Done and frustrated: I’m just whining. I was sent... - LUPUS UK

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Done and frustrated

NeuronerdDoaty profile image
14 Replies

I’m just whining.

I was sent home on temporary disability until I get this flare under control. I don’t do stay at home well even when I feel bad. I never miss work. My research is important. Everyone is replaceable but my brain only does one thing well; neuroscience. I want my regular paycheck. I want my regular work schedule. I want my lab. I want to see how my patients are doing. How much am I missing? How much will I miss and be behind when I get back? I miss my ugly desk.

Okay I’m done whining. Ugh!!!!!

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NeuronerdDoaty profile image
NeuronerdDoaty
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14 Replies
AnIslandOfPeace profile image
AnIslandOfPeace

Oh my dearest Doaty. I'm sorry, sweet ma but you'll be just fine.

NeuronerdDoaty profile image
NeuronerdDoaty in reply toAnIslandOfPeace

Thank you lovely💛

Snapshot003 profile image
Snapshot003 in reply toNeuronerdDoaty

I am so sorry Doaty. How are you doing now? What techniques have you tried to ground yourself? Tayzer

Paloma25 profile image
Paloma25

I'm very sorry to hear this. I'm sure your desk, research, patients, and colleagues will be so glad when you return. It is awful not to be able to do what you love and do well. I hope you feel better soon. I had to give up my beloved job as a professor ten years ago, and still feel like a lost sheep. My health is a little better for it, though. I am happy that you have a chance to get stronger and go back.

Foggyme profile image
Foggyme in reply toPaloma25

So sad Paloma25. So sorry xx

Paloma25 profile image
Paloma25 in reply toFoggyme

So kind of you, Foggyme. So many of us suffer all kinds of losses, and I'm inspired and consoled here by people's kindness and joy in life. And the vitality of their rage about it all (thanks, Neuronerd).

NeuronerdDoaty profile image
NeuronerdDoaty in reply toPaloma25

Thank you 💛

Foggyme profile image
Foggyme

This is not a whine Neuronerd. It's a scream of rightful rage and pain against a loss that has been imposed on you by this nasty despicable unpredictable disease.

I hope you'll take heart from the term 'temporary' disability...this flare will pass (as they surely do) and you will return to your lab, your schedule, your research, your pay check, your patients...your beloved neuroscience.

And when you do get back, you'll be surprised how quickly you catch up and slip back into things...and conquer whatever awaits on that well loved ugly desk...one task at a time. One day at a time.

And yes...it's so frustrating if you’re a never miss work kinda person (that was always me too, before I retired - so I know exactly what you're feeling right now). It sounds like you're very good at the neuroscience you (and the patients too 😉). So just wondering if you could be persuaded to be 'good' at the Lupus you too. Rest, rest, rest....allow your body to heal...all with the greater aim of reclaiming your neuroscientist self, your rightful place in Neuronerd world.

In the meantime....hope you have good medical support to help you through this.

And if it all gets too much, pop back and have a rightful rant....'cause we rant with you too 😳💐💐x

NeuronerdDoaty profile image
NeuronerdDoaty in reply toFoggyme

You’re so kind. You truly understand. I love my ugly desk! I’ll try to be good to the lupus me. 💛

Roarah profile image
Roarah

I hear you! Can you partially work? Research only if patients are not allowed at this time? I have never taken leave with my illnesses. I feel staying busy actually has saved my life after last fall. My husband never took family leave for more than two weeks during his cancer treatments. He took one week for resection of rectal cancer surgery and another week for his reconnection surgery six months later. We are both doing so well now after very serious illnesses but rest had nothing to do with our recoveries.

Again staying normal is actually proven to help us live and heal better. Over resting is not actually the best advise and my husband's oncologists and my stroke team and rheumatologist all advise to stay as active as possible even with surgeries for lupus or cancers.

Now after major surgery the protocol is to get patients up and moving quickly afterwards and to not rest too much. It is called ERAS. Enhanced recovery after surgery. My heart surgeon made me walk with in an hour of recovery and I was only allowed to lie down at night. Had to sit up and walk within just hours of my surgery. It is the new protocol based on studies of faster healing and less serious complications after surgery in those who moved more than those who rested too much. Same with RA staying still worsens flares rather than help joints repair. So yes do not over do it but it is more important to not under do it medically speaking.

Hope the flare ends soon and you can get back to work ASAP. Xoxo

NeuronerdDoaty profile image
NeuronerdDoaty in reply toRoarah

Thank you so much Roarah. I’ve only ever taken time off for brain surgery. I came back early at that. Apparently my ‘falls’ were becoming an issue with Health & Safety. I agree 100%. I need work to survive. I go back to the doctor next week. I’m hoping they’ll let me come back with my mask on and at my desk at least.

MEGS53 profile image
MEGS53 in reply toNeuronerdDoaty

Hi. From experience, I understand the need work to 'feel alive' and to disguise pain at work by wearing a mask. I really do, BUT this can only go on for so long. I did this for far too long and ended up with total exhaustion (my GPs words). Please truly listen to your body, it will tell you what to do. BTW, what sort of falls do you suffer?

NeuronerdDoaty profile image
NeuronerdDoaty in reply toMEGS53

I’m unbalanced. I move too quickly not used to my hips and the quickness they’ve become weak. My head gets dizzy from my quick turns. I’ll fall but catch myself. I just have to learn to be more deliberate in my movement. I’m used to moving at Warp Factor 10. I have to sloooowww ittttt dowwwwnnnn!!!!!

MEGS53 profile image
MEGS53

Yes, warp factor <1.0 required!!! Please take some time for yourself at home. xxx

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