Do you have somebody who cares & supp... - Fibromyalgia Acti...
Do you have somebody who cares & supports you on a regular basis either from a care agency or family member? This is a multiple choice poll
I have a care package with my local social services department / local authority. I have a carer come in every day of the week. The time allocated varies from day to day as I have a social call and domestic call on Thursday’s and my main meal of the day cooked in the evenings. I get lunch 4 days a week as well. I also have a carer call to administer cream to bodily sores every morning. I have to pay toward the cost of the care but it is worth every penny. My son and daughter also help out if I ever need them as well, they are treasures and I love them very much,
I'm so glad you get on well with your caters. I used to do that job in home care and a nursing home. I know how media is vilainizing carers at the moment and how devalued we can sometimes feel )usually by relatives and society rather than service users)
It's great to hear something positive. Some carers do feel more like there seeing freinds than clients
Hi Aelin Thank you for that my friend. I tend to have the same carers now and they are really good and attentive. My main carer is absolutely wonderful and I cannot fault her. The others that I have are really good and will do anything that I ask them too. The hardest part was training them in how I like my cup of tea! But they have that right now 
I think a carers role is so vital that they should have a higher prestige and salary, and should be given more respect for what they do to help others
Hi theauthor the cup of tea comment made me laugh, I used to work night shift there was a woman who I assisted in getting up in the morning, bless her there was only myself and one other carer she would allow to make her porridge. She claimed the others couldn't do it properly.
That care package you get from social services where your allocated so many hours a week is a god send. Ive had my carer now for going on probs 4 years. Im one of the lucky ones managed to get decent hours in the week. Ive got over 17hrs mon to fri at moment but you hear some horror stories where they have been allocated like an hour a day so there in out rushing about.
He lives with my pain everyday day too, couldn't survive without him
I live on my own, but my daughter keeps in touch (she is in another town)
I live with my son who helps me on the bad days. My marriage fell apart because of this illness
So sorry to hear your marriage didn't survive this horrible illness,but it sounds like you have a wonderful son what a blessing he must be .xx
So sorry to hear
am so sorry to hear that. my ex-husband didn't care either. was very glad to lose that 13st of dead weight or I wouldn't have met my soulmate who looks after me wonderfully now!
My husband helps as much as he can, but doing shifts it's really hard. I also have a son who will do little chores if I ask him to. I would be so lost without them.
I have 2 children who care for me on a daily basis
I have an angel on my shoulder, we've been together for 45 years, thank you to my wife Sheila
My husband is my carer he does his best but is in poor health himself, he has arthritis in both knees and has low vitamin b12 so suffers overwhelming fatigue so really we look after each other but it's hard being 46 & 50 years old.
I feel your pain. It's the same in this house. My husband and daughters (both disabled) needs come before mine
Is there not any other help available to you? Xx
Sending a hug your way ,you have a lot on your plate . X
Same here. Different illnesses for hubby but same situation. Still wouldn't be without him, he's my rock.
Stay strong.xx
I rely on my husband who without him I would be trapped in my home all week. It doesnt bit5her him that its him who now cares for me and does all the chores.Thankfully he has cut his working days to two now.Most family don't bother. I used to have district nurse call but my husband is now able to take me to doctors .
My 8 year old helps me as best she can
Poor kid. I hope your child is getting support
God. Why do I always get knocked back on here !!my child wants to do she only does things she's able to do anything else that's medical the hospital or Dr does ....And yes she does get support from her school as a young carer she wouldn't do anything she didn't want to ...I am a lone mum be different if I had a partner and before anyone says anything else her father is in China and I didn't ask for these illnesses !! Sorry everyone else for this rant...
Don't take it as a criticism, as a carer herself, I think wordonthestreet2006 is just feeling for your daughter. Nobody is saying she shouldn't help you and they don't know your situation health wise.
It's great that your daughter's school are a being supportive and I'm sure that must make a big difference to her. I helped my mum at 13 when she had cancer (and later when she had severe RA). I felt much better being able to do something to help her, for me the hardest part was seeing her in pain.
