Getting out of bed and getting going - Fibromyalgia Acti...

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Getting out of bed and getting going

Fourboys profile image
26 Replies

Does anyone have problems with not wanting to get out of bed to face the day?

I don't sleep at all well and think about all the things I will do when I get up, but morning comes and I just cannot get out of bed because of pain and exhaustion. I'm so frustrated and feel a burden and very guilty. My OH does not show any empathy or understanding of my many health issues.

I wondered if I went to hypnotherapist it might help.

It's like having agoraphobia and only feel safe in bed, it's so hard to explain.

Please if someone out there also suffers with this problem any offer of advice would be greatly appreciated.

I can't go on any longer wasting my life like this, my dr is not at all helpful, just said go to bed earlier lol, as if I haven't tried that. Everyone thinks I'm lazy but honestly truthfully I am definitely not lazy, but frustrated as health issues limit me to what I can do xx

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Fourboys
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26 Replies
Fibrofoggiest profile image
Fibrofoggiest

Hi Fourboys, we must be twins, I find it really difficult to get up and get going. When I'm in my bed with my doglets tucked beside me I'm ok, then I have to start loosening everything up to get moving, which can take ages, sometimes I give up for a while and come and post on here, then go back to the task of getting up. Certainly during the winter it is worse, the urge just to hibernate and go nowhere and do nothing is very tempting, but then I feel I'm just wishing my life away. Like you I don't sleep well and I think that must have something to do with it. I can certainly empathise with your feeling of feeling at your safest in bed, I often say, I'm off to my eyrie.

I live alone, so apart from the dogs, I don't have anyone chasing me to get up, sometime I wish there was, but a lot of the time I just want to be enveloped by the comfort and safety of my bed. I know that may sound silly to others, but I have he feeling you might just understanding this.

I'm sending lots of positive healing vibes your way :-)

Foggy x

Fourboys profile image
Fourboys in reply to Fibrofoggiest

Foggy, thank you for replying, I completely understand. At least you have the unconditional love of your dogs and I expect you have to get up for them. I would love a dog but my OH says I wouldn't be able to cope as I spend too much time in bed, but I know a dog would give me a purpose as unfortunately my OH is controlling and does not communicate which makes it even harder to leave the comfort and safety as you say of my bed.

I adore dogs and have always had them until my last retriever passed away a couple of years ago at 17. I miss her daily as she was my comfort, yes I do understand you totally, enjoy the rest of the days with your four legged friends xx

I can certainly relate to this. I don`t have the choice though. My hubby would quite happily let me stay, but my restless legs and toilet needs are not so obliging sue

Fourboys profile image
Fourboys in reply to

I get up to go to toilet but just give a sigh of relief when I'm back In bed. Unfortunately my OH calls me lazy :( xx

in reply to Fourboys

I think that having my bathroom down stairs makes a big difference. My leg muscles are so painful and stiff first thing of a morning that the stairs look like mount everest.... :)

flossy1 profile image
flossy1

Hi, I totally relate to you all not wanting to get up. My bed is so cosy so I snuggle up with the dogs for a minute and then fall asleep. Hubby comes and wakes me with a cuppa but no that doesn't work and its usually cold when I wake. Yuk! Then when I finally get up I look at myself in the mirror ... well you can imagine!!!!!!! It's not a good look. Panic, panic hope no one rings the door bell. Will hide in the bathroom. Promise myself every day to change, but at least I'm consistent. X flossy

Aisha profile image
Aisha in reply to flossy1

Hi, I can totally relate to you all and so pleased that I am not the only one that feels this way! My OH works and lives in London so only visits every few weeks but he is very understanding to my health problems.. Some days I find it difficult to lay in bed too long as I become stiff and in a lot of pain so I have to get up, but other times I can just stay in bed all day and sometimes I feel frightened to go out and wonder if I'm suffering from Agoraphobia I use too love going out shopping etc but since losing my job last year, I just like the safety of my own home and my bed, if it wasn't for the fact that I have Appointments to go too I wouldn't go out. I have loads of things to do on doors but everything os an effort now and I never felt like that before, not till Fibro came into my life! I even get very angry which I was never like that before!! Love Aisha x

I have started to get very fond of my bed and am getting up later and later and if I am not going out will often go back for an hour or two. I love when my dog snuggles in behind my leg.

