PHYLLIS GRIFFITHS DIARY MAY 2003 LETTERS TO MY FRIENDS [chronological] :::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: Date: Fri, 2 May 2003 12:38:24 -0700 (PDT) Subject: Sunshine overdose.. ;-] It's another nice day outside but my frenzy of activity has come to a stuck-in-the-mud halt today. Ugh! I think I OD'd(over-did) on sunshine. Yesterday I spent the afternoon out on my scooter, did some shopping and even got down to the library. Then I took a ride down an old rail line that has been converted to a trail. I hadn't been down that way before and it was beautiful. I had slowly creaked the machine up a long hill and crossed the four lane road at the intersection. I was almost home.. on the road I live along. I was stopped for the light to cross again as to stop off at the shop Don works at to ask him what he's like for his supper.. and the machine refused to move! The battery indicater said I hadn't run it flat, and if I had the throttle on I could push it along. I have a cell phone just for times like this.. I called Don. a few minutes later he came running across the road to help me. I have been having problems with the "freewheel" switch on the back end. The cats like to mark it :-( and it corrodes and sticks and shorts. Don wiggled it a bit and I was moving again. Don decided that we could use the take out service of our favorite resteraunt for pasta.. which we always enjoy. After supper I planted a row of lettuce seedlings into my garden as I notived the first row I had done was actually growing! The Peas are up and last years chard is going on forever. I don't think I'll be doing much more than catching up on email stuff and playing at my computer today. But who knows, the lure of the sunbeams is calling.. ;-) and soon enough it will be too hot outdoors for me. ::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: Date: Sun, 4 May 2003 13:57:41 -0700 (PDT) Subject: over did me again :-< I over did things.. and today I'm paying for it :-( Owy.. I just can't learn to stop pushing myself whenever I get some energy.. and the past week the powers-that-be smiled down with perfect weather and some energy to spare. Today we have rain and I ache everywhere. Wonky body control has left me with at least two dozen small bruises on my arms and legs. I can't remember where I got them because I was too busy doing things to let bangs stop me. The hurt now :-{ I spent the past week deliberatly not paying attention to the everyday struggles around me. I told myself that here was nothing I could do about them so I may as well enjoy the sunbeams before things got to hot and I'd be wilting in the shade. So I puttered and played by day and crashed by night. Today I pay.. My body is wonky and my brain hurts.. my kids are supposed to be coming soon and I won't be on the computer for email while they are here. Melody may do something to the computer while they are here. Then I'll have to figure out what she has done to it and how to use whatever it is she has added. Upgradeosis.. Or maybe they won't come at all and not call to let us know. That's very annoying. ::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: Date: Thu, 8 May 2003 21:27:12 -0700 (PDT) Subject: bad days.. I'm having a stressed out day.. sick kitten who is holding on against all odds, injured cat, other kitten off to new home.. foster-son in Winnigeg was driving himself and wife home from Dauphin where her grampa is in hospital just dx'd with cancer of bowel and liver and pancreas and they hit a deer.. luckally they are not badly hurt and the car is still driviable but the deer died. I'll talk with you when I get myself feeling stable.. it's hard enough right now just to get the joke and inspiration material out.. I didn't sleep much, can't eat due to gut spasms and feel fried.. I'll probubly be OK in the next few days.. ::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: Date: Sat, 10 May 2003 12:28:13 -0700 (PDT) Subject: :'-{ My beautiful 10 week old kitten, Hathor, was taken to the Rainbow Bridge at 11:30am,PDT, today. I'm sure that she was warmly welcomed there. as I write this a wind chime is gently sounding in agreement. Hathor is buried at the edge of the ticket that the cats love so well. I will be with you all when I can.. :::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: Date: Sun, 11 May 2003 21:26:45 -0700 (PDT) Hello all, I'm hanging in.. totally exhausted. It was Mother's Day here today.. so I'd like to pass along a HAPPY MOTHER'S DAY to all who celebrated it today. I was able to spent time in my garden today. I was blessed with Happy Mother's Day calls, and my son and daughter brought me a huge double bouquet of flowers. The stress has caught up to me.. my belly is acting up again as it always does after the stress pressure eases. Thankfully it doesn't act up during times of crisis. The kitten who went to my son's home is doing very well and that is a huge relief. Huggs to all :::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: Date: Wed, 14 May 2003 11:42:21 -0700 (PDT) Hello friends, I'm having a computer moment. I spent most of the afternoon yesterday working on my veggy patch. Slowly but surely I got my little garden planted and the patch worked on. I keep compost piles working, and have old piles now covered in long grass that I have been mining to build up the topsoil of my garden patches. Yesterday my little wheelbarrow broke, the metal tube of the frame holding the wheel on had rusted through at the bolt holes. I can't manage the bigger barrow, I'm just too small and weak for it. But I have my trusty bucket to haul compost in. Today a heavy downpour greeted the dawn, soaking the garden well and cleaning the air of pollen. The lilac's are in bloom at the corners of the house. Along the edges and in the back of the yard the yellow bursts of broom bush can be seen. I'm tired but doing OK. I'm hanging in.. :::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: Date: Sat, 17 May 2003 10:55:21 -0700 (PDT) Hello all, I'm having a low energy, feeling cold and weepy sort of day today. The weather outside is cool and damp, with a sky filled with heavy dark grey cotton ball clouds that threaten to wring themselves out in heavy downpours at any moment. Or get together and throw lightning bolts around. I might enjoy that. Pockets of brilliant blue sky open teasingly amid the greyness allowing bright sunlight to stream down creating temporary patches of warmth. But the cool breeze quickly saps away the welcome heat. I'm having a day when I long to be out in my garden, to get lost in it and away from the sorrow that fills my heart and soul this day. But the cold cuts through me with knives of burning pain and my face screams in agony. All I can do is look at a window longingly. I am feeling exhausted, of both body and spirit. Nothing seems to be really worth the