I see this subject has come up on another thread - and it is one which really irritates me so I thought I'd do a short post to expiate my 'bother':
Many people 'boast' about NOT having to take any medication as some kind of 'badge of honour' and even (I think) sometimes 'one upmanship'. Apart from the insensitivity to others - this is plain silly - having any health condition is NOT a 'choice' or matter of 'fault' - although in this individualistic world people are often blamed for not taking sufficient 'care' of their health. BUT - many diseases will appear DESPITE what we do or the lifestyles we have - there is plenty of evidence of that !! So I admit I get quite irritated when people say 'I don't take any 'pills' - and some even state: I don't 'believe' in them !! Obviously these fortunate people have never suffered much pain or any of the consequences of the diversity of illnesses which 'flesh is heir to'. Although I agree we should be concerned about 'Big Pharma' and the overselling of substances that we DON'T really need - I am personally very grateful for the medications which can help and sometimes even cure some of the horrible diseases and conditions humans get !! So we - none of us - should be too 'proud' or 'pleased' with ourselves if we are fortunate to be healthy enough not to have to take anything at all.
Best wishes
Rimmy
Pic - Jessie Wilcox Smith 'A Child's Garden of Verses' 1909.
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Rimmy
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Precious darling Rimmy. First up. The picture!!!!! Oh how adorable. It’s like s perfect depiction of an idyllic childhood summer dream. Thank you!!!’
Re your post YES. Luckily I have rhino skin with those comments but more vulnerable members might feel bad. AND THEY SHOULDNT!!! I am desperately glad for all the pills I take. I say nearly every day “ what if I lived in a place where I could not get them” and I feel so bad for those in that situation. I need my pred!! My pain pills. My occasional anxiety meds. My cymbalta. My life is hard enough without being stubborn about that. If I didn’t need the pills I’d be very happy but there is NO STIGMA in my book about needing help xxxx. Thank you Rimmy xxx
Well said Rimmy! I feel something akin to that. With newly diagnosed people I think “ you wait” with doctors who want us off the only drug we have, even though we are symptomatic and only part way through the average length of the disease, I feel quite despairing. Some folk do come back and say “ you were right” I had to give in and take Prednisalone, in particular. Like you, I don’t trust “ Big Pharma” and fail to understand why some powerful drugs like Alendronic Acid are zealously pushed at you, needed or not.
I am sure I had a book with that beautiful picture in it when I was a child. Perhaps it was the poetry book with Walter De La Mare’s “ Someone Came a Knocking at my Wee Small Door” in it, amongst other poems. X
I do agree- many seem people to think (not necessarily on here) that drugs -bad; no drugs - good!
Of course it’s not a simplistic as that.
I do very often say I’m off the Pred, but that’s not to boast, but hopefully to let people know it is usually the end result- especially at the beginning when they are so frightened of the drug and think they are forever. Plus I took my fair share, and was extremely grateful for their properties in saving one eye when the other had been lost.
On the other hand I very often advise patients to continue taking a lower dose as a maintenance dose - and so many of us take other medication permanently anyway.
But I also think we should question whether we really need everything that is pushed at us.
At the moment I’m on pretty hefty pain killers post operation - and I need them, plus I’m sure I will still need some sort of arthritis medication for years to come.
I couldn’t agree more. They irritate the hell out of me. The word smug comes to mind. Good for them but we didn’t ask for this disease. As to the comment when they find out we are taking steroid medication, ‘Oh, you must stop taking those, there’re bad for you.’ As though we have a choice. Argh!
"Oh you must stop taking those they are bad for you" is an exceptionally stupid response. And I think I would say so (as I am a very straight-forward talking Pred head these days!).
(a) are they a medical doctor?
(b) do they know anything about the disease you have?
(c) do they know anything in detail about the medication you have to take?
(d) why is it their business and why do they feel impelled to give their useless opinion?
Yes, I can run with that. It is amazing what people come out with. It depends on the energy level of the day as to my response! Usually along the lines of, I have no alternative if I want to be able to move and have a life. Never mind the possibility of GCA and the possibility of losing my sight. It’s either that or thump them and that’s a waste of precious energy. A couple of people, both who portray themselves as exceptional fit and healthy, have made this comment. It’s the smugness and inference that it’s my own fault. I resist the temptation to say, I’ve found people who are fortunate to be so healthy normally succumb to something nasty. One is always boasting about her exercise routine, healthy eating and drinking only the occasional glass of wine. Fortunately we don’t meet very often and I know she irritates a few other ‘healthy’ friends. It’s that word, smug coupled with righteousness.
