People with opinions about how I shou... - Fibromyalgia Acti...

Fibromyalgia Action UK
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People with opinions about how I should live my life

β€’23 Replies

Just visited a friend of my husbands with the family. Had a nice visit, until he told me I should just stop taking all my supplements, and live my life and enjoy it and not worry.

I found it difficult to not jump up and choke this friend. In fact, right before he came I almost passed out from the heat getting me. I tried to explain, but just stopped trying.

Why are there so many that just dont get it? Even my own brothers and sisters.

He actually said, how do you have any fun? Which I responded, its very difficult. I am in pain most of the time, and cannot be in the sun very long. Plus, living on an island with beaches that I used to go to, is painful to my spirit.

I guess I just need to let peoples ignorance go. I was blessed with an overcast weekend, and didnt stay out in the sun much, but went to a museum one day.

He is right. What can you do? I am tired of this..:(

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in reply to Hidden

Thank you. I just dont know how to explain anymore. Not only do they not understand, they dont even hear what I am saying.

in reply to Natura

I am with you on that one. My daughter in law rang me last week to tell me I should have B12 injections and I would be fine. She was so adamant my husband forced me to get a blood test and I am not deficient in B 12. Daughter in law thinks I should demand injections anyway. I am one step away from wringing her neck! Nobody seems to understand.

in reply to Hidden

Yes, you could explain the punch as a sudden uncontrollable muscle spasm!

Very common with fibromyalgia! πŸ˜πŸ˜‰πŸ‘

in reply to Hidden

Love it!

Do not entertain another thought of him. The beach is my place of serenity, and even if it's under an umbrella, I go. My family is the same, and people don't understand if they don't have it. I still carry out hobbies , but it's limited. My arms get so tired, and my hands if I'm painting with my acrylics. Just be true to yourself, and know that this forum I call our Fibro Garden, is a place of peace and solace. Have a cup of tea and gather things dearest to you, and you will persevere. Gentle hugs dahling !! πŸ€—πŸ™‹πŸŒ·πŸŒ»πŸ„

in reply to Beachgirl47

I did go later in the day to the beach. And sat under the umbrella. Felt bad I couldnt go swim with my daughter, but her friends did. Thank you for making me feel like I am not making it up in my head.

in reply to Natura

Just always remember those oblivious to what can go wrong are most highly disappointed, and unable to cope. We all have highs and lows and with fibro it's dreadful how long the lows can go, but at least we strive. My family doesn't get it, but I just keep it to myself but my hub gets it, and my kids too. Siblings and so on, no, but my faith leads me. I am a Christian, and I know in my heart God has this. πŸ€—πŸ˜‡πŸŒ·πŸŒ»I'm on holiday now, but I'm doing aquatic therapy today and beach again tomorrow. It is a struggle .. hugs dahling! XπŸ˜˜πŸ™‹one arm at a time.. hehehe..

I'm sorry they aren't trying to be more understanding. I think people enjoy their bubble, were they can't imagine anything different from their own experiences.

I don't explain much to people, i don't have the energy recently. I usually just say i have muscle issues were they are sensitive and painful. Which people usually leave it at that.

I don't think a lot of people can understand the complexity of what we experience.

Keep taking what works for you that is for sure!

Take care of yourselfΓ—Γ—

You should not need to explain your illness, no other condition requires explanation. Hidden is right, you can also add that its a disorder of the central nervous system with no cure as my neurologist informed me xxx

People annoy me sometimes it is their ignorance that's upsets us and yet they dont wish to be educated but feel they can educate us!

Since being on so much medication I have put on so much weight and I am sure they think I sit there all day eating cream cakes! My neuro said pain or no pain and weight gain.. your choice ( for another condition ). Well erm I dont like pain!! I try everyday and eat healthy but can't go jogging due to extra bones in ankles that rub on the tendons and swell ( bah who jogs when in pain too and too old for that now lol) and if I walk too much I can't walk next day... I try to stay happy and I am pleasant to others having suffered/suffering myself... but I will get my husbands families glances and comments ( they are all like stick insects (skinny) and healthy ) it makes me feel so unhappy and sad along with worthless ....

But no ... we are just very unfortunate and we battle everyday .... so who are the stronger people... we are!

Oh and sorry they think we enjoy being like this... who said you have to be like them... ignorant, narrow minded, insensitive, arrogant ... etc....we are unique in our own ways

We remain polite in pain

We suffer in silence

So go fibro buddies... we are the better ones so hold your heads high ( when we have the energy lol ) and stuff the ignorant ones!

Just wear your beautiful smile Natura and talk to those who really care...... we do x

Love and light x

in reply to JacquiRo

Extremely well put! I have early onset arthritis in multiple joints including hips knees and spine (At 62 not sure about the early bitπŸ˜‚) and my osteo guy said I would benefit from weight loss. This was 18 months ago. So... I joined a well known club SW and, yes I've lost weight - 3 stones in total and guess what .......he was WRONG! My pain is no better in fact is probably worse. But I persevere simply cos I am high risk stroke as had TIA 8 yrs ago. I try to be as stress free as I can and take things at my own pace and if others can't or won't try to understand that's their problem, not mine. I refuse to be dragged down by what others think or say.

