Does anyone else’s family just say just get on with it (in a nice way) or go for a walk it will do you the world of good? My dad refuses to read up on it , says it scare mongers people . My mum is in my nans bubble shrs 95 (mum & dad) live together , I’ve got 2 children and really struggle with everything. It’s got worse , I can’t go to the supermarket, go on walks I just seem to in pain all the time . I only get basic allowance not even mobility (which is another issue) but I’ve finally realised I need a carer im only 42 but I struggle cleaning. Luckily my other half helps but he’s getting fed up saying I’m lazy etc he does everything. He works too , so I feel for him . He does apologise after but it sticks and makes me feel worse and I have told him .
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I’m just on basic £59 a week. So many days I can’t even get out of bed.
Hi dottie, its so hard when friends and family dont understand thats for sureFor privacy reasons you may want to lock your post this link will show you how.
healthunlocked.com/fibromya...
Please read the link below. This will give you the information on how to get intouch with our own benifits advisor Janet. Hopely she will be able to explain if your entitled to monetary help you may be missing out on.
healthunlocked.com/fibromya...
Momo
anyone who refuses to inform themselves about an illness has no right to put forward an opinion . so next time he makes any remarks tell him speaking from ignorance is the act of a child . i would strongly suggest seeing a benefits advisor and applying for pip . best of luck to you .
Bless you thank you xxx
My family are very nice but they can't help, both my parents are shielding and my husband works full time. I have a 2 year old and a 6 year old. I'm having to manage the house and the home schooling and the 2 year old. I don't qualify for any benefits so am totally dependant on my husband.
I like what ALKT said about speaking from ignorance being the act of a child I think that is very true.
It’s so hard isn’t it xx
Yes it's crippling, I'm shattered this morning too bc I haven't really slept for the last 3 nights because one of the various other conditions that go with fibro. Its horrible bc you keep thinking when the kids get a bit older it might get a bit easier and then you feel awful bc you're wishing precious times with your kids away.
Exactly , you feel your missing out. Playing in the snow etc xxx
Hi!
Since I am not fibromyalgia sufferer, you would think that I have no right to comment, but I feel that I should confess...
My mother suffered on "invisible" and "inexplicable" syndromes, which nobody was able to understand, including me. She, as far as I remember, had restless legs syndrome, Sjogren's syndrome and Parkinson's disease, all together. Nobody believed her that it is possible to look "normal" and still to be sick. At this time, in 1990-ties, nobody of us had enough knowledge to understand it. She passed away in 2003., still seen as somebody who was searching for attention with all she complained about. Now, I feel ashamed, not to have believed her.
My research in the past 12 years has brought me to the point where I am now. As for the people with fibromyalgia, it is not "all in your head", your trouble IS real, and I may be the rare one without this problem, to understand what's going on with you, guys.
Regards!
P.
Please don’t feel ashamed not to have believed her. I’m so sorry xx
Thank you! I feel guilty, but in moderation. My revenge to all kinds of Dysautonomia is jet to come! Regards!
Oh God, I am sorry about that, Dottielotti. Here is the thing. Anxiety is on of our major problems. Family members like that do not only induce anxiety about convincing them and their feelings, but also induce guilt. For me, if I row or have a disagreement, that is a sure flareup which could last to 3-6 months. I made them read about it, I gave them most of the literature I could find. I also showed them articles of people far worse than me. The others, I cut them out. But I am at that age where I could do that while you sound like you still have a young family. No one is worth bouts of panic attacks. You can love them at a distance. Here is the kicker, one of my most unforgiving relatives has started to develop symptoms. I worry about how he will cope.
Sending love and thank you 🙏
Take it easy with yourself. It isn't the end of the world if laundry isn't done weekly or dishes aren't put away. Only effective way to educate family is to do so calmly and insist "today isn't possible for me". I feel guilty but it must be done to grace everyone with appropriate expectations and to minimize disappointment.
I found pacing helps a lot. I live alone and have no help. I clean when I feel able to and if I only vacuum half the room then that's better than nothing. I prioritise the bathroom and kitchen for hygiene reasons. Just stopping for 5 minutes and properly relaxing can mean I can go back and do another 5 mins. It's so satisfying still being able to do everything myself even if it's in bits.
Hi! This post made me sad 😢, my partner is fantastic but does come out with some remarks which he says he’s joking but I take that to heart! Words stick- and each word someone puts you down with adds another brick to the wall. I’ve been a cleaner for the last ten years, so my house has always been pristine. Now I’m being defeated especially with my children home all day. There 8 & 12. And it’s still not easy! But you have to mentally stay strong for them throughout COVID especially.
I always tell people, I don’t want attention or sympathy but just to understand the new me. If they can’t take time to get to know the person I am turning into and changes in my health then I’m sorry but they obviously have no real love or care for me. Keep strong x
Bless you 🙏
You do have to make the family read even some of the quotes but more importantly the cast list of symptoms of Fibromyalgia. The one quote is "it is like having a permanent case of flu or having just run an ultra marathon". Find the list on Google, print it out and highlight those that apply to you: I.e. the different types of pain, the total fatigue where your legs won't even carry you, the throbbing in your legs, or hands, or head, IBS, itching skin, brain fog, forgetting words, getting disoriented when out and about, weight gain, dry eyes, dizziness, bad or little sleep, feeling ill if you do too much and all this on top of pain that most people would not be able to function at all with.
If both your Dad and your other half cannot do you the courtesy of reading how many others suffer this debilitating condition, then they have no right to comment and should be told so. It goes with a whole list of other invisible conditions/diseases and is far more recognised these days. The worst thing is we have no reason to feel guilty. If it was cancer you would immediately have people trying to help you. There is a 'Letter To a Loved One Explaining Fibromyalgia' which you could google and print and hand over to the men in your life which might get them understanding the depth of your health problem. Do hope you can get your Dad to read and empathise.
Hope you get the help you need to get the benefits you deserve. Hope tonight you have a reasonable sleep and find sufficient energy tomorrow to start a campaign of opening your family's eyes. Wishing you good fortune.
That is very very helpful thank you, I will google it now 🙏
I really get where you're coming from until my daughter showed me an article last autumn i had been living with multiple symptoms for over 50 years. According to my mum(rip) i had growing pains. I should pull myself together we all have periods stop moaning. I had a terrible sick record. And felt a general failure. I researche fibro and was shocked at how many boxes i ticked. So gave new gp my thoughts. Had a phone call saying highly likely. My husband has rapidly gone from need to lose weight and get fitter. To being allot more understanding. He still gets frustrated and huffy and coments about doing everything but allot less.
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