Will be online until I go to bed tonight, having said that just got up from a nap after taking my first brief walk outdoors after a week in bed. Knocked me out, think my theatre group is going to be without me tonight. At least am moving again.
Thanks for the posts and messages. Yes I am rethinking all the time as to why I am shutting the door on my sole avenue of support. The fact is this site, and this forum, has just now become too much of an escape for me. For the hours I spend trawling through forums picking up and responding to a post here and there, writing in my journal, posting questions, reading other posts and replies - this is all time away from the pressing needs of my current situation. I need to be spending this time contacting the right legal people, advocacy agencies, even doing the essential exercises for my legs and eyes. But instead I am here, until I get too tired to carry on and then sleep, only to come straight back here whenever I am home. I need to break away from this, and if I log out and can't remember how to log back in that will take me away from here for a while.
Healthwise the next few weeks and months are crucial, it may be the turning point regarding reaching a diagnosis, or it may be the point where I have had the final test, the final opinion and there too feel I have had enough. Have another MRI tomorrow, also seems I maybe being referred onto a neurosurgeon who will decide if I fall into the very rare category where back surgery is needed, have the eye investigations this week, and another meeting with my neurologist in a few months. With the rapid development of old and new symptoms either this is drawing towards a crisis point where a diagnosis becomes obvious, or I will have to adapt to being disabled and being undiagnosed, but hopefully not unbelieved. The neurologist knows I would rather face the difficult diagnosis of needing major surgery and a possibilty of treatment, than being left with nothing, so is being very cautious about raising my expectations that the neurosurgeon, a professor in his field, will find anything.
In all other areas of my life there are major problems, which I can no longer run away from. Seems somehow everything is piling in at once, may not be a personal thing, life in the UK has become a bit like communist Russia these days, with all aspects of our lives now being shared freely between various agencies. This is the second time I have been called in for questioning over financial issues. I am not doing anything wrong, just once your name pops up on their system you are marked and harrasssed. To turn up to the meeting without a legal representative will make it easy for them to do as they please - have just a few days to find someone. Then there is the constant problems with the groundspeople running this estate, which has left me dragging the fight unsuccessfully through the local council and my whole quality of life becoming unlivable. Don't feel this is my own home any more. I have no money to move. Plus there is the issue with the gp from six months back who has tried to destroy my reputation. Reacting spitefully to my questioning his integritiy, he could anhiliate a person with one phonecall, and the primary care trust will not bother to follow up the protests and absolute evidence of the patient. Any time I am in need of emergency or even regular medical help I am aware that his malicious gossip may have made its way onto their system. If this is not removed I need to get legal help, but with no money to pay anyone, few if any solicitors will take on the medical profession. It may be because of the actions of this man this perhaps impending diagnosis, which may be crucial regarding my future capacity to walk, would never have been picked up on. The first neurologist I saw, who got his information from a consultant who had just spoken to this malicious gp, dismissed me entirely. This outflow of malicious gossip has to somehow be stopped, I have all the evidence to enable this, just can't get the relevant attention.
I have more to deal with right now than I can cope with, and cannot spend my days and nights losing myself in an internet forum. The support is here, and honestly is nowhere else, but it has become my drug of addiction. I always thought of myself as a non-addictive personality, hence my lack of concern over so many years of using narcotics and morphine and valium, they have only ever been painkillers to me, at no time recreational drugs of addiction, but on this forum I have become addicted - seems I am not as in control as I thought.
Myabe when the diagnoses are either made or thrown out, and other areas of my life lighten up, if ever, I'll come back. Some of you know how to contact me, and I will always be pleased to know how you are getting on. If you are interested get in touch and I'll let you know any news on my investigation results. The temptation to stay is very strong, but after a month being in bed ill and serious issues needing just piling up needing to be dealt with now I have to prioritise these. It would be so much easier, and more comforting, to just stay here, and forget all my problems. But they are there, and there is no-one else to deal with them. I am entering hopefully into a somewhat healthier state now, where I can start going out and sorting out my life.
Anybody wants to chat to me further I'll be around for the rest of the evening, about 6pm here right now.
Momzilla, I didn't mean to scare you and I'm sorry if I have blown too much your way. You know what I mean.
I am not right mentally at the moment, so take all my comments in this light. Once I start getting on top of things I will be back in control.
Thanks again.
You have been a source of comfort for some of us and it is sad to hear you have decided to leave! Perhaps a sabbatical might help but keep the lines of communication open...we will be here for you as well. Best of luck and I hope you find what you are looking for!
Rena
I am so surprised you would willing chose to close the door on the one place you said you had found some support and understanding. I find this really regrettable, but people need to follow their hearts. You say you need to do this on your own, but you have no personal support and you know how precious support is. So why "log-out?"
If you decide to do this then remember you can always come back with another name and password. More than one of us has had to do this when we couldn't remember our log-in data. (Us???)
You have become such a nice source of words and thoughts for others, you will be missed. But, do what you feel you need to do.
Best wishes,
Quix
Sometimes we all need a break from the Forum. I think you will soon find that you really want to keep in touch with the Forum. It seems to be an addiction if you are anything like me. If you DO log out, you can retrieve your password through MedHelp. Not to worry.
I don't want you to go, but I support you in anything you decide for yourself. At a time in your life where I think you DO need friends, this in my mind is NOT a good time to take you leave. This Forum is about more than MS, it's about our friends and ALL aspects of our lives. This is the time that you need to lean on all of us.
Please re-think your decision...but whatever you decide I am behind you.
Much Love,
Heather
I am hoping you will feel better soon!!!!! And Remember that I am here if you need to talk!!!
Friends,
~Santana~
I will truly miss you as you have been a great support. I would like to say that leaning on us is what we are here for. I understand if you need to move on. Good luck with the things you are dealing with. I hope things improve. Enjoy every minute of your life and take care.
Tahiri
I'm sad to see you go, and if it is any consolation, I think you've got a lot on your plate, but you know "exactly" what is there. I mean, this message is sad to us, but you've written your feelings and thoughts to us so well, that I feel you really and truly understand what you are going through. I feel you are quite in control of your moves and thoughts right now, and what you want to do.
That is a good thing! Go if you must, but you are always welcome here. Leaning, propping, lending, we do it all here, and that is ok. No matter what place you are in, it's ok. Take good care of yourself, please, treat yourself well.
be well,
Shelly
Thank you for the