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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to think my Mum should have come round after my not-great -news?

63 replies

ShanahansRevenge · 22/11/2010 16:15

I foud out today that I more than likely have Lupus...if you don't know about it, it's a chronic disease...no cure...where your immune system attacks your body in certain ways.

With me it has given me skin rashes on my face and it can progress to arthiritis and kidney failure among other things. Not always...but it can.

My Mum wanted me to ring her after I had been to the doctor and so I did and I told her that the doctor said that it seems likely I have it but blood tests on Monday will reveal for sure.

Now I KNOW it's not some things which are much worse but it is still a life changing disease whch can totally render some peoploe incapapble of work...and can also be very disfiguring...and I feel scared and a bit depressed...I have two DC and husband working away...so on my own.

I asked Mum if she would be coming to visit me...as I could do with a distraction... and she said "no I have to tidy up, you probably won't have it anyway...I dont think you have it and I might visit tomrrow"

Now the doc was not SURE but she said it was likely due to my strong symptoms and another family member with it....so AIBU to feel slighted?

OP posts:
ShanahansRevenge · 22/11/2010 17:01

This reply has been deleted

Message deleted by Mumsnet.

Original poster
ShanahansRevenge · 22/11/2010 17:03

Thank you Pip...I have already made progress on the not googling thing! I am goin to close this thead as I am too effing upset now. But thanksto those who helped.

OP posts:
scurryfunge · 22/11/2010 17:03

Lougle, your comments were insensitive.

Lougle · 22/11/2010 17:10

ShahahansRevenge, MN doesn't work like that. You can't choose who posts.

Scurryfunge, the OP has written that she 'more than likely' has discoid lupus, and hasn't yet had blood tests yet, and the GP has told her that it is a good sign that she has had the rash for over a year. Why is it so insensitive that her mother didn't rush to drive 5 miles to visit her daughter, who had got upset because she didn't listen to her GP?

nigglewiggle · 22/11/2010 17:18

Lougle - I still remember how I felt when I got my diagnosis. All I heard was "immune system disease", "incurable", etc and my mind started to spin. I did not have the added complication of having seen my sister suffer with a very severe form of the disease. So I can only imagine how worried the op is just now.

Hopefully things will turn out to be less-serious than she fears and I sincerely hope so. Your comments are certainly not helping her to feel better at this worrying time.

Original poster
ShanahansRevenge · 22/11/2010 17:19

Lougle get a life, move on to a thread where the OP welcomes you...this one was started by me...about me...and I don't want your thoughts.

OP posts:
scurryfunge · 22/11/2010 17:21

Lougle, If you have ever had tests for any disease you would appreciate how worry builds up in your mind when you do not know for sure. The OP wants a bit of tlc from her mum, is that so bad?

Original poster
ShanahansRevenge · 22/11/2010 17:22

That;s it Niggle...it is a whirl...and I am in a panic because my sisters case is so severe she is now disabled by it...very ill at times and on strong medication which further debilitates her.

I am worried because I have kids..and a lot of things that I want to do...hopefully I will b fine...I will try to concentrate on other things and eep busy.

OP posts:
Lougle · 22/11/2010 17:24

But nigglewiggle, the OP has been told by her GP that it is likely that she has the skin-confined version of the disease. She has been reassured on here that discoid LE is very manageable. Yet instead of being reassured, she is still hanging on to the possibility of being the 1 person in 20,000 who will not only have DLE (1 in 2,000) but also go on to develop SLE (10% of DLE patients) despite the possibility being completely random.

The OP doesn't want reassurance, she wants to be told she has a crap family.

Finn15 · 22/11/2010 17:25

YANBU
There's something about being poorly (or the threat of being poorly) that makes even the strongest grown woman want their mummy.

Best result is that you don't have it, second best result is that you have a milder version that can be managed. I have two close friends with Systemic Lupus and you wouldn't know they had it - but they manage their diets extremely well and keep up with regular clinic appointments.

Perhaps your mum is struggling to comprehend/in denial on the basis that your sister has such a tough form of it. Not nice but perhaps you can make a small allowance?

