Some Teasey and totally useless

skezier

Not really sure about posting this..... Got to yell it somewhere where it wont be as invisible as I feel.

For a long time now I have had this feeling of being cut in half,.... it so bl**** hurts! Its endless, relentless and wont go away.

I thought the temp paralysis would be the worst it was going to do to me... that's hurts like hell in fact that's the theory on why I become paralysed.

I couldn't believe it could hurt more that that.... then came the cutting in half....Even though the pain kicks for days after the temp bit this cut in half thing doesn't understand the temp clause... I so hurt and I am so sick of it! Seriously sick of it!

They arranged to see a OT who specialises in backs.... they were going to make some contraption to help take the weight off the bits than are being squashed and damaged... please note the 'were going to' bit....

They cancelled it this morning... the rumo has decided he needs to see me and review it first......

He put me on palliative care so that's that! It took me years to get the wrist supports from him and the back and neck thing...... well today that help became a dream on as like as not.

I just want to yell I AM A HUMAN BEING!

I am nothing without my way of life..... they are all there is to keep me gong cus the NHS is just not helping ..... again!

They told me a while back I wasn't cost effective.

The ot thing wa my last resort for some help with the cutting in half. Now that gone.... They have no idea how there actions effect us do they?

They just give bits of hope and bang its all gone again.

Thankfully old age is unlikely cus of the good old donkey, even though he is now swamped in tails he doesn't own!

I am behind with pm's and emails and for that I am sorry as well as being so glad for you help even though its yet again. .I am so sick of the invissability cloak the NHS have put on me and your help with the text, pm's and emalis I so appriciate.

Ok that's the end of my poor me and petty ditty but sometimes life is just a struggle.... I know for all of us as well.

You know what I am angry and for me thats a new one......

Right I'm done. Cris

suzygirl

Oh Cris, I am so so sorry. I have been absent but had noticed you were quiet and was wonderiong what was up.

Gentle (((hugs)))and a massive foot stomp from me. I so wish I could do soemthing to help, your 'care' is seriously lacking. If I lived closer I would so be with you at your appts, yelling and demanding. So maybe, its good I don't :oops:

Could you call the OT and see if they can help anway?? Is the rheumy going to see you quickly?

Cris, I know loads will coem on and say just the right words for you. I can only send you buckets and buckets of magic comfort and pain free wishes.

Izzy is also stamping her feet, but that maybe for a sachet?? :roll:

Love and (((Hugs)))

P.s could the local mp not help? or a representastive of a local charity? Its shocking to be told you are not cxost effective, they don't say that to cancer patients :shock:

tillytop

Oh Cris I am so, so sorry and I don't really know what I can say, other than that you are NOT invisible to your forum friends and we do care about you hugely. In the absence of anything helpful to say, all I can do is to tell you that the deer is on his way to you with saddlebags full of the usual ((()))s, CDM and newly polished everlasting tea flask.

Thinking of you Cris, lots.

Love Tillyxxx

skezier

Hi Suzy,

I just want to say thank you and nice to see you I am just so down and swamped and tired my friend. One of the resons I gone quiet, also the cutting in half so hurts and I do get teasy :roll: Usually with my self....

Mind Haz may differ in that one

Again thank you and ((((( ))))) coming back to you with a sachet for Izzy

love and many thanks Cris xxx

Oh Tilly you as well my friend. I do feel gutted only because it was my last bit of hope.

I see the rumo in feb, must ring and found out when......

We will troll through the other stuff that has to take priority and hopefully in there somewhere there will be time for this cutting in half... Tilly it really does feel like I have a chainsaw going right through me.... the ribs actually......then it throws a knife through the spine its self with all that kicks off.....

I got so much I have to do and I know just how useless I have become..... its not going to stop and the realization has sent me down all caps off!

Sorry my friend I really am in self-pity mode! Hey my mother had that all her life.....She lived and relished her wallow pit.... maybe I am like her but I hate feeling stuck in the pit as well.....

Mind its nicer to feel useless and throw away than to feel the anger

I shall bed the deer down in the sheep shed....I hope their sing song doesn't disturb the wonderful sleep I get now a days

Will send him back tomorrow with the bags refilled and confiscate the owl box from her Ladyship..... (((((((( ))))))) and thank you so much for seeding I am real.

