The light at the end of the tunnel has just gone out!

purplestorm

Hi guys

Just a bit of n update on where I am at the mo and to see if ianyone can help

Started Sulf full dose about 5 weeks ago and everything was going peachy banana went back to see my consultant and had bloods checked etc my CRP had decreased from 109 to 79 so obviously in the right direcrtion and my flare ups had also calmed down only having a few little incidents every few days, I even managed 11 nights off the trot of full sleep! Things where looking up and I was feeling rather positive as if I could see the light at the end of the tunnel and getting back to normal (what ever that is)


However all of a sudden and I have racked my brains just incase I have triggered it somehow bang its back the flare ups are quite bad again this time the pains in a totally different place and where i was having the problems before has eased a lot, the nights are extreamly long again!! Im only managing 2 hour of sleep at a time max before im up in agony and hitting the morphine!

On top of this I now have my date for my assessment (11th May) with the dole regarding my ESA which is playng on my mind as I seem to have two sides to this illness during the day when im the "in pain but pointless complaining about it nothing you can do just plod on" phase and then the nights when im in the "OMGG agony cant move" phase Im just rather concerned that due to me appearing "normal" and not complaining every second if I have any pains etc that they gonna think im spinning them a line. Part of me wishes you could have these assessments during your "flare up" times so they an see how you really are Ive even had my mother in law saying to my face " theres nowt wrong with you" which only adds to my concerns!

Sorry ive babbled on again...... feel much better now, if anyone has any advise or experienced the same type of thing a few words of wisdom would really help! 8)

Again I apologise for my spelling!

xx

constable

Hi Purplestorm,

I am sorry to hear that you are going through it at the moment. I'm sure that if you have paperwork which shows your problems then that surely should be acceptable.

I can't give you any advise really as I only have OA, but I am sure there will be someone along to help you.

It is horrible when people don't understand what you are going through, and my thought's are going out to you.

Karen xx

julie47

Hi purplestorm

Sorry you have taken a nose dive just as you thought things were picking up. Arthur is an unpredictable character and will let you have a run of goog days then come back with avengence.
The only thing I can suggest for your app on 11th is take all medical notes that you may have and keep a diary of the days events plus a list of all your meds.
The stress of the 11th may also have had an effect on your health.

wishing you all the best and I hope arthur settles down soon.
Take care
Juliepf x

barbara12

Hi Purplestorm
Im so sorry you are suffering, like you say it will have eased off when you go for your ESA ...the stress of this does not help...we are all behind you, and I really wish you well with it all.
Please let us know how you get on.
Love
Barbara x

skezier

Hi Storm,

Nice to see you again.

Its not fair that you were doing so well and then bang a flare starts up. They can see your bloods and might change you but equally the sulfa takes up to 12 weeks to work so hang in there flower and with luck this one is a blip.

I don't know if you have a rumo nurse? Maybe a chat to them or the rumo or even the gp could help to sort out what is gong on? I think time might help though as they are slow acting drugs.....they have to change your immune system and it takes them a bit of time to do that unfortunately.

Leaving you a ((( ))) and a hope it will soon be got under control for you. Cris x

elainebadknee

Hi Purplestorm

I suppose life sometimes goes in fits and starts where things are good for a while, then it all goes tits up and your'e left wondering why. I know this happens to me sometimes and i get fed up but its like a vicious circle, the more fed up i get, the more it feeds on that...Thats just my take on things anyway, may be talking gibberish!
Re ESA, it is so stressful isnt it? I had my medical last march a week before surgery, failed the medical, got 12points, appealed, spent a summer of misery liaising with community legal advice people, eventually got it looked at again before it went to appeal and in october got put in group where can get support to supposedly find an imaginary job that aint there.....I have relatives who work in NHS and they tell me that when you fill in the forms do it as its your worse case scenario....Im not that devious though, im honest so i didnt...I get told also to apply for DLa but i dont think i would qualify.......

Anyhow defo gibbering....Good luck with ESA medical...Dont do anything you cannot do. They will comment on your appearance, how long you take to walk to consulting room...If you are comfortable in your seat and if you need to stand up/sit down will observe how long....They are snakes in the grass and the report wont echo your appointment...Im telling you this to prepare you, not frighten you......

