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LUPUS UK
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What the picture doesn't show - a year later

A year ago, I posted a pic of me celebrating my daughter's graduation from uni, and used that excuse to highlight some of the "invisible" things that go on behind the scenes for all of us with these illnesses.

This weekend, my daughter returned to recieve her Master's award and I was thrilled both for her, and because it would be the first time I would be away from home (barring hospital stays) since then.

But this time, there are no pictures. Because this time, I spent the entire weekend in my hotel room. Waking on the morning of the ceremony, I was gripped by agonising abdo pains that grew steadily worse. After two hours, I was curled in a foetal position on the bathroom floor. The ceremony came and went, then the college lunch. By this time, I was drenched in a cold sweat and retching with the pain. Dearest daughter, luckily, was spared witnessing all this, as she'd stayed elsewhere overnight - so she just got my apologetic texts.

The pain finally eased by mid-afternoon, but I was in no state to do anything but lie in bed till the next day.

I came home yesterday, feeling more depressed and hopeless than I have done since the whole malarkey started 3 years ago.

Yeah. So. No picture tells the story.

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Very much feeling for you whisperit: the unseen monster lurking within robs us of precious moments we'll never get back...but it can't take our feelings away, and I'm sure your daughter felt and feels your pride, joy and love however stricken you are. Love never ends xxx

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Thank you eekt,

I do believe that too. I don't think mine is a constructive post, but there it is. I might delete it in a bit, when I feel less like screaming x

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Those are burdens we all bear, and worth sharing, it lightens the load. Let's have a scream together xxx

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I'm screaming too xx

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Oh whisperit. So sorry that this happened to you. I know just how you feel. Something similar happened to me on my son's wedding day and I missed everything that followed the wedding breakfast. I know it wasn’t my 'fault' but I've always felt so guilty (and immeasurably sad) about that. And the horror - some probably assumed that I just had a tipple too many (oh if it were only that simple)...

Reading of your non-event makes me realise that I'm not alone in the 'missing-things' scheme of things and helps with the self-imposed lingering guilt...so please don't delete - sure there are others like us who will be helped by your honesty.

And sometimes, screaming out and sharing here really does help with the sanity...😱😱, so sending you companiable screams, warmest wishes and many hugs...

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Thank you Foggyme,

It must have been truly awful to miss so much of the wedding and it's so much the worse when it's so obviously the sort of occasion that only happens once, isn't it? As you say, it's some conmfort to know that one isn't the only one who has to learn to cope with these bitter disappointments x

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Quite simply hating you having to go through this sort of thing...hating that any of us have to endure this sort of ordeal...and we do: over & over, on & on. I’m in a passage of my own version of this sort of thing right now...which is so tough that i’ve hardly been here at all for ages...just barely managing with my own here & now...so reading your description means A LOT to me: we need to acknowledge & share this ultra dark side of our lives...just as much as we need to acknowledge & celebrate the brighter sides...so, thanks for digging deep enough to post so eloquently: means A LOT to others as well i’m sure...take care, as always, am right by your side XOXO

PS hope you won’t delete...

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Thank you coco,

You've always been brave enough to share your trials and it has helped many of us here. I really appreciate your thoughts and support x

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It’s mutual: the “intel” you share here is INVALUABLE..l and i always follow your responses: your views validate & reinforce mine..which i REALLY need cause, after a lifetime at ths dreadful “game” , MPTSD never stops my sense of insecurity about this stuff OXOX

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Hello Dear Coco so good to see you post. I hope your are feeling better soon. Lou xxx

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Thanks dear lou...wishing you the same...so many of us are having an extra tough time now...means a vvvvv great deal to even have this tiny bit of contact with you all...we keep on keeping on together XOXO

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We do indeed. xxxxxxx

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Oh Mike this is such a woeful tale of thwarted hopes - I’m so sorry. Of course your amazing daughter understood I’m sure.

Other torture pains we can mostly stagger through with help of aids/ props but gut problems not.

Any idea at all what brought this miserable episode of severe gut pain on? I’m just wondering about pancreatitis because I know that you had a GI reaction to Azathioprine similar to mine. I get a kind of ricochet now and again - more so after last weekend’s celebrations and extended family troubles.

It’s not a retching on floor thing again for me as it was with Aza - just a horrible upper abdominal rat gnawing nausea that comes after eating anything containing chocolate, cream or alcohol. Or with stress.

