Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
I must admit that on reading the posts in this forum I was touched, informed .. and depressed.
Been living with this thing for 6 years so I understand that living with a chronic illness can be depressing. I understand also that those who monitor these boards and post here may be at their lowest period, who wants to stick around after they are better? And I understand this may be the one place you can honestly cry out when you are down, without feeling judged.
Despite it all, I want to encourage us all to bring the hope back into our experience. Bring back the joy, the gratitude, the anticipation and take small steps each day to wring a little joy out of our lives..wherever we are at.
Please note by nature I am a pessimist and can't stand perpetually happy people, but after spending 3 years locked in perpetual depression, in order to survive I had to learn to consciously manage my thoughts and to force that dose of happiness into my life daily.
For 8 months I was bed bound. Single parent, unemployed, watching my bills pile up, my bank balance drain down and worrying about who is going to take care of my child. My house went into foreclosure, my electricity and phone got cut off and I was being called to school because my son looked neglected and the school was concerned. Every day I lay in bed exhausted, depressed and in pain, fretting not so much about my future, but about my son's.
Every one of those days I had to force myself to count my blessings. Some days it was just looking out the window, seeing a bird fly by, and thanking God for the beauty around me. Some days as I lay cursing God for taking my life from me, I had to remind myself to thank him that I still had life, and with that life came hope.
Its still a work in progress, just yesterday I was so angry and frustrated because I had to go to my son's school to get his report. I managed to speak to only 2 of his 10 teachers, I was so exhausted I went straight home. I should have gone back to work. I need to work, to afford the medical care I need, to take care of my son..I must retain the ability to work as long as I can .. yet this was derailed by a simple call to school.
Today he is wheezing, I know I should take him to the doctor but I know if I leave work today its another day missed, so I hope I'll be strong enough to take him tomorrow. Every day I wonder how the hell I'm going to get through this.
And everyday I remind myself that I am here, that I do have the strength that I have now, so I try to make the best use of it. That life has a way of working out even when the trail seems dark. That when one door closes, another opens.
I remind myself daily to welcome joy into my life. I laugh, I am mischeivous and make others laugh. And I remain grateful, every single day, for every single blessing that I can think to count.
I wish you all joy today, regardless of what havoc your bodies might be wreaking.
Been living with this thing for 6 years so I understand that living with a chronic illness can be depressing. I understand also that those who monitor these boards and post here may be at their lowest period, who wants to stick around after they are better? And I understand this may be the one place you can honestly cry out when you are down, without feeling judged.
Despite it all, I want to encourage us all to bring the hope back into our experience. Bring back the joy, the gratitude, the anticipation and take small steps each day to wring a little joy out of our lives..wherever we are at.
Please note by nature I am a pessimist and can't stand perpetually happy people, but after spending 3 years locked in perpetual depression, in order to survive I had to learn to consciously manage my thoughts and to force that dose of happiness into my life daily.
For 8 months I was bed bound. Single parent, unemployed, watching my bills pile up, my bank balance drain down and worrying about who is going to take care of my child. My house went into foreclosure, my electricity and phone got cut off and I was being called to school because my son looked neglected and the school was concerned. Every day I lay in bed exhausted, depressed and in pain, fretting not so much about my future, but about my son's.
Every one of those days I had to force myself to count my blessings. Some days it was just looking out the window, seeing a bird fly by, and thanking God for the beauty around me. Some days as I lay cursing God for taking my life from me, I had to remind myself to thank him that I still had life, and with that life came hope.
Its still a work in progress, just yesterday I was so angry and frustrated because I had to go to my son's school to get his report. I managed to speak to only 2 of his 10 teachers, I was so exhausted I went straight home. I should have gone back to work. I need to work, to afford the medical care I need, to take care of my son..I must retain the ability to work as long as I can .. yet this was derailed by a simple call to school.
Today he is wheezing, I know I should take him to the doctor but I know if I leave work today its another day missed, so I hope I'll be strong enough to take him tomorrow. Every day I wonder how the hell I'm going to get through this.
And everyday I remind myself that I am here, that I do have the strength that I have now, so I try to make the best use of it. That life has a way of working out even when the trail seems dark. That when one door closes, another opens.
I remind myself daily to welcome joy into my life. I laugh, I am mischeivous and make others laugh. And I remain grateful, every single day, for every single blessing that I can think to count.
I wish you all joy today, regardless of what havoc your bodies might be wreaking.
Hugs, D
14 months ago I was struggling to take out the trash and could barely get thru the day exhauted. Hope of ever working again was not even in my plans bc I was so ill.
Today I am working out 20 minutes a day and I just interviewed for a job at the community college as a teacher for the Student Success Center and they are waiting to put me in a position.
I have decided to try to participate in a 5K in March.
I agree that the forum can be depressing and I had to get my mind OFF of sickness and my head/ thoughts into wellness....
It's posts like yours that honestly depress me sometimes. While I'm happy for you that you've recovered, your post comes across that it's possible for everyone to just get out of this, just have some positive thoughts, etc. I've had this illness over 26 years now and for most of that time I've been hopeful of recovery, tried enough things to write a book about it, I could just never except staying this way and that's why I've tried my heart out to recover, and I won't stop. I'll keep trying to beat this, but the reality right now is that I'm still very sick with this, and sometimes what gets me through the day is just being honest with what I'm feeling and going through, and reading the honesty of what others are feeling and going through too.