I have been worried lately that when I have to go somewhere on my own I don't really want to even if it's just the shops. I love days when I walk my little dog early and then shut the door and be on my own for the day as my hubby works long hours.

It is different when he is around on days off, or if my daughter or son call around to bring me somewhere, although I sometimes feel just a little too excited to be going home to my sofa and my dog!

Maybe it is just the weather, but I also find everyday I do stuff has to be followed by a day when I do nothing.

The only thing I do worry about is that I am getting too fond of my own company ;)

Jackieblu profile image
Jackieblu

Hi Fourboys. That's me down to a t,I absolutely hate hate hate gettin up,I groan when I see the time in the mornin/afternoon and then the guilt sets in I think this is terrible ur wastin ur life away but then it ain't easy with the pain of Fibro,arthritis and sleep problems! It's a battle every day unless I've got somethin I really need to be up for like my daughter and granddaughter comin up,or posties due,or anythin hubby needs me to do for him as he's up real early! I feel I'm constantly questioning myself all the time as I was such a busy working mum and now my life is totally changed! That's Fibro for it tho it messes with every aspect of our lives! So Fourboys if everyone is goin to judge you,tell them to back off you don't need it,it's happening with all of us fibro mites! Best Wishes Jackiex

Ugh, mornings! I try to avoid them if I can.

Unfortunately, with having small children that need to go to school, I find it's very hard to avoid them during the school week!! So I set my alarm for 6.15 and have it on snooze every 6 minutes til I get up at around 6.40, stretching and trying to warm up my joints and straightening my back and neck to make it easier to move, then the first thing I do is go to a nice hot shower. I simply can not function without a hot hot shower in the mornings.

Once I'm showered I wake the kids then I go back to bed for 15 minutes or so, and stretch my neck and back out again. If I don't do the hot shower and the stretching it's too painful to move so it's a necessity for me.

Sometimes after dropping the kids at school I will come home and head straight back to bed and have my alarm set for 2.30 so I can get up in time to collect them. That way I feel I can be better rested and able to be a better mama when they're home.

At weekends and holidays, unless we're all heading out somewhere, I tend to stay in bed until late morning or the early afternoon. The kids go to my hubby if they want help with anything, and he will usually get up and leave me sleeping while he gets breakfast and sometimes lunch too for the kids.

He's brilliant, I'm so lucky to have him. I'm so grateful he never calls me lazy, but rather, he understands I just don't function as well as other people do in the mornings, and he understands I do the best I can when I'm able.

My bed is my sanctuary, and I totally get what you mean, it's my safe place, my comfort zone. My favourite days are the days I get to stay there as long as I like, and my kids come in for snuggles and cuddles and "footwarming" as needed.

I'm so sorry your partner isn't supportive and encouraging for you, I can only imagine how much harder that must make things for you, day to day. Might it help to have him come to some appointments with you, to get answers that he needs from sympathetic professionals? It may make him more aware of what you're facing every day. I know my husband was a lot less supportive before he read up on my conditions.

Hi fourboys,

I feel exactly the same way as you do about the mornings. It takes me about 2 hours to get going in the morning, and left to my own devices, there would definitely be days where I wouldn't get up, and the dog would join me for a snugglefest. I am living with my parents since I had to stop work with Fibro, and much like your partner, they don't sympathise with me at all. I've tried to gently tell them that I'm not being lazy, and go through the symptoms and effects of Fibro but they don't listen, to them I'm a bit achey, like anyone else who hasn't exercised for a while, and am feeling a bit bleary after a mildly unsettled night. It makes me want to scream, and go back to bed even more.

Anyway, I've finally persuaded my mum to read the Fibroaction.org webpage tonight so I'm hopeful understanding for my love of bed is on the way...maybe for you too?

XxxAlexXx

TheAuthor profile image
TheAuthor

Hi Fourboys

I sincerely hope that you are feeling as well as can be? I can also relate to this and I have to admit that getting up in the morning is a real chore.

I am a firm believer that most of us Fibro sufferers feel like this a lot of the time. I am pretty sure if a GP were to read these posts they would prescribe us all antidepressants and tell us it is depression. However, I know many of us are depressed but I truly believe that this is par of the course with Fibro.

