PMRGCAuk

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How?

This is not a whine and I personally don't feel I ' need to get a life ' tho, you may do. I have my home, my family, my garden, an active mind, I'm sourounded by nature. What more could I need?

The thought of travelling to and across London would never have appealed to me and the letters A G M in combination would send me running.

We are, as we keep saying, all different, and I can see that meeting up would be fun. We are all at different stages of PMR/GCA, but how will you manage it when most of us agree that making a bed is enough to make us want to get in it.

In my case it would involve taxi to station. Then hoping there's a seat free on the platform while I wait for the train. Two hours on train means getting moving at the other end may take a while. Then walking the length of Victoria Station in crowds of people. Even with a stick I will feel insecure. Will I make the distance without sitting down? Will there be a seat when I need one? Better take the wheelchair! I will need someone to push, Hubby can't travel so Son will need to take a day off work- expensive! Two train tickets needed.

I have now been active for at least 3 hours time for a rest. Book into hotel. The only way I can see this happening is to travel up the day before- 2 days off work for Son, 2 people in hotel.

Next day cross London to venue, underground out, must be taxi.

Sit for hours in a hard chair ( will there be beds? ) and at last meet some what I already know to be lovely people.

Return to hotel to recover. Next day repeat journey in reverse. Another night in hotel for 2 people.

This is me just coming from the south coast not the north of England or the wilds of Western Super Mare!

I'm exhausted just thinking about it. I read about You Lot going on days out, holidays even and I wonder how you manage.

I hope everyone going has a marvelous time and has enough spoons in hand to get through, please tell the rest of us all about it. I for one am in awe!

79 Replies

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Hi Scats, Yes, I "hear" you and the thought is daunting! This will be the FIRST undertaking of it's kind, for me, since being diagnosed last November! I have done things and gone places, but always with my OH and always very well thought out and pre-planned to the nth degree.

You ask, "...how will you mange it?" My simple answer is, "I have no idea!"

As you say, we are all in different situations... I am traveling only an hour and 15 minutes on a train, from Brighton, right into St Pancras; it is about a 15 minute walk to the venue from there. So no need for a hotel. I don't use a stick/wheelchair, although I should because my knee (which needs replacing) will be SCREAMING after walking 15 minutes! I will travel alone, so OH won't be missing work and the day's expenses should be minimal.

For me, the decision was a matter of "pride" I guess... a test of sorts! I want/need to prove to myself that I can still do things; that I want to do! I need to prove that I can go someplace unaccompanied. That I can spend the whole day outside of my home in a unfamiliar place, with people I don't really know, at an event that is totally outside of my comfort zone!

I will be hoarding spoons all week in an attempt to spend more on Saturday... but I know I will "pay" next Sunday anyway... but to me, it seems worth it.

Lovely reply mamici 1 I respect your choice your'e probably braver than I am! I hope you enjoy the day I'd send you spoons if I could, good luck!

Thank you! I will accept your virtual "spoons."

I will have you there with us in my heart!

I've been so 'lazy' this week I should have some spare spoons. I'll send you some to help you through your adventure.

Many thanks!!!!! That is very generous of you!

I had hoped to go and my journey from Worthing would have been only a tad longer than yours but now have to look after grandson as daughter has a work commitment. It would have been good to put faces to some familiar names. I hope you all have a good day - and enough spoons!

Ooooooo, so sorry to hear that! Bummer. We could have traveled up together... : (

Thanks, that's a good thought. The company would have been enjoyable and we could have propped each other up on the walk. Do enjoy it and I'm sure everyone will report back,

Thank you.... I will definitely have a "Rant" about it I'm sure... : )

PS Enjoy your day too!

Hi Scats

I know what you’re saying, l too was planning to go but am now heading to France on Thursday as we had to find dates that suited us all.

I think it might be a good idea if it could be out of Central London next time, maybe at an hotel where we could drive or be driven to, we would then have an option of a bed! 😂

If that’s not possible maybe we could think of organising our own Get Together a bit like the Regional Groups but for those who are up to it? Melissa, what do you think?

