Not really... but...

[Selena_Kitt]

*hugs* Neon.
I've been keeping an eye on this thread. With fibromyalgia, I'm going down a very similar road.

My SIL has it. She writes lists. Lot and lots of lists. Even for daily routine stuff.

Hugs.

 

[OhMissScarlett]

My SIL has it. She writes lists. Lot and lots of lists. Even for daily routine stuff.

Hugs.

I'm the queen of Post-It notes. I also set my cell phone to ring when it's time to do stuff, which is great, unless I forget why it's ringing.

 

[neonlyte]

Thank You, Guy's & Gal's

Selena... you are doing the right thing. Check your kids every time they return from playing in the fields.

Scarlett, I'm really sorry to hear of your problems. It is the small things that trigger the downward spiral. It is cruel... no matter how hard one tries, it is always the little things that tip the balance. Much love and wishes for the future.



Well... the Tribunal hearing was a disaster. It was adjourned, I was told to return with a lawyer... not an easy thing to achieve since none of the lawyers in our town will provide a Tribunal service. However, there is a London firm that might be able to help. The problem is whether my Portuguese Social Security payments enable me to secure assistance in the UK, they do (according to EU law) but it appears no one has previously trodden this path!

On Friday last week, I met the 'expert witness' who is preparing evidence for the Medical Negligence case. Nice guy, 67, facial and head hair wild! Presumably to make him look younger. He told me he has a friend, a female doctor, suffering with undiagnosed Lyme Disease, so I think he is sympathetic to my cause.

He told me he would be putting in the report that greater than 90% of doctors would have immediately prescribed a course of anti-biotics. He also said that his report would ste that immediate treatment would have resolved the the illness in more than 90% of cases. However, his medical tests included nerve conductivity testing. Not for the squeamish but this involves inserting 60cm fine needles into muscle and passing an electrical current through them, measuring the nerve conductivity. My legs showed less than 70% nerve conductivity... which explains the calf cramps and the falling down. I suppose it is good news in the sense that I now know what is causing the falls. On the other hand, having complained about leg cramps and falling down for three years, why has it taken my 'expert witness' to find the problem? With one set of figures, I have no idea of whether the situation is stable, declining or improving, so another few months need to go by before we understand if the nerves are in progressive decline.

Apart from that, I'm quietly going mad, not in the sense of madness, but in the sense of frustration that no step points toward an improvement in condition.

It is going to be a long haul... but I guess I already knew that.

Many thanks for all the good wishes, you've no idea how much it helps.


PS: On Saturday, we had a visit from friends with 5 yr-old twins. They called because the girls wanted to put on a show to cheer up Uncle Will. It brought tears to my eyes as they danced and sung songs that they had clearly spent some time practicing just to brighten my spirits.

On Sunday, we went to lunch with university made friends (more than 35 years). They never had children, and whether it was the sober occasion or the fact that we are all aging, 'S', told us why she had decided not to have children. When she was a child, her father used to take a strap to her. Not necessarily when she had done wrong, but when he felt like beating her, or her brother (my past sailing partner). It explained so much about a family relationship we had never really understood despite a closeness across many years. I can't imagine what she has suffered mentally over the years, shge adores her nephews (her brothers children) and takes care of her mother - who must have witnessed the beatings. My heart bleeds for her... and all who suffered the blighted years of childhood.

Will

 

[Chantilyvamp]

you are an amazing man neon and quite awe inspiring.

 

[neonlyte]

Thank You for the PM's, Peeps!

It has been a fairly horrendous week. I don't think the news about the drop in nerve sensitivity in my legs had sunk in when I last posted.

I experienced a period of very severe depression, which lifted, as if by magic, at around 10.00pm (UK) on Monday. This may have been the result of a visit from The Daughter proudly holding scan photos of our 7cm long grandchild. Everything looks well so we are looking forward to early June.

Currently, I'm suffering problems with vision in so much that my vision is impaired as if I am looking through a screen or filter. It occurs in the morning, rather than at any other time, and is a source of deep concern. The last thing I need is for my eyesight to fail!

My legs seem no better and no worse than before other than where I habitually lost balance to my right side, I am now also losing balance to my left side. As Ines commented, I'm moving around the house holding onto furniture and walls. These habits creep up on you so you don't notice, yourself, that you are doing them.

