feeling so low - update - updated

toptottie10

I have received a copy of my referral letter from the hospital today and although I was told my MRI results seeing it in black and white has just knocked me for six again. I'm so depressed about this latest set back with my health, I think first time round when they found prolapsed discs in my spine I was hopeful of a good outcome, this time i'm all over the place emotionally, basically my spine is in severe degeneration so fixing one bit will just add to the problems with the rest of it. I am trying to be optimistic but i'm very frightened as this time there is compression of the cord involved and it is in my neck as apposed to my lumber spine which has always caused me pain and problems in the past.Sorry to rant, I just have to be patient and wait to see what the specialist advises.
gentle hugs to everyone xxxxxxxxxxxxxxxxxxxxxx

UPDATE - Hello to everyone who has been supporting me this week, I feel a bit better today, i'm in a better head space, hubby took me out for a coffee and cake this morning, it has chirped me up a bit, i'm now trying to put all the medical stuff into a little box in my mind until the consultant D Day arrives, Thank you all so much for your support' it hass really helped me a great deal. I have to confess i'm an avid reader of this forum but don't post very often,it was fantastic to come on here and share my news because it is true what we all say that although others can be sympathetic they really don't understand the impact that arthur has on our lives not just physically but emotionally. A HUGE HUG TO YOU ALL YOU ARE NOW PART OF MY FAMILY ON LINE. xxxxxxxxxxxxxxxxxxxxxxx

UPDATED - I have had a call from the hospital today I have an appointment for 28th April, I was a little shocked to say the least at how quick this has happened, WOW - what do you think good or bad ?????????? I'm hoping good........

MissKat

Gosh, always seeing it in print is hard I know...

I can't imagine how you must be feeling, but you go ahead and rant girl! That's what we're here for!

Keep positive whilst you wait to hear from the specialist, it's hard I know, I hope it won't be a long wait for you...

Big hugs... gentle ones... thinking of you x

Dottydoodah

You poor thing. You must feel terribly low.
Give yourself a little time to mull it over. And be misrerable if you like. It is allowed sometimes

Big hugs

Poppyg1rl

I am so sorry, it's hard getting your head around all the complications Arthur sends us letting it all out on the forum is the best thing, we can all empathise with the scary elements. I'm waiting to have my MRI on 23rd having just had a bone scan yesterday, not sure what they'll find if anything. I would say, take one day at a time, try not to look too far ahead as lots of things can change, some of them for the better Rant away on here we'll all be there for you. Sending buckets of healing hugs xxx

barbara12

Hi toptottie
Im so sorry , like you say seeing your results in back and white isn't very nice.
Like the others have said take some me time, do things that you enjoy, and then take it from there, I know its easier said, but I do wish you well.
Here's some hugs to be going on with ((((())))
You know we are always here if you want to talk or even rant
Love
Barbara xx

caterina57

Hi Toptoddie
Sorry about all this, you are bound to be scared, the unknown is always a bit scary, hopefully your specialist will be able to help when you see him sending a ((((((())))) cos I know that neck and lower back pain is not nice having lumbar and cervical spondylosis myself!
Cath

ironic

No wonder you are all over the place and feeling down. I do hope you can get some reassurance when you go for you appointment.
Hang on in there flower, lots of gentle hugs,
Lv, Ix

julie47

Hi toptoddie

just sending you a big hug ((((((((((())))))))

It is a scarey time for you but try not to worry too much,...Says I a big worrier myself.

I hope the specialist can give you some good advice.
Perhaps you could have some questions ready for him.
Take care
juliepf x

toptottie10

Thank you so much for all your hugs and best wishes, I have tried to have a bit of a sleep this afternoon if only to escape the scary thoughts......lolol
I'm sure i'm just being a big jessy about it all, I know so many of us suffer in different ways with arthur, it is a right pain in the **** at times. Thank you again for letting me rant.
Love to you all and lots of hugs (((((()))))))

suzygirl

Rant and vent away, it is allowed!!! I have neck and back problems and it is scary when you think about it. I hope they are going to suggest a treatment plan for you.

(((hugs)))

skezier

Hi TT,

Sorry I missed this yesterday and hope your feeling a bit better today?

Its always hard to see the starkness of a letter but the thing i try to do is remember its hasn't changed anything except to know they wont give you any surgery.

Your going to be ok and they can help a lot with pain control and maybe a bit of physio? Its not as hopeless as your feeling it to be flower.

Leaving you a ((( ))) and I really hope you are feeling a lot better today and nice to see you again. Cris x

toptottie10

Hi chris, I'm getting my head around the letter and trying to be more positive. I'm having a real sh**ty day today massive flare up I think this is due to the stress of the last week, I've taken max meds today so hopefully I will get a better night, last night only slept a couple of hours. I'm hopeful that the consultant will offer me a care plan for the future, I'm still scared about what the future will hold for me. I'm not ready to give up yet...........
Gentle hugs to everyone (((((( Sally )))))))

skezier

Hi Sally,

Oh flower I am sorry you have had a shift day and glad you have got your head round it a bit more.

I honestly know roughly how you feel cus they wrote me off completely a while ago. It was bad enough to see a letter that said about too unstable for a surgical option and pain relief and control of the pa was all they could offer... but now they write Palliative care and that has really brought it home to me,....

