This is my 1st time here and I've never written a blog so I hope you'll bare with me.

[Eule]

Yesterday I had a comment on a post on my Facebook page, which I found quite upsetting.

The post was: You never know who has a disability you can't see.

The comment I got was: Sorry but gonna have to say summat, i too have fibromialgia also a heart condition, my daughter has scoliosis, my husband has arthritis head to toe. and we don't claim a penny. my husband works 40 hrs a week as do I , i walk upto 10 miles a day with my job. i do understand that it is painful, and gets you down, but it is a mind over matter. you have to keep going, or you might as well just give up. i di understand. but please stop shuvving this in my face everyday.

Now I appreciate that some of us are worse off than others but can someone please explain to me why there is such competition, as in who is the worsed off.

I attended a support group for a while but found that unless you're face fit's there is no support to be had. I was actually told by one member that I couldn't be suffering from FMS as one of my symptoms is anxiety.

So all in all the over riding experience I have had is that other sufferers want sympathy but are not prepared to support you when you need them.

Am I the only one who feels like this ??????

[SuzySparkle]

Hi, you are not the only one who feels like this - and the post was abrupt to the point of rude. However, that belongs to them - and it best not to (not easy as I do the same thing) taking it to be your issue. Everyone is different - everyone is a different stages of the illness and experiences something different because we are individuals. However, only you know what it is like for you and sometimes trying to share that is soooooo difficult - it is a waste of your precious energy. You made your comment - with absolute right to do so - it was a sentiment that you felt - and the other person didn't share. It says so much more about her than you - so forget it! You don't have to be responsible for her thoughts and feelings. Ride over it - don't react or respond. Choose what you want to do with this persons thoughts and your relationship with them - disability is not a competition - but many treat it like it is. I've just left a long blog about my recent experience, and my friend pretty much gave me a kick in to reality - but mostly reminded me that I am me and no one but me can appreciate what it feels like. I work as a diversity lead, and I am all to aware of the discrimination people with disabilities experience across the spectrum. Just because a person has a disability themselves does not stop them from discriminating against others with disabilities. I had a recent case at work where a gay man was being discriminated against by gay colleagues because he wasn't as open as they were - they hounded him and made his life a misery. Whatever your difference - you are still an individual - and free speech is still an option in the UK! Hope you can enjoy the sunshine and forget and ignore the hurtful comments. *{}*

[Eule in reply to SuzySparkle]

Thank you Suzy, you are right it is hard to ignore sometime especially as I am unable to work at (51) and the person who wrote the comment has just passed 30. Apart from that, I know for a fact that she does not have FMS but is Bipolar. As much as I'd like to ignore her completely, I can't as she is my best friends daughter.

Thanks again for your message and yes I shall enjoy the sun today xx

[Hidden in reply to Eule]

Gentle hugs Eule.

I've had Fibro for roughly 38 years - I'm 50 now- I was only diagnosed about 7 years ago. but until being hit by a car whilst riding my bike, I never really knew the pain had always been lying in wait - ready to strike me whilst I was already down. The accident was the tip of the iceberg of life time events that were piling up ready to grab me and not let go. I was in my 30's when I got hit by the car - but up until then I sailed, ignorantly and blissfully unaware as I used to have a very high pain threshold - just as this 30 year old possibly still has, but is starting to diminish. She'll soon be eating her words when the REAL stuff gets a true hold - then let's see how long she can hold down all she's able to do at present. It makes my blood boil when people like her make it to be like a competition as to who's in a worse start illness or financially. All our circumstances as to how we got ill are different - and here we have someone who's in a similar situation, passing judgment on you? Grrrrr...Ignore her and concentrate on you - otherwise you'll make yourself worse letting her comments get to you.

Love,

Carol xx

[Hidden]

if it was a case of mind over matter Id be running a marathon, that is just plain stupid, and the person who wrote it is a *********** idiot, Im 54 never been ill much raised 5 kids, worked, and lived life to the full Ive had fibro for 30yrs but the last 3 yrs its advanced, I now struggle to walk, need care from social services, people shouldnt judge others by how there fibro is, we re all different

[sue247]

Welcome Eule I am also newish to the site and have found everyone very warm and welcoming and enjoy reading the post i have even left a few LOL.. Like you I am 57 little older opps but was retired through ill health June 2011 but would love to still work but finally had to accept it was time to give up, so as people have said I agree with you the comment was very rude and unhelpful but difficult for you as she is a friends daughter.

