Fed up!!!!!!!!!

Sorry for the moan in advance, but I am so fed up of trying to face up to this horrid fibromyalgia. I really want to cry, and I keep thinking what my life was like before it came into my life. Two years ago I was working full time as a nursery nurse, my children were my life, they still are, but I feel robbed because I cant do things like I use to.

This is making me really sad, and I know others are worst than me, but I am finding it really hard to accept how different my life is now. I dont go out with my friends, me and my husband just sit at home because going out makes me extremely tired.

How does anyone on here get on with their life.?

Jan x

33 Replies

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  • Hi there janlou sorr to hear you feeling so fed up, I guess thoughts ar that there's nothing I can do about it so so point in letting it beat me, I have had it for years, when my children were young they kept me going, they gave me reason to not let it beat me, and you always had to be there for them 24/7 so I guess it's a question of having to get on, I do get despondent once in while now that they have left home and don't need me o much anymore, I have what I call sorry for me days, lik what I have now as I'm in so much pain and am getting real sharp pains in the bones of my legs, and the muscles in my thighs keep going into spasms nd are very sore, But i do try not to let the sorry or me last too long ... Hope u feel a little better tomorrow, gentle hugs Dee xx

  • Hi Dee,

    That's very well said!

    I find when I go to bed and start to relax my body starts to spasm and twitch and it makes me really mad cause as I doze off I twitch and then wake up :(

    I have a positive thing I would like to share, I'm hoping to get a wheelchair (think I may have mentioned it, sorry if I have).

    I showed a friend a picture of a wheelchair I like (will try and out on here) and then showed her a picture if a race bike but you use your hands to peddle instead of your feel, she said oo you could do the GNR (Great North Run) in that and u said oo I could but the bike is really expensive around £3,500 if not more, but I said to my friend I could see if I could get charities to spencer me or help to cover the cost of the bike. Anyhoo I have contacted Bupa and asked if they could point me in the right director to help me get started find a trainer.

    So I am maybe looking at doing the GNR in 2014/15 as people like use have to pace ourselves when doing any kind of training :D

    Xx

  • How old are your kids? (If you don't mind me asking) :)

    Do you use any aids? I am waiting to see a physio to ask for a wheelchair assessment. To make my life easier.

    You don't you and your partner go swimming that's supposed to be really good for people like us.

    Or if you plan on maybe going out for a meal/pictures have a nap during the day I have started doing that and I find I don't get so tired as quick. :)

    Hope these help xx

  • Hi Susan, I have two my son is 47 has two daughters and my daughter is 51 and has two sons, I live with my daughter, they are all out at work all day, I have my own room and everything in it so I spend 95% of my time in there when they are in, I'm able to sort myself out and still do most things for myself albeit take me ages, at the moment I use crutches , but don't think it ill be long before I shall need a wheelchair or scooter, I've had these conditions since I was 11yrs of age and am now 72yr of age with mind of a teenager lol, and was told I would be in a Wheelchair by the ageof 50yrs old as two of the conditions i have afect the spine, so far ive cheated them lol, unfortunately my husband died of Stroke in 2003 I had nursed him for 10yrs he was incontinent and had vascular dementia, still miss him, as for swimming I belonged to gym for 5yrs and done aqua three times a week, I'm not really. Fan of the water but I did enjoy that, I also potter around in the garden no where ear as much or as good as I use to but I do love my garden, we also have three dogs to keep me company and busy lol, I'm guessing u are young ? Thnx for your message, sorryo have ranted on I'm on a ner today, like gins I think, sending gentle hugs to you .....Dee xx

  • Hi Dee

    I'm 25 yrs old, and was only diagnosed last year, I have been looking at the new benefit called PIP, you can go online and do a self test and I have don't 2 and they both say I would get high care and mobility which is more then I get now. As I'm on low care and mobility. I hoping when I see the physio they will send me for a wheelchair assessment, as my mam always used to say make it terrible and add tears it's the only way people will notice your in severe pain. I was a full time career for my mam before she died in 2011, I am still in contact with her as I am spiritual. :)

    Have a good day :) xx

  • Hi children are 21, 17, they are girls and my son is 14....I do spend time with my eldest daughter Lucy, but Jess and Matthew do they own thing now.Think I just miss them been little, time has gone too quick.I was thinking of going swimming with my hubby, and try and be more positive. Thanks for your reply.

