have Meniere’s Disease and someone actually told me I would feel better if I would just hold still for awhile… I guess sleeping 6 to 8 hours at night does not count as holding still!

I can relate all too well I had 3 young boys had to work at night 530pm-abt 3-5 am. I was doing great on the combination of meds at the time. I was able to do what my family -the kids needed. Never the good housekeeeper though- rather spend it w the kids or learning something! Then in one visit it was all in my head and i was given Lyrica the doc said fibro. is a bucket diagnosis- and gave me an rx for fibro??? I had an aweful reaction to it it was a Wednesday and I had worked 14 hours I took the new med and fell out cold on the couch. My mom came by totake my youngest son to a school play at the high School and couldn’t wake me. Instead of…how canI help? Anyting I can do? What do you need? 4-5 simple questions NEVER ASKED but called the state to investigate me as a mom . MY OWN FAMILY TRIED TO GET MY CHILDREN FROM ME AND now ex husband. I had no clue 9 #’s and a lengthy conversation w the soc. worker was easier that a question????? 3 social workers showed up one day as my home was being repaired from 80 gallons of water flooding it from the bathtub. I had shot records- all up to date, report cards, everything they were told i was lacking in I proved wrong. They said now what about medication….I was honest as I volunteered 4 a drug test w the state ….I passed as my ex did too. Not enough next up…parenting classes for 9 weeks- I was working and still went – the psychologist who taught them pulled me aside the 1st class and said just tell me who did this to you who called-bc I see that you do not belong here. I told her my family did, I said I just got off work too a few hours ago. With amazement she said please just sign in and the last week come to my office….She typed a letter to the boss and said ok you will never be bothered again. Well by them maybe not, my own mother, sister- and whoeverelse, knew I had no support from my spouse at the time and instead of building up- TORE DOWN as we were divorced 2 mos later and HE used his mommy and DADDY’S money to get the boys. I was alone now no ins. chronically in pain…….my dad had passed away a month prior from pancreatic cancer and now I had no dad kids husband I lost my job, found another got pegged w child support too. I was going down fast. I slept in my car, showered at the YMCA , barely ate didn’t wanna . Because instead of 4-5 words9 numbers and a boastful conversation were easier!!!!??? I spent my 1st Christmas alone at 33 , alone, no family tree, no dad. My life as i knew it was gone. I fought the fibro alone , i prayed and steadfast true I could just make it one day at a time. i did and I fought each second of the way I found a wonderful man now I can clearly see he’s never given up on me. Honest from the start I was and no regrets I have with that. I told him all the meds i had to take, that my ex gave up our son at 11yrs old- left him abandoned with me alone. i worked 2 jobs to make it work. He didn’t quite know what to say but never gave up came back each day. he saw the pain me saw me fight, then asked me to be his wife. I could not beileve someone wanted me as broken as i was sick and damaged. My sister said I was noting but trash a drug addict, prostitute, escort and everything bad imaginable. Then he called my very best friend she set him straight said-just give her time you know what it’s like for her she’s been thrown out like trash and surived. Her son is her world you see he now calls you dad. She will miss her dad and older boys cry, breakdown, and shut you out. Just give her time. She has agony each day you can clearly see. He did just that I had so many walls built up had been so judged I had had enough! My own mom will never know how this wonderful man has let me grow into myself – I knowI am not the same a better version I ‘ll say. As love so unconditional i had nt ever known. He said just stop the work I just want to see you not go through that much more hurt. I took a leap of faith and did just that. He says its ok to just be me. He didn’t want a maid he only wanted me. As i was robbed 3 yrs. ago raped and beaten at gunpoint I lost everything, i owe back child support. for 2 years plus. My son he fought for me to live and be each day with his mom. 5 years he prayed then one day the call- be home I am bringing him to you I do not want him anymore. I can’t even get an ID card bc of the money owed to him for the years i suffered PTSD from the gun that took so much from me that night- they took it all. I want my baby boy to have a mom a dad and family. He does not trust so easily but he is my son. I did finally see a psychiatrist e said it’s not in your head I can see-you were diagnosed by 3 drs. The pain it is killing me A stroke , a seizure so violent my back broke. I have no ins. No ID bc I was a victim of armed rape and robbery. That dr. saw the fight in me through all the hurt and pain. He met my counterpart and then could see why I was NOT DEPRESSED- anxious yes PTSD yes sleep disorder yes-the fact I was sitting there amazed him after he heard the story above. 93% he said are not around to say , or they are on drugs to the most extreme, or alcohol whatever the vice may be. I had none of them. I spoke the truth that within 7 yrs. I had lost my dad, my kids, had my car stolen, had a severe heat stroke, been cared for by strangers- now family to me. I live with the fear that anyday my son my ex could just come and take. legally it is his right I ws so scared to lose my baby again I said nothing to the court have not seen my older 2 in more than 5 yrs. I survived a lot. I want to be a wife again legally my sons mom alone. I cannot even stand for ten minutes w/o my back giving out . I cannot pay whats owed and I am scared and dying slowly inside- so blessed i know to have this man and child, Can anyone offer advice as to how I can get through all this and not worry while fighting the fibro and fatigue/now back kidneys too???? Desperately afraid. PLEASE ANYONE OUT THERE I live in houson,tx. I have prayed and hoped please if you can help us be a family as I know my illness is such a hardship on them too yet they stand by me steadfast and strong with patience and true love. Thank You I have never shared my story before.