Mentally, I feel fine at the moment. I've been able to continue editing and my wonderful daughter has offered to be my 'agent' during her period of pregnancy leave - she means well, I don't think she realises just how much work a baby requires. Tentatively, we are exploring a possibility of buying a larger house where she, her husband and daughter can live, with me and Ines in a separate part of the house... she says she wants to ne nearby... but I think she just wants a babysitter on hand

Sorry if I've not kept up with threads... it doesn't mean that I am not thinking about most of you.


Will

 

[rgraham666]

Good to hear things are going fairly well, Will. Sending positive vibes your way.

 

[neonlyte]

Thanks, Rob. Long may we stay in touch.

 

[OhMissScarlett]

congrats on the soon to be grandbaby.

 

[English Lady]

*hugs* Will, I adore you, you know. Everytime I sit down at my computer I think of you.

I'm keeping you in my prayers and thoughts.

 

[Tricialen]

Hugs...it's very hard to accept that these things happen...I forget things too and it drives me crazy...

the advice to get a dog is excellent....I was in a very deep depression for two years but when I got my dogs my life really changed. They do give you unconditional love and a lot of it. They are great companions, you can tell them your deepest, darkest secrets and they will never tell anyone else!

And you will go outside with them...they(or just one he/she) will keep you busy and before you know it, life will be good again.

Prayers and good luck.

 

[Emerald_Dragon]

I can definately relate to the memory problems. Part of it is the depression itself and part of it is the meds (according to my doc). There are days I cant remember what I went to the store for, there are days I have to call the school because I cant remember whether the girls have an activity after school or not.

I would def. recomend getting a dog. Pets relieve stress for their families. You would need a breed that is good with children (with the baby comming! Congrats!) and that can be well trained. Excercise is good for depression and having a dog that needs to be walked everyday is good motivation. You might want to adopt an older dog rather than a puppy so you dont have the whole potty training thing.

I have found that keeping myself on a regular schedule helps with my memory.

My father in law ended up having a truamatic brain injury and a nervous breakdown. Their golden retriever has been good for both he and my mother in law. Piper was about 9 months when Mike had his car accident.

Pets also are great for laughs, they do some of the silliest stuff!

I hope that things stablize for you and start getting better.

Keep on keepin' on!

 

[neonlyte]

It's been a while

Thank you for the messages and kind support.

The last three weeks have been a little hectic. I've had a lumber puncture, hurt like hell, but no real problems revealed other than I've Lyme antibodies in my spinal fluid to indicate the extent of the infection.

Still waiting for notice of the Parkinsons Disease test, as far as I'm concerned, it can wait.

Been awarded the highest level of Disability Allowance in UK, which means we can get work done to the house as an when my condition deteriorates, it also allows us to swap our car for a specially equipped car that will take a wheelchair, though it hasn't quite come to that.

The independent medical witness on the Lyme Disease case has confirmed my original neurological consultant acted unethically in not treating me when he diagnosed the disease and stated that if I had been immediately treated, I would have had a better than 90% chance of full recovery. It's sort of bad news but does mean that I have an excellent case to proceed to trial.

And, I have another legal action pending over the handling of benefits by UK government. We have had a preliminary hearing that left the Judge astonished by the behaviour of the UK government department in refusing to allow my Social Security contributions, fully paid in Portugal since 2004, not to be counted when considering my entitlement to medical treatment & possible benefits in the UK. This is entirely against EU law, which overrides UK law on this matter. He indicated my Human Rights have been breached and it now appears I will get pro-bono legal services from a senior barrister to help fight this particular battle which is otherwise going to leave me with tens of thousands of pounds of medical bills. Just when you think you can deal with all the stress... up pops another teasing little problem.

For the time being, I'm a chair bound 'typist', though I'm losing control of some of the fingers of my left hand, just as well I'm only a two fingered typist Hey... i can do OK with just one

The last three months have seen a swift decline, I'm back to where I was at the surge of the infection in mid-2006 It's tough for family and friends. Had a long discussion with very dear friends last evening regarding their son's wedding on 29th December trying to work out the best way for me to attend... they've better things to be getting on with and one can't help feeling that I'm intruding upon a special day... of course I'm not and I'm extremely touched that they are bending over backwards to accommodate me... but.

On the good news front, daughter's 12 week pregnancy tests all came back 100% clear... the S.O. is in Lisbon attending a book launch that includes her work and she has just been transferred from MPhil to PhD - it's great news and I'm extremely proud of her. For years she has worked and striven to achieve milestones in her art practice and developed a framework of international events to assist other artists, this is for her, it marks merit for all her hard work in the eyes of her peers... and it would be just great to have a 'Doctor' in the family.

