not coping very well at all

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not coping very well at all

Postby fliss » Mon Mar 19, 2012 2:28 pm

Hi all,Im having problems at the minute last week i was refused dla yet again so now Im off to tribunal,I just dont seem to be coping,Im still awaiting pain management course and rhuemy appointment but i just cant stop feeling so low tothe point Im curling into a ball and crying,i try pace myself but it doesnt matter how small a job is it tires me out which then i get upset about.my hubby is trying his best to cope but i can see him slowly getting depressed.i dont want to be a burden on him,i keep telling him he doesnt hav to put up with fibro and me that i wud move in with my mum,but he says he doesnt want to and that he loves me ,im just so fed up of not being able to do wat i want.and i know people will say that i hav to change my life and fit it around my bad days but i dont ever seem to get any good days.does anyone hav any advice and that i shud just get over it and face it im gonna be like this for the rest of my life.please is anyone feelin the same as me xxx :( :( :( :( :( :( :( :(
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Re: not coping very well at all

Postby masonsbarms » Mon Mar 19, 2012 5:36 pm

hi fliss realy sorry you are so down but i have said all this to my hubbie and still do but gradualy am starting to beleive him when he says were in it together i only got diagnosed last week and am struggleing with excepting it and keep crying i know alot of people do cry alot as it hard to deal with try to believe your hubby when he says he loves you as this helps me it dosnt stop the pain but makes me feel secure have you been on the stages of grief on here i fpund it helped to know evertone gose down the same road hope you feel better soon x
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Re: not coping very well at all

Postby denys » Mon Mar 19, 2012 5:46 pm

Fliss we all know how hard it is just trying to do a few day to day chores etc. Its so difficult to accept that your life has changed and I am now having CBT to help, I'm also attending a life style course which is helping a little and today went to my first session of something called calm and create, it was great, the 2 hours flew by, its held in the Lady Lever art gallery which is local to me and was very relaxed I came out feeling so much brighter so am going to continue with this.

The point I'm trying to make is, that like you I was sinking, couldnt see how I could possibly live like this and cope with the pain and it is still there, it hasnt diminished and I still occaisonally get upset cos I cant do something simple but I'm getting out of the house and enjoying just a couple of hours here and there and I look forward to going it distracts from the pain and for just a little while the pain isnt my focus.

You need to push your GP and ask him to find out when you will get in to the pain management program, all my stuff is run on the NHS so there must be some sort of similar things in other areas. Yes you do have to change your life but it needn't be all bad :hugs: :hugs: :hugs:
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Re: not coping very well at all

Postby fliss » Mon Mar 19, 2012 6:25 pm

thanks both of u and denys i will look up and see if we have one around here,iv been trying to go out on my scooter but sometimes i just feel im too not there to drive it,i know my hubby loves me and me him,sometimes i just think he wud hav a better life without me but then he tells me he wud hav no life.i dont like relying on others to help its weird but i like things done the way i do them.my mum helps shes phoned today and its as if she knows when im feeling low ,shes now taking me out 2moro and friday.im going to ask my doc if he will chase them up as i was referred to them in october,i also got a call from doc this aft to see how i was feeling so he is now prescribing me something else,i also hav a problem with my mouth,its been really sore for about 6month so hes going to try something else xxxthanks again both of u :hugs: :hugs:
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Re: not coping very well at all

Postby Ldyalb » Mon Mar 19, 2012 6:59 pm

I've recently finished counselling for a similar problem. I wasn't depressed but was sliding into a depression. I found the Counselling really useful, it was almost like bereavement counselling to let me accept the loss of my former health and to accept my new lack of health.

It's really helped - now when I get those negative thoughts I can chase them away. Before they would stay in my head for hours on end and ruin my day.

I had a bad patch the weekend before last. I was worried my boyfriend would leave me. He hasn't. I helped him in the past when he was ill and now it's his turn to take care of me. We've been together almost 5 years now, since we were teenagers. Yes, me being ill sucks for him too but I'm still the same person I used to be, I'm just a bit more fragile now. I can't go out on day trips as much as I used to, and I need to rest up more. But I can still love and support him as I have done before. We can still talk and have a laugh, play games etc. On better days we try and do something we enjoy, even if just going for a short walk or having lunch in a cafe.

