Stepping of Prednisolone, travelling light for a funeral

Mat48

Hi All,

Thought I'd try and distract myself from the fears over the coming week but coming on and boring all of you lot with it!

I heard last night that a friend, who has been struggling with cancer, has just lost her mum to cancer too. They were very close and the father also has cancer. Our family's have been close for many years and by a weird synchronicity her mother died on the same day as mine but 2 years later on 5th November. The funeral is a week today and I suddenly longed to be there for her. So I'm flying 800 miles to London, where both my sisters live, and going to the funeral with them.

As I've hardly been to my home city since my Mum, a Londoner, died suddenly I thought I should combine it with some work and family visits too so it will be a hectic five days going from bed to bed - nowhere to rest in the afternoons because sisters and friends will all be out at work and I'll be traveling from end to end of London with a small suitcase in tow.

I wonder what my chances are of having a big flare again? My last Prednisolone will be on Wednesday morning and by that time I'll have gone down from 20mgs to 5mgs for a few days. I'm okay now having had 10mgs and an ibuprofen but this morning things were definitely a tad more painful in feet and knees and hands. It's all relative and the second week of Pred bought much joyful relief from pain. I see the rheumy for the second time ever a week on Thursday and really want him to make a diagnosis so that I'm not locked in limbo land forever but I'm worried if I ask GP for more steroids it will mask symptoms and make me less focused - but if I don't get a few more to tide me over the week what do people here think will become of me? Will I flare or will the flare hold back until I get back home - just in time for the rheumy apt? Advice would be most welcome re what to take with me in my medicine bag!
Mat

But clouding all this

valval

get some but do not take till after you have seen rhummy. i take everything just incase including inflatable cushion and if got microwave a wheat bag unless some one will have one you can use good luck val

stickywicket

I'm so sorry about your friend, Mat.

As for what to take - whatever helps or might help in an emergency, I guess. There is no travelling light medwise as, the more you're hoping to do, the more you need to take on the 'just in case' basis.

Note I said 'the more you're hoping to do. There are no certainties in the arthritic world. The more inflexible the joints, the more flexible the plans must be. Plan what you will but be prepared to pull out last minute if need be. Arthritis is no respecter of plans.

Mat48

Thanks Val - yes now you've said that I'll get my wheat bag out to pack! Too busy trying to see how small a case I can manage as there will be lots of wrist work involved in trekking round London with my case going from house to house. This is the only way i will see everyone though because all my family are very scattered and I'm not spanning a weekend.

Hi Stickywicket. I've already warned my close friend that i might bottle out at last minuite - she hates that sort of thing though so didn't respond! Going to see my GP again on Monday morning (poor bloke is going to think I'm head over heels..?) to ask for extra strength NSAIDs - any suggestions? I'm meant to be going back to x3(400mg) Ibuprofen a day as I come off the Pred but I would rather have them than more pred to be honest as it gives me awful insomnia and I won't have any base to run to in middle of day if I'm wiped out by lack of sleep?

I'm actually getting into quite a stew but flights cost an arm and a leg from here so I'll have to go now. If I found my legs went too bad to walk properly where would I get some crutches to cover me at funeral etc? Silly the things one worries about because I'm fine now but it's like insurance policy I guess? Mat

stickywicket

Can't help with the ibuprofen. It's years since I took it. Just take plenty of paindullers and always have a drink & a biscuit on you to take them with.

I never did sticks or crtuches either as my feet stick out sideways so I only end up tripping up over them! I always find walking is easier than standing.

Last minute crutches? Think you'd have to buy some at a disability shop.

frogmorton

Oh Matt

l am so sorry about your friend :sad: My heart goes out to her and to you too.

You are a good friend to go all that way and in my opinion pain or no pain doing 'the right' thing

Do your best to not overdo it and look after yourself any chance you get - nice baths and early nights top of the list.

