help please!!

[tanyap]

Faye Im so sorry to hear about your cousin, I hope youre ok about it.

I hope physio goes ok for you today, are you doing home exercises every day?

I am still doing my exercises, 3 times a day, monday to friday - I take weekends off now. I also do a walk every day monday to friday and usually on a sunday id do something like go up the mountains for a bit of a hike.
I can still feel improvement week by week. Its less noticable but still happening.

[helsbels]

hi guys

tanya - i am so happy for you that after such a long hike you feel no suffering the next day. that is just wicked compared to how bad you used to be just walkng round house. gives me hope that there is light at end of tunnel !

when the doc phones me he always asks how im going and how tabs are working and i always tell him theres no difference. he then says we will up the dosage as it maybe just to weak for an effect. i did have to tell him tho that everytime he ups the dose i become ill for a couple of days. he said it can be normal as your body is getting used to it but it does mean your body is having an effect from it (if that makes sense) he said tho if the illness carrys on for longer than normal then to phone him asap as it means im having  side effects
i am really happy with this guy tho even tho he has pissed me off with giving me more tabs etc because it shows he does care about me and how fings r going as he is the only guy out of all ive seen that phones me regularly for an update etc. i now it may be only because of him wanting to increase the dosage etc but he could have just told me if no differnece after 2 weeks of being on 1 dose up it again by 100mg and do same after every 2 weeks but instead he phones and checks which i fink is nice. i fink mayb because he does this, this is why i am still taking the tabs as otherwise i would prob have just given up with them by now! so at least thats a good thing in a way even tho i was pissed of with the whole situtation.
he did say some ppl are different so some ppl feel difference straight away others take longer!

i am still on my other meds:
tramadol 200mg every 4 ish hours which ive been on nearly 2 years now. its quite weird actually as when i got my 1st 2 weeks of my gabapentin at the pharmacy actually in  the hospital when i saw gaspar (he is able to do a prescription there and then for 2 weeks worth of med instead of waiting for your gp to get the letter and then to do prescription which i fink all docs shud be able to) the pharmacist wanted to know wot else i was on n when i told him bout the tramadol and how often i took it he told me i was overdosing every day as you should be only taking it every 6 hrs and u should only have a max of 4 in 24hrs at that dosage! and yet nobody has ever told me that when ive told them wot im on and ive been on it since jan 07! how bad is that. i did try reducing it but it made pain worse so i have had to go back to the old way although i do try to wait as long i can between each 1!
i also take nortriptyline 20mg at night which been on since jan 08 when i had to come of amitriptyline due to bad side effects which i had been on for a year b4 this, although they are same thing just slightly dif ingredients aparently.

life is still same - cant do feck all byself, cant do much full stop coz i cant walk. i dont realy fink i have gotten much worse but certainly aint got better.
cant do anything with leg coz of the pain and the muscle is probably wasted now as i havnt done any physio since xmas last yr as aint got a pt since i wanted to be referred.

it doesnt lock as much any more mainly because i am so careful with how i get up etc because i dont want the excrutiating pain i get when it locks although it still does it every now and then. i still have the cruntching and grinding which i can feel in knee whenever i move my foot about or try to bend leg slightly.

i do have an occupational therapist which has helped with around house by giving me some equipment like frame round toilet, tall stool/seat in bathroom  so i can brush my teeth and wash face etc and seats for in bath so greg can get me out easier than if i was at bottom of bath. unfortunatly we dont have a shower or a shower tap (taps are wrong type to even put one of those shower contraptions that you put on taps, as it would prob be a little easier if i had shower as i could prob sit on higher stool therefore making things easier but because i only have bath the seat still has to be low enough to be under water. also i cant get a stair lift installed because of way stairs are plus she said they wont do any permanent fixtures because we dont know whether this is permanant!
greg and me r great, he is still being realy helpful etc but i do feel awful for him with having to help me all the time. it must be so hard for him as he would love to go out to work but because i cant do feck all he wouldnt be able to. i feel so horrible but he never lets on that i should feel awful and if i ever say it to him he just tells me not to be so stupid thats wot u do when u love someone u want to be there for them no matter wot. but it must be so hard on him to. i think the worst things out of everything is money because neither of us it working. that is the thing that we argue about and gets me so stressed.

me n greg always talk bout wot we wud do if i won lotto. i keep saying i would pack my bags and bugger of to see the best doc in the world no matter were he/she was. then i used to say to greg - if he/she is any gud i would then send someone to get u and faye and bring you'z ova to c them aswell!

i just wish it could happen lol


faye - i am glad that the sickness isnt as bad as it was. i cant fink of anything worse than being sick constantly as well as not being able to walk etc in a way it is probably worse than not being able to walk! must have been awful but im glad its better. r they doing anything about the cyst?
im glad i havent had such a reaction to the gabapentin as u did, i just hope i dont react like you did when u came of it. did they say the cyst was wot was making u so ill or was it because of the tabs?
how did physio go?
im so sorry to hear bout ur cousin, that must have been awful to find out something like that. its bad enough when they r ill but must be even worse when its sum1 elses fault for there death. i could never imagine how hard it would be.

