What's been the hardest things to come to terms with? with regards to you illness?

*people's lack of understanding.

*Paying for every activity I do like cleaning etc. With pain and stiffness when I stop at a young age. Have had Fibromyalgia since I was 16 and am 29 now.

*loss of autonomy.

*The stigma that comes with this illness.

*Pain, brain fog, fatigue, in that order

*Having spent 50+ years of my life running a diary and sticking to it (save for the occasional bout of the "bug of the day" or a sick child) but now having to be far less reliable. I hate having to say "I'm sorry but I can't do this today," not my style at all.

*The never ending fatigue. Causes me to feel so guilty.

*Not knowing how your going to be from one day to the next, also peoples lack of understanding!

*I still haven't come to terms with it so I guess that's the hardest thing!

*Having to persuade everyone your ill, especially Government Departments!

*People not believing there anything wrong with you?

I used to power walk 3 mi per day. Now I can barely walk down the block. Weight gain!

*Probably the fact that I am not able to do the things that I used to do because of the pain and the fatigue.

*Um, EVERYTHING! I was so active, dance instructor, karate instructor, skier, gone, all gone.

*Oh and having to give up going out dancing, sigh.

*The big life adjustment that it causes. I thought about this the other day it is in some kind of way like losing oneself and having to start out with the same name etc. But a big change in life's direction and how you do things.
I after having had Fibro for five years have only just finally accepted things.

*Knowing there is no cure, not knowing if it will EVER go, and my kids losing there mum.

*Feeling useless with nothing much to offer and qualifying as an interpreter for the deaf community and my arms then becoming too painful to even sign, trained for many years.

*The fatigue and people that just do not understand.

*That I cannot be who I once was; that I cannot make plans in advance any more it seems.

*Having to think about what you need to do versus what you WANT to do, I'd love to keep a perfect house, play all day with the kids, cook from scratch every night, walk the dog, go to the gym. Heck I'd even settle for managing a weekly supermarket shop without having to plan the entire week around it. Makes me feel utterly useless.

*Not being able to go for long walks, having to give up work and doing sports.

*Not being as independent any more.

*Feeling useless and not being able to be the active mum I want to be.

*Not been able to walk my son to school any more!

*Feeling guilty about not being able to do what I used to do, so now my partner and daughter help me out a lot!

*Mine has been getting my family to understand that Fibromyalgia is a real disease and getting my husband to understand that I need more sleep than people without Fibromyalgia.

*Feeling like hell but not looking it, makes ya feel like a fraud.

*Not being reliable. Never booking an event because it will probably be a waste of money. Which I don't have because I'm on benefits.

*The fibro fog has been the hardest. I used to be such a great speller and had the best memory. Now I am lucky if I remember to pay bills on time. It makes me feel so dumb.

*Lack of understanding, missing out on so much. I was eventually diagnosed at 19 (26 now) so never had a chance to go out with friends etc because I just wasn't up to it. Giving up things I loved (I was a riding instructor), and the pain - omg the pain.
I guess I haven't really come to terms with it still after 7yrs, I kinda just get by I think. groups like this help as you tend not to feel so alone.

*The unbelievable grief from losing so much of myself to this illness.

*That there us no cure, and that I cant do anything like I used to be able to.

*Not being able to do my garden that I have worked very hard on for four years. It is a very sloping and I just can not make it any more. It used to be my sanctuary.

*Not being able to play with my son like a mummy should. Or letting him sit in my lap when I get home from work. I've been in tears about that before.

*losing control of things, just feeling so unwell all the time. Of course the lack of support from others as they don't realise that Fibromyalgia affects the whole body and mind.

*That I can't work, that my dreams and aspirations are over.I am almost 50, and have had Fibro for 10 years. I worked 5 of those, and ended up in the hospital so many times I had to resign.
It is hard having an illness where you look good, people think you are lazy, etc because you don't have a "legitimateI disease, it created a stress in my marriage.
I would do almost anything to get my life back.

*loosing my independence, not being able to work and being in constant pain its hard sometimes feel life is not worth while.

*The Frustration of Everything. and how Life changing it is.

