Good Planning Can Work.

[Kendrew]

Yesterday (Saturday) I had one of the loveliest and most memorable days that I've had for some time......I went into London to meet my DIL-to-be, to see her in the wedding dress she'd shortlisted as, 'the one'!

The date had been agreed and on the calendar for a few months but I was becoming increasingly more anxious as to whether I'd be capable of;- a walk into my village to the railway station, an hour's train ride into London, possible tube rides, walking, rushing, standing, waiting....then finding somewhere for lunch before coming home.

I finally decided to confront my anxieties and talk to Sophie about my concerns, and had fully intended to opt out and say that I probably wouldn't go.

However, Sophie had other ideas! I shouldn't have worried, because she'd clearly listened to everything I'd told her in the past about how PMR affected me and had taken that all into consideration when organising the day:-

- I deliberately left the 3dys prior to our trip completely free to rest up and not over exert myself.

- Even though it was only a 10min walk, my husband drove me to the station so I didn't have to walk

- I met Sophie's mum at the station so we could travel together and we caught the 'fast' train to Liverpool Street Station where we met Sophie. (50mins journey time)

- Taxi from right outside Liverpool Street to dress designer's studio.

- Two joyful hours ...sitting in a comfy armchair....watching Sophie try her favourite wedding dresses on with lots of 'girlie' fun and chit chat.

- Taxi back to Broad Gate Circus (right next to Liverpool Street Station) where we had a wonderful Tapas lunch sat outside in sunshine and with a glass of fizz to wash it all down.

- 2min walk to catch train home where hubby picked me up so I didn't have to walk home.

It all just hilighted the fact that as hard as it can be sometimes, it's so important to inform your family & friends about your condition and how it can restrict or inhibit you. They need to understand your limitations, and for many family members & friends, this isn't always easy.

I've realised how fortunate I am, as Sophie and her mum organised the day especially around my needs so that minimum effort was required on my part and that hopefully I'd feel able to manage to be there.

I must admit, I still had reservations, but after my successful day at my friend's daughter's wedding I felt I'd probably be ok.

I'd be lying if I said I wasn't tired this morning, but I'm definitely not 'wiped out' and I actually feel pretty good....I slept really well too!

I felt really privileged to have been invited along to be part of this special day and I brought home some beautiful memories.

Sophie would look good in a hessian potato sack! 😄 but when I saw her in the dress she finally chose, I did shed a tear. She looked simply stunning and so beautiful. I know she will take my son's breath away completely when she walks down that aisle.

I'm so glad I managed to allay my fears about whether it would be too much for me or not. I could so easily have missed out on a really beautiful and 'bonding' day, but with some careful planning and the love and understanding of Sophie and her mum, I was able to enjoy something that I wouldn't have believed possible.

I know we all have to be aware of our own individual limitations with PMR/GCA, and it's not a disease where it's ever sensible to 'push' yourself further than you feel you're capable of, but that doesn't mean you can't try gently testing that boundary sometimes by dipping your toe into something different as I did. It's amazing what we can achieve if we're sensible and maintain realistic expectations.

I'm never going to run a marathon, but I know I'm getting stronger.....it's not happening fast and it's sometimes 'two steps forward and one back', but it's happening, and I intend to focus on that and nurture it.....slowly, gently and with patience and gratitude.

[Koalajane]

That is so lovely. I am really pleased that you were able to join in the dress choosing. You have a wonderful daughter in law to be who clearly adores you too.

[Kendrew in reply to Koalajane]

I'm very blessed, and I certainly don't ever take it for granted.

[Dontwannabesick]

How lovely. You're going to have a great relationship with you DIL. Enjoy the big day!

[Kendrew in reply to Dontwannabesick]

Thankyou.

[Maisie1958]

Lovely to hear, so pleased you had such a good day. It sounds that Sophie and her Mum are going to be fantastic and caring members of the family 💐 PS well done husband too x

[Kendrew in reply to Maisie1958]

Hubby still doesn't always 'get it' but he tries really hard. That's all I can ask.

[MrsNails]

What a Fabulous Day 👰🏻 how wonderful they had made such provision for you to ensure you were OK 💕

I went Wedding Dress Shopping with my future DiL & we were sending Photos to Mauritius for her Mum to see 👰🏽

Do you always carry extra Pred with you on a trip like that? Take today easy & reminisce!

