ive been looking around your site for a while now but never said anything because im unbelievably shy!i can keep conversation flowing once its started but find it very hard to start one. thankyou to the folk who added me as a friend im sorry i havent spoken to you. you seem a lovely group to get to know and i would love to be a part of it.
i unfortunatly suffer from mental health issues and physical health which i think is the cause of my lack of confidence.wasdiagnosed with bipolar years ago, personality disorders last year and fibro and cfs this year. im finding it relly hard just lately to keep my emotions under control, i have found that the pain makes me low then my low mood makes me hurt more its a vicious cycle. sometimes i feel that if i did only have the one issue it would be so much easier but lifes not like that is it?!
iwas admitted to hospital for a week, just come home with not a lot of confidence in my future when i consider that my gp basically said theres no hope for recovery just deal with the symptoms. the nurses seem nice enough but didnt really seem that bothered because i wasnt in for "anything serious" i was sent in with horrific pain that kept me in bed all day until the doc had an ambulance out.
i am scared, very scared about the future.youngest logan is nearly four now and he was born with spina bifida and hydrocephalous. as i become weaker and more in pain he becomes bigger and heavier until i dont know what will happen.
im worried about my other two children melissa and jake because i hear them upset whn im in pain. im worried my husband who has been wonderful will one day have a breakdown or something disasterous because he cant cope with evrything hes now doing alone. i never wanted to feel or be a burden on anyone else, sometimes i cant help but just want to sleep and never wake up.
im so sorry this turned out miserable, was meaning to jump in and finally say hello but its turned into a sob story by the looks of it, sorry.
thankyou for taking the time to read a little more about me, i really hope to be a part of your friendship too
love sarah x
Hi Sarah, I’m so glad you have added a discussion, and please don’t apologize for anything so many will be blessed by reading your story. That’s how we can reach out to each other and give support, share things we have in common and just explore new ways to learn to deal with fibro, as well as other things. Unfortunately no one has fibro alone, and like your husband most just don’t understand our pain, I still have yet to understand why they don’t get it… There are so many discussions on that topic alone, so focus on how much your husband loves you, while never giving up trying to help him understand. He won’t get it completely,but he can learn how to support you, post … How to get my husband to believe me ? You will be surprised at how many understand that exact issue.
I’m so sorry about your young son, that’s got to be the hardest challenge in the world… My heart hurts for you, but I read your profile and I’m so happy you view him as your little miracle. stay positive and thankful and that will always lead to a feeling of gratitude. It sometimes can take our focus off the worries about what if…
Hang in there& keep posting, the support here is great !
I’m so glad you have joined us !
Hugs & blessings
What incredible courage it took for you to write this and tell us about yourself. Considering that there are about 1250 members in this online support group, and that there are many that we don't hear from, I would say that there are likely several other members who feel just like you.......shy and not knowing where to start to get an online conversation started. Many of us here grew up before compuuters so we are not accustomed to communicating with so many members. We are more accustomed to face to face conversations or if we are shy we mostly listen. Sarah, lots of us are like that.
But I am so very proud of you for taking this first step. Your posting was not a sob story at all, it was the difficult truth. When you live with chronic illnesses you have to be very strong to deal with all the symptoms. This is what "healthy" people don't understand. Believe me if they lived one week in our bodies they would know. And as you pointed out you are dealing with a number of chronic illnesses. Many of us have to rest after we have been out in the public. But you have small chhildren and dear Logan has health issues that require constant care from someone who is well.. I can certainly empathise with your feeling of being scared about his future because you are not physically strong enough to care for his needs.
Sarah, you are stronger and more courageous than you even realise and we are so glad you found this website because there are many caring people here and now that you have taken that first courageous step you will find people responding to your post........and soon you will be feeling more comfortable "talking online" to your new friends. Perhaps you will feel more comfortable talking one on one. Or talking to the people who have responded to your introduction here. Whatever way suits you is just fine.
Have you explored the groups that we have here? You may enjoy reading there or joining those groups.
Sarah, we welcome you with open arms. We care about you. We are here for you. If you need to vent we are here to listen. I will say again how proud I am of you for taking this first step.