Mrs N x

LOVE IT!

Good idea out of London. Enjoy your holiday.

Scats. Profound thank you. I think all of what you said. How do people do this stuff? If I get to the supermarket it’s a top day out for me. I look with bitterness at social events being advertised. They are all beyond me even the ones for people like me!!! What does that mean????!!!!! Thank you for saying it. Xxx

Perhaps I over think things and should just go for it like the others but I'm like you supermarket is major outing, as long as it's not too big! Luckily I'm not a great one for social events so it doesn't make me feel bitter.

Angela darling fancy a quick trip to Melbourne I have a pretty spare room waiting for you and a gorgeous nail salon I can take you to five minutes away!!! Xxxx

What a wonderful idea! ✈️ l wish!.......

An out of London venue would be so much easier for us ladies with various mobility difficulties. There are lots of conference facilities at hotels with car parks etc.

I considered going to the AGM, but it would be a 14 hour day for me from the north of England. On the following Monday, it's our local PMRGCA meet-up, for which I'm joint Group Organiser, so I have to be compos mentis and mobile! Decision made - not to attend! I'm really sorry to be missing it and meeting up with everyone.

Good idea to move the venue out of London - why not up North?!

You realise I could probably get there and back in about the same time?

Me too...... race you?

I suppose I could get there a bit faster from Leeds Bradford airport!

If I didn't have the meet-up on the Monday, I'd go and rest for the next few days.

Next year.....

Fine by me as long as there is parking nearby, but the midlands might be better for every one.

The south east is always lumped in with London as if it represents the whole area, it doesn't in any way. Nither is it convenient for most people.

Haha - that's a bit controversial! London is the centre of the universe - according to anyone who lives inside the M25!

I think though it is because getting across country is the pits - but trains run from most places to London. Unless there are works, strikes, wrong sort of leaves/snow/rain/hot sunshine ... None of which seem to have any effects on our trains.

Although I was born here I have spent most of my adult life in Wales and the west country, both of which feel neglected because everything is London centric. It's the same here but the others think if London has it we do too.

This isn't how I hoped the thread would go. I was more interested in how people managed these outings where ever they were, but it seems that so far most seem to just go for it.

I'm with you to be honest. I couldn't face what you describe - because I would get in a car to a really convenient place to park and get a train to the nearest station/underground to the AGM. All that messing about you are faced with would put me off too.

I know I do do an awful lot and it doesn't bother me now - but I have had years of experience to practise! Long distances are probably easier than what you face - I get on a plane and go to sleep. At the other end I get off the plane and go to sleep - providing I planned it right in the first place.

In a couple of months we are going to Scotland for a uni reunion. OH was going to fly - until he looked at the flight options. Affordable means arriving somewhere at midnight and getting up to leave in the middle of the night - it isn't quite ski-season That would have helped! So I said no way - I'd rather drive. It is me who drives the car most of the time so it is my say! It will probably cost a bit more but I can do it. Having to hang about waiting for a flight, that might be delayed, even cancelled, and late nights/early mornings, walking - that is what I find killing. If I'm sitting comfortably, even if I'm driving - that's OK. The driver's seat has a lumbar support - the passenger seat doesn't. So I drive.

I drive about 5+ hours a day: here to the other side of Stuttgart, next day to Amsterdam, overnight ferry to Newcastle, up to Dundee. It will be the same coming back. I know there is a good restaurant and comfortable bed at each stage. If I get too tired - he will drive too for a bit. We have been known to say sod it just a couple of hours from home if it has got too much and found an overnight. All our journeys are planned in much the same way. I love driving and I love seeing new countryside. I'm seriously considering driving to Malta in the winter - we have to drive to an airport and pay to park or pay a fortune for a bus transfer that will be at the wrong time - so still need hotel rooms. So I'll have one north of Rome (Rome is 7 hours by car) and another before Sicily (Messina is 14 hours), maybe a few days, even a week, on Sicily and then ferry to Malta. And sightsee on the way. Then do not a lot in reasonably warm Malta for a few weeks and come home before Christmas. But I wouldn't do that on public transport.