MrsN

[Kendrew in reply to MrsNails]

Morning Mrs.Nails,

I didn't carry any extra pred with me. It never actually crossed my mind! I'm currently tapering from 5½mg down to 5mg and it should have been a 5mg day, but I took 5½mg anyway. I'll definitely consider that in future though! Thankyou.

[PMRpro Ambassador in reply to Kendrew]

I never leave the house for very long or far without 24 hours of medication in my bag. You never know if you will be back in time!

[Kendrew in reply to PMRpro]

Good advice and duly noted.I always pack extra than I'll need when I go on holiday but never actually crossed my mind to take some with me on days out.

Thankyou.

[PMRCanada in reply to PMRpro]

Likewise, I carry 2 extra doses with me at all times. Never know when you might need it.

[PMRpro Ambassador in reply to PMRCanada]

There are rheumies who tell patients to carry 60mg in their bag all the time - just in case they get any signs of GCA. In the event of visual symptoms: Take the pred and head for a doctor ...

[PMRCanada in reply to PMRpro]

Makes sense! I definitely have a store of pred at home in case GCA symptoms emerge, but hadn’t thought to carry it with me. Especially with GCA, time is of the essence regarding treatment.

[bright-horizon in reply to PMRpro]

Wow, yes of course! I’m asking my doc for some backup right away.

[MrsNails in reply to Kendrew]

Never go anywhere without extra Pred - a couple of reasons

1. What IF you took a sudden dip?

2. What if you got delayed overnight?

Our friend PMRpro doesn't even go down to the village without her mini Emergency Pack.

I always have a box of Pred in my Handbag & one in the Car - old habits die hard!

I haven’t been too good of late & on Tuesday l took a very bad reaction following a trip to the Dermatology Clinic - to which there are two theories why - however l took some paracetamol as my head was pounding & an extra 5mg Pred before l arrived home - l was trembling all over & went straight to bed…….

I will be writing my Saga up in a day or two but it’s always wise to carry extra Pred!

I’m so glad you had such an amazing day.

MrsN

[Koalajane in reply to MrsNails]

Sorry to hear you haven’t been good. Hope you are feeling a lot better now

[MrsNails in reply to Koalajane]

Think l’ve got to the crux of it! Will write a post in a day or so xx

[Koalajane in reply to MrsNails]

As long as you are getting better,Just put a packet of 1mg prednisolone in my handbag to keep with me when out! Very wise words x

[Kendrew in reply to MrsNails]

Really sorry to hear you've had such an unpleasant episode. I hope things have improved?I've definitely taken on board what you and Pro have said and will make sure I always carry some medication with me.

I thought I was pretty sensible and organised but for some reason I've been completely oblivious to the need to do this!

[MrsNails in reply to Kendrew]

Having a child with severe food allergies makes you very aware what you need to carry always. Since the Epipen life’s been comparatively simple & he’s not my responsibility any longer (he’s nearly 40) but we never went out without the Emergency Bag - Prednisolone, Piriton, Hydrocortisone Injections & Adrenalin Injections & always knew his current weight! (1mg Pred per Kilogram of Weight!) it never leaves you……

[Kendrew in reply to MrsNails]

That's seriously necessary and I can understand why you'd pick up on the need to continue doing that for yourself.

[Grannymiaow in reply to Kendrew]

Me too, and very well done!

[123-go in reply to MrsNails]

You have been missed but always better to take a step back during the 'poorly' days. 💐

[York54 in reply to MrsNails]

Hope you are feeling a little better Mrs N xx🌺

[Bcol in reply to MrsNails]

So sorry to hear that you are having a rough time at the moment. I hope it all improves soon. Xx

[Viv54 in reply to MrsNails]

So sorry to hear this, hope your feeling better xx🌹

[Viv54 in reply to MrsNails]

I just can't believe I have never thought of this ! I went out with my family on Saturday and I'm going to my granddaughter,s graduation at the end of the month ! I will defiantly take a packet with me .Thank you x🌹

[MrsNails in reply to Viv54]

You never know what happens - unexpected offer to stay over? Flight delay? It can be anything 😘

[Charlie1boy]

Lovely post, and really pleased for you. We sometimes forget how kind and thoughtful other people can be.Paddy

[Kendrew in reply to Charlie1boy]

Very true.

