Apologies for my moaning again but I'm soooo frustrated! Went back to see my doc today for yesterday's blood results which have come back "normal" again. Even she could tell I was flaring, visible butterfly rash, entire body covered with the livedo reticularis, very severe fatigue, headache, nausea, weight loss and hurting everywhere. She's phoning my consultant to get him to see me as she wanted to admit me. I can't believe I feel so ill yet my bloods still say otherwise? I slept for 12hrs last night yet still wiped out. I'm also feeling very depressed which given my illness is to be expected and very tearful but the worst part is the guilt, feeling guilty because I'm sick and guilty that I can't preform my motherly and wifely duties. My son is 9 and very sensitive and I just feel so bad for him as I can't always smile and pretend that I'm ok. How do you guys cope with this? I don't know what I'd do without this site as you provide the support that only a lupus sufferer can! God bless to you all.
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sezzie
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Hi Sessie, so sorry that you are flaring so badly at the moment....I hope you get some help pretty quickly from your consultant. It is good that your GP is so understanding and can see you are flaring even though your bloods are not showing it. Mine very rarely do and my GP has also seen that I am flaring so that is helpful in itself. It must be such a dilemma to have this condition when your child is still young. The positives out of this is that you sound as though your son is so caring and what a gift that is. I look after my grandson daily after school who is 6 and I too have lupus. I get around it by just saying my joints are a little sore today and he rubs his hands on mine to generate heat....this is such a lovely gesture. For the most parts when I am so fatigued we look at books, watch a dvd that we can laugh at together and bake (out of a packet mix to make it easy and less time consuming). I guess the point I am making is that sometimes 'just being' with someone is enough. On the good days I can put a CD on that we both like and we can dance (me of sorts to it). On a good day we go somewhere. But on those days when I'm not right sometimes I just don't have to say and just plan in quieter things. Of course when you are flaring really badly younger children may pick up on it but could you say.....I'm poorly today but you know this can change and I'm going to get the help. You can reassure him that way and when I'm feeling better what shall we do? That way both of you have things to look forward to and it will keep your hope and motivation there. My heart goes out to you. My grandson lived with us with my daughter until recently for three years so I do understand what its like to have a young one in the house whilst you are going through your worst. Mostly....try not to beat yourself up. Your flare up sounds awful but you know you can pull through and you will have a life time to spend with your son. He sounds wonderful caring to me. Hugs to you xxx
Thank you so much for your lovely post my dr has just phoned and she's spoken to my consultant who's recommend a steroid injection and specialist blood's which are better at showing a flare. He's agreed I'm flaring and is booking me in with him asap. I feel so relieved and can't have that injection quick enough. Yes my gp is fantastic and I have a very good relationship her, it was her who picked up on my lupus whilst other gp's had fobbed me off with depression for years. My son is a fantastic boy and we have a wonderful relationship. I didn't have a pleasant child hood and I always vowed that when I had children of my own I would cherish them and smother them with love. We used to do everything together and led a very hectic life so my illness has been a massive shock and change of lifestyle which we are still getting used to. These days instead of a bike ride we play monopoly or cuddle up and watch a movie. Thank you for your advice and wisdom and wishing you well. X
Your very welcome. All your child will remember will be being enveloped in all that love. Take care and hope the steroid injection kicks in pretty quickly xx
How are you feeling today? Better I hope. I had my bloods this morning and the lovely steroid injection in my bottom, might I add that it was the young dishy dr that did it, extremely red faced my bp and pulse rate were through the roof again so I'm having a quiet and restful day. My bp's usually perfect, do you suffer with this when flaring? If it's the same next week he said he's going to put me on bp meds, just one more to add to the long list of daily meds! I hope this message finds you well and have a lovely weekend. X
