Not really... but...

[neonlyte]

Did you ever think of taking your own life?

Hey... no replies required. This MY thread

I've had a really good week, almost pain free and I've done a lot of the things I needed to get done. But it doesn't really take much to bring me down. Despite posts elsewhere, that is not really the problem. It's piss taking... not of Litizens, but of me. Like a reminder that it'll never be easy.

Despite my best endeavours, I'm losing my memory. The stupidity is I can remember things I thought I'd forgotten. I can re-call instances from my childhood that I've never previously remembered... but I can't remember what I did yesterday, or even this morning. I forget to turn things on, and forget to turn them off. I went out yesterday three times to do the same thing and each time I forgot what I was supposed to be doing, buying some things, and not others, paying some bills and not others. And now I can't find my passport. I put it somewhere safe, and I've forgotten where. It'll turn up. It always does.

I need to record things while I think of them. I've started blogs for just such a purpose, but can't remember the passwords. So.. I'll write them here to remind me, when I get better, of what a sanctimonious and self-serving prick I've been.

First question to self: are the corks really getting longer in the bottles, or is my strength failing?

I have a preoccupation with the past. It is healthy in so much that it occupies my mind, and demands a discipline if I want to apply knowledge to writing. I have no problem with that... but I do have a preoccupation with the preoccupation.

'Mind Games': just as the mistakes of the fathers are visited on the son, so the son inherits the propensity to make the same mistakes. So just what do we learn from history?

Ok... I'm double dosing Citalopram. It's taken the best part of an hour to 'kick-in'.

Later. NO replies necessary... believe me, it safer for me to let off steam here.

Will.

 

[epiphany65]

One of the side-effects of Citalopram is memory loss. I'm sure it's cold comfort to you to know it could be this rather than the onset of senility, but if you haven't, you might want to mention it to your doctor. Maybe s/he could adjust your dosage:
http://www.netdoctor.co.uk/medicines/100000520.html

Take care.

 

[cloudy]

I think most sane people have had the thought of ending it all cross their minds at least once or twice in their lives.

The difference is that we don't act on it.

You're very loved, you know...memory loss or not.

 

[damppanties]

You're very loved, you know...memory loss or not.

Yes. And lusted after a bit too.

 

[Selena_Kitt]

If it's any consolation, I can't remember anything either.

 

[rgraham666]

*HUGS* will. Been there myself.

 

[Liar]

No replies nessecary perhaps. But I'm gonna say that it was a fascinating post. Thanks for sharing your letting-off-steam.

 

[TheeGoatPig]

I had a gun to my head in my teens one time. I obviously didn't do it. I don't think about it so much anymore.

 

[neonlyte]

Nothing is for nothing. Every moment has its place... even as it grows difficult to see reason in our surroundings.

There is a guy I know, a street person. His legs are deformed, his clothes are ragged, he stinks. I buy his bread most mornings when I'm in Portugal, and when I'm not here, I worry about how he's getting food. I've not seen him this week.

He once told me he was a photographer. Showed me the camera he kept in one of his carrier bags. 35mm Praktica, not a great camera, but it used to earn him a living. In the days when everyone was poor, he made a living photographing weddings.

He lost his living when ordinary people could afford cameras. He lost his living when everyday people decided they didn't need a deformed man taking pictures of one of the most important days of their life.

I don't know when or if he lost his family. I don't know when he lost his home. I don't know how he survives. I only know that he's lost. And winter is coming.

So I have this problem with light that may be real or imagined. It may be an excuse to keep me from going out, though it is, I guess, irrational to be frightened of sunlight, but I do like my meat bloody It's not so much frightening as the light makes my eyes hide. I prefer dark rooms, and I don't know why. My wife prefers light rooms, I can't think in light rooms. Once upon a time, I could manage several things simultaneously. The light didn't matter.

Question 2: What keeps me indoors?

