Anyone living with lupus?

[Millieandme]

Hiya,

I wondered if there were any other mums out there with lupus? I am struggling a lot so if anyone else is out there and wouldnt mind getting in touch with me, I would really appreciate it.

Much love

Helena

Hi, I don't have Lupus myself, but my Mum does - and I know it can be awful. Strength and huggs to you

B

I have lupus with no obvious symptoms as such - although Doc says my asthma and joint pains are probably related so I don't think I'm much help. I'm sure others will be more use to you.

My 2 older sisters also have it the oldest one has blood related issues and the other one has stress symptoms with heart issues and digestive issues. My eldest sisters haematologist (sp?) is putting us in a book as he has not heard of 3 siblings with it

Hello, Thank so much for you for replying xxx

My sister also has lupus and so does my half-sister, I worry a lot about my daughter even though that won't change anything. we also have digestive issues, I have been diagnosed with crohns and my sister with ulcerative colitis, even though symptoms are the same.

i also have asthma, eczema etc and joint problems, I was told is all part of auto immune spectrum xx

I am a carer for my DH who they thought had Lupus but it then turned out to be Bechets syndrome. They went through tests for lupus, crohns, IBS etc. It is an autoimmune disease with lots of dreadful symptoms and he has some awful flare ups with it.

Oh hon, Im sorry to hear you have been through so much. Diagnosis was very hard for me, as my blood tests were negative but I had all the symptoms, and I was so afraid they would think it was all in ny head!

How old are your kids? The hardest thing for me is the impact that the flare ups have on what I can do with millie on the bad days, the effect on career and social life and relationship am sure I would have come to terms with eventually, but anything that impacts on my precious time with her makes me really angry!

Much love,

Helena

I don't have lupus but I have ankylosing spondylitis - also auto-immune, affects joints (primarily pelvis, back although others are now joining in), fatigue, etc. Currently suffering with uvitis (eye problem) due to the inflammation spreading there. So, hopefully I can offer some sympathy??

How old is your LO? Mine is 22 months and it's hard, and of course you feel bad for how it impacts on your ability as a mum. But you are the best mum for your little one, no disease changes that. My hardest thing has been accepting that I can't do it all myself and I have to accept help (even today I had a strop about that ), but by getting someone else to do the housework etc it means the time I am able to give to my son is the best it can be etc. Fortunately I have an extremely supportive DH, do you have a partner or someone else close to you who provides support? Anyway, I'm willing to share ideas on things I do/way I do things if you think it will help at all...

Hello!

Thank you for replying, I really have been feeling on my own with this. Am sorry to hear that you have been going through this,

Millie is 17 months old, and I know what you mean about accepting help. There was one stage when I really couldnt get out of bed so mum was here all day until DH got home from work. One half of me really resented it, but on the other hand, I dont know what we would have done otherwise. My DH is doing a bit more around the house now, but has taken a bit of time.

Lupus is triggered by hormones, so having Millie and breastfeeding and stopping probbly set off this flare. I have different medication and I am improving, but there are still about 10 days in every month, when AF comes and also mid-cycle, when I cant really do anything, and that is really hard because I feel so inadequate as a mum.

When I was at college I had the eye inflammation, was awful so totally sympathise with that. do you have to take steriods? at the time I wasnt diagnosed and it was put down to a virus, so for months I was sterilising little eyebaths and rinsing 3 times a day with saline - Had forgotten all about that until now!

I find the fatigue the hardest part to deal with now, is the thing I resent most, is it the same for you?

Much love

Helena

oh yeah the fatigue is the real killer! and I'm sure some people just think I'm being lazy but when I'm suffering with the fatigue it takes a zillions times more effort to do the same thing than it would normally take IYKWIM?! I have my days reasonably well planned now to make the most of the times when I have most energy and mobility. It's interesting as I bumped in to someone in the supermarket yesterday and she actually said "of course when I see you, you're good, it's when I'm not bumping in to you that you're probably struggling". And I thought, yes that's true, people tend to only see me when I'm good so they assume that's what I'm like but if they were in my house each morning pre-medication and in the late afternoon/evening when I'm whacked it would be a different story!