These days there is more awareness and support for young carers and there are a number of organisations out there that she might find helpful either now or when she starts senior school.
Take care, gentle hugs x
My boyfriend
I haven't got that far into the sistem to find out if I am elegible for a anyone to help with my needs yet, I did have in spain, now as I am moving to a rented property next week and am not able to do many things around the house. So next move is advice center.
I just get on with it as I am a full time carer, I don't feel I have a choice. My needs come last in this house
Yeah I totally understand that. Gets me down sometimes.hope you're ok. Stay strong ☺
My husband after he does a full days work. It is making him ill now though
My husband does what he can. I still manage to work part time but need to rely on the other members of staff to do simple things for me like do up my shoes if the velcro fails or take off my sweatshirt if I become too hot. They are gems and don't mind, or at least don't say if they do. Personally I think I would suffer more if I did not manage to haul myself into work.
I am lucky enough to have an ICU nurse as a wife who just does two shifts a week now. I have commented her bedside manner could do with improvement but I get short thrift!😂😂😂 I am also blessed with a caring fourteen year old son who is my legs for getting things around the house bless him. In addition I have a ferociously protective cat who sits by my side and won't let the others near me on a bad day. Apparently he swipes at them if I am sleeping and they come to check on me! Lol
We could all do with a cat like that! 🐈
My husband doesn't really help me at all - he thinks I am making it up. So if and when I need more help it will probably be my kids who have to help.
It's upsetting when people don't believe you isn't it! I've had a good friend say"oh come on now your just being lazy"!!!! That really hurt also my last partner left me! He wanted me to look after him couldn't cope with doing anything for me even making me a drink! I guess I'm better off without someone like that xx
I work hard at staying positive easier said than done some days today I am grateful for the wonderful sunshine coming through my windows ☀️☀️☀️☀️🌈☀️☀️😁
Thank you - I am busy planning ahead for a life without him if necessary - secret 'running away fund
Hi Kta I'm in the same situation, my husband is a strong person,never taken a day off work ill, he just gets on with it. Therefore he expects me to as well. I wish, just once, he could feel as I do, then he would know. They just don't understand, not their fault, our illness can't be seen. If I had a broken leg, he would be so understanding. What can we do? Mary x
If I did not have my wife I would have to get rid of myself as I wouldn't be able to cope.
Sometimes I need care. Sometimes I dont.
I could use someone for cleaning as its getting increasingly difficult ,my hub is wonderful but he works in the NHS and at the moment it's a very stressful for all concerned .He does more than his best for me and I really appreciate him and tell him so often
.It must be so hard for our loved one so I try not to talk about all the things I have wrong to him because it makes me feel down and I don't want to burden him ,but he knows when I'm really not well because I'm quiet .Like I'm going out this morning and he said he will get tea because I won't be able to . xx.
I am lucky to have a daughter who willingly pays for my cleaners once a week. It was getting so stressful to see the house getting dirtier and shabbier and to be able to do nothing about it. My OH did the vacuuming but not well and he hated having to do it, so it's a win - win situation.
I hope I don't make it sound as though he doesn't look after me because he is fantastic in so many ways. I would be lost without him and that might well happen sooner than later since we are both in our 70s, so I count my blessings. xx
My husband and 2 sons (ages 15 and 20 ) help me as much as they can. Helping me to stand, get upstairs and cooking but they all still expect me to do all the other household chores. They're all lovely but I don't think they quite understand the utter struggles and pain I go through just to do the most basic of things. I love them all very much and I know they love me too so I'm very lucky.
Could not cope without him, he is a Star.
My husband and son both help about the house.
My partner is my sole carer. he is really good with me. i hate having to rely on him for everything but he keeps reminding me he said in sickness and in health when we got married lol
i mean things don't always get done 100% of the time because he's only one person and looking after me and trying to do all the housework as well as helping my mother with her housework as well takes it's toll on him. he likes to help the mother in law out and also he likes to take me there while he does it so that i get out of the four walls for a bit even if it's just to my mum's- my mum is fast approaching 70 so she really appreciates it too. he's a model husband and son in law. i couldn't have chosen a nicer person to marry me. i made a good choice! i love him to bits and wouldn't be without him- even if i was well i'd still not be without him. we've been married nearly 6 years now.
