The funny side of lupus #17: Is when during a bad... - LUPUS UK


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The funny side of lupus #17

amandalilley profile image

Is when during a bad day...... you find laughter in the the darkness....

My eyes had got sooooo sore and tired, my amazing daughter brought me a small plastic bottle of optrex for dry eyes....Whats funny about that I hear you ask...

Well as you can see from the uploaded pic, its a small bottle, with a relative simple unscrew cap............FOR NORMAL PEOPLE!!!!!!!

My pain was so bad, I could not even open the dam thing

My daughters response, with a straight face was.......

Oh give me a break mum... anyone would think you are having a bad day!!!!!!!  Lol

We then both erupted with laughter as she pointed out that even as I was having such a **** day, the MOTHER LOOK, yes, mother look, came across my face instantly.....

Even in the depths of darkness and pain, there will always be a slither of light to hold on to.

May the universe grant everyone of you a daily dose of laughter even in the darkest moments. 😃💕👋👋

19 Replies

I get eye drops on script ! 

Thats good to know, thank you. X

Ask for sicca test , it's good to laugh , I have just been trying to self catheterises unsuccessful, try again tomorrow 😬

Oh sore eyes have nothing on that..

I would have to imagine the catheter as my ex husband in order for me to even attempt that... he was always trying to get where he was not wanted... lol 

Wishing you love and luck for success tomorrow. Xxxx

Hi shadow walker.... how did you get on with the self catheter today? Any joy? Hope it was not too uncomfortable for you. Let me know u r ok. Mandy. X 😎

Couldn't face it today , and have housing officers here tomorrow to see if I can have a bungalow , so am probably going to leave it till weekend , I am obviously doing something wrong , but it's not something I can get my head around at moment ☹️

Oh, I am sorry. I do hope it gets a little easier for you. A bungalow, thats fab, I am lucky enough to be in a wheelchair adapted bungalow for past 5 years. Best thing I did. I will keep my fingers crossed and ask the universe to send you positive vibes.

Take care. Much love, mandy. X

Do you have a bath or do you have a shower in your bungalow , I need a wheelchair outside but my spine is getting that if I stand or potter about to much my back kills me and a sweat or rather my legs sweat if that makes sence , 

Gentle hugs 

Chris xx

Hi Chrus.

There was a bath but my local gp persuaded the council  (I did have my own place before lupus) that it woukd be better in the long run to have a shower room.

Its only a small tray upright shower but has a wet floor and a specialist sit.

The illness is attacking my legs more now but they wont pay out for a full wet room, so am saving at the mo.

Hope this helps.

Much love. Mandy. X

Thanks my legs are bad do your legs sweat ? 

Not much, mine shake and I have what I call reverse leg syndrome.....which is where my whole lower half goes completely numb and I feel nothing until I remind myself that I do have the communication pathways are damaged and the wrong signals go to the wrong place.

I also get severe pins and needles a bit like fire ants I suppose.

Loss of balance becomes a problem and I tend to miss steps and fall, nothing like being embarresed in public... lol x

I have just been put on gabapentin for neuropathy pain , have you tried that , just up to 600 mg but it's taken two months to get to that GP wants me on 900 mg by end of month ! 

Ohhhhh lucky you, gabapentin - hallucinations, little green men, sickness and throat closing... allergic, yuk. Not for me but lots say it works well. Made me a zombie too. Def not for me. Best of luck, I hope it helps. X

I have had uforrick episodes , initially and the ceiling spinning and bad dreams so far and jelly legs ,   What are you taking for pain ? 

I dont take much as allergic to 90% of lupus drugs including amimoxicilian and traprathean.

4 lots of paracetomol a day

1 fentynol patch changed dvery 3 days 

Abstrol and oxycodine as breakthrough pain relief when hits 8 in lupus speak. Lol

2 lots of anti rejection drugs for my replaced kidney

Asprin daily

5mg of prednisone

Bioprisol for bp

Meditation, relaxation, music therapy, art therapy, rest, positivity and following the teachings of Buddha.

Thats it.

Attacks I follow my own triangle of care, intravenous paracetamol, gas and air to aid the chest spasms and morphine as a lasst result before a and e.

Taken many years of trial and error for me to find the right combination.

I am also vegetarian and avoid too much wheat and dairy.

Hope this helps. Hugs and love. Mandy. X

Thank you , I know I should go veggi it a work in progress , hydrochoquinne , 200 

Dulexatine 120 , folic acid , vit d 3,200 

Gabapentin will be 900 , cocodamol 30/500 x2 6/8 tabs daily , ranitatidine 1 X 2 plus gaviscon , ventalin inhaler , as when needed , eye drops , diflen spray and mouth wash , berconase nasel spray ,

Milk thistle , cod liver oil , a laxative should be up to 3 X daily usually 1/2 depending I am waiting on meds for upper intestine for non absorbtion issues , I think I rattle most days , I was taking aspirin because that worked a treat on my pain , but the consultants went mad with me , and told me not aloud 😕 

I stay away from processed food it really doesn't agree with me , consultant insists I have sjorgrens , raynaulds , Gilbert's , on top of sle , bowel ,bladder , and doesn't want me putting any extra strain on kidneys , I am starting to colour and draw again , I am hoping to start sewing and using machine to quilt rather than hands so if I can get the fatigue and stress levels under control , I should be laughing ,

Although I am going to try and sleep now ,nite nite 

Chris xx 😉

Exactly laughter such a good tonic for us all. Just a good job we can laugh hey ! 😃X

I use the antihistamine drops, does help ☺ 

Yes yes always laugh & that helps too ☺

Peace, Luv n light x

Love your posts, 😂😂😂😂😂💕👍🏼

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