It takes time to adapt, we're always learning on our journey with chronic illness but I do believe things improve - we have to give ourselves time to adjust. Don't be too hard on yourself. You're still the same lovely bride your husband married, you just have a health problem but there's ways to work around. I'm sure your husband would much rather have you as you are, than to not have you at all. I'm not married myself and I've only been in love once (with my bf) but I know if he had an accident tomorrow and was paralysed for example that I wouldn't leave him. I'd look after him as much as I could, even if that involved toiletting, washing etc. He'd still be the same wonderful person I fell in love with. I love him as a person - not his body. Although I do like the latter as well ;-)
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Re: not coping very well at all

Postby denys » Mon Mar 19, 2012 11:55 pm

Glad your doc is helping you Fliss and :fingerscrossed: you get a course or 2 to help you. It doesnt suprise me one bit that your mum senses when you need her and enjoy your days out :-D :-D :-D

Your OH needs you just as much as you need him and you will get through it, I try to go out and use my scooter too but some days it is just not possible, but that desnt matter, tomorrow is another day :-D :-D :-D
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Re: not coping very well at all

Postby weegranny » Fri Mar 23, 2012 2:18 pm

hello to all .just remember tomorrow is another day ,at times you do feel as if your body that you knew is no longer there ,i just keep telling myself that i will not let this thing get to me ,i know its of no help to you when you are feeling so low .but you will realise one day that its here to stay ,its so hard to cope with ,ive had this since about 2001 and at my lowest days ,i talk to the dog .lol people going past must think im crazy ,but hey! she just looks at me as if to say .you will be ok . do you have a hobby? i try and do xst ,theres a laff for you .but i find it does take my head somewhere else .it also helps with my concentration , my hands get so sre at times but when i look at my xst im so proud that i did it .tell yourself that you will survive .sorry if this doesnt help just remember that you are not alone .
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Re: not coping very well at all

Postby fliss » Fri Mar 23, 2012 9:35 pm

weegranny thanks for ur reply,i had to hav my beloved doggie put to sleep 2 week ago but yes i used to talk to her constantly and i think this may be contributing to the way i feel.i got a call yesterday stating i hav an appointment with the pain management team on 23rd april so hopefully they will be able to help me.xxxhope ur all having a lovley evening :hugs: to all
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Re: not coping very well at all

Postby fibrostar » Wed Mar 28, 2012 3:01 pm

hi fliss, i could have written that post myself, days when i feel so low and useless that i just want to curl up under the duvet forever, i wonder what my husband must be thinking when yet again i've forgotten to do something important or he has to do the housework before he goes to work,he has had to change his shifts so he can fit it all in, its so unfair on him. :!:
i've had fibro since a child so you would think that i would have learnt to live with it by now, but as ive got older my fibro has got a lot worse,i found out recently that i have sleep behavioural problems and the dr said it is caused with trying to cope with fibro and putting on a brave face for so many years that when i sleep at night i have no brave face to hide behind and all my worries and anxiety that i have kept bottled up is let go and I thrash about in my sleep from the minute i fall asleep until i awake. This leaves me exhausted and i have fell deeper into depression as i am trying to function on no sleep at all.
see what wonderful things we have to look forward to :happy-easter1:
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Re: not coping very well at all

Postby animalhouse » Wed Mar 28, 2012 6:18 pm

i am so with you on this, i have only had this 2 years but recently it hit me i don;t think i believed it was fibro i got after my car crash, think i was always a hard worker so if i worked hard enought ( :lol: ) or tried hard enough it would go away and i would be ok again. after this long you begin to feel like you haven't still got that now have you :!:

also after being the same size for the past 20 years or all my adult life i cant accept being several sizes bigger and refuse to buy clothes so live in the same trackys i had or the 1 or 2 pairs allowed myself to buy until can fit in my old stuff again :lol: .

inside i am bear grylls or watching the ice road truckers and dreaming i will one day take my kids around the world still - but in reality i am a fat middle aged not even housewife as we cant do alot can we. wont even admit if i try and go into town that i would enjoy it alot longer if had a mobility scooter instead of a short walk and lots of rests then shattered after an hour out.

theres alot i could do to make my life easier thinking about it but that would be admitting i have this.....

anyway we are all with you we know we are not useless etc etc but our head tells us alsorts of rubblish. :roll:

take care. :-D :sleep: just nipping off to watch climbing everest.
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