Well,you have more than your share of challengers.Tou are clearly strong after all you found your way here. This is a great spot, because you can say what ever you like(well more or less) and get lots of support.
It is infuriating that so little credence is given to the experience of fibromyalgia, it seems that each person has to actually experience it before they understand it. In many ways it is just like having a mental disorder,in that few people " get it".
As frustrating as it all is we all share this experience and therefore we understand what each other says. As you’ve probably already found out there’s also a lot of information available here. I am sorry about your youngest son, I am a nurse and nurses children with your son’s comdition and so understand the difficulty in lifting and holding a growing child with such a comdition. I’m not in the States so I don’t k ow about the community services available to you but I’m sure others on this site do.
Look after yourself and know that this is a place that you can always come to to talk. Cheers Barb
Hi and I am very glad you joined us, This is a lovely helpful site with some very nice people. xxx love vickie xxx
I am new to this site and I am so glad I found a place I can come and vent about what is going on with me to people who understand above all. You are not alone and have come to a wonderful place of fellowship. I know exactly what you are going through and how disheartening it can be. I have a blog post I would love for you to read that I wrote when I was having a bad day that I thought you might enjoy reading. If you ever want to talk I am always available as I know
many of us are here as we plow through a terrible affliction.
I hope this helps....just to read that you are not alone
Hi Sarah, we all have a sob story of some kind so don’t be embarrassed hon. That’s why we are here. My concern is the same as yours with your children. I only have dogs, and I have a difficult time taking care of them. Wow! I feel for you hon.
Unfortunately, a lot of people do not feel our pain. Sorry. I wish you the best.
I'm so proud of you for posting! When I first came here, it was a couple of months before I would join in. Once I finally did, I suddenly felt like I became a part of the family instead of the shy outsider just reading, with still so many questions of my own. It's made a tremendous difference for me, connecting with other people who understand, because I don't have that otherwise. I hope you will feel the same way once you get to know us.
I've been fighting MI's my whole life, then add fibro to the mix it becomes overwhelming. But it IS manageable, I promise. You need to find the right doctor, one who will work with you and your MI doctor, to get you the correct treatment. Many fibro patients go years and years either suffering, or searching for someone and some thing to help them. It's just a matter of finding that one gem of a doctor who cares. Someone who will address your pain, and get you some relief, not just send you home. I know it's very difficult to see a specialist in the UK, but have you gotten to a Rheumatologist yet?
You have so much on your plate, and I'm sure the upcoming holidays are daunting. We need to remember to trust in those that have stuck by us, like our husbands. Even if they don't understand completely, and have to pick up so much of the slack, they are still here. I'm trying to learn to take the burden off of him in other ways, like doing his business paperwork, or making plans for him to spend some time with his friends, away from me for a while. It's not much, but I have to find a way to contribute, because I'm afraid he's going to burn out.
Don't think that you have to struggle through this alone. All of us here can relate to your concerns, and we're always around to chat about anything that is bothering you. Please utilize the amazing support system we have going here, because it really will help. So hang in there, and consider looking for another opinion, because I think the way you were treated was just wrong. Everyone has a right to pain relief and good medical care, not to be brushed off.
can i just jump back here and say thanku so much for all the replies, you guys are lovlier than id even hoped for! xx
Reading your post gave me both the courage and inspiration to join into discussions as well. I am usually a person that stays in the "background" so to speak and stay unnoticed. Lately, I have been feeling as though I am at a breaking point and need to read about and talk to others that actually understand what I am going through. Thank you for sharing your story. I look forward to reading your future posts.
I'm sure Sarah had no idea that she was opening the gate for other shy people to come and share their story. I'm glad Tammy, that you are feeling like sharing too.
But whichever way suits you is fine. Some people prefer to message other people privately from your Inbox to another's Inbox. Other people prefer, or are comfortable with, taking part in Discussions that are open to all members of the site.
I think there is a place for each of these ways of communicating so whichever you choose is just fine.
Our arms are wide open to accept you as you are. Again I must say that of all the fibro sites that I have researched I have found this one to be the very best. And we are growing every day!
I'm sure you had no idea that your Discussion was going to generate all these responses.
