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.
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Kendrew
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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.
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
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.
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.
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 ...
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.
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!
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!
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……
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🌹
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
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 .
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.
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.
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 !
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!!
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. 🌸🌸🍀
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.
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? 🌸
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.
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
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
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 😀
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
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.
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.🌷
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
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.
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
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.
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!
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
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 🤷♀️
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 ...
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!
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!
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
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!
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 ...
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.
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.
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! 😄
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
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!!😄
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
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
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....🙏
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 ❤️
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.
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!
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.
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.
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.
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!
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.
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Highlight for me
Aunty Bees Advent Calendar . Dec 17. A Funny thing happened on the way to the Travel Tip Station . Quiz Answer for Which Metro Station ?
The loss of my beautiful lurcher girl. 
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