Take care all, especially EL and Husband, praying hard for your family.

 

[freshface]

I guess if you have to have the disability it's good news that you won't starve. You mention problems with typing. Have you looked into a program like Dragon Naturally Speaking? Typing was extremely painful for me when I got my Masters. This program allowed me to type my whole thesis with minimal hand involvement. It takes a quiet room and careful editing, but it does work when the alternative is not typing at all. Good luck with your diagnosis and court case.

 

[Guest]

Oh, hon.

I kept hoping, irrationally, I suppose, that with diagnosis and proof of your doctor's fuck-up that somehow your symptoms would ease.

At least legally, everything appears to be on your side. And yay for that judge you posted about, to get the information to get the most possible help.

I'll still keep hoping that things improve physically for you.

You know, I still smile, remembering your daughter's wedding pictures. And the cake you baked.

And mucho congratulations on the soon-to-be grampa thing.

 

[neonlyte]

Oh, hon.

I kept hoping, irrationally, I suppose, that with diagnosis and proof of your doctor's fuck-up that somehow your symptoms would ease.

At least legally, everything appears to be on your side. And yay for that judge you posted about, to get the information to get the most possible help.

I'll still keep hoping that things improve physically for you.

You know, I still smile, remembering your daughter's wedding pictures. And the cake you baked.

And mucho congratulations on the soon-to-be grampa thing.

Thanks, love. It's ok as long as I don't try to do anything

Hi freshface... don't thik we'vr been introduced. Nice to see you here. We have a auto type program, I think I'll leave it until I'm desperate... I find it quite infuriating

On The Dog Suggestion: We have a cat, he's occasionally sympathetic. Most of the time he bites. He has recently decided to revert to kitten-hood demanding 'fights' which usually consist of stealth attacks across the open carpet before springing at my legs. He is the most dog like cat I know in the sense that when we go for a walk (not so much these days ) he has to come along as well. These excursions usually ended with me or the SO carrying him home
I don't think he would like a dog in the house since he sits out front waiting for small ones to go past knowing they can't climb trees

 

[neonlyte]

Recognition... of sorts!

I received my 'Blue Badge' today

For the benefit of non-UK readers, a Blue Badge is a kind of status of disability. It is awarded when the UK authorities decide your disability is serious enough to warrant special parking and driving privileges.

For me, it marks a turning point between the possibility of recovery and a recognition, in medical terms, that I'm unlikely to get well, particularly as my doctor has confirmed I am unlikely to recover mobility during the next three years.

Hey Ho...

Other than that, the sun is shining and Christmas is round the corner... if I get a walking stick as a Christmas present...

 

[Guest]

I received my 'Blue Badge' today

For the benefit of non-UK readers, a Blue Badge is a kind of status of disability. It is awarded when the UK authorities decide your disability is serious enough to warrant special parking and driving privileges.

For me, it marks a turning point between the possibility of recovery and a recognition, in medical terms, that I'm unlikely to get well, particularly as my doctor has confirmed I am unlikely to recover mobility during the next three years.

Hey Ho...

Other than that, the sun is shining and Christmas is round the corner... if I get a walking stick as a Christmas present...

I hope you can take it as a gift, not as a sentence.

It just means it'll take longer.

Meanwhile, enjoy the better parking privileges.

And if you get a walking stick, go visit your original doctor and beat the shit out of him.

 

[rgraham666]

That's a bit of a bummer, Will.

I say you should pull a Douglas Bader and show the doctors they're full of it.

Sending lots of positive vibes your way.

 

[christabelll]

I would say congrats on the blue card - but I know its hard enough to deal with your conditions. But in a way its about freaking time eh?

I wish I could handle things as well as you are.

Many Many Blessings Will, you certainly deserve them.

 

[Techomancer]

Considered it in my teens, gun to my head and note written ready to go. What stopped me was a little internal conversation that went something like this:

"Enough people have wished me dead in the last two years, this should make them happy."
"WHAT! Screw that, if they want me dead they can come do it themselves!!!"

Silly now that I look back on it. I was a gymnast (free rings, parallel bars) in my early teens until a bad move on the rings and incompetent treatment destroyed my ankle. Determined to get back I essentially destroyed my other ankle by over stressing it to keep the pressure off the bad one. Unable to continue and watching my body degrade I fell into a depressive spiral that almost ended that night with a bang.