“No, I just carry it so I can smack idiots like you with it…”

Read a story recently about a woman who was recoverying from a double mastectomy while having just started chem for breast cancer. When a “friend” wanted to come visit and was asked not to the “friend” told her.. “You act like this is all about you!”
Give me a break being sick is all about me. I have been dealing with my illness 24/7 for the past 26 years. If I don’t want to listen to your useless suggestions I have the right to say so.

LOL Sorry to hear you had so much bullshit told to you! I think we all hear think now and again. it makes you want to laugh! What are these people thinking or are on? The sense of humour sure helps though doesn’t it?

I was diagnosed with endometriosis in 1994 and was told that it was all in my head. I was told that there was nothing wrong with me and that I would get better if I saw a psychotherapist. Over the years I have had abuse shouted at me and people telling me to pull myself together. I love this site and love the way that the Spoon theory shows what it’s like living with a chronic illness. On Sunday night my mum gave me grief about finding enough energy to get to London to see a concert but not to see her. Well, the concert (Neil Hannon from The Divine Comedy, singing live on his own for his 42nd birthday) had been booked for months and I was worried that I would have to sell my tickets. It took everything I had to get to London and it killed me. I then spent the rest of the week in bed recovering…but it was worth it. People who are well and who have an abundance of energy just don’t seem to understand the sacrifices that we, as people who are unwell, have to make. I went away for the weekend and didn’t rest or sleep enough – so ended up sleeping all day yesterday and most of today. I was meant to be going to the cinema this evening but I can’t face it. It’s too much and my pain isn’t settling. I have to go shopping this week for an outfit that I can wear to London…and again, am dreading it. Where the hell will I get the energy from to traipse around the shops?!! Hope things will be better tomorrow!!! Thanks for everything. You are an inspiration to anyone with a chronic illness.

You won’t believe this! I went to a new doctor, filing out the new patient paperwork it asked about my religious affliation. When he came into the room he took me OFF my pain medication, and began preaching! He said when I’m in pain, think of each time my Savior was beat 38 times upon His back for me and died on the cross for my illnesses & sins, to be healed and for my salvation!!! He missed his calling. Then he ordered PHYSICAL THERAPY at his office, not even an x ray! I have faith, but I am now in Pain Management with an MRI and machines in the office. They saw the cause of my pain and are treating it! Unreal the doctors, no- QUACKS out there!

I actually had a manager who said “I’m tired too. Maybe I have lupus”. And ironically, this took place in a HOSPITAL I worked at.

I’m so sorry you experienced that. ((hugs))

I often hear “All you need are some vegetables and a bit of sunshine”. While this is well meaning, it somehow suggests that I am only ill because I don’t look after myself. And as for sunshine?! Nooooooo!

