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BrandySpencer

Active member
Joined
Nov 9, 2015
Messages
39
Reason
Undiagnosed
Diagnosis
08/2015
Country
US
State
Mo
Hello everyone

Hi my name is Brandy. I was just diagnosed a few months ago. Been dealing with this for over a year. I'm pretty far advanced and don't get out much from hurting so bad. Just looking to meet to meet some people that understand what I'm going through.

Thanks!
 

DebC

New member
Joined
Nov 8, 2015
Messages
5
Reason
DX FIBRO
Diagnosis
01/2013
Country
US
State
PA
Hi Brandy, I'm also new to this forum. I'm just looking for people like me, that understand what I'm going through too. My husband is at times very resentful and at other times so understanding and helpful. My relatives try to lay guilt trips on me because I cannot attend HS Football games or take their daughters shopping. One relative told his daughter that she 'doesn't get it' that I don't give a [email protected]@k about her anymore, which is totally untrue. I struggle daily to function. They are so fortunate to have their health. They have no idea. I get very angry, feel sorry for myself etc. I blame myself. I know this is not good. I'm glad I found this forum. I've been reading and getting more information and feeling not so alone. I pray we all find some kind of balance and peace.
 

BrandySpencer

Active member
Joined
Nov 9, 2015
Messages
39
Reason
Undiagnosed
Diagnosis
08/2015
Country
US
State
Mo
Hi DebC, I'm sorry your husband is resentful towards you. Maybe if you would do some research together and learn together about our disease than maybe it would help him better understand what you are going through. As for not being able to go to football games and shopping. I completely understand. My 14yr old son plays baseball and I have had to miss a lot lately because of this and miss stuff of my our daughters. I am fortunate they understand the reason. As for your family you need to let her daughter know that isn't the case and there is nothing more you would love to do than go shopping. It just isn't in the cards. It's so hard to get out of bed let alone to go out and walk. Have you thought about getting a wheelchair? That's what I have to do if I go out for the day. There is no reason at all to blame yourself. I know it's hard some days. We all have those days. Just makes it harder to get up the little bit we can. We can just keep on praying. Hope this helped.
 

DebC

New member
Joined
Nov 8, 2015
Messages
5
Reason
DX FIBRO
Diagnosis
01/2013
Country
US
State
PA
Thanks Brandy, it feels so good to hear kind words from someone that truly understands. I use a cane. I don't have a wheelchair, but I should get one. I have made some adjustments in my house, like buying new furniture that's bigger and more comfortable, getting a new commode installed that is taller so it's much easier to get ion and off of, i bought a new king bed and a 4" memory foam topper, I bought a big Jeep Overland last year because I can slide in and out rather than plopping down into a seat of a car or struggling to get OUT of a car, got the heated and cooled seats with the rear view camera, but still that Jeep sits in the driveway.....it hurts to drive so I rarely go out. My husband resents me because he does 90% of the house work now. He won't hire a woman to come in, yet he *****es about everything he has to do. My daughter moved across the state to be with her boyfriend last year and she's the one I depended on to run errands, drive me around, do my house work etc. my husband was an exercise physiologist and knows much about the human body, so pair that with his enormous ego and he thinks he knows more than my Doctors. He just thinks I'm lazy and addicted to opiates. Other times he's great and let's me rest with my heating pad and be very sweet to me. My family truly does not understand. None of them come to see me. They are used to me taking their children on shopping sprees and spending spending spending on them and I just cannot do that any more! I don't even shop for myself! I get everything on line now! I just feel like the people in my life think I'm somehow faking it and it makes me so angry, so hurt. I'm only 51 and I don't want to live this way.
Thank you for the kind words, they are appreciated more than you could imagine! I hope you are feeling ok today. Ok is the best there is for us, there is never a day without pain.
 
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diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
HI to you both. Sorry to hear you are both dealing with this awful illness. Our loved ones understanding is so vital for us to help keep all our negative emotions we already carry in check...the guilt...the stress of how negatively we are viewed...the frustration and hurt that we cant do what we want and are often in so much pain staying in our pyjamas on the sofa is the best we can do.

Criticsm and judgement ....people keep suggesting what we should be doing /trying when only we know how much we can do and when just makes it all worse.

You are both brave just to get through each day with fibro......much braver than any family member or friend with their normal lives and smart remarks.

You can find lots of info on here or on the internet that you could show anyone you feel needs to understand...but in all honesty they never will truly get it but it will hopefully help.

