, have food delivered, shop on line, visitors calling on you, etc.

No, you need never go out…ah, but what about medical appointments? I have more telephone appointments with my GP than face to face ones. You couldnt get your neuro or uro, to come to your home…unless in very unusual circumstances.

My dentist visits me annually at home, as his premises are inaccessible. Fortunately, I never need anything doing.

I enjoy the occassional day in bed. My bedroom has a conservatory leading off it, so I am able to enjoy my garden and my little dog runs in and out as she pleases.

My meals are made for me by my hubby or carers. This happens whether I`m in bed or not.

I do love getting to bed every evening…or earlier if I am uncomfortable. I need to stretch out, as I have an spc to accommodate. Being squished up all day in my wheelchair or even recliner, doesnt give me the relief my bed does.

It may be against our medical bods advice, to remain in bed, to receive no sun nor fresh air on your face, never to speak fce to face with another person, but I can see why it would suit some. So PJ, if it suits you then carry on regardless!

I`ve suddenly got a deja vue feeling…have we discussed this topic before?

pollx