cycleclops I have read with great interest and admiration everything you have said on this thread. Please don't think that is flattery because I genuinely found myself agreeing with so much of what you had to say. On the other hand I thank you for your flattery and that of Sue's too!! BTW the photo was taken when I was 72 and I am deteriorating rather quickly!!
My position is as you have rightly observed one of quiet indecision. I know for certain that there is no cure for my condition and therefore further trips to my neurologist for some new wonder treatment/drug is a certain waste of time. I sit in his plush room and he smiles and tells me how much better I look than the last time he saw me. After 20 minutes small talk and pleading by me for a Sativex prescription (which he could give me if I was suffering from MS) or a “new” painkiller, I depart $300 worse off. I have spent a fortune on neuros, devices and supplements and for all their claims of cures and help, I remain in this ever worsening condition. I have now given up any hope of finding even the slightest help but I must emphasise this has not made me bitter. I may sound it but in truth you were correct to use the word angry and I do feel somewhat let down by “the system”.
I realise how negative this all sounds and I am truly sorry for that. However after 15 years of decline in which I have fought single handed to live my life as best I could, I hope I may be forgiven a little self sympathy. There is no way out of my situation except................ and I am trying hard not to think along those lines. I try every day to face life positively but after 2 or 3 hours of pain I begin to lose the plot – if you know what I mean. I then struggle through the rest of the day knowing that I will take perhaps an hour of trying to get to sleep then wake up on and off through the night until once again I swing two numb pain ridden feet and lower legs out of bed again. Now I am very well aware that many people in this world – some of them here – are in wheelchairs or bedridden and many more who suffer much more pain and disability than I. However I know a wheelchair beckons to me and I always said I would never let that happen. I said it in the early days when I read of PN sufferers in wheelchairs. I think we all know of the saying that there is always someone worse off than oneself. At the same time I think we all know such a premise doesn't help us one iota. We each have just one life and if it holds nothing more of value or worth to us then it can truly be said that life is not worth living or as you so eloquently phrased it – “If they can't control my pain and I can't eat normally, poop without major procedures, or stand up for very long without passing out...well, I will have my mind made up”. Quite obviously that does not mean one hurls oneself in front of the nearest bus! but certain thoughts along the lines that you have mentioned, such as not prolonging life unnecessarily must inevitably come to mind.
For pain spikes I occasionally take oxycodone 5 or 10mg but they make very little difference. The only request I may make of my GP is for a kidney test because I have been on Neurontin for so long. Not one of my doctors has ever considered such a test necessary. I also have an appointment to see my coronary consultant next Monday and I have to tell him that his latest suggested drugs have had the usual adverse effect on my PN pain, I therefore will not be taking them. I doubt he will wish to see me again.
Cyclelops, you mention dying while living and living while dying and I am definitely in the last group. I take every day as it comes which is usually bad but nevertheless I have to make it through, even though the “sword” hangs ever lower!! The recent revelations regarding my blocked arteries probably suggest where it will most likely fall first. Indeed I imagine most of us would prefer that scenario (i.e. a sudden outage) than a prolonged PN one accompanied by much suffering. I consider myself reasonably tough when it comes to pain but there is a limit both in degree and length of time. I may yet have to find out which is my Achilles heel. Oddly enough you mention your dreadful sounding road accident, well coincidentally I had an horrific one in May 2006 when another car swung into me at 70mph. My car was a mess and stuck in the fast lane but thank God I managed to extract myself without a scratch. However the not insubstantial shock element set my general health back even further. I will just mention here that the other driver disappeared and was found 6 weeks later. She said she was too scared to go to the police!! She was fined £50 and had 6 penalty points put on her licence and was back driving in 3 months. This was after she left an unknown number of people in my car possible dead or badly injured in the wreckage. Such is justice in this country. I digress……
The one thing that scares me rigid is the thought of going into hospital. I don’t have anyone who I can depend on even if I wished to – a desire I seem to think you share. My wife who doesn't live with me all the time is not capable of helping because of her condition (which is complex) so my word to her is “no ambulance”!! I am also thinking along the same lines as dahlek when the subject of “drawers” comes up!! My house is so full of stuff accumulated over 67 years – yes 67 years – that I dread the thought of what anyone will make of things. Setting fire to the house would be the best answer. However the timing of things would tend to be tricky!!
Another problem which I am sure many here are aware of is the act of being sedentary most of the time which in turn creates so many other problems. I didn’t even know I had angina because I never moved faster than a snail. One day I had to and discovered this pain in my chest. Constipation is an everyday event and as I have said, after my last colonoscopy the doctor “tended to agree” when I suggested there might be an autonomic connection because of my PN (which he was not at all interested in!!). Muscle wasting and almost total lethargy are further worries.
Quality of life is as you say a huge issue and of enormous importance but only to the individual concerned. The medical profession is hidebound with rules to sustain life at almost any cost. I can quote several examples I know of personally but won’t do so because they were traumatic and will likely upset others here. Suffice to say that I watched both my beloved parents die in a horrid fashion. I have refused any form of surgery – either for my heart, PN or anything else. My 74 year old body has had enough done to it over the early and middle years. I must say though that I don’t regret those operations because they gave me a pretty good life up to the time when I developed PN.
Yes cyclelops I agree, the future is now mostly in my hands. I decide – unless of course God or fate - (as you will) decides otherwise. You were also right to – as you say – lighten the mood.
We all have our own way of cheering ourselves up (and others too!!). Flattery is one way!! I love your phrase – paradoxical reaction!!
I won’t stop looking in the mirror for days now!! There is no one likely to accuse me of a Narcissus complex any more!!
I still have my silly sense of humour despite the foregoing preamble!!
One thing I have decided to do is enjoy my vices more. I mean chocolate, cream, biscuits (cookies), sweets (candies) and all such evils. I left my other vices behind some years ago!! BTW I enjoy reading, TV and of course internet researching. Guess my main research subject?
Bob – I was sorry to read of your sudden worsening pain especially after your long success with Lyrica. I do hope it soon rectifies itself. I also agree with all your other comments and I would never accuse you of rambling!!
I’ve done a fair bit of that here myself.
I guess it’s good to talk even when the sky is dark. I wonder who said that?
I would like to thank you all for your kind words and wish all those who have posted on this somewhat involved thread, much improved health.
Tony