The darker side of lupus #13 to ............

[amandalilley]

My deep apologies to all lupies that have been watching for my posts - it has been a while due to lupus fog taking centre stage and holding me down until I could go no lower...I have been in perpetual half darkness with not even a silver lining to bring me back from the brink....

It has taken a couple of days for me to pluck up the couarge and write this, unsure if its something any of you want to read....I really dont mind if you don't....but I need to air these awful feelings and emotions before I totally stop beliving in my ability to bounce back.

I am so tired of the endless round of tests, bloods, prodding, poking, changing meds, offering solutions that I have tried over and over again because the establishment cant be bothered to communicate with each other.

I am tired of being treated as a revolving door, a wack job, a drug addict, a hypochondriac....

I am tired of having my care plan, integrity and confirmed diagnosis questioned because of a complete lack of understanding by ill informed, arogant, self appointed drs, consultants, nurses and councillors whose only goal in life is NOT TO LISTEN and to tell me they know best and even though I live with this bloody illness and ALL its incarnations, EVRY MINTUE OF EVERY GOD DAM DAY, they know whats best for me...

I am tired of having to explain myself, my conditions and my treatments because I know my own body, my limitations and the treatnents that work for me.

I am tired of constant utis, constant cmv, constant incontinence (oh yes, another new symptom), constant chest, lung and transplanted kidney pain that is so crippling, that all I can do is curl in a ball and hope it passes, because my Costrochronditis is so severe that they have no answers.

I am so tired of being and feeling so ashamed of my illness that I have to be on my last ounce of breath and strength before calling for help, cause the last time I did, I was informed that IF A REAL EMERGANCY AROSE, THAT WOULD TAKE PRIOITY......

I am tired of pretending that I am fine with this illness, fine with my lot, fine with my ife having changed so much that even getting out of bed in the morning can cause complete exhaustion, fine with accepting the constant 24/7, 365 pain.

Tired of being the one that manages my illness through trial, error, pot luck, positivity, exercise, meditation, correct diet, resting, getting enough sleep (now thats funny! - when was the last time any of us slept for more than a few hours because of the pain) -tired of smiling and saying all is well just to keep people from asking me how I am

I am tired of the effort, planning, organisation and general hard work of going just on a day trip.....have I got...meds, insurance, pads, extra change of clothes, care plan, list of nearest hospital, nearest a and e, emergacy supply of everything because the day I don't, you can bet an attack happens - and yes, that happens........

I am sooooooooo bloody tired of being strong, of coping of greeting each new night or day with a positive attitude only to be let down by the constant guessing game that lupus presents you with on the spin of a penny.

In fact - thats it...... the answer is simple....... I AM JUST SO TIRED......

'NOTHING A GOOD NIGHTS SLEEP WONT CURE' as I was so reliably told by a so called informed practioner.....

So lovely lupies, thank you for allowing me this indulgance, I hope it helps you all with all those awful feelings and emotions that we go through and struggle with every day.

And remember..... apparently curing lupus is easy, you just need sleep....

Now where are my very large bottles of sleeping tablets????

Night. X

[EOLHPC]

It's so good to have you back telling it like it is 🌟🌟🌟🌟👏👏👏👏 have been missing you

Have been thinking along similar lines about my version of this stuff lately GRRRR 😤😔...your post says it all...and helps me keep my stuff in perspective

I wish all this stuff, all our versions of this, could disappear with waves of a magic wand...I've had a go, but my wand waving arm is getting tired and the results are unimpressive

for sure having a good blether DOES make it all more bearable...and your blethers are brilliant...on the light as well as the dark side

So, thanks Mandy 👍👍👍👍

And sweet dreams 😴💤💤💤💤...I hope you'll be feeling the light side moving you to post 🤗 again soon

🍀🍀🍀🍀 coco

[PMRpro]

Thank you - missed you too. Sorry it was such a rubbish experience in the meantime.

[Natura]

I am so sorry. I dont understand why this happens to some of us. I have low end, so I am able to deal with all this a little better than most of you. I do have pain though, a Clotting gene, scarred kidneys. I continue to push through it everyday. And if one more person tells me to stop being negative , and be more positive and good things will come to you....i just might scream in their face.

I had a rheumatologist tell me that I just needed to sleep too. I sleep 4 hrs, and wake up every night.

You have every right to vent. In fact, it is necessary so that you can continue fighting and living...

I hope tomorrow is a better day for you.

[amandalilley in reply to Natura]

I am afraid if I met your rhummy, he/she would not be a rhummy for long.....they make me soooooo cross.

I have passed the point where I lie down (metaphorically of course, cause we are always lying down.. lol, in fact we could add positions to the karma sutra... wait, whats sex again... lol) and take what the professionals say as gospel and research, talk, try, fail, research and find my own way by talking to the amazjng lupuues and associates around the world and report the professionals who treat me and my family and carers as though we are a pain in the butt because they have no idea on the complexity of symptoms, side effects or knock on diseases that lupus hides, plays on and explotes.

Omg, I am soooo sorry, that was a hell of a let go rant..... lol but boy I feel much better.

Hope it helped u 2.

Love as always

Mandy

[Kriss53]

Well said....I feel your pain, I get so annoyed as no one ever seems to know what to do...and sooooo tired, I can truly identify with your illness. Take Care x

[MrsMouseSJ]

Well, I had a good night's sleep and it's all still the same; don't know about you?....

I was both sorry and glad to read your post. Sorry, because you are experiencing this. Glad, to know that I'm not alone.

