Hi their is other eny1 out other who ... - Fibromyalgia Acti...
Hi their is other eny1 out other who is a single mum with fibro with no support HOW DO U COPE WITH THIS CONDITION
Hiya sorry ur suffering i have fibro cfs ibs asthma i live alone with no support its hard for me but i feel for u being a single parent with a child to look after and suffering hugs for u xx
I am single for 2 years now & I contacted my social services locally & they have made adaptions around the house, I listen to music a lot & the TV never goes on until around 8.oo also my ex lets me have our Pomeranian he has helped a lot with love & due to having to walk him at night it has made me stronger I cannot walk far but it has helped, it has to be harder with a child as well but you have to try to stay strong for both of you, if your child is old enough teach them to help do things to lessen your chores good luck I am here if you need to chat billy
Hi their thanx for or reply ...I just find that docs don't understand how hard it is and I think they think because u have a child or live alone and because u make a dinner or take ur kids to skool then u cant b I'll ...they just don't understand fibro at all ..or how hard it is for uz x
My gp is rubbish and so was my pain specialist that shouted at me and reduced me to tears. But don't give up. See another gp or change surgeries if you can. You can go on the fibro website and request a fibro pack to be sent to the gp. But ask gp yo reefer you to the rheumatologist , they know everything about fibro and are very helpful and understanding x x
Thanks for or reply .I was at my docs today and I felt like I was talking to a brick wall ..av bn suffering with a lot of shakeing all over ..and av had time we're av felt like av took a seizure like symptoms in my sleep and its a horrible feeling told the doc today but she says its probley down to stress ..fed up with doctors xx
try to stay strong, its very stressful having the illness & I have had many GPs that kept trying different things however now I have a great GP & I can have a good conversation & he is very supportive too I guess all you can do is look over the net & look for answers like I had to then list the problems you are suffering & try to do a comparison, as it happens I have ME not Fibro that has been diagnosed for the last 2 years so good luck & if you need any pointers let me know billy
Thats true, because appearantly its just in your head. If you have fibro and something else happens -they just go 'oh its fibro- take a panadol' well heres the guts ok- fibro is in your head, the pain switch got turned on and everyone left the room. You have to push against that door to get back to that pain level in order to access the switch and turn it off again. You have the power.
Amanda I'm not a single mum but my partner works shifts and is away a lot of the time, I have 3 kids. 4, 11, 15 and it's been extremely difficult to come to terms with fibro. I've changed my job from 28.5 to 18.5 and term time only because I couldn't cope, last flare up I had last 3.5 months . I push myself all the time, my daughter is late for school a lot because it takes me so long to get ready. I've learned to stop when I can't do anymore, have a rest when I can , keep pushing my gp to refer me to pain clinic and rheumatologist and look at my medication all the time. I've applied for pip to get help financially and refered myself to the intermediate care team that assessed me and provided me with adaptations around the house to help me. And I got a dog. He helped me when I feel low and is always here for me,no questions asked no criticism etc. I've told my employer I'm disabled and they put things into place to help me at work. I shop online as I can't walk around. I listen to music is to relax and bought a electric blanket to help with the pain in bed. I really admire you, keep strong your doing a great job and don't ever let anyone put you down. Lots of gentle fluffy hugs x x x
Thanks so much for or reply it is very hard at times and I do look after my son well hez a great kid sometimes a feel am Letin him down because am so tired and weak and I want to b taking him out to the movies or just some fun quality time together instead am in PJs on the sofa because am just so dun in ..a asked my doc today about pip and I felt terrible of even asking if she wood support me with it ..she said that pip or DLA is for people who can't do anything for them selfs ..am just totally fed up with the hole thing ..a feel like am constantly repeating my self to doctors xxx
Amanda don't listen to your gp, he sounds like a total idiot, you need to go and see a rheumatologist. For your pip all you need to do is call them aske them to make a claim and they send you a claim pack. Pip is different then dla, in there you have to explain how your illness and pain affects you every day and if you need an adaptations to help you you need to talk about them, when you feel the forms out fill them on how you feel on the worst day of your illness. You have 4 weeks to fill it out in and you don't always need your gp to back you up. You can send them copies of your referral letters any appointments you went to etc. keep a diary. I did a body map diary ,made lots of blanc copies then wrot the date time etc on the back and how I felt and scribbled parts of the body and given a scor out of then my pain. It was hard work but after 34 weeks I was given the higher rate of daily component and standard for mobility, ( I am fighting this) . Change your gp. Find out if you have an intermediate care team in your