Hey where are my manners.... How are you doing flower? You too Suzy.. xxx

suzygirl

Cris, the delays alone must get you down. The wheels turn so slowly. Can you not call the rheumy to see why he wants to see you before the back 'contraption' is tried?? It seems slightly unreasonable to hold this up once again, when you have waited so long??

Anyway, nearly spring, so have you booked for OT to come out and help you?? They wont slip in mud now, just slip in frost!!! Maybe a good time to sort that out and give you something to aim for??

Can the gp up any pain meds for you?? Or can you tolerate a wee dram, its my secret med when it all gets too much. :oops:

frogmorton

Hi Cris

fantastic to see you posting even though l know this thread isn't so happy maybe lees teasy more sad and hacked off :x and who woudln't be?

I too was waiting for this appointment...l have a friend who has a sort of body brace thingy which keeps her bist from collapsing. She has had the rod in her spine for many years and now this has helped he a little. She does less than you because she is a wheelchair user.

l wonder how the OTs are feeeling having their expertise undermined like this??? :?

I know that the meds you are on for pain are pretty heavy duty and even they aren't cutting it atm. l wish l had some suggestions to help, but l feel totally let down too

Well February can't come soon enough now for you so some answers he had better give you this time and a constructive plan of action to make life bearable is all you are asking.

The hugest hugest hugs for you and l hope the draft l made did some good??? Even a weeny bit??? can double the strength???As you can see l have some backup tonight

Lots of love from all of us here especially Daisycat and me xxxxxxxxx

elnafinn

Aw, dear, dear Cris,

I know you have been hurting real bad but this latest news is the pits. I really do not know what to say but I am thinking of you. I have never had it anywhere near as tough as you have and my heart really does go out to you. You really are not asking for much are you, just some help and to have the promise of it and it being snatched away from under your feet must leave you totally numb.

Keep talking on here, even though we cannot really help, it is always reassuring to know that others care and we most certainly do, especially for someone as special as you,who is always there for everyone, even though your own suffering is so great.

Gentle hugs
Elna x

barbara12

Oh Cris my love...you have every right to feel self pity...what the hell are they playing at...I do sometime think if they where in the same boat...then they would fully understand and do everything poss...if that makes sense.
I just wish I could come and give you a big hug...a gentle one of course...maybe one day...heres some to be going on with ((((())) xxx

kellerman

Oh Cris,
I really don't know what to say either.
Waiting and waiting and then to be cancelled at the last minute.
Oh cris all I can send is ((((())))) and hope that something positive happens for you.
Love May

SheilaD

Aww Chris

Just wanted to send you some ((((((())))))))))'s back to you as you have always sent everyone else hugs to help make them feel better. As other have said I am so sorry for your disappointment. Hope you get it sorted soon.

Love n hugs
SheilaD xx

valval

well have not been pm ing you because did not feel you could cope with any more at moment i wish could do something to help you they are so wrong to treat you like this and you have a right to proper treatment all i can offer is a shoulder if ever you need it and (((()))) to help you through try your local mp about time they did something to help you there must be others in your position you would be helping them as well have you phoned the help lines here they might have some advice val

tjt6768

oh bless ya hun.. I'm so sorry things are like that for you.. I dearly wish I could help.
I shall ask Ra to invent a contraption for you, out will be quicker than messing around with the OT.. He invented the steering wheel, the ironing board, deck chairs, jet engines, shears etc so I hope he can make something for you... I will tell him to add an automatic tea making add on. And some cotton wool covered arms for hugs when needed

Take care hun, you know where we are..

CJHunter

Cris this is so so cruel. How can can they do this to you, it is sooo unfair, I feel for you i really do

You are always supportive and dont you ever feel alone or invisible, cos u certainly are not.

Am sending you lots of ((((((((x))))))))

dont be alone xx

Turbogran

oh Chris you are never invisible to you friends on the forum and you have every right to be angry you have been treated badly they really dont understand what these delays do to us do they ? sending you a bucket of hugs (((((()))))) to keep you going.
hope they sort things out soon

dreamdaisy

I too have been quiet for fear of putting you under extra pressure you do not need. I knew things were rough for you my lovely but I did not realise how rough. You are indeed a human being (and one of the 'better sort' , I will never be as good and kind as you) and your abillity to deal with so much on such a regular basis is a double-edged sword, yes? You cope with much but as a result do not complain or kick up when you could, never mind should. I don't know what to say.