effort of doing today. I'm feeling beaten down depressed today. It's a combination of things dragging me down. Illness and grief, exhaustion from pushing myself to keep on going, frustration that my body gives out and slams me to the ground in a swirl of weakness and vertigo and pain. Painful loneliness, an invisibility to the world that I must only see from my window. Isolation, the longing for human contact and interaction. Feelings of worthlessness, hopelessness and of abandonment. My husband is expecting me to somehow purchase household supplies with no money and get out to get them with no transportation other than my own two feet and a small shopping cart. He won't fix my scooter, won't fix the car. I don't know what he has been doing with his paycheck, but he hasn't been paying the bills nor giving me money for groceries. The telephone may well be cut off month's end. He just had a payday, and when I asked how much money I could have to buy food with he said "nothing". I asked my daughter to drive me, and I used credit for the purchases.. which means when my disability stipend comes in at month's end it is already spent again. This stress is too much for me.. I fold over in pain and struggle just to breathe as a panic attack trys to take over my body. I am humiliated deep in my spirit. I feel that I am a burden to my children. My husband treats me as if I am not here. My needs are of no consequence. He shuts down and turns away. We do nothing together. If I need something done I must do it myself. If I am too weak.. too bad. I want to run away, but have no legs to run and no where to run to. I hope this exhaustion lifts soon, that the weather turns warm again. I want the illusion of safety and security back. I cry for my kitten, she who had so much love and life. I miss her and her sister very much. I am so afraid that I will be forced to give up my cats because we won't be able to afford to feed them, and I am afraid of what I will do then. Meanwhile Don plays his "nothing is wrong" game. It's a cruel game. Huggs Phyllis :::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: Date: Mon, 19 May 2003 20:47:48 -0700 (PDT) Hi all, I spent the day out in the garden again, taking advantage of the day. On Saturday we had a half hour long downpour of pea sized hail. My garden turned white! Today three of my four tomatoe plants has died off. The fourth is small so I had put a hot-cap over it.. just a clear plastic soda-pop bottle that I cut the bottom off of. So the fourth one survived. Thankfully I still have a dozen back-up plants being hardened off so it's not a crisis. My hubby went out and got me red cabbage plants once I reminded him how much he enjoyed the cabbage I grew last year. I did transplanting today of parsley and chives, planted the cabbage, and weeded the veggy patch. I had to nap because of headache.. so I'm late again on my email. I have a chocolate cake just out of the oven. Hubby has been working on my scooter, fixing the switch. Tommorrow he has agreed to fix the charger. whew! I came up with the idea of putting a "mud flap" over the switch to protect it from cat marking. My local ME support group is in need of a new newletter editor and lay up person. My daughter has experience with newsletters, and she has urged me to take over this task with her help. She promised to get me a book on "Quark Express". I have done most of the work on getting the text for the current newsletter so it's only reasonable that I can put it all together. The newsletter is important to many group members for information on research, medical news, advocacy news, and little bits of humour and inspiration. It should be good for me to have this to do. I'm hoping to get a small piece of my life back by volunteering at the current incarnation of the local regional museum. It's currently sharing space with the local chamber of commerce and they need bodies to man the tourist info area next to the display space. Well, the old museum (building now gone) was the first tourist info booth and I set it up! I was Museum Society president in the late '80's. My husband is current president and it never occured to him that maybe I could do some work there and that it would be good for me as well. With my scooter fixed there is no problem in my getting there.. it's two blocks away. So keep your fingers crossed for me. I'm attempting to bounce back.. The thing I hate the worst about MS and ME is the cognitive and emotional problems it tosses my way. :::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: Date: Fri, 23 May 2003 23:06:43 -0700 Thanks Bente,Maide and Thai I'm in exhaustion mode at the moment. I wore myself out today. Until I can get my scooter fixed i'm on foot.. using a shopping cart to haul things around in. I actually got up early enough today to make Don's breakfast before heading out the door. I packed up my flaky pentium laptop and my digital camera.. which I can hook up to flaky laptop,, into their carry bags and into my cart. I added one of my canes, a canvas shopping bag, and a small umbrella, and off I went to see the Chanber of commerce volunteer coordinator and do some photography of the current museum displays. The coordinator wants me to commit to one 4hr shift a week.I think I can do wednesday afternoons for the summer. I did notice a distinct note of predjudice against disability. There is also the snob factor concerning my clothing. even tho Heather was wearing jeans herself, she indicated that the tourist info folks were to wear dark dress pants (preferably green) and a light top, until she canget propet t-shirts made up.:-{. I'm to do a trial shift Monday afternoon. I did manage to scrounge up some posibly suitable clothes. sheesh.. this is a semi-rural area with proudly rural communities all around us and clean good jeans and a clean button up shirt aren't good enough..sheesh! Thankfully the office manager isn't such a snob. I tried to install some useful programs on the museum office computer, discovered the flaky laptop was refusing to boot, and locked the office keys in the office as I left. The Chamber manager didn't even know the office door had a key. I felt embarassed and humiliated. But it turned out to be no big deal.. they'll just get in a locksmith on monday. Hauling the shopping cart all over was heavy work.I stopped off at a discount bread store near my home and picked up ten loaves.. at 50 cents each. I wasn't sure I could drag it the block home. I spent an hour in the garden grounding myself. Now I am exhausted. Only time will tell if this adventyre is going to work out for me, or crash me into being bedridden for the better part of the summer. But being bored out of my head only brings on depression.. I need to have something to do or just go compleatly crazy. Huggs Phyllis. :::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::