My daughter supports me through my difficult depression, and chronic fatigue, she s so uplifting. My son does what he can, 17 and In love.. Both amazing people 💜💙
I have a cleaner, and my son and his partner do a lot. Cooking shopping, taxi driving. When they went on holiday realised how much they do without me realising. Not sure how I will cope when they leave.
My daughter and my son support me, cooking, cleaning and shopping......... they are careing and supportive....... wonderful young people....always taught kindness and love in their childhood..
I live on my own but my family live close by...and visit everyday to ensure I have everything that I need.
My daughters help more than hubby thankfully it's only when I have my worst flare ups.
Hello. My husband and I both have fibro. However I have other delibating illnesses as well. We take care of each other. He just developed fibro last year. Whereas I have had it for over 20 years now. Yes to me I don't know what I would do without him. He's my nurse,cook, housekeeper, and so much more. We've been married for 36 years and we've always helped each other through everything. I thank God for him.
I live with my 18 year old son who helps some but my 35 year old daughter , who lives in the same town, helps me a lot by doing my laundry and she helps me do the things I am unable to do because of pain or limitations from fibromyalgia and neuropathy. They are both a great help and i don't know what I'd do without them
My partner helps when he is able to. He can't live with me as there are issues with the property that affect his health. I can't use the bath or shower in it so have to have daily strip washes at the sink. He takes me 45 miles to his mum's where he lives once a month so I can use their walk in shower room. I don't use the cooker much as I have had accidents. I have simple dinners such as microwave stuff, sandwiches or simple things I can make using boiled water. My partner takes me out for "proper" food when he's not working. I don't really eat properly as it's hard to cook in a kitchen full of mould and at the moment it's about 12 degrees because of the back door not fitting. I'm going to the local council to report the landlord as this has been going on for over a year now.
My husband is my main and official carer. But he also works part time and has many health issues himself so it's not an easy life for him either. Despite that he is a very caring person and I'd be completely lost without him. Luckily we've always had a good partnership, in sickness and in health just as our vows.
But we also have a lovely friend who has Chron's disease herself so she completely understands chronic illness and it's impact - it makes such a difference when people get it. She regularly comes and does some cleaning for us or helps with shopping, lifts to and from appointments and the like. And we do as much as we can to support her as well as she is a chronically ill single mum bringing up three teenage kids. Hubby can return the favour with diy, lifts and male support with car repairs etc. From my point of view it's mostly moral support for her but it all helps (I hope).
My elderly mother and I try to care for each other. We both have several medical conditions and thankfully we have managed not to be incapacitated at exactly the same time, so far....
I had to return home from University at age 20 because of serious illness which resulted in disability - rsd/crps. I was unable to return or live even a remotely normal life from that moment on.
So, my parents look after me - my mother being my primary carer, I suppose - she would just say she is being my mother.
I feel immensely guilty - am getting more and more disabled as the yrs pass, have more health conditions being discovered ( heart problem/stroke/fibromyalgia etc ) - and it really should not be that my parents are still looking after me at 43yrs of age. At their ages, I should be helping them out and making their lives easier, not giving them more work and stress.
But I know I am very fortunate as I could not live alone and care packages are almost non-existent these days.
I would call survival while being ill and incapacitated a full time job in itself. That is what I always tell my blood relatives, each of whom is ill with various permutations of the same condition. I know from experience that feeling guilty is a problem for each, but that it is part of feeling frustrated generally, and that all feelings of frustration are basically negative stress (the feeling that you can't do the things that you need to do). Stress makes our conditions worse, so dealing with the stress is very important. I communicate with family on the phone because I live far away, but we help each other enormously by giving each the emotional support that they need by talking, relating, empathising. Really talking, and really listening is the most important kind of support and help that there is. It helps us body and soul. We are very lucky in that we all understand one another very well and so can support one another in the best way possible - emotionally. You are certainly doing just that with your parents. Compared to us, most people effectively become distant - out of reach when they leave home. Like me, you are not distant from your parents, because you are there with them, talking, needing, fulfilling there lives, in a way that is now usually lost when families separate from each other. Like me, you don't need to feel guilty about being physically dependant because you compensate with the most valuable help toward happiness that there is, company.