'Teasey' is fine, you have every right to be so and it is a very descriptive word but I won't have the 'totally useless'. Uh-uh, in no way is that applicable. I have to go and chef now, then clear up and catch up on meds (meth injection? What meth injection? Oh, THAT meth injection!) but I am thinking of you, very much. ((((((())))))) and more love than I have ever sent to anyone. DD

diamond

So sorry to hear you are being mucked about like this.All i can offer is plenty of gentle hugs,hope you feel a bit better soon.xxx

Poppyg1rl

Hey Cris my lovely,
You know I've been sending positivity and strength in bucket loads to you well, I'm sending even more now. I'll light another candle for you my friend, together with those above helping you will come through. Xxxx

janie68

Cris

I am so sorry that they are, in my eyes, treating you unfairly. Cost effective?? Are any of us? No,so why can't they sort out the thingy. (you know what I mean). The rheumo is talking out of his/her bottom.

I wish I could come down with our army of friends to your appt in Feb and get it sorted. Actually, thats a good idea! Hhmmmmm!

We are all here, I know we can't do that much, but listen, send you lots of hugs. I wish I could take away your pain and that awful pain of being cut in two.

You will get out of that pit, I think we all get in there from time to time don't we? No-one but us knows how low you can get with this bone shift, and you musn't feel embarrassed to do so. It's ok to step in!

I am and will be thinking of you my friend, I send you lots of hugs

Janie xx

suncatcher

Hi Cris i can feel your frustration. Pity you could not change your rumy he sounds a insensitive waste of space. They seen to look at us as costing them. They are there to help and care I wonder about the so called care profession sometimes. :x Some should seriously get a personality test done i don't think they would pass. Im sorry i am not posting much get too tired sometimes. take care from joanne

ironic

Hi Cris,
I am so upset for you, and angry at the way this was done. I know you will have been trying to pace yourself to get to this appointment and to have it snatched away like that is truly awful. Get the home visit sorted out as soon as you can as sometimes you can get things done by going through the backdoor so to speak. I got through the backdoor and because of one person I met I was finally put on the right track to get help.

Would it be any good ringing up the OT department and having a word with them? They might like to put some pressure on for this to go ahead anyway.

I am so sorry Cris, I am sending you loads of hugs and I am thinking of you.

Hugs as always,

I x

salamander

Hi Cris, you must be hopping mad. Give that rheumy a piece of your mind or I will on your behalf Outrageous to say you are not cost effective - oh yes you are! To us, for a start, you are worth every penny. What do they know about you life and what things mean to you? What do they know what you mean to us all? Nada!

Sending a very large hug.
Sal xxx

skezier

I just done a real answer.... submitted it and somehow got logged out and lost it...

like a fool I didn't copy it so its off into the ether with all the other disappeared messages...

I will get back to you tomorrow but just now I have hit the chainsaw with everything I can and am kinda floating about looking for missing messages

I just wanted to say THANK YOU ALL FROM THE BOTTOM OF MY HEART.

YOU REALLY ARE THE KINDEST PEOLE!

I am always amazed at the support you give, I genuinely don't deserve it and well you don;t know how much it helps to just not be alone.

You all have so much kicking at you and yet you come here and give me hugs, kindness and care...... I am so grateful to you all and also for the text, phone messages and calls. I can;t tel you how much it helps cus i am so sick of this endless pain.

I don't know why the rumo changed his mind.... hey maybe he will do a decent 'review' of the spine and neck? Flap flap oink there goes the 02.40 flying pig to Newquay!

Mind in fairness he is a really kind guy and he does help as much as fiances will let him... he doesn't like braces... took me 3 years I think to get the wrist ones.....

I would like to know why the spine and neck paralyze me, well i know why its pain but I would like to know how is may be the better way of wording it. They refer to the scan.... its 7 years old and totally irrelevant I think.... I did have a neck xray and the pain doc see's it with ultrasound xrays often but something is cutting me in half and its not a disc (got enough of them to know that pain) its not bone to bone (again got enough of that as well to know that pain)It probably irrelevant but I would like to know what the hell its up to.......

hey time the bailiffs came in and dragged it out eh?!

I must get the hamster ball, scruff the little shifts in there and file down their teeth cus they biting way to hard. Can i visualise that... not just now cus the tablets have given me a chunk of anxiety again..... Joanne you remember the last bout and the fear of a dead sheep? can you remember how we stopped it? Mid this time the sheep are home so the anxiety has become more bizarre than ever....