i know its a kind a morbid story but i just wanted to tell u on how bad an accident must be for family etc.
a family round were my mate lives (it is a friend of her sisters but only because the family were fostering my mates sisters 2 kids, long story) so i didnt actually no them. we had really bad wind one day last week and aparently there son who was 26 (same age as me) had gone up a ladder at his mum and dads house (dont know why he would go up a ladder in that weather so must have been something that needed doing or sumthin dangerous if led, not sure) but while he was up the ladder he feel off and broke his neck so killed him instantly. ( i think the wind caught ladder and there must not have been any1 holding it) aparently now his father has had a nervous breakdown because of it because he feels its his fault etc
thats must be so awful to have something like that happen. just like what happened to your cousin. its so sad and awful. life is just so cruel!


i am hopefully going to be starting my swimming again nxt week as that made me feel a little bit beter in my self mainly because i think it was sumthing 4 me to do and i started to lose a bit of weight as well which was even better, i also went to sunbeds every week as well to make me feel betterl as i used to be so white i hated it but when we had the hot weather i got a lovly tan and wanted to keep it coz it made me feel better. i havnt been swimming since july due to the friend i went with had no one to look after kids when they finished work and there was no point taking kids as they cant swim so we wouldnt have been able to do wot we would normally do plus they are a nightmare as 1 has adhd and can be v naughty. but hopefully i can start feeling better in n myself again once i start back.

other than that my life is boring lol

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[helsbels]

omg i have just seen how long  that last post was.
sorry guys its likes reading a book coz its so long lol   
 


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[friendsfan]

it really was a shock when we heard, and they dont know who the driver is yet, just that its a rental car....you always think it never happens to anyone you know.. thanks for the condolenses.

Im just back from physio and they just seem obsessed with this weight-bearing issue, I keep getting told off, but Im trying my best and thats all I can do, when I do weight bear I dont trust it to carry me, I think this is part of the issue........its a case of mind over matter but my mind is apparently very strong...dont get me wrong pain is also a issue for weight bearing too.
Touching my knee is proving to be a problem too, its just mega hyper sensitive..
But on the lighter side when I was in there today, she was making me stand up and sit down, as I dont bend my knees when I do, and she about sat on me trying to get me to do this..its a habit i got into when I was in plaster and I just cant break it,  Took me ages to master and she wants to to get out of it now. It was so funny, she said who do you think is going to win this fight? and it was me. 1-0 
but she is saying my knee is improving, its just not noticable to the normal eye..ahhh well

Helen its fine about the post it gives us something to read, they say its the cyst making me ill, they was going to operate but its too dangerous, with it being on my spinal cord so they are just keeping a eye on it.
I really hope you dont react like I did.

Tanya my brother has just moved to ireland when I visit him, I'll go hiking too

[tanyap]

Hi Faye and Hels,
Hels - you know at first I was so disappointed for you that the doctors seemed to be doing nothing much but now after hearing about how he is ringing you every 2 weeks to check up etc, maybe he isnt so bad after all and at least you know that you are gonna have him keeping in touch and if the tablets dont do anything after 4 months you can start telling him that he needs to try something else. If I were you Id definitely keep onto him about there being something mechanical wrong too cos thats something that they will need to sort out.

Im really glad that Greg is so good minding you. My BF is seeing my physio now (he hurt his knees doing outdoor training stuff) and she was saying to him that he was very good to stick around during all my knee issues, he was the same as Greg saying thats just what you do for someone you love, but she said that a lot of times guys just bugger off if girls have ongoing problems cos they just cant handle it - so youve got a good one there!!!
Dont be feeling bad about it though - its not like its your fault, and as well if the shoe was on the other foot you would do it for him right? And its not forever, I know it seems bloody endless but at least there is a doctor taking an interest now and they will eventually figure it out. There IS light at the end of the tunnel!!! Its just the worlds longest, darkest tunnel!!!

Id definitely get all of us the best docs and physios if I won the lotto - weve been playing the euromillions in work, havent won anything yet though

I know money issues must be a big worry for you Hels, can you get any extra money from the social welfare or anything? Could Greg do any work from home? Its a big problem, but again, it is only a temporary thing. What did Greg work at before your knee problems started?

Faye, Are the doctors keeping a regular eye on your spinal cyst? (sryinx? - dunno how to spell that), do you have to go back much to see them?

Yeah they are gonna be totally obsessed with the weight bearing in physio, thats always a big big thing for them. Can you weight bear on it locked straight? Thats where to start, its gonna be so hard to get it weight bearing bent, but doing it dead straight will help. Even at home if you could just stand for like 30 seconds with it straight, putting weight over to that side a few times a day. The thing is, no matter how hard you try your body wont do it til its able to, so you have to just keep trying and itll come itself when its ready.
And keep touching your knee yourself the whole time, its the scarring and them cutting through nerves that makes it so sensitive, I had it too, I started just touching it lightly myself a few time a day, then moved up to massaging it lightly, then to using a soft towel to rub around it, then a hard towel to rub around it. It actually happens kinda quick if you keep at it, quicker than youd think, but its horrible having to do it, but if you push through the horribleness youll be able to do it. Dont just leave it cos it wont improve unless you keep prodding at it!!!

