Living well with SLE

[ForPsych73]

Hi. I’m a 46 year old Physician diagnosed with SLE about 8 months ago. I’m doing really well on hydroxychloroquine.

I’m passionate about living well despite a serious illness.

I believe good sleep and regular exercise has played a big role in helping my symptoms which was mainly debilitating arthritis & Raynauds

I get melancholic at times but exercise and focusing on positives and my faith helps.

What helps you cope with Your autoimmune illness?

[LupusKaren]

Welcome, I am sorry you have had a diagnosis of SLE, and admire your positive attitude.

Top of my list, and hope no offence intended given your vocation, would be a good doctor that listens. Sadly rare as hen's teeth it would seem these days, am fortunate I do have a good doctor who looks after my SLE.

I agree, exercise does help both in terms of physical and mental well being, personally speaking other health matters at best makes my exercise regime patchy.

[ForPsych73 in reply to LupusKaren]

Definitely! Having a doctor with empathy is very important! I’m a Physician but I always prefer a Doc.who has human empathy to one who has all the skill in the world!

I know how difficult it is to exercise when you have multiple health problems... what matters is not the intensity but how consistent... 20 minutes walking 3-4 times a week beats 2 hours if running once a month.

[LupusKaren in reply to ForPsych73]

Well judging by your posts Kike73, you are a very caring Physician, never ever lose that please. Your right about the exercise, and I do love walking, but confined to barracks atm due to a fractured spine, missed for a year on a CT scan, but that is a whole other story!

[Hidden]

I often do wonder if it's British/English medical school(s) that give future medical professionals that detached "mindset". I have seen articles on institutional racism in the British medical school system. Please keep up with the good work, kike.

[ForPsych73 in reply to Hidden]

I trained in Manchester, UK...though I’m not originally British. I guess some Drs are just over worked, stressed & jaded... and the British are not renowned for their warmth to start with! 😄

I think Drs May be forgetting that Medicine is a calling not a “job”... it’s not about the prestige... it’s about being serving & caring,

If your patient trusts you and feels you care.. 50% of the job is done... a lot of healing starts in the mind.

[Hidden in reply to ForPsych73]

YES!

[pmrkitty]

Welcome, you now belong to the club nobody wants to belong to. What helps me the most is my Husband and my Sister. I don't know what I would do without them. Good to have you here! It sounds like you're the kind of doctor I would love to have as my physician.

[ForPsych73 in reply to pmrkitty]

Thank you Klaroche! I’d like to believe I’m the kind of Doctor that a patient feels better for seeing. I’m a Psychiatrist.... the kind of Doctor that connects with hearts and minds.

I have always loved people which is why I chose medicine & then Psychiatry... I have also lived a life with its own shares of ups & downs which makes me able to relate well to the suffering of others.

I’m ashamed that anyone in my profession makes a person feel even worse after they leave their clinic!

Here’s to hoping that everyone here finds a great Physician.

[ForPsych73 in reply to pmrkitty]

You are lucky to have people that care! It goes a very long way. x

[Krazykat26]

Hmmmm..I'm not really sure about your user name..isn't that a reference to people who practise the Jewish faith..an insult in fact..as a sympathetic n empathic psychiatrist..could u change it please?

[ForPsych73 in reply to Krazykat26]

My name is Kikelomo..its a Nigerian name.. everyone calls me Kike..I was born in 1973...hence "Kike73" "KIKELOMO"means "A child should be cared for"... I love my name... I've used kike73 on many social media without causing any offence.

I've had that name for 46 years... I don't understand the Jewish reference you infer & I will never be the kind of person who will make hidden jibes at any race... If "sympathetic n empathic psychiatrist" is an attempt to shame me...I'm afraid it is lost on me..

[Krazykat26 in reply to ForPsych73]

Then I apologise

[ForPsych73 in reply to Krazykat26]

I like you already Krazykat! 😄 No apology needed.

[ForPsych73]

I looked it up! I never knew my name was used as a slur against Jews! ..Oh my word..will try to change it..so no one feels I'm being racist!

[ForPsych73 in reply to ForPsych73]

changed.

[Krazykat26]

Kikelomo is a wonderful name!! I'm so glad we have got that sorted out.

Hi ForPsych and Welcome

I agree with others that a good medical team is essential n I'm blessed to have a wonderful dermatologist n GP.

Also my family get me through the tough times n one of my best friends has MS so we support each other..she's been my friend for years when we were both much younger with children..n now we're nanna's with living with chronic illness!!

This forum is has been a lifesaver for me..I only went on the internet last year n boy has it made a difference to talk to people who understand n can relate..it's like a kinda cyber family!!

My exercise regime is very limited as I've become immobile in the past year but I do leg stretches..shoulder rolls..neck rolls etc to try n stop myself seizing up altogether. I'm also in training with some tins of baked beans to build up my biceps as I've got a new wheelchair which I'm unable to move myself at the moment.

Lupus has changed my life drastically n I've found it very hard to get my head around..I've had to grieve for the past n then get to know a whole new me..it took me a long time but now I'm heading in the right direction!!

Oh n lastly I will mention humour..I feel bereft when I temporarily lose it..I love a laugh!! 😹

Glad things r going well with the hydroxy

[sflynn84]

Hi! I think it is possible to live well with lupus. What amazed me was finding out how many people I know that have it as well. I think people are becoming more open about it, where as in the past they were afraid that employers may find out. In the beginning I was sick and also very depressed. Then my four year old asked me 'why are you always sick?' and I knew I had to pull myself out of it. Balance has been key, I work, exercise, take care of a two small children but I go to bed early and get enough rest. You have to listen to your body and not push when you feel tired, I prioritize i.e. what has to be done versus what can wait until I feel better. I am also fortunate to have wonderful doctors and have responded well to plaquenil. Keep up the positive attitude! That was one of the first things my rheumy talked with me about, he cautioned that if I became bogged down with the idea of having a disease and worrying about what might happen, I would make myself worse.