I don;t thin I should tell you all cus the men in white coats really would come and see me, its that bizarre but was triggered by a horrendous attack on a horse not far from where the sheep used to be at tack.... hey imagine how bad it would be if they were still there!

Anxiety...... Another side effect eh?!

See teasey as hell..... I tell people pain isn't a good companion and you know what its cus I know.

Will get back to you properly tomorrow and thank you all so much, I really have done a big melt down today... thats contraption, gibbet or not was the only hope I had left...... Still it will soon be march... going up country for a week Here how far do you think the invisible umbilical cord between me and the Right Honorable Lady Wishtiria Ithink-Yuwill-Find- That's-mine will stretch

I have never left her for more than 24 hours before...... :shock: Be good though and something to look forward to. Back along we talked about a forum mascot... and well 2 is a bad number and I need a tame one to balance Breagh's feralness.... I couldn't cope with 2 feral flock sheep and thats the only alternative.... dilemmas who would have em?!

Right the oxy's are actually helping so I might get 2 to 3 hours kip if I go now... Sorry I am so wished and pathetic and really down but without you lot I would also feel alone and thats hideous as sadly some of you know.

Love and ((((( ))))) and some of her Ladyships custard creams if you would like some and don't tell her Cris xxx

Oh forgot.. got to go for a special vision test Friday... if I fail I can be referred to the low vision unit (they think they can help with techniques to help the eyes work better.... also with special magnifiers that fit in your pocket and so forth....

A friend of mine (bless her she had the sobbing idiot on the phone and did not hang up) recons I have something linked to the dyslexia that makes the black on white jump up and down.... remind me Clare what it was called please.

I don't know if I want to pass or fail the test..... I said ti the blind association lady (you know they are so kind and care) I might be jumping the gun.....It was her idea mind and nothing to lose finding out except... well I know they are iffy inside the 4' zone out of that they are perfect but this big blob of fog in the center of my vision makes it hard inside the 4' zone.....

Wonder what test thy will do?

I promise to be a lighter shade of teasey after a bit of sleep... thats half the trouble I just hurt too much to sleep. Add in the junk and fears in my head... well you know what is like unfortunately.

There is one huge positive though.....cus of the bone shift I have met some amazing friends so its kind of kudos really...... Its a hell of a compensation really and you lot are so kind and so, so, so supportive and I really don;t know how I would struggle through this alone.

Thank you seems so inadequate but its the only word for it so times it by a million and know I really mean that.

Your brilliant, no other word for you.

julie47

aw dear cris

I am so very sorry that you are feeling this low but I can understand why all this building up of hope that the nhs give you , then, they take it all away.

I hope you managed to get a few hours sleep and that your appointment at the eye clinic goes well on friday.

Sending down a cloak with high visibiliy strips sewn in you wont be invisible then

Take good care my friend
Love & Hugs
Juliepf x

frogmorton

Hey Cris

hope you had a good night when you finally got to bed lass and today feels a bit brighter due to the support of your friends on here.

Glad you eyes are being looked at - yes there is some thing which Both my girls have and l have mentioned before to you which means letters can jump about. C is supposed to wear a blue filter and Lucy a pink one. I think you have a piece of yellow plastic to try over writing - that might do the trick. Hope teh eye test goes well for you and they can help.

A third one is definitely needed without a doubt as 2 is far too risky (sheep that is...just incase we have confused anyone!), an ickle baba one would be lovely, but l understand your worry that you might not be physically up to it.

I sentlast night to cordon off the wallow-pit and hoick you out of needs be.

as ever love and hugs

Toni et al. xxx

dreamdaisy

Scotopic sensitivity, that could be what CJ has told you about. That combined with tracking, focussing and convergence problems (they are to do with the muscles that move your eyes around and make 'em focus) is what makes print appear to move: for some it 'wobbles', others they see wavy lines of print, for some it goes in circles with the word/letter they are looking at the only steady point. Some even see 'flashes' like a bright light in letters such as b,d, e, g, p and q.

Morning my lovely, just a quick pop-in before I trog off to the docs. I hope you were able to manage something resembling sleep last night and that things don't appear to be quite so bleak this morning. ((((())))) and some more love. DD

barbara12

morning my love
Bless... you really did need to get all that out, hopefully by talking to us lot it will rid you of some of the anxiety....and dont say you dont deserve our support, you have got me through some hard times
You just keep talking to us... writing everything down is good therapy honest...sending you loads of good vibes that they will come up with something to help...hope you are getting that sleep...love and lots of slurps xxxx