Thanks for that. Unfortunately I would have to do it alone and the whole prospect is too daunting. I do occasionally ' just go for it ' and pay later but not in a situation where is no backup and where there so many unknowns, usually something prescious like a visit from the grandchildren.

Exactly - I would quail before your journey on my own. Wouldn't be much better accompanied by him indoors! My fear was always getting stuck somewhere and not knowing how to get further because I had hit the wall of fatigue. And having someone with you doesn't always help if there isn't a taxi handy for them to pay for

I think that's it exactly. It happened to me half way round a garden centre last year, that was minor in comparison. As I have said elsewhere, perhaps I over think things but I have always liked to be prepared for any outcome.

Had that happen to me when I was on a walk in the country with husband and son and I honestly didn't think I'd be able to get back to the car. But one does. Just keep putting one foot in front of the other. And I was so annoyed with myself because I'd forgotten my pedometer, and maybe it was a record walk for me! We are going to do it again sometime.... Odd how the fatigue hits all of a sudden.

Scary when you're alone tho. I had to just sit at the side of the lane for a while once, lucky it was very quiet, because my legs didn't want to move again.

How's the move going?

I threw away another bag of papers today, and tidied up another lot. Shall we just say, "slowly". But every little bite is progress.

Bravo Heron. It’s progress. Xxxx

Scats I have had to lie down in public. It’s excruciatingly embarrassing xxx

The fear of suddenly being hit by fatigue has put me off doing things by myself now. Now I've discovered wheelchair assistance at airports though I think I'd be OK with flying as long as I was dropped of inside the terminal and met at the other end. I don't drive long distances anymore because when the brain fog hits I'm not safe!

I really do know what you mean. I haven't experienced brain fog that stopped me driving generally - but it did happen halfway home from the airport after a long flight and OH was tired too so we just stopped and found a room. I refuse point blank to arrange an unreasonable day's travel - and the first time I arranged airport assistance was after OH had booked a connection at Chicago that theoretically was fine - except we had to go through immigration before the connecting flight to Calgary. I didn't know if we had to change terminals - and that is hell on earth! So I booked assistance. With the result we were through immigration the same speed as crew, got to the check-in for the Canadian flight and through security again despite an interesting moment (the staff member pushing the chair put his bag in with mine for some reason - he'd put his mum's best kitchen knife in instead of putting it in his locker after having pineapple for lunch!) and got to the gate with over an hour to spare! So we walked back a bit to get a drink...

I was having problems with driving when I was tired well before I had PMR ( possibly fibro fog). Scared myself once when i realised I'd been driving on the wrong side of the road for a while when after coming off a fast dual carriageway. That was after an evening meeting. I avoided evening driving after that. Another time was late afternoon after I'd been shopping with my husband. I knew I was tired so was driving very slowly and carefully. When we got home my husband heaved a big sigh of relief and said it was the first time he'd ever been scared with me - I'm normally a good driver

Scary isn't it. I only drive short distances at the moment. Once my rt leg siezed up on me not easy to get off the road. Was alone and had to stop and recover. Another time I couldn't get out of the car, luckily I was home. I do find it more difficult to judge the position of the car on the road so I drive much less these days.

Opticians tomorrow, I'll be on the road again, I recommend avoiding the Hampshire Sussex border!

Scats I am your twin. I do the square root of zero most days and it’s a challenge to be showered and dressed and totter about. For three weeks now I’ve had a daily ambition of going to buy wool so I can at least knit but I cannot seem to feel well enough to drive there and park and go upstairs and look at the stuff etc. I always have something “more urgent “ like getting a prescription or a blood test. I feel so bloody impotent. I feel powerless. I can’t and won’t “ push through “. I think it is years of doing that which caused my illness. If I can go for a walk with my dog that’s a good day and also a priority. I really cannot stress how compromised my life is. I could as soon go to a meet up as fly to the moon. I too ask HOW. I am delighted some people can do it but I can’t. It isn’t just you Scats xxxx

Thanks Daisychain. I think that you may be right about what we have done in the past. I spent 10 years caring for my parents which prevented me going out much . Now I am not used to it.