I replied other but they are family.
I feel that I am very lucky as I have a very supportive family .I managed to keep working up until a couple of years ago even though I have RA, but I was then diagnosed in turn with PTSD, then pulmonary fibrosis and fibromyalgia. My husband to begin with was my main carer with my daughter now 17 helping me when needed. Luckily my son and daughter in law live across the road so see them everyday. My husband had to work away from home part of last year and my youngest son and his future wife moved back in with us especially as my daughter was sitting her gcse,s and we didn't want her to have any distractions from her studies. As they work shifts and husband is back home and my eldest son and daughter in law are sharing maternity leave I have help and support when needed 24/7 . So I do feel extremely lucky.
These conditions though life changing and disabilitating have increasingly made our family closer and, because my children were 2, 15 and18 when I was diagnosed and helped out a lot especially in the early day's as they now do these day's I actually think that the experience has made them more compassionate, respectable and caring people.
Everyone take care Linda x
My husband takes care of anything I have any issues with at all.I do what I can for myself...it's not always easy but I will do whatever I can for myself as long as I can.I have other issues besides FM that cause me to need his help. Peck.🐤
I didn't even know I could get care, I push on with the pain, I think I do too much. Because I do this My Husband expects me to help with our grandchildren, which exhausts me. My anxiety levels are very high and I'm getting panic attacks, I think it's a ' tired overwhelmed brain'
totally on my own
I tried to apply for care last year and was told it was not available for working age. My family often pop in, but don't help much, but I pay a lady to keep my home clean and help out.
I live alone. So far managing person am care and housework in between bad days/periods --and with much lowered standards--. Some friends do keep an eye on me and help me when I need to get to an appointment, but so far, I haven't had the courage/energy to look into some 'official', regular assistance although if would probably free up some highly valuable energy fir me, to be used for better pain Mgt, or better life qty, allowing more pftenergy (pain free time+energy)!
I don't atmo but will need some help as get short term memory issues plus other things over also having a mild stroke and Asperger's
do i need to say anymore? i do dread the thought of having to go into aresidential or nursing home though..even these so called villages has their drawbacks.
I don't have family members that help me, but I do have a wonderful support group around me that provides me with the majority of things I need.
My 27 year old son has put his life on hold to be my (unpaid) carer. We live on my old age pension and Low care DLA.
I am my husband's carer. He is (for very good reasons) a recluse, with mental health problems, so it is impossible for me to organise a carer. I would like help with cleaning the house. Periodically he helps with lifting heavy things and cleaning if he is well enough. It is a hard life sometimes, but we muddle through. I would add that he gives me a great deal of emotional support, and I get a great sense of fulfilment when I am able to provide the same for him.
Afternoon all because of my illness, s I have not worked for about 4 years if it wasn't for my wife working full time at a special needs school .I don't know how she manages to do that then come home and do the jobs that I can't do any more which gets me down even more . At the moment I am stressing out over a tribunal hearing on the 17th March had one before in 2015 after a 2 year battle which I won thanks to a friend who sadly past a way in august last year to the big c . Am I the only one who feels useless knowing that I should be the one going to work still and doing my bit too help her. She tells me not to worry about things we,ll get by but just feel useless. Love her so much
Being ill is a full time job, but we are available for the most important thing in life, our communication, empathy and support for our friends and our loved ones - and wow, because we have time that communication can go so deep
Hi Flem1962. My husband lost his job through an injury nearly 20 years ago so we switched roles and I went to work full time and he did what he could at home with me doing what he couldn't do when I got home from work. Unfortunately my health deteriorated 3 years ago and I lost my job through ill health. What Im trying to say is we work as a team and what one can't do the other will do. I sometimes feel useless too and just want to shut myself away but then I think of him and what he does for me and I dont want to let him down by giving up. I have had similar battles with tribunals etc its really stressful isn't it and probably made harder because of grief for your friend. Have you managed to get support elsewhere like cab or benefits and work? sounds like you have a strange marriage and support each other. How lucky we are to have such love. Good luck with your tribunal. Hugs Joolz.x
I have found this discussion very interesting, thank you for starting it. It gets to the basis of what life is really like, what is needed and what is good for us all, collectively.
