Lupus

Hi. I'm Kim and my husband has just been diagnosed with Lupus. He seems to have lots.of symptoms such as; rash across face, dry eyes, gastric problems, sinus problems, fatigue, pain in hands and feet, migraine, tinnitus. I'm concerned for the future and more than a little scared. How does everyone manage their condition?

[grannyjogger]

Hi Kim. you will get a lot of support on this site. One of the worst aspects of having an autoimmune disease or living with someone who has, is not knowing what is happening. Symptoms vary so much and experiences with doctors and rheumatologists vary even more. I wish I had found this community many, many years ago because there is always someone to come up with support or words of wisdom. It's understandable to worry about the future and I hope it helps to hear how others cope with their symptoms. I have the symptoms you have listed (well, not the tinnitus) as well as quite a few more!!!! Looking back, my symptoms started sometime after I had my first daughter and she was 32 last week. I'm 63 years old and I still work full time. Yes, I am tired a lot of the time, I could do without the painful old joints, the gastric problems, the poor lung function and the brain fog as well as all the other odd stuff that flares up sometimes, but I have so much to be grateful for. I have two daughters, both married to lovely people and they have given me two adorable grandchildren (another on the way in February) and life is good.

You and your husband will find ways to manage his condition. Take it one step at a time. Post your worries on here and you will find that people understand and it always helps to know that you'e not alone.

[Hidden in reply to grannyjogger]

Thank u so much for taking the time to reply. I'm so glad you have managed to live a near "normal" life as possible. Fingers crossed for us.

[whisperit]

Hello KimnJay,

I was diagnosed in April of this year and have found it a major challenge. Eighteen months ago, I was doing three part-time jobs and mountain-biking every weekend. Now, I'm unable to work at all, and am almost housebound. But I find that some acquaintances have talked about my situation as if this is the only way that auto-immune disorders go, and this is wrong.

In fact, the range of people here is mind-boggling. There are loads who seem able to manage their illness and maintain the same life as they always had with only small adjustments.

From a psychological point of view, what I have found works best for me is to try and combine a pro-active, determined attitude to treatment and medical advice with a kind of buddhist acceptance of whatever life brings. In practical terms that can mean not being shy of chasing after consultants and their secretaries on the phone, making GP appointments every week, making polite but insistent requests to see test results and not taking "no" for an answer. And then sitting back and watching the rain on the garden and thinking, "Wow. It's all so beautiful" *

But the main thing for now is to try not to panic, and keep your friends close.

Mike x

*I sometimes have trouble with this when I am being sick in the toilet, but I'm working on it!

[Hidden in reply to whisperit]

I was touched by your reply. Thank you so much Mike. So glad yr still seeing the good in life. I wish you all the very best. Kimx

[1sam in reply to whisperit]

Lovely attitude! You sound better than a month ago....

Hidden for me, every month is been different, but I know I have to be patient with my Drs and myself while we find a perfect combination of meds. Being scared and paralyzed won't do much for me, my family, my 10hrs a day job, or my pets.

Nosy as I am I always check my lab test results and keep a copy of them, so I can help better my Drs to correlate my symptoms with those numbers... they see us maybe 15minutes, there is no way they could be asked to remember all our test results.

I can't control my body's disease but I sure can be involved in managing it.

Be patient and don't overlook all the great things that still happen in your lives

Samantha

[Hidden in reply to 1sam]

Yr so right Samantha, I do need to exercise a little patience. Its just my instinct to want to fix things and of course this time I cannot. it's a big period of adjustment for a control freak like me haha.

[Neiluk75]

Hi. Makes a nice change to see men referred to on here. I was diagnosed last year after 6 months in and out of hospital. Looking back it had been going on for ages and I just blamed work and the weather for all my ailments. Best thing to realise is that no two days are the same. What is playing up today is fine tomorrow. And spend all your time being told u look so well you must be better. Only those closest to you see the fatigue and pain and those moments when you can't quite remember who you are what your doing or he to make your legs move. My partner is amazed that I can burn toast under the grill every time I make some (3 times In a row this week) I just forget it's there.

[Hidden in reply to Neiluk75]

Hi, good to hear from u. I guess keeping our sense of humour can help us all a lot and see us through those dark days. So, as a sufferer yourself, what can a partner do to help without going under themselves. I do so want to be supportive but I'm at a loss.