You will be feeling so abject and down I know. I can only offer you loads of sympathy and a large cyber hug. 🤗

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Thanks, Twitchy,

Yes, I know what triggered it off, but even after 3 years or more getting to know how this condition can work, the sheer intensity of the pain and degree of helplessness that it reduced me to was shocking. Thanks for the sympathy and hugs, they are much needed x

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Aww it’s hard Mike. I know. X

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Whispererit I have only just seen your post & felt really bad for your experience re your Daughters graduation. Don’t be too hard on yourself when you say you think that you know what caused it & I guess ate it or did it anyway & suffered incredibly.

We are all only human and I have had some of my severe allergy problems for 30+ yrs & still eat some of the things that I shouldn’t & suffer badly too. While the frightful problems & pain I am having is shocking I think “I won’t do that again this is beyond reasonable & you just feel like dying would be a good option at the time” some time in the future I do it again.

It sounds like you & your daughter are very close and I know she would have felt bad for you,

Take care,

Suzee xx

(Melbourne -Girl)

🍀🍀🍀🍀🍀🍀🍀

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Very honest description which has brought tears to my eyes. I remember your happy photo from last year when it really was a photo of an invisible illness. I really feel so much for you. By the way, you're a good dad for making sure your daughter's day wasn't spoiled. Brave and good xxx

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Thank you Lupiknits,

I really appreciate that; you're very kind x

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don't delete your post it's part of who you are and helps others know just how long term health problems can affect us all. I can sympathise with you totally on the gut pain as I suffered 7 years of something similar after my first gastro surgery for colitis. knowing what I know now about that surgery mine was probably caused by damage to my small intestine which upon healing itself adhered to my pelvis somewhere and then caused blockages in my digestive tract. this made me unable to eat or drink for 2-3 days each time until I eventually vomited food that had passed through my stomach [not recommended] luckily since I got my stoma last year I no longer get this but the pain was terrible. hope you are feeling a little better now.

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Thanks suzannah16

You must have been through very tough times. You are right that sharing these experiences helps all of us understand that we are not alone when we suffer. Thank you x

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you help me, i'm trying to help you. I may not be very good at it but I try ;)

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It’s a very constructive post. Driving us all to to find ways to overcome these hidden illnesses.

You must be so proud of your daughter. Best wishes Kevin

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I am prouder than I can say. Thank you for your support, Kevin x

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I really feel for you and yes I remember your pic looking so proud last year. The only positive out of this was that you had the courage to travel and to try !!! even though you did not make it. Remember you have been to hell and back so give yourself the biggest pat on the back . We are hear to share good and bad. I hope you are feeling less poorly now, Lou xxx

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Thank you Lou x

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Oh Whisperit , so sorry you missed your daughte r getting her masters degree.Its so cruel when our illnesses rob us of these precious moments we can't take back!. Please don't delete this post as its so important to share these moments as we all are going thru them and need to know we're not alone.

Are you sure you know what's causing those symptoms?. Is it the Adrenals?. Sounded very like kidney stone my dad had. Sudden acute pain, on the floor etc. These symptoms can be many different things as I'm finding out as well. I do wonder if you should have sought medical help then too as you were so bad!. Hope your seeing your GP soon!. Really feeling for you at the mo as we all are on forum!. TAKE CAREX

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Thank you for your understanding, as always, misty. I do know what precipitated the crisis - I didn't go to the loo on the day travelling up there. i.e. one day missing from the regular routine of pooing! But the effect was obviously way out of scale - no normal person has that level of pain and distress because a single day of "constipation". It just emphasised for me how fragile a tightrope we sometimes walk when we have these complex, longstanding conditions - even the smallest mis-step and we are thrust into a crisis. x

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👍👍👍👍 WELL SAID 👏👏👏👏

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The gut was one of my first places to be hit. I totally get what you are saying and yes the pain is off the scale !!!! I think the constipation along with the inflammation is awful. Travelling always caused me problems as it would kick in. xx

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Oh dear, sorry to hear you have travelled this road before too. My first gut issue was a sudden episode of proctalgia about a year ago. I literally collapsed without warning in a toilet with a sudden burst of excruciating pain, and lay there on the floor for about 40 minutes, barely conscious. A very frightening experience. Since then, I've had to be very careful about keeping regular. x

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I know this is sensitive stuff but I do thank you for sharing as you have just answered one of my puzzles. Several years ago I suffered the same which today you have given a name too, proctalgia. I have just read up and found linked to Gi stuff. Just goes to show we never stop learning. For me proctalgia stays away as long as on high enough pred. I have a lot of leg, foot cramp if not on pred. My worse proctalgia was 30 mins again very painful . xx

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What you say is so true. I bet when you look at pictures of yourself in the photos of important events you relate and remember that that was either a good day so that you could be joyful or a bad day in which you regretted that the time was tarnished by pain, nausea, or fatigue.

