Support for Tillytop

dreamdaisy

Our darling tillytop is really struggling at the moment. I'll make no bones about it, I'm worried about her. I am very grateful for her PA duties for me when she herself was so very under the weather, that took an energy she really doesn't have at the moment. I am blessed to have such a good friend. Hugs galore my lovely, I wish I could do more for you but alas . . . . . DD

mig

Morning Tilly,Hope you are feeling a little better,this bad weather doesnt help at all,been thinking of you and sending (((((((()))))))) and warm thoughts.Sending lots of love Mig and Mr Mig

stickywicket

Me - the pest :roll: - again, Tilly. I'm really sorry things are so naff for you still. Another top up ((()))

skezier

Hi Tilly,

Sorry I not been about for a couple of days but that doesn't mean I am not thinking of you flower.

The Deer is in his best abseiling gear./.. with his I love sushi pj's and smoking jacket on under it and on his way with 3 woolly loons that seem to be in their gear too.....

Leaving you a ((((( ))))) and so many hopes the day will be better for you. Love Cris xx

mig

Morning Tilly,how are you today?just stopped raining here in nottingham dont know how long it will last,sending hugs (((((((()))))))) Mig

bubbadog

Good morning my dear Tilly I wish I could pass to you my strength and make you feel better, Take care sweetie and I send you a big ((HUG)). Keep resting.

stickywicket

((((()))))

tillytop

Thank you so much for your continued support and I am sorry I haven't been able to post for a few days to say thank you.

I have been in real trouble with my "insides" since early last week but things seem now to be improving. I have "self diagnosed" which I know is not necessarily a sensible thing but can't face the doc at the moment. I do have an appt next week though anyway so if I still have stomach pains I will mention it then cos something really isn't right. My feeling is that a large part of the problem is the amount of codeine I have been taking so I have tried to stop, pretty much "cold turkey" only to discover what seem to me to be the "joys" of sudden codeine withdrawal so I have gone back onto a smaller dose just once a day to try to get some sort of balance between the stomach problems and the codeine withdrawal.

It is just so hard. I was trying to cut down the pred before my forthcoming Rituximab infusion because the steroid infusion I will have alongside the Ritux makes me feel horrible for weeks - a combination of deep black depression and climbing the walls so I figured that if I could cut the pred down first, there would be less steroid in my system so things might be easier. Talk about round and round in circles - cut the pred, so up the codeine, too much codeine gives me stomach problems, so cut the codeine and up the pred again, cutting the codeine gives me horrible withdrawal symptoms and on and on it goes. Added to which, the most frightening thing of all is that I have been feeling that I am beginning to lose my grip on reality - can't think of another way to describe it - which is due, in part I think to the codeine withdrawal but also, I am fairly sure due to some of the other meds I am taking which I can't stop - because if I stop them, I won't be physically well enough to go for my Rituximab.

Anyway, on a more positive note, I actually slept last night, having spent all the previous night sitting up watching dvds because I just couldn't sleep (codeine withdrawal again?) and today I am hoping to go out to see my friend - my Mum has offered to drive me there cos I can't walk that far, which is really kind of her. This will be the first time I have been out of the house properly for more than a week and, if I am well enough to make it, even for just a little while, I think I will feel much brighter. My friend has a gorgeous two and half year old boy and it is just not possible to be down with little Charlie around! He is such a sweetheart and one day, when I had beeen playing with him and told him I needed to sit down for a bit, he went and fetched his little plastic chair thinking I could sit on it and carry on playing. Bless his cotton socks.

Anyway, nuff of my ramblings. And thanks again for your support.

Tillyxxx

suzygirl

Oh, Tilly your frineds little Charlie sounds adorable. I have a couple of friendswith toddlers who make me smile.

You are in such a tough situation and you are doing so well, don't worry about notposting, just read and draw support and comfort from the posts. You are a very brave person who is battling, just take one day at a time.

Sorry to have been AWOL, but I have been thinking of you.

(((hugs))) x

Numptydumpty

Hi Tilly, I hope you've had a nice day.
I'm thinking of you, and wishing you well,
Numpty

mig

Hi Tilly,I know what codeine withdrawl can do to you and its not nice,i was taking up to 8 30mg pills a day till i realised what i was doing i went to gp and we worked out a plan to cut down,now i am on the correct dose for me which is 4 30mg pills which controls my pain,i still have to be carefull with them,the support i got from people on here have helped particully our DD.Will be thinking of you ,sending (((()))) Mig

tillytop

Thank you so much Suzy, Numpty and Mig for your posts and your kind words.

Mig - thank you for your words about the codeine - that's the kind of dose I have been taking and, having seen your posts about the codeine withdrawal, I was pretty sure that was what was going on with me too. I am really pleased you have managed to cut down to a manageable level.

I have had a much better day today - have been out for lunch which was lovely. Only out for a short while but it made all the difference.

Thanks again so much.

Love Tilly xxx

mig

Glad my posts have helped you Tilly,cutting down a little at a time is the way to do it,i tried cold turkey myself and it was pure bloody hell,my gp said she wouldnt advise anybody to do it.Both my gp and consultant at rhemmy clinic said this is common with people who need these stronger pain killers and both have said its good you realised what was happening and sort help,if i can do it so can you.Sending huge hugs and positive thoughts.Mig

frogmorton

My dear Tilly

so lovely to see you posted

All these meds...what a lot to work out and all the different effects....no wonder you can't be sure what causes what.

I am so sorry that you are still suffering so much though and soooo not yourself yet.

I am very heartened though that a 'non-medication' like charlie and his Mum can do so much to help you. That is a good sign bless him and her and your Mum for taking you too.

Tilly - love and hugs as usual from me - chirrups and purrs from Daisyact of course

Toni xxx

dreamdaisy

Hello gorgeous. ((((())))) DD

mig

Hi Tilly how goes it today ?wish the warm weather would come back.Mig

tillytop

Hello Mig, Toni, and DD

Thank you so much for your continued support and thanks again Mig for the practical advice on cutting down the codeine.

Today has been a good day and, although the weather has been truly dreadful I have felt better today, both physically and mentally, than I have done for a couple of weeks at least.

Thanks again.

Love Tillyxxx

suzygirl

That is good news Tilly, I am pleased to hear it. Weather is shocking :shock:

ironic

Hi Tilly,
Glad you got out yesterday, it does make a difference having a change of scene doesn’t it. I hope your appointment next week is helpful and you can change your meds to give your stomach a chance to settle. Hang on in there flower.
Gentle hugs,
I x

bubbadog

Glad you had a better weekend hun, and day by day your improving, you keep getting stronger day by day. Big ((HUGS))

mig

Glad you have felt a little better,take it one day at a time, thats the way to do it,you will getthere i`m sure.(((()))) Mig

tillytop

Thank you again for your continued support people - I really do appreciate it.

I am definitely coping better these last couple of days and feeling better physically than I was.

Thanks again.

Tillyxxx

Numptydumpty

Hi Tilly, it's really good to hear things are improving for you. You deserve a break.
I hope you continue to improve.
Wishing you well,
Numpty

tillytop

Thank you so much Numpty for taking the time to post when you are feeling so dreadful yourself at the mo. Really appreciate it and really hope your flare subsides soon.

Love Tillyxxx

lululu

Hi Tilly I have not been posting much but have been watching your progress with interest, pleased to see you are keeping better - I told you you are important to people on here and this has been proved! keep it up.