Oops sorry that rattled my cage ... don't ever feel second best natura or made to feel like that. You have your position here on earth... I'd choose you over him any day!

Right I had better get off my soap box lol

Love and light to you x

Someone asked me the other day. Why can't I just take a stool in the kitchen and cook. Yeah I could but my sofa and bed are the most comfy options and even then it's a hard choice as both of them with fibro is better than nothing. People really don't understand and I don't think it's because they don't want to but they generally are not educated enough to say the right things. It's like telling someone with depression to just cheer up. It's like asking someone with a broken leg to just walk it off.

But you don't look sick is another one.

Oh I'm sorry I don't look Ill but you don't look like your ignorant so we are all surprised then.

Just don't worry explaining yourself. It's not your fault and I'm pretty sure you've tried everything.

Good luck

Ann Marie

Oh I'm sorry I don't look Ill but you don't look like your ignorant so we are all surprised then.

:) Yes!

Hi Natura, I'm not sure if this will help but I managed ( with help from my kids ) to print out a little fibro leaflet which I give out to people in this sort of situation. If I knew how I would upload it here but being a techno-idiot I shall type out the words for you instead ( if you could bear with me ).

Here goes . . . .

THIS PERSON is living with an incurable, debilitating, invisible chronic pain illness called . . . FIBROMYALGIA.

This illness causes widespread pain, chronic flu-like symptoms, cognitive dysfunction, depression and relentless fatigue.

Fibromyalgia cases dysfunction of the nervous, muscular, integumentary, hormonal, digestive, urinary, immune, endocrine, reproductive and lymphatic systems.

Fibromyalgia is widely misunderstood by the medical community causing lack of compassion, lengthy diagnostic waiting periods and very few treatment options. Many patients suffer from accute mental distress for these reasons.

Fibromyalgia affects 2-5% of the worlds population including women, men and children.

(Please note I have copied this out so hope all info is correct.)

Lots of hugs and hope this can help xxx

in reply to Fallabella

I like that.

Oh the arrogance and ignorance of some people! And no, he's not right!

You're right, we do need to just try and ignore the ignorance of others but I do understand it's easier to say than do.

Would he tell a cancer patient to just stop taking their medications, including supplements, or someone who has mental health issues to just stop taking their meds and pull themselves together, or someone with arthritis to throw their walking stick away and 'suck it up'!?

Actually, some people like him probably would. But that's because they are the ones with the biggest problem of all - lack of empathy or compassion-itis. Sometimes people say such silly things because they think they want to help but don't really know what they are talking about. Sometimes they say them because they have a perfectly healthy life and just don't understand what it is like to be permanently ill. Sometimes, just a few of them are just nasty people.

Whatever category they fall into, it would help everyone, not least themselves, if they engaged brain before talking.

Sometimes it's worth pursuing the conversation and asking people, well what do you think my symptoms are and then why do expect I find it difficult doing fun things when I suffer those symptoms. Try and get them to put themselves in your shoes. But other times it's like banging your head off a brick wall because they clearly don't WANT to know, they seem to just like the sound of their own voice.

You can't win with some people. To them you're either moaning and whinging all the time over nothing, or you can't really be ill because you look fine and look happy most of the time. And it's not always easy to judge whether the person is worth spending your precious energy on trying to explain that yes I am ill, yes I am always in pain, but no I prefer not to be miserable if I can help it because that makes me feel worse.

Over the years I have decided that if someone doesn't seem to want to know and understand, or doesn't have the capacity to relate to my situation, then I just ignore them because they are just energy vampires that will make me feel worse and as such are not worth the price of my precious energy.

Rest assured honey, you are not the one with the biggest problem - he is!

Be kind to yourself, gentle hugs, Margaret. xxx πŸ€—πŸ’œπŸ€—


😀😀😀 why are being so ignorant! I know it's so difficult but this is how I look at it: I bet there are loads of illnesses that exist that I don't know about but to those people that illness is there whole life. I would like to think I would be compassionate but I do get it. If you didn't have this illness could you imagine something that makes your whole body hurt; you feel so tired you can't even blink; you experience 100000000 emotions a day and that's just the surface. I suppose it's hard to comprehend! Anyway, not defending them, they are still idiots! But when I get annoyed I tend to feel worse haha so just to try and help you out πŸ’œπŸ¦‹

I get fed up of people say , oh your looking really well are you better now.

Thank you everyone for your kind and caring words.


Morning thanks for sharing that story pure ignorance why don't people keep their negative thoughts to their selfs think before you speak I say many people stil don't seem to get it thats why we chat on her because we know what your going through and many are stil coming across this. Think it's hard when your nearest dearest are not listening and your trying to get it across hard work I think. Have you been on here long I'm still meeting and getting know everyone I do find it helps cause I too cried at weekend everybody went off and enjoyed themselves I was left at home all Sunday it made it worse to go on my Facebook page and see friends my age out and about in the sun. I too now struggle when it's hot thinkin late spring or early Autumn now is my favourite time of year. I hope he trips over his own feet whoops got our love support keep chatting feel free to let it out yasmintina xxxx

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