Right my first blog!

Right,

Hi, I'm Lewy, 28 year old male with relatively active SLE....I've had pretty much all the problems one would expect since I was around 13....rash, nephritis, repetetive infection, pericardial effusion (sp?) and all the problematic side effects associated with medications. At the moment mainly that of chronic steroid use...so I've developed cataracts, become osteoporitic and have struggled with my weight for years.

However, despite all the problems that lupus has thrown at me, I've fought to overcome them. I've had pulses of chemo to knock it back. Take regular exercise to keep my weight down, perform weight bearing/resistance exercises to stimulate bone growth, apply sun cream and steroid cream to keep the rash at bay and generally feel lucky to be alive and safe in the knowledge I have a great team of doctors and nurses listening and supporting me.

Although my disease is active constantly and there isn't a week goes by where it doesn't throw me some sort of problem I take control and completely refuse to let it win. But that's not to say I've never felt desparate, low and alone...hey I almost lost the plot just before christmas thinking it had attacked my stomach and after 6 hours in a and e I was only constipated!

So I'd like to hear from anybody, young people, old people, male or female who battle every day and manage to get to work (and get irritated by other serial sick takers!).....but dispite everything believe they have a life, with a problem they manage daily, not a problem they manage daily that has taken a hold of their life!......

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  • OK i heard it :) same as me i am 34 years and woman !! I dont know wot you suggest and i think you might get same treatment as me hope ! :) no stress

  • Hi Lewy

    I love your positive attitude! I have learned that Me & Lupus occupy the same body and we just had to learn to get on with one another. Respect both ways! I know it may sound bizarre to give this dis-ease it's own identity, but I do view it as just that - a dis-ease of the body. So I try to keep my body in an easy state. If the Lupus is angry then the body has enough to deal with! I have become very aware of any signs and signals that need attention. I stopped beating myself up for not being 'normal' - what ever that is.

    I have been through there and back with a couple of very near misses. Perspective of life changes when you have a chronic dis-ease, and I take nothing for granted with my health and day to day functioning. Through the years I have learned to manage myself which has taken a lot of discipline - thought patterns are hard to change but can be done.

    I do have a problem that lives alongside me, but I manage daily. I mind my nutrition and fitness and always do my best to get enough rest. I don't sweat the small stuff like I used to - that is just stress inducing!

    I work in an office part time and as a fitness instructor for another part time. I know - I can't believe it either! The dust and laundry sometimes gangs up and Mr Supermarket rescues me and my family from starvation by doing the cooking sometimes. But I am so thankful for where I am and how far I have come. Every hurdle is another challenge. And every challenge keeps me going.

    My FB says I was born in 1905 - guess that is how I was feeling at the time. However, 40 years on with a DX .... and so much more information and education. Just that is a win.

    Bless you

    Fruitloop x

  • You guys cheered me up xx

  • Hi Lewy,

    I feel exactly the way that you do. I have been on pretty much every drug that is avalable for Lupus since I was diagnosed at 15 (now aged 27) and with all the tests, and blood taking and appointments I admit that it hasnt always been easy. This is mainly due to the fact that I also have Rheumatoid Arthritis (since birth) and Hypothyroidism (since aged 13)

    This is how I handle my health......I have Lupus, I cannot control that. What I can control though is how I deal with it. I have told myself that I will have some serious "down" days when my health gives up - but equally, I will have some days when I can cope and so I will live life how I want. Thats why, to the best I can, I also ensure that I do everything I want to do in life and have a laugh along the way!!!

    I think to live any other way, you may as well put yourself in a box and stay there.

    I am not downplaying anything that anyone else feels or their coping mechanisms. I have had three very serious flares where the hospital staff and my family prepared for the worst as I was almost a goner. I have also had some days when I dont want to leave my room as I feel depressed. But I take each days as it comes and no matter what happens I make sure that I get something out of each day.

    Jen

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