[herdysheep in reply to Charlie1boy]

Completely echo that Charlieboy. Sophie is lucky to have you as MiL too, Kendrew. The caring and thought fullness goes both ways.

[Kendrew in reply to herdysheep]

Thankyou. That's most kind.

[123-go]

You'll remember the day for ever as being one of the most special highlights of your life. Your relationship with your future dil is strong and that's wonderful. How thoughtful of her to include you in the day with such careful consideration.Relationships are two way processes and it's clear that you'll be a brilliant mother-in-law to Sophie.x

[Kendrew in reply to 123-go]

Thankyou so much for saying that. I had some awful struggles with my own MIL in the early days and vowed I'd never behave like she did.

[123-go in reply to Kendrew]

As if you would! 💕

[Kendrew in reply to 123-go]

❤️❤️❤️

[Viv54 in reply to Kendrew]

That's sad, I have the same problem with my daughter in law, I am shocked as I loved my Mil. Your lucky I have missed out on so much with my beloved son .

[Kendrew in reply to Viv54]

My DIL is so kind and I know she will always be there for my son. During their 16yr courtship (they met at school when they were just 13.. ..they're both nearly 30 now!) they've already dealt with a lot. Josh has been made redundant THREE times! Every time she stood by him and helped him 'get back on the horse'. As a mum.....to know she'll be there for him when his dad and I no longer are, means everything. I know I'm very fortunate and I'm really sorry that things aren't as satisfactory as you'd like with your own DIL. Things can change though, and do!.... I had a 15yr toxic relationship with my MIL but the last 15yrs couldn't have been better. I think age and maturity worked its magic on both of us so I wish the same for you.

[jinasc]

Put this in your 'Jewel' day notebook.

My Mam did this and I asked her what were 'Jewel Days'. The reply was, the ones you never expected and will never happen again.

Needless to say I have a a record of my Jewel days and sometimes when I feel down I look at it and smile.

PS: I have never shared it.

[Kendrew in reply to jinasc]

I think you may have touched on this once before. I love that idea and I'm definitely going to do it.

[jinasc in reply to Kendrew]

Thank you. I clean forgot I had written it somewhere. i only told a very close friend about it two weeks ago, she has started a notebook and as she remembers past 'jewel days, not always with a date.

It is just when I see someone has written about a special day I think they might need a 'jog' in the future. I know I have and I smile.

[Kendrew in reply to jinasc]

I've bought a really lovely notebook today, especially for writing in my 'Jewel Days'. Thankyou for sharing such a lovely idea.

[jinasc in reply to Kendrew]

I had one on Sunday so in it went...............

I know in the future you will love sitting and looking back at what you have written.

[Kendrew in reply to jinasc]

🥰🥰

[bussell]

Definitely a Jewel Day. Hope there will be many more!

[Kendrew in reply to bussell]

For everyone of us hopefully.

[Mojobumble]

Fantastic ! What a great day and big milestone. Now your feeling a little stronger it bodes well for future carefully planned events. All the worrying and wondering for future events will hopefully not be there, or at least shortened. Great stuff !

[Kendrew in reply to Mojobumble]

Thankyou. ❤️

[DorsetLady PMRGCAuk volunteer]

That’s great, and what a thoughtful girl you have as a future DIL… and her mum of course!

[Kendrew in reply to DorsetLady]

I'm so lucky. Thankyou.

[Artandpoetry]

So happy for you. All those good vibes will be healing too!!

[SnazzyD]

So happy for you. Thanks for cheering up my Sunday.

[Kendrew in reply to SnazzyD]

❤️❤️

[Kendrew]

👍👍❤️❤️

[singingloud]

What sweet people you have in your life! Enjoy the memories and the wedding to come.

[Kendrew in reply to singingloud]

Thankyou.

[yogabonnie]

Well, that whole post just delighted me!!! I felt like I was along for the ride and magic. thanks!! so happy for you and what a wonderful DIL she will be!!

[Kendrew in reply to yogabonnie]

I truly love her so much. She's the kindest girl.

[powerwalk]

Excellent. I know the dread of having to do something out of routine! Sounds a lovely day!

