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NEW VIDEOS!! YOUNG PEOPLE WITH LUPUS CONVERSATION (Diagnosis, Doctors, Mental Health, Social Media, Friends & Family)

Hello dear forum members,

Last month I filmed a conversation with beloved Barnclown talking about Lupus at birth, patient-doctor dynamics and self-management over the years. This month I sat down with my friend Daisy and we discussed being diagnosed with Lupus as teenagers, losing friends, impact on our siblings, social media - but our primary focus was on mental health and the ways multi-system disease really fractures our mind and spirit.

Here is the first video, discussing being a teenager with lupus, at school, impact on our families, especially siblings, and dealing with social media:

And here is part two, talking about mental health, being sent to psychiatric liaison, multi-system fracturing of our minds and bodies, trying to make friends understand our lives, changing benefits from DLA to PIP, job discriminations and finally, creative survival techniques - writing and cosplay!!!

We covered a lot in our two chats. I really hope some of or all of it speaks to the universal experience of our complicated lives with lupus or any multi-system auto-immune illness, young or not so young (even though we are all, obviously, eternally young!!)

Big hugs, Shaista (& Daisy)

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😍😍😍😍😍YAAAAAAAY!!!!

I think you & Daisy are WONDERFUL 🌟🌟🌟🌟

Am going to make sure my family & friends see these...THANKS so much...these will help so many

😘🍀😘🍀😘🍀 coco

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Oh thanks so much Colette - hopefully people are able to find these videos inspite of me not knowing how to tag different topics 🙈🀗 😘♥

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Thank you x

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You’re welcome!

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I thought about these videos a lot late into the night yesterday before finally dropping off to sleep...i was thinking: here i am @ 64 watching you 2 bright, articulate, creative, beautiful younger women with lupus... i’m identifying with you and i’m TOTALLY relating to your every word...and not just cause i too grew up with very early onset lupus (Shaista & some of you know, but here is some background: my suspicion is that my version was relatively mild until later life, compared to Shaista & Daisy’s...and my mother never told me i had lupus, so my diagnosis was lost when i moved to the UK @ 21)

I think the other thing that kept me awake last night is my feeling that lots of us here, as well as our families & friends, can connect with these videos for sure: because over the past 6 years here i’ve met many on forum who are roughly around my age and had versions of early onset multisystem lupus-like manifestations blighting their lives, but no diagnosis of lupus...i think my generation probably includes a much bigger cohort of relatively mild early onset lupus & lupus-like illnesses than has been recognised...possibly because more refined /subtle diagnostic tools were lacking until relatively recently

so back, say, in the ‘50s-70s, unless you were ‘lucky’ like infant-me-covered with lupus rashes & my desperately worried mother (ma consulted a sophisticated medic in new york city) you were simply treated for multisystem signs & symptoms individually, without medics suspecting, let alone figuring out, any underlying systemic cause...until progressive debilitation became so advanced & widespread &/or you were lucky enough to see an experienced perceptive medic (basically this is what happened to me in my 50s....and many others here on forum)

i’ve also benefitted by watching your videos, because you’ve helped me to what feels like a really important realisation about why the type of therapy practiced by psychosynthesis counsellors has helped me so much: because psychosynthesis made it possible for me to achieve the emotional/psychological synthesis which had been severely disrupted by an adult lifetime with my early onset lupus diagnosis lost..due largely, perhaps even mainly, to the divisive alienating effect inflicted on my psyche by the almost total frustrations & disappointments of trying & failing to connect socially with others due to my lupus + by the health establishment’s fragmented/non-holistic approach to care 🀷🏌‍♀...well, this interpretation works for me...and 🀔 think psychosynthesis has something in common with Daisy’s Cosplay 😆

So 😘Thank You Shaista & Daisy💐💐💐💐💐💐💐💐💐💐💐💐

Apologies for such a lonnnnng reply, but all this is close to my ❀

PS for anyone interested in learning more about psychosynthesis:

en.m.wikipedia.org/wiki/Psy...

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Thanks Coco 🊉 for sharing your thoughts and for the psychosynthesis link. I think incorporating counselling into our lives, as Daisy’s family did - her Dad is an NLP practitioner- has really helped them. Psychiatry on the other hand is a much scarier business when we are already mentally and physically fractured by the multi-system process. At least that’s how it felt to both Daisy and me.

Xxxx 🊋♥🍁

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Exactly...

I’’m with you & daisy. ever since my parents & school put me through a really scary university hospital psychiatric experience when i was 13, i’ve stayed away from official psychiatry. Once was enough for me!

Since then all my therapy has been private...i’ve been vvvv lucky to be able to click with several really good private therapists over the decades....which has helped me enormously. And i know others here who’ve benefitted similarly. We all do the best we can.

