A family member Once pulled my fingers apart and said its just an age thing. Not only did it hurt like hell but I cried real tears when I got home. She actually said a good spinning class would do me the world of good which is a gym class where you peddle really fast on a bike that doesn't move, you stand up on the bike and peddle and then sit down and peddle faster and faster!! I can't even stand up quickly let alone try and move onto a bike let alone peddle one!! We have not really seen much of each other recently because I think she is embarrassed to be seen with me. I use a tri walker or stick and obviously gained weight. She is a size 6 so I look huge next to her. Whatever I eat I'm told that won't help my condition
I GIVE up.
From LucyW who is already at 08:20 this morning in a huge amount of pain and have work in the morning. Oh and she told me not to worry cos fibromyalgia is a virus and it will burn itself out eventually!!
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Lucyw
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Hi Lucy
Sadly there are many people who just don't have a clue. And unfortunately many of us are related to one or more of them! You can't change the fact that you're related, but you can choose how much time you spend with them, and how much notice you take of their ignorance!
As hard as it is, you have to learn not to let other people's lack of knowledge and empathy add more stress to your situation. I hope for her sake she never gets ill.
In the meantime, have as good a day as you can, and rest up for tomorrow.
sending you ((((hugs))))
Kaz
We do and with over 6,000 people registered on this site who pop in and out that's an awful lot of mad people ......or its an awful lot of people who suffer like you do ..... And that's just this site .... So you are not alone and my answer to your family member would be .... Seeing as we are related you should be thanking me, I,m the one In the family not you who got this... Cos it could so easily be the other way round
You poor thing. Good on you for blogging rather than keeping it all inside! Healthy people sometimes don't understand and will make silly comments or assumptions. They can't understand - that's their frame of reference.
We are in pain. We battle to move, walk and exercise (to name just a few!)
If we were pain free- would we be on a spinning bike at gym? Be slim and trim? Run and jump? Yes we would, but we can't right now- THAT IS OK!
Working while in pain isn't easy- but unfortunately worry and upset does make it worse. So be kind to yourself. Don't beat yourself up because of things others have said. (My fibro has even been described as "LAZY BONES DISEASE" by a good friend.)
Do a bit of a relaxation exercise before popping off to work today. Make sure you take your meds, and be sure to take breaks as often as you can today.
ohh so sorry Lucyw, thinking about you and yes ive been through it too i printed a letter somebody wrote about FM and for the life of me cannot remember where i got it from and gave it out to so called friends/relatives it made them say i didnt realise at least they shut up, soft hugs xxx
I can't even get enough energy to get out of bed, but will use my last bit of energy and have a hot bath, medication and then see how it goes. My GP and hubby keep saying how good itnismfor me to keep working, but id love to see them trying to sit in a chair for 7-8 hours a day on a pc concentrating on a brand new job. Nothing is sinking in and I'm known as the lady with the stick. They already hate me because I have a 'special' chair and they all have to hot desk except me! So I'm not popular at work. Very difficult but my brain is fine so is my hearing!! Thank you all for bothering to answer. Have a pain free day and if the sun comes out properly I might try and catch some on my legs....
Hi Lucyw, Here is a letter that I use agaain and again when faced with ignorant people be them famiy, friends:
Open letter to those I love and care for : -
Please understand that being sick does not mean I am not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably do not seem like much fun to be with, but I am still me stuck inside this body. I still worry about school, work for my family, friends and myself, and most of the time I would still like to hear you talk about your worries too. Please understand the difference between « happy » and « heathy ». When you have got the flu you probably feel miserable with it, but I have been sick for years. I can not be miserable all the time, in fact I work hard at not being miserable. So if you are talking to me and I sound happy, it means I am happy. That is all. It does not mean that I am not in a lot of pain, or extremely tired, or that I am getting better, or any of those things. Please do not say, « Oh, you are sounding better !. I am not sounding better, I am sounding happy. If you want to comment on that you are welcome. Please understand that being able to stand up for ten minutes, does ot necessarily mean that I can stand up for twenty minutes, or an hour. And just because I managed to stand up for thirty minutes yesteday does not mean that I can do the same today. With a lot of diseases you are either paralyzed or you can not move. With this one it gets more confusing. Please repeat the above paragragh substituting : « sitting », « walking », « thinking », »being sociable » and so on … it applies to everything. That is what Fibromyalgie does to you.