[Kendrew in reply to powerwalk]

👍👍❤️❤️

[autumnlass]

What a really lovely post! I’m so happy for you Kendrew! Wonderful dress rehearsal and an even more spectacular day to come!

The family support was great and you deserved and needed that. Well done! 🥰🌈🙌

[Kendrew in reply to autumnlass]

Thankyou. It's definitely given me a bit more confidence to do a little more, but only with some good planning in place.

[autumnlass in reply to Kendrew]

I know how you feel. I did a small trip by train and stayed away 3 nights in February - it was a big mistake and set me back to the starting dose of the PMR of 15 mgms in February, and I had successfully reduced to 7.5 … and that was a struggle at the end of the reduction too. I’m scared to go anywhere at the moment as get tired so easily. I do push myself too much at times - and last week had another bloodshot eye and intraocular pressure was up again and now restarted drops for that! It jolts the confidence too. Never mind we keep b******** on! Beautiful day here in Suffolk. Had 20 minutes sunshine out in garden, and now indoors practising with my water soluble oil paints as it’s too hot out there!

Hope everything continues to go very smoothly for you. 🌸🌸🍀

[Kendrew in reply to autumnlass]

Pacing yourself and judging whether you can engage in an activity or not is one of the hardest challenges we have with this condition. Most of us have misjudged our capability level on many occasions but each time that happens, we hopefully learn a little more about the need to do a little less next time.

At the moment, I seem to be judging things quite well but I'm still mindful of not becoming too 'cocky' and thinking I can do more than would be sensible!

I'm so sorry your trip away didn't quite go according to plan. Maybe start with one night away somewhere not too far from home and see how that goes.

I had two weeks away in Cornwall last year but I time-tabled rest days in frequently and this seemed to work for me.

You'll find your level eventually.

You sound very relaxed and content today. Enjoy your painting.

Where abouts roughly are you in Suffolk?

[autumnlass]

Thank you for your nice text … you’re absolutely right in what you say. PMR started in July 2020 and was feeling quite upbeat .., until about June 2021 had loads of kidney infections leading to A/E in August and had a urethral stent in place and then laser fragmentation of the stones which were causing all the problems. Then eye problems started in January - long story with eye bleeds but fingers crossed will see eye consultant in 4 - 6 weeks.

I’m really pacing myself now and lots of self care. I have oil painting class tomorrow so must do some homework!! I live in Woodbridge in Suffolk. Do you live in Suffolk too? 🌸

[Kendrew in reply to autumnlass]

You've certainly had a few challenges to contend with!No...I'm not quite in Suffolk. I live near Colchester in Essex, but it's only 15min drive to Dedham which is just over the county border. We were in Woodbridge for the wedding we went to.

That's a shame you're not a little closer.

[autumnlass in reply to Kendrew]

Yes it’s been quite challenging you’re right. It looks like I’ll have to have the current intra ocular lens replaced as it’s wobbling due to something called pseudo exfoliation syndrome in that eye. To put simply there little flakes that dislodge the lens and can cause glaucoma. I haven’t that but the eye pressure is raised. To lower this I have drops to put in twice a day. Another op will mean the lens will be replaced and sutured in two areas. It’s quite a procedure but the eye consultant is extremely good at Ipswich . The whole department has been terrific and very caring. It would be nice to say hello! Woodbridge is a lovely place to live but it’s been found alas and property prices here are mental!! Lovely to chat to you. 🥰 xx

[Kendrew in reply to autumnlass]

You too.🙂

[Jeannie29]

Lovely story, thank you for sharing 🌹

[Kendrew in reply to Jeannie29]

❤️❤️

[Paininthenck]

Thank you for sharing your lovely adventure. Made me really smile and made me me feel there is light at the end of this tunnel we just have to adapt. All the best for the wedding to come, exciting 😊☺️ Xx

[Kendrew in reply to Paininthenck]

Thankyou. ❤️

[lkcreedon]

That was lovely for you. So good you decided to go along. Well done you 💕

[Kendrew in reply to lkcreedon]

❤️❤️

[Jackeranda]

What an absolutely beautiful and inspiring story for those of us on own very challenging journey! So glad you had such a wonderful day, creating a lifetime memory as you went for you and your new family. Thanks so much for sharing it gives us hope 😀

[Kendrew in reply to Jackeranda]

❤️❤️

[Lonsdalelass]

