I give up!!

Ok im new to this so bare with me! was diagnosed with arthritis at 23 nothing worked, 4 yrs ago i was told i was misdiagnosed and i actually have fibro im 40.

I am on pregablin and co-codamol, i work 20hrs a week and have a baby of 18months and a 9yr old. My partner has been a tower of strength stepping in to wash my hair, help me out of bed, take children upstairs to bed, lift baby into highchair etc etc the list is endless he now has to work away from home just to keep paying the bills and i have no idea how i am going to manage (stress hahahah). I struggle to drive to my job without feeling as if im going to fall asleep and struggle to deal with everything on my own as it is! Where do i turn, who can help, there is nothing anyone can do to help so this is a call for help if anyone can suggest anything at all i would be so grateful xx

11 Replies

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  • Hiya, yes there ishelp available. I am no longer able to drive to work, need adaptions at work so i was advised to call access to work. It can be found on the DWP websit. It could be possible that they pay for taxis as it is no longer safe for you to drive.

    Call them, they are helpfull and if you want to msg me to discuss tis do.

    All th best XX

  • Aww sorry to hear about your problems, you must be really worried about when your husband goes away. Dont know where you live but in my area we have the Surestart Scheme who work with families with children under 5 years old. If you have something similar in your area perhaps they would help out. What about your Health Visitor, can they suggest anywhere you could get help? Anyway take care, Love Angela xx

  • I live in remote Highlands and there doesnt appear to be anything every time i ask doctor they just say if you lived somewhere else this would be available. Thank you all for your comments and i will look into the suggestions xx Thank you for making me feel welcome xx

  • hi lv,iv only just joind this site n feel iv been a memeber 4 ages,there lvly ppl ere.if i was u i wouldnt drive t work if u feel the way u do.i take pregablin,naproxen n tramadol.mayb u nd ur script changin.if u get it changed it may elp u n it may not,it may elp u 4 a long time.i 2 was treat 4 sporadic arthritis 4 23 yrs,altho i do av it i kept tellin docs that the aches/pains i was havin wasnt the arthritis(dnt no ow but just new).4 yrs ago i was told Mr fibro was movin in...n e did the git!!!.unfortunately fatigue is a symptom that we av t deal wi n we all struggle t do every day things,sumtimes more that othas,i feel so much 4 u cos u av a family t lk afta.at least my son is grown.Mr fibro effects us all in diff ways but at the same time in the same ways 2.there dosnt seem t b any set pattern t mine n the pain is diff degree`s at diff parts of mi body or i can b the same.i no you`ll afta work but mayb u cud lk in 2 gettin sum more finacial help so ur hubby can work nr home.if u dnt lk ur sen u wont find out.the benefits agency arnt very forth comin in tellin u what u owt so if u can make an appointment.im sorry i avnt elpd u,i just feel that u mayb able t get elp fm job centre...it sounds like work it doin u no gud finacially or physically...i ope u get sortd xx

  • Thank you, i have tried going down CAB but never seem to get anywhere as we are nearly 2hrs away from our nearest one and i cant drive that far without falling asleep!! I was told from my doctor " you dont want to go down the disability route as then you will be labelled!!!!! Couldnt believe my ears! but who if not them can i go to. I just wish the answers were in black and white :( xx

  • Cannot believe he said you would be labelled, welcome him to the 1980's for me. What an idiot. You need a new doctor! It sounds more like he does not want to support you to go 'the disability route'! He is just being lazy, because it sounds like you definitely qualify. Labels are only put upon people who are mentally or physically ill by ignorant stupid people who have no concept of how ill you really are. Also there are a lot of people in your area who have fibro too. Because it is everywhere.

    I have Fibro M.E. and Arthritis and I think over the time I have had them the biggest change I have tried to make to my life is to 'take care of myself and my needs' I did not used to do that. Now I eat regular nutritious meals, I am also veggie and I feel I have more energy that way. Drink lots of fluids and do things that make me feel happy at least once every day. When things threaten to overwhelm you take a big deep breath and try to relax your shoulders. I also try not to worry about my weight, I have a thyroid insufficiency. I work 17 and a half hours each week, and I get a bit of help from working tax credit. Which has just been cut down a bit, thank you government for that lol! Also I am really trying to not be perfectionistic. Its really hard to stop that.