😘🍀😘🍀

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Coco that link was so o o o interesting as part of my OU degree I studied science of the mind so find this so compelling to read also having studied child development and Mazlows hierarchy of needs it all makes sense

Thank you once again wonderful lady💐💐💐🀗

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🙋🏌‍♀ YAAAY ☀ Am So Glad: your feedback & encouragement + validation mean a great deal to me! This is such a huge revelation for me @ 64...am pinching myself! 😘🍀🌻

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Hi louise-a just copying you into the comments section x

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Hi joannebond360 I wondered if these videos might interest you? How are things? x

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Thank you for posting this. Very good to hear from those who are younger and how Lupus and its issues effect them. I can hear that socially its tough and also frustrating not to be able to keep up. I agree "mild " can make things difficlut. You are both so strong and positive. Lou xx

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Thanks so much for watching louise-a - and for the encouragement. Will let Daisy know 😊

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Your welcome. Keep up the good work. xx

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Hi Hidden was wondering if these videos might strike a chord with your daughter?

And perhaps for you too Unf4bul0us imzi and Jyoti_Smith_1 - it’s such a lonely and strange experience being young with Lupus and trying to manage hospital life, doctors as well as social life and friends who have no idea how to relate to us. Hope something in these conversations resonates 💜

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Hello gorgeous Shaista! Love 💕 your videos, you have so much to offer and you give freely whilst struggling yourself on a daily basis. Your points are as always poignant and incredibly helpful to so many.

Love from your number 1 YouTube fan Mémé 💛🌟💖🌟💛

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Thank you so much for being my #1 Youtube fan gorgeous Penelope-Mary 😘😘😘 I love that you watch my videos and the vlogs - and that you comment! It brings you so much closer 🍁🌈💖

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You are one of those people who can instantly close a gap as large as the world 🌍 💛🇳🇿🇬🇧

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I wish I could ♥ this comment rather than just ‘liking’ it. I think that’s such a beautiful compliment - and I shall treasure it Mémé 😘😘😘

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Thank you for posting these. Its really interesting to see two different life perspectives and psychological reactions to the same illness. More research needs to be put into this area.

I thought I was the only one who thought about 'what happens if there's a war.

: 0

I'm posting from Australia - so there are some cultural differences at play but -

I can really relate to both Daisy - especially her desperation regarding getting medical help when we know were unwell. The cumulative trauma of the illness combined with the grinding desperation of presenting to different specialists - all with different opinions and 'sometimes' not very flattering or accurate reactions to the very trauma and vulnerabilities we present. Doctors seem to be consistently distracted by our emotional states at the expense of our disease.

I'm pretty sure there is mixture of sexism - ie ' The hysterical woman' syndrome' and psychiatric discrimination that we all have to deal with. Our trauma is a rational response and should be treated purely as one of cumulative trauma. A kind of PTSD without the Post in it.

Its a trauma that feeds a kind of a vortex. You present to a Doctor as anxious, they ignore what you say to them because they seem more interested in that - you become more anxious because you cant get help...... because you anxious. Multiplied this by a thousand and you have a very sick and traumatized woman. And when eventually you build up the courage to explain why you're traumatized in order to try and stop the vortex - they find it so hard to believe they think you're delusional. It cant have anything to do with them and they're behavior...... Its pure narcissism.

After a year of going into renal failure (with pathology showing this was the case) and probable pancreatic insufficiency and being unable to get help (During this time I'd been bullied out of my GP practice for attempting to assert myself) I was plonked in front of a psychiatrist as I was actually loosing the plot - but doing my best not to show it - as I knew it would get in the way of treatment.

This man was good enough to show me the letter he'd received from my Rheumatologist (saying everything was all anxiety) and very forcefully suggested I needed another specialist. A few days later I got an abrupt phone call from the aforementioned - anxiety fixated Rheumatologist saying I was going into renal failure......I asked him whether it was lupus - he said no....then hung up on me. Never heard from him again. Had to ring him constantly over the course of the next two weeks to extract a referral to a renal specialist. Of course it was Lupus. Not anxiety.

I've since gotten myself a new set of specialists and to my horror - the same dynamic is happening again.

...............

From my experience

unfortunately lot of psychologists - especially within the public system, but also the private, seem to be trained to come at trauma either too aggressively - which can make your already fragmented mind worse or - more often than not - they come with total ignorance of what where dealing with - even though we try to explain it to them. As said - people don't even take the time to google.

Some seem to think where anxious because a family member looked at us wrong when we where a toddler - or they instantly plonk an inaccurate DSM label on our head that' totally out of context of what the actual environmental problem is - and in our public system it makes it into our medical record and gets in the way of treatment.

Here - the public psychological services is no place for a dog. Unless your rampantly psychotic - people know to steer clear. God help people here with severe mental illness.