Such a lovely account Kendrew! So glad you were able to spend quality time with your future DIL and her mum. The feeling of 'dread' about forthcoming trips and activities is all too common isn't it? I understand completely, as I'm sure we all do, about doubting our capabilities. I'm in the same boat coming up as we have booked a trip in August to see our son who lives in Hawaii, a 3 flight there and back with some long stopovers, long flights, not been before...the anxiety has started already but I so want to go and see him. However we heard just two weeks ago that one of the shorter flights outbound was cancelled so requested a change to earlier flight, (still waiting to hear a confirmation about this) then last week heard the longer flight outbound had also been cancelled so now waiting to find out exactly what is going on! Frustrating but I'm thinking...is this an omen?? I've recently got to zero pred (way hey)!! but still got some aches and pains, been 23 days now and counting, and taking anadin or paracetamol some days to see me through if I need it. Am thinking if I'm still at zero by August and we do end up going over to see my son, I can take a few pred if necessary to see me through the journey. But am anxious about it all if I'm honest. Your post has inspired me, thank you for posting. X

[Kendrew in reply to Lonsdalelass]

I think your trip is going to be significantly more tiring than mine but all I can advise is to plan, plan, plan! Make sure you can rest when you arrive at your destination and rest as frequently as you need to so that you can enjoy the activities that you do join in with. I can't advise you with any authority on the issue of pred but I'm sure others who can will do so if necessary. I hope you have a lovely time and try and look forward to it being positive and prepared.

[York54]

So glad your day went well . 🌺🌺

[Kendrew in reply to York54]

❤️❤️

[Viv54]

So glad you had a wonderful time ! Your post fills me with hope, i know exactly what you mean with "2 steps" been there so many times atm ! Our granddaughters graduation is very soon . My daughter has mapped out a similar plan, so step by step i will be there . So happy for you. Best wishes Viv.🌷

[Kendrew in reply to Viv54]

Thankyou.I'm sure you'll have a wonderful day at your daughters graduation... particularly if you have helpful plans in place. It'll be lovely

[Viv54 in reply to Kendrew]

Yes it will, it's my granddaughter 😊

[Kendrew in reply to Viv54]

Sorry....I thought I'd put grand daughter! .....predictive text interfering maybe??? 😄

[Viv54 in reply to Kendrew]

😀

[2Yellowdaffodilsx]

Wow Kendrew what a fab day!! Well done!! I'm soo plsd you made it! Just had to reply as I had a theatre trip with my daughter in March took my wheelchair train staff put me on & off. Taxis rollout the ramps so we arrived at the Playhouse Theatre in style! Eddie Redmayne was terrific! So it can be done. Roll on the next trip! Determination & forward planning allows us with PMR to enjoy special occasions. We went to a Wedding yesterday v tired by the eve but a super day! So start getting your outfit together & enjoy every moment. My hub too finds life tricky but we re a team & jog along somehow. Thankyou for sharing your very special day. Inspiring!! Xx

[Kendrew in reply to 2Yellowdaffodilsx]

Lovely message. Thankyou. It's important to embrace the things we can still do and sometimes that needs to involve a little imagination and organisation to make it all happen.

🙂

[2Yellowdaffodilsx in reply to Kendrew]

It certainly does! My aim is keep life as normal as possible theatre trips my fav along side meet ups with friends & family in Gdn Centres etc. All so uplifting forget the pain. Life goes on! Aft a long career with children I was in my element at the Wedding soo many babies & children! Enjoy your new to be DIL. Fab!! Xx

[Kendrew in reply to 2Yellowdaffodilsx]

❤️❤️

[Skysey]

So happy for you that you experienced such a wonderful day. We can never get these special moments back if we miss them, so it’s important to carefully and sensibly plan these events and go for it! You have such a caring and respectful daughter in law to be.

[Kendrew in reply to Skysey]

Thankyou. 👍❤️❤️

[Tinasleepyhead]

How wonderful what a heartwarming account of an amazing experience, so happy for ypu, thank you for sharing 💕

[Kendrew in reply to Tinasleepyhead]

❤️❤️

[Elor]

What a lovely uplifting story!

