Today I said goodbye to a friend I used to consider my best friend. No they didn't die. They think I have given up on life. We were friends for at least 10 years. I almost married her but we realized that we were better friends than a couple. For years we hung out together and it seemed like we were always there for each other. But then she got a job paying very well and a few years later I got laid off. I started to hear from her less and less. Then I got sick but she could not except it or did not believe I was really sick. She kept telling me it's in my mind or many people still work with Fibro according to her nurse friend.
Over the past year I would only get text messages maybe once a month. Today I got one. Instead of asking me how I was doing, she asked if I was still in my house knowing that I have no income. Well the text went back and forth till finally she tried to tell me that my body aches are because I'm in bed too much. She know this because she felt the same way when she was sick in bed for a long while. Then she said my fatigue is because I don't go to sleep at the same time every night. I just need to get on a steady schedule. Then she proceeded to tell me I have just given up. Not once since I got sick did she ever ask what she could do for me. She was always judging me tying to tell me I'm lazy or some reason excepting that I really am sick. So today I had enough. I just said if you don't have anything good to say to me, then don't bother contacting me again.
I was there for her when she needed a place to stay, was by her side when she was in ICU and her family barely cared. I was even there to listen every time she broke up with some guy. But now that I just need a friend I get her crap that I have given up on life. God only knows that I would love to be able to work even part time.
Why is it that Fibro causes us to lose friends and have family become distance? Is it because we have no scars or outside physical evidence for them to see?
So another day goes by and I have one less friend. I don't know why I feel so sad. It's not like she really cared. No phone calls, no offering me any help. Only judging me. Maybe that's the only way she knows how to express herself. Nevertheless, I had to let her go.
Oh I'm so sorry to read this, to be honest you don't need negative people around you, we are all very aware of any failings we have and can do without unhelpful comments, on the subject of working with Fibro yes many do and often to the detriment of their health, there is no shame in stopping employment when ill. I worked for many years with this and quite suddenly I could no longer go on. We all learn to cope as best we can, steer well clear of negativity. Some days it really is only this forum that keeps me ticking over and I am fortunate to have good support from family, only we really understand this illness. So keep looking in for advice and, most days, lots of laughs. Lou xx
Thanks for your reply. It's just hard when you finally make the decision to let go. You're right, I don't need her negativity. I just thought after all we have been through she would be more compassionate and understanding. But today was all I could take. As always one day at a time.
gosh with friends like that u don't need enemies. although I do think unless your going through it u cant possibly understand how we feel. like you said its not like its a visual problem and some people only understand what they can see. if pain was visual they would probably have more sympathy and understanding. but I am sorry uve lost a friend I cant say I see mine very often as I cant go out and do the things they do so they stop asking. the group are always here for you though
I'm the same way. I can't go out and do things, so my family has stopped asking me over except for holidays. I can make the hour drive to my brother's house, but I get tired after a couple hours. Then I have to worry about falling asleep on the hour drive back home. So now I just don't chance it and stay home.
This is the only place I feel I can express myself and be heard and understood. That's all I really want, to be heard and understood. The last thing I need is a lecture saying I'm not really sick. Or I can work if I really want to. Oh well. I will say that this condition is teaching me a lot about people. A kind word can go a long way. All my brother can say is, "I wish I know what to tell you." Come to think of it, I don't even get, "hope you feel better", or "hope you have a good day tomorrow." I wonder if people are incapable of understanding, or they just don't want to understand.
i find because i dont go any where or do anything i dont have anything to talk about any way. i wish people would stop asking how are u today because im fed up of saying in pain and u can tell their fed up of hearing it, so dont ask then lol.dont they know that given half a chance we would rather be working than sitting here all day in agony. my mums the worse she says u shouldnt do so much u need rest then when i am resting shes says u shouldnt be laying round cant win, im only laying around when i cant phyically do any more. they dont have a clue what we go through every day. on the other hand their are a lot of people worste off than us. rant over lol xxx
I understand. I finally had to tell my brother not to call as much. Like you I don't go out so I have nothing to say. I find myself talking about my aches and pains because that is the only thing that is going on in my life. I finally realized that no one wants to call someone and hear the same complaining every time they call. I'm glad when he calls, but like everyone else, they don't know what to say. So he listens, then there is silence, the he says, "I wish I know what to tell you. And that is the end of the conversation.
I do try to think that other people are worse off than me. But that does not change the fact that I'm in pain and need pain med just to get through the day. Or that I need at least 8 to 10 hours of sleep, and then need to rest if I just go someplace like to the grocery store.
Such is life...
I'm so sorry that this has happened to you. You were there for your friend plenty of times but unfortunately she's never really been there for you.