Thank you Sessie so much for asking. I'm a bit better today thanks. Yesterday was the pitts......with stiffness in neck, shoulder, back sore and chest pain/difficulty breathing. I thought if it carried on I too would be asking for an injection. Luckily though I take my methotrexate on a Thur night and although still stiff it has eased today with lots of paracetamol and heat pads used. Thank you for asking and I'm so so glad that you got a steroid injection and hope it works really quickly. xx
I'm so sorry to hear you had such a bad day yesterday, are you feeling any better today? Hopefully the methotrexate will start to ease your symptoms soon. Do you suffer from pericarditis? I think that's the one I'm thinking of as that can cause chest pain and breathlessness. I've suffer with violent heart pounding with my heart going really fast and it's so frightening in fact I've had it everyday since flaring. I still feel dreadful today and so nauseas I've had to have an anti sickness tablet. My knees are really stiff and sore today and my neck like you. I find the fatigue the worst, I've never known anything like it Oh the joys and how we suffer in silence. this is the only place I can moan as I try not to at home as I'm sure people would soon tire of it. Thinking of you and I hope you are feeling better. X
How are you feeling today? I don't know why but I couldn't read the message you sent me yesterday, I got as far as you'd be out for your granddaughters birthday and it wouldn't let me read anymore so apologies for my late reply, I've been trying to work out how to retrieve it and couldn't, maybe a blonde moment I hope you are feeling better. X
I hope you feel better soon when the steroid injection kicks in. Thank goodness you have an understanding GP and Consultant, does make dealing with this nasty illness a little easier. Take Care X
Thanks misty14. Still feeling dreadful today and praying that steroid injection kicks in soon. Yes I'm very lucky as their are 2 drs at my surgery who are very understanding which really helps. Xxx
I want to thank you both for sharing what you have here
My husband & i haven't been able to have children...I grew up excited to have several children...we tried for years, but by the time when we'd accepted that no children would ever arrive, I was so poorly most of the time that I felt relieved. But I love our neices & nephews, great nieces & nephews, & godchildren, who we only see briefly & infrequently
now I'm finally being treated for lupus, and I'm wondering if, under treatment, we might have had children...but could I have coped with success. And now we know that my DES daughter reproductive organ birth defects mean I was unlikely ever to deliver a child, no matter how hard we tried.
Your very very moving & beautiful posts help me imagine how we might have managed. Thank you so very very much for helping me see how it might have worked for us.
I do feel extra sad as I send you both this reply, but I also feel great respect and also great joy for you both
I am so sorry to hear that you are unable to have children and my heart goes out to you both. I suffered several miscarriages before my son was born and I started thinking I'd never be able to carry a baby full term and their are no words to describe how I felt so I totally empathise with you.
I'm pleased to hear you got some comfort from our messages although feeling a little guilty. Have you ever thought about fostering or adopting, it sounds like you have a lot of love to give?
We didn't get to the point of fostering/adopting because until so late in life, we were unaware I wouldn't conceive and by then I was very poorly & my husband managing the results of bad crohns and many major ops all his life.
Like so many on forum, turns out I've had SLE untreated all my life. I'm 60 now, and just over 2 years ago learned I'd been diagnosed ith SLE several times as an infant & teen. My untreated sle condition has progressed enough to be very debilitating. On top of that, the NHS has only just stopped denying that DES exposure in utero has caused so much infertility & organ defects, and I have also benefitted from the nhs admitting this & establishing protocols for monitoring & treating des daughters during the past 2 1/2 years
But, somehow, we have both managed to have had rewarding demanding careers, and close, loving relationships with some special family & friends of all ages. This hasn't been easy either - as all of us here know.
Please I hope what I posted hasn't led to even a pinch of feeling guilty: I didn't mean for any to be felt! I just wanted to show respect & appreciation for your posts.