Area and call them you can self refer, they send out a occupational therapist who assess your home and your movement, they will then order you equipment like a bath cushion, toilet frame, crutches etc. in the last 3.5 years I've learnt that you can't rely on the Gps you need to nearly go in there and tell them you diagnostic. Get a referral to the pain management / specialist. Honestly don't give up or give in. There are lots of services put there that can help and fibro has been recognised by the nhs as an illness and a disability. If you need any help I'm here for you. My daughter is 4 and I know how you feel about your son. You will have better days when you can go to the cinema, when it's warmer outside you can do other outdoor things because you will feel better. I bought myself and my little one onesies and we cuddle up on the sofa or my bed with a bowl of popcorn microwave one or muffins and a blanket and we watch DVDs or films on TV. She loves our cuddles and this precious time together. We pretend we are at a very posh sofa onesie dress code cinema. I know it might sound silly but this is our little time we both really enjoy. There are lot of things you could do with your son without having to go out, we draw , read, colour in, make cards and all sorts of crafty things. I love gardening and flowers and can't bend down any longer so I bought an adapted seat and my daughter helps me all the time, she enjoys it and in winter we garden the indoor flowers if that makes sense. Anyway I'm going on and on and on.....
Gentle fluffy hugs x
Thanks so much for that reply she made me feel like shut a ideot for even askn about pip and she was the 1 that diagnosed me with fibro av been to rhuemy they did some blood tests ..then bf my next appointment to rhuemy the nite bf I landed in A&E with servier chest pains they kept me in over nite got out and went to my appointment at rhuemy she saw I had been in hospital and made a referral for a MRI ...onest I had the results they didn't want to c me again ....I just think that the doctors feel u have fibro ther is some pills and that's the end of it ..but av had that much going on with this fibro av bn in hospital more time in the late 3+ years than I have in my hole life xx
Lots of hot baths and keep moving. Straight up you have to push past the pain. Be staunch. You dont want to be in that place. Push through it find that ceiling and be a bit tougher than that.
Its ok to cry. Its ok to be angry- just channel it into excercise . Get to a spa its a treat. Ask around- people have friends who give nice backrubs. Offer them the going rate. Tell them you heard they give good rubs and you are sore, then hand them the good strong deep heat to rub on you ( dont do it after shower or spa- thats dangerous) Eat bananas, amega3, frolic acid and wheat grass juice.
Hi their thanks for or reply ..I do try to just get on with things the best I can I do have a lot of hot baths it duz help .its painful get in in and out but I do it ..av tryd to change things in my life like smoking I don't drink that just makes me worse ..I eat as healthy as I can but got to b careful with wot I eat av got stoumch problems and some healthy foods don't agree with me sometimes its a catch 22 ..but try in to b as healthy as I can xx
Hi amanda2277
I sincerely hope that you are as well as can be today? I am very sorry but I am not a single mum. However, I would like to offer my support to single mums and the great job that they do bringing up their children and affording unreserved love to their children and always putting them before themselves. Being a mum is hard work and it is hard work that should come with a salary from the state. After all, today's children are tomorrows tax payers.
Many single mums find themselves in an untenable situation through no fault of their own. I feel that today's society and today's politics penalise and discriminate against single mums but never against the absent father.
So to be a single mum with Fibromyalgia or any other disability is amazing! I am sure that if people knew how single mums with a disability cope they would amend their attitudes.
All my hopes and dreams for you
Ken x
Ken thank you so much for this amazing message, I know it's not for me but I just wanted to say thank you. It's so very true and before I meet my husband I was a single mum for years with two young children, lucky I didn't have fibro then. Amanda is doing an amazing job and she should be so very proud of her self and her achievements x
Hi Amanda 2277 you sound like where I was at 20 something years again when I was trying to cope being a single mum of 2 and nobody listening. When I ask my children what their childhood was like they laugh and say how often I fell asleep within 5 minutes of watching a film with them. The best advice I can give you is don't be to hard on yourself. Don't set your targets to high and when you don't achieve them, which will be often, just go with the flow. I kept on pushing myself and saying "well you have been told their is nothing wrong with you" you shouldn't be crying you just get on with it. WRONG. You have to listen to your own body and mind and pace yourself but also be adaptable because we all know that this condition can change from minute to minute. Good Luck and look after yourself because no one else is going to. x
Morning Amanda
My heart goes out to you how very difficult you must be finding it. Have you chatted to your surgery and asked for a health visitor to chat to. You need to find local groups that you can join for support. How old is your child?
