LETTERS TO FRIENDS............ OCTOBER 2004 ================================================ > Phyllis Griffiths wrote: > Hi Gayle, > > Sorry that I am taking forever to reply. I've been so wasted that time and > season is lost to me, again. > :-{ > Yesterday I could not do much more than sleep. Today I have some brain and > eye working time today, so I'm working away at my inbox. I saved your post > because it was important to me to reply to it. > > Oh how we tried to make things better for the PWC community, and our online > friends. I look back at it, and I look at how things are now and all I can > do is sigh and sadly shake my head. I cannot say that things are any > better. People are still getting sick, and people are still dying. The > "patient" agencies in the US are still too busy playing politics, the > people inside the group wanting to make themselves and their group appear > to be so very important and everyone else appear so bad and faulty that > nothing of value is done. Meanwhile the sick people continue to be denied > support, research continues to be stifled, and people keep dying. > > And the only real, solid support comes from within little groups like this > one. Us old-timers who are tired and worn. Doesn't anyone care anymore? > You are right on how the group dynamics work against the whole, as people > try so hard to have some sort of control over some aspect of their lives. > And with the illness comes emotional swings and irrational periods of > thinking as parts of the brain are denied proper blood flow. Eruptions > occur, and once the illness moves on to stifle blood flow in a different > area of the brain the person is left humiliated by and sometimes appalled > at what they said. Great disease that gives us a different brain injury > each week/month/season to live through.. and everyone else around us as well. > > I am with you on the wish that a cure will be found in my lifetime. Or at > least public acknowledgement of the suffering and acceptance that we are > sick. This public apathy (at best) to denial (at worst) robs people of the > last vestige of a role in life that they can live with, that of patient. > The psyche of the majority of PWC's cannot live with the role/label of > "slacker/liar/lazy bum/hypochondriac/neurotic/hysteric", because they/we > are none of these things. Our society makes people like those out to be > "lower than dirt" and treats them accordingly, with "mocking and scorn". To > accept this is worse than being dead. I know too many people who reached > this place and accepted the idea that they (and their families) were better > off if they died.. and so they died. > > That is topic was so taboo on the early lists only made matters worse. > People need to grieve for their friends, need to understand the ever > present and unanswerable question "why?" "Why , by the grace of God, do > not go I?" This is the big WHY? Why did he/she die and WHY do I not > die? You and I Gayle have spend so many hours working through the big WHY > with friends, and with people we didn't know, to try and keep people from > making a fatal descision before their mind cleared enough so that they > really knew what they were doing and why they were doing it. > > Then we burned out, as did our friends who took part in the suicide watch > and aid. It seems like a lifetime ago, doesn't it? > > The loss of self can mean a loss of life.. > May healthy alernatives come to pass... sooner rather than later. > > Huggs > Phyllis > > At 08:41 AM 10/2/2004, you wrote: > > >Phyllis, > > > >Once again you speak great truths in your empathetic and understanding > >style. I will try to find a copy of the book I gave to friends a few years > >ago regarding dealing with grief and loss. IMO, it addressed the topic in a > >way many more could understand than some of EKR's writings ( my copies of > >her books are tattered and marked up!). > > > >I remember those horrid suicide watches, and have participated in too many > >others as well. I also think that we both have agreed that one reason many > >of the patient communities fail online is because that is one area where > >people felt they could have some control over lives spinning out of control. > >When that real or imagined 'control' was threatened, all their anger at the > >illn ess and its losses erupted like a pyroplastic explosion and destroyed > >not only the group dynamic, but also many newly formed friendships and > >tentative rebuilding of circles of support. How sad a commentary on our > >systems that refuse to provide healthy alternatives for chronic illness > >patients. > > > >My wish for all of us, is that a treatment is found in my lifetime, and a > >cure for the future generations. > > > >Hugsnlove, > > > >Gayle ................................................................ Date: Tue, 19 Oct 2004 15:00:15 -0700 Subject: Re: [PWChat] Life Choices (was - Hello from someone with CFS) I agree with you Nancy, 100% For us, "Life Choices" does *not* mean the same thing it does for Healthies. At one time I thought that living life under the set routine of job, kids in school, activities in the evenings, shopping on Saturday, yadyadyada.. was sooo very boring a lifestyle. Now I long for the reliability of that routine.. or at the very least at the ability to physically be able to rely on a day-to-day, week-to-week routine. Every day for a PWC is a day filled with choices, unless of course we are too sick to think at all. It's hard to accept that the only thing we can rely upon is that we cannot rely upon our bodies to function as we want/need them to. And that our world must revolve around our illness not matter how much we try for it not to be. So that leaves us back making choices. What we cannot do today, we may be able to do tomorrow. Or next week. Or next month. If it is important, it will be done later because we cannot do it now. We can choose to rest, do something else, or try anyways knowing full well that we cannot do the task well if at all. I hate it when I'm told that I should at least try and do something I know I cannot do. Not just told to try, but pushed to do. I hate the build