When I first lived here, I'd spend half of each day outside, walking or driving. Now... I don't go out. Which is not quite true. But I don't go out. I can't walk and think. I can't drive and think, I'm not even supposed to drive any more. My capacity to concentrate is considered dangerous, though my licence has not yet been invoked.

I once met a woman driving a country lane. It was narrow, had high hedges to each side with no room to pass. We met bumper to bumper (fender to fender). She was older than me, then. She explained she couldn't reverse because she couldn't turn her head. So instead of her reversing 20 yards to where we might pass, I reversed 120 yards to where she could pass me.

The hospital where I go to monitor my sleeping disorder, is a twenty-five mile drive, the last part through narrow country lanes. When they told me I shouldn't drive any longer, I asked how I might get home.

Will

I'll mention the meds to the doc, next week, E.

and Cloudy, is good.

 

[cloudy]

But I don't go out. I can't walk and think.

My suggestion: get a dog...preferably one that will grow to be a big, goofy dog. They will make you go outside and enjoy yourself whether you want to or not, and the constant, unconditional love they offer is a balm to the soul.

 

[jomar]

That you think of others given what's going on with you, well...my respect for you grows even more.

Not that you asked.

 

[damppanties]

You need to write this story.

 

[LadyCibelle]

Reading you is very humbling, neon. I was all set for a bout of self-pity before I read you but now......now, I'll just be thankful for what I have and gloss over what I've lost.

Thank you for reminding me that my life isn't so bad after all.

 

[fieryjen]

Reading you is very humbling, neon. I was all set for a bout of self-pity before I read you but now......now, I'll just be thankful for what I have and gloss over what I've lost.

Thank you for reminding me that my life isn't so bad after all.

I felt a bit like that, too.

, Neon. I dunno what else to say right now.

 

[buxxxom]

tight hugs, neon. kisses too.

 

[starrkers]

 

[neonlyte]

Thank you for your support and encouragement.

I found my passport, it was, naturally enough, in my travel bag. A case of not looking properly.

The string theory of matter suggests parallel universes existing simultaneous across multi-spatial time. It is an attractive theory. I've not worn a watch for almost forty years. I have two wonderful silver pocket watches, one a Hunters Watch - it has a black enamelled relief of a hunting scene on the back, the other a plain cased watch with an attractive Mother-of Pearl and silver filigree face. The hue of the watch face continually changes depending upon how the light falls - but the time remains constant in each of it incarnations.

Three events trigged yesterdays crisis: I'd forgotten to take my morning Citalopram, the business with the car, and the prospect of a long day of travelling ahead.

By the time I'd sorted myself out, and perhaps wrongly taken a double-dose of C, I'd begun to mildly hallucinate. I find my hallucinations intriguing, they don't bother me because I don't view them as threatening. They do bother the doctors because they don't fit the empirical model - in the sense of the current use of the word as being verifiable by observation. It is damn difficult to verify when it is only me seeing things.

Hallucination Classes:
1) Mice and 'flying objects' - these are peripheral vision objects, though the 'mice' always give the impression of having run across the eye line left to right, or vice versa. The way the mind works, as far as I can recall, is to refresh the image in the immediate field of view, which is fairly obvious otherwise all sorts of problems would occur. I understand that the mind doesn't refresh periphery vision unless something changes at the edge of eyesight. That makes sense, an economy of resources with processing power where it is most effective. So... who is seeing my mice and my flying objects. They are not real. We both know they are imaginary, that they mean no harm, or at least, I can presume they mean no harm until I begin to look for and at them. It is a quandary... on the one hand I could just pretend I don't see them, on the other, recognising them lends them legitimacy.

2) Sounds:
Not things that go bump in the night - I find those really frightening. I had a growling teddy bear when I was small. I believe it was bigger than me. One night it toppled from where ever it had been resting to fall on me with its deep furry growl smothering me. Nightmares, it took a good woman to get me over my fear of furry places. Sometimes... I hear voices. This not an alert the authorities matter, the voices are not telling me to 'do something', there is no menace... and I suppose, by writing about my experiences, others might find a way to externalise some of the traumas they fear to tell others about. I am not exceptional... I just need to try to understand some of the changes visited upon me.