Everyone has given great suggestions but most importantly you must look after yourself.
This site is brilliant always people about who care and you can release all those pent up feelings to. I hope you are dry where you live.
If you ever need a shoulder to cry on you may PM me and I will offer virtual cuddles and comfort.
Tale care
xgins
Hi ther gins thanks for ur reply my son is 10 hez a great kid welbehaved we'll mannerd wee guy hez brill .I think the hardest thing for me less frustration because I cant do the things I WD like to do I UST to take very Good care of myself loved going to get my hair don or just treat myself from time to time kp myself nice ..I just Dnt have the energy to do it...ad love to be doing more with my son aswel quality time have fun times ...on a good day I think all take the wee guy to the movies at the wkd by the wkd end comes am so tired weak and sore .u can't plan ahead because u don't no wot the next day is going to bring ..av have my wee auntie who is in a wheelchair and has problems of hur own and don't get out very much much now she has bn Good to me and we do talk a lot about how am feeling she is a Gd support to me in terms of just talking to hur about my problems she dose hur best to give me addvice and b ther if I nd som1 to talk to .an get it ff my chest if av had a very bad day or week she listins .because she nose how unwel av bn over the last 3+ years ..sometimes its just Gd to Have som1 to lisin ..xx
My son is 11 and his got used to my pain my moaning my being soar and falling asleep all the time in mid conversations but he is ok with it. He enjoys doing anything with me even if it's just a trip to Asda. It want like this away first and he used to get upset. U can't blame yourself and mustn't feel guilty it's not anyone's fault. You both will be fine. You just need ensure you have a good support system in place like pain clinic, rheumatologist, regular medication and adaptation in your home, car and work. What medication are you on?
What do you do at work? Have you had access to work come and assessed your work place for you?
X
My wee guy is great to hez a lovely wee boy and we have a great mother and son relationship we're very close but hez has a learning disability has from P1in the past hez had a very hard time at skooll with other kids ...between myself and the teachers it has stop t he has a great support network in skool and between last year and this year he is coming on great..hez getting ther..loves his Xbox or iPad but I just tel him am not feeling we'll or iam very tired but ano he sees it wen a try in get up to do anything here's me wen am really in pain moaning !!! Lifes changed so much through this illness I feel am not the same person and just want my life back ..ano we all do xxx
He sounds like a brilliant little man, well done to him and we'll don to you for doing a great job as his mummy. Your a very strong person . unfortunately neither of us can have our old life back but if think we both need to know what we can and can't do. I'm still trying to get used to it . I've only been diagnosed last year, I suffer with depression and sever anger. I loose my temper with my family all time because I'm so angry. Mood swings are up and down all day long on some days I go from angry to happy to depressed to crying constantly and I try to adapt and adjust my life around my needs but it's taken a long time. My son loves his xbox and iPad too. I'm grateful that he at least had me as healthy for a while better than nothing I think. I'm starting tithing that an awful lot nowadays. Have you looked in applying for disability benefit for you sons problems? You might be entitled to help. Please don't take this the wrong way but after working over 20 years full time and paying my taxes I believe that now that I'm ill I should be entitled to some help. I use my allowance to purchase helpful items for my house car etc. and I also give my 15 year old a bit of money for helping around the house with hoovering cooking etc. it saves me to employ a cleaning lady but I would do it if I didn't have her. I do push myself to go to work for 18.5 hours a week which keeps me sane. I go swimming to try and keep my muscles going and found that this is easier then other forms of exercise. They say that we need to relax to release the endorphins to feel better, music, swimming and cuddles are my little ways to do this, but if it's a really bad day I don't get to so any of these. Anyway, don't give up on the pip, your entitled to it. Have you registered as a disabled person? If you do you will more right under the ddc law in relation to work etc. if you need any help just shout x x x
Thanks Jules ano exactly wot or saying a get very frustrated wen I keep dropping things and forgetting things a lot ..av burnt my self a few times and fawling over and hurt my self swell and I get upset a lot if it not bad enuf we have all that going on were in pain all the time ...av just put my application in for pip a got in touch with my local housing were they have a benefits advicer who help me with the from I didn't have a clue were to start and a could have probley wrote a book on this illness and how it effected my life I worked all my life till 2011 wen all this started am not going to build my hopes up on getting it ..from wot av read people with fibro have to fight for everyfing when it comes to benefits but fingers xd xx