I am not sure about seeing a hypnotherapist I must admit. There really are genuine one's out there but I am sure that there are more charlatans than professionals. It may be more advantageous talking to your GP about counselling as this can look at the root of the problem which is obviously your Fibro. If your GP is not understanding of your illness then maybe you could try and see a different GP? If your GP will not refer you for counselling, then most major towns and cities tend to have a low cost charity counselling service.

The Samaritans can usually advise you on this, I have copied their phone number here: 08457 90 90 90 - Also, if you have a local Women's Centre where you live they also undertake low cost counselling for women.

I couldn't help but notice that you wrote 'everybody thinks that you are lazy'. Well, nobody on this forum think this! I was wondering who in your life has told you that you are lazy? And how have you responded to them? I ask this as you also said that 'you feel a burden and very guilty'. I think sometimes in our lives that we behave in a way that gives others permission to judge us, and I genuinely believe that we should take away that power from them and judge ourselves (taking our illness into account) and understand the very nature of who and what we are!

If you ever want to PM to talk privately please feel free and I will always read and reply to your mail.

All my hopes and dreams for you.

Ken x

PS You asked me in another post how do you send a private mail, I have explained this for you in that post.

Aura1 profile image
Aura1

Hi everyone .. Good answers for fourboys . I feel the same , safe in my bed and comfortable as I can get, if I have to go out i wake thinking only few Hours And i can go back to bed. everyday is a challege . I am a list writer .... I have an ongoing list of things I need or would like to do . Even if I only manage one in a day I have achieved... To cross off more than one gives me a good feeling . May only be do the washing or make phone call .

Ken i love your statement ...we should take away there power and judge ourselves ..... With you all the way with that .. If people thi k I am lazy let them their problem not mine because I know I am not lazy but have a chroic illness ...

Warm hugs and pma for everyone today ...

denvajade profile image
denvajade

hi there Bluebell I think not wanting to answer phone or door is because we are physically and emotionally exhausted, the peace and quiet is easier for us to cope?????????????????? wishing you well

bluebell10 profile image
bluebell10

hi fourboys,i feel for u no, you are not lazy,you do need help though,is there any chance you can see a differenr g,p or even change, ive just done it & i feel happy now ive taken the plunge to do it. it took me a long time, if you have any other gps near you go on n.h.s. website,i just typed in gp surgeries in........ & then type in yr post cost & they will all pop up. it gives you ratings & reviews etc it's a very good site. also yes i did feel like you & just didn't want to face the day but to be honest i think you really have to force yourself..& yes i did feel useless & lazy myself but im very lucky to have an understanding husband,it does take a long time to get thru to some people tho even now & yes i do still feel lazy but it is very hard to realise & come to terms with the fact of not been able to do everything you used to do. i found this site a magnificent amount of help & i would hate to be without it now, but please have a look for another g.p. take the plunge,& i hope you're feeling better soon, :) xx

angelicscripts profile image
angelicscripts

Feel so much better after reading your comments

That am not the only one who's get up n gone has gone

Had a beautiful dobermann but after many yes of happininess he brought me

He finally had to leave to run amongst pastures new.…..

He was my get up n go ! Know matter what I was experiencing health wise he was the push I needed!!

Dogs are a great source of comfort for those who are in a great deal of pain every second of the day/night...

bluebell10 profile image
bluebell10

hi bluebell, yes i agree i think it's all part of fibro,i feel the same way i would love to turn rhe clock back to the days when i was dashing about all the time juggling 5 kids,housework shopping & i had no car, then work at 6/11.30, i had to do it on my own most of the time as my hubbie used to get up for work at 5 then walk thru the door at 5.30 i literally used to hand over the baby & go! now we've been on our own for 4 yrs now it took a long time to get used to & at times was very depressing but life goes on... but no don't give up your car,i havn't had a car for a few yrs now as i had a manual & found it caused too much pain but do i miss it..i would love a little auto so i could get out more x