Some people are like that in life, they just take and take but never give.
I know that you are probally feeling a bit low but I don't think she was ever a friend.
It seems once you had very little income and became unwell, she was off.
Your so better off without people like that. I know that doesn't take the pain away but we are all here for you to chat to.
We understand as most of our fibro family have gone through the same at one time or another.
sounds like the friend you just lost wasn't much of a friend any way you can do without her negative comments as it only makes you feel worse some eople just don't understand fibro and others just don't care any way atlest you have your fibro friends on here to talk to best whishes.
I think she was a fair weather friend. It was ok whilst you were the strong one who she could lean on, and she can't handle a role reversal. I imagine you feel a bit conflicted at the moment. She wasn't being the friend you need so you've let her go, and yet you grieve the loss. It is sometimes hard to understand why we feel sad for doing something, we've reasoned, is good for us. But its natural, you had a lot of history together and now there is a vacuum.
I recently realised that people I'd been friends with for decades are actually just sentimental friendships. That persist because you once had something in common. However, they are not really in my life now, or in tune with who I am now. So I let them go, and the vacuum was scary. That is until you realise it also sets you free, to be who you are now. Free to find people you resonate with now as you grow and develop. And even if socialising is difficult, you start with lovinge yourself. And as Whitney said its the greatest love of all.
Well easy to say but at least they are honest with you and you are better off without such a vampire. You do need to create space in your life to let new people in but life is hard and it is not fair.
Gentle hug
So sorry you've lost a long term friend. But I think she is the one loosing out the most.
I have no mates any more ,iv had ME for 15/16 yrs an FIBRO for 4/5 yrs,even my family doubted me ,until Professors Finley,who was the first Doctor to Find the ME syndrome ,at Harold wood Hospital in Essex. Because I don't look iLL ,people think I'm lieing, but when they see my DRUGS they change there minds,I can't be bothered any more ,iv been iLL in bed for the last 2yrs ,they found out that iv had a Kidney infection all that time ,an its affected my ME ,an Fibro to the extent that I can't even wash my self or cook anymore ,if it wasn't for my boyfriend ,I'd be dead ,he dose all the cooking ,an washing me ,.catheterised me as well ,the shopping. Iv been out of my home only 15 times,that was for the Hospital an rushed in with bad Angina attacks.
All my friends disowned me ,because im iLL .WERE IS THE COMPASSION GONE in this WORLD.,I also got run over by a car ,giving CPR to a man 10yrs ago ,I lost my 3 company's ,My Home ,an my husband, all because I helped someone ,I didn't get any compensation ,due to the police solicitor could handle speak English ,an I'd had a mini stroke the day before, I couldn't remember anything.
My friends didn't want to know,
Take care everyone ,I hope you will all feel better soon.Good Bye
Wow, you have had a rough time. Your boyfriend must be an amazing person. I too wonder where has the compassion gone in people. I can understand it from friends but I expect more from family. Thanks for your reply and I wish you all the best. Being sick has taught me a lot about people. Doing nothing for a friend or family member can hurt just as much as them hitting you in the gut with their fist.
Yes I know the feeling I am not as bad as you but cos we don't look ill they say you look good yes on the outside not on the inside I had lots of friends but where are they when you need them I just tell them now never phone up to see how you are or nothing and when I was in hospital no friends it's a good job I've got kids but some time think they sick of hearing me say I am in pain all time think they think I am putting it on I am not I never been ill in my life till I had my stroke and got APS big hug to you xx
oh I'm so sorry. it must be very hard for you. it doesn't sound like she was the girl for you, maybe your better to move on and hopefully miss right will come along. however maybe she doesn't cope to well with illness or she maybe like many people who just don't understand how bad fibromyalgia can be.
That is very sad, about your friend and her distancing once you seemed to need her more than she needed you. It is difficult for the best of people to give to others at the best of times, for most of us it is hard enough just taking care of our own needs and thinking about the needs of others can be just too much for some people, they simply don't have enough to give. It may be that your friend has little to give, that following her accident she is just managing to manage her own life. It does sound as if she is still quite angry and I wonder whether that is because she feels that if she had to manage then other people should too...
Whatever her reasons for not supporting you when you needed her, she has made it clear that she is insensitive to your needs and as such I agree with everything others have written. The one thing I would add is that you don't say whether you are able to get out and about sufficiently to continue to live a life. It is very difficult to live life fully with fibro but it is important to find a way to do so as without enjoyable activities and social contact we all become more susceptible to pain which doesn't help our emotional life and that pattern becomes cyclical. I wonder whether the meds you are on are mainly for pain or whether they include an antidepressant component - I am asking because if you can be helped to feel more positively you may find your pain levels lift and that you are able to do more. Some of the newer anti-depressants are very useful for easing fibro symptoms - far better than pain management meds - and it is worth seeing a rheumatology specialist and discussing your level of pain and how it interferes with your ability to carry on living your life.
