ME and Ophelia

Saturday, April 24, 2004

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Love thy neighbour
Love thy computer company

Perfect weather yesterday and today. Speedboats out and about. These four posts are notes to myself. A diary entry. A log for Spring of this year. I'm aware others are reading this. It's not to elicit sympathy. Or pity. I'm not whingeing or moaning. Simply cannot recall what's happened over my last four birthdays. I'm blogging what's happened this week. So, next year, God willing, I can look back on April 2004 and see what has changed.

Past few weeks have gone by in a blur. Just managing from minute to minute. Like a robot on remote control. Stress is so distressing and debilitating. Felt real low. It feels cruel when people like M-- cause stress over petty inconsequential things. It causes such pain, I'd feel less if they beat me black and blue with a stick.

When stress happens, it runs through my veins like battery acid. On top of the never ending daily exhaustion, flu like illness and burning muscle pain. Distress inflames my brain til I can't think straight. Hands and feet go clammy freezing cold. Toes on right foot tingle hot like chilblains. Gums ache and stir up a back tooth that starts throbbing like it wants out.

Concentration slows up but intellect is not impaired. Something physical occurs that assaults my body within seconds. Poisons my whole system within minutes. An overflow or underflow of adrenalin or cortisol - or the immune system attacking itself. Yes, that is a good description. It feels like the internal body is attacking itself. Red fire alarm bells loudly clanging and jangling every fibre of my being.

Makes me feel so wretchedly awful, it's hard to imagine death being less close. Base of spine becomes tingly and numb. Joints in knees and arms throb. Neck and shoulders feel like they've been stung by swarm of bees. Eyes dry and itchy. Eyeballs sting and burn with exhaustion. Head and face heat up with fever. Throat sore. Clogs with sheets of cellophane. Lips dry and peel.

My birthday on Tuesday lasted two days. People were very kind. The activity made me feel extra ill. Phone calls. Two sets of visitors PKTD. 27 cards - beautiful cats - one handmade KT. Opening gifts. Laugh over magnets. Beautiful tablecoth. Flowers. Bright red and yellow tulips. Blue irises. Yellow and green daisies. Home baked almond cake. Treats. Bath oils. Cat magazine. Hugh Fearnley-Whittingstall's Escape to River Cottage videos. Chocolates. Cheque. Cash. Conversation. Many thank you's. Organising cards etc., for three other birthdays. And supervising getting the guest bedroom in shape for Cs visit May 4th. Just wanted to cry. Not for sympathy or pity or anything like that. Something switches on the crying and irrational irritability. Body shrieks. Eyes blub. At the slightest extra demand on body and brain, ie sit up, stand up, answer phone, move laptop aside. Blub. Blub. Scream. Stress. Shout. Help. Want away from this living hell. It's worse than death. Blub.

Some days it feels like the world has gone mad. And that people don't really listen properly. In my little world, I try to warn that stress causes me great distress. But it doesn't mean much to some. Stress is an overused word. Most probably feel they have enough of it in their daily life to know what it is.

And what could I possibly be stressed over. Laying here all day like lady muck seemingly without anything to do or a care in the world. They probably think, if she got up off her backside and moved around more - or was out and about in the cut and thrust of life - doing a hard days work - she'd soon have something to moan about.

Last year, I quoted from a survey that the suffering and quality of life with severe M.E. is comparable to the last two months of end stage AIDS. People use the words stress and depression to describe when they are feeling under pressure or low. Most do not know the true meaning. Or have the faintest idea of what it means to be so chronically ill that one cannot even sit up in a wheelchair...hour after hour, day after day, week after week, month after month, year after year...
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Neighbours from hell
Love thy neighbour

For the fourth year running, I'm having to deal with a neighbour abusing parking restrictions. Two years ago, because of all the parking trouble caused by this neighbour, the local Council kindly allocated me a temporary short term parking space - on Council land next to the neighbour's parking space - for visitors, deliveries, maintenance etc. Except for those two space, there's nowhere else for a car to park around here.

The neighbour appropriated the piece of "no-mans-land" land he parks on, by using it regularly for the past 30 years. It's not part of his property. He hasn't bought the land. In the past, I guess he was used to having his guest cars spill over onto the Council land - that is now the space allocated for my visitors, deliveries, maintenance etc.

Trouble is, the neighbour will not desist from allowing his visitors to park in *my* allocated space - for days and nights on end. He stands there in person, supervising his visitors into *my* allocated space. So it's not like he gets visitors turning up out of the blue that he cannot control. When he has no guest car, he parks his car half way in *his* space and half way onto *my* space.

Last weekend, his car and his guests' car were parked in the two spaces for three whole days and nights. I cancelled a visitor bringing shopping here by car. Couldn't stand the hassle and aggravation of asking the visitor to find him and ask him to move his second car. On Monday morning, I got all in a twist at having to phone the local Council yet again. And handling another visit from the manager. They'd sorted it out with the neighbour last year - and the year before. But the neighbour ignores everyone, including the Council, and does what he pleases.