Lougle · 22/11/2010 17:25

Scurry, I don't doubt that, and it isn't a bad thing to want a visit. But to get cross when someone can't visit in the two hour window you set, is unreasonable, and this is AIBU.

scurryfunge · 22/11/2010 17:27

Oh come on Lougle, have some compassion.

scaryteacher · 22/11/2010 17:31

I was told I might have Lupus, but actually have ITP. It gives me a pinprick rash when it is bad, and blood staining (brown marks) on my feet and legs. It gets worse when I'm stressed and also when I have a virus.

I was also told that it is really difficult to diagnose Lupus as the symptoms can be the same as other diseases and you really need to see a rheumatologist to get a firm diagnosis.

Don't (and I know it's hard) get too wound up about it. You don't know anything for certain yet. GPs don't always know about things like this - mine said my lack of platelets in a blood test was due to my blood sample being left on a radiator somewhere, and that having clotting problems in pregnancy was normal. Duh!

Lougle · 22/11/2010 17:31

Scurry, your right, I will step away. If the OP had posted about the LE, I would have reacted differently, but I honestly don't think the mother did anything wrong.

Original poster
ShanahansRevenge · 22/11/2010 17:37

scaryteacher...I will go and google IT now! Can't help my googlng habit!....the doctor mentioned that I would be seeing the dermatologist this Friday and after bloods had been done, she would know whether to go down the dermo route or the rheumatologist route...I suppose she's looking to see if it is systemic.

OP posts:
Original poster
ShanahansRevenge · 22/11/2010 17:38

Yes Lougle...go along now...go and pick on someone else....maybe someone else with worries?

OP posts:
princessparty · 22/11/2010 17:38

I agree with your mum, no point wallowing in sorrow when you don't even know yet.

Jux · 22/11/2010 17:42

I have ms and I go to a 'Tai Chi for MS Group', which is run by a guy with Lupus. Unbelievably, at one point he was so bad that he 'nearly died' but he has been fighting fit for a decade. He attributes this to diet and tai chi. He takes tai chi very seriously because of this.

I hope you get good news and don't have it, but if you do, try to remember that there are things you can do to keep it under control and to minimise symptoms.

Thinking of you.

Jux · 22/11/2010 17:45

Oh, and while I was waiting for dx on ms, my mum wouldn't really discuss it either. As far as she was concerned if it wasn't definitely dx yet then there was no point in jumping the gun and feeling all those negative things needlessly. Mind you, she worked in the NHS all her life and had seen a lot of people who had 'decided' they had something when they hadn't, so her attitude stemmed from that.

piprabbit · 22/11/2010 17:46

Must agree with princessparty.
No point wallowing ATM. Use your energy to keep positive - let the bad stuff slide away like water off a duck's back. Think calm serene thoughts as far as possible.
Stressing won't help your symptoms if you do have Lupus and will have been pointless if you don't.

Lougle · 22/11/2010 17:51

ShanahansRevenge, do you always treat people who don't follow your ways the same? I am gaining an insight into why your Mum didn't come running, TBH.

There is a 1 in 2000 chance that you have DLE, and the GP isn't even sure who you should be seeing yet, but you think your Mum should drive over to see you to comfort you about something that isn't even known yet.

AmazingBouncingFerret · 22/11/2010 17:58

Yes, she might not have it. But fast forward quite a few years (or not in your case I dont know how old your children are) Your children are distressed and very upset, you are telling me you wouldnt drive a mere 5 miles to have a cup of tea and maybe give out some hugs. You'd rather tidy your house?

Sorry OP that probably makes you feel a bit shitter, it wasnt my intention. Like I said at the start my mum is similar in her reactions. Im sure when you get your results back she'll be much more supportive.

Lougle · 22/11/2010 18:01

I think it probably depends on the relationship, ABF. Right now I can't imagine having that reaction to one of my children, but I know from experience that if you pile on the crises, people get jaded.

scoutliam · 22/11/2010 18:04

But you haven't actually got any "news" not so good or otherwise.

I'm sure your a bit stressed but you seem to be blowing things out of proportion at the moment.

Limez · 22/11/2010 18:07

Some people just need to have people pandering to their worries - but some people run a mile from that kind of navel-gazing.

You have every right to take the news badly (the news being that you might have something not great but not awful and you will have a test to find out) but your mum is not in the wrong to not get caught up in the dramatic specualtion.