I had a complete moron of a woman diagnose me with a 'health fixation disorder' and advised me I should stop taking all my medications. Then she went on a letter writing spree to all my Doctors. When I saw her I was still battling renal failure and not absorbing food. Doctors are still believing her letters over my opinion that I'm very unwell right now. I've lost 25 kilos (thankfully I was fat) and because they cant figure it out - they're blaming me in all manner of terrifying and colorful ways. I believe they call this projection. If a Doctor cant figure it out - it must be the patients fault - not him and his perfectly intact - privileged ego.

Women have been vulnerable to this throughout history. Nothing has changed.

I'm actually considering contacting a Human Rights Lawyer right now. I've been at this SLE thing for forty years and I've really had enough of the fragmented and facile reactions to our illness and our plight.

I so agree with Shaista. Where dealing with a sausage factory and are essentially without a proper dedicated specialist to properly oversea our care . It would be lovely to have an all knowing - Lupus specialist - who would actually take the time to know who we are as humans, understand the sociological and psychological aspects specific to living with this illness and who'd know to instantly validate what where saying and act accordingly in an all encompassing way. Essentially - 'A Human' to share the journey together as apposed to the terrifying - fragmented computer blip - hyper - industrialized system where dealing with now.

Its totally inappropriate for Lupus Sufferers ! Most likely inappropriate for most complex illness really.

It would be so nice to somehow take away the grinding uncertainty in regard to what the illness may be doing, the uncertainty as to what bit of us the SLE could be effecting and wondering what the illness might do next. I can relate to Daisies burn out and not wanting to know. You have to take a rest from both the illness and the fight.

And of course threes always the grind of wondering whether the specialists are co-coordinating well - if at all. I know I've had to do this part myself for most of my life.

It is terrifying.

It is discrimination.

Again - Thank you for posting these videos. Keep up the good work.

x x

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😍 hi freckle! Am so glad you mentioned the “what about a war” thing...SNAP 😆before my lupus was finally rediagnosed, i used to frequently just worry about a war & my husband coping with his crohns....now i worry about me too 😬....can’t help it...my feeling is: this sort of anxiety is reasonable.....😘🍀

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Yep - absolutely. Things can change very quickly - indeed - overnight. We've been on the brink of a war in this region thanks to the old Trumpster. There are war ships etc. gathering in the south China sea right now - although things seem to be settling now - more a strategic act ?

This thing has always been 'very secret' subjective concern. I think without my med's I might go a little camacasee if there was a war/structural breakdown. I'm at that age.

And - I'm really surprised - it seems we have a better ability to hoard medicines than you. That must be really really disconcerting. My GP put a stop to my B12 injections - (because the levels were too high) but that alone has given me the heebie jeebies. We need a hell of a lot more control over our medications as well as our life.

I too have a chemist - break in plan. I thought I was a lone nutter on this one.

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Am TOTALLY with you on ALL this....am just as much of a nutter

🧞‍♂🧚🏻‍♀🧟‍♀👩🏌‍🎚👚🏜‍🔬👚🏻‍🎀👩🏌‍🌟👯‍♀ 🀞‍♀........Nutters United 🀗

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I've managed to con chemists out of B12 injecting syringes, and had nurses teach me how to do it on the sly. (due to past smaller battles)

I have a major hoard. Although I must admit, with the Apocalypse - I think I'd more probably just take to my bed. Too tired. But I've had the burglary plan in my head since being a youngster. (must be the ancestral DNA)

Without pathology I'd probably up the pred with a falling lymphocyte count - as I almost did recently.

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I am a bit of a hoarder too.

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I have the war worry too, it is so strange that we are thinking this way. I thought I was the only one.

As for your struggles with pychological services, words fail me as much as they failed you. Blinkered views and not at all helpful regards your physical issues. One area I really would like to see change and feel strongly about. As a women I feel at a disadvantage in this area. lou XX

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Thank you so much for watching and your comments Freckle1000

I actually looked up your post from last year, so I have some understanding of your own complex history with medical dehumanisation. I mentioned the rampant sexism to Daisy in our talk but didn’t want to force her into a line of discussion she isn’t quite ready/old enough to feel the full impact of. So I touched upon it a couple of times and then left it alone. The relationship between mental health and lupus is very much a direct consequence of psychological trauma imposed on us by mostly male figures of authority.

I was diagnosed with fibromyalgia by an Australian rheumatologist ironically enough - he put me on high dose painkillers and then it’s never been mentioned again, which is fine by me because I really dislike discussing pain with ‘pain specialists’ who are pain free themselves. I describe the pain specialist Rheumatology consultant as Smaug in my memoir 🐍🊎🐊

I think you should put your thoughts to paper officially as a non fiction essay and try to get it published - it is a very important area of research you are working on. ✊🏌💪🏜👏🏌

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Thank you for that Shaista,

Dehumanization is such a good word to describe this.