*I was described as a "ball of fire" for 15 of the 18 years I've had FMS. When my thyroid blew and I had peri-menopause at the same time, my health went down the toilet. Now the "ball of fire" is unable to work at all. I left a $200,000 a year job as COO. It's not the pay check that I miss--it's the feeling that I'm unable to do anything.
I used to work 80-hour weeks, and now I can hardly do laundry. Sucks!

*Feeling pain all the time and guilt for not been able to work and struggling all the time, trying to put a brave face on.

*I can't come to terms with it yet. I still want my life back.

*Having to change my life to fit around the illness, or should I say the illness now fits around me but, not being able to do the things I used to do, like not being able to clean, go for a nice long walk, go for a night out dancing.
Play fighting with my boys, & lots of other things without being in alot of pain & feeling sleepy.
I feel like I've given up so much for this illness. Because NO MATTER how much I miss the old life I know I will never get it back.

*Loss of my independence and job, plus the fact that DWP says my condition will improve. There has been no improvement in two years!

*People's lack of understanding. The fatigue. Not been able to do many a thing I once enjoyed.

*The way the Government treat people with any form of disability - with complete lack of understanding and as though we're a bunch of work-shy, benefit scroungers.

*Being sick all the time, having to cancel planned events because your in too much pain or have an illness due to your low immune system.

*Finding and keeping friendships! I'm 23 years old, and have hardly any friends. I have no family here so I'm trying really hard to make friends. But they always want to go out and party, when I would rather stay home and sleep.
Finding a guy to have a relationship with is just impossible. I've given up on all hope of any of my dreams coming true. Falling in love, having a family, it's just too hard to find anyone that understands.

*This is amazing! read all of these from the beginning, we are ALL saying the same thing, yet, no one believes us, we have lost "ourselves", lost the ability to do fun things, it has affected our family.
This is truly, absolutely the saddest thing for me, at least we know we are not alone. It doesn't "cure" us, but I guess we have to become more vocal about this. Gentle hugs to all of you.

*Mental capacity reduction is the worst for me due to Fibro Fog.
I found a low carb diet helped a lot with weight issues - like Atkins, Celebrity Slim or Cambridge.

*Some people not understanding, saying how well you look, when you feel so bad inside...not being able to do the little things without so much pain, sometimes feeling as if your on your own, tired and run down etc. Gentle hugs to everyone.

*My social life going out the window, friends disappearing, pain, brain fog. Fatigue. But most of all not being able to do sports and things with my children.

*Feeling like a complete and total failure. I keep the accounts for mine and my husband's business Or, I should say, Kept.
Here it is the day before taxes are due, and I'm still doing books in 2008. Starting to get scared. Everything seems to be a huge chore now.
I sometimes feel that I've given up all my dreams to this damnable syndrome. I know that it's not myself that's failing; but I also know that some people think that I've turned into somewhat of a flake.
Hurts. Used to be on the top of my game, now I can't seem to even remember the rules.

*Brain Fog is my worst enemy. I am just having my first "diagnosed" flare up and by far the worst thing I have ever experienced. I am 36, a single mother to 3 kids, ages, 16, 11, and 8.
I am also a new teacher and the brain fog is getting worse and really affecting my teaching and other responsibilities at school. Including relationships with peers. Because no one even knows what it is if I mention it.


*Wish people at work would believe me that I got Fibromyalgia, and when I say I'm having a bad day, and in so much pain not look at me like I'm a alien.

*Does any one else who has Fibro, have trouble with losing weight, as I cant lose any, I do my best eating the rite foods but no luck.

*The effect on family life.

*Not being able to even attempt to fulfil my career dream, and not being able to climb mountains any more.

*That I can't make plans and always be able to stick with them, and most people just don't understand.

*All of it has been hard but I suppose the worst things are people not believing or understanding that I have this condition. The uncertainty of how my life is going to be and if I feel this bad at 38 how on earth will I feel in say 10 years time?
I'm not me any more as each day is a battle so I suppose I'm also struggling with the grief of losing my old self if that makes sense.