Milynda profile image
Milynda

I have the same problem. It takes about 45 minutes for me to get psyched up enough to get up and get my joints oiled up. Another 30 to take meds and get moving. Another 30 to take a shower and another 40 to get dressed. Then it is afternoon. :)

suwie profile image
suwie

Im like that most days but I do eork do I give myself time to get ready I only work 1hr a day as a dinner lady and thats enuff for me I go to bed as early as I can but cant sleep I have other health probs too think I suffer with that sad too I hibernate in the winter although I did go out valentines night for a coupke hours for a meal but by 9pm I needed my bed so your not on your own im just trying to get mysekf together to go to town for fresh air hope you get a better nights sleep soon x

slomotion profile image
slomotion

Hi, I have the most awful feeling of dread when I wake. As I live alone I have to get up - I care for myself which I think is an advantage. The way I get over this feeling is to think 'this is a waste of time, time I will never have again, time I could be doing something positive'. Its hard VERY HARD to get this state of mind especially if sleep has been fleeting and pain and exhaustion are there at the beginning of the day. Its best to prepare the night before. I have a plan A,B and C. A is what I want to do, B is what I can realistically do, C is take it easy and dont beat myself up because I am to exhausted and painful to do much. When I started to to this I was pleasantly surprised at how often I could manage A. Begin by forcing yourself out of bed - bed is the enemy in the morning, rid yourself of it and dont go back until the afternoon and then only for a timed nap (use a timer). Its not easy but try and never ever give up.

somotion.

Hi, I can absolutely relate to this too. Also since I lost my husband 14 months ago I feel like I have no reason to get out of bed...I can honestly say there are lots of days when I feel so sorry for myself its embarrassing. I am sure my neighbours think I am lazy too when the curtains are closed a lot of the time. I am not lazy either just struggling. Hugs xx

sue32 profile image
sue32

Ho ho!!!!! This could well be me writing fourboys!!! I'm a widow and I live alone and, oh, the temptation to stay in bed permanently!!!! I just feel constantly tired, I had vertigo a few months back and I think I slept for 2 days straight!! As soon as I can mange to drag myself to sitting position my back starts with crushing pain, then I have to struggle to the loo, most days I stay in my PJs, if I'm not going out. So you're not alone my dear and I think that whatever you need to do to make your life easier and better, then do it!!!!!! Look after No 1!! That's my motto....cos no one else will do it!! XXXXXXX

fenbadger profile image
fenbadger

wow. What a response! You don't mention your medication though that's not always the cause. Even before I started on Amitriptyline I had trouble getting up. And not just because I like my bed -which is true. Falling asleep halfway out is a pain. Some treatments cause drowsiness - with the warning about operating machinery. I seem to get a kind of hangover. One employer wants me to start work later but I know that would not leave enough time before the next session. I'm still experimenting with meds and will suggest something else when I meet GP.

I'm not sure if it's insomnia or plain fatigue that makes it hard.

I'd love another pooch (JRT) but I don't have the energy to do my duties or enough dogsitters for when I'm out of action They keep dying on me. How inconsiderate. - and I'm sure work would look askance at such a thing along the lines "if you have the energy for that, you have enough for work". I'm scaling back activities all the time and foresee that time when I'll be pretty well out of it.

Reading that back it looks a bit too "ME". Sorry, It's meant to reassure you. You are far from alone and should not feel bad about it. It really is perfectly normal for fibromites to be like this. Of course you feel safer or perhaps more secure in bed largely because you are. I agree with the point about showing other people these posts. It's universally true if you don't suffer yourself you have no idea. I'm quite envious of ukwahine :O :O

Shazzzy profile image
Shazzzy

I'm very sorry to here your oh is so unsupportive of you. I used to have a partner like that but left because his comments and behaviour made my health even worse. We have been apart for years but he is now much more understanding and even helpful ! I too have problem of getting up and leaving my bed. Too me it is my safe place and getting out of the house is getting harder and harder. I believe it will improve with spring time, as every year winter is a struggle, it just seems every year it gets that little bit harder to deal with and I am only 50, what happens if i make it to old age?

Fourboys profile image
Fourboys

Thank you all so very very much for the huge response on my posting about getting out of bed.

I now don't feel so alone knowing how many of you have the same issues, it's a nightmare.

I can't express the amount of appreciation I feel for you all taking the time to respond, I thank you all and wish each and everyone of you better days ahead xx

fenbadger profile image
fenbadger in reply to Fourboys

It's funny. . Just had a long conversation with works doctor about getting started In the moaning. Sometimes I feel like a MKI VW beetle - you ever hear one of them with the choke out?

What I'm trying to say is it seems quite common and nowt to worry about, you have plenty else on your plate :)

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