Fed Up! Fed Up! FED UP!

tillytop

Sorry peeps, major rant alert. Anyone with a sensitive disposition might want to log out of this thread before I start. You have been warned...

Seriously though I am really, really not coping and I don't know where to turn or what to do. Breakfast this morning consisted of Weetabix (very nutritious), chocolate (well, it was organic) and - wait for it - white wine (not much but still...) :shock: Now this is most unlike me - I am not in the habit of drinking at breakfast time and the fact that I was feeling just that bad, has really shaken me.

I have been trying to work out what's going on and I think I have sort of figured it out. Firstly, I have had two steroid infusions in as many weeks, as well as my normal pred dose and I know from past experience that high-dose steroids tend to mess with my head. Secondly, I think I was so focussed on getting through my first two Rituximab infusions that I hadn't given much thought to what would happen afterwards and I think it has finally dawned on me that, even though I have now had my first two Rituximab infusions, nothing is going to change in the short-term and, when the steroids wear off, I will have at least another few months of juggling the evil meds just to try to manage. So back to decreasing the mtx cos it makes me feel rubbish, upping the pred to compensate, reducing the pred again cos it makes me feel rubbish, trying Diclo instead for a few days until my stomach starts complaining big-time, upping the mtx again and so on and on and on and on...

And to top it all, after much ticking, muttering and teeth-sucking about my blood-pressure at the hospital recently, I went to the GP and came away with three more meds to take - one to regulate my heart-rate, one to lower my BP and an anti-osteoporosis med - all thanks to the b steroids.

I am also just so fed up with pretending everything is ok when it is SO not ok. When people ask how I am, I have got to the point where I just want to scream at them "how the ***** do you think I am trying to cope with this dross day in day out, year in year out etc etc. And, when listening to friends and family talking about the minutiae of their daily lives I find myself on the one hand just being irritated by the "trivia" which is so important to them, and on the other so jealous because my life doesn't allow me the chance to be interested in the trivial. Then I start to feel like a horrible person, having all these uncharitable thoughts.

I feel as if I am being sucked into an arthritis vortex and, if I spend too many more days sitting in my sad little corner, watching mindless daytime tv I think I will just go stark staring mad. I've even largely lost interest in my garden, which is most unusual and even getting lost in a book is difficult due to lack of concentration and to my flippin eyes

To anyone who is still reading at this point - thanks, and apologies for the rant. Just helps to put it down in writing and to get it off my chest.

If I could get down onto the floor, I would be lying there right now, kicking my legs and screaming loudly, having a proper hissy fit. But hey, I can't even do that (could probably get down, but wouldn't be able to get up again) :roll:.

Any thoughts, or words of wisdom much appreciated.

Tilly xxx

dreamdaisy

No words of wisdom. Just some love and a few of these. ((((()))))

tillytop

Thanks DD - much appreciated.

Tilly xxx

keith1971

Damn! Now that's what I call a rant!

Sorry to hear your coping mechanisms have seemingly up & left. The wine at breakfast thing isn't a route you really want to go down, take it from a former lush.

Life is a bitch sometimes but we have to get on with it & there really isn't anything wrong with thinking all the stuff you mentioned.

I'm sure you'll get things back on track Tilly, I'm sending you lots of love & best wishes that it comes sooner rather than later.

x x

p.s. did the doc put you on beta blockers? I'm currently attempting to wean myself off the bloody things as my ticker is now plodding away at 57bpm & everything feels like walking through treacle........

valval

well what can we say nothing that will truelly help. i wish we could wave a magic wand but does not work but getting it off your chest does help so have read it all and hope it helps a little hugs to help get you through val

tillytop

Thanks Keith.

Yes, low dose Beta-blockers for the racing heart-rate and they have had an almost immediate effect which is good. And ACE inhibitors for the BP but not started those yet. Sorry about your "walking through treacle".

Tilly xxx

tillytop

Thanks so much Val.

Tilly xxx

dreamdaisy

You have been on this long, long road for a good few years now: you have had terrible trouble with some of the drugs and setback after setback. I think people on the outside think that 'Well, it's arthritis, you've had it for years, you know what you are up against, sort yourself out.'