up of "sure you can do this." " I know you can do this." " All you gotta do is give it a try." " Think positive here." because when I fall on my proverbial face no one says "well you gave it a good try, and good on you for trying". They say instead "you didn't try hard enough" or "I told you to think positive".. always implying that it was my intention and fault that I failed, when I told them I could not do it in the first place! But this is not to say that I don't push myself all the time with the "maybe I can do this today" for things I can stop doing and put off part done. Choices within choices. I have found that it is always helpful to have an out, permission from myself to stop doing whatever it is I'm doing if I need to. Otherwise I would be too frightened to do much of anything. Hope your day is good. Huggs Phyllis At 06:51 PM 10/4/2004, Nancy wrote: >It's disgusting that we are forced by illness to make these >constant decisions, leaving so much undone in the process. >But at least for me, it is the only way to manage. > > >Hope this helps! > >With huggs and health.... > From wo286@victoria.tc.ca Wed Nov 17 14:24:40 2004 Subject: appologies for being MIA again Sorry to have been missing-in-action again. Been having problems with the ISP, and with my emotions again. I'm going through a bout of depression and find myself wanting to break into tears often. It's probubly just due to exhaustion, which plagues me. I think that if I get hit with another "crisis" anytime soon I may break. My cats have been sick with cat flu, along with Morris needing extra care due to his arm abcess and surgery. Morris is back to getting into everything he can in the kitchen, which is both annoying and endearing. MaoMau's bug is giving him a head cold from hell, so I have to work at getting him to eat since he can't smell anything and cats need to smell food before they will eat it. I have a pile of emails to work my way through, and will get to everything as I can. My legs have been more problem than usual, leaving me to stagger and wobble about. It's very annoying to have to sit down suddenly when the legs start to buckle, especially in a store. Had that happen several times on Monday. Staggering and struggling around the house is one thing, but in public it's another. But embarassment and fear aside, it's exhausting work to push the legs into holding me up and getting me to where I want to/need to go.. even if it is only as far as the bathroom. :-( I think what I need most right now is to be able to spend a few days in bed, resting.. with no one to have to take care of, and someone to take care of me for a change. I think it might do me a world of good. The care part isn't about to happen, but the rest part isn't optional for much longer. Hope you are having a good day. Huggs Phyllis -- From wo286@victoria.tc.ca Wed Nov 17 14:25:34 2004 Subject: Re: [CA-SIG] chat: appologies for being MIA again Hi Betty, Thanks for the good wishes.. I hope that your pain shot helps. for me, looking out for #1 means keeping my cats with me. I have many days when they are the only reason I chose to live another day. They get me through the dark days, bug me to get out of bed, encourage me, remind me to eat, and keep me from dying of sheer lonliness. I am almost completely housebound and go through periods of being bedridden. I cannot imagine being without them. They take care of me more than I take care of them. Hope your day is good. Huggs Phyllis -- From wo286@victoria.tc.ca Wed Nov 17 14:25:56 2004 Subject: checking in.. Hi all, a quick hello to everyone. I hope that everyone is having a good day :-) I was off to my doctor's today and got the results of my bone density scan. He said I'd scored a 2, so I have osteopenia and not osteoporsis just yet. He reccomended that I take calcium suppliments, vitD and get as much sunlight as I can enjoyably get now that the wet season has arrived. Since I had already been taking extra calcium, adding TUMS for heartburn, and have been taking an extra 2000IU vitD a day for quite some time, the only thing the doctor said he could add to it was to get as much extra excercize as I can. Yes.. I'm sure that as soon as I can walk without my legs threatening to buckle under me I will take up hiking in the woods again. He doesn't really expect me to be able to do that part of things, which is a good thing. I ended up just deleteing days worth of posts from my email box. I could not get through them all. So if I've missed anyone I am truly sorry. I handed off a copy of my school fire photos to the local police constable who is working the case. There was a note in the local paper asking for copies of photos and video so I called the nomber, and he came and picked up a CD I had burned. They are treating it as suspicious until it is learned otherwise. I had heard a rumour that the fire marshal's people had gotten a copy off of a person I had given a copy to, but the constable didn't know about it. He was interested in my photos because of the number of them and that I have a time stamp on them.. and that the stamp in my camera is working. He told me that they got a bunch of photos with the time stamp in a series only to discover that the time stamp was the same for all.. it was stuck on one time. Yikes! Well, hopefully my photos will be useful. Last Saturday a set of the photos went to the gal in charge of the school's archives. The cats are doing better. Morris's arm is healing nicely and he has started putting a little weight back on. MaoMau is still sneezing and snuffling. There are the odd sneezes from the rest of the gang. They are all upset with me that I am keeping them all indoors. Between cat flu and Hallowe'en I'm not wanting to risk things. I did have one silly person (on another support list) suggest to me that I should seriously consider giving up my cats so that I would not be as stressed as I am in dealing with sick ones. Well, she's a newbie to the group and doesn't know how important my cats are to me. From what I gather she doesn't have children either. Thankfully my good friends didn't say anything as upsetting. Enough from me for now.. Huggs Phyllis --