My voices are like being connected to a telephone exchange. I can hear hundreds of simultaneous conversations, most in languages I have no knowledge of. A few odd words are understood, there is no message, or instruction, or anyone talking to me; I'm there, in parallel listening to other peoples conversations. (The last time I wrote all this down and showed it to a neurologist, he waved his arms crying, 'too much information, too much information - it makes you think). I can't rationalise the sounds in the way that I can understand the peripheral vision, they don't threaten me, they do both me and are mercifully rare occurrences.

3) Ghosts and Visions: I see ghosts. I have done since I was little. End of story, some believe, others don't.

Visions are something different. My most recent occurs before I fall into sleep. Sleeping is not a problem for me. I can literally sleep anywhere, for short periods, which is one of the reasons driving is suspended, I can and do fall asleep at traffic lights. Given that I can instantly fall asleep, I am really intrigued why sometimes the process of going to sleep has to involve so many different people. It is like those movie scenes where the person wakes from the coma and all the faces are peering down. This isn't 'dream' where the imagination is creating visual scenes for a dream story, this is people watching me go to sleep... it wouldn't be so bad if I knew who they were. Again... it doesn't really bother me, except enough to make me want to record the events.

I started travelling at 6.00am. Twenty minute walk to the ferry, fifteen minutes into Lisbon, one stop on the metro, express train to Porto - two hours and fifty minutes, thirty-two minutes on the tramway, two and a half hour flight to Stansted, a forty-five minute coach journey to the university, and a ten minute taxi ride home. The cat was sat by the curb where the taxi driver dropped me off, waiting for me - how the f*** did he know?

Fourteen and half hour journey, I'm tired, sort of, but made the trip unscathed.

 

[neonlyte]

It has been a traumatic homecoming.

The news I'd been hoping to keep from my wife, was unfortunately revealed by my neurological consultant via a letter to my doctor, copied to my home address. The is one remaining test to be conducted on my nervous system, though the neurologist has gone out of his way to try to reassure me that I should not worry about it. The test is for Parkinsons, he stresses that he doesn't believe I show the early stage of the illness, but he wants to be absolutely certain. So I have to go into hospital sometime soon for a biopsy and some complicated scans involving nerve stimulation.

He believes I have a neurological condition of unknown definition commonly ascribed the title Progresive Recurring Chronic Fatigue Syndrome. he advised me, during my consultation at the beginning of the month, that no treatment exists to eradicate the illness, and we must switch from attempting to cure to making me as comfortable as possible within the confines of the illness. In essence, an agent is causing my neural pathways to transmit incomplete information. The effect can be instantaneous, which explains the sudden loss of leg control, the tremors that effect my hands on some days, but not others.

The illness may abate for days or weeks and will reassert itself spontaneously. At some point, it will reach my vital organs. My family Doctor received the letter yesterday and took the unusual step of telephoning me this morning to ensure I was 'comfortable' with the news.

It has been a tearful house today. My daughter took the day off work to lend moral support and we tried to work out what to do next. The answer is very little in the short term. We all agreed I need the remaining test to see whether or not I have Parkinsons, which whilst not treatable, is controllable. In the meantime, I have to continue with my current medication, increasing the anti-depressants, for the next two weeks and monitor the effect.

I'm probably the calmest of all the family members. Stress makes my condition much worse, so I've learned to stay calm, slightly fed up with answering the telephone all day and explaining the situation to our friends, but they mean well and I appreciate their concern.

I've the house to myself for a few hours, my wife is teaching at university first thing tomorrow and had to stay in university accommodation overnight to avoid the panic of me having to drive her tomorrow morning, then take a two hour train journey. I have a tribunal meeting tomorrow involving whether my Portuguese National Insurance contributions entitle me to free medical care and support in the UK, and wouldn't you know it, the pro-bono solicitor due to represent me, is unable to attend It should make for an entertaining afternoon.

