cant cope anymore

Well as the title says I cant cope with this life anymore. I dont want to carry on like this. Yes I have fibro and expect to get tired but this is unreal. I get up after a bad night sleep get daughter off to school then I have to have a sit down and I am nodding off I am so tired. I dont sleep because my body twitches and jumps. I get up to try and shake the tiredness off but I feel dreadful and just want to sleep.

I dread my daughter coming home from school as that means I have to sort her dinner out . She does help bless her and I love her to pieces and I feel dreadful for thinking like that.

I have the pain from fibro on top of that I have this pain from gallstones(maybe) and my depression is getting worse again and I ad only just got it undercontrol.

How am I meant to cope didnt realise I would be this tired.

I volunteer with homestart and I am suppose to go to see a young mum in the morning to support her ( not that she wants me there she only doing it to keep s.s . off her back) I dont want to let her or homestart down.

I cant cope , it hurts to do the housework the garden is a right mess and the grass needs cutting ( at least the rain prevents me doing that at the mo lol).

My family are no help even tho both of my sisters have fibro they hold down fulltime jobs have a good social life (one sister is out dancing most nights) and think I should be able to do the same. So I just dont tell them they make me feel lazy or I am using it as an excuse to not do anything.

My daughters dad is 200 miles away so not like she can just go for the weekend.

I am really hoping they find something on friday when I go for my scan and then they can sort out surgery for me I might get a proper sleep from the anithetic

Sorry for the rant and I dont even know if any of this make sense.Just thought writing it down would help hope others are having a better day

xx Penny xx

29 Replies

oldestnewest
  • hi , i have just been diagnosed and my sleep is awfull , i am so exausted and cant sleep at all . you sound as though you have a wonderfull daughter . i dont know how your sister dances every night i can hardly walk with it . dont feel guilty.

  • thank you rosehip, My daughter is lovely but she is very self centred bless her she is only 11 and doesnt really understand. Its hrd work getting her to do anything lol xx

  • Have you spoken to your GP about how bad your sleep is at the moment? Treating the lack of restorative sleep that is a core symptom of Fibro should be a priority with treatment. If you can't sleep properly, no one can cope long-term, Fibro or not!

  • Hi Lindsey,

    The dr I usually see is on hols this week but I am speaking to her monday morning so I will tell her then. I do need to get some proper sleep as you say if we dont then nobody copes well

    thank you for your comment xxx

  • so so sorry u feel so bad..if its any consolation ive had an awful day 2...no sleep coz of fibro pain and spine pain...totally shattered..had phiso at 830..it nearly killed me gettin ready 2 go!!!stayed on couch all day..had 2 cancel c in a friend..jus wasnt well enough...ll i can say is try 2 b strong..i know its not easy but i always try 2 focus on people worse than myself...i know that sounds cheesy but its true.... just do ur best wen u can... i couldnt have children(long story...nearly died in the process)so try2 enjoy ur daughter wen ur well enough...jus let her know u luv her and try 2 make her understand this awful thing we have...ur not alone hun...hope u have a better day 2 mo..sendin u hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxx

  • It is awful isnt it when we feel this bad, yes there are people alot worse off and at least fibro is not an illness that will take my life like some.

    I am sorry you couldnt have childrren my heart goes out to you, and theres me complaining about my daughter,

    Yjank you for your comment it is nice to know I am not alone and that others understand

    I hope you have a better day tomorrow too hun

    hugs

    Penny xx

  • question.....why are you volunteering to help someone else, when you badly need help yourself?

    I think this is the time to bring things closer to home. Its good to help someone else, but not at the expense of your own health. Maybe they could give you some help now, since you have volunteered and help others.

    Why compare yourself to your sisters? The obviously don't have it as badly as you do, so why think you should measure yourself against someone who doesnt have the level of disability you do?

    I dont mean to sound tough, but stop thinking you have to measure up to other people. Just measure up to yourself, thats all you need to do

    Love and hugs to you

  • What you said is very true I need to think of me and stop trying to be like my sisters, tho I always have. As for the volunteering its the thing about not feeling I can say NO but I cant carry on it is stressing me out to much.