Please understand that Fibromyalgie is variable. One day I may be able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please do not attack me when I am ill by saying, « But you did do it before ! « , if you want me to do something then ask me if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that « getting out and doing things » does not always make me feel better and can sometimes make me seriously worse. Telling me that I need a treadmill, or that I just need to loose weight, get this exercise machine, do some gym, try these classes… may frustrate me to tears, and is not correct… when I am capable of doing these things, you know that I will ?! I am working with my doctor and kiné and I am already doing the exercise and diet that I am supposed to do. Another statement that hurts is « You just need to push yourself more, exercise harder. » Obviously Fibromyalgie deals directly with muscles, and the nervous system, and because my muscles do not repair themselves the way yours do, this does far more dammage than good and could result in recovery time in days, weeks or months from a single activity.
Also Fibromyalgie can cause secondary depression (would you not get depressed if you were hurting and exhausted for years on end !? it is not created by depression.
Please understand that if I say that I have to sit down/liedown/ take these pills now, that I have to do it right now – it can not be put off or forgotten just because I a mat work or out for the day (or whatever). Fibromyalgie does not forgive. If you want to suggest a cure to me, do not. It is not because I do not appreciate the thought an dit is not because I do not want to get well.
It is because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If ther was something that cured, or even helped all people with Fibromyalgie then I would know about it. If after reading that, you still wish to suggest a cure, then do it, but do not expect me to rush out and try it. I’ll take a note of it and mention it to my doctor at my next visit.
In many ways I depend on you. I need you to keep in touch with me when I am to sick to live normally, to help with some shopping, cooking, cleaning. I may need you to take me to the doctor or to the kine. I need you on a different level too… you may be my link to everything. I need you to understand me.
Thank you for the above letter, I will print it out and give it to my family tho I know they won't read it, they are just not interested, I gave them all a leaflet to flick through but know it meant nothing. I have been diagnosed with FM/CFS for 16 years, I was elated when I got the diagnosis felt like screaming to everyone I am not going mad and imagining all this I now know what it is. Well when I to consultant and he explained there was no cure, I fell to earth with a bang. Without going into loads of details I have since had frightening health issues worst being macular degeneration in both eyes, they took driving license away 5 years ago, now lost independence have to rely on family/friends who cannot even imagine not being able to just nip out in the car, and sometimes we need that I will do it feeling that lifts our spirits, I then had breast cancer, new knee the list goes on. My OH is my carer but still complains that it takes me longer than most to build myself up to go out, the fact is I have lost my confidence and self esteem, I don't want to go to local shopping centres in a wheelchair in case I meet someone who remembers me as a fun loving business woman, I had to give up shop due to health. People especially OH (been married 45 years) children and grandchildren, relationships can never be the same.
There I have got that out of my system.
Hugs and happy thoughts to you all xx
So many people out there are so ignorant and just blind to our pain and the stress we go through, its as if we need to prove ourselves , i have the same problem with my daughter but i have decided to just stop trying to involve my family in my care package. I feel for you for its important to feel you have support . I only joined this sight yesterday and i am so impressed with it, i think that the best support we can get apart from our partners( even then our partners don't really understand) is to join a site where people understand and know what we are going through, its too upsetting to try to involve others who clearly have no idea of our condition. The person who told you to join a spinning class has her head in the sand and to pull on your finger wow!!!!! i can only imagine the pain this caused. Try to stay positive in yourself ( difficult i know ) and talk to people who understand , leave out negatives in your life, we shouldn't have to justify our illness to anyone.
I do hope your feeling better soon, it would be whole different story at work if they were in your shoes I really do hope you feel better for tomorrow. I have the same problem with my father and older brther but not my younger as he was my mothers carer fo 20 years and had his own set of problems he has fibro plus a curved spine due to An exptra vertebrae,its nice to know someone with first hand knollege but still wish he didn't as he's been suffering since birth. Enjoy your bath hope you sleep well. Gentle hugs. Sithy
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