    Something I really want to ask you to think about is not to try to replace your husband when he is not there! You will feel even worse if you do this and you will make yourself even more ill. I know that you know not to do this but you need to not even try to keep it all going the way he does.. Your kids love you the way you are and they (well maybe not the baby) can help out bit, and its really good for them to see you stick to your limitations. It shows self discipline.. Mum just cannot do the same things as dad so things have to be cut back a lot while he is away! I know this wont help with the baby needs, but I had abdominal surgery when my daughter was 4 weeks old and my exhusband was worse than useless. I was in Canada and had no family there. My lovely mum inlaw came to the hospital and told me she could not help out because it was curling season! How selfish was I to have even asked her to help??? lol. I adjusted things till I got a bit stronger. Baby slept with me and got her nappy changed on the floor or on the bed wherever I was, I could only lift her if I was on the floor with her. She was not happy but she was taken care of. I was not really entertaining enough for her lol. she liked being carried around but it was just not possible so I just stayed on the floor and napped when she napped. Hopefully you can do that when your other child is at school. Hopefully the baby naps lol.

    Does this sound like a lecture? sorry about that. I think we all try so hard to be like the 'normals' and do what they do at the cost of our meagre health and wellbeing. They seem to glide through life, when we seem to fall into all the pot holes. Please dont give up because of the negative dr find yourself another and keep trying till you find a supportive one. Also I find my psychiatrist is much more aware of resources available in your area. I see her every 6 months for my anxiety and depression. Social Services can be a big help too, I have seen them mentioned in one of the other posts..

    We are all pulling for you, keep in touch! This is a great place to vent the anxieties and worries and frustrations because we all have them. xxxx

  • Just had another thought occured to me, you can get something called Direct Payments where you are given so many hours a week paid by the social/state, you can then use these hours for someone to come in and help you. If you Google direct payments it should give you some guidance on how you go about applying for this. I think you are then given a cheque book and timesheets to enable you to pay the carer. It could be that Adult Services will be able to help you with this as suggested by Jules.

    Angela xx

  • hi i really feel for you it is an awful illness and we all get angry at others and ourselves it out of frustration your partner sounds like a rock and bless you for keeping to your 20 hours work which in a way prob does you alot of godd although you dont realoise it it gets you into the work environment where yiou feel norml no offence intended by that what i mean is it is better than being at home all day and you are with others who probanly traet you normal

    although that is a good thing on one hand you do sometimes need a bit of extra help and care i would call your local D I A L put it in google and whwre you live they will come to your home andd assess what you may need to help you also if you drive could you get an automatic car this is what i am now looking into this would help you and also have you applied for a blue badge that may be of nhelp to you . your GP would also give you lots of advice well should do if he is fibro friendly of where to go i do wish you luck with it all love to you diddle x

  • Hi there mattjam,

    Its nice to meet you, i am so sorry i dont know what you can do but just wanted to welcome you and hope somone can help you hun. :)

    hugs, kel xxx

  • awww Matt, am sorry to read you're struggling to cope with some much as well as with having young children to look after. Being as remote as you are, you may have to "get labelled" as the GP said in order to qualify for things. I don't have any suggestions but wish you the best of luck with going forward. Keep talking to us - it helps to share and others on here often come up with sensible advice or simply friendship when you need it.

  • I came off here last night feeling as if i had some hope of actually getting help! Today i woke up after a bad night but tried to remain positive only to find all the numbers i had been given from my local surgery for the various services were all dead!!!!!! When i called the surgery back they just said 'oh well i dont know thats the numbers we have!!'

    Brick flipping wall aaaaarrrrrgggghhhh

    I could actually go to sleep and never wake up right now, the cherry on the cake was my hubby coming home and telling me there is a strong possiblity he will be made redundant on Monday.

    I believe things happen for a reason......on good days!! ;)

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