Hello peace_lover ,I feel the same.People seem to be very free and easy with giving their opinion to others nowadays.Some are very kind and concerned but apart from having PMR I also avoid several groups of food.I am frequently cross examined about my dietary choices.Some people ask very intrusive questions all delivered in a cynical manner.Obviously I don’t avoid things for the fun of it.They should back off and mind their own business.
"omg you're not taking the 'devils' drug are you?" I smile sweetly and say that yes I am and without it I would be in hell already! That usually shuts them up.
Yesterday I collected my meds and my oh's from the pharmacy. We were joking that many more (2 carrier bags) and I would need DPD!
I will add that Lidocaine plasters come in a huge box and our bottles of Gaviscon are king sized and it sometimes amazes me how huge some boxes of meds are with 28 miniscule pills in!
I'm sure my teacher great aunts had that book when I was little - I remember the picture.
I also find it worries me when someone says they are off pred in a relatively short time and others say "Oh well done", "You've done so well..." or something like that. It sometimes (not always I hasten add) makes it feel as if the person had been able to control what happened - and seems to imply that others haven't "tried hard enough". It takes me back to when OH had cancer and I had an awful year, left to deal with most of the fall-out on my own. A couple of people at the church actually told me I was having a hard time because I hadn't enough faith.
I hold my hands up to the 'congratulating' someone, who has tapered and off Pred, relatively quickly. It has NOT been my intention to make out that they are in better control. Just amazed, that, for myself, 13 years GCA, and now Addison's, and on Pred permanently,that there are folk who come off sooner than others. Sorry.
Hi Karools, I often say well done to those off prednisolone too. I am genuinely happy for them plus selfishly it gives me hope I’ll be drug free sometime too! All the best x
Please do not apologise as it gives great encouragement. I am one of those that tapered in less than 2 years but was lucky that my muscles coped with it and I had a good Rheumatologist who agreed with slow tapering. I was prepared to taper for as long as required but you don’t know if it will be successful unless you try. If it flares up again you take it on the chin and restart treatment
For me reading about those who tapered successfully was so encouraging and positive. If you can’t say “I’m pleased for you or well done “. It is like always noticing when someone does something bad but not when it is good. I personally thank everyone who was happy with me when I went to zero. I work in the medical profession and believe me, encouragement is always required to give people hope, no matter what the illness is. From my point of view, I never felt smug but nearly cried with relief that it is achievable, for however long it lasts.
One of the people who insinuated it was the rector. It was the beginning of the end for me - I eventually left the church after some 50 years making music there. No-one at that place ever came to ask why.
I told OH that I was not getting involved with any church when he retired - that was after 40 years of being Mrs Vicar and cradle - literally - Anglican. We had lots of lovely friends in the various parishes - but the last one had some truly nasty sorts which put me off completely. Your rector sounds like the kind who think God is sitting on a cloud in a long white nightie able to physically see every individual down here on earth!
Were you in Durham?!!!! I can identify a couple of really nasty things said to me, one by a US base Episcopalian priest and that was because as non-US snd non-military we didn't belong, and the insensitivity when OH was ill with cancer in the Scottish Episcopal church but what I experienced in the Anglican chuch in England was mind boggling.
No, actually in Southern Spain at the time! There were some really really lovely people there but it's amazing how a just a couple of rotten apples can be so poisonous...........
Same as Durham - but I suppose it was being possessive of "their" place.
Was your husband part of the European Diocese then? We had a student at Durham - and it just so happened he was installed in his church in Bern while we were on holiday over here so went. They were a lovely crowd and on the basis of our experience I could have shared their community happily. But you never really know...
We were, it's a huge diocese from Iceland in the west to Vladivostock! OH always says that the church is only a reflection on the society it's part of ,,,,,,,,,,,that doesn't help when you're the victim of nastiness though does it?
I think a lot is the meeting of 2 extreme views - some want nothing to change, ever, be like it was pre-war, while some want it all happy clappy and relaxed. I don't mind changes - but I do expect the music etc to be decent and the worship dignified. But it occurs to me - no wonder the UK is so divided over the B-word...
I think I was a bit smug about not needing medication, although always sympathetic to those who did need to take something. When I was first diagnosed, I was rather apprehensive about taking steroids, because I remembered my lovely Uncle Frank who went from being a skinny little whippet to being the Michelin man in the space of 3 weeks. However I never hesitated to take them, given that the alternative was possibly losing my sight and being permanently crippled. It was rather amusing when I told my grandson Gabriel, then 17 and studying at a sports college, that I had to take steroids every day. Of course at college it had been drummed into him and the others that they must NEVER be tempted to take anabolic steroids. He looked horrified and said 'Granny, you mustn't take those. They'll do terrible things to you!' He calmed down when I explained and he'd checked with Google that I was right.
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