Just stick to your guns tell them how hard it is for you...

Elainex

purplestorm wrote:

Hi guys

Just a bit of n update on where I am at the mo and to see if ianyone can help

Started Sulf full dose about 5 weeks ago and everything was going peachy banana went back to see my consultant and had bloods checked etc my CRP had decreased from 109 to 79 so obviously in the right direcrtion and my flare ups had also calmed down only having a few little incidents every few days, I even managed 11 nights off the trot of full sleep! Things where looking up and I was feeling rather positive as if I could see the light at the end of the tunnel and getting back to normal (what ever that is)


However all of a sudden and I have racked my brains just incase I have triggered it somehow bang its back the flare ups are quite bad again this time the pains in a totally different place and where i was having the problems before has eased a lot, the nights are extreamly long again!! Im only managing 2 hour of sleep at a time max before im up in agony and hitting the morphine!

On top of this I now have my date for my assessment (11th May) with the dole regarding my ESA which is playng on my mind as I seem to have two sides to this illness during the day when im the "in pain but pointless complaining about it nothing you can do just plod on" phase and then the nights when im in the "OMGG agony cant move" phase Im just rather concerned that due to me appearing "normal" and not complaining every second if I have any pains etc that they gonna think im spinning them a line. Part of me wishes you could have these assessments during your "flare up" times so they an see how you really are Ive even had my mother in law saying to my face " theres nowt wrong with you" which only adds to my concerns!

Sorry ive babbled on again...... feel much better now, if anyone has any advise or experienced the same type of thing a few words of wisdom would really help! 8)

Again I apologise for my spelling!

xx

bubbadog

Hi Purplestorm, I am so sorry that you have had a set back and a 'flare up' I know you must be feeling like your lost in a maze and can't find a way out to feeling better again, and what people are saying is bringing you down as well, but the main thing you must be concentrating on is listening to your body! If it's feeling it needs sleep you must listen and do it. The more rest you get the stronger you get and you will start to get stronger. I know you must be thinking who does she think she is! I am someone who has just got better from a flare up and knows how you must feel! As for people saying stupid things and they are stupid just let it go over your head! I really hope what I have wrote has helped alittle, you have alot of friends on here and we all want to help you and we are all here for you if you need us. Take care and I hope that light appears again soon, even if it is as small as a pinhole! it's a start and will get bigger. Big (())

madwestie

PurpleStorm,

Firstly your mother in law well.. if there was nowt wrong with you then you would not have sulpha would you so she knows nothing about it, and deserves to be ignored.. (i know easier said than done).
The Sulpha will take a while to work fully so it could just be a blip while the war wages between arthur and sulpha. i am cheering for sulpha hope it beats arthurs backside..

The worry about ESA can't be helping it really annoys me that the system puts people through this. i know you don't like to make a fuss but you need to be honest and tell then how it is warts and all. don't play it down because you think it is pointless complaining about it, this maybe the one time when complaining may help. also they need to know about the night time as this will affect your ability to do things during the day.

I will be thinking of you and hope you are feeling better soon

Tracey

ratface

PurpleStorm,

Could you keep a diary until you go for your appointment and then present them with a copy?

Note especially bad days and nights - pain felt on scale of 0 to 10 also just how lack of sleep is affecting you, things you are having difficulty with or can't do anymore. Basically, anything you can think of.

Hope this helps,

Ratface xxxx

tillytop

Hello Purplestorm

Just to say how sorry I am that things have gown downhill for you again.

I can't add anything to what's already been said, but just wanted to say I am thinking of you and that I really hope things improve for you again soon.

Love Tilly xxx

devonann

I am sorry that things have taken a U turn and the pains are back.I hope things are brighter for you soon.
I think everything has already been said other wise by others.
Hugs to you.

purplestorm

Just wanted to say a big thank you to everyone for replying you have cheered me up no end!

Ill keep you posted on how things are going get my fancy flowery walking sticks out to help with walking and fingers crossed Arthur will have his butt kicked soon!

x

tillytop

So glad you are feeling cheered Purplestorm!

Love the sound of the flowery walking sticks! And yes, please do keep us posted on the progress of the arthur butt-kicking

Thinking of you.

