CHAOSTOCOSMOS

Friday, 21 May 2010

Paying dearly

image Why, oh why, when I had such a pleasant day out on Monday, have I had to pay so dearly since?

A friend picked me up in her car, so at least it wasn't a day when I  exhausted myself with the usual 1 mile route march to town and, we had a great day together.

Starting out late morning, I spent around an hour just sitting, while she did her exercise class. I moved from a chair, which was uncomfortable for my back and neck and, because I started getting pain in my legs and sat on the floor, resting my back against the wall to mitigate the problem.

We then went to the famous junk food emporium with the arches for lunch, which I thoroughly enjoyed - with chips and a coke - as a treat.

For a couple of hours in the afternoon, I sat and chatted at our fibromyalgia support group. I got up once to get a cup of tea. I ate one biscuit.

Such an outing shouldn't cause too much problem, should it?

Huh! No, a couple of hours is more than enough for me, so that by the time we left the fibro group I was so exhausted my balance was badly affected. (As I only had to walk across a tiny car park, I didn't bother with my walking stick.) So I managed to trip down a curb and jarred my knee, which has hurt since.

And just one treat: one meal's deviation - not even the whole day, because I had all my usual supplements, healthy breakfast and evening meal - from my usual mega-roughage plan is still causing utter havoc and it's now Friday.

Missing just one portion of my dynamite-strength fibre, on Tuesday, I couldn't go to the loo at all. (The same thing has happened if I've forgotten to put a sprinkling of linseeds on my salad, so I keep them out on view now.)

By Wednesday afternoon, I felt crap: much more lethargic than usual, even more nauseous than usual, even more bloated than usual - my stomach looked 9.5 months pregnant - and I could actually feel my ankles swelling up.

My pain levels have increased, particularly a pounding headache - so bad it's affecting my vision and has mostly kept my head firmly stuck to the pillow - that hasn't completely gone all week and pain in my joints, which could be swollen (although not visibly so) with the bloating and achyness in muscles that feels like I haven't eliminated my toxins from them - which basically, I haven't.

By late evening Wednesday, I finally managed to move something, but it was difficult (I joked that I'd thought I was going to need a midwife for it) and yet it was still not thorough. It took until the early hours of Friday morning to catch up on the missed day, but it's still not right and definitely not clear yet - another clue to which is pressure that's increasing my irritable bladder problem.

And I can certainly out fart any mega-methane producing farm animal again!

Personally, I think there has to be something seriously wrong that just one deviation from routine can cause a whole week's havoc and constipation this severe and, this is something I plan to discuss with my GP.

Saturday, 15 May 2010

Life on hold

image Thursday afternoon, I went out - to a meeting of my pain support group - and, once more, had a disturbed night and very little sleep afterwards.

The pain in my neck, which becomes acute after having to hold my own head up for an hour or so, plus the pain in my legs, which likewise is always triggered if I have to spend any time in an upright position, even sitting, had kept waking me.

Friday morning, I woke with the sore throat, feverish headache, sore muscles and general flu-like malaise that always follows any outing. Was only conscious for around 3 hours before I began struggling to keep awake, my eyes gritty, tired and having trouble focusing. As I couldn't manage to do anything - I couldn't even sit up - I lay down to watch TV and promptly fell asleep.

Not that I felt any better when I woke up, nor the next day.

Is this a flare or a particularly bad time?

Nope, this is just normal for me now.

Last week on Thursday, I dragged myself out - not very far: 500 yards maybe - to vote and walking back I felt so exhausted, in pain and ill I really wasn't certain that I'd be able to make it. Got home, collapsed in a heap and went to sleep.

On the Friday, I had a medical appointment, which required me to walk over a mile to get there. Doing so was a torture of pain and exhaustion and when I arrived it took a good half hour (I was early) of resting, drinking copious cups of water to cool down from the hot flush that had me overheating, sweating, with my head pounding and feeling so nauseous I really didn't think I was going to get through the interview without puking or passing out.

That pretty much put me out of action for the entire weekend.

Even earlier in the week, I wasn't sure I'd be up to another outing on Thursday and, to be honest, if it hadn't been for the fact that this is only a once a month date and I'd missed the previous month, I probably wouldn't have gone.

And this is still simplifying and glossing over 1001 other symptoms that I just feel too ill to take the time to describe fully - amongst them dizziness, lightheadedness, unsteadiness, trembling, not to mention stomach pains and another recent battle with the constant constipation, despite my vegan wholegrain over 5-a-day plus psyllium husk supplement roughage regime.

