Chronic Fatigue Syndrome Support Group

I wish I had some advice to offer. I live with my brother and I'm homebound. I do have two friends and occasionally get out when one of them drives. My brother is supportive but the rest of my family I don't talk to any more. My mom was supportive but she passed away. Some people try to educate family and friends but if their not supportive it will probably fall on deaf ears. If there is a support group near you I would try and go to that. You might make some friends there that are in the same boat and give you someone you can talk to in person or over the phone.

Try to ignore the ones that are being abusive. When they start being abusive just get up and walk away. I know it hurts when it's your own family but ignoring them is the only thing I can think of.

I belong to several groups on DS and I get alot of my support from people in this group and the Fibromyalgia group.

Hope things get better for you soon.
Sending Hugs and Prayers

Yeah, I don't know what to say either. I live alone and am mostly homebound. There are plenty of married people who feel equally isolated.

PERSONALLY, I am given great strength through my faith and faith community. Here and online.

Plug into what you can ... and learn to let the rest go. It's ok. You have JUST as much value as anyone else.. You (we) got dealt a lousy health hand.

Hi SurvivorAll!

I see that you have just joined DS. Welcome!

I am so sorry that you are dealing with the ignorance you are describing. Not understanding you or your illness is one thing, name calling and verbal abuse is something else.

You need support. We all do. I think that of my single friends with CFS, most of them find interacting socially to be extremely difficult and family connections are just about all the interaction they have the strength to deal with. I can't imagine how awful it woul be if those people were hurting me on a daily basis!

If you are recieving nothing but nasty, rude, remarks, and verbal abuse, you have to get involved in as much in the area of support groups as you can get!

My church provides a great resource for me in this area!! Many people and pastors are willing to come to the home and visit, or call...even make meals. Do you have an outlet like this??

DS is a lifesaver. The people here will respond with love and understanding. They will offer unconditional support.

I hope and pray that you are able to surround yourself with some positive and supportive people, on the net or visiting your home. Reach out...you may be surprised at the people who will reach back for you!!

Hello all,

Thank you very much for your nice supporting words,having your understanding, support & hope means a lot to me, since i never got any of this from people around me.

I am glad i reached out to you, since all what i need right now is just hearing some good words that I never used to hear.

Please keep in touch, Wishing you all the best

OP

You just for the most part explained my life... so I know right where you are coming from. In the last month I have nearly passed out twice. My family care, but they don't care (if you know what I mean). The docs say I am just having anxiety and that nearly passing out twice in a month is normal for someone my age... whatever!

Today I should call my family and let them know how I am doing, but I will not. Because they really do not care how I am doing unless I am very ill... then they get all concerned.

You know how you are doing so eff all the people in our lives who want to judge us when they do not have the right or the info to accurately judge how we are doing.

At least I am not bitter...

I was deeply disappointed in the reaction of my family to my diagnosis. They mostly do not speak of my illness, I guess they don't want to reinforce what they seem to think are delusions.

They did not support me when I was caring for Dad in his final years, that was an extremely difficult time for me. I'm not sure how I managed to care for him, as sick as I was at the time. They just laughed and said I would do fine.

It is very, very difficult...but I found you have to separate yourself from them in your mind as much as you can, so their abusive comments lose the power to hurt you. Don't try to change them, their minds are made up. Be strong.

all i can say is don't hold on to the hurt. i have gone through a lot of bullying and emotional turmoil in life... for a variety of reasons beyond this illness...considering my personality i don't think i could have grown up in more akward place...

but with cfs I can't hold on to that... its just more stress than my body can take. this is a simple meditation technique I use when I have difficulty with my family.

First picture yourself walking down a set of stairs. Count backwards as you slowly fall down the stairs... as you drift into a meditative trance picture a door at the bottom of the stairs. it leads to a large open field. take a minute to smell the grass, the sunshine. You hear running water and you notice there is small brook nearby. As you are walking you notice that there are stones leading to the brook and the bridge over it. The stones are cool under your feet, and the grass brushes against your body as you move through the thick growth of the field. The bridge is wooden. Take a minute to look at the age of the wood, notice its craftsmanship. As you step onto it you can see down the length of the brook, it heads off into the distance - beyond your vision. As you sit on the bridge think of what is bothering you.

If your family has done something to you, try to think of the spcecific actions the specific words that they said that hurt you. As you do this picture the feelings and emotions you have as a rock. Feel the rock, is it jagged or smooth? Sharp? How much does it weigh? What color is it? as you are feeling the rock, think of your family, the thing they did to you, and allow your mind to fill in the characteristics of the rock. When you have it formed completely in your mind, you must release it into the water. Watch as the water engulfs the rock. Watch as the water swallows it up. Let it go. Watch as it falls to the bottom. and consciously make an effort to let go of the weight, of the sensations, everything you pictured in your mind because of the rock. Just let it go... you don't need to carry the burden any longer.
You should feel lighter.


Lather, rinse, repeat :)

judderwocky is right... try not to hold onto the pain and anger and hurt. Unfortunately if you do, it will only damage you... the people who have been awful to you and treated you in a dispicable way are not worrying about how their actions and words are affecting you... do not let them torment you further. It is very hard to let go, but worth trying. I have a lot of hurt held in me and have been working to release it. I do believe these negative emotions are very bad for my physical well-being.

There are so many of us who identify with you. We may not be in the exact same situation, but I find with CFSers, there is always something that resonates with me when I read individuals posts about their lives and emotionals. The impact this disease has on us is enormous, not just physically, but mentally and emotionally. It affects every facet of our lives. One thing I do believe is that it has made me a stronger person and more empathetic, so I hold onto that knowledge and try to be there for people who will appreciate me and do understand.

Vicky

I agree. Don't hold on to the anger and disappointment it will just burn you up. Try everything you can to remove yourself from the situation.

I couldn't take the bullying from my family anymore. When I ended up in the hospital they all came running and then told the doctor things that made the situation worse than it was, (an allergic reaction), especially when the doctor was a non-believer in CFS/FM.

I moved and didn't bother to tell my family. They haven't even noticed. I haven't received one call or email. It does still hurt, but it is better than having to take the bullying and accusations of being mentally ill because I have an illness that they don't care to understand.

Seriously, you need to get away from it. The stress of it will only make you worse.

Get the bad feelings out in any way. Journaling is great! Just anything to get it out and try to focus on any positive. I know it is sooooooooo hard and I have so much trouble with it. Today I am dealing with dizziness but maybe not tomorrow!