Watch that knitting - very repetitive exercise - soon makes my arms ache!

Scats you’re like me we prioritise and grandkids are the cherry on the best bit of the icing xxxxx

What a lovely uplifting post PMRPRO. I am so happy you are living the best way you can. I admire you so much. We all do. Love Linda xxxx

Morning Scats

I read all the replies while l was awake during the night.

I used to manage ‘Trips’ & ‘Cruises’ much better than l do now!

The thought of London fills me with abject horror, it’s not that long ago l said l don’t think l’ll ever go to London again!

I don’t often say it out loud but l only live a ‘half life’ at my own pace but l like to achieve something everyday. Today it’s Charlotte but at this moment l feel like l’ve been run over by a steam roller, so waiting for the Pred to kick in!......

What dose are you on these days Scat? I was at the dreaded 7/7.5mg & all its issues with the Adrenals kicking in or not?

It’s the Fatigue or DF as Uncle MB calls it that’s our real enemy because you never know when it will strike, no matter how much you prepare ie rest before an event it’s still a major risk.

When l go away or on holiday l always pack well in advance so in the week running up to leaving l can forget about it, so l’m good to go!

Today l feel as if l’ll never be able to get out of bed again but once the Pred kicks in, I’m optimistic!

When l’m a bit more myself l can send you some other coping skills for achieving this, just currently unable to focus all that well!

Angela x

So kind of you thanks!

I've been up half the night too and know the early morning steam roller well.

I thought you were one of us coping well, lovely pics of you going things and terracotta army, well impressed. You are right it is the DF thats the problem. Slow wobbly walking would not be so bad by itself.

Currently at 11mg. Its taken months to recover from a flare last winter, family problems and cataracts didn't help. I seem to get stuck at 12mg so this is me doing quite well. Pred since Jan 2016.

I like to give a good impression but these are the highlights of my days.

I know l’ve achieved a lot this year especially with moving House but it’s not been easy.

I take my breakfast in bed & usually stay there until l can move, l take a nap or a rest on the bed most afternoons, while we’ve had our visitors we’ve had lunch from the Deli or M&S ate out for Dinner & everyone has looked after themselves for breakfast, there was a fridge & cupboard full of breakfast goodies so plenty of choice.

These friends have seen me at my worst so they know how l am & insisted every day l took a nap! For the Warriors we went the day before so l didn’t have to travel far on the day, took my breakfast in bed instead of rushing & trying to keep up!

That’s the one thing l’ve learnt, stop trying to pretend your OK you can still achieve things if you plan accordingly.

With moving House we’d been sorting things for 12months before & we were going to have a full packing service as there was no way l could do it, however, with the constant delays l did a bit each day, we hired a Storage Unit & l actually did it all in the end, there’s still so much left in the unit to unpack but hey it’ll wait, l have everything l need for now!

I keep a tight diary, l only do one main thing a day & won’t be swayed as l’ve been there, done that & got the TShirt!

Truthfully, l need some real rest & honestly would have preferred not to go to France but my wonderful husband needs a break & l want to see our other son & his wife so l’ll get there, it’s an early evening flight so no rushing & getting up at Silly O’Clock!

Pacing is the key, avoidance of stressors is essential. I’m very lucky l don’t have to do the Supermarket Shop, just M&S Food, l cheat these days, l only bake for my son who has a serious Dairy/Egg Allergy. I order most of my clothes online & likewise my Beauty Products! DH does his own ironing & l have very little of my own. I’ve had PMR almost 7 years, it’s more a way of life now but this year has been particularly hard.

So Scats don’t feel down & think that we’re all doing better than you as to be honest we’re all struggling against the odds but like to highlight the good in our life mainly for ourselves to prove we are still living as best we can against all odds! Sounds like a Song! 🎤

Angela 💕

Thanks for such a detailed reply Angela, you certainly well organised. Just think how impressive you'll be post PMR.