Faye where has your brother moved to in Ireland? Is he working over here? Itd be great if it was near enough to where I am, Id definitely meet up with you if you came to visit him. I could even bring you on an easy hike
xx

[friendsfan]

they are keeping a eye on the syrinx, not got to go back until march, unless any more problems arise.

I cant bear weight through my knee whilst its straight, its at a kinda angle, but we can get it straight now.
Touching it is just a no go area for me, i tolerate it in physio coz they hold my leg hostage whilst they touch it, I just cant do it. Im still in shorts most of the time coz i dont like the material pulling round my knee. eugh!!

[tanyap]

I didnt realise you were that sensitive - what about in bed - do the sheets drive it mad?

heres what you should try - get a feather duster and keep touching your knee with the feathers - it will help!
you have to make it not be so sensitive - it wont stop being sensitive unless you make it.

[friendsfan]

god yes the sheets do drive it mad..ive got to admit its not as bad as it was, but it still bad
I just havent got it in me to touch it, im quite finiky about these kind of issues

however ive walked 2 miles today, all weight bearing in a fashion, every step im thinking it will hold me up, it will. but I have absolutly no quad muscle there to stabalize it

[tanyap]

well done Faye!!!
My physio always says that with a healing body you have to 'fake it til you make it' - the brain will still recognise the signals that youre trying to use muscle and itll send off messages to grow new nerve fibres etc... so keep on walking - itll all come round!!!

[friendsfan]

Thats all Im doing is faking it, but my knee really isnt happy today about it, but it'll have to get over it.
Im now in deteremined mode after my physio telling me off, she said to me what would you of told your patients? So it made me stop and think about what i used to tell my patients.

By the way my brother has moved to coleraine, if thats any help

[tanyap]

just keep on faking - i faked for ages now its happening, i think ive been faking step downs for 3 years and only got the hang of it properly a couple of months ago.

youve really good determination considering its going on so long - i know its hard to stay motivated!!

im all sore cos i went back to my 3 mile a day walks on monday, i took two weeks off cos of sinus infection. my whole body is stiff and sore - not just my knee!!!

aw, coleraine is northern ireland, its a different country

its a long way away from where i am.

[friendsfan]

Thats a shame then tanya, that its so far away...

Ive not took any pain meds formy knee for a week, so im getting better in that respect...
in a way I regret having it done and not being any better yet, but I had to take the chance that It might work..

My walking is better now, not better than pre op but the best its been since

is your knee still improving?

[tanyap]

hi faye,
yes, that is a shame!!

its way too early for you to be regretting it anyway, you are only allowed make regretting decisions after 2 years
off pain meds is definite improvement!!!

my knee has been sore all weekend, it seems to go quiet for a few weeks then get sore for a bit, i am convincing myself that each time it gets sore its because ive reached a 'change', where its gotten strong enough to do new stuff but its achey cos its just not used to it. Then it gets used to it and creeps along with not much change for another few weeks.

[helsbels]

hi guys

how r u all doing?

hows the knee's getting on?

im  still same - gaspar (pain guy) has up'd my nerve blocklers again to 500mg 3 times day and they made me feel quite ill as they always seem to when i increase. he is phoning me nxt wk i think as he is going to increase again to 600mg. i mentioned to him last wk that they aint doing a fing and he sed he wants me up to 600mg and then if after that still no change he is gonna do something else but didnt say what when i asked. (he always seems to hear what he wants to hear and not what i say) like all docs!!! he isnt english either (although he speaks gud english his accent is strange n not from uk and is hard to understand him sometimes. or it may just be me and he is british lol

i have starting making things with sewing machine to give me something to do and it is helping to take my mind of the knee quite a bit. plus i get to sell things and make some money hopefully once i get bit more experience as havnt done it for 12yrs. i was realy luky to as i got a machine for £4 from a women by me. its old but works brilliantly.

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[tanyap]

Hi Hels and Faye,
Well I dont have internet access in work anymore so I cant be online so much but at least I have it at home eh?

My knee is alright, Im impatient that its taking so long to come back round to normality, it still feels weak and I still guard it. I dont really notice in everyday life, going to work, at home, but I do notice if I go somewhere like a big shopping centre and people are dashing about past me. Today I went and bought pillows and a duvet etc...and the stuff wasnt heavy but it was big and awkward and I had some trouble walking while carrying all of it - cos I kept bumping into things and Im still not good at just righting myself on my feet if you know what I mean.

Hels thats great news about the sewing machine, something you can do despite your knee eh? Thats the spirit!

I hope this Gaspar bloke has a solid plan lined up for you, it doesnt seem like the medicine is doing anything for you at all. Its horrible that you have to go through all this before they bloody fix you!!! Its the same way I just kept getting sent to physio and physio just kept wanting to discharge me and the horrible OS just kept acting like I wasnt doing my exercises even though I was killing myself doing them. At least gaspar has a back up plan, even though he isnt telling what it is!!
Do you have any appointment to go back to the OS who sent you on to Gaspar in the first place?

Faye how have you been doing, I hope youre ok after your cousins funeral and all.
xx