*In a word FIBRO, I cant come to terms with it, cant let myself be ill and even though I know I cant fight it, I keep trying.

*These comments are so important for me to read, especially as a non sufferer; makes it so much easier to focus on my training, and know that I am indeed raising the profile of F suffers in so many ways-as I keep saying to people who ask why are we doing the North Pole race - I reply "we are ordinary people doing something extraordinary to enrich the lives of those who suffer daily" my training pain is so insignificant and very short term .((hugs)) to all

*The fact that I can no longer enjoy a night of dancing, without being exhausted after just one song, or taking my Dog for long walks!

*Having to grieve the life we had.

*Loads of things, such as independence, not being able to go for long walks. Kids losing their mum. I could go on.

*Thank you for what you wrote on here and for what you are doing for me.

*Having to make excuses all the time for how I feel to others!

*Just not being able to do the normal daily things without pain and it making me tired, not being able to do all the normal student things, or any studenty things, feeling 80 and I'm only 20 and then feeling guilty because at least I'm alive and others are a lot worse.

*The cold hard fact that all the stuff I wanted to do with my husband is going to a very huge struggle.Everything hurts.Packing,camping,bike rides. I am pretty confined to home.
He's OK with that,but I'm so scared he's going to resent me or leave me for it one day. He is truly loving and I don't think he will,but it is a real fear to me.

*Not being alert enough to drive my car!

*Having a family that doesn't understand Fibromyalgia. Tired of being tired, tired of not feeling well.

*Knowing that I could wake up tomorrow in a full blown flare up..knowing that my husband doesn't understand why I can't get up and clean the whole entire house in one day like I use to, because the next day I will be completely wiped out.

*First it's the "term, disability." Second, it's having to ask for help. I think mostly, its having to miss so much of LIFE!

*My inability to play football. I really miss it.

*Very poor mobility, life changes and adjustments, other peoples expectations and lack of interest/support.

*Not being able to work and being broke and not having a NORMAL LIFE.

*For me, I think it is that I no longer look forward to sleep because of the intense pain & stiffness when I awake.

*That I am no longer able to do many of the things I used to do.

*Also having a friend that just doesn't understand that I can't go here or there with her. And that I never feel well enough to come over and talk or go anywhere together. Just the drive to her house is painful. But she doesn't understand that, cause she won't read the info that would help her understand FM. She won't take time out to understand why I feel so bad and hurt so bad daily.

*The PAIN what else? AND NO DR. I have seen in 9 years. Over 14 drs, and none of them helped me at all. $1000's and $1000's of dollars spent to them, to line their pockets. I got nothing from them but medication that did nothing.

*The fact that I will be like this the rest of my life - constant fatigue, pain, migraines, hundreds of pills etc. The Dr's are "just trying to make me more comfortable"

*Constant pain,some doctor's ridicule, not being able to work, not being able to do with Dakota all the things I was able to do with my older two, vision & balance problems, But the one thing I think that hurts the most when my four year old hugs me and I can't help but whence in pain. He is four he doesn't understand why his hugs sometimes hurt me!

*Oh the FOG!

*That my life isn't going to be anything like I'd hoped - job, husband, kids, social life. These are all unlikely to happen, so I'll have to make a new plan.

*Yes, that's about right everyone - but here goes, so much incoherence that my IQ of 132 now seems like 82, which affects not only home and social life but work, that now I just settle for a getting-by job, knowing that I can't perform in a high-paced, high-pressure executive forum like I used to.
Not being able to be active enough for my kids (I'm trying to change that since I've given up demanding work) - feeling in pain and exhausted after a normal day of activity instead of feeling satisfied and happy - just overwhelmed since I can't keep up - then I get angry.

*Tired of being tired, loss of memory, and not being able to come to terms with the way other people treat me with this awful disease, they just don't seem or want to understand it, looking well but feeling in so much pain.

*That I didn't get to live my life out the way I wanted to; I feel that I was cheated in some way. I wasn't anywhere ready to stop working. I tried the best that I could not to stop, but the fibro got me down.
Of course all the symptoms and not being able to be touched or sometimes believed all the usual stuff, pain.

