What the picture doesn't show: I got to my daughter... - LUPUS UK

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What the picture doesn't show

whisperit profile image
whisperit
β€’34 Replies

I got to my daughter's graduation this weekend. Hurray! Looking through the photos this morning, it struck me how much of our lives is under the surface - packed with miniature dramas that no-one else sees.

For instance, what this picture doesn't show:

- the weeks of planning and worry over what accommodation to book (can I get a ground floor room, will it be easy to get a taxi... should I up my prednisolone dose beforehand...what about the beta blockers...how do I book disabled seating in the theatre...what about a walking stick?...)

- the agonising as I was due to leave (can I really do it?...working out the timing of my drugs to fit with the journey...where are the possible rest-points on the way....any chemists...can I trust my phone...?)

- on the big morning itself...the desperation when not one of the four taxi firms I rang would accept my booking ("It's our busy time, mate, we don't take anything under 5 miles now")....the embarrassment of creeping at a snail's pace to the venue through crowds of bustling tourists and shoppers...the sinking feeling that I might not make it at all...battling the sensation of breathing through a bagful of cement...

- at the venue at last, struggling against waves of nausea and a splitting headache...looking furtively around to see if there was somewhere I could lie down...fumbling in my pockets in the vain hope that I had an extra painkillers tucked away somewhere....worrying that the video would capture my grey face in all its grisly detail....

- afterwards looking around for a seat as we stood in line for the official photographs....and on and on....

But it also doesn't show the kindness of the door staff who, seeing me practically crawling across the courtyard to the theatre, hurried out and led me gently to a disabled seat and brought me water, and the college porter afterwards who said, "Would you like a hand, sir?" and drove me down the padlocked service road so that I could (finally! after 3 years of failing!) get into a punt and be poled along the river like one of the bright young things from "Brideshead Revisited"...

Before I got ill, I used to climb mountains. Several times, I had hair raising adventures and once, caught in a blizzard on Mont Blanc, I thought I was going to die. But that half-mile through the streets of Oxford was as epic as any of those climbs. Although us in the lupie family often have limited horizons, we can have as much drama in our lives as the most dedicated extreme sports enthusiast, don't you agree? And I bet everyone here has a photo in their album that doesn't tell half of the story that lies behind it :) x

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whisperit
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34 Replies
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EOLHPC profile image
EOLHPC

GRRRRRRRREAT post...and YES, i TOTALLY agree...

LOVE the photo: CONGRATS to you both

πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜ coco

whisperit profile image
whisperitβ€’ in reply toEOLHPC

Thanks coco. One bright young thing and one rusty old thing...hope your adventures are fun this week x

nanagill profile image
nanagill

I love your post and you must feel a great sense of achievement having made your daughters graduation. Well done and congratulations to you and you're daughter :)

whisperit profile image
whisperitβ€’ in reply tonanagill

Thank you nanagill, yes, it was only the third time in two years that I have managed an overnight stay away from home. But obviously, nothing short of actual dying was going to stop me this time x

PMRpro profile image
PMRpro

Love it - and congratulations to you both!

Georgie-girl profile image
Georgie-girl

Well done to you, you must be so proud of your daughter and of your achievement. Congrats to both of you X

whisperit profile image
whisperitβ€’ in reply toGeorgie-girl

Thanks. I could not be prouder! x

Minnskimoo profile image
Minnskimoo

And so say all of us! πŸ‘πŸΌ

Well done! You made it -and look at your daughter - a picture of happiness.

What a sense of achievement-for both of you.

whisperit profile image
whisperitβ€’ in reply toMinnskimoo

Aw, thank you, Minskimoo. Like every parent, being able to support her is what matters most of all to me! x

Minnskimoo profile image
Minnskimooβ€’ in reply towhisperit

Without a doubt, Whisperit!

SjogiBear profile image
SjogiBear

What an inspirational post - thank you for sharing this with us and congratulations to both of you for your individual achievements. The life we lead with a chronic illness may not be the life we'd imagined for ourselves but we still need to live it as much to the full as we possibly can and if that means making compromises and adjustments, then so be it.

whisperit profile image
whisperitβ€’ in reply toSjogiBear

You're so right, SjogiBear. Thank you x

LouLamb profile image
LouLamb

Congrats on getting there .πŸ™‚πŸ™‚

whisperit profile image
whisperitβ€’ in reply toLouLamb

Thanks LouLamb, Hope you managing to keep up with your driving while you wait for you next lesson - "Getting there" in your own way!! :) :)

LouLamb profile image
LouLambβ€’ in reply towhisperit

When my aunties partner been driving I've been pretending in my head that I'm the driver .