[SheffieldJane]

What a wonderful day and a lovely family your son is marrying into.💝

I had to turn back from a long planned event in London recently, because the queues were so horrendous. It would have involved a lot of standing. I had travelled to London wearing trainers with a built up sole that felt initially really comfortable. Upon reflection, I think this was the straw that broke the camel’s back. I was standing and walking at a different angle, using different muscle groups and this resulted in extreme foot and leg pain when I wore yet another pair of unfamiliar, but sensible, shoes on the day. Just a word of warning, our muscles can be very unforgiving. Everything was paced and planned except footwear. I should have tested them out more in advance of the outing. Baffling!

[Nextoneplease in reply to SheffieldJane]

I’m sorry you had this experience SheffieldJane. I know how you feel. My painful arthritic feet and weak muscles mean I’m only really comfortable in Skechers Memory Foam trainers. I’ve given up on other footwear but I have to say that makes planning any outfit super difficult. I tend to major on colourful jackets to try and distract from the shoes!!

Going to a 70th birthday bash soon and the same issue will arise…..xx

[PMRpro Ambassador in reply to Nextoneplease]

If Kay Burley can wear trainers with the business outfit to do her programme in the studio ... (Broken toe I gather ...)

I like wide dress trousers that cover the footwear if necessary.

[Nextoneplease in reply to PMRpro]

True….. but Kay Burley is also thin as a stick, manicured to the nth degree and is in control of her brief! The shoes can be regarded as an eccentricity in her case 🤷‍♀️

[PMRpro Ambassador in reply to Nextoneplease]

I work with eccentricity - we're old enough to get away with it. One of the things I learned living in Germany was that having comfortable feet is more important than what height the heel is. Another was that having friends over for dinner doesn't mean you have to kill yourself pretending to be a Cordon Bleu cook. Good plain food that wouldn't spoil (no souffles) was all you needed. And takeaway pizza was fine too ...

[Nextoneplease in reply to PMRpro]

That’s rather my attitude too these days - it’s more hubby who likes to try and keep up the old standards - but even he is having to cut down on the fuss and bother a bit!

PS I used to make a mean almond soufflé, though I say so myself - but that was way back!

[PMRpro Ambassador in reply to Nextoneplease]

Ooooh - that sounds good!

I really have almost forgotten how to cook - when we had visitors here we often went out or got pizza. Nightmare if both daughters are here together - one wants all her favourite childhood German food, the other is vegan! Often 3 separate meals being created in my tiny kitchen space!

Cooking for one is purely convenience and quick - all cooked from scratch but very Italian - salad or roast veggies and plain meat or fish and have got one tray cooking down to a fine art - veggies in the bottom, fish or meat on top, half an hour in the oven. Unless it is steak when it is shown the frying pan briefly. If prep takes more than 10 mins, not interested!

[Nextoneplease in reply to PMRpro]

I think your cooking sounds great - Italian is my favourite 😊I’ve spent years making spaghetti puttanesca, carbonara etc but even they can now seem too much (and full of carbs).

I used to really enjoy cooking, roasting things like partridge at Christmas, making my own Christmas puddings and canapés…..

Now I find the practical and tasty options include tray bakes and batch cooking and freezing of ragu and stews. Just make cakes and puddings with the grandkids 😊

Now off to make a fish stew with leeks, peppers and lentils that will last us two days….feeling quite encouraged xx

[PMRpro Ambassador in reply to Nextoneplease]

Now you could email me enough for lunch - love fish stew! I was doing a study of the fish stew offers in the resort where we stayed in Malta

I used to do a full English xmas dinner for 30+ once upon a time! Wouldn't do it for 4 now!

[Nextoneplease in reply to PMRpro]

It’s like falling off a log PMRpro 😊 I’d email it to you if I could - perhaps 3D printing would help?!?

Yes, big roast meals are currently off the agenda - but it’s nice to think we did it once upon a time…💪xx

[PMRpro Ambassador in reply to Nextoneplease]

Just had a look at a recipe that sounds almost acceptable in terms of "stuff" - suggests using halibut. Which I get half price most Saturdays in the village shop!

[Nextoneplease in reply to PMRpro]

Go for it! I buy fish when I see it, and freeze it if necessary so I always have some in

[Longtimer in reply to PMRpro]

OH has just chopped loads of veg, traybake today with chicken on top.....how lazy am I, but it's healthy I tell myself....