Sometimes I feel like I'm a lone satellite going on a deranged ramble with absolutely nowhere for it to land. Its the wrong side of midnight here, but I'll reply in more detail to you very soon.

Sometimes I regret posting that kind of information for the very reason you eased off on the sexism topic in your interview with Daisy. But I think its so important that as a group, Lupus patients be aware of the potential hazards out there.

Its a difficult path to tread without freaking everybody out and making things worse, especially when as a group - we're traumatized, exhausted and currently feel powerless.

Perhaps if awareness of this dynamic becomes more academically defined and obvious then things eventually might change. At the very least - Lupus sufferers could recognize the supple and not so supple obstacles to their care.

Sexism will not go away - just because its a new century. I remember a quote from a monk from the 12th century saying - surely in this day and age we can figure out how to stop war.

I've actually never contemplated writing an essay on the experiences I've had - but I am now ! Thank you for the suggestion.

To be honest, I think the testimonies of many - put into a massive research project would be a revelation that Doctors couldn't ignore.

I've studied (a tiny bit of) medical anthropology at Uni - but a lot of the newer literature I come across seems slanted towards the Doctors/medical system point of view. This definitely needs to change.

xox

ps. Its very interesting that an Australian Doc. gave you the Fibro Label. It does seem to be a definite plague over here. I'll certainly read your book !

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WELL SAID 👏👏👏👏

PLEASE DO WRITE THIS STUFF UP....and make sure we can get hold of it 😯

I consider myself FANTASTICALLY lucky to have avoided the b******t Fibro label 😏

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But Coco, Fibromyalgia is not a label - it’s a horrible condition. It made me suicidal at one point - because it is a cycle of nerve triggered pain you can’t escape.

I only survive it because of pain killers and sleeping tablets and concentrated mindfulness - but I definitely fear it.

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👍👍👍👍 Yes indeed, i know...just as IBS is a horrible condition...the prob is that too many of consultants slap the fibro label on patients willynilly and sort of leave them on the shelf “job done” 😡 because it’s “easy” to do...eg there are lots here who languished under the fibro label before finally have SLE or SS etc diagnosed. i’ve sadly heard this too often here...and watched superb lectures by Fibro consultant experts debunking that sort of sloppy diagnosing....after my 40 years in the diagnostic wilderness this sort of sloppiness gets my 🐐...

Eg my spine was injured by a ghastly childhood fall from height onto head...so that label was slapped on my case...and all my chronic pain + multisystem symptoms blamed on it for 40 years while i langushed on prescrip optiates & analgesics and meds like clonazepam + spine operations + self helping via meditation, alexander technique etc , while also constantly on next to useless prescrip NSAIDs...until FINALLY my lupus was rediagnosed 6 years ago...🀷🏌‍♀...now thanks to the right meds i feel less pain + more stamina & resilience than i have since my teens ... 🀔 go figure

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So true. Which brings us right back to your initial comments about psychosynthesis- and the very necessary quilting together of our minds, our psychologies and our pathologies. The necessity for the sisterhood across class and colour lines is real too! 😘😘🀗💪🏜💕🧜🏌‍♀🧞‍♀🙆🏟‍♀

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OOOPS...just added all that about my spine condition etc into my fibro reply...before i 😍found your reply...OMG I ❀❀❀❀ your:

psychosynthesis- and The very necessary quilting together of our minds, our psychologies and our pathologies

👏👏👏👏

AND also your words on sisterhood ✌✌✌✌😘🍀

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Ladies, ladies.

: )

Hello again.. I think there's a bit of both going on.

I am a sad history nerd - and I've read diary accounts of non damaging but debilitating pain in women that sounds very similar to Fibro. Unfortunately I cant remember what they called it (victorian era/I can look it up if you like) but I believe there is a condition out there that's very real. But unfortunately its currently defined as fibromyalgia.

The only trouble is the psychological assumptions that hover around this condition.

Recently I've developed some new neuropathic pain (amoung other things) and my poor bewildered specialist tried to prescribe pregabalin and asked whether i'd like to see a psychologist.

She's new and doesn't have much background on me - so I asked her whether she thought (all my symptoms) where fibromyalgia. I must have had a full on proper deranged look on my face because she quickly back peddled and said - oh no..no.no.no.....no. And then she proceeded to very quickly define fibromyalgia as women with a mixture of physiological pain symptoms and a certain cluster of psychological problems

My thinking is that the medical proffession hasn't contemplated that these psychological problems have everything to do with a natural reaction to pain and an inability to get a clear answer for it. ie - Its something women suffer from but is still very ill defined - so all the age old creepy assumptions slither in.