    I will just look after myself and do what i need to do to keep myself on an even keel hopefully

    thank you and hugs to you too xxx

  • Penny I do know how you feel as well as Fibro I have M.E. and other things, I am soooo tired I cannot believe it and if I do something I sit down and end up nodding off and if I don't nod off it gets to the afternoon and I often get into bed for half an hour and it ends up sometimes 3 hours, but I also sleep at night but it is not good sleep it's like knocked out sleep, everyone suffers differently with Fibro but I really don't know how your sisters dance etc and with regards not daying NO as a person with a chronic illness you must learn to say " NO".

    Please keep warm and take care

    Be yourself

    Gentle hugs,

    Sue x x x

  • Thank you Sue, I really dont know how my sister can have fibro and dance every night and weekend

    I have decided not to go tomorrow I need to look after myself and if I fall apart then Maddie will suffer too so I am going to say NO

    soft hugs

    Penny xx

  • Excellent Penny you are learning say NO and don't feel guilty.

    Do your sisters live near?

    Just a thought depending on when your good time is during the day, could you prepare your and Maddies dinner then?

    Soft hugs

    Sue x x x

  • Hi Sue, I might feel abit guilty but I will get over that

    My sister do live in Nottingham

    Yes I will try and prepare most of dinner when I feel abit better during the day it would be easier

    thank you

    hugs

    Penny xx

  • Hi Jules and thank you for your comments,

    As you say being 11 they dont understand the illness

    My family are not very helpful because they can cope with their fibro (which I must say must be very mild concidering what they can do) they think I should be able to cope they make me feel worse so at the moment i will manage without them.

    Yes I am struggling and I will be speaking to my dr on monday so I will tel her about my depression and not sleeping well.

    I just hope they find something on fri or its another wait for an endoscopy

    I will keep intouch

    it is great to be able to talk to others who understand

    soft hugs

    Penny xxxx

  • hi i have nort been sleeping for weeks and i have been to gp there is nt alot they can do really i jus think it is a cycle i am going through and it will come around ahgain i have never been one for alot of sleep anyway but we are not all the same so see your gp and hope fully he can give you tablets to help i have had them but my body sems to say no i aint falling for that one lol and i still dont sleep the amount of meds i am on you would think i would be sleep walking lol but we are different as i have sai d good luck though im get very frustrated 4/5 hours would do me but it 2/3 at min and it takes it s toll after a while love diddle x

  • hi i have nort been sleeping for weeks and i have been to gp there is nt alot they can do really i jus think it is a cycle i am going through and it will come around ahgain i have never been one for alot of sleep anyway but we are not all the same so see your gp and hope fully he can give you tablets to help i have had them but my body sems to say no i aint falling for that one lol and i still dont sleep the amount of meds i am on you would think i would be sleep walking lol but we are different as i have sai d good luck though im get very frustrated 4/5 hours would do me but it 2/3 at min and it takes it s toll after a while love diddle x

  • Hi diddle, It is terrible the lack of sleep isnt it. I have had sleeping tablets before but they dont help but I will speak to gp on monday.I have a long list for her lol She is great tho . I am sorry to hear you only get 2/3 hrs sleep so draining. I hope this cycle of sleep gets better for you soon hun

    take care

    soft hugs

    Penny xxx

  • Hi fairlady, It's sad reading your comments, I can relate to them so much! I only sleep intermitiently, if I can string more than 2 hrs together, I think I've done well! This has been going on for years, you get in a cycle of being awake 1-4am & just feel weary all the time. I start off asleep on the sofa, wake in pain & then depending how bad it is either go upstairs to bed, or take some painkillers & stay where I am. I've spent the last 3 nights on the sofa! I love my family dearly but they have no real idea of what we go through, it's all "invisable" pain, if I had a scar or crutches I'm sure they would be more sympathetic. DON'T feel guilty putting yourself first, this is not being selfish, but is sensible. Take care, gentle hugs, TheShadow xx

  • Thank you shadow, sometimes I wish it was something people can see as you say we would get more understanding. And saying you are tired doesnt mean anything to them all I get is ' I am tired aswel' wouldnt it be great if they just had one day of feeling just how tired and in pain we are so that they could understand

    soft hugs Penny xx

  • I wish there was a "transfer all feelings & pain for an hour" machine, we could not only use it on family & friends, but also doctors! That would surely make them more helpful, especially if there was a repeat transfer button we could press!!! Ah well......dream on! lol xx

  • ooo I love the idea of this. I can think of a few people I would like to transfer this onto if just for a short time. The temptation would be to sellotape the repeat button down though lol

  • lol thats really funny and so true haha x

  • I really did LOL at this, but think superglue would be much better!!!