Anyway on a lighter note welcome and i'm sure you will enjoy this site hope to speak again soon hugs sue x

[JT_3]

Hi there. I too have just joined the site. I understand how hard it is when it comes to certain people and their judgement of FM. I have been suffering chronic pain for two years now. I have been on Buprennrphine pain patches since last July and they have been steadily increased to 35mcg. They are the only thing that has seemed to help me. Even morphine doesn't touch the pain. The trouble with this horrible condition is that it isn't visible. Only you know how you feel inside. Most days I am using crutches to get around indoors, outside I have to be pushed in a wheelchair, which I hate. But on very few occasions I am able to get around the house just using furniture for support. So if people see me using the crutches or wheelchair one day and not another, they seem think that I am faking it. My advice to these people is don't judge what you have no idea about. Unfortunately through this illness I have found out who my real friends are, which are few. But the ones I have, along with my close family and husband are all I need. You will find this out too, but those who don't understand or support you, you don't need in your life anyway. If you can, get out and enjoy this beautiful weather as it really does help the mind and the body.

[Hidden in reply to JT_3]

hi I am new to the site and have only just realosed that i rellyam ill and not a mental wreck still feel embarrassed at using whellchair and needing help is iy just me or does leaning on others embarrass you too. the depressio is also hard to cope with but i am readingabook (when my eyes work) called living with fibromyadia it is very helpful. faded

[kathlaidlaw]

i agree with all above

sorry to say i think you BEST freind should have a littel talk to her

i have worked with bipola people befor and does she say the onec who can't work . then they must not have it

you freind i know will back her daughter but she should give you even just a littel suport

we are all here for you and we all have some of the same things and also some of are camplaints just ares so we are her so next time things are said just smile and say ok then come to us and rant and we will now why

we will send love and soft hugs to you on the computer

i have had same thing said by family and yes it does make you feel soooo bad

but love and suport from freinds you dont see but have love and suport for you are only a click on a key bourd away .

so don't cry on your own cry with us and if you need it we will cry with you

love and soft hugs from me to you kath

ps some people are just naste and don't have a generes heart and only think of them selfs kath xx

[soulsusie]

Hi Eule just wanted to welcome you to the site, hope you find comfort, support and lots of laughter on the way! I do believe laughter is the best medicine.

Soft Hugs

Sue x x x x

[Eule]

Thank you so much all for your very kind words and support, I so very much appreciate it. I think I might just become a very regular customer here. I've had a good look round and have already found lot's of info and seen some very funny post.

So I hope to speak to all of you again and hopefully I might just be able to lift someone else's spirits as I am a very positive person on the whole.

So lot's of love and I'm sending angel hugs to all of you XXXX

[JT_3]

Fadedblossom. Yes leaning on others embarrasses me too. I know the whole in sickness and in health is part of your wedding vows, but I thought that would be when I am in my 70s, not 30s!! My husband is my carer and has been for 2 years now. What I really really miss, and this may sound daft, is not being able to hold his hand walking down the street. Instead he is pushing me in a wheelchair. I want to be his wife again and look after him as he works really hard then comes home and looks after me. I hate this illness, the insomnia, the depression, the fibro fog, the list is endless. Some days I feel like I am 86 rather than 36. But today I have to say, was a good day. I sat out in the garden, reading the newspapers and let the sun warm me. It really was a lovely day. Unfortunately I can't sleep tho. Have taken my diazepam 4 hours ago, but they haven't kicked in yet. Could be an all nighter, which means I will be completely exhausted for the next few days. Oh the joy. I am so pleased to have found this page and realise I'm not alone. That is one of the worst things, having people around you but still feeling alone, as they try, but they don't understand this horrible illness. Anyway, enough doom and gloom from me. Hopefully it will be another lovely day tomorrow and we can all enjoy the sunshine. Good night to all you lucky ones that will be able to sleep tonight and hope everyone has a better day tomorrow. Gentle hugs. Jules

[Hidden]

looks as if youve had a warm welcome i am pleased xx yes everyone is different .. and your right its not a competion or i think everyone on this sight would quiet happily quit to be pain free .. I know i would gentle dyslexic hugs

[Hidden]

Hi Eule, and Welcome, you've come tothe right place. Whoever said that is just a plain fool and don't give them a second thought. They're not the kind of friends you need. I'd love to be back at work which I did for nearly 40 years from age 13. It would be great to have a normal life back - maybe get excited about what to wear to a work night out. My saturday nights consist of doing the washing because in winter I allow myself the luxury of having the heating on to dry it. Who would chose to live like this if it was a choice!

You stay here with us and we'll never tell you you're not ill. I think you're right too about some people not having the illness they say thy have just having some kind of personality disorder - which is an illness in itself.

Whippet x

[retiredpharm]

I am not being sarcastic or anything but I do tend to see the funny side of things.

I really don't think you want us to bare with you ( how do you load pictures on to here? ) but we will all bear with you.

We care pleased to have you on this site and it is great to be able to have a winge or a laugh and no-one is laughing at you but with you. We all vary in our symptoms and disabilities, most of us have other problems so don't feel a fraud or let other people put you down.

Good luck and keep looking at this site.

[Eule in reply to retiredpharm]

Thanks Retiredpharm, I usually see the funny side of things however there are times when I take things very much to heart.Especially when I know the sentiment behind the comment. I apologies for any spelling or grammatical errors but for future reference please keep in mind that English is not my first language. Oh and those in glass houses ...... rofl