A Juggling Act

dreamdaisy

Picture the scene: a deserted big top, no cheering crowds, just the one spotlight, into the path of which wobbles a fat woman, precariously balanced on a squeaking unicycle. She slowly circles the ring, whilst carefully juggling the following: one humira pen, one meth syringe (with an exposed needle, to add a litle frisson of danger) and foiled packets of sulphasalazine, naproxen, omeprazole, ramopril, bendrofluorazide, steroids of 5mg and 2.5mg, co-codamol 30/500, tramadol 50mg, slow-release trammies of 100mgs, alendronic acid and a bottle of oromorph. She occasionally lobs a packet of steroids to a rheumatology nurse who follows behind, chanting 'We want you off the steroids, we want you off the steroids, we want off the steroids . . ' and receives in return more tramadol. For each packet of lobbed steroids there is an increase in wobbling, for indeed the fat woman's joints decrease in their ability to move as the influence of the steroids drops.

What is one to do? The steroids keep me what is laughingly called 'mobile'. A nice dose of 15mgs per day is enough to ensure I can last with only 4 co-cos to take the edge off. I can move around the house without support (well, apart from the walls) just needing the crutches to get about outside. Now I am down to 7.5 mgs and the pain has risen accordingly. I am back to using a crutch around the house (so what? That's nothing new) but I now need one for the nocturnal visitings to the lavatory, and I haven't been in that territory for a few years. This is dis-spiriting. Pain has been a constant feature for years now, and I am not stupid enough to think that will ever go, but it has risen from a gentle background to life to now shrieking white noise. Sleep has improved inasmuch as the pred sweats are seriously in decline, which is a good thing, but I am doped to a worrying extent - pleasant at the time, but it does make every-day life harder - a bad thing. I know that when the next flare comes (which is a given, this disease is not controlled) the rheumatology nurse will lob back to me more steroids and will receive in return the stronger pain medication. Is there a happy medium? I don't think so. I pedal on.

Which is the least deleterious to one's long-term health? Steroids or morphine? Hobson's Choice indeed. DD

speedalong

Oh DD,

I really don't know. From what I understand it is like a seesaw - either you have higher steriods and lower morphine or lower steriods and higher morphine... If this dilemma isn't rhetorical I would ask a pharmacist which it is safer to be on higher doses on ... which has least side effects etc You take meds to counteract high blood pressure, osteoporosis etc What other side effects do these meds have that can't be counteracted?

Speedy

dreamdaisy

Yup, I have the BP meds to deal with the side-effects of the humira and the steroids, and have had a fairly constant nosebleed since Saturday, also deleterious in its way, I guess. The alendronic acid is supposed to guard against steroid-induced osteoporosis, gawd knows what that is doing apart from being a total nuisance. I empathise with the treadmill - all that walking and getting nowhere . . . . . wot larks Pip, wot larks. NOT. Grrrrrrrrrrrrr. DD

frogmorton

That woman needs some stabilizers!!!!

Anyone got any?

DD this was well written and sorry to say it (as it's awful really) made me smile too. I can picture it so well.

I will start scanning the sdmall adds for some stabilizers.

loVE

TONI XX

tillytop

Oh DD you paint a wonderful (if bleak) picture!

There is no easy answer to this conundrum as far as I can see but I reckon it's about quality of life - and doing whatever gives you the best possible quality of life now. Me, I would go with the pred every time...

Love Tilly xxx

psyart

Hi DD - I'm sorry to say your discription did make me smile :oops:

Do they not ask you what you feel is best for you :?: :?: i have to say my doctors and the hospital wil do that - its our body and mind going through this hell-hole and if you know what works for you then doesnt that make sense :?:

i'm not medically minded so not sure if the long term outways the short term as if you are having so much pain now then in the long term wont that be best to sort :?:

((((((((((((((((hugs))))))))))))))))))) and support - dont really know what else to say :oops:

Louise xx

julie47

Afternoon DD

You certainly do have a juggling act there. All those meds its a wonder you can remember what you have taken.

I really don't know what to suggest, perhaps if it were
me i would want to keep the steroids if it meant more mobility.
I suppose you have to look at the pro's and cons of both meds.
Why does the nurse want you to come off steroids? is it because you have been on them too long in her opinion?
I hope you can decide what to do.

By the way I must admit to smiling ok a loud smile :oops:
at your post. It was written that well I was in a ring side seat.

Take care
Juliepf x

carola

My Dear DreamDaisy

What a wonderfully written post.

I just wish this damn magic wand would work so at the flick of my wrist .... poof .... you pain would be gone ..... one day, eh?

Medicine is not 'just' about curing but also improving quality of life. What are the doc's reasons specifically to you for decreasing the steriods?

I LOVE my steriods. They are like a big sticking plaster and allow me to feel half normal. I do not need to take as much as you therefore it breaks my heart at the thought of you having to comply with the docs when you know what they are really prescribing you is increased pain.

Thinking positive and healing thoughts for you however I suspect I know what I can do with them haha! :shock:

Love, Carol xx

salamander

Hi DD, you describe very well the dilemma many of us are in - between a rock and a hard place. I'm not quite in your league but still find it a balancing act. As someone said further up, it is about quality of life. That's the clincher for me.
xx

nanarose

DD, even at your lowest, you continue to make me smile with your honesty and humour.
I'm so sorry that you are feeling so frustrated, annoyed and very sore.
I'm afraid I know nothing about steroids, apart from the occasional jab, so I'm no use to you whatsoever, sorry, I just hope you can find some way of relieving your pain, without doing more damage......as you say a very difficult juggling act.