    Jan x

  • Yeah, :) even if you picked a time when there is no children in the pool so you enjoy it a bit more. Everyone has a negitive view on it at some point in their life I did, but now I have found something positive I'm keeping hold of that. Though I am having some family/friends who are trying to say that me going in a wheelchair is a terrible idea, I just think there the ones being negitive :) xx

  • Hi,

    I saw a medical psychologist for a few months (recently had last session) and although I knew she couldn't do anything about the condition, she was able to help me think about things differently. One thing I do now is that I don't give myself a hard time when I feel sad at the loss of my 'previous' life. As she said, that is absolutely normal. What I've been learning is how to stop those thoughts spiralling downwards so you end up feeling in the depths of despair. For me it's been about learning techniques that work for me (not everything she said felt relevant) and trying to use them when I feel down. Maybe your doctor could refer you? Go with an open mind and take anything from the sessions you think might work for you. Don't get me wrong, I still have really bad days, but recently I haven't been as down as I have done.

    Also, we know we have to pace ourselves and sometimes when we want to do something we might push ourselves too far and suffer for a number of days. My friend recently said to me, just think about what you achieved (did) that's made you feel so rubbish (she used another word). It made me smile and begin to think about what I'd achieved (painting a wall!!) and that distracted me from my negative spiral of thoughts.

    Sorry if I'm going on a bit. One thing fibro hasn't taken away from me - my ability to talk... and talk... and talk.

    Hope this helps in some way :)

    Pip

  • Hi pip love your picture, I think squirrelles are o cute, and yes like you fibro hasn't taken away my ability no talk, in fact cos I'm on my own quite a lot, when I do have company i tend to develop what i call verbal diarrhoea lol, think thats just what's happened in my answer to Susan lol I've sem to have gone on and on lol, take care have good day weather here looks good, gentle hugs Dee xx

  • Good Morning girls, I cant imagine my life without swimming, I swim Mondayto Friday and itkeeps. the pain down sø much. Followed by the jacuzzi. Give it a try if you can . The other great help is my infrared lamp x

  • I used to go to the spa every day as I was a member but can't get back up the steps at the moment . They even let me go to the poolside on my scooter.

    Problem is now my muscles are so week I cant swim anymore and I got in trouble a few times. That frightened my husband too! Wish I could do some of the things I used to do ;-( Jacuzzi was so good for my fibro !

  • So sorry you are unable to get in the jacuzzi and the pool.I think the less we do, the weaker we get, so hård when we are in pain.

  • Yep, I often feel I go into verbal diarrhoea mode when I see people too :)

    Re the photo, that's one thing I can still do... wildlife photography. I have had to adjust to the fibro, so I can't walk miles and sometimes I'm too tired to concentrate. However, when I can I visit hides or other places where I can sit and then take photos and watch the wildlife as long as I'm comfortable. The red squirrels in Scotland where I live are soooo cute. It's something that makes me happy :)

    Pip

  • I like all squirrels but I do feel the red one is the cutest, I just luv all animals and am in my gloriy when I am with, can't watch them on tv as I have a vivid imagination and my mind goes to far when it's a survival programme, I have three dogs an African grey and crimson winged parakeet, theoretically speaking ( my thats along word for Saturday isn't it lol ) I shouldn't have any because of my asthma, but I jut opulent bewith out an animal especially my four legged friends ......Dee x

  • Just hate it when this blessed iPad does my spelling for me and puts in a completely different word lol, I forget to look and make sur it hasn't interfered lol, that should read, " but I just couldn't be without " ....sorry Dee x

  • Yes, it's amazing what predictive text thinks you're trying to say ;)

    I love animals and couldn't be without my 10 year old Yorkshire Terrier, Nubi. He's a cutie and knows it! My partner is a teacher and she works in the evening as well as during the day, so he keeps me company. What type of dogs do you have? Thankfully it's cats that I'm allergic too and not dogs :)