I've had specialists 'proclaim' that I have no capacity to understand the mind body connection when I - usually very clumsily (repressing a lot of anger) question them about fibro. This actually happened to me recently when I saw a neurologist. Apparently I'm too moronic to be able to define my own symptoms. And he was - without actually saying it - accusing me of having a conversion disorder. He said - This can sometimes happen after protracted trauma and illness - 'you poor thing...... you think you're still ill.... kind of reaction.

Good Flippin' flip...flip and flippin' heck. For once I was surprisingly eloquent - fought back and I had him - and a patient liaison woman sitting next to me in tears. But still I was unable to make him look at the new genuine symptoms I have. There was a major shudder in the end when I drew his attention to both a neurologist and a gastoenterologist who'd officially diagnosed autonomic nervous system damage via proper scientific testing. It was on my list/moblile medical file - but obviously not on the medical record. I provided phone numbers to these specialists and left it up to the neurologist to make the next move.

Stunned silence. The advocate said you're not going to get anywhere here - lets go. She was in tears afterwards. I had to comfort her as she asked - do you have a good GP ??!?!?

.................................

I have no doubt that with any neurological damage, this will be exacerbated by stressors. Subjectively I know with the new neuropathic stuff that this is totally correct. Same with my brother - brain damage/ tremor- contracted limbs. Much worse with protracted stress. And he's male.

..................................

I've just had a quick look at some of the research articles that 'A Rheumatolost' has still actually left on line.

One is titled 'Neuroticism in young women with Fibromyalgia links to key clinical features.

Another.

Psychological control is a key modulator of Fibromyalgia symptoms and commodities.

And he does mean - fibromyalgia patients can't control their emotions.

You really don't strike me as someone who is neurotic or unable to control you emotions.

He's one of the founding fathers of Fibromyalgia reseach and he's still at it. World renowned.

If you'd like his name. PM me. (I've forgotten how to do it)

And again - I have a sinking feeling that I shouldn't have shared. I don't mean to cause distress. He could easily just be a lone moron . But I tend to take him very personally as I've also just now discovered that he may have sent me for trans cranial stimulation for fibro research - He told me it was for a chronic balance disorder. This was while I was flaring/renal failure.......exhausted & at great expense. The testing had to be stopped as it put me in a massive brain fog for about three weeks. I was frightened I wasn't going to come out of it. And one of the trans cranial stimulating people told me - "it doesn't really work" go home.

.....you're right - I should write this all down propperly.

xox

again...apologies. This stuff is awful.

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👏👏👏👏this stuff IS Awful, YES, but we need to be 👁👂🏻🧠❀as Aware as Poss in order to get The Best Care in The Best if All Possible Worlds, yes?

😍 Thank goodness for you guys & this amazing forum 🀩

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Uuuah. I should be in bed.

There's nothing worse than a word like 'neurotic' - (apart from two choice - crasser variables that come to mind) Words that only apply to women.

YUK.

x

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oi.

Perhaps 'we' should start a Wikepedia page on all psychological/sociological manifestations of SLE. ? or am I dreaming. Probably not enough formal references at this stage.

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😂😂😂😂

Keep up your fighting spirit kerryn..it’s great you’ve connected with shaista...Am so weary & depleted after 64 years coping with these attitides...thank goodness Shaista and her generation are grasping the torch with all the Gusto they can summon up

👏👏👏👏✌✌🍀🍀❀❀

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I don't know how long I'm going to last at this fighting spirit myself.

I just weighed myself and was mildly freaked out - even though I'm shoveling the food in I'm still loosing weight so quickly. And I feel really well ?

Thank god I have a very good Gastroenterologist to see next Monday.

If not....... its a health commission plea for help/ complaint. I literally won't have any other option.

Yet again....... the symptoms are very weird.

xoxoxoxox

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😧 am so glad you’re seeing this gastro...please let us know how this goes...this weight loss is BAD....take care buddy

❀🍀❀🍀

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Good luck for your GSstro appointment Freckle. Keep us posted. I've been reading what you've written and been thru with these specialists!. Coco is right, we do need to know this if only to be aware in case it happens to us!. I've had specialists say similar things but not as bad as you!. I'm genuinely shocked . It's all credit to you that your not deeply traumatised by it all!. X

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Hi Misty,

Thank you for saying you've had similar experiences. Sometimes it feels like I'm the only one out there that comes across this sort of stuff.

Just back from a long haul to see the aforementioned specialist.

I'll reply as soon as I get my brain to work a bit better.

: )

X

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Hello again.

Just wanting to ask whether your'e well an ok.

Thank god......My gastro appointment was successful and he's doing some more thorough - but somewhat gruesome - investigations very soon.

He seems to be my only functional Doctor at the moment. Feel a bit more mentally secure due to things being tended to properly.

He even went to the trouble of explaining my what my current Lupus pathology results mean and why he's doing the tests. Its better for me if I can understand the current status of my pathology. Helps me feel more secure and in control.

