Living with mum and her fibromyalgia

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Living with mum and her fibromyalgia

Postby creativedaughter » Mon Sep 24, 2012 12:06 pm

Hello,

This is my first post to this forum Im 21 years old and on top of studying at university full time, working a partime job and numerous other jobs when I can I look out for my mum who has suffered with fibromyalgia for 9 years. My mum used to be a very independant and happy lady she'd had depression since she had given birth to me which my dad helped her manage , but 9 years ago she was diagnosed with fibromyalgia and 3 years ago lost her husband ( my dad) suddenly due to a heartattack at the time I was only 19 and the loss caused alot of heartache and grief.

All this change has taken its toll of her and her fibromyalgia where as she struggles to sleep being awake till early hours of the morning ( 3-4 oclock) and when she does get tired she'll then sleep throughout the day to which i get to spend no time with her at all ( i also have a younger sister 19 who i am trying to keep on the right path with her college education as my mum at times doesn't have the physical or emotional energy to do so as my sister is quite difficult at times). Her bodily pain causes her alot of discomfort making her not want to get out of bed in the day , this probably sounds the norm to those of you who are reading this and its nice to think theres somebody out their who understands how fibromyalgia can affect a family and their lives as many will laugh at me saying it doesn't exist and to move out if I find it so difficult.

Her leg swells when shes driving , her wrist aches to which she struggles to change gear sometimes ( meaning I take her places in my car although I don't want to take her independance off her completely as I know it upsets her that she can't manage). A recent visit to the doctors has shown that her muscle in her right arm is wasting , this explaining why she also has no grip to open bottles , jars or simple things due to hand ache which is where i have to help her. The depression isn't her fault its apart of the disease and no matter how positive I am or try to be my mum still finds it very hard , negativity overcomes all the positive I try to fill her with giving her no motivation to do an awful lot but on a good day I still see the old side to her that used to be there.

The fibromyalgia affects her walking also she can only walk for a short while before the muscles in her back , legs and knees begin to ache and this then makes her clumsy and she can sometimes fall. Once she falls over I notice that she bruises very easily and for about 2 to 3 days after this she is in bed unble to do much of anything.

She very often doesn't like visiting the doctors , despite the fact of how much i stress that she needs to due to all her health problems ( fibro , hyaitus hernia however its spelt , numerous infections and such ) and for the fact thats at 54 ( her age) i still need my mum , she becomes upset and stressed as she feels doctors don't believe her when she tells them how she feels. Im currently the only one in my house ( theres 3 of us) whose going to work and gaining income , I do the weekly food shop , house work , clothes washing , look after the pets and currently managing the finances ( mum still does tiny bits but overall shes not really able to) . Its difficult but I feel Im the only one who is willing to help my family as all other family members left the scene when dad passed away as they didn't get the inheritance they wanted and don't favour my mum because of it .

Im currently helping mum to fill in a application for DLA ( disability living allowance) as her fibromyalgia has gotten much much worse and I feel she's suffered long enough and her financial stress and struggle she could do without if there is something she can claim. I understand DLA is becoming inactive as of april 2013 for some people claiming but has anybody else had success claiming it on the grounds they have fibromyalgia? Mum is very upset and stressed that this DLA will require a medical as in the past she's had alot of problems with not being believed to have fibromyalgia and due to this she is reluctant to apply.

If anything I just wanted to share my little bit of a story as to my life and how fibromyalgia doesn't just affect my mum's life , its hard and Im doing my best to balance taking care of my future , pointing my sister in the right direction and helping my mum cope. If anybody has any advice or can better help me understand fibromyalgia and how I could help my mum I'd truly appreciate it , as my mum has it set in her mind she has to work to solve our financial struggles when it isn't so , Im putting actions into place so that we can manage and so that she can live stress free and focus on bettering her health and overcoming her fibromyalgia.

thanks for reading ,

creative daughter x
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Re: Living with mum and her fibromyalgia

Postby djgs » Mon Sep 24, 2012 12:30 pm

So glad your Mum has you to support her, sometimes us fibro-ites feel as though no-one understands, sometimes even our own partners. As for the DLA claim some people do get DLA with Fibro but it all depends on how the disease affects you not the disease itself. It sounds like your Mum has a good case but you must be honest, some people don't like to mention they fall or are depressed or whatever else is wrong with them, make sure you put it ALL down. Also a medical is not always required if enough information has been provided and would suggest that you also get help with filling in the form from organisations like DIAL as they have experience in filling in these long forms and know exactly how to word things.
DLA is changing to PIP sometime soon but that does not prevent anyone from claiming now, hope your Mum is successful with her claim and she is very lucky to have you looking out for her
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Re: Living with mum and her fibromyalgia

