The Complaint Department

1. I’m having trouble convincing people in my small town that there’s anything wrong with me. The medical rollator and walking cane that I use for the past 2 3/4 years hasn’t clued them in yet. Or the staggering, shuffling steps. Or the fact that it takes me 10 minutes to walk a block sometimes. Well, one store in particular just gives me the evil-eye whenever I shop there, so I’ve not been back there since last fall. At that time, I was in there to complete a deal to buy a washing machine (about $800), but nobody would give me any service, though I was sitting in my rollator in front of the cash register for 45 minutes while they served other customers behind me.
Finally, I just got up and left the store.

However, sheep manure was on sale this week, and I need it for my short raspberry canes; I’m not giving up completely on my garden, though I’ve had to cut it in half this year. Well, yesterday, I worked up a good ‘mad’, and just barged into that store and ordered 2 bags of sheep manure, delivered, and they were so surprised that they did up my order without comment and delivered it in half an hour.
GBS changed my brain; I used to be very shy, but now I hardly give a darn sometimes.

2. Something has eaten off all my basil seedlings, so I went to another store to get more seed. There’s a really snarky clerk there, swears a lot, and sneers openly and acts really bored with her job. I checked out the seed rack; now this is a dollar store, so the seed has always been 3 for .99, but lately they’re charging more, so the price went up to 3 for $1.29. After looking at all the seed packets, I could only find basil which had an expiry date of May 2007, lettuce with an expiry date of 2006, and parsley with an expiry date of 2011. Not too promising, but I took it to the counter. She rang it up and also added both taxes (12%) on the total. I told her, No, it’s vegetable seed, so no taxes, only the flower seed is taxed. I’ve bought seed for years this way, and from that store too. Well, she got huffy and said that’s the way they sell it. So, instead of backing down, I told her I wouldn’t buy it; as I was leaving the store, she made a few more comments “I was wrong, and not to argue with her”, to which I turned my head and said “That’s B.S.” (Well, it was B.S.), and pre-GBS, I was a mouse, but now I’m a worm that has turned.

The pain has been really bad for about a week.
Muscle recovery time from any activity is now several days to a week, but the back-pain is constant. I’ve been trying to out-smart the pain by planning my work to accommodate it. Sit-down work, stand-up work, move-around work. In cycles. With rest in-between.

Got some relief from the pain from the acetaminophen. Hot choc at bedtime and a warm comforter.
Also was able to get outside this AM, and weed my backyard garden borders. I sit on a Rubbermaid footstool, and weed with a hoe, then move around the garden area. Got a lot done, and it looks so nice now. I’ve been so worried that if I can’t keep the place up, the landlord will force me to move. They keep hinting that I should take a place downtown (tiny apartment), but I’ve worked so hard on this place, and I still need the space and privacy for my employment as a music teacher, though I have only a few students left.

Blooming in my borders:
1 ‘Happy Thoughts’ lily with 12 blooms
2 pots of purple Jolly-Jump-Ups (different kinds…windfalls)
A pot of pansies; was one pansy, but I made cuttings (windfall)
4 Shasta Daisies
3 Impatiens: red, blue, salmon
Lamia (pink)
Stella D’Or Daylily
Mother of Thyme (purple)
A big clump of Bluebells (by the tiny pebble-pond)
One pink hollyhock.

The Valiant grapes are enlarging (12 bunches); tiger lilies just starting to bloom. I’m picking a little bowl of rasps every day; the Nanking cherries are ripe; there’s a mocking bird sneaking to them every day to get some. He lives across the street in a tall tree, and sometimes I see him walking across the road, stopping and stealthily sneaking toward my cherry bushes, stopping, then sneaking closer and closer to get some. It’s such fun. He can have em all; I ate several bowls of them, and my taste buds are now so bitter, everything tastes awful. The GBS changed my taste buds; I never know what is going to smell or taste bad next.
Until my next complaint,
Your forum member,
Donna

Thanks Cathy, for a great post, and to all the rest of you too for sharing.
You won’t believe how much rain we’ve been getting; almost every day.
Last night, this morning, this afternoon. I’ve got regular puddles of water in my basement. If it wasn’t for the Glade Sense n Spray (FPC), it would smell like a musty sewer by now, but everytime I open the downstairs door, I hear …Pssssst…. and a lovely scent wafts up.

After all my painful slavery in the garden, I have only about 8-10 cherry tomatoes developing on my 6 plants. And the few planters I have left now are constantly deluged by my overflowing rain-gutters that the landlord won’t clean out. My plants are getting daily baths. 😀 Sometimes there are only a couple of leaves showing at the top of the pots, the rest is under water. Good thing the soil is sandy. I’ve got one basil seedling that’s managed to survive it all.

Well, this week, I had 1 day when I found the strength to go out there and do something. So I sat on a stool, and washed all my plant pots, dried them somewhat, it’s so humid they didn’t dry overnight, it’s like the Amazon jungle nowadays here. Had to take them down the basement to dry them. My crochetted plant pot on my patio table has grown a petrified fungus base from all the rain, I could hardly pull it off the table (and the GBS didn’t help) so I hosed it down and hung it from the clothesline. Anyhoo, I’m simplifying, and the thing that really grumped me about it all is that it means that now I’m over the hill and the rest of the way is downhill. Makes me so mad.:mad: You know, you build up your life and then comes the point where you start reversing that. Well, I guess it’ll be easier for me to take care of it from now on though. But whatever I have to give up now, I’ll never get back, and it hurts somehow to realize that.