[amandalilley in reply to MrsMouseSJ]

Oh yes......I would like 'normal' people to survive for weeks on end with 3 hours sleep, work, bring up kids, run a house etc etc.....

Thats when u realise how strong you really are and you just need the occasional rant, someone to empathise and reassure you that it may be bad at this moment in time but there are people here for you, night and day, without predudice, judgement or ridicule.........

The professional could do with reading, responding and listening..... but hey hoy, theres that pig in the sky again..... lol

My love as always

Mandy xxx

[MrsMouseSJ in reply to amandalilley]

Ah, those flying pigs....

My very best wishes to you. Sarah x

[weg1]

Literally pants isn't it.

Not to mention the guilt, I cant win with myself, to tired to make small talk with friends and family, feel lonely and isolated. Bored of my own small talk, to tired to do anything interesting! Can we talk about illness and supplements again, not! When to take all these pills, Not enough meal times, awake hours and empty stomachs to have my much loved cup of coffee! so have it anyway then worry I'm not absorbing.

Got way to many chores and not enough spoons, over do it one good day and then have to cope with the guilt and boredom of the next few bad days. Then days pass, weeks pass. It's all is so slow and dull right now, hooray did the hoovering this week, I hate hoovering. Mowed the grass last week, damn it needs doing again and what is it with cleaning. I ache everywhere my head is thick, why are my molehills mountains? I can't get any cleverer at planning, no one well can understand that side of this.

I work full time, I am tired, bored, guilty and I think a bit depressed (under medicated) but i look well! I'd be a super model if i felt as well as people said I looked! I hide everything from everyone, I detest Dr's and don't want their pills or pity. I am self medicating and could do more, bored bored bored of this routine. i can do stuff but just can't.

Thank you for your words and reflections past and present. I'm here too, good and bad days x

Thought I'd try writing mine down to see how it looks, take my sups and up my meds and hope i feel better tomorrow.

Best wishes x

[amandalilley in reply to weg1]

I am so glad you have written what you feel, I find discussing with friends and family, you can feel like a broken record and I gain much strength and comfort from knowing that I do not have to make excuses here, I am free to express all the emotions without fear of reprisal.

I am so sorry you are feeling as low as can be, this illness can make the smallest of achievements seem like a complete waste of time, but they are not........ that 1 step forward of wrighting down how you feel may be the beginning of the light you seek.

It may not be the cure and I certainly dont preach but thank you, thank you for having the strength and courage to be honest and write what you really are feeling.

Talking to professionals is all well and good but not for everyone and can be very intimidating, embarrasing, condescending and humiliating, here you can write as you wish and get empathy, love, support and a sense of humour in a place of darkness.

Be strong, believe and take each day with a small step because every step is a step forward.

Much love

Mandy. X

[joanne27]

amandalilley

hey , its healthy for you to have this rant. We all feel very similar to this at times and from reading the other posts many of us share difficult times when it almost feels difficult to carry on.

I have the added complication of incontinence and that really tests your self esteem.By writing the post you are already addressing the way you feel so well done!Try distracting yourself with a good book, watching favourite films , or indeed anything that you really enjoy.I start to paint and draw when I feel like you do.Ok , so the pieces are not gallery worthy but they do take my mind away from the debilitating symptoms.I've learnt to be very kind and gentle to myself and when at my worse I take no notice whatsoever of others ignorance.Hope you soon get a little peace and respite ,JO

[pixiewixie]

Thank you amandalilley for putting into the written word so many of my thoughts and feelings!!

I listen, hear & appreciate respectfully what you portray from your courageous writings. Thank you!! Oh I so wish I had a magic wand, I would send peace & love to us all! Sorry, I am only a vulnerable human and will instead wish you a longer sleep, less pain & some empathy & understanding from 'the caring profession'. Also, a little more awareness from those who do not know how brave, stoic & (vulnerable) you are!

xx Pixiewixie

[Neriah]

Wonderful post. It made me cry because it expresses so much of what I've experienced in the last twenty or so years since being diagnosed. I've been comparatively lucky. I was diagnosed early and once I found my way to my present lupus clinic, feel I have had the best of treatment (according to certain specific lights that is) and have been shown understanding, compassion and also been involved in the development of my treatment plan. My erstwhile GP surgery was somewhat of another matter. Two comments I treasure:' I haven't got time for this, I've got a waiting room full of patients,' (I may have just overstayed my official seven minutes) and 'What do you want? I don't know what to do with you.' But to be fair, some of them did their best, as a practice they were under pressure and I may not have been the easiest of patients.

One thing I have found I have to deal with is my own Inner Critic - the one who says that I am just a Weak Character, who should pull herself together, try harder not make such a fuss, not be so selfish and self-obsessed, stop being a hypochondriac and think of others who are far worse off than me. There is another version of this critic who says that if I were properly Self Controlled and gave up gluten (despite not being diagnosed as gluten intolerant) dairy, meat, alcohol, became vegetarian (preferably vegan), took up Ayureveda, did more TaiChi, meditated properly(!) prayed more, thought positively all the time etc etc, then I would be able to solve all my problems. But as I'm a Weak Character...

But as I say, brilliant post

[les61]

You are allowed any indulgence you want. I am a new lupie although as I am learning it would appear I have had it for sometime having gone through so many tests that showed nothing so I was ok. It was only when I became UV sensitive, get skin biopsies and blood tests, hey presto I have SLE. Then packed out of the door with tablets all will be well. Ha I have been quite lucky as I have met a lovely person who also has SLE for over 30 years and she has been very supportive. I have also changed my dr. to one that listens and tries to help and is supportive at the moment.

I look forward to following your posts take heart and keep taking the tablets! xx