Twerps.

Arthritis not only messes with our bodies, it messes with our minds and emotions, our thoughts and feelings, our moods and tempers. They all fluctuate as much as the damned disease. Arthritis is more than aching joints and painful swellings, it is more than struggling to move, struggling against pain, struggling to sleep, struggling to stay awake, struggling, struggling, struggling.

Have a little more love, and a few more of these. (((())))

Two lots from me on the same day? Ye gods. :shock:

skezier

Hi Tilly,

On a flying visit but couldn't not answer this one.

I been there flower and know what Yul mean but in my case they didn't help at all and actually told me to go away. I got though it in the end with music, visualisation and meditation and most of all counselling.....

I couldn't get my head round this cr+++ bone thing and how much it takes from you. With the counselling I learned to cope in my self so the pain and rubbish wasn't me it was just that useless body I am trapped in....

It kinda was what helped me... though it has lead to a total lack of regard to pain somehow and I trash the shell as often as I can.

Its hard flower to wait for results that might improve things for you. If it doesn't work then you have waisted all this the time as well, thats not helping you I shouldn't think.

I so hope you will feel better in your self and maybe the rant helped? if it did keep doing them flower cus its all got to come out else it flies out and thats not good for you.

Leaving you a cuppa and a Deer who is charged with helping you and making you feel better ..... he will even lend you his collar if you need. Love and a bucket of hugs and feel better drafts Cris xx

stickywicket

Oh Tillytop, my heart of stone has gone all mushy and my eyes are feeling funny. Must be that nice glass of red I've just swallocked off too quickly. Please don't pretend that everything is OK - not to us anyway. You're not fooling anyone.

You are feeling the way you do because you've had a thoroughly sh1tty time of it for far too long and it's so dark you can't even make out the tunnel let alone the light at the end of it. And, if you're 'a horrible person' I'm a sexy siren with a body any red-blooded male would lust after.

Keep talking to us. Don't go through this alone. We may be absolutely b----y useless at words of wisdom but we do care about you very much and, unlike much of the rest of the world, we do understand.

However, I've got serious misgivings about that breakfast of yours. It's a sin to eat chocolate with white wine.

Poppyg1rl

Oh Tilly my lovely,
You are really going through c**p :sad: getting it all down helps, in many ways it makes you see just how bad things have got.
Re the steroid infusions, they totally messed me up in hospital. The blighters are pure evil, but they do serve a purpose.
Tilly, is there any chance you could see your GP and tell him/her how bad things have got? Im so sorry Tilly, you've been so supportive to me and countless others on the forum, I don't know why such lovely people get afflicted with this blasted blasted disease and all the rubbish that comes with it :x
Sending huge buckets of love, hugs and strength your way. (((((()))))) xxxx

tillytop

Thankyou so much DD, Keith, Val, Cris, Sticky and Poppy for your kind words. Your posts have made me laugh and cry. I'm not good at sharing cos I'm quite a private person but it really has helped to admit how I'm feeling and to be able to share, knowing that you really do understand.

I'm hanging on for dear life to DD's philosophy of "it will pass, these things always do".

Thanks again.

Love Tilly xxx

PS: Sticky, never mind being a sin to eat chocolate with white wine - the best thing ever is to dip the chocolate INTO the white wine - you should try it sometime

dreamdaisy

:shock:

suzygirl

Oh Tilly, I have only just seen this. I am so so sorry you are feeling this way. Your post bought a tear to my eye. I can really identify with how you are feeling, I haven't had the meds you have had or arfur for as long. I do know though, that it really messes with your head. Add in steroids and :shock:

You are such a kind lovely person and you are so supportive, you have really helped me and many others on here. We understand and will try and help you through this. I feel as though this horrible illness brings out my worst side. The pain, frustration and tiredness just get you. Then you look in the mirror and think who the *** is that? Others just don't 'get' it.

We do set our hopes on certain goals and when they pass and there is no change, it hits us hard.