I do a lot the same as you already. I keep a diary so that I know what causes any aches and pains. I used to note the weather but found it had little effect on me. I also note any unusual stress - handling my mothers estate etc. That does have an effect!

I'm very impressed that you managed to move house, but there again forward planning has paid off. We are not moving house just expanding into the granny annex, everything is moving except us.

I also have a supportive husband and son combo and we make a good team.

On line shopping could have been made for us I agree. I started doing it when Mum was still alive, she could move faster than me and was a liability in supermarkets. Then she thought it was very posh to have it delivered.

Don't worry I'm not letting it get me down, I just wondered how you all managed it. We never were ones for going out much and now OH has panic attacks if we are too far from home and restricts our outings more than I do.

Thanks again for such a detailed reply, lets hope some of the new members find it they should find it very helpful.

Enjoy your holiday!

Lots of similarities of my life Angela xx

Scats, I'm with you all the way on this one, even though Waterloo is only 20 minutes away for me. In fact, I gave up going to London before PMR. Travelling by train suddenly lost its appeal for me, much worse now. Everything you say is a mirror of my feelings!!

Thanks Jemsea I was beginning to think it was just me.

Definitely not just you, as you can see. I would have loved to have gone, but was too scared that it would leave me unable to function at the local meet-up on Monday. Also we've got friends coming for a (simple) meal on Sunday and I'm already worrying about that - quite unnecessarily, as they are lovely people and both NHS workers who understand about PMR.

All this from someone who worked, ran the house and garden and helped care for elderly parents until they died. Where has she gone?

I did all those things too. I begin to think that once my parents died I moved one step nearer the head of the queue. PMR certainly makes me more like them than 'me'.

I feel the same!

Lost my first reply. Such a skill 🤨 Anyway I tried to say that I also never considered going to this meeting. Apart from the fact I'm up in Scotland, the nightmares you see on the news about traveling by train would put you off. Overcrowding, imagine no seat 😨 people bumping into my shoulders 😨 and the possible delays. I've sent mamici1 some spoons so I'll be there by default. We'll here about what we missed won't we.

She's got some of mine too. She may well need them, perhaps we should send some to the others. But then we just might need them ourselves.

It’s bravado scats I”m terrified and it will be the first time I’ve gone anywhere without my OH since I was diagnosed. Sorry if this has made you feel bad. Part of me is already making my excuses. I am hoping for one of those rare good days. I go to Spain the next day. It’s insane really!

Did you just post and then take it back mamici1? Or am I hullucinating? It is you that gave me the guts to go. You’re so much iller than me.

Hope all goes well for you Jane, enjoy your day!

Ummmmm? No... I don't think so. I just now saw these two posts... Unless, I'm losing it! ?

It’s the nesting, I saw your post just now. Sometimes it makes a nonsense of the conversation. I have been the first to answer a post in the early hours when only Angela ( Mrs Nails) and I seem to be awake. I find it loitering at the bottom as an afterthought when I next look. Are you all meeting in Fortnum and Mason in St Pancras? The walk to the venue looks complex yet short in Society House, 8 All Saints Street, by a canal I think. I think I’ll get a cab. Anyone would think I was the key note speaker the way I am worriting.

I always want to bail these days. I like the idea of a conveniently situated get together - in a spa preferably - at a later stage.

Ohhhhhhh, I do hope the urge to bail is squashed by your desire and piqued interest to meet (face to face) Mary63, Telian, Suuha, Conundrum, Bamber99, Marymon, Suet3942, CT-5012, Duddy999, Retailmonkey, Marijo1951, Markbenjamin and ME!

NOTE>>>> Apologies to anyone else who is planning on attending, but do find their name above. I was grabbing names form here and there and I'm sure some names have fallen through the cracks, my apologies.

I do hope you can pull it off def give you bragging rites over the rest of us.

Nah, No bragging rights! If (big IF) it works out, it will be all down to luck, good fortune, or the stars aligning... I cant take credit for things over which I have no control! ...and I have no control over anything. : )

So fingers crossed and keep an eye on those stars. " Your'e a braver man than I am Gunga Din" Good luck

HA! Braver? ...or more foolish? Time will tell.