I've been on antidepressants a few times due to work related issues and I've had a few fleeting thoughts of suicide since then but since that night I've decided to fight as long as I can.

I know how hard it seems now, that's because it IS hard.
Keep swinging, if you can't win - make 'em respect your courage. That is a win in and of itself.

 

[neonlyte]

I think I'm likely to be away for a longish time...

I think I'm likely to be away for a longish time... not immediately, but I don't think I will be around past middle of February.

I've reached an end of what I'm capable of doing. The last few days have descended into something of a nightmare where I have brief cognitive periods before sinking into a rather violent anger that is almost a rage but is still controlled as long as I have friends or family near.

I, and the family - after a long discussion last night - recognise I am moving beyond control. In other words, I am being driven by a depressive state of helplessness, which, despite its clarity, is actually beyond my ability to control. Primary indicators are drinking - I can drink a bottle of wine whilst preparing dinner - and really vicious anger (of the type visited on RR a couple of days ago) but is far worse in 3D real life where the family believes I am actually seeking physical harm by challenging others.

I have written today asked my Doctor for psychological therapy, a treatment proposed last month by neurologist after telling me there was no 'going back'.
Currently... I'm hallucinating roughly 30% of the time, I'm being physically ill about 10% (vomiting, headaches) of the time, I don't sleep more than 20% of the night. I'm often awake around 3.00am surfing the internet. My sense of responsibility is failing to the point of thinking it may be OK to inflict damage upon others, and the anger and frustration of not being able to plan for tomorrow is almost more than I can bear.

I've toyed before with releasing my spirit, I think ultimately I lack the conviction to do it chiefly because the harm it would do to my family... but I think I need treatment before it gets to that stage. It is not that I don't know what I am doing... it is rather that I do know what I am doing and I don't want to pass to the next stage, which is oblivion and denial. The stress, and sense of helplessness, is not entirely my doing. I now have three legal actions pending, one against the neurologist, two against the UK government for refusing to allow my Portuguese Social Security contributions to be used to obtain benefits in the UK. I spend my days defending these actions, preparing documents for barristers, collating health reports, confronting each day the limits on my ability to respond and the extent to which my faith in 'fairness' is tested.

The very process of obtaining redress is almost designed to test an individual to the limit as if survival is the mark of value. I cannot walk without a walking stick or someone to hold me. I cannot bathe without someone to help me. I cannot even make a fucking cup of coffee without someone supervising me; yet... the UK authorities have decided 'I don't need assistance'. It is not that we need the money, it is a question of recognition of being placed in a situation which is not of your choosing, of someone making a mistake and at each refusal - because of cost - I feel undermined, less of a person, vengeful, resentful, angry.

We now have four medical opinions about my condition blaming the original neurologist for negligence, and yet, it is going to be fought through the law courts. It may take two, three, or four years to bring it to trial... and I really don't think I can survive that long. I actually wish it was over. I wish I didn't have to face the consternation in the eyes of my family and friends (it seems to have double since I got my walking stick). I really just want an end to it as much for their sakes as for mine.

Writing is about the only skill I have left. Whilst physically the declination is obvious, it has affected my ability to write less. The confusion that accompanies activity is very different - eg. one can tip coffee onto a tea bag once and accept it as a mistake, an accident. Doing it repeatedly is... a problem. Thus I can think but not act. I can visualise, but not respond. I can try without ever achieving...which kind of sounds a pitiful... self pitying state... would that it were so. of course I self-pity... but I'm not yet senile... I know the difference and recognise my daughters plea last evening that I get psychological help was not just for me, but because she fears for what I might be capable of doing to harm their child due in June. None of us believes I'm capable of harming a fly, and none of us believed I was capable of hurting people the way I have done this last three months.

Please... no replies... it is for my benefit to write this.

Beijinhos

Will

 

[impressive]

I love you, regardless of which path you choose -- or which path chooses you. All my strength is flowing your way.

 

[Guest]

Oh, Will.

Love and strength and hope to you.

 

[Nirvanadragones]

I know it may seem like mere words, but I love you, Will. I keep you in my thoughts, in my prayers. And I wish you Love and Light, to you and your family.

 

[MagicaPractica]

I know you said no replies, but they broke the rules first. I simply cannot refrain from telling you how much your words have meant to me in the past few years.