Putting on my 'whinning old-man's' hat.

My trip yesterday went fine. About ten minutes out from the coach station on the final leg, I called for a cab, the driver arrived just after the coach pulled away. As I got in the cab, a young black guy asked if we were going to the station. Quite naturally, he thought he might share the cab.

The cab driver, white English late thirties, told him to 'piss off'. He then launched into a tirade about how 'the country' was being taken over by 'blacks' and immigrants. How they were all spongers living off the state, claiming benefits and had never done a days work in their lives. I was too tired to argue, I did think about getting out but decided my need to get home outweighed principle. It got ten-minutes of racist spiel for the sum of £10.10p (no tip). It wasn't until I got indoors that the full irony of the situation struck me. The cab came from our regular town cab company, their phone number plastered down the side. Our regular home cab company is owned by a Pakistani family. They have about thirty cabs in the town, and I've never seen one, or been in one, driven by anyone other than a Pakistani. Quite how I became singled out to get their only white racist driver may remain one of life's mysteries.

Will

ETA: The neurological illness was likely caused by the non-treatment of the Lyme Disease I contracted in 2005. Unfortunately, whilst a great deal is now known about Lyme, very little research has been done into the long term effect of un-treated Lyme. Largely, this is due to medical trial numbers being too small to apply rigid test criteria to an illness that both masquerades as other illnesses and has diverse wide ranging outcome. My solicitors have now filed legal proceedings against the consultant who originally failed to treat me, but it may be some time before a court hearing is set, and the outcome remains speculation. I am seeing my 'expert witness' neurological consultant on Friday so he can prepare a full and detailed report on my condition for the legal case.

 

[cantdog]

What a sad and unaccountable distance to have come. It makes a person wish they could eradicate history. My heartfelt sympathy, old man. Any constructive notions seem to have been ruled out in advance, but nonetheless, I'd love to make it all didn't happen.


Still, here you are, with a stellar daughter, and in lovely and interesting Portugal. May your time here among us remain uplifting and distracting enough so that you can have joy, when joy is available.

 

[neonlyte]

Can't sleep. I've got chest pains but I don't think it is from anything other than hauling my rucksack back to UK.

Contents: One shirt, one computer, mobile phone charger, note book, birthday present for daughter. The rest was food! Christmas supplies... not sure if I'll be going back this year. Don't think I'll be allowed to go by myself, not sure that I'd want to.

Sometimes, you need the space. And sometimes you need to free yourself from the concerned expressions... it sounds cruel, but it is not intended to inflict. I've avoided illness both in myself and in others. It is not something I've ever been able to deal with. Don't know why, other than illness in others makes me uncomfortable and I guess I perceive that others must be uncomfortable around illness, which is probably just concern that I misread.

I feel it would be infinitely easier to avoid everyone, but I know I'm not going to do that and can as easily see how that route is a downward spiral. Much to do, and much to think about. There is no easy solution other than to grind through, stay positive, and not allow the situation to dominate every waking moment. Need time to re-adjust, and time to understand how to work within certain boundaries.

I received this latest news on 2nd November. Oddly, my immediate reaction was one of relief. I had a name I could put to a condition and a consultant who admitted that after exhaustive tests (bar one) he didn't know what was wrong with me other than I could be grouped with others suffering a similar condition. Of course researching CFS scarcely sheds light on how this is going to be managed since my physical manifestations are unusual to say the least. Whether they will settle over time or become increasingly severe, as the consultant suggested, is a moot point. His concern, expressed very openly, is that none of the symptoms I've complained of since 2005 have abated. In most cases, there has been a deterioration, though in all cases, they are not as severe as when I first became aware of them.