I understand how you feel as people do not understand about Fibro as they think it's just a few aches and pains not a constant pain and drag on ones physical and emotional health etc. I lost a lot of friends as I became less able to do things and no one around to offer help when needed. I learnt to cope on my own. I have a loving husband who himself has Fibro along with Arthritis. We try to support each other and we do succeed in many ways but we notice that friends and family are not so keen on being helpful. One or two have said 'Don't overdo it now' as we have got older but no one offers practical help when they see us struggling.
We have learnt to cope on our own even though at times it has been difficult and we have felt like crying when we really have difficult days. We are lucky as we have a faith that keeps us going. A lot of people fear 'invisible' illness and Fibro is 'invisible' as can be arthritis and osteoporosis and migraine and Coeliac disease that I also suffer from. A relative of mine just said to me once 'I just take a couple of paracetamol when I've got a headache'. 'Charming' I thought but it was obvious they didn't understand. So I just left it and thought one day they may need a hand and yes it has come to that. Now they think that my husband and I are wonderful when we have helped them through difficult times. We are not wonderful but have fellow feeling towards others that suffer as we know what it's like to feel like death warmed up and left over to use a phrase! We feel for others that suffer and if we can help we try but at the moment we are getting ready to move house so all our resources are tied up in that and I mean health wise as stressful situations like moving does aggravate Fibro. We feel for you as well as it can be a lonely world when one has an 'invisible' illness and people don't understand. One doesn't need negative minded people around and the best way is to tell them that Fibro is not just aches and pains but can cause a lot of other symptoms and if those people can't be bothered to understand then we have to let them go. It's harder when one is on one's own too and would love to join in with activities or even just going out for a walk or visit a friend and can't as the fibro and related symptoms are playing up. This forum is a good place to share your feelings as we all understand. If there is a local Support group for Fibro perhaps, if I might make a suggestion, it might be a help to join it to make friends that understand and you can share with Mark. This is only a suggestion as you have to listen to your own body as to what you can cope with. Don't let negative friends get you down as they just don't or don't want to understand as they could be scared it might happen to them. I'm lucky in the fact I use to be a counselor and worked with others with health issues including what I have but it doesn't always make it easier to cope at times believe me! I get days I just want to sit and howl my eyes out but then my hubby and I try to 'joke' our way through these periods as he gets it too and say things 'Come on Love we are British and we don't stand for this nonsense so stiff upper lip and all that. ' OK we try to make each other laugh or at least smile as Fibro is an enemy and we want to show it that we won't be beaten or we won't beupset with friends that desert us. Yes, even members of our own church have now disappeared despite the fact we always made them welcome in our home and helped them when they were in trouble. So we understand how it must feel for others and you too. Share your feelings with those that understand as it does help. Lots of love and hugs to you Mark and we shall remember you and others in our prayers.
Thank you for your advice and support. It does help to hear that others understand. It's too bad that even the people at your church seemed to distance themselves frome you. I am hurt but over the past few years we barly communicate. When we do she acts like she knows how I feel and says I just being lazy. I know this is long but this was her post to me that put an end to my relationship with her.
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I'm not getting info from anyone! You have chronic fatigue because you lay around and do absolutely nothing and you have done this for years that's why you have absolutely no energy!
Through my illness this last year I did the same thing and developed this chronic fatigue that you say you have. If you do nothing you will become achy and tired continually. So please don't tell me I don't know what I'm talking about, because I do!!!!
Your sleep routine is messed up because you have not worked in years.
You cannot have a regular sleep schedule if you go to bed different hours of the night. If you were to get your life back you would have to train yourself to go to bed at a regular time, just like anyone else that has a messed up cycle.
If your hands hurt buy one of those gloves. My foot hurts everyday but I still go to work regardless of the pain.
If you want to go to work then do it! The problem is you have convinced yourself that you can't and guess what you never will. Not because you can't but because you've convinced yourself you cant. The mind is very powerful.
There are hundreds of thousands of people out there with, cancer, that are in excruciating pain that still work everyday and live a full life.