Chinup

DD ooohh I feel for you, Im so sorry you are going through all this pain, if I could wave a magic wand I would, If I won a fortune on the lottery I would take us on a big soft marsh mellow cloud where we could jump around and be in no pain, Or maybe to find us all that magic cure. ((((((hugs)))))) nice soft ones at that, And hey did you notice the floor in the big tent was made of cotton wool for you to land on if you fell !!.

You take care.

love di x

barbara12

Oh DD
I so wish I could help, life is not fair, I think we have all come to this conclusion.
I do hope you can find some happy medium, suppose like you say this is not always possible.
But if anyone can it will be you.
Lots of love
Barbara xx

dreamdaisy

Thank you for your lovely replies: I wrote it just to sort my thoughts out, sometimes one cannot see the wood for the trees and I was feeling so exasperated by it all. Still am, but am hatching a cunning plan viz. I will go and languish in an opium den somewhere, that should help! DD

barbara12

dreamdaisy wrote:

Thank you for your lovely replies: I wrote it just to sort my thoughts out, sometimes one cannot see the wood for the trees and I was feeling so exasperated by it all. Still am, but am hatching a cunning plan. I will go and languish in an opium den somewhere, that should help! DD

Please take me with you..
Barbara xx

dreamdaisy

Of course! Now, barbara12, that would be a giggle and not only down the opium either! Thank you for making me laugh! DD

Poppyg1rl

Hi DD
I feel for you, so much to cope with. I agree with you, sometimes you need to get it all out, write it all down. Thinking of you Poppy Xxx

dreamdaisy

It's not out of the ordinary poppygirl, I just lost perspective - I think we all do from time-to-time! The blasted weather doesn't help either: I hate low-pressure and its associated murk. And now I have to go and cook sausages - UGH. There is wine in the fridge tho See? Not all bad! DD

skezier

hi DD,

you going to share that wine or what

so your off to join a circus as a juggler then..... flower its all a juggling act eh? or maybe a high wire walk at times but this lot here are a good safety net!

glad you got some perspective back and hope tomorrow will be a better day for you. hugs in the bucket and its got long legs don't forget. love and a top up [] Cris xxx

dreamdaisy

Share? SHARE? What sort of a half-cooked, harebrained nonsense is that concept? (I'm an only child, can you tell? ) The bangers were vile (plain pork) but the accompanying veg were magnificent: spuds pulverised with unsalted butter, a little milk and lashings of freshly milled pepper, carrot batons al dente, and steamed green beans. I doused one banger in Branston (only way to eat it) whilst Mr DD polished off the other five (three hot, two cold later). Gutbucket. That's why he buys the plain pork ones, he knows he'll have the majority. Sneaky. Pie tonight, a much brighter concept: butternut squash, red onion and feta cheese for me, beef for him. More veg and sprouts (have to buy more, ate all the others raw.) I hope all is as well with you today is it can be. DD

cherrybim

Wonderfully expressed as always DD, I really shouldn't be smiling I know.

My own decision would definitely be the opium den. Steriods in whatsoever form have no effect on me but for OH they have been a disaster and he's paid dearly for their ingestion over many years. He's got severe osteoporosis, had two cataract ops and is at present in hos with an asthma attack and a chest infectiion. Guess what, he's been put on steriods again!

Yep, I unhesitatingly opt for the opium den, who knows, just might turn into another Sherlock.

Cherry xx

dreamdaisy

Your poor man. That is so tough. I have been on varying doses of the little blighters since Feb 2007, so it is no wonder that 'they' want me off them, but then they counter-act their own desires when I flare, telling me to bung them back up again. I will try, seriously try, to get thro the next flare without upping the dose: I know the short-term gain from them is wonderful, but in the long term? Do I really want my legs to break every time I stand up? I'll become morphine-dependant instead and float thro life on a little pink cloud of indifference to everything. If anybody wants us, you'll find barbara and me in a dingy building in the docks area of East London, next door to a Chinese! DD

cherrybim

Nope DD you certainly don't want the constant worry that even going up the stairs to the lavatory might result in yet another broken bone. Ahem, not in the lavatory, going up the stairs.

Now if you'd let me in on the address for the den you and Barbara will be at I'll get my hat and drawers on and join you both, providing that's all right of course.

Cherry xx

dreamdaisy

Perhaps I should hire a coach? DD

cherrybim

Yes DD, that's an eminently sensible idea.

Did you also mention that the warehouse next door may possibly be available? I think you'll need room for expansion once the word gets round

Cherry xx

salamander

dreamdaisy wrote:

Thank you for your lovely replies: I wrote it just to sort my thoughts out, sometimes one cannot see the wood for the trees and I was feeling so exasperated by it all. Still am, but am hatching a cunning plan. I will go and languish in an opium den somewhere, that should help! DD

Let me know when you find one, I'm coming too!

tonesp

What about a cople of pints of Wobbly Bob?An excellent real ale and just the thing to keep you in balance
However my love I really do think feel for you you are so kind to every one while still having to play such a sh***y hand yourself