[herdysheep in reply to Nextoneplease]

😂😂

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

Probably got outfit sorted already, but floaty skirts are fine with flat shoes as already stated....

[PMRpro Ambassador in reply to SheffieldJane]

Why baffling SJ? Any change of footwear heel height will do it.

I wear flat shoes, Goretex trainers if wet, winter hiking boots withnon-slip soles of there is snow or ice to contend with, and from April to November sandals, with socks if cold. Any other option is purely decorative ...

[SheffieldJane in reply to PMRpro]

A first experience for me. The shoes were flat and wide, comfortable in themselves but they seemed to throw my whole body out somehow. I was embarrassed trying to climb in and out of taxis. Perfectly fine now, back to bare feet or favourite well worn plimsolls.

[PMRpro Ambassador in reply to SheffieldJane]

But there is flat and flat - and even half a cm is enough to upset your back!

[artfingers in reply to SheffieldJane]

Yes, I've found it is crucial for me to pick well worn in shoes on adventures. Switching to sandals at summer (with built in inserts) I take it a little bit at a time. I've also found it hard to stand for long times and when chatting, I'll find a spot to sit when out and about. Running, sadly, is now completely out. I miss it terribly.

[Kendrew in reply to SheffieldJane]

That's such a shame and must have been so disappointing for you. Footwear was actually something I had thought about.....just in case the 'plans' were scuppered in some way and I needed to walk/stand for any length of time. Trainers were my footwear of choice and thankfully ok. It's also fortuitous that trainers with dresses are highly on trend at the moment! 😄

[Nextoneplease in reply to Kendrew]

And yet they still look frumpy on me 🙄xx

[PMRpro Ambassador in reply to Nextoneplease]

So what?????

[Nextoneplease in reply to PMRpro]

I know, I know….🤷‍♀️

[Longtimer in reply to PMRpro]

I have worn Hotters for years, different sorts, but the heel height is what is ideal for me with scoliosis, and OA in lower back, won't try anything else....comfort every time....i

[Kendrew in reply to Nextoneplease]

Haha!.... oh dear.....I can't resolve that one but I'm sure it's not as bad as you imagine. I like these maxi dresses, but at only 5ft 3ins most of them are way too long for me. They seem to be made for women who must be at least 7ft tall!!😄

[Nextoneplease in reply to Kendrew]

I think that’s my problem, Kendrew…..at just under 5’ tall, I need something to elongate me a bit, and trainers just don’t do it 🤦‍♀️X

[Kendrew in reply to Nextoneplease]

My DIL is almost 6ft...as is my son, so I feel like the short, dumpy one in the middle! 😄 Being short doesn't come without it's challenges too!

[Nextoneplease in reply to Kendrew]

My OH likes to go to drinks parties - I feel like I’m surrounded by giants usually! Avoid them when I can, not because I’m anti-social, they’re literally speaking on a different level! 😳xx

[SheffieldJane in reply to Kendrew]

My trainers had a deep base, maybe that’s what did it. The queen cried off too for similar reasons. 😂

[Nextoneplease in reply to SheffieldJane]

Ah but was she wearing trainers?!?😉x

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

The only trainers she knows about are likely to be horse racing trainers !🐎🏇

[Nextoneplease in reply to DorsetLady]

Very true DL 🏇🏇

On another note - just seen on tv the Queen arriving at Chelsea Flower Show in a kind of golf buggy type thing. Well done to her, it’s a positive thing for all of us who struggle with mobility to see her accept what has to be done 💐💐💐x

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

Yes it is -I think she’s resisted as long as she could -but what’s good enough for HM is good enough for the rest of us!

[Nextoneplease in reply to DorsetLady]

Absolutely! 👏👏👏

[PMRpro Ambassador in reply to DorsetLady]

And the other way round ...

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

New shoes, wear them "in" indoors before going out in them on a new adventure - let your whole body get used to them, not just your feet!

[SheffieldJane in reply to DorsetLady]

Yes, I will know another time. My daughters have the same size feet as me, I think they may benefit from this fiasco.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

One’s loss, another’s gain! Recycling at it’s best 😊

[Predderman2020]

Excellent!!!