R.Kipling. "Kim"! Ha! I remember something from school!

I seem to remember he wrote exceedingly good books!

"IF".......... Only we could eat them on a low carb. diet!! I always remember the character Hurree Chunder Mookerjee. (GCE.English Lit. 1964. FAILED!)

You all make me want to go! If only?

...and ME! Where's my name? Told you I was coming with my sister, I'm waiting for her to tell me the times as I could not make it on my own. My pred head would be positively dangerous finding my way alone. Probably be landing about 10.30. I'll reply to your post to confirm when she tells me, she's now considering driving up to Stratford! so once she's decided the time I'll let you know BUT I am coming, booked my ticket ages ago. I just hope I can keep awake for the 'show', keep it lively MB!!

OMG! How on earth did I forget you!!!!! I am sooooo sorry!

I know how... I took the names off the people who responded to the "let's meet for coffee," post, and you had not responded. (Which you did not need to!)

I am sooooooo sorry!!!!!!

xxxxx

You don't need to be sorry, and I'm sorry too, the written word can come over really harsh, but you should know me by know... I knew what you'd done I just don't like to be left out.....still finalising times but my sister's been having g/children for sleepovers before they go back to school so time not been her own but we will be there promise. We're trying to head for no later than 10.30, hopefully earlier, for coffee so fingers crossed - just train times to be confirmed, we're having to go via Fenchurch Street as engineering works on the Southend to Liverpool Street line with bus connections - no thanks. Might drive to Stratford now and come across from there, my sister is looking at the times and making a decision, I have to wait for her and she don't rush! but I am grateful to her as I couldn't come on my own - a straight 'one train' journey I would do but it's tube as well from me and that's a no no - I'm not up to that alone - I'd be like Del Boy on that boat in Spain that time - going round and round for ever! xxxx

Main reason really, to see some of the dear souls I know so much about and my own Rheumatologist at least from a distance. It should be better than all the dreary things I organised and attended for work

Seriously, no pressure... I'll understand if you don't make it.

I know you would understand as I would if you didn’t come. Grunge bought me a first class ticket and reserved me a seat. Wasn’t that thoughtful of him? I have been better lately - so now it might be reclusive, habit holding me back. If anyone flags we will all understand.

That feels safe, because we all know that we are ill and what it does to us. 🧗‍♀️🤸‍♀️🧘🏼‍♀️🌷

Thanks scats. This condition has never been a matter of willpower. It’s bigger than we are.

Think you've made the right decision so don't beat yourself up! There are only a handful going in comparison... I'm going into my 5th year of GCA/PMR and this is the first year I've considered anything like this and only going because my sister is taking me and I feel much more normal since diagnosis, I will rest if it gets too much but it is a long day. I only live 30 miles from central London yet it takes a good hour and a half with fast train and tube to do it in time. Although I've travelled lots before illness I would not attempt to use the tube on my own, my brain gets scrambled easy and it would be suicidal for me to attempt it plus my family would not allow it. My sister lives in Sussex and it would be just one train straight into King's Cross for her from home. Instead she is driving to me in Essex the night before and we need to be on the road by 7.45am on Saturday. We've managed to get a fast train, then it's underground. She's now looking into driving to Stratford and if we could make a later start. So just relax at home, you might be able to make it another time if the venue is more condusive to Us Lot another time, I don't know where you live. x

Enjoy this new found freedom!

I will cos it won't last...

I feel the same except I would use the wheel chair, assuming my husband was happy to come too. We're both retired so days off work aren't an issue. It would be an extra thing to fit in though. Although I do manage to go away and have holidays they have to be rationed both for energy levels and cost. What would have been a day trip in the past is now often a one or two night stay in a hotel. A trip to London would be two nights. I'm exhausted now after a family gathering and overnight stay on Saturday and can't even imagine going away again any time soon.

As Mrs Nails said earlier PMR determines what we do and how we do it. It's a way of life.

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