    We were hoping to move as, living in a big flat, I have three sets of stairs to contend with. A bungalow was the hope - no stairs and a proper garden. However, with me not working it's just not going to happen. So, we're making the roof garden into a 'proper' garden. Got some artificial grass (which really looks like grass) ;) and I potted some insect loving plants earlier in the week (still recovering) and have bees and butterflies up there already. Once it's all done I hope to put bird feeders up and then I can photograph any wildlife that visits. Here's hoping :). Pip

  • Your roof garden sounds nice, i put some plants in the garden for the wildlife,.....we have 2 westies one is extremely sick Sophie she is 12 & actually my dog, she has chronic kidney failure, Lucy 13 the other westie is my daughters and the boxer Ben who is 11 is the family dog, long story, to cut it short my daughter moved in with me 12 yrs ago and Lucy came with her, Sophie I already had and we got Ben so it makes him a family dog he's a gentle giant, I've always had dogs and couldn't be without one either ...Dee x

  • Westies are lovely and my sort of size if you know what I mean. Ben sounds like a great dog too. The bigger ones are often gentle aren't they. My soppy dog has just been having "bellies" :)

    Pip

  • :D that was a very good long word...... for a Saturday :-) ....... Go Dee :-)

    Foggy x

  • Thanx foggy be a long time before I ay another long one, my brains not that cleve lol, how have been foggy, do like your pics you put up :) Dee x

  • Morning gins sorry to hear that you are soooooo fed up, and yes I hate it when people steal your ideas and then Make out they thought of it, if that had been me I'm afraid I would have wrote on his timeline say , "really glad you liked my idea and are going to use it" .......are u a Facebook fan gins, Enjoy your trip to the craft shop gins gentle hugs to you ...Dee xx

  • Yes I suppose I like Face book well my bonnie daughter lives down south and OH has two sons in Yorkshire and facebook is how we all keep in contact pictures etc. Didnt make the craft shop but did go out and get some bits I am going to try and applique a rabbit lol should be fun xgins

  • I must be thick gins "what do you mean by appliqué a rabbit" ? ..Dee x

  • Yes I like face book too as its a Good way to keep in touch especially if you can't get out to see your friends n family because they live too far away.....Dee x

  • The question is gins: Does the rabbit mind being appliquéd?! Lol :))

  • The wabbit is enjoying beying clothed :) he is so chilly without any clothes on :)

  • He he. I just wanted to make you smile :) you'll have to put a pic up when you've finished him/her

  • What are you making with the appliqued rabbit. I quite like doing hexagon quilts and padding cushions and then sewing round the patterns to make them look quilted. I love the 'H' shop and used to spend a fortune in there, I feel sorry for whoever clears out when I die (not yet I hope) cos the amount of crafting stash I have is enormous, but shrinks etc told me it was good for depression and gives you a sense of worth when you finish something. Can you post a pic of it whe you've finished? x Lynn

  • I sure will :)

  • Hang in there Jan, your not alone. Often think exactly the same as you. Its sounds glib but I try to think of all the things I am blessed with. I find there is loads and in some way it gives me comfort. No one else in either side of my family has any experience of fibro and I can feel isolated. HealthUnlocked really is a Godsend for me.

  • What you say is very true, I have a lovely husband 2nd time round lol..... so supportive and 3 lovely children, and a wonderful mam and dad. xx

    Jan x

  • Hi Jan,

    I'm really sorry to hear that you feel so sad, but being on this site helps, you have had lots of replies so people do care.

    I don't feel too good at the moment I haven't got a partner, so no-one to moan to....;( I had a fab job with the police, I was a Police Community Support Officer. I patrolled on foot for 8-9 hours a shift, I loved my job, but now all i do is go for short walks and sit and watch the telly.We all have bad days, hope you feel better tomorrow. Sue x

  • Thanks Sue, I worked full-time as a nursery nurse, miss it loads. I feel ok 2day. Thanks for reading my message. xx

    Jan x

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