She is so wrong and it saddens me to read what she said. She has no understanding of the condition. I think we all know that sometimes fibro can be made worse with no exercise but it's an individual thing with people I get stiff and sore if I sit around too much but that is for me and I don't judge others on that score and nor should she. Maybe she needs to research what fibro can do and realise that it can cause depression which can sometimes make us more lethargic especially when we don't have supportive friends to help us. She needs to be supportive not condemning you or insulting as I would be most insulted if someone said that to me. You cannot equate Cancer with Fibro so it shows that she has no idea of the suffering both physically and mentally that fibromites go through. She needed to gently encourage you to do as much as you could on good days and I mean gently not with a sledge hammer! It saddened me to read that Mark. I've worked with people in pain and it's individual as not everyone perceives pain the same way. Some can push through it and some find it more difficult and it's not down to us to judge on that score. I can tolerate a load of pain but my hubby knows when I'm in the nasty pain and I know when he's in nasty pain. I know its sad that this has happened and maybe one day she might think of what she said and apologizes to you. But Mark you need to find support so speak to your doctor and see if he can help. It is a known fact that most women can tolerate more pain than men. I do say most women but some men can as well. As I said it's an individual thing. I'm sorry your friend has been like this but rest assured there are loads of people out there that would and do understand so that is the people you need to be friends with. We do understand so remember you are not alone in this and can let of steam on this forum. Gentle Hugs XX
It's too bad that our Fibro doesn't show bright red where we are in such pain, isn't it?
Perhaps then those who deny us the right to give in to extreme pain, to not sleep at night without interruption, to be fatigued, to be unable to go and do w/o ceasing ... would NOT DO SO! Your "friend" behaved in a selfish ~ and very heartless ~ way. And in my mind, you are much better off without her and her views of how your life could be so different "if you WOULD JUST DO such and so." Seems she wanted only to take/receive, and not give in return ...
We all know from experience that you'd be more active ~ you'd be working ~ if you could. No one seeks to be where you have now found yourself. Please know that you have new friends and support on this forum, Mark, and find solace here.
Better days are ahead ... sending caring concern your way! bk
(Don't forget to make those church calls/inquiries tomorrow!)
Sorry u have had such a negative friend in your life. ..One good thing is that you say u nearly married her...least there is no divorce for you to handle, the emotional stress that would cause would be a nightmare to you. Fibromyalgia takes all our strength and we should not need to have to cope with ignorant people who a. Won't listen to us, b. Refuse to accept we are ill lastly c. Cannot be bothered to look at the information available on fibromyalgia and how to help someone with it.
We can only try to educate them when we have the energy.
People who suffer are truly remarkable having to pay the price for this terrible illness least we can rant on here. ...and if someone keeps testing us just tell them we all know and understand so just accept we can't all be the jester at their party anymore.
I agree with all that's been said already, she isn't a friend worth having if she has no compassion or empathy. I too have lost many friends after I became ill in 2005,it showed me who truly cared for me and who just used me for what they could get, it was upsetting at first but now I have toughened up and no longer have contact with any of them.
I have had Fibro for most of my life if not all my life. Friends have been very hard to make for me. A lot of people seem to think if your sick your not worth their time. So I can honestly say the friends I have (very few) try to understand. I have known a lot of people who are fair weather friends so to speak. They are there when they need you but don't need them because they don't have the time. She seems like a fair weather friend. I just want to let you know that I have found the people on this site to be uplifting. I think if I lived closer to many of them we could have a blast! I really wish I could meet them in person! Mark you seem to be a very nice person. I truly believe that you are a capable strong person. My thoughts are with you. Now replace the bad with the good.
Thank you all for your comments and support. It seems it is a common theme to lose friends when you have a chronic illness. It's a good thing I'm not suicidal. If I were, the last thing I would need to hear is someone telling me that I have given up on life as she did. That could be just enough to push someone over the edge.
I have been in bed for the past 24 hours since I told her not to contact me again. I have been exhausted. Telling her goodbye was not devastating, but it did hurt. I guess that stress or feeling of loss triggered something that made me feel physically bad and just want to sleep more than usual.
I know that Fibro effects everyone a little different. Those of you that can still work, I applaud you. My fatigue prevents me from going out for more than 3 hours. And my sleeping routine fluctuates so much, I can not promise any employer that I could be at work at a specific time. People just have no idea how we feel.
I saw a pic with a woman laying on the floor that said, "Doctors say that, to understand the fatigue of Fibromyalgia, a "Normal Person" would have to stay awake for three straight days and then try to function. We don't want pity; just understanding."
It's so sad and I can relate to this as I no longer get invited out to a day in town or anywhere with a family member because "I can't walk very far" It hurts but you just have to get on with it don't you
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do you have enough spoons A perfect explanation of fibromyalgia sourced from an article on the ( fibrimite web-sight )
A reality shock :-(
Such a tragic story :(
Hello and goodbye.