I can't make things better for you, I so wish I could, but I am sending you HUGE ((((((((((((hugs))))))))))))) and lots and lots of love x

jillyb1

Do hope you're feeling a little better after getting some of what you're feeling off your chest . Can't add to all the love and support that everyone has sent , but will just say please don't bottle it all up again ; keep sharing and let us all try to help if we can ; thinking of you and sending more positive vibes . Jillyb

ironic

Hi Tilly,
It is such a rollercoaster I know. It does just hit you like a great wave. I wish that I could give you great words of wisdom. You are always there to support us all and can only hope that tomorrow is a better day for you. I understand the feeling of the brain cell going walkabout and being unable to concentrate when you are so overwhelmed with this rubbish illness. I do hope with all my heart that Rituximab works in the shortest of times for you.
One day at time but you know that. All I can do is send you a bucket of hugs.
Lv, I x

80squeen

Hi Tilly Im afraid I cant offer any words of wisdom only sympathy a listening ear and a cyber hug im so sorry i cant do more for you take care kindest regards josie xxx

stickywicket

tillytop wrote:

the best thing ever is to dip the chocolate INTO the white wine quote]

Oh Tilly! You are in a far worse state than I realised.

Yes, the chocolate will taste better but what the ---- will it do to the wine?

Forget the 'private person' thing for the time being. Go public. No-one should have to carry that load solo. Oh for heaven's sake, if you promise to keep talking to us I'll promise to dip my chocolate into my wine. Just hold the sick bowl for me, will you?

mp1952

Hi Tilly

Sorry to hear things are getting you down at the moment... You have had such a rough deal these past months.. I'm sure some of how you feel is, indeed, due to the steroids and, absolutely, as DD says, this will pass and you will bounce back again..

Take care.

Marion x

skezier

Hi Tilly,

just leaving you hugs and hopes for a better day tomorrow. See you for breakie about 6 then..... will ride one of the lodgers up You got any hay there? The deer said you have........You hang in there and thinking of you. Cris xx

dreamdaisy

Oi! OI! Four and twenty virgins came DOWN from Inverness, they didn't go UP to . . . oh never mind, sticky, put the kettle on please, our girl needs a black coffee.

Morning gorgeous, I hope you are feeling a little better/brighter for telling us what is going on. You know we are here, you know we care, you know we are thinking of you. I know you analysed everything so beautifully, and accurately, but even being so self-aware does not stop the great tidal tsunami of hopelessness that sometimes engulfs. I am thinking of you - and no, you can't have any more, this is DD's. Hic. Have some more love and ((()))

julie47

Tilly I have only just read your post, sorry i am a bit late.

I have no words of wisdom but i do send you hugs(((()))) and a big bucket of hope ...... that you feel much better today.

Take care
Juliepf x

tillytop

Well Tilly's Bar has been doing a roaring breakfast trade this morning! Think I might have started something! There has been a serious amount of wine drinking (virtual wine only this morning for me, honest :roll: ), chocolate dipping, a happy hay-eating deer and Sticky is looking very green over there in the corner.

BUT, it has cheered me up no end so thankyou, thankyou, thankyou to Suzy, Jillyb, Ironic, Josie, Sticky, Marion, Lynn, Cris, DD and Juliepf for rallying round and for making me feel it was ok to get it off my chest and to share how I have been feeling. I do feel much brighter this morning thanks and at least clearing up after you lot will give me something positive to do today .

I can't thank you enough - you are a wonderful bunch of peeps.

Lots love Tilly xxx

stickywicket

Morning Tillytop.

You are quite right - clearing up after me will take some time. I'm sorry. I did my best but tomorrow can I go back to tea & toast please? PLEASE? Just stick the wine in the fridge, I'll have it later.

Oh, and please don't make this a 'thank-you-over-and-out post'. You're in this for the long haul and we want to be in it with you. All the way. Despite your wierd breakfasts.

Poppyg1rl

Hi Tilly,
Good to see you a little brighter today, I think you needed to get it all out and off your chest yesterday, we're are here for you, I think you do an amazing job of heroically putting up with so much of the cr*p arfur deals you. Thinking of you Tilly hugs in bucket loads on their way to you ((())) x

bubbadog

Hi Tilly, Don't want to contradict you with silly words just want to give you a big ((HUGS)) and hope you feel alittle better today. Amanda,(bubbadog).