Love Tilly xxx

purplestorm

well tis the eve of my assessment and sods law ive had a few good weeks obviously the constant pains still randomly taking hold of my body but had no major flareups! im dreading it now I havent even got there and im already thinking that there thinking im making it up and im gonna fail head a bit of a mess tonight to say the least!


x

barbara12

Good Luck with it, will be thinking about you.
Love
Barbara x

theresa4

HI
when I had my appointment for ESA I told them all my problems day to day and as usual this made me cry like a baby actually sitting there revealing all the difficulties embarrassing ones too like being unable to get to loo on time, dress myself etc.. it made me cry so much whilst reminiscing on the life I had before. The nurse looked so uncomfortable as I reeled it off in sobs. I got my ESA and DLA first time round. I also gave my GP a print of all the problems I faced not just the ones he could help with like he told me he cant support it if he doesnt know the full extent of difficulties he probably wishes he never asked but he is very sympathetic and said the print out was invaluable when explaining my difficulties on the forms.

Good Luck

Theresa x

ironic

Hi Purplestorm,
Good luck for tomorrow as you say it is sods law that our appointments come when we are having a reasonable day. Hopefully the sulfa is beginning to work for you.
Refer back to your pain diary and tell them how you struggling with everything.
Fingers crossed for you.
Lv, I x

skezier

Hi Storm,

Its not fair that you are being put under this much pressure.... I so hope you can stay calm and just tell it and do it like it is and if there is any justice they will do whats right. I shall be one of many in your pocket so your not aloe in there. Fingers crossed and keep in touch please. Cris x

bubbadog

Hi Purplestorm, Glad we cheered you up abit! that's what friends are for!! Look forward to hearing how you get on. Take care. Amanda, (bubbadog). xx

devonann

Hope all went well.

purplestorm

Why do things always seem to get worse??????????????

Sorry im on one again im home alone and feeling very low!

Been to see the consultant again today who clearly said "your steriods dont seem to be working" hell thanks for that! anyway, hes told me to continue on my 12 steroids a day (contradiction in terms) for the next 6 weeks until i see him again, and then we will discuss it further and then he gave me a steriod injection in the top of both legs and after prodding and poking my back im now at home in complete agony worse than when i went to see him with both my hips on fire and aching and my back feels like i got a body builder stood on it! Its getting to the point where I dont want to go see him cos everytime i do i come home in agony!

Hes booked me in for an MRI scan as my blood markers are through the roof again so hes doing the scan on my hips and lower back and has said that if they find inflammation I will have to change my treatment and have injections so awaiting appointment date for that!

And on top of all that I had to go to my GP for a sick note and at my surgery you cant pre book an appointment you have to phone up on the day you want to go and just have anyone you can never get to see the same GP twice. Anyway (bearring in mind ive been ill really bad since Jan) and he gave me one for 12 days and told me to come back and see my usual GP! Head and brick wall spring to mind. I do believe my surgery enjoys seeing people who cant walk far in extreame pain messing about coming doing every week! ARRGGGGGGHHHHHHHHHH!

really sorry for rant thats all i seem to do at the mo, id be lost without the Forum and it really doesnt help im home alone left to brood and wind my self up over it!

x
Sorry to be twisting again but im feeling like im back where i started from again!

skezier

Hi Storm,

I am so sorry things are shift for you again. I am just leaving you a ((((( ))))) and a hope flower. keep talking to the forum folk cus they care and you are not alone with them behind you. Cris x

bubbadog

Hi Purplestorm, I'm so sorry to hear the GP's/consultants haven't given you any good news. You should say to them when you go through the door They should say 'do you want the good news or the bad news 1st?' and that way they can give you the good news last and easier to walk out the surgery/hospital with.
I know what it is like being left home alone! I'm that Monday to Friday and I agree it can be depressing, esspecially when you come home from the doctors/hospital. I used to always grab the phone and call my Dad, but he passed away last July and since then when I have come home I have gone to do that and it is hard. Maybe Purple you should come straight on here, and share news! We should open a topic for that maybe call it 'just got back from doctors/hospital and...' and that way it isn't so hard? what do you think Purple? And if you ever feel alone you can always private message me, cause I'm home alone too! Hope I can help you. Amanda,(bubbadog).