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Indeed. What hurts even more is knowing that I am bringing worry and inconvenience to everyone else, and spoiling what should be a completely joyful occasion. x

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But it isn’t you. It is your illness. Your family knows that. One of the most touching things I ever read was a friend’s essay about her beloved mother who had died of lupus before the better treatments we have now. She did not see her as an inconvenience but as the emotional rock of her life and example of human courage.

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So true and what a heartwarming post. Someone very dear to me once said "I do not see the illness just the person behind it" Meant a lot as look very different these days. XX

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Ahh .. love that.

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That's what I have to aim for! Thanks, Kayhimm x

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Oh so so sorry to hear this 😢 You’ve been through so much these last 2 years. I do believe that one silver lining in this horrible disease is that although we miss out on what we wanted to do/ be as parents for our children so many times, we have given them a great gift too - they are nicer, kinder and more resilient than those with healthy parents who take these things completely for granted. She is very lucky to have such a compassionate, wise dad xxx

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Thank you very much, Melba. I need to believe that a bit more x

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What a horrible thing to happen. I am saying prayers for you and your Daughter, hopefully she understands how much you wanted to be there for her special day. I hope you feel better, don't be hard on yourself, your mind was able but your body was not. Soft hugs to you!

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thank you for your very kind thoughts, klaroche x

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Arrgghhh!!!! (That's the scream in solidarity). I am deeply sorry that your uncooperative body prevented you from attending your daughter's ceremony. Your spirit so wanted to be there. You texted to keep her apprised throughout and it just was not to be. Remember, she is your daughter! I can only guess that she has a fraction of your compassion and that the apple didn't fall far- she knows that wild horses dragging you would have been less painful 😖. Thank you for sharing with us. I missed my son's wedding earlier this year because of illness 😞. I, myself am tired of the glossy exterior where we always have to keep our 'invisible' disease under wraps and put on a happy face about it. I'm just going to rebel and thank people for being kind and pay it forward--but no more glossy stuff, just the real deal! Thank you for being a 1st class dad and friend!👌🏿🥇Keep on keeping it real. Hope you are feeling better soon 🌞

D🏃🏽‍♀️

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Oh no, so sorry that you also missed out on such an important event in your child's life. That must have really hurt. I really appreciate you showing me the kindness you too deserve x

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Oh Whisperit,

How incredibly frustrating and sad 😔.

Thinking of you

X

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Thanks Ms,

Hope things are going OK for you x

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Unfortunately not but hey-ho!

Can’t say much at the moment x

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Bugger. Well, non-specific good wishes to you too x

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Dear Whisperit, what an awful experience for you I’m so sorry you had such dreadful and disabling pain that caused you to miss your daughters graduation. I can totally empathise with you, I’ve had similar experiences like you and one of those occasions I ended up staying in the hotel room on my own in pain! The disappointment and the guilt of letting others down and letting myself down is crushing. When it’s such an important occasion the pressure is on to be there, it can be a logistical nightmare just getting there, I envy those who just pack a small bag and jump in a car or on a train and go when for us it’s like a military exercise with having to pack a suitcase that warrants a small trailer on the back of the car!

You’re right, when you look ‘normal’ no one sees what goes on behind the scenes in order to get to where you are even if it’s just the shops! I’ve got to the stage where I feel very anxious when there’s any looming event that I have to go to because it is so much hard work to get there and get through it and I don’t know how to do it yet I desperately want to go but I want to be well for it and really enjoy it, not struggle through it! It’s so disheartening isn’t it that you got that far but couldn’t get to the venue, was the ceremony filmed so you could still see it?

My son has just finished his masters too and his graduation will be next June and I’m already trying to figure out how to do it, my daughter is about to have her first baby, my first grandchild and I need to be well enough to travel because I want to see her when she’s newly born, I spent all day yesterday in bed just to get to a drs appointment at 4!

Over the last 10 years or so every event I think about or photo I look at reminds me of how I felt on that day and the struggle that went behind it, there are very few where I think ‘ that was a good day’ they tend to be more ‘that was a nice day but.....’ !

In your reply to misty you say ‘how fragile a tightrope we walk’ and ‘even the smallest mis-step and we are thrust into crisis’ is very well put.

Sorry this is long but your post and others replies have really hit a chord so thank you so much for sharing.