I don't think i would have believed it was possible for the human body to suffer so much pain and all the other symptoms unless it had happened to me and i am a very compassionate intuitive person. TAKE CARE BOTH OF YOU
 

BrandySpencer

Active member
Joined
Nov 9, 2015
Messages
39
Reason
Undiagnosed
Diagnosis
08/2015
Country
US
State
Mo
I think you both are very brave strong people dealing with a disease that is as horrible as this. DebC I think you would benefit from having a wheelchair. I am 34 yrs old. I just used mine yesterday to take my 12 & 11 yr old girls to the zoo. Yes I am paying for it today. I hurt like hell. But is it worth it to see them happy...Heck Yes! I will take laying here in pain like every other day to take them out to the zoo in the wheelchair. Now for your husband I'm so sorry that he like this. Hopefully he will just hire somebody soon to come clean. I think maybe he is so stressed out from taking care of the house and taking care of you he doesn't want to admit that something is wrong. I have seen this many times with spouses. They just want to think you have a problem and they can fix you. Hopefully something will click and he realize what's going on sooner than later for your sake. As for your family they may never come around. It sounds like they are being selfish. More about the money than your health and that is sad. I hope your having an ok day.

Hugs
~Brandy
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Welcome , we all understand your worry and pains.i hope we can at lest stop u feeling so alone x
 

DebC

New member
Joined
Nov 8, 2015
Messages
5
Reason
DX FIBRO
Diagnosis
01/2013
Country
US
State
PA
Thanks ladies! It means so much to hear words of encouragement rather than put downs! It's sad that strangers have more compassion than my own family. I've been told it's a made up disease that doctors diagnose when they cannot find a reason for pain. What about my severe stenosis? I can't fake an MRI! Yes it's about money too....they are used to me giving so much, helping with everything, clothes for the kids, car repairs, footing the bill for a Confirmation or Communion party etc, well my mess are very expensive, especially the Cymbalta, and the Valium. The Valium is not covered at all and the Cymbalta is a nightmare because I'm on 90 mg and they don't make a 90mg capsule of that, it's 30 and 60 and in January I'll pay roughly 230$ EACH for the Cymbalta alone, then in February it goes down a bit, March a bit lower etc until I'm paying about 209$ a month for both, then here comes January and it starts all over again. We cannot get any help because we have too much money so we just have to pay. I take Norco and it's cheap as can be, I only pay 7$ for 90 pills! I take I think 7 pills all together, plus my co pays at my Doctors (PCP, Neurologist, Pain Management and Psychiatrist) and the medical bills from the shots I get....I have to pay a portion of that too. My psychiatrist is a 40$ copay alone! Wouldn't you think one of my nieces that love me SO much would offer one time, just one time, to come over and vacuum or do a few loads of laundry? After all I've done for them? Well they do not! I get so hurt and feel like I was being used. Ugh.
 

BrandySpencer

Active member
Joined
Nov 9, 2015
Messages
39
Reason
Undiagnosed
Diagnosis
08/2015
Country
US
State
Mo
I totally understand where your coming from. I take 10 pills a day. So we pay a lot for medicine a month and then to add doctors on top of that. It can get out hand. But you have to do what you have to do. But you are right you would think all the time and money that you have spent on your nieces they should be offering to come help you out. I would feel the same way. I'm kinda having my own pity party right now. And it may be wrong but I'm in the hospital about 9 months out of the year of other health issues and most my family doesn't visit or call. Now one of those family members are in the hospital. Well she is throwing a fit because I haven't visited. It's very hard for me to get out of the house anyways. People don't understand how much things hurt.
 

lunie74

Member
Joined
Dec 1, 2015
Messages
16
Reason
DX FIBRO
Diagnosis
10/2015
Country
US
State
or
I'm so sorry each of you is going through this. It is so.relieving though to seer for the first time that I'm not alone.
 

Nexi

Active member
Joined
Dec 1, 2015
Messages
90
Reason
DX FIBRO
Diagnosis
03/2002
Country
CA
State
Northwest Territories
Hang in there Debi...I'm praying for you. Just breathe and take one day at a time. One day, god forbid, your family may go through tough times with their health, and trust me from experience, they will be your voice, they will become your biggest supporter.

My husband was always good with me and my many health issues but sometimes you can see their frustration. A few years ago he was also diagnosed with fibro and granted it wasn't a severe case like mine but it gave him an understanding of the pain. Most times people just cannot understand what they haven't experienced first hand.

I know that it can get better, my fibro subsided for a few years but here it is back again, just as bad. Don't give in or give up my dear.

*hugs*
 
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