X

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Hi freckle, thanks for your lovely message. So glad your Gastro appt went well and the Consuktant explained things to you!. As you rightly say helps you understand what might be going on!. Makes it less scary and if you want to ask me anything privately please do as I've gone thru a lot of the tests you describe!. Not pleasant!. Funnily enough on Monday I'm seeing my Gastro. He's fab too as they can be very tough!. I loved your reply on the depression/anxiety blog!. Could so relate and I too practise mindfulness as much as possible.It's helped me cope with having these illnesses!. I'm having an ECG on Tuesday as been having chest problems and had a fast heart rate for six months now!. Seeing my GP after for the results so it's tidy up misty week next week!. Keeps us busy doesn't it in a busy month for us all. Take care freckle , sorry your sufferingso much. X

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Hi Misty,

I really loved your open and honest reply to the the blog. I think I may have ended up being a tad too ponderous. Its a problem with me.

Thank you for your lovely empathetic reply. And with that fast heart rate going on all this time. So I'm really hoping you can get an answer and some treatment for that. It must be very disconcerting.

I've had some experience with the heart checks - heart rate stuff - but your problem sounds a little different to mine. Perhaps I could help you dodge some pitfalls in this area ? But so hoping you don't encounter any.

I have to admit - I've forgotten how to private message. I'm as vague as a doughnut.....doorknob - forgotten the saying.

: )

But if you want to - when your'e feeling better and 'only' if you're in the mood - I'd love to have a - probably - very slow chat. More like snail mail.

& Yes.....I think I'll be flat on my back and down for the count over the next week too or so too. And then Christmas.

: 0

xox

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Hi freckle thank for another lovely reply. I think we could help each other a lot. To private messageon here just click on my name on one of my posts and you'll see where you can send a message. Easy!. Ill let u know how ECG goes and GP appt. Gastro first as well next week!. Heady stuff!.

TAKE CARE, recover from your achievement and be in touch when you can , no pressure!. X

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How are you at this stage ?

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😆 🀪Watch this space....nothing is static, but: after 2+ years of MDT investigations into my sudden severe onset persistent abdo/visceral hyperreactivity/sensitivity flare, have finally got immunology & gastroenterology & my GP to acknowledge my hEDS + the inflammatory process of my SLE+ SS+ PID underly my lifelong mouth to a**s slow transit dysmotility /intestinal pseudo obstruction segue into intestinal failure.

We’re only treating symptoms, of course, but the combined therapy treatments are helping (inc increased immunotherapy meds...now being adjusted by rheumatology 🀞🍀✌).

Only prob: ultra low fibre diet No fruit & veg a must...only able to tolerate limited types of stodge...& protein i don’t hyperreact to is also v limited (ie milky stuff (cottage cheese, yogurt etc), eggs, chicken are almost all) for over a year now...under monitoring...trying to avoid segue into liquid nutrition/enteral/parenteral feeding...at least my care is all at the same univ hospital, with a leading Gastro “Multidiscipline Feeding Issues Team” 🀷🏌‍♀🍀

Will get back to you, buddy...am needing a nap 😘

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Don't worry about the typo's. I got it. I'll sleep on it too.

So very glad they're finally - at least listening now and you have a lot of good heads working together to figure it out.

xoxoxoxoxoxox

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😘Thanks...OMG has this taken sheer True Grit...don’t think i knew i was capable of summoning that up any longer...but good friends like you have helped A LOT...couldn’t have got here “so far so good” without you

Hope you get some decent ZZZZ

❀🍀

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Huge exact 'DITTO' right back at you.

X

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I always think back to those poor women being “studied” in those early days days of psychiatry...😖😔🀬

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Oh god yes. But I really think nothing much has changed.

I refused this neuro guy a neuropsyche assessment, even though I really am a bit vague and dotty right now. Essentially - knowing me, better that he does - I put this down to malnutrition - He noted some early physical signs of this with bruising etc.....and recorded weight loss over the last year but no advice or thought as to what to do about it whatsoever.

I felt like i'd fallen into a very specific research area - only in a neuro department as apposed Rheumatology.

His language was very 'specific'. Adamant is the only way I can put it. When I said I'd do a neuropsyhe test outside this particular hospital (with the closer to home excuse) - he said that wouldn't be good enough.

He may have meant well....but I was so sick of the dynamic and so not at all willing to have the test under his watch.

?

I might have been a touch touchy perhaps.

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Should I try and combine tragedy with comedy. Or am I being too ambitious. I want to get the full on - gothic message across but I don't want to repel people with misery.

A bit like the friendship conversation. Its hard to incorporate scary disease with friends and recreation.