  • oh thats a brilliant idea. Think I've got a tube somewhere.....

  • Penny I so understand how you feel. The part when you say you dread your Daughter coming home I understand so well. My Son still lives at home he is 23!! That is just how I feel. He as just gone to work and will be home late, so I put a casserole or something similar, stick everything in one dish meat veg potatoes cook slow for 3 to 4 hours easy. You could have a sleep in between.

    I have stages of fatigue 1) Can't sleep but exhausted lie in bed toss and turn but too exhausted to sit need to lie down 2) Sleep all day then all night no problem too tired to keep awake. 3) The one I am experiencing now, tired just don't feel awake?? Can function slightly but don't feel fully awake like a drugged state. This is the feeling as I describe as a "good" day.

    I also agree with whats been said DO NOT help others you need to help yourself. I am a full time carer for my Mother and it is awful, thankfully she lives with me but I am too ill myself to offer her the help she deserves most days. My Son has only just become a help but if I am stood up out of bed I am ok!

    As for your sisters they cannot have fibro in my opinion, don't know anyone who can go out every night with it

    Take care but thank you for sharing your feelings as it has just helped me xxx

  • Hi Sue and thank you for your comments.

    It is great to hear from somone who completely understands how I feel. I think I will do the casserole thing I have a slow cooker so I caan do that great idea thank you. as for your fatigue thats exactly how I feel couldnt put it better myself. Yes I dont feel fully awake at the mo. I am sure I could sleep and sleep but just cant stay in bed with an 11yr old, I am really looking forward to her going away in the June braeak from school. then I can just look after myself. I am really hoping that I will need an op to have my gallbladder removed just to get some rest and take some of this pain I have away. I know it will be painful but I am hoping once the pain from the op has gone the awful pain a i have in my side will go.

    I agree I cant believe that my sisters have fibro with what they do but thats what the dr has said so. I just have to look after myself and not compare myself to them. I know I CAN'T sleep , in constant pain, and so tired. I am not Letting fibro rule me it just does. If I could do everything they do I would be over the moon and to be fair they dont have children to look after their kids have left home.

    Anyway I am rambling sorry lol

    I am pleased that I have helped you too

    Take care sof hugs

    Penny xxx

  • I live from my slowcooker, currys, stew, soups, rice pudding, oh its a blessing. I am lucky because I have carers who prepare things for me but a full slowcooker does several days meals which get potted up and frozen so I just have to 'ding' them.

    Maybe write a letter to your family explaining exactly how things are for you. Anyone who goes out dancing every week can't have fibro, or if they have, then can I have that version of it please!!! I would LOVE to go out partying once a week. I'll have that version any day of the week.

    My family do not support me either, but I have care via social services. It might be worth investigating, even if you just get a little bit of help every week.

    I'm not going to say keep fighting, smile, be positive etc, because I have been in the dark place you are now and know you cant 'just snap out of it'. Instead I will say, cry, scream, rant, rave, throw dinner at the wall, do whatever you need to do to let it out. I am a shoulder to cry on and someone to rant it any time you need it.

    Always here for you, message me anytime ok?

    Love and hugs Julie

  • Thank you very much Julie,

    I am going to start using my slow cooker alot.

    I dont think I would get anywhere with my family as I say they have been told they have fibro and can still do so much, I know it affects people differently but because they can do alot they have the mind set that everyone can.

    I am sorry your family dont support you either.

    No you are right it is not a case of 'snapping out of it'

    ad thank you for being there, same applies to you too hun xxx

  • I can only echo the sound advice you have been given.

    Your family should not judge you or your level of debilitation. I would love to be able to party and dance everynight - once a week would be good let alone every night. All I want to do after a full days work is sleep.

    Be good to yourself and try and give yourself a bit of a break. ((Hug)) xx

  • Thank you catleigh,

    I will try and not be so hard on myself

    hugs Penny xx

You may also like...