Very profound and moving article

[HiveMind]

I found this article online. I don't mind admitting it made me weep......because I recognise so much of myself in it.

butyoudontlooksick.com/arti...

[Katie18]

thank you for sharing - i think we can all identify with some of it. A very brave author to put into words

[PMRpro]

Christine Miserandino has also written another post about living with chronic illness which is a brilliant dissertation on how to manage chronic illness, PMR included.

butyoudontlooksick.com/arti...

[orsen-trapp in reply to PMRpro]

Is one allowed to disagree with the article? I suppose there's more pressure on folk 'across the pond' to look good, cheerful and healthy at all times ... but when folk tell me I'm looking well I take it as a compliment, smile and thank them, knowing that they didn't hold back from insisting I got in their car rather than walking home when I looked really, really ill.

[PMRpro in reply to orsen-trapp]

I don't know! But I see where you are coming from. The other stuff I have seen from CM is much better (IMHO).

I said to a US member of another forum today that, being blunt, I do find that folk "across the pond" are far more fixated and introspective about their illness - this lady is in a downward spiral about her PMR and is utterly helpless as a result. Since PMR does often include "depressive mood", I suggested she speak to her GP about it.

She had asked about my own story, I had 5 years of PMR, not diagnosed and so no pred. It was pretty painful, but it didn't stop me in my tracks, I rearranged life to fit what I could or couldn't do, still went to the gym even if all I could do was aqua aerobics at my level and use the steam room! Then I had 6 months of far worse fairly pear shaped PMR - but it still wasn't something that trapped me in my home panicking I would never be able to do things ever again. She seemed to think I was wonderful, a real warrior. No, realistic I feel.

I wasn't greatly amused at being 5'1" and 87kg, or having farmer's wife rosy cheeks. But that was the pred - and it has gone away.

I would say it is more profitable to look outside ourselves and see the people who are far worse off than us. Like my niece with cystic fibrosis who at 38 has 50% lung function on a good day. Or my granddaughter with severe brittle asthma who has been in resus in A&E 4 times at least in the last year and has a school attendance of 47%. Neither of them are wallowing in self pity despite knowing they probably aren't going to get to be as old as I am now.

It's all frames of reference.

[orsen-trapp in reply to PMRpro]

Nice to meet another 'shortie'! Sounds like you're another 'fit and ill' person. I do know folk who wallow and want me to wallow with them but also plenty who have worse conditions (eg MS) who just get on with it and make the most of their lives without trying to make others feel either guilty or miserable. My husband's had asthma all his life and I don't let him wallow when he's tempted so I've no excuse to do so myself! He goes running when he can and is well-muscled and rugged-looking so most people wouldn't even realise what he was like before inhalers and assume he's perfectly 'normal' - whatever that is! Ironically, I'd always assumed I'd be looking after him, rather than vice-versa!

[HiveMind]

Good points, everyone. It just struck a chord with me because since last September I've had repeated illnesses; most of which I've never experienced before. I guess feeling a wee bit sorry for myself.

[PMRpro in reply to HiveMind]

It's winter! Ever thought you might have SAD? I did every winter when I lived in the UK - hasn't been a problem since we moved here. The days are slightly longer than Scotland I'll grant you - but I think it is the brightness when there is snow (not a lot this winter mind you) and the attitude: so it's cold/wet/snowing/generally foul? Get out and have a walk or something! It snows, if it is heavy everyone stays home until it stops snowing unless they have to work, then the tractors are out and scrape the worst away and everyone is back to normal.

[orsen-trapp in reply to PMRpro]

I think a lot of things are down to attitude. I love the foul days because I do the outdoor/indoor work I have to do then the fire is lit and there is time for real afternoon tea, whether hot buttered crumpets or home-made cake. In summer we're working so flippin' hard there's no time to stop for such luxuries; tea and cake tend to be munched while doing yet another job! Speaking of which, himself is away out with the chainsaw and I'm feeling well enough to help with barrowing the logs. Had a good night's sleep for once

[HiveMind in reply to PMRpro]

Lol! SAD? Nahh. Not really the SAD type. I just had a wee wobble and made the mistake of voicing it on here. It won't happen again.

[PMRpro in reply to HiveMind]

No BB - I hope it wasn't a mistake. If you can't have a wobble on a forum designed for your illness where can you have one???? I did find that PMR made me very emotional at times - not the pred, definitely the PMR.

The only downside with a virtual support group is you can't sit down and have a chat over a cup of tea/glass of wine/slice of cake. How can we remedy this??????????

[orsen-trapp in reply to PMRpro]

Hmmm, PMRpro, let's see ... imagine a lovely log fire, comfy chairs, really nice tea served in proper cups (or are you in a mug mood?). To start with hot buttered crumpets with honey or plum jam. Smoked salmon sandwich? Ginger biscuits with a wee bit of root ginger on the top. What cake shall we have?

Before I get too carried away, time to light the real fire

Serious point - I can usually escape into books or classical music but I'm getting quite carried away with that imagined tea.

[HiveMind]

You can't. The emotional side of this illness is by and large ignored by the medical profession. A virtual chat just doesn't cut it sometimes.