Sending you hugs and good wishes...lots of them

Diane🌺🤗xxx

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Thanks Diane, This was the one outing that I had been working towards all year - my OT said she'd make it her personal mission to make sure I got to the ceremony. Well, I got to within 300 yards! Sorry that you've obviously been down this same road yourself; it's a hard lesson, but I'm so glad that I've been able to find so much kindness and sympathy from you and others who'd had to feal with the same, and worse, before x

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Hi whisperit

Your post is very moving and of course I can relate to the frustration and depression that follows when an engagement is missed. Friends are one thing..cancelling get together so or not going to a party..but when it's comes to family it's especially hard!! I will be missing my youngest daughter's wedding next year because there's no way I could go because of all my requirements!! I have only recently got the internet and I am sooooo glad!! Said daughter took me for a walk on the beach the other day via whassap..something I will never physically do but it was sooooo enjoyable. She understands that I won't be able to make it to her big day but I know that I will get to be there in a cyber sense coz I will see the videos n pictures, and of course we'll celebrate afterwards when she comes to see me with her hubby. Both of my daughter's now know that I have my limits and so do my grandchildren because we just get on with it..if I'm having a tricky (most of the)time then everyone knows..it's working out better because I was a typical don't let the kids know type of person.

I'm sure that your daughter understands..u made it to her graduation and nearly made it to her master's ceremony..and she knows how proud u are of her many achievements!! I didn't see your pic last year as I wasn't on here but my guess is that you still have it..look at it and see your proud dad face..you are still that proud dad!!! The slightest change in routine cocks things up constantly..it does get very depressing and then cyber helps again by us being able to help us chat to others..hurrah for the web thingy!! I trust that u made it back home and are now resting up..take care xx

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That's a cheerng reply. Glad you've got a more creative side than me, so I can steal your idea about using more techy solutions thanks! As you say, one just has to suck it up and get on with fidning ways round the problems. x

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Hahaha it's not my idea..I'm really quite slow on the techy front but the kids n grandkids are really good so they are trying to teach me!! But hey ho I've got plenty of time on my poor crippled hands. I do think it's great that we can keep in touch even if we can't make it physically x

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I feel you honey. I send you a gentle hug. I appear in so few photos the last 7 years, due to being too ill to go anywhere and then 5 yrs ago, losing the ability to walk more than 50 or or yards before being unable to take another step. On top of lupus and the many syndromes that it loves to give you, I was literally in bed for about a year. I couldn't do the 6 minute walk to my mums for mother's day, birthday etc. So no photos of me; my first years of being 50 + almost undocumented.

So what I do now is when I'm having a haircut, I put the slap on, dress in something nice and upon my return someone with a camera will take a photo of me, or several. Then I change my profile pic from the last haircut to the new one. I mark it as a "life event" that I made it out at all. At least now I am documented at least 2-3 times a year! I exist!

I am sorry you didn't make it to your daughter's event; it can't be helped, the timing is what it is. I am sure she understood; I think just the getting ready and travelling, even not far, makes you fret "What if I'm sick, can't get out of bed, what if, what if". Sadly sometimes the what ifs come true.

My daughter booked us 3 nights in a swanky, boutique hotel this past August, not far from home, but in the city. Unusually for the uk it was undergoing a heatwave. OMG when we hit the hotel (55 minutes after setting off) I was doubled over and had to rest under the air con but it was still in the high 80's at 8 and 9 oclock. I had hired a lite weight mobility scooter to get about and it was great, a bit bumpy.... The next morning I literally could not move a muscle; I was in bed until around 5pm. So, there are photos and I look unwell in most of them my smile on what |I thought was full beam. Tho I am covered head to toe, long sleeves, hat, glasses, long skirt the heat is killing me.

I kept the pix but am not showing them like on FB or anything, they are just for me and family/friends, who usually praise you for your efforts!. And at least you know you tried, you didn't totally give in and your smile stayed on, I hope.

I wish you well for your next "life event" even if it is just the hairdressers! It counts. xx

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Oh gosh, you really have been there and done it - many times over! How on earth do you get the strength? I'll keep your words in mind - although I havent had enough hair to trouble a professional for many years! x

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Wisperit, my heart goes out to you. How sad you had to miss your daughter's graduation day. Courage.... am sure you have much though.

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Thanks, JGBH, I appreciate it x

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Oh that's so sad. I am Lola and I really feel for you. Life is just so unfair sometimes. Please feel free to contact me for a chat, or just to have a good whinge anytime. I hope you have a lovely Christmas. Lola

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