[Nextoneplease]

Lovely acccount Kendrew, I’m so pleased the day went so well 😊xx

[Kendrew in reply to Nextoneplease]

Thankyou ❤️

[Grantoday]

That was so nice to read. It brought a tear to my eyes. So glad you had such a great day . 😀

[Kendrew in reply to Grantoday]

❤️❤️

[MiloCollie]

What a lovely story ❤️

[Longtimer]

Wonderful....and having that day go so well, you have a lovely positive memory to call on when things aren't so g ood..... all helps. Hope the wedding is wonderful too....🙏

[Kendrew in reply to Longtimer]

Thankyou ❤

[Bcol]

A fabulous day and brilliantly planned by you and your family to be.

[Kendrew in reply to Bcol]

👍👍👍

[Hunter134]

What a wonderful inspiration you are to all of us.Iam so glad you had such a great time and was well worth the risk.Its important for us to put joy in our lives just as you did Big or small.The wedding will be beautiful ❤️

[Kendrew in reply to Hunter134]

Exactly! .....but you have to try to make the joy happen don't you.

[Hunter134 in reply to Kendrew]

That's so true.Iam in alit of pain but going for a drive with my granddaughter.I figure I hurt whether iam home or out

[Kendrew in reply to Hunter134]

I frequently find that any prevalent symptoms definitely seem easier and less noticeable if I'm distracted by conversation with another or I'm otherwise occupied.

[alvertta]

Such a wonder experience. Great planning.

[AyJayBass]

Kendrew - thank you for posting such an uplifting story! Arthur

[PMRCanada]

Wonderful outcome with advanced planning. You are fortunate that they “get it”. Gotta say I’m a big fan of “Say Yes to the Dress” TV show, so I’m patiently waiting for the day my future DIL shops for her dress (wedding is Sept/23).

Now you can look forward to the wedding day as well, assured that you can thoroughly enjoy the special without being wiped out.

We must do these things, make these memories to look back on with fondness and happiness. Participating normalizes for us, our abilities (which we sometimes question). So happy for you and your family!

[Kendrew in reply to PMRCanada]

Thankyou ❤

[PMRNewcomer]

You are so, so lucky. I have the DIL from hell. I wasn’t allowed to any wedding dress try ons but as a single person trying to keep a house going I was expected to contribute £1,000 and that was ten years ago and things just get worse and worse.

[Nextoneplease in reply to PMRNewcomer]

Oh dear, that’s such a pity, I’m sorry to hear that x

[Kendrew in reply to PMRNewcomer]

That's really disheartening and I really feel for you. I so hope something improves for you as it eventually did with my own MIL.

[PMRNewcomer in reply to Kendrew]

Thank you Kendrew but not much chance of that happening. Xx

[PMRpro Ambassador in reply to PMRNewcomer]

If she is still living it is never too late - my MIL was utterly poisonous (everyone else thought she was the ideal little old lady, white haired and curls) but in the last few years of her life she actually lived in a granny flat in our house and thought I was the best thing since sliced bread! Despite the fact I was the first person to say no to her - which had been the problem earlier I suppose.

[PMRNewcomer in reply to PMRpro]

No it’s not the MIL it’s my DIL although HER mother just throws fuel onto the fire but I have to keep quiet otherwise she won’t let me see my only grandson.

[DorsetLady PMRGCAuk volunteer in reply to PMRNewcomer]

That’s so sad 😞

[PMRpro Ambassador in reply to PMRNewcomer]

Grandparents end up in some hard places. Hugs

[Kendrew in reply to PMRNewcomer]

So sorry to hear that.

[bright-horizon]

That’s such a lovely story, thank you for sharing. Doubts, limitations, anxiety, Covid worries all contribute to making us something less than we expect of ourselves. So it’s just beautiful to hear how you pushed through that drab curtain into some sunshine. I feel encouraged and inspired!

[Kendrew in reply to bright-horizon]

We're often capable of achieving far more than we think we are, but with this disease it's so important to know and be realistic about our own limitations so we can factor them into any planning or organising that's required.

It's not always about big achievements either....the smaller achievements can also bring as much joy and fulfilment to our lives too!..... at one time, simply having a friend round for a cuppa and a catch-up was a huge achievement for me and definitely marked some visible progress.

Everything is relative to our circumstances at the time but I'm definitely learning that progress can be made with patience and understanding of our condition.

Onwards and upwards!

[bright-horizon in reply to Kendrew]

Yay!