It is also astonishingly easy to accept and live with the manifestation of smptom and make adjustment. For example, my face is unusually sensitive. It is painful to shave but not so painful that I can't shave and over time, I've adjusted thresholds to allow me to shave. But I only shave if I'm going out of the house. If I touch my face, it feels like it is covered in a 'spiders web', the sensation is other than where I am directly touching as if I were drawing on a web that is touching me above where my fingers touch. I've had that for three years, initially intermittently, now it is continuous.

I don't feel pain in my extremities, fingers and toes particularly. I cut my fingers and don't realise until I see blood. A couple of days later, they hurt like hell My toes get blackened. The doctors insist that I must be stubbing them and not feeling the pain. Last time it happened, I took time stamped photographs showing that my toes do indeed go black and that 48 hours later the blackness disappears, which it wouldn't do if it was actual bruising. So I have to go back to the Infectious Disease Consultant to obtain a vector for the specific Lyme variation to see if that can throw light on these odd events. One thing is for sure, I'm sufficiently medically 'interesting' to receive detailed attention from some the UK's top consultants, but only because it is baffling. My next three weeks will be pretty much taken up with tests, consultants and witness statements, all of which adds to the stress the family feels, and although it shouldn't do, it is very difficult to escape from the notion that I am a burden. I'm going to try to sleep.

Will

 

[Selena_Kitt]

Hugs, Will. Big, big HUGGGGS.

It's hard to believe that something so small (stupid %*$#*% tick!) could have started this painful journey... humbling and heartbreaking.

 

[Belegon]

You are no more a burden to them than to us, as I know you are aware. But it can be nice to hear it anyway...

You are loved and respected, Will. And your response to this only increases that.

I admire your reactions. I hope you will be sharing them with me for a very long time.

 

[christabelll]

Will, I can only wish you wellness.
And make a recommendation if you are interested. My aunt had similar problems for years...countless treatments etc. Nothing really worked until she went to an accupuncturist. Her hands and toes stopped turning black and she regained most of the sensation she had lost in her extremities. Almost twenty years ago now but she has been blackened fingers and toes free since then. Finding a master accupuncturist may be difficult where you are, I simply dont know of its availability there. But you might consider it.
Facial Neuralgia sucks! Man oh Man.... Steamy compresses with eucalyptus oil to the nape of the neck do seem to help. If it doesnt hurt perhaps you can try that?

Reading your story, makes me wonder if I was ever "cured" of the lymes disease I had 11 years ago. I've been reading up on it and it says to me no...
I really do hope and pray that you find relief. And I hope the cocky bastard who mis-treated you pays thoroughly for failure to do the right thing by you.
I wish you well. I wish you health. I wish you peace.

Bella

 

[Selena_Kitt]

Reading your story, makes me wonder if I was ever "cured" of the lymes disease I had 11 years ago. I've been reading up on it and it says to me no...

Ticks are scary. We moved into a rural area soon after Will started talking about this, and I was paranoid about ticks. We did a "tick check" on the kids every single night, and when we found them (inevitably, we did, especially on my son, who insisted on going in the "tall grass" when he wasn't supposed to) I always circled the bite (after we removed the tick, of course) with a permanent marker and watched it for a long time for the "bullseye" effect.

Lyme disease is just... evil.

 

[OhMissScarlett]

*hugs* Neon.
I've been keeping an eye on this thread. With fibromyalgia, I'm going down a very similar road. I feel myself slipping further and further each day. Some days I'm fine and others I am far from. But, the maddening feeling that I'm forgetting is always in the back of my head, even on the good days.

Today, it finally happened. I forgot to pack my son's lunch for school. It seems like such a very small thing, a thing that all mothers do every once in a while. But, to me, it is a recurring nightmare coming to pass. I've been crying since I got back from taking the lunch to him, thinking about the disappointed look on his little face. It's such a small thing, but it makes me worry about the next thing I'll forget. Will I leave the house and forget to take him with me? Will I be arrested for child endangerment?

I have to tell myself I will find a way to get better. I'm not going to stop looking. I don't care if I have to eat tree bark or starve myself. I will be better one day. I'm going to Google until my eyes fall out.