This caused me stress and made me extra ill. My birthday visitors were due Tues and Wed bringing shopping and stuff. Even when he did listen to the Council and moved the second car, I didn't feel any better. Just knowing he'd be moaning about me to himself and his guests. Made me feel like I was a bad guy. Depriving him and his guests of a relaxing holiday. He lives elsewhere - in another town - and visits here for short holidays. Nine months of the year he keeps his car space empty by cordoning it off with metal poles, cemented into the ground, threaded with padlocked chains - so that no one can park there. Not coping very well. This is the best I can do right now. Be interesting to read this in a years time. To see what has changed.
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Dell hell
Love thy computer company

Last Monday and weekend were very bad days and nights. Wrote today's posts over past week. Not up to blogging Tuesday. Not enough energy to fit in extras. It's been a major task getting emails from the Dell over to the Mac. I've resorted to emailing them over to the Mac. Thirty at a time. If I am not quick enough to disconnect the Dell, after pressing send, they tumble back into the inbox of the Dell. I'm deleting scores of other emails as I go along. A laborious energy sapping process. Don't think I can manage to continue this weekend. I'll have to wave goodbye to the ones that have not emailed.

This whole computer situation, going on for five months now, has taken its toll. Dell, Apple, TNT, Microsoft data, Apple data, computer engineers, credit card company. TNT carriers losing my first Apple order. Getting refunded from Apple. Ordering from Apple and paying again. Sorting credit card being charged twice GBP 2K for two PowerBooks without the refund from Dell.

Not hearing anything from Dell since Feb 26. No reply to my emails. Last Saturday, I sent them four. Each bounced back from Postmaster@Dell. Spent Monday and Tuesday gathering info for a friend to contact them again. He kindly emailed Dell on my behalf. The ordeal getting to that point was unbelievable. I've had to pay my credit card £550 this month out of my current account in order to avoid interest on the second PowerBook. I'll be charged interest on £1500.00 when I receive my next statement if I don't get refunded from Dell before then.

Over the past two days I've handled several calls from Dell. And relaying the calls to my kind friend. Finally, Dell have arranged for a courier to pick up the laptop and components on Wed or Thurs. And will then process the refund. Thursday, I spent putting together stuff for pick up: webcam, speakers, CD DVD player, mouse, carrying case and other stuff, along with ten CDs relating to XP Pro. Replied to two emails from Dell itemising the stuff for pick up. I am truly grateful it's finally being sorted.

Apple is a pleasure to use. Much more calm and easier to use. So quiet too. Must buy anti-virus to avoid any more computing stress.
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My bed heaven
And hot water bottle hell

Over the years, my family and friends, have joked about how high my bed keeps on growing. It's a Victorian brass bedstead that I bought at auction 30 years ago.  It has no springs or base. A king size divan-base sits on top and acts as a base frame. On top of that is a mattress. Covered by a mattress protector. And a layer of thick orthopaedic foam. Then a king size duck down feather topper. Covered with a natural cotton fleece (so I don't feel the feathers) and a king size Egyptian cotton bottom sheet. 

That's just the bottom layer. On top, I have duck down feather pillows, an Egyptian linen top sheet, a king size duck feather duvet and cotton cover, a wool blanket, a cotton valance bedcover and a thick quilted king size top cover bedspread.  I've always had a thing about sumptiously comfortable beds.  Ophelia has to take a running jump - and flying leap - to get on my bed.  Each night, I prepare a hot water bottle. It has a nice soft cover. Tuesday nights are extra bliss because my home helper changes the bed linen and fluffs up all the feather duvets. It takes 15 minutes to make.  This year, I'm getting an electric blanket with a switch that just heats the foot end in the summer. Heh.

Thursday night at 10.30 pm my cosy bed was nicely warming with a hot water bottle that I'd prepared half an hour before. Exhausted, I clambered in. Shock. Horror. The bottle was hissing and fizzlng in the middle of my bed. Hauled it up and flung it out, dripping with water onto the carpet. I'd not screwed on the top tightly enough.

My back tooth had an abcess. Gum was throbbing. Too ill to go out to dentist. Arms hurt and ached. All I needed was rest. Instead, with burning arms and shoulders, I had to haul off each heavily tucked-in layer and hang it all on doors to dry. Even the top sheet and feather duvet was wet - right through down to the mattress protector. The heaviest to lift and hang was the duck down topper and king size duvet.

Ophelia sat in the hallway. And followed me from room to room. Trying to figure out what was going on. Bedtime routine was usually a tranquil affair. Thankfully there was a bed made up in the guest room. Slept badly. Ophelia was in and out. Wondering where she should sleep. She usually sleeps in the soft chair near my big bed. Last night she slept on the couch. This morning she awoke by my feet in the guest bed. It'll take days for the two feather duvets to dry out. I'll have to wait until Tuesday for my home helper to remake everything. I miss my great bed. Roll on Tuesday.
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Roll on Tuesday

Just had a phone call from a super friend who is visiting me here on Tuesday afternoon. She's very intelligent and educated, has a cheery disposition and is a wonderful conversationalist - well travelled, has a wonderful husband and children and a beautiful home. I love to hear her talk. She's so engaging, enthusiastic, creative and artistic. Could listen to her for hours. Down to earth and worldly and can talk about anything. A great laugh too. Roll on Tuesday.

Last night I was reading famous Last Words and The Blog of Death. Noticed the causes of death. Cancer is still high up there. Surprised at the number suicides. It makes for sobering reading. I was 51 on Tuesday. Some of those listed in the obits were much younger. At a quick glance, mid 60's seems to be the age that many pop their clogs. Some others lived beyond 100. Makes one wonder what it is all about.

# posted by Ingrid J. Jones @ 4/24/2004
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