*Feeling tired all the time, memory loss, feeling less than half of who I used to be before this, lack of understanding from others that I can look okay but be hurting so bad.
Being unsure of the future & how many more attaching illnesses I will endure by then? Knowing there is no cure, just pills & going to bed & coping best you can & hoping for better tomorrows & keeping a positive outlook when you feel defeated & beaten most days, sick & tired of FEELING sick & tired!

*Feeling like I'm loosing my self. 12 years ago I was backpacking round the world, now I'm lucky to get myself to the shop and back.
I took care of people now people feel they have to take care of me. I used to run and play with my daughter now it hurts if she hugs me too hard or sits on my knee.
I miss being able to live without the pain, I miss not being scared of what may come next.
I was told its not a progressive illness, not quite sure who made that one up cause its not true.

*My thoughts have already been answered in the posts that are listed here.

*I am sick of people saying how well I look! The constant pain and tiredness, I miss dancing, used to go three times a week.
Also that DWP think you faking and when you get better they find you a job!
Makes me so mad have to fight for everything! Haven't much fight left, but I am lucky have fab friends and fab husband.

*Not being able to do the things I used to,the way I used to, i.e lots of planning and pacing now. I HATE IT.

*Having to wrestle with myself to allow myself to grow in my understand about what's really important to me. Such a painful task. I very much preferred being totally in control and able to do pretty much anything I wanted, work as hard as I wanted, exercise as much as I wanted, stay awake as long as I wanted.
But now, it's a humble little me who has to accept (ACCEPT!) limitations, and that's a real pain in the butt (no wonder I have neuropathology pain there!).
It's a slow, painful process. Sometimes I make some progress and learn to be truly thankful for the positive moments, but most times I just fall flat on my face and end up in bed for hours, literally hours, when it's not even night.
Balance is such an attractive word to me and I really do fight with it. My placid self steps in for a while, thoroughly defeated, but not for long, and I'm full of optimism again, only to be shot down. Will I ever learn?

*Oh, my typing is atrocious - meant to say 'balance is unattractive' not attractive - see, my Fibromyalgia even defeats me there.
(thumbs not working today, really trashes typing, maybe due to new medication.)

*The lack of support and understanding from people who are SUPPOSED to love you no matter what,"in sickness and in health,for better or worse" and being told it's all in my head and I just need to see a psychologist and I will be cured!!
IF ONLY IT WAS THAT DAMN EASY!! If all the specialists I've seen in over 30 years couldn't cure me, and all my GPs couldn't cure me, and all the various meds couldn't cure me, then seeing another psychologist isn't going to cure me,is it?

*I am a strong, physical, go getter, who likes to do things for herself (work, household main, fix my car etc.) I want to be able to still do that! Very few people understand that! Actually, only my kids and my BF get it.
My friends and rest of my family don't. After all these years, they still don't get it!

*Reduction of mental capacity. I used to have an almost photographic memory, loosing my physical strength and the lack of understanding of others.

*Not being able to be the wife, mother and friend I should be. I feel guilt for not doing the things I "should". My brain is always saying I can when my body knows I can't.

*Knowing that my own body can't be depended on.

*Not enjoying a night out ,forgetting things ,the pain ,spending life in loo, being cold and having no energy.

*The lack of energy and pain.

*Giving up work has been the hardest as I loved my job as a school cook and like everyone else, having no social life. People who just don't understand how ill we really are if we over do things, and also having to give up driving.

*No job, not seeing people and being out every day. Like living prison sometimes.

*Losing friends, and people saying to me after I tell them how bad I feel, well you look great! I want to look as crappy on the outside as I do on the inside!

*First I want to say thanks to Team Awnty. you really seem to get it. It's hard to come to terms with the loneliness of fibro.
The lack of understanding from most people who don't have it. The unwillingness on their part to try to understand/support me by reading & asking questions. Stress on finances.
The constant bombardment of symptoms 24 hours a day. Always trying to hide how sick I really am which makes me sicker. Just not being the same person. My life has been turned completely upside down but I still refuse to give up.