Postby multy1969 » Mon Sep 24, 2012 12:35 pm

hi,i take my hat off to you hun for all you are doing,its very hard for the sufferer when people dont get it or understand what fibro is and just brush it aside like its nothing,im 42 and had it for 3 years now,like ur mum i was very active and i seem to grieve for the life i used to have,even the simplest things are a struggle for us,just wish people would get this and try to understand even a bit becaise having family/friends support really helps with how u feel too(not that i have that,apparantly im just lazy according to my family) so well done for sticking around hun xxxxx
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Re: Living with mum and her fibromyalgia

Postby creativedaughter » Mon Sep 24, 2012 1:04 pm

It is upseting for me because I live with my mum and have done all my life , when people dismiss the fact she has fibromyalgia and think she isn't being a very good parent because I help her in the ways I do it does upset me greatly. I truly appreciate the fact you replied to my post :) thank you both , I've been researching applying for DLA in the evenings and weekends once i get home from uni and work ( i got to uni 9 till 4 then have to leave for work from 4:30 till 7 sometimes so its a long day) . Its tiring and emotionally draining for me at times but i think if I don't take things into action now and make changes then my mum can't have the comfortable life I want her to have as shes only 54 but she doesn't see the bigger picture and the potentially better life that could be waiting for her.

I have even looked into the possiblity of selling her car inorder to get her a automatic so that she can still come and go to places as she'd like without taking away her independance and make it less physcially straining for her. I really appreciate your support :) x

kate x
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Re: Living with mum and her fibromyalgia

Postby weemags » Mon Sep 24, 2012 1:04 pm

hi im a mum with fibro , and when i started to read ur post , i thought it was my son , u are the same age as him , first u are a wonderfull young woman , takin care of ur mum and family the way u do , but u hav to take care of urself to , hav u ever heard of rest bite , thay will come in to look after mum , while u get some time off , u need it , everyone dus , u will get help with this from the social work department , ur doctor will give u the number for this , ur mum will need to get a OT, thay work with the social work , the OT will help get u things to make ur mums life easer and this will make ur life easer , u hav to keep on at them call them every week , there very busy , i hope this helps u darling , i will keep watchin on here to see how ur doing xxxx my son is my career , but is hoping to get back to work in jan , iv had fibro for 9 years to , we live on our own , good luck sweetie xxx
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Re: Living with mum and her fibromyalgia

Postby Jo43 » Mon Sep 24, 2012 1:11 pm

Hi, you really are doing a great job. It must be hard for you having to take over the role you've had to, but I bet it's a relief to your mum that she knows she has someone she can trust and who believes her. I echo the comments from the above posts. Do get help completing your DLA forms, make sure you put down EVERYTHING and just how much you do too because you get different money for mobility issues and carer issues and as you are caring for your mum you need to ensure you put down everything you do for her too. Can she get ESA (Employment Support Allowance)? (Another long form to complete but worth it if money is an issue). It isn't easy, but if it is affecting your mum this much the money burden on you all would be worth it. NICE is another agency like DIAL who are good at helping you complete these forms. Google them, they are free. If your mum needs a medical, just make sure you ask for a recording of it and that she doesn't go alone. Sometimes the assessments can be fine, my own experiences have been good, but others have had terrible ordeals.

Stay strong for yourself too, it must be taking it's toll on you. xxx
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Re: Living with mum and her fibromyalgia

Postby creativedaughter » Mon Sep 24, 2012 1:33 pm

I do my best to look after myself and give myself some time to relax ( treating myself to the odd girly clothes shop or bubble bath and a mud mask pamper) . The only things that can become stressful is the current finances that I am sorting out as my mum unfortunately isn't very good with money either , due to past experiences where her parent and past partners took her wages therefore I assume this has affected her in her capability to manage money as dad managed all the bills before he passed away .

Doing the weekly shop for her isnt that bad , I manage within a budget she eats very little due to her hernia. Theres a guy there who seems to have the habbit of trying to chat me up everytime I go haha ( currently though with uni Im not sure I have time for a bf unless he was willing to wait for me as I can't let myself become distracted as its my final year of a bachelors degree in Creative business) . Mum doesn't go out all that much , she'll spend her evenings sometimes with a friend then come back later that evening and overall this seems to be the only bit of travel she tends to do unless my sister is to lazy to catch the bus home from college and she feels obligied to pick her up.