Lupiknits profile image
Lupiknits

I was thinking of you! So thrilled you got there 🍾🍾🍾

Yes, I have a similar photo. It's a beauty, but mummy isn't resting her head on son's shoulder and he isn't holding her firmly around the waist out of simple affection. πŸ˜€

Congratulations πŸ’πŸ’πŸ’πŸ’πŸ’πŸ’

whisperit profile image
whisperitβ€’ in reply toLupiknits

Thank you, lupiknits. And my bottle of rescue water even made it into a cropped photo! x

Well done Mike I'm so proud of and for you and your very clever daughter!

However I disagree with you that it doesn't show - I can see it all quite clearly in your face somehow. X

whisperit profile image
whisperitβ€’ in reply to

...not least in the triple chin I have acquired in the last 18 months eh?! But thank you for your thoughtfulness x

β€’ in reply towhisperit

Heck its nowt on mine at that angle - and all I see is a proud and highly πŸ€“ looking man who has been through a great deal and the pride in your expression looks very hard won. X

whisperit profile image
whisperitβ€’ in reply to

Aww, that's the nicest thing anyone's said in years! xx

whisperit profile image
whisperitβ€’ in reply to

And ain't it true of you too - and everyone here - every small victory is hard won x

β€’ in reply towhisperit

Totally! I meet with the PhD supervisor person first time tomorrow after a very difficult weekend with my hubby away and dog - one of whom has separation anxiety. The efforts I've gone to so far in order to ensure I'll appear vaguely coherent are unreal! X

Loopydroopy profile image
Loopydroopy

Very well said!!

lonelyone profile image
lonelyone

Very touching, sadly true story.. Ty. Ox

whisperit profile image
whisperitβ€’ in reply tolonelyone

Thanks lonelyone. I'm sure you've had your own battles too x

misty14 profile image
misty14

Hi Whisperit

Clever post, your so right and nobody will know how long it takes you to recover from an epic trip like that!. Fantastic you made your daughters graduation !. Great achievement and proud dad moment for you. Good luck for your scan results this week. X

whisperit profile image
whisperitβ€’ in reply tomisty14

Thank you misty, I've managed to get a review with my rheumy this week so that is going to be interesting ;) Did you ever get your nifedipine situation sorted out? x

misty14 profile image
misty14β€’ in reply towhisperit

Hi Whisperit

Good luck for Rheumy appt, hope you get some more help. I've been put on a similar one Adalat retard. Tolerate it ok as its slow release. Just thought strange there should be a manufacture problem with such a general, well used blood pressure pill. Had no responses to that post!. Do you take it?. Meant to say loved pic of you both. Nice seeing faces to names. How's your mum doing?. Fingers tightly crossed for you this week. x

whisperit profile image
whisperitβ€’ in reply tomisty14

I noticed that you'd not had any responses. I don't take anything for my Raynauds; its a bit of a nuisance but not enough to risk another set of iatrogenic problems on top of whats wrong already! Clearly it is for you? Mum's in some pain, but OK. Waiting for a date for the colostomy op now. Thanks for asking x

misty14 profile image
misty14β€’ in reply towhisperit

Hi Whisperit

Glad your Raynauds isn't too much of a problem. Your right to limit what drugs you take. I hate taking all that I do and need something for my Raynauds as colour changes more severe!. Good luck for you and your mum. Tough time. x

whisperit profile image
whisperit

thanks x

Wendy39 profile image
Wendy39

Hello again. I'm never going to catch up on everyone's posts, too many by now. But I wanted to say what a lovely photo of you and your daughter. You look so proud and rightly so. And she looks so happy. We all know what you mean about the photo not telling the full story though. It's often the case for us, isn't it. The smiling and putting a brave face on every day is just the start. But you made it to your daughter's graduation, thank goodness. And you got to go punting at last. A day to remember forever. I am sure it was worth all the pain and fatigue. Are you going to get it framed?

whisperit profile image
whisperitβ€’ in reply toWendy39

Thank you, Wendy. As you say, I am sure that there are many here who have greater epics to tell - it would be good to hear them (and yours?). I'm sure I will end up with a bunch of pics from the day framed; it was pretty wonderful after all x

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