What to Tell People

[FleetRose]

Quite recently there was a thread giving ideas of how to explain PMR to other people easily. I cannot find it and would be grateful if someone could remind me of suggestions.

I am about to go on holiday with my husband's extended family (22people!). Though some of them have a vague idea I have been ill I would like to give them an idea so they understand why I will not be able to join in some of the fun and games, strenuous walks etc. The description n the NHS website really does not do it justice!

Thank you in advance.

[DorsetLady PMRGCAuk volunteer]

Memo to yourself - if I see an interesting post I might want to refer to again - save it! or email link so that I can keep it in a file or notes on iPad/iPhone.. 😊

The problem is not all posts have a title that actually refers to the question being asked - yours does - but it doesn't bring up any related posts more's the pity - neither does a quick search [but that's HU for you!].

Have just had a gallop through July's posts - but none seem to obviously fit the bill [must admit I didn't read every one all the through!]... although I’m sure I did reply to it somewhen, but like PMRpro I have too many replies to track.

So unless the author of the original post see this it's a bit like looking for a needle in a haystack...

With GCA I used to say something like this -

My immune system isn’t working correctly so my body is fighting itself and makes me feel rubbish a lot of the time.

There is a lot of inflammation in my body, particularly my blood vessels, so they don’t let the blood circulate around my body as it should.That causes stiffness, pain and fatigue, so I cannot go on a long walk or do lots of similar things without resting frequently.

I need to take drugs [steroids] to control that inflammation. Some days that works better than others, and if I do too much or get stressed then it flares up.,, and I have to take more to get it under control again.

I don’t know how long I will have it, but hope it will go away one day.

I might look fine and normal on the outside, but inside it’s a different matter.

[FleetRose in reply to DorsetLady]

Thank you DorsetLady, I’m sure it was you who replied before and that’s very helpful. Your explanation is short and to the point, I don’t want people switching off before I’ve finished!

I’m getting better at using the HealthUnlocked site and do save some posts but I need to organise myself better - there is so much useful information out there!

Thank you again

[PMRpro Ambassador]

Second memo to self: don't say "I have been ill". That implies you were ill but are now cured. It is a chronic illness and sometimes can be lifelong. There is no cure although it can be managed quite well with tablets but that doesn't take away the poorly feeling and the fatigue that is so much more than just being tired and isn't helped by a sleep. Resting only lets you do a bit more ...

[FleetRose]

Thank you PMRPro, several good points there, especially not to say ‘I have been ill…’ - I hadn’t thought of that. Also that sleep doesn’t help the fatigue and the constant feeling of being generally unwell.

I’m just trying to pack now and it’s so hard to find the energy, 12 days after Covid too.

Thank you again, really appreciated

[PMRpro Ambassador in reply to FleetRose]

Never mind the PMR - 12 days post Covid you can play that card for all it is worth!!! We had a large camper van until Covid - but had to sell it because of my husband's health. Packing was easy, just involved taking a load of clothes out of one wardrobe and putting them into another! I flew to the UK last November and deciding what to take was a nightmare! And I do have to pack for my new VW camper, not as much room!!!

But I do have to say - the prospect of a group of 22 extended family really would cause a relapse for me!!! My daughter arranged birthday party for me last weekend, inviting my brother and family over too. We just got into double figures and that was more than enough all at once!

[FleetRose in reply to PMRpro]

Yes, I think I deserve a medal! We have been doing these holidays for the last 28 years though I’ve missed the last 4 years because of Covid initially and then PMR when I felt I couldn’t cope. I hope I’ll manage this year as I do get stressed very easily. We have managed to secure a room in a separate small cottage on site, not the main property, so it should be a bit calmer 🤞PS I can relate to the packing nightmare. Fortunately we have an estate car…

[whitefishbay]

I tell people that it is like waking up with full blown arthritis.