I loved the majority of MaxPB's post. I didn't like the title or when she said this forum depressed her, but I thought the rest of what she said was good and so I just dismissed that part, and figured by the rest of what she said, she really didn't mean how it came across. I do think it's good to try to be thankful for even the smallest blessings of the day, like she said, seeing the birds fly by the window. It's good to think of things that bring us joy. It's good to hold onto hope. We'll die without it.
But sometimes when the darkest of darkest days come, and the pain is unbearable, the hopelessness sets in and we can't see anything good. But if we could just honestly tell someone about what we are experiencing in that moment, talk about the fear, the hopelessness, and just have someone listen without judgement, without telling us we're being a burden, depressing, selfish, or whatever, well I think just having someone that could just listen to us in that moment could be the very thing that helps us get back to hoping again.
Compassion asks us to go where it hurts, to enter into the places of pain, to share in brokenness, fear, confusion, and anguish. Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. Compassion requires us to be weak with the weak, vulnerable with the vulnerable, and powerless with the powerless. Compassion means full immersion in the condition of being human. Henri J.M. Nouwen
The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing... not healing, not curing... that is a friend who cares. Henri J.M. Nouwen
It is depressing to be chronically ill and many of us share the same challenges. If we can't come here who else are we going to talk to?
No offense meant, hope the mesage of hope came through.
We all have a very tough life to live with this chronic illness, it's easy to say to always look for that bright bed of roses every day, but some days it's just not that easy especially when the days of illness turn into years.
Frankly with what I've been going through I always thought I'd find the problem, fix it and get better. Reading all this CFS information does stress me out a bit as I feel it is dead on with regards to my experience, but I don't want to accept that this will be the rest of my life.
I'm seriously considering resigning from my Rotary club, which feels like cutting off a limb because for this has been a place where I can reconnect to my old self. Rotary is a service group made up largely of successful professionals and entrepreneurs. Even though my attendance and participation has dwindled to nothing over the past years, its been important for me to feel like a part of them and to use opportunities to give back where I can. Lately I've been facing the realization that its time to let it go, I miss 90% of club meetings, events and functions. About 2 months ago my company moved my parking spot. Now I have to walk to my car, drive to meetings, walk to the meeting room.. its been too much. My attendance has dropped to nil. Time to throw in the towel.
My son came home yesterday with a bag he got from the school nurse. He tore the strap off his school bag. I taught him how to sew it back on but it came off again. The nurse loaned him a replacement. I was livid! Since he started school in September she has given him replacement clothing more than once and now a bag. I feel like he's a charity case and I am mortified that a stranger has to do for my child what I am too exhausted to do for him. Plus his grades are down, went from straight 'A's to a collection including only 1 A and a cople of Es. STRESSED!
Won't start in on the work issues, I feel like things are falling apart around me while dealing with my body is taking up all my attention and energy.
Had another doctors visit yesterday, long, exhausting, inconclusive. As usual I have been sent off to do a long list of tests for all sorts of things. I discussed ME/CFS with him but he seems to be of the old school..dismissive. He immediately focused on my need for pyschological care. He did promise however to review the material I emailed him...
My last straw was when I got into my car to leave work yesterday and the alarm system locked me out.. there I was in the lot with this damn car alarm blaring, unable to get in, calling aroudn frantcially for help..SERIOUSLY!! Then I got home to find that yet another exterior light has blown out. This is a security issue as the front of my house is totally dard at night. One light has been out for months, I'm too weak to climb a ladder to change the bulb.
I was so exhausted form a collection of major and minor stressors that I could hardly get out of bed this morning. It's stacking up to be a LOUSY day , and its a day when I have an important client meeting on which my largest contract depends.
So my choice today is to i) wallow in how badly life just generally SUCKS! ii) find a way to refocus my energy and make something good out of the day.
Guess which one I choose. Off to find me some affirmations...This too shall pass.
A lot of the things you mention being stressful are not the illness symptoms, but other things like getting light bulbs changed and getting your kid to the doctor - things that can be done, by someone.
did you say (sorry can't remember if that was you) that you'd belonged to Rotary for years. and you believe in god so there must be some church-type people around. Can't any of them assist you on a practical level? if you have family, aren't they concerned about your son? and you, for that matter.
wish I could help, but this is all I can do
The way my life is structured I have many responsibilities and little support, its a lot to handle for a healthy person, with CFS I have to work hard to not become overwhelmed.
I do have to try to be happy in the midst of the storm and sometimes it is hard work but it generally seems to be worth the effort. Remember a smile, a laugh, any positive emotion triggers hormonal responses in our body, so being happy actually does help to ease our physical woes.
Working actively on moving my focus away from my illness and toward something more fulfilling...will let you know if works.
But I wouldn't unwillingly be shouldering this illness without a cause and I wouldn't unwillingly be shouldering this illness without the Grace available for me to soldier onward to whatever the future holds.
Yes it Sucks bigger than the word Sucks can ever encompass. Thats just the way it is for me at this point in my life.
Al