I'm lucky I have a fantastic husband who picks me up when I'm down and I don't know where I'd be without him. However I am aware some people don't have this "escape route" and I really think something needs to be done about this. Generally I don't moan, about anything, and I certainly don't want to "wallow" or indeed want anyone to "wallow" with me! The very idea makes me shudder.

In total honesty I wanted a bit of recognition about how I was struggling. Pathetic? Maybe. But there you are; I'm only human. Sometimes the facade falls and the need for someone to recognise what we go through (as a fellow sufferers) seems important. I didn't expect to be labelled as a "wallower" or a SAD candidate!

Never mind. None of us knows just what each of us deals with on a daily basis and I would never presume to hold my life up as a template for others to follow. Congratulations to those of you who never have a "wobbly" moment. I hope you continue to do so.

[orsen-trapp in reply to HiveMind]

Hmm, sounds like you're having a bad day, BB - the wallow comments were, I think, before you posted so definitely not aimed at you. And it's true that the lack of light in winter affects most people even if only a few end up with SAD. Let's face it, all of us deal with 'stuff' on a daily basis and so do the 'healthy' folk - we don't know what's going on with their work or relationships any more than they know what's going on with our bodies. We're the same people we were before we were diagnosed. Some folk make a lot of fuss about minor things like a sore toe; others limp on cheerfully or with gritted teeth to the end of the race. We're all different and illness doesn't automatically confer sainthood!

I'm sure doctors do recognise the mental/psychological effects of illness and will refer onwards if help is required but a rheumy doesn't have the time or expertise to do that sort of thing herself/himself.

[PMRpro in reply to HiveMind]

I think we DO all recognise when someone is struggling - and I certainly can't say I never have a wobbly moment, nor would I. I responded to orsen-trapp's comment about "the other side of the pond" - because that triggered something with regard to the posts I've been faced with answering on another forum (some private messages so it was up to me) where a few people with PMR are behaving as if they have been given a terminal diagnosis. And that is AFTER repeated explanations of how PMR/GCA and pred works. They've been on pred for maybe 10 days - and expected to be totally pain free by now, assuming that when someone said they could walk downstairs that meant totally pain-free and back to normal. I've honestly never come across anything like it before and it has been very hard work so maybe I was feeling a bit over-reactive.

SAD came up because of the comment you've felt like this since September and autoimmune disorders DO come with a depressive mood backpack - and pred makes no difference to that at all. And I don't think the "wallowing" was aimed at you personally.

I do disagree with o-t about doctors recognising the psychological effects of chronic illness though - in the case of PMR at least. I've come across too many (nurses too) who think as soon as we are on pred we are back to normal and able to do the lot. Then there are the ones who don't believe PMR comes with pain: "If you have pain it can't be PMR"!

The problem with this particular forum is it is very difficult to indicate things we express by tone of voice or facial expression - no emoticons as far as I know. Exclamation marks don't do much! So, I'm sorry if you felt injured by my lack of empathy, but believe me, I do know where you are coming from. Hope you feel a bit more up soon.

[orsen-trapp]

Sorry, BB, re-reading I see it was your thread in the first place. Still, my comments were general and not aimed at anyone in particular. Looking back over my life, the most helpful people have been those who said, 'Keep hold of the bloody rope' when said rope was stripping the skin from my hands, or 'Don't let him faff about; show him who's boss' (about a pony, not a man ).

I've found most of the nurses and doctors I've come across, while clearly acknowledging the psychological aspects of illness and sympathetic towards their patients, tend to be of a practical nature. However, I will never forget the compassion in one consultant's voice (she had me in for tests to try to find out what was wrong, having dealt with me as an emergency admission on two previous occasions) when I said, 'I just want to get some energy back.' and she just said, 'I know'. It was the way she said it, and she ran every test she could think of which, in the end, helped other consultants reach the diagnoses.

[HiveMind]

I have to admit energy (or lack of it) I struggle with on a daily basis. The continued "ad hoc" illnesses I've had since September haven't helped. I've tried many different things to give me some energy but nothing works long term. It seems it's about elusive as the Holy Grail (and maybe just as mythical?).

[orsen-trapp]

I had a lot of help and advice on fatigue from a friend who beat ME. (Not 'a friend who beat me!!'). One thing she suggested, which I tried and found helpful, was to be very strict about how long I did a particular task, eg working in the garden. Half an hour work, half an hour rest, or an hour of each. I found I got more done this way than attempting to finish the job. Even if it was only an hour and a quarter needed to finish, I stopped strictly on the hour.

At the moment, I'm not doing that because I'm trying to build up some stamina and muscle ready for the next bout (being realistic because this is my first time on steroids and nobody knows how far I'll be able to taper before flaring) so I'm pushing myself a bit, eg digging one more row after I feel I've had enough. I had a good day yesterday until my batteries ran painfully flat after supper but that was bedtime anyway. It's odd, that fatigue pain, isn't it? Feels like pain but not in the same way as banging your funny-bone or stubbing your toe.

[rubyred777]

I liked that article. im from the copd forum. People don't realize how much planning must go into some people's day. They just hop in their car and go!

Other people have to plan every step of the day. Whats that saying, don't judge another man till you walk a mile in his shoes?

😊😀 xxx