All I can say is I sympathise. My mum is here helping at the mo and on one hand I'm so thankful and on the other my mind is screaming "I can do it myself, I want space" but I know that I have to accept the help until my eye calms down and this flare is under control.

Hi weegle and millieandme,

I don't have an auto-immune disease but have a debilitating lung disease and so recognise where you are coming from, and just wanted to offer some sympathy and support. Weegle, that's so true that people think you are well because when they see you that's when you can actually get out and so they don't really understand how you really are. I have exacerbations that mean I'm stuck in for weeks and then also get that absolute exhaustion, it is so hard then for people to understand, and hard for us to realise we need to ask for help. My children are a little older now (7 and 4) but still lots of hard work and I really sympathise with you millie about wanting to be able to be able to spend time with them feeling well. No answers, but lots of sympathy for you. take care.

Hiya,

I always get so frustrated when I can't do what other mums do, on my bad days I see other mums out with buggies and doing normal things that I cant do and its so hard. but on a good day when we can go out, its like Im a different person.

I think that when people havent experienced illness its hard for them to understand when we genuinely cant do things, which is understandable in itself as I would probebly be the same. I try to hide my condition from the new mummy friends I have made as it makes me feel so inadequate, but think it has backfired a bit as am concerned they now think im a bit anti-social or hot/cold.

I understand being stuck indoors for days and weeks at a time, and the absolute exhaustion and needing space, and also the frustration on the days when I need help. But I do have genuine hope that my symptoms will improve, and that I might even be able to have another baby one day....

How is your eye now Weegle?

Millieandme-hope you are okay.

I was initially diagnosed with IBS and costachrondritis a few years ago, but now dermatologist thinks it is probably Lupus. I will have tests soon. Also concerned that 2 DC have same symptoms (both already have asthma, eczema, food allergies + tell tale skin rash/mouth ulcers). We are all fit at present but fear of the future is really getting to me. And the internet is full of doom and gloom.

hi folks
just joined mums net and saw this thread. I have lupus (diagnosed when pregnant with second child -10 years ago) and this has led to pulmonary fibrosis (lungs).

Reading your posts made me tearful - I soldier on your (like you) so much of the time I think its a kind of denial - so hearing your experiences was like looking honestly in a mirror (yuck!)

I find the erratic course really hard to manage mentally - am I seriously ill or not? One minute you are, and then you're normal. I do work (and have 3 kids now), so on the outside things look 'normal' enough...but...

I began new course of immunosuppression and steroids b4 xmas - not much fun but have seen improvements - has anyone else had experience of that?

My 2 biggest concerns right now are 1) a long haul flight (for work) on Saturday when I am already not feeling very good. and 2)we've been offered a means-tested bursary for middle son (chorister) but based not so much on being especially poor (not rich though!) but based on precarious nature of my health and earning potential. But I'm dreading having to go through all the illness stuff for the bursary report - facing reality.

Anyone else in the same kind of boat?

Dimpletree, I really get where you're coming from with facing stuff for the bursary report. when I filled in my DLA forms I was an emotional wreck for a long time because it really made me face the fact that I had an incurable degenerative illness, was not able to do what others my age can and will never get better. It can feel so hopeless. However, you sound like everyone on this board - we keep fighting, keep going. you can't not with children.
Hope it sorts out for your son and the bursary. Well done with keeping working. I'm unable to work now which is hard to come to terms with. But I can still do what I can and do some voluntary stuff.
Glad you have seen improvements since your course of meds - steroids aint fun.
Take care

madhairday -thanks for the reply. I survived the long haul flight quite well surprisingly..and then last week I went for my bi-monthly lung function tests and discovered the respiratory physiologist has a research interest in long haul and lung disease - as he has a lung condition too! So v. interesting to hear his views about air travel. Tomorrow I meet with my consultant ..always makes me face reality going to the hospital
I dreaded starting the steroids, but apart from weight gain (which I HATE, not as if I was happy the way I was before this!), I reacted pretty well to these - initially zippy verging on manic, which was a nice change from depressed and fatigued!
Hope you're ok this week? Does the heat affect you - I reckon heat plus pollution is bad for me.