We'll done, I'm so glad that you put in for your pip! Good luck I really hope you get it. It will make your life so much easier. Send them in all your medical letter etc. if your struggling with the bath please get in touch with your intermediate care team and get an occupational therapist to come and see you. You need a mangar bathing cushion, have a look on the net, it brilliant. I've just had my first bath all on my own and it was amazing that I could do it all on my own. I even managed to wash my hair, and it really helped with the pain in my legs and my back. My memory used to be perfect, I used to remember ever word or every conversation ever, now it can't remember what I said 2 minutes ago. And I get the shaking and dropping things all the time. The OT got me a kitchen trolley, toilet fame a shower seat, crutches, bath cushion. Call the, ask for an assesment they will triage on the phone then out u on the waiting list, then the visit. The. All the equipment delivered. It makes my life so much easier. There are lots of helping hands aids u can get to help u get dressed, get in put of the car etc. be prepared to wait awhile for dwp. I waited nearly 28 weeks now at week 34 got higher rate daily component and waiting for mobility to change from standard to higher. I need this to have an adapted car so I can drive to work. ATM husband drives me and dowse most of the school runs for our 4 year old but when I do, the school let me in their car park and bring her to the reception so I don't have to walk too much. Don't be afraid to ask, most people are helpful. Apply for a blue badge if your fibro affects your walking. Mine is in my legs and I struggle to walk most days, I have a stick, crutches and a wheelchair for long days out or shopping in town. I don't use it always but it's always in the boot of my car. I can't get itin or out so I always need help it itself prepelard and easy to maneuver once I'm in it. Anyway I'm going on and on and on. But there's light at the end of the tunnel. Nhs has recognised fibro as a desiese and a disability so there is no reason why you shouldn't get pip. If you have to go to the assesment, take your medicine box with you, if you don't have one get a Dorset box, also if you need to pay for prescriptions apply for the prepayment card, it's £10.40 a month for10 months and has no limit of prescriptions you can get on it. It's a god send apart from free prescriptions. Any q plz ask. Xx x
Thanks Julesav sent in as much info that I had letter etc ...but ther been a lot of things that I couldn't send av had a lot of appointment s at lot of different clinic s but some take the appointment letters from ya wen u get ther so a don't have them av had lapocapy ...deen to gnyno twice ..and bn in hospital about 6 times ..but fingers xd ..thanks for all your help and advice ..I will let u no how I get on ..Amanda xx
You can ask copies of your medical records if you need them. Or even the receptionist to make you a copy if they need to take your letter. X x x
Amanda you can get a bathing cushion which is like a bath lift to help you get in and outlf the bath.
The occupational therapist in either the social services or intermediate care team can order one of these for you free of charge. It's brilliant. X
Hi Amanda I I'm 33 year old single mum to 2 children aged 11 and 9 I still work part time 16.5 hours in a kitchen. I was diagnosed a few weeks ago with fibro. I find my gp isn't helpful at all I have my first reumy app end of this month, I find my kids are quite independent and I make sure they keep their rooms tidy etc I've cut my housework down to one day a week normally a Sunday also my ironing I do one day a week, I'm normally shattered when I get in from work so I have a hour or so rest kids come home they empty their pack lunch boxes, ive just made small adjustments at the moment get them to make their beds help me wash up, just teaching them life skills really. I only work term time this is my first half term since being diagnosed, I have plans to do stuff with the kids but I've explained we won't be out all dày and I try to pick things where I can sit down and watch.
I don't get pip or ESA as yet haven't applied because I'm waiting to see what happens at my reumy app. It's really hard being a single mum and feeling so tired and in pain. I'm always here if need a chat x
From your thread on this it looks like it might be worth thinking about changing GP. It's emotionally charged but may be worth it in the long run. Google benefits and work. Have you tried Emma's pip self assessment thing?
Look at FAQ's and categories on the right. You're far from alone. Gentle hugs x
Amanda 2277 my heart goes out to u thinking of u were all here for u well all ave to invest buying a massive pieceland and all move near each other fybo land no visitors welcome ha ha boohoo xx