Alot of her time she tends to spend on games on her laptop it seems to keep her mind active and content, I've actually just set up my own blog / website for my business and am convincing her to start her own blog on blogspot to talk about her fibromyalgia and hopefully giving her contact with others like herself not making her feel so alone at times. She's not worked for 21 years also so having friends is something she's short of . Thank you all for your comments :) I've just found the local DIAL where I live I'll hand them my DLA application and go with mum in hopes to sort it out x
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Re: Living with mum and her fibromyalgia

Postby FluppyPuffy » Mon Sep 24, 2012 2:09 pm

:wave: :wave: and :welcome: to the forum :wave: :wave: I've moved you into this part of the forum as, with this being your intro post, it's the most suitable board for you :wave: :wave:

There is lots of info and advice on here, for both your mum and you, maybe she might want to have a look and a read of things with you??

DLA isn't claimed for a particular illness or condition, it's claimed based on how someone is affected overall in their daily life with/by their particular problems. There's no reason why your mum shouldn't be eligible for it, like has already been said, everything needs to be put down in lots of detail to show exactly how she is affected by things in all of her daily life. Places like CAB (Citizens Advice Bureau) and other similar organisations can help with completing the forms, so it might be worth checking to see who/what is available in your area. As they are familiar with benefits system, they may also be able to tell you what other things she may qualify for as well.

It sounds like you're doing a fantastic job in helping your mum and sister as well as fitting in uni and work, the one thing that is important tho is that you make some time for yourself. You need time to relax and enjoy yourself or you will ultimately crash and burn. I'm not wanting to scare you with that, it's just that I've gone thru so many crashings and burnings myself and I would hate for someone else to feel like I did.

There's always someone around or not too far away on here, so anything that you want to know about, just ask and hopefully you'll get some helpful replies :bear-dancing: :bear-dancing: :bear-dancing:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Living with mum and her fibromyalgia

Postby Iceskatemum » Mon Sep 24, 2012 2:47 pm

Wow you are indeed an amazing young woman . I have 3 children and I don't think combined that they would have the insight or empathy you are showing your mum. Combine that with loosing your dad at such a young age and all that you are also doing uni/working/looking out for younger sister both your mum & dad (if he was still around ) would be extrememly proud of you . :flowers: :flowers:

As others have said don't neglect yourself, you also need time to be a young woman at uni , hanging out with friends etc. can you see if another relative can help you with your mum, just to give you a little break.

DLA is to assist those who have difficulties with thier daily living requirements and mobility problems . The questions seem simple enough but sometimes people tend to fill in the quickest and easiest answer . You need to look at you mums daily /weekly requirements and fill out the answers accordingly in as much detail as possible .If necessary use a sperate page to contiune answers ...you won't get marked down for not keeping it in the boxes lol See if there is a benefits clinic at the local CAB or sometimes there are other community based ventures.

Don't just think that everything is due to fibro and should be put down as that, from what you say her depression was apparent before the fibro and so its impact on her daily life should also be emphisised as should the weakening of her wrist grip etc as that I am guessing makes a difference in what she can do for herself.

I hope you are sucessful in your claim and wish you & your family all the best for the future.
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Re: Living with mum and her fibromyalgia

Postby Iceskatemum » Mon Sep 24, 2012 2:54 pm

Sorry meant to include this web addresss http://www.benefitsandwork.co.uk this might help in filling out the forms.
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Re: Living with mum and her fibromyalgia

Postby bumblebee57 » Mon Sep 24, 2012 4:53 pm

Hi. You are such a credit to your mum and family. Not all young people are that responsible and caring. Im glad to see youre balancing that responsibility and care, with time for yourself, which is important. I bet your mum is very proud of you.well done.and good luck at uni. xx
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Re: Living with mum and her fibromyalgia

Postby masonsbarms » Mon Sep 24, 2012 5:45 pm

hi, i cant add to what has been said,

just wanted to say you are a wonderful person and i hope you and your mum get all the help you deserve..

take care xx
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Re: Living with mum and her fibromyalgia

Postby lyndylou29 » Mon Sep 24, 2012 9:20 pm

Hi just wanted to say you are doing a brilliant job with your Mum xx
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Re: Living with mum and her fibromyalgia

Postby ChrispyCritter » Tue Sep 25, 2012 12:17 am

Hi Hun just want to say my heart goes out too you, You are truly a wonderful young lady n hope with all my heart that you get all the help you deserve you should be very proud of yourself n all you do for your mum best wishes to you n your mum n BIG HUGS :D
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Re: Living with mum and her fibromyalgia

Postby dianamarie » Tue Sep 25, 2012 2:51 pm

your a very good daughter to your mum, i am a mum of 2 daughters aged 19 and 14, they both help me when my fibro is bad, i have had it for a year now, i also have osteoarthritis in my right knee, so i get lots of pain, i like your mum can only walk for a short time before my muscles get tired, i have to use a walking stick, but i dont like to i dont sleep too well either, i have to rest durin the day, take care, x
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