So, now when I go out and have my coffee on the patio, there’s only the table, chairs, a wastecan, 2 bags of sheep manure, and a few drowned pots.
But I do have raspberries every day. My back’s been killing me all week, and I’ve almost emptied my aceta…n bottle. (Well, you don’t expect me to spell acetamenophen every time, do you???) :p In fact, today I did NOTHING, NOTHING AT ALL because of the pain. Well, I picked a few rasps and some cherries, and ate meals, and did my accounts, and internetted, and cleared my desk, but other than that, the whole day was a total loss.

Another thing I’ve been doing to simplify is to deal with all the stuff in my closets. Oh for the first 2 years of GBS, it was all I could do to find the strength for the basics of living, but it caused me to make out my will, and one of the things I had to do was make an inventory of my ‘assets’. So, I looked at all the stuff I have accumulated, and realized that if something happened to me, I would not want my kids to have to deal with all of that.

Thanks to my GBS lack of mobility, I’ve now gained about 40 lbs., and nothing in my closets fits me except the odd article of clothing. I’ve worn the same pair of black pants for almost every day of work, or for going downtown for errands. Good thing I have lots of sweaters; they fit. So I’ve been cutting up my former clothes into rag-rug strips. That’s a few garments every day or so, and so far I have about 2 big bags full. Then they have to be sewed and woven. On my better days, I only have energy for an hour or so of standing and cutting and sewing, so this is going to take some time. But the closet is looking less stuffed, and if I ever get these rugs finished, my kids will have them for heirlooms. That’s another thing I’ve had to face, the changes to my body, and the end of wearing red or white pants, jumpsuits, dresses I have to wiggle into (not that they’re tight). Everything has to fit loose now, and be comfy and suitable, and be easy to get into without losing balance and falling down the stairs. I hope I can finish cutting up this big pile of clothes by the end of August. But I’m keeping just a couple of former outfits in case of some unforeseen weight loss in future.

It’s just so hard to accept these changes, and to redefine life realistically. But it had to be done, so now I’m doing it.

Oh guess what, one of the docs left a message on my phone, wants me to give their kid music lessons. And I’m sure you know that it caused me some STRONG, mixed feelings, to put it mildly. KRAKATOA. I better not elaborate.
Probably want to spy on me. My condition doesn’t seem to register in some ways; and regardless, people always want more and more from me. But I’m on vacation right now, so I’m not answering for a few days, at least. There…the foot is down.

Your turns…

The pain seems to be harder to take as time goes on. I’m using up the topical pain creams on hand, and it gives me some relief. I’ve had 2 nights of sleep in a row, what a blessing. Before I went to bed I rubbed my feet with mint foot cream, soaked them, applied Pain Gel and went to bed. It helped enough to relax me to fall asleep. I have to do something to improve my feet. The muscles are in constant pain, especially the heels; my shoes all hurt me. I need more cushioning, but I’ve already got 2 foam insoles in each shoe, and if I put in anymore, the shoes will put too much pressure on my feet.

My brain has recovered enough so I don’t feel the dull tiredness all the time. Sometimes, I have a portion of my old get-up-and-go for brief intervals, so I want to do things again, but as soon as I do, the foot, leg and back pain gets very bad, and I literally can’t stand or take steps in order to do my activities. Trying to figure out how to get things done.
Take care, everyone; blessings!

I know what you mean. It’s true, we’re tired; and many of the medical people don’t listen and that’s frustrating and appalling; and we yearn for the way things were.
But we still have a life, it’s just not the old one.
And coping with our new life takes everything we’ve got left from our old life. Quite a challenge for us in our pain and weakness.
But we can do it!

NGG, I’m very sorry for your loss. Death hits hard, and the shock and loss are a grievous ordeal. But those we love know that we love and care for them; there is a bond that can’t be broken. “Love is as stong as death; many waters cannot quench love, neither can the floods drown it.”
I put my faith in Jesus Christ who conquered death, and offers the gift of eternal life to all who believe in Him. He is my one hope; therefore “Death, where is your sting; grave, where is your victory?”

GBS is a destroyer and thief which robs us of our old life, and if it distracts us from many important things, that’s because it takes a terrible toll on us.
We daily muster everything we have left just to stay alive and keep going.

May God comfort you at this time, and may precious memories and hope sustain you.

I’ve lived in government housing for many years, and have raised a family and supported myself as much as possible with a home occupation by earning a modest income teaching music lessons for about 25 years. I continue to do so in my present unit as per a written contract (for the past 13 years). Now, the housing department has lately been harassing me to move again.

And I just can’t. I’m too weak and damaged from GBS-CIDP, and I don’t want to lose my home which I’ve worked so long and hard on, be displaced again, and be in upheaval and be thrown out of work. It’s an outrage!
Why don’t they go jump in a lake and leave me alone already???
Things are more than hard enough for me to cope with now without their stupid, cruel, bullying tactics. 🙁
What kind of a world is this where fools and devils rise to the top to oppress the rest of us???
Tis the season to be threatened with homelessness, and joblessness!
A curse be upon all oppression!