Run away, run away.

xoxoxox

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😆😆😆😆

I’d like the gothic version NOW please, dearest kerryn 🧛‍♀

The MUCH NEEDED academic MUST be written too though ✌

😘🍀😘🍀😘🍀

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Have no regrets about posting the information Kerryn. The testimony you have - it’s worth its weight in gold. And actually when I say write your essay, I mean it because it is important that academics (who can often simply be a mirror to the medical branch of male or female authority figure) don’t steer the conversation away from the central focus which is us, and the totality of our human experience. So for example if an academic were to be interested in your testimony and offer to ‘use it’ in her paper, I would be very chary of that. At least until your version has been written and published somewhere - even if on your own blog/or forum. It’s important we own our own stories, and control at least the telling of our holistic narratives. That’s super hard enough itself! Took me four years to write my memoir!!!

(Glad the flood warning was a false alarm!)

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Yes. The warning lasted all of one minute. Woke up today to see half my driveway on the footpath. Must watch for weather forecasts. In fact I better watch it now and get off the computer. Impending tropical downfall would be an understatement. And we don't live in a tropical area - so the town/state is a bit panicked. My hoard is safe and - I may even water proof it.

: )

Thank you for that advice. I was wondering whether I should approach my old anthropology department, or the University attached to the Hospital where I'm going now. Definitely wrong.

Your'e absolutely right. Own your own information first - and I hadn't even contemplated the old - academic axe to grind - type agendas - let alone information being nicked. Its been a while since uni. THANK YOU !

And yes - If I do take to writing about my experiences - (I think I'll have to or my head will explode) It will have to be super slow because it's quite traumatic to dredge a lot of this stuff up (and like today - discover something new......

I'll start by reading what you've done.

What you've presented at this site is so impressive. You're a wonderful voice and advocate for this illness. And I barely know what a blog is - internet is relatively new here - so I'll have a look at yours. And at least I know I shouldn't start sentences with And.

I'll swot up.

xoxoxox

Time zone issues again.

x

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Also I’m feeling much better about the hoarding now 😂😂 thanks louise-a and Freckle1000

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Me too....you guys would love my stash....it’s the coamoxiclav & ciclosporin boxes that take up a lot of space, but they’re “worth it”...Oh the peace of mind 😇....i see myself as a sort if Midas gloatingly rubbing my hands together 😈 over this hoard.... but i do have to discipline myself to continually check expiry dates 😂

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Ha.

A bit of irony. Just checked my mobile text messages before going to bed. I missed an emergency flood warning that told me I must move to higher ground...... (it was eventually retracted as a false alarm) Slept through it all.

Don't worry. We'll all be too tired to notice the end of the world.

: )

Plonking.

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😂😂😂😂

👍👍👍👍

😘🍀😘🍀

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Dont know how I missed this!!! Thanks so much Coco for telling me it was here!

Daisy and Shaista, both totally inspirational ladies. You are heroines of the first order, fighting in a war for your own lives and you are both so winning.

Hope comes over in mega loads and I have nothing like the extent of suffering you have, but it is your fighting human spirit that makes you so special and blessed.

We have to cry and shout and scream at our illness but we also have the knowledge of the other side of the coin that the whole world rushing by totally misses in their self obsession.

You are very special Daisy in being diagnosed at such a young age but you touch on something precious , the joy that still can be salvaged when there seems only despair out there.

These costumes of Daisy's are amazing and the love and delight in your faces when discussing them was infectious. Reminded me how I feel about my knitting obsession and great love! I have been clicking away for over sixty years through lots of various traumas yet still get so much of a thrill in appreciating the textures and the colours of the yarn I work with. It always opens new worlds to me too.

Thanks to you both for sharing this with us. xx

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Thank you so much for your lovely comment cuttysark - I will copy your words to Daisy - she’ll absolutely love to hear the bit about you enjoying the cosplay section 😊

So glad you’re able to continue the knitting through the years of illness. Daisy is able to magically transform herself with each costume change - my mother was so in awe of her skills. It’s quite a lost art among our generation to be able to sew! A big hug, and thank you again xx

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Hi Shaista and daisy

I just want to say a huge thank you to you both for doing these videos and highlighting issues for people who were young when lupus struck!. We do encounter different problems!.

Message for daisy, six GCSE's after being so poorly is a HUGE achievement. I was similar age and although not as sick as daisy didn't attend school so reguslrly and I got six GCSE's too!. First year of them which didn't help either!.

I'm going to keep listening to them as can relate to so much so might pop up again!. Just wanted to thank you both and hope the wolf is at bay for you both at the moment!. X

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Thanks so much for your lovely response misty14 😘 I’ll copy and paste to Daisy who isn’t on this forum - she’s fantastic isn’t she?!

