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.
I share both views. Few years ago, I had to spend most of my time in bed, unable to work. At present, I work part-time and can enjoy life. I found it helpful to accept the illness and maitain hope. When I have bad days, I allow myself time to feel whatever I am feeling including negative emotions, without repressing them. However, I soon challenge my thoughts and focus on my capabilities and the good things that came with the illness. E.g. my life gained a different meaning. I make an effort to make the most of my capacity and accept that it is alright just to 'be' without having to do and achieve.
I am also on my own as I choose to live in a foreign country without family. I have few friends who I see ocasionally. It is very hard to deal with this illness but I won't define myself by it. I think the best thing we could do is to be kind to ourselves and do all what is advisable to get better, if you can. We don't have control over the rest. It is also normal to seek support when going through different emotions.
By the way, I would like to have a buddy for mutual support. In particular if you are in London. Although I do not mind to keep contact by email or telephone. You can contact me by email: deliaspa@msn.com. Thanks
14 The spirit of a man will sustain his infirmity; but a wounded spirit who can bear?
This has long been a passage from the Bible that I remember well. It means that whatever your PHYSICAL problem is, it is bearable. You can carry on in life with whatever physical malady. But, if your spirit has been wounded, this is almost unbearable. Now, the big question is, "What does the writer mean by spirit?" Does this mean if you're depressed your spirit has been wounded? Certainly the departing of the Holy Spirit in some form is a wounding of the spirit. So, this is the thing I believe we have to work on--our spiritual state and not our physical state. I just skip or pass over all post that are related to popping this pill, or taking this herb, or going to see a certain doctor, etc. The reason is because that is all related to the physical state of our being--in our case our fatigue. No, I'm much more concerned about the spiritual state of a man or woman. Because if our spiritual state is strong, then we are able to deal with our fatigue problem. I'll admit most days I wake up and just pray to the lord that I could die. As the day goes on I may get a little better and actually play with the kids in the apartments below and give them a coke or help fix one of their toys, etc. Their parents think I'm a little werid though, and the kids have been told not to come up here and stand on the balcony outside my unit. And quite frankly I am a little weird. I don't work, I don't have a car, I sleep until 1400 sometimes and then stay up all night. I wear the same thing all the time, and I am a little depressed. But there are some good times too when for some reason my spirit is much better. A few nights ago, I took the kids out to the abandoned field next to the hotel here and we built a small fire out of a used pallet. These kids are mostly 6 to 12 year olds and for some reason that was exciting to them. Not all of them were allowed to go though because some of their parents just don't trust me. But, the ones that weren't allowed to go almost begged me to talk to their parents so that they could go. These poor kids around here are so bored.
Anyway, I'm just saying that even in the same day I can start out wanting to die, and sometimes on good days I can end up almost like my old self used to be.
I guess what I'm saying is the main battle for me is in the spirit realm and not the physical realm.