Omg what you have been through over the years, how do we find the strength to carry on??? At least you have a wonderful husband and some treasured friendships!
so right, thanks sezzie: best to look on the bright side as often as poss & come here where real understanding is found when we feel the dark side is too much for us to bear alone
I feel for you as I haven't been able to have children either. I haven't got a large family to make up for it but somehow acceptance comes in doesn't it?. Hugs X
Thanks misty. Yes! Acceptance + a numbness + a sad relief that I never had to cope with the heavy challenge of caring both for myself & children & my chronically ill husband...but when I read the beautifully honest and intrepid and loving posts from mothers here, I realise that there is a way, motherhood can be managed. I find this deeply moving. I feel huge respect of all who have been ble to be mothers.
Hi Sessie, my bloods are normal .. even my rheuma thinks is weird ... He seriously thinks ive connective tissue disease .. and have Systemic Symptoms ... shown up on tests and MRI's ... yet bloods "Normal" He has written to the neurologist for me to have a Lumbar Puncture ... its the last resort he can do in the Hospital here ... I really dont want to go to London ... Ive a 5 yr old and a lone parent so I understand .. upsets everyones life and the way we live It is very frustrating that it seems all a mess and not straight forward ... I try to do indoor things my son likes, we've left the tree and lights up (Christmas) and have been making decorations for it (celebrating Spring and Easter) Taking photos to share at school. I often feel like a second class mum, guilt is normal ... but ignore it, ignore all the people that do these outdoor pursuits with their children ... why? because their lives are not perfect either .. Ive learned that through yrs of experience ... You are doing amazing! keep telling yourself ... You are coping, you are strong ... because other mums are not battling long term illness ... Ive lost all my hair, eyebrows and eyelashes too ... I look like someone out of a syfy movie lol .. got a wig but it itches terrible, so I either wear scarves or woolly hats (its cold at mo) My son doesnt see any difference in me, he treats me like MUM ... and Im sure thats how your son feels ... start smiling, make him laugh ... thats what memories are all about ... he'll remember a loving mum (even though ill) who is a strong person that made him laugh ... I could scream out loud ... but instead I cry ... all because we have been strong for so long ... lots of love and hugs ... lets hope the consultant finds answers .. God bless you Xxx
Your message really touched me and you've just described in prefect words how all us lupie mothers feel! It must be so hard dealing with this on your own although between us sometimes I think I'd cope better on my own as a year and a half on my husbands still in denial and spends most his time in self pity mode. I appreciate it's hard for him is hard for us all but it says something when your 9yr olds more understanding! Lumbar puncture.... ouch. Fingers crossed it will give you the peace of mind you so rightly deserve.
You are in my thoughts and continue being mrs strong super mummy. Xxx
My blood's have been coming back negative and yet,I jhave been quite ill and have had to have steroid injection's even though I am injecting methotrexate,am on morphine and hydroxychloroquine.My GP said that the blood test's aren't necessarily conclusive so,where do we go from here?
My gp and consultant have said the same to me but I find it hard to digest that when you feel like death your blood's are saying different. Has the steroid injection helped yet? I had mine on Friday morning and it kicked in yesterday afternoon and I feel so much better. I'm still fatigued and weak and tire very easily but so much better.
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my dr has just phoned and she's spoken to my consultant who's recommend a steroid injection and specialist blood's which are better at showing a flare. He's agreed I'm flaring and is booking me in with him asap. I feel so relieved and can't have that injection quick enough. Yes my gp is fantastic and I have a very good relationship her, it was her who picked up on my lupus whilst other gp's had fobbed me off with depression for years. My son is a fantastic boy and we have a wonderful relationship. I didn't have a pleasant child hood and I always vowed that when I had children of my own I would cherish them and smother them with love. We used to do everything together and led a very hectic life so my illness has been a massive shock and change of lifestyle which we are still getting used to. These days instead of a bike ride we play monopoly or cuddle up and watch a movie. Thank you for your advice and wisdom and wishing you well. X
Oh the joys and how we suffer in silence. this is the only place I can moan as I try not to at home as I'm sure people would soon tire of it. Thinking of you and I hope you are feeling better. X
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