I am worried. Since I am possible affected by Lupus my worst symptom is fatigue. Now I am getting into trouble with my wife which makes me very sad. Last weekend we were invited to a wedding which was about a three hours drive away and I just could not make it. My wife drove there with our daughter, her parents and sister. When she came back she was all upset and very aggressive. "It would have been so much nicer with you by my side at the wedding" and so on she said. "You could have rested in the hotel room" etc. was her answer to everything.
Now I just could not go to that wedding. I was so tired, fatigued indeed, that I was glad to just be at home and lie around. I really felt bad for not going to the wedding but honestly I was too down.
My wife now behaves like I have cheated her with another woman or killed someone or stuff like that - when all I am guilty of is that I did not make it to that wedding.
Can someone relate to such situations? I am very sad. I fear that Lupus might destroy my relationship and that makes me very very sad.
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Schnulke
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Hi..sorry to hear your feeling sad...maybe your wife needs educating yo the symptoms and seriousness of lupus..maybe she just doesnt get it! You could take her with you to see your gp or specialist so they could make her realise just how tired/fatigued and down it can make you..i hope things improve for you x
Hi Schnulke. It sounds to me that your partner has no idea how awful you feel. In my experience I've found that big family social commitments tend to flag up my health issues for me and for everyone else .. "why can't you just make the effort?" .. "couldn't you have paced yourself better?" .. and other maddening comments have been made to me by my mother this year when I couldn't make it to her retirement event and mothers day. I realised that she just DIDN'T GET LUPUS. Thankfully my husband now understands fully and helped me by buying the DVD from lupus UK and watching it with me, and then talked to my mother about it.
I wonder whether you feel able to talk to your partner about how you are feeling? I realised that I was afraid of 'making a fuss' so I didn't tell people how awful I was feeling, then felt really upset that they didn't understand how how I was feeling! I realised I was going to have to TELL THEM. This is hard, so I advise you to get the DVD and watch it with your partner. I reckon she just felt disappointed to not be sharing the wedding day with you, but is expressing this very badly (like my mother did - I felt she was angry at me too like I'd betrayed her!!) Disappointment can come out wrong and sound like anger. I hope you are able to talk about your feelings together and that she can get a better understanding of what you are going through. xx
Hi, I can fully relate to your post. During the middle of a bad flare you don' t have the energy to do anything and if you do you know you will feel worse for it. In the middle of a bad flare up my husband (who is considerate) suggested that his work colleagues would just call in on a Sunday. This would normally be fine with me but given that I wasn't right and my house was untidy and I did not think I could hold a normal conversation (brain fog). I did not think I would give a very good first impression. As it was they didn't call but the thought of it was just too much. We do understand completely how you feel although I do think it must be so hard for partners too. I often think they need the support to off-load too and it would be good if