I currently have no one to help me at home as such . My separated husband helps me to shop when I'm able to get out . Usually tho I get a delivery . My eldest daughter lives at home and does help with housework now and again .
Mostly I do it myself .especially the two gardens and most of the cleaning
It's nice to have someone who cares these days families don't have time and then again you don't want to pressurised them.I have niece who helps and sister but there are times wish you could get the understanding just been they for you. Many wants to help you but you can't contact them becuz of politic comes in between.
I have aways help and when I could I have given them an ear but when I needed a chat no one was they.
I find to walk from bedroom to toilet becuz moon pain.
My son helping now .having to move to be near him as travel is not an option as four hrs there and then four bk . his business means I must relocate . don't know if can request help from benefits for packing and relocation . worry it going to be expensive .
I've had problems for a very long time and my husband has helped where he could. Since my fibro diagnosis he has read about it, taught himself how to give me a 'fibro' massage, fitted grab-rails around the house and been to all my appointments with me. Today he presented me with a drink - turmeric tea...LOL...do you think he's desperate to cure me!? The tea wasn't that bad actually...strange but not that bad. Hope you're all having an acceptable day.x
I didn't realise just how much my hubby did for me as I thought I was "managing". Then I realised he opens cans, jars and bottles. Helps with chopping hard veg, not to mention the housework I find harder to do
When did this happen? 
I have a sous chef hubby too. Has never done housework. He pays for a cleaner instead
My husband
Without him i couldn't do anything my daughter live about 10 minutes away but my son's one lives in the city he works in he and his girlfriend when they cermrmt. The same shift off. My other son livesbmiles away haven't seen him in years
My husband gets all my meals. I have a cleaner once a week but my husband does not understand my illnesses at all fibro/ cfs osteoarthritis, epilepsy, osteopenia oh and the list goes on but we just have to keep on keeping on.I feel like a prisoner in my own home.It really hurts when my husband tells me that there's nothing wrong with me and I'm just lazy. I would love for him to experience what I go through everyday.
My ex husband used to tell me the same about laziness etc. Get your GP to speak to him one to one and see if that helps
I wouldn't cope at all without my husband. He does everything and doesn't complain even when he has pain himself. My rock and soul mate.
only get help with appoints, have thyroid disease too and fibro makes it worse..always feel ill, chronic headaches everyday,hate waking up,
I have thyroid trouble, along with ibs, migraines, restless legs, and fibyromialgia. The pains are horrendous and the fatigue.I still work the no energy is very bad .
I have a very caring husband who supports me in this. I also have a friend who is my carer. Find my husband is a better one.
I don't get any help apart from my husband. He holds down a full-time job as well as looking after me
When I need someone as it depends on fluctuations of the condition. It is my friends who help me.
my partner doesn't understand and thinks it's all in my head
My husband of 41 years Hoover's and sometimes cooks meals when I have a bad day.i could not do without him.He has just been diagnosed copd so it's not easy for him.
without my wonderful partner, I would not do as well as I currently do. He is a diamond with a heart of gold.
My partner is indispensable to me, I would be unable to function without her. Pain is all consuming and my thoughts wander and I find myself just sitting and feeling sorry for myself.
No ones interested
Get understanding from friends who know about Fibromyalgia as I also have a brain injury ime not very good at asking for help
No I don't get any help from anyone, not allowed to mention my problems, just told to get on with it!
only me husband when he is home from work
My husband helps me out when he's not at work, kickboxing or helping out his dad who is really poorly.