Love and hugs

Toni xx

Mat48

Thanks Toni and all - you are a really kind lot. I'm going for my friend but also for myself because I need to see my sisters and old friends and just gather up some loose ends maybe. I haven't been to London since clearing out my late mum's house and driving off almost 2 years ago. So spotted hanky on a stick, off I head to wander and see what happens re joints and head! :?: :idea:

PS I think some of you might all relate to this analogy; This morning after a night of partial insomnia I woke with a very powerful sense of being in a plane that was starting it's descent. I felt very flat and full of dread. I gazed down at the black tarmac runway and saw it was full of pain and squared up to the inevitable landing accepting my fate but also hoping desperately that it would alter it's downward course and rise up again back into the skies. I think this was about coming off Prednisolone - or maybe something more profound to do with not wanting to accept the reality of smelly old arther?? Mat48

valval

you say you are going to family well could you not stay at theres till afternoon then go to next place that way you will get some rest time i am sure they will have extra key you could post back through door when you leave ask them explaine the exhaustion to them they will have no idea other wise and will find a way to help you out good luck have relatives in london but not been for years to much hustle and bustle for me these days val

salamander

have you got a fold up walking stick, very useful in an emergency? Plus ankle/knee/wrists supports as necessary. Take painkillers before you set out not wait until you have pain. Try and sit down as much as poss and try and get some help at airports. You can book help at train stations by phoning 'assisted travel' from train company. Look up 'assisted travel' and ring 24 hours before. Did you say you were coming to London? Check out step free access stations (tube and overground, latter pretty good for that) on TfL website so you can plan your journeys. I find bus easier if I have bags.

If you are out and about in the day,park yourself in cafes/libraries/galleries/museums and enjoy the street theatre.

Personally, I would take the pred and explain to the consultant.
Hope it goes ok.

Mat48

Thanks all for your tips and support! I am still feeling pretty well really re the arther - although horribly tired - but today moved down to 5mg per day - got enough to take me through to Friday - the day of the funeral. I have tried to warn friends and my sisters that plans might change but I don't think they quite get it? The thing is - and this sounds really nuts probably - that I've got a new phobia about keys because my wrists and fingers have been so lousy I have been unable to lock or unlock when we have been away. I will have splints at the ready but have never needed a walking stick really - would love a fold up one I could sit on so if I need one I'll get one while I'm down maybe.

It's not an issue where i live as almost crime free here - but obviously staying in London suburbs I don't want to have to be left to lock up and negotiate burglar alarm systems all alone so will probably leave their houses when they go off to work or take their kids to school or whatever? So I will be traipsing about on my own a lot and that's a fact. It was different when my mum was alive - but now she's gone and the arthritis has arrived I'm really quite daunted by this undertaking as first time in 2 years. So just hope the Arther stays away or rather lurks about like a smelly old rug these days when not in flare!.

Although of course then they will all say "hey what was all the fuss of the past year been about for goodness sake - I mean look at her she's fine?!" Och I've got to stop worrying I know but will get some more Pred off my GP on Monday for emergency use only. Mat

barbara12

Hi Mat
the others have said it all really, I just want to add my support and to say how sorry I am for your friend and there family, you are such a good friend to even try to go like you are, but if you do then I wish you well with it all, and really do hope that Arthur stay away for a while
Please let us know how you get on x

Mat48

Thanks I will let you know how I get on - dreading it rather I admit - but sometimes there are more important things that we just have to get on and do and this is one such for me.

kellerman

Hi Mat,
I too think you have been given some good advise.I went down last year with my daughter and did my Christmas shopping.
I must admit I wasn't as bad then but still I had to keep stopping for coffee I didn't really want but just needed to sit a while and recharge my energy.
Airlines can be good if you can't stand for long and we found it easier to use buses instead of the uderground.
I do hope things are not too bad for you but please let us know how you get on.I applaud your determination.
All good vibes are winging there way to you. May

Mat48

Thanks May. I don't think it's London as such that is filling me with fear - I'm a Londoner by origin although have lived up here for 25 years now. I think it's because I won't have a base to go to if I just need to collapse. Can't think of a way around this because as I've said all friends and family work and live on the outskirts so it would be exhausting to go back to their homes anyway (and those burglar alarms so alarming!). I will just have to hope that if I flare up it's when I get home again - just in time for the rheumy!? Well I never know my luck eh?

valval

stay positive we are all sending positive thoughts your way to help you through val

Mat48

Thanks so much - will keep in touch when I'm down using my smart phone OR when I collapse safe and sound back home again! Mat x