I was told by a friend that I haven’t got better yet because I actually don’t want to. When I want to be well, I will be.

Having a chronic illness, I have been given all of these suggestions except the 10th but it’s only because they care. I don’t feel that poking fun at, or complaining about people making these suggestions is appropriate or nice. While i KNOW it’s not easy for you to deal with an illness, it’s not easy for your loved ones either. However harsh this sounds, the reality is, it’s NOT all about you. They’re just trying to help. Be grateful you have such caring people in your life who are trying to help you, and not counting down the days until the illness wins.

I am 36 and was diagnosed with Lupus when I was 15. I have heard everything under the sun from people that dont know me and have no idea how hard it is to just get out of bed in the morning.

On a positive note, I only surround myself with friends that understand and dont judge. It is so refreshing to have good people around you that really care about your well being.. My husband is very supportive and understanding and my daughters are the best little helpers a mother could ask for. I am also very fortunate that I have doctors that are very well educated and care about my health. Having a great doctor can make all the difference in the world..

I have heard that one alot too, and its not even legal in my state..lol

I have heard these before..OMG…

(modern) medical hypnosis exists and actually is quite effective on some patients with chronical diseases / pain / etc.
I know it looks silly, but it really is (no relation to the old, hypnosis-shows though). And most doctors don’t know about it because it is quite a “new” branch.
Really.
It’s not magical, and on many people, it DOES work.
Some info there : http://www.ericksonian.info/

Mmm and along with the questions are the comments in response to explaining your condition. Fatigue? ” Oh yes I get really tired when I’ve been overdoing it” Pain ” mmm I get a bad back as well” Or the classic ” Well we’re all getting older aren’t we”?

“It just is not possible to be that sick for that long. You should be DEAD by now if you had anything real.”
From my dying mother with cancer who never had any pain and slipped peacfully into coma before dying.

I feel exactly the same way!! Even my spouse doesn’t try to understand like he used to, if you smile watch out they’ll have you doing all kinds of stuff cuz you must be feeling better! I have quit talking about it , I told him one day, if you knew everything that was hurting or in spasm you would cry! It’s lonely out here!! 🙂 found out today that they are closing the fibromyalgia network I’m sad, it was a way to not feel crazy!

Do you worry about whats in the future? Well stop it. It’s going to happen anyway. and you have wasted a lot of energy you could have used to fight your disease. 

I get this:
“Have you seen a doctor? Have you had tests done?”
Really? Gee now why didn’t I think of that?

Or yes like Snooch said about people suggesting that you need to think positively to be well. That drives me nuts when I get that in regard to my depression. A positive attitude is great to have but it doesn’t magically fix things.

Hugs to all my fellow ‘spoonies’. 🙂

I have a coworker who constantly tells me I should try acupuncture or local honey (for allergies). Even when I am not talking to her but to someone else and she happens to be in earshot. Had to walk away and texted my mom to tell her I was about to slap somebody to calm down!

Hahaha Are you serious? Can anyone suggest of trying hypnosis? If it is so then surely the worst suggestion one can give to someone with a chronic illness.

Fibromyalgia, migraines, celiac, diabetes, arthritis, two liver bisections, hypertension, multiple strokes, heart attacks, copd, electrical shock,mild brain damage causing seizures and the list goes on. Ikeep getting that sense I used to work full time for the pay and benefits I should be able to continue … not anymore. Oh and my latest doc said I need to eat healthier without even asking what I am eating. Just 24hrs. I dare you. Oh and the assumption that I need antidepressants becausewhen they make me hurt worse from poking me I must be suffering from depression or some other mental disorder. Actually I am doing pretty good all things considered.

@snooch
holy crap that is insensitive. hugs xxxx.

@many
“You’re looking well today” – yes I know that one. Of course I look well today. I just spent a month recuperating and avoiding you so you wouldn’t see how awful I look normally, and because I simply couldn’t see you because I am unwell. So well, duh, what did you think?