I wouldn’t say the wolf is at bay for either of us - not sure it has ever been at all!! Am in bed typing this - and I’m pretty sure Daisy is probably in bed some miles down the road from me 😂

Ah bed, how we love thee ♥💖💕🍁🌈

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Hi lupus inflight

Sorry to read your both still suffering so much!. It's a tough illness. Your both very brave and inspirational!. I hope you can perhaps pursyade Daisy to join the forum. It's wonderful to have younger ones on giving a different perspective and help and contributing to a great chat too!. Hope you feel better soon. I love my bed too, it's such a warm, comfy , restful place!. I too have had the disease mildly but very few good periods like some can have so agree with you about the difficulties of the 'mild ' label. I will listen to more of your videos. Thanks again so much for doing them. X

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misty14 Did you catch the previous two videos I filmed with Colette? Slightly different angle. Part I was about having Lupus from birth...

And part II was dissecting medi speak, navigating language with society and with doctors - such a tricky business explaining such multi system illnesses!!

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Hi again lupus in flight. Coco has very kindly sent me the links to the videos she did with you and then these with you and Daisy. I could relate to so much between you and coco that I wanted to but into the conversation!. I'd love to meet you all one day!. X

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Oh that’s great! Glad the conversations have that inclusive feel to them!!

Well, we are all ‘meeting up’ through the magic of the internet 🀗

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Oh lupus in flight isn't it wonderful, this is where forums like this are such forces for good. X

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Hello again Shaista and Daisy

I have listened to your second video and would like to say how much I admire both of you for your positivity and for creating a life despite really bad illness!. So inspirational you both are!.

Shaista, I must tell you that I too went to psychiatry because a trusted consultant of mine thought it a good idea so I went because I wNted to keep him on side but didn't want to go!. The lady psychiatrist I saw was very nice but concluded that I was doing such a good job of coping that there wasn't anything she could offer!. Do you feel that added pressure to do things that the doctors want because we need them more than they need us when it might be something we don't want to do?. Did you go?. Has it helped you being a writer, letting it out?.

A couple more thoughts for Daisy are that Amitriotyline for pain relief is a lower dose than for anti- depressive effects!. I expect you know this but I learnt it from my pain consultant that it has a ceiling of pain benefit up to 50 mg daily. No point taking anymore as won't give pain relief and more likely to get side effects she said!. . I'm so sorry she is suffering so much and do understand your thoughts about too many referrals but I do wonder about a referral to a pain clinic unless she's been!. I get huge help from one!.

I'm sorry too she is going thru mill of trying to get pip and lost her car!. Awful stress it is to people who have enough to deal with!. I was shocked at what she was told about wheelchairs at the assessment!. So cruel!. I'm sure your both aware thru Cambs lupus group that Citizens Advice will help with anything to do with benefits!. They will help with an Appeal. I hope she has sought help from them or another organisation and she gets it re- instated!. I dread doing the swap to pip but will go to citizens advice as they helped me get it!. Hope Shaista your not going thru it too.

Anything you want to ask me just pm me and thank you once again for doing the videos. So helpful they are!. X

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Hi Misty, thank you so much for watching the second video and writing us both lovely thoughtful comments.

I never went back to psychiatry - and have no regrets about that either!! Absolutely doctors make us do things we don’t want to or haven’t agreed to but are pressurised into because they have all the authority and we have none. Lupus and its treatment continues to be a great giant experiment - and we are the ones being experimented upon. I am being experimented upon even as I write this.

I won’t comment about Daisy here but I think she knows far more about the ins and outs of treatments and their unfortunate consequences than any 23 year old should - but that’s part of this chronic multi system life we all have to endure regardless of our ages.

Will keep in touch Misty - thank you again for your lovely support for our videos and our lives 😘😘💖💕

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Hi you daisy and coco should be so so proud of what you are doing to highlight this invisible decease that only we can see and feel I’ve just spent last two hours on YouTube going through all them thing and two of yous being so young I took not well at 40 and I couldn’t handle it so I take my hat of to you both and still with a smile on your faces I’m so proud of yous and thank you coz I’ve now looked at my first ever vlog lol 😂 x

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Thank you so much for your lovely comment Curly1430 and I’m chuffed I’m your first experience of vlogging! I hope to film another video at some point - there are so many of us living this strange, invisible life, with stories to tell.

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Hi I actually suffer from behcets but if you look it up a lot of what we all suffer is the same only thing is even less is know about it and dr are even worse at diagnosis you pushed from one to another like your a leper and they try to move you out the door for someone else to take your problems after watchin this last night I was so proud of yous the way yous conduct yourself and the two of you’s laughing and smiling away so thank you and I hope you tag me in your next vlog lol up until last night I cudnt of told you what that was lol 😂 take care and keep that smile on your face

Curly x

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😍 thanks very much curly for your 2 lovely replies! I know you’re right: whatever our version of autoimmune illness, we do have a lot in common. You’ve made my day 🍀😘

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