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PMR and working: The Spoon Theory reprised

 
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MrsE



Joined: 31 May 2016
Posts: 685
Location: Italy

PostPosted: Sat Jun 04, 2016 1:44 pm    Post subject: PMR and working: The Spoon Theory reprised  Reply with quote

It's OK everybody - I haven't gone totally nuts, I promise! I have posted this under "Diet and exercise" too, because of the exercise aspect I suppose. But this is about practical issues.

I've started this as a new thread as I can't find the thread where Diane was talking about the massive amount she has done and wondering about increasing her dose back to 12.5mg to cope. I did find the one where Gill talked about her problems dealing with her part-time job but I thought this does really need a new start.

I replied with a rather "downer" post about how we must remember we are NOT 100% healthy. There are people who think because we are on corticosteroids and look really well (chubby and rosy cheeks and so on) that we are back to normal. I've heard people say their doctors have told them they'll be fine once they start the pred, one lady mentioned her husband didn't understand why she wasn't fine now she had the tablets. I have no idea what world those doctors are living in - it isn't the one I inhabit, at least.

This is an illness that is not cured by the pills - the pred allows us to manage this by reducing the inflammation that is the cause of the pain and stiffness and may, if we are lucky, lead to an improvement in the fatigue. The pred has had no influence on the underlying autoimmune disease process that is the real cause of the problems - it causes the inflammatory response. But this management is not a committee of one, it requires us to have some input too. If we continue to go at life the way we did prior to being ill we will have a bill to pay at some point.

At higher doses of pred we may feel well enough to do that - unless the pred unpacks some of its less pleasant side-effects. PMR and GCA themselves can cause brain fog - but so can the steroids, especially at higher doses. The more we want to do with our muscles and joints that are affected by the PMR, the more steroid we are likely to need to control the pain afterwards. But we also know that those higher doses of pred are putting us at risk of the side-effects. We have to achieve a balance between the steroid giving us a decent quality of life with a minimum of pain and being able to continue as superwoman (or man  Wink ) on a steroid-fed high. Since we need to get those pred doses down, we have also to contribute to the management plan by modifying our lifestyle to help.

I know it's unfair that you can't carry on as you have always done - as my daughters say "Life's a bitch, and then you die"  Rolling Eyes . The reality is that our current hand of cards isn't all aces - but with some skilful play we can still win a few tricks.

MrsK has often referred to the Spoon Theory and it has been mentioned here on the forum before. I was reminded of it this afternoon and thought I'd post this link:

http://www.butyoudontlooksick.com...written-by-christine-miserandino/

This lady has Lupus - a far nastier thing than what we have. But her explanation to a friend of what living with a chronic illness which varies from day to day in its effect on her is a very clear outline of what management really means. Most of us have had a day where we felt fairly well when we got up but halfway through doing something realised it was going to be a real struggle to finish - and what is more, tomorrow would be a struggle as a result. I go out to walk to the village feeling absolutely great and full of beans - until I am a hundred yards down the road when the leg pain starts. If I think before setting out and walk that little bit slower I can achieve much more before having to call it quits. And I won't have sore muscles for hours that will stop me doing other things into the bargain. A win-win situation, I'm sure you'll all agree.

Eileen
_________________
PMR since autumn 2004, pred since summer 2009. Started on 15mg, lots of problems - but 5mg Jan 2014 - Jan 2016 and another flare!
"Maybe I can't stop the downpour, but I will always, always join you for a walk in the rain."
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mariarita



Joined: 27 Jun 2016
Posts: 256

PostPosted: Sat Apr 22, 2017 8:11 am    Post subject: Reply with quote

Dear Eileen. Yes. You describe PMR so clearly I am frustrated that doctors ae mostly so ignorant about this illness. And even the illustre professor at the Hospital "rheumatologist class one..." was not much more up to it than the rest of them....I have managed on my own, but do feel pain and at times am very very tired. When I am so tired, I just go to bed for a while and rest.
Try not to worry and relax as much as I can. Pain is forever present to various degrees. Not too unbearable, at times hardly noticeable....Very stiff first thing in the morning, wearing off as day goes along. On and off I have learned to live with it.  My appetite is good...so at least I can enjoy some nice food.....Not cooked by me....I am a lousy lazy cook....I may end up poisoning myself with some of the concoction I came up ......! Keep well! gmx
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BettyE



Joined: 03 Jun 2016
Posts: 418
Location: Norfolk England

PostPosted: Sat Apr 22, 2017 11:57 am    Post subject: Reply with quote

Passed this on to my RA and breast cancer friend and neighbour who tells me it's required reading in both clinics. She says there is another called Circles of Concern and deals with all those involved with the patient and is a warning about those who, hearing you are ill, then try to offload their problems onto you! No link but she'll hunt it out if I cannot find it.
_________________
PMR 1999  30mgs to nil 3 yrs  few problems. Clear 5 yrs, ret Feb 2008.  On 15 mgs. more difficult ride. Muscle weakness, more pain, yo-yo dosing, depression.  1 mg. (May 2013 )

Hip replacement 23.5.2013 Zero pred. 28.10.2013.
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jenny



Joined: 03 Jun 2016
Posts: 350
Location: Cumbria

PostPosted: Sat Apr 22, 2017 6:43 pm    Post subject: Reply with quote

Thanks for your really helpful post, Eileen.  A valuable reminder and I have found the spoon theory useful in helping my mother understand her friends situation where some days are better/worse than others.  Not everyone can see that below the duck on the water the legs may or not be working!

I also remember a post from possibly Mavis on the old forum saying she would clock the next person who tells her how well she looks!!!  They mean well but it somehow seems to belittle how we are.  Not sure I have put that very well but hopefully you know what I mean...............
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Jenny

Diagnosed pmr 2012.  Several flares.  Managed this last flare a bit better, now just need to avoid them!
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MrsE



Joined: 31 May 2016
Posts: 685
Location: Italy

PostPosted: Sat Apr 22, 2017 7:00 pm    Post subject: Reply with quote

Know exactly what you mean!  I'm lucky I suppose - no-one ever says it to me!!!!!
_________________
PMR since autumn 2004, pred since summer 2009. Started on 15mg, lots of problems - but 5mg Jan 2014 - Jan 2016 and another flare!
"Maybe I can't stop the downpour, but I will always, always join you for a walk in the rain."
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christineb



Joined: 10 May 2016
Posts: 468

PostPosted: Sun Apr 23, 2017 9:52 am    Post subject: Reply with quote

They say it to me !!!!! Grrrrrr. If you feel left out Eileen I'll send one of them over to you Rolling Eyes

In the meantime I will soldier on in my own sweet way  Laughing


_________________
PMR Diag Oct 2010 . Pred. start at 15mg rollercoaster  to 4mg, a flare and  increase to 10 then 30, got to 5 then a flare now at 8

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