Yes Sarah, as you are reading the responses you can jump in say something specifically to a person's posting. Or you can post at the top a thank you to all the people who have responded. And now you can see that there are other shy people like you who, now because of your courage have found the courage to start posting too.
Sarah, this is a miracle that is growing and growing. All because you admitted that you are unbelievably shy but for some reason you decided to take a chance.
For you Sarah I hope that you will feel more comfortable posting. I have a feeling that you might be more comfortable posting privately with people plus now I think you will sometimes post a response to some other Discussions on our Main page.
Love you Sarah
Please accept my sympathy for all of your suffering. You have so much on your plate to start with - the Bipolar Disorder as well as your son's hydrocephaly and spina bifida (which I have a special sympathy for since my mother had a child with the same issues) - and then add onto that the fibro and WOW, you've got a powder keg there.
We do have to learn how to adapt to fibro because it is, unfortunately, very painful and without a cure or even very decent pain control. There are some drugs that help to control the pain but it's an illness that likes to play with us with the pain it inflicts. So yes, we do have to learn how to cope with the pain. But the good thing is that we do get periods of relatively pain free activity. It's during those times that we're able to recharge and feel normal again, so they really help us to adjust to the fibro.
I understand your concern with your youngest child. It may be that you'll have to eventually interact with him with much less physicality. I know that I was working in a daycare setting for a while and it KILLED me to pick the kids up and hold them. I can understand and appreciate that he is also fragile due to the hydrocephaly. Do you have an older child who might be able to gently assist you with holding and physically dealing with Logan? I realize another adult would be the best solution but it might not be possible. However, perhaps your son would be eligible for some extra care due to your and his disabilities?
I so feel for you, a mother who's worrying about her children and her husband while tramping through two major illnesses. But please understand that your husband stays with you out of love, and he wants to help out as he can. One thing I've found out rather too late is that it's incredibly important to let your husband know how much you appreciate him and all he does for you. It's amazing how much people flourish when they're given some love and attention. And they are better able to bond with you and stick around when they know you appreciate them and think they're great. If you worry about him leaving, make sure to build him up so he feels special with you. That seems to be a very good way to keep men happy.
Thank you for coming to our site and sharing with us. I hope that doing so has helped you feel some relief. We're here to help others feel more normal despite having a very abnormal illness.
Hugs and sympathy,
That's a great sentiment LIsa! It's great getting to know the people that really can understand. I've made some lifelong friends here that I never would have without finally speaking up.
I'll share anything also, I think it's the best way to be able to help each other.
Thanks for the post.
Don't let yourself and stay in bed, even if you only go to the couch, where your around others. It has helped me (plus a heating pad and electric blanket). I'm sorry for all your troubles, you've got more than anyone should have. My advice, keep coming to this site, keep talking, it helped me tremendously! Have a better day :)
Could someone share the link to The Letter To Normals.
Sarah, I'm sorry that I'm just reading your post so late; my heart truly goes out to you and your lovely family. I want to say hang in there and write to us as much as you can. We all have some sad, true and wonderful stories to share, to help encourage one another, because truthfully, this life sucks. But it is what it is. I don't look forward to waking up each day, but I get up and do what I have to do. I'm learning with this illness to worry less. When I get stressed, my body reacts badly, so I just choose not to worry about much these days. But you just hang in there, sweetheart; I cannot imagine having to care for a disabled child, and I have 4 children; my hat's off to you, Sarah. Continue reaching out to us on here, and continue seeking help for yourself and your family.
Spirit1, I like your idea to worry less. That is truly what we need to do to survive with the least amount of unbearable physical pain. But there are some members here who live with other types of pain as well as the pain of fibro and that is hard to even imagine.
I'm going to hang on to your phrase........worry less. Thank you more than you will ever know for this post.
Thanks Rachel; it's funny that you didn't know what my illness was until I read my profile just now...oh my, I am so sorry; must have been a case of fibro fog or something. I was diagnosed at the end of 2011, so just making it a year now with the fibro and it's getting worse. What is getting better is that I'm learning new ways to cope and I feel really sorry for everyone's suffering on here; it isn't pleasant to live in 24/7 pain, plus life's issues on top of that. All the best to you.