Except nothing has changed flower. Its just stark to see it in writing.

I don't know if you already see one but the pain clinic has helped me so much and if you get a good doc (and I am so lucky and really have) they can help with the pain so much.

Sally just cus they have said no surgical option it doesn't mean your going to have to give up. I fight mine all the time..... Sometimes I win and sometimes I lose but you an still do the same as you have been doing.

I am rambling cus i have had a bad day but hope some of this makes sense.

Leaving you a shed load of understanding, and I do, and some more ((((( ))))) with the hope tomorrow is a better day. hey a friend of mine keeps telling me one day at a time... its good advice. You hang in there and this lot are always here for you. luv Cris xx

julie47

Morning sally

Hope the flare has eased a little and that today is a bit better for you.

Take care
Juliepf x

sparkle

Hello

I'm not fully aware of your situation but I can sympathise to some extent. I recently had an MRI on my neck and have been told it is unstable in a couple of places. I've got an appointment to see a neurosurgeon in a couple of weeks time. I'm terrified what he's going to say.

I've had hips and knees done and I can cope with that but spinal issues seem in a different league to anything I've had to deal with before. It seems that with arthritis we just get used to our condition then it throws something else at us.

I've got loads of doom and gloom things going round my head that he might say and have been really winding myself up about it over the past few weeks. I think it's ok to feel down from time to time as life is difficult. I've got to the point now where I've got the bad feelings out of my system (for now) and trying to concentrate on other things that make me happy.

I hope you are feeling a bit better and are able to focus on more positive things. Hope you don't have too long to wait to see your consultant and that they can offer you some kind of relief.


Sparkle xx

toptottie10

Thank you Cris, Julie and sparkle, thank you for your post's. Today i'm still feeling rough fibromyalgia has gone into max speed during this flare up, so stiff ,sore and exhausted beyond belief.
I was previously referred to a pain clinic when I first had problems with my lumber spine, they were very helpful, I now take a multitude of pain meds etc, this enables me to function on a good day as in I can feed, wash and toilet myself, wooooohooooooo, wouldn't it be great if for one whole week we could be symptom and pain free.
I said to hubby last night, "lottery win" or " pain free" I said stick ya lotto money i'll have the pain free any day !!!!!!!!!!!!!!!
I will catch up again tomorrow I'm of to have a bowl of soup, then a curl with the duvet..
Hugs ((((((Sally)))))))

seamonkey

Hi sally,
I have just been reading your first post and i immediately felt for you. Sounds so much like myself and its so very hard. I hope today you are feeling a little less depressed. So very difficult to not let it get us down. My spine has also let me down, i didnt quite realize how badly untill i went docs yesterday and i happened to catch a glimpse of a letter surgeons had sent. So very hard to accept a life like this. Bad enough to get through each day.
I hope they can find a way of helping you more.
wishing you well,
seamonkey

Airwave!

Hey, don't worry about ranting, it's just letting off some emotional steam, keeps us sane the rest of the time.

I don't usually answer these threads, I'm not much good at the huggy stuff, your words did strike a cord with me and some truth can be very stark and take you to some dark, dark places. Keep smiling.

skezier

Hi Sally,

I am late and meant to do this yesterday but I hope you having a better day there and starting to feel a bit better as well?

I wonder could you get a referral back to the pain clinic? I see mine every 3 to 4 months and he is so helping. Its a bit invasive but hey it works and for that I would have them do what ever they want.

Leaving you a ((((( ))))) and a hope flower. Cris xx

speedalong

Hi Toptottie, I'm sorry you are feeling so low and scared. Confirmation in black and white rules out any hope that there might have been mistake, that you might not have arthritis etc However also it is just a name for what you have been living with and experiencing. The advantage of a clear diagnosis is that the medics can plan the best action/ treatment/ managment strategies.

Be easy on yourself. We have all gone through this process...

Speedy

toptottie10

Hello everyone,i'm having a better day today after resting the last couple, yes Cris I can be refered back to pain clinic if I need to, I still have some other drug options within my care plan, with the drugs i'm on I can cope on a day to day basis, but flare ups are whole different beast........lolol
I have both osteoarthritis, fibromyalgia, IBS, duplex kidney's and advanced degenerative disc disease so I guess it's pretty complex, I have a fantastic GP who takes care of me. I will give it to the end of next week and then I will start to pester the hospital for my appointment...........
THANK YOU ALL FOR YOUR SUPPORT
HUGS & LOVE XXX SALLY XXX

skezier

Hi Sally,

Flower its all a juggling act as one drug upsets one thing and they give you something to stop that ad it upsets something else..... I know for me the pain clinic has been invaluable and mine pain doc has been so good as well.

keep it there in the back ground if your happier with that but if they are good they will really help you.

Sorry you don't need this juts now but leaving you a ((((( ))))) and glad it was a bit better yesterday and hope today was a bit better again. More hugs and a cuppa. Cris xx

toptottie10

UPDATED - I have had a call from the hospital today I have an appointment for 28th April, I was a little shocked to say the least at how quick this has happened, WOW - what do you think good or bad ?????????? I'm hoping good........

madwestie

Sally, hopefully the consultant will be able to give you a care plan and then that will be good.
For me it is always better to know then I can work out how to deal with it, so hopefully you will get the support to help you deal with whatever comes along.

Tracey