Today I have pain in my back and my chest again in addition to the nausea and flu-like symptoms. I've also been invited to a charity open day - a charity that helps me, so I feel duty bound to make an effort - but once more I really don't feel up to going out. Or, to put it another way, if I do push myself to go, I'm not sure I'll be able to manage my next outing to the fibromyalgia group on Monday, which will also be beneficial and that I've also missed for several months.

Basically, more than one outing a week is too many.

This is something I proved last year when I did a course that was supposed to teach me how to deal with my chronic illness and still had to go to doctors' appointments during the same 6 week period.

It took me months to recover from that and my tolerance certainly hasn't got any better since. And, while my pain levels rise to above excruciating if I get cold in winter, the warmer it gets in the UK - with the humidity remaining up in the 80% and above bracket most of the time - the more sick I feel.

I just live in hope that I might return to more manageable symptoms in a warmer, drier environment one day. In the meantime, my life is literally on hold, but unless you've actually felt this yourself, I'm not sure how I can explain adequately just how desperately unbearable this feeling is.

Saturday, 8 May 2010

The Woman I Am

image That Chaka Khan's voice is one powerful instrument, will be apparent to anyone who has heard her more familiar numbers, such as "I'm Every Woman" or the legendary soul record "Ain't Nobody".

Indeed, the latter had remained my all time favorite for years, until I heard the less familiar "The Woman I Am" from her 1992 album of the same name.

The song was written by Brenda Russell, Chaka Khan and Dyan Cannon. I don't have the CD case to hand, but the production, handled on this album by Marcus Miller, Arif Mardin and the late Wayne Braithwaite, and particularly on this song, is so rich and crisp. I also wish I could tell you who is on drums too, because it's a stunning purposeful performance that adds to the urgency and feeling.

But, of course, the highlight is how Khan's voice meshes with the saxophone as two perfectly matched instruments. For me, hers reaches somewhere that other voices just fail to reach. This particular song also holds a special place for me, as it was released the same year that I moved to the Canary Islands.

"I'll be the woman I am

Now I don't have to hide

All that I feel inside."

... spoke to me directly and was important to me then.

Now that I'm no longer in an environment that suits me or allows me to grow as a person, it's one hell of a lot more important now than it was even then.

Some folk have called me brave for moving to another country alone - I would counter that this could also be seen as foolish - but if I ever doubted, I did also have help and encouragement from Khan belting out lines like, "I had to find out in my own way". And that I certainly did (for better or worse)!

Listening to the song now is a bittersweet experience - as so many things have become for me - that brings back the pleasant memories, at the same time as reminding me of all I've lost with such an unbearable brutality that it crushes my very soul. It would be wrong to withdraw to avoid these stimuli, but at the same time, I have moments like these every day, where I feel unable to deal with the feelings they bring with them and that my brain will explode from the hurt.

Somehow I have to maintain hope that I will find my own way again one day.

The Woman I Am

Hey sister
I never knew which way to go
Everybody had an answer
So I said
Go lecture someone, go lecture someone

I could feel it in my heart babe
I couldn't scream, I couldn't shout
I had to find out in my own way
Ran into someone - ran into someone

I'll be the woman I am
Now I don't have to hide
All that I feel inside
I'll be the woman I am
Just had to let it show
Had nowhere else to go

I had to learn to trust myself
I had to learn just when to say no
Always trying to please someone else
I had to let go, I had to let go

The world is filled of many wonders
I had to look to heaven for my own
I saw the star that I was under
Lord lead me back home, lead me back home

I'll be the woman I am
Now I don't have to hide
All that I feel inside
I'll be the woman I am
Just had to let it show
Had nowhere else to go

I can look at myself and I'm not afraid
I have finally learned how to love
I can feel everything that I've never felt
And I'm sure now that I've always known

Photo: Dwight McCann / Chumash Casino Resort / www.DwightMcCann.com

Wednesday, 5 May 2010

Un Reflejo del Cinco de Mayo

Un Reflejo del Cinco de Mayo 

This is Balu and lemmie tell ya, it's most apt for this little monkey to have his head in the clouds - I like the fluffy cloud blending into his fluffy ear - for the "24 Hours of Flickr" group - a day-long global photo project.

Tuesday, 4 May 2010

Temple of Olympian Zeus

Temple of Olympian Zeus

Hadrian's Gate
Cats at the Temple of Olympian Zeus

It wasn't long ago that, by purely happy accident, I came across a video of Syros that caused me to recall my visit to Greece in 1985. Yesterday, also serendipitously, I came across a post with some beautiful photos of Hadrians Gate and the Temple of Olympian Zeus at Costas Tzagarakis' Nature Digital. Once more, I remember walking around the Temple of Olympian Zeus when I was in Athens in 1985. I got a quick shot of Hadrian's Gate from across the road, but what I remembered most were the 30 or so temple cats. Do you think Greece is calling me back or something?

Total Lack of Empathy

As I mentioned in a tweet earlier, last night I had to lie down because I felt so ill. I'd had a couple of nights lighter on sleep than normal and, as a result, my eyes were even more sore and weepy than usual. I tried to watch TV, but even that proved too much for me, so, despite having had an afternoon nap too, by 8 p.m., I couldn't even sit up because I felt lightheaded, nauseous, hot and cold, downright weird and almost like drunk and needing to cling onto the floor.

So I lay down and went to sleep. I slept, more or less, right through 12 hours, until 8 a.m. this morning, when the cats wanted breakfast.

I forced myself out of bed, because I needed to the loo mostly, to feed them and get my own breakfast. Even though I didn't really want to eat, I knew hunger would make the symptoms worse. Besides, I've had 15+ years practice at forcing food down me, even when I feel dreadfully nauseous. Most people wouldn't.

I did this as quickly as possible, so I could get back to bed, because I feel absolutely crap.

To add to the feelings of general malaise and unbelievably awful level of nausea, today I'm shaking like someone who's had too much caffeine (I haven't), I ache everywhere, I feel like I have the flu (I don't), I have a feverish headache and a strange feeling in my back that I get when I have a fever too.

I can't even sit up in bed. I don't even have the strength to support my own head. I need the light in the room to be relatively dim and the only way I can keep the desire to throw up down to just bearable, is to not move. Any stimulus, including noise, makes it worse, but I'm trying to keep myself amused with the computer - with simple things - just so I can keep awake and sane.

All I wanted to do and, indeed, all I can do is to lie as still as possible.

So, my mother didn't like it because I did not respond enthusiastically to her as she was whittering on about something that had absolutely no relevance to me whatsoever. So she grunted, impatiently - because she thinks I'm rude and wrong for not being interested - and storms off in a huff and slams the door loudly, as though she's been affronted. It's not the first time, by far.

She knows what I have wrong with me. I've given her enough literature that, by now, she must have a fair idea of the general symptoms. She certainly knows that my symptoms NEVER go away, but can get worse. It doesn't even occur to her that I might be feeling too ill to be interested. She never thinks to ask.

Narcissists and psychopaths lack empathy.

Saturday, 1 May 2010

Fibromyalgia makes your eyes go funny

image "Everything is slightly blurred, sort of misty, as if you are looking through a mild fog. The symptoms started slowly and at first weren't there all the time, it would be blurry one day and then it would go for a few days, but now it is a permanent thing and I simply can't focus clearly. I also have these terrible dry eyes, and wake up in the morning feeling as though my eyes are full of sand, stuck together and gritty." [Source]

My right eye is often sore and gritty and gives me a constant "tick", as I involuntarily blink my eye, over and over, in hopes of clearing whatever it is that's irritating it. Of course, nothing is, so it can't be cleared either.

My left eye, on the other hand, often weeps copiously for no good reason.

All of these symptoms come and go and wax and wane in severity, on their own schedule, but they've been going on for years. Any exertion will make them worse to the point that they badly interfere with my vision.

Sometimes it's headaches or light sensitivity that cause disturbances. Sometimes I can only read for about 30 minutes. Sometimes it's so bad I can't even look at moving TV images. Even just the scrolling movement of a web page can cause me to become dizzy and nauseous, so I can't even skim read, let alone pay proper attention (if the fibro fog lets me take in new information.)

Years ago I became almost completely night blind and long before I stopped driving all together, I stopped driving at night, because I just could not see where I was going well enough to keep up with the speed of the traffic and, oncoming lights would totally blind me so I'd have to slow or stop.

At my last eye exam, I "failed" at the peripheral vision test and trying to follow the random dots, gave me a headache, made me feel dizzy and nauseous.

I also have permanent floaters and black spots in my vision.

Glasses are seldom comfortable and can give me a headache and, my prescription has been changing very rapidly in the last few years. I can't afford optician's prices, but I'm now on the strongest of cheap reading glasses.

Other times, my eyesight just goes blurred and stays that way for as long as it wants. Glasses make no difference. Sometimes I can make out shapes of words and images I know, but I won't be able to read or make out new things.

Alex also lists similar symptoms as a result of her pain medication for ME/CFS in, Blurred vision. It's not fun. In my case, this has been happening for years and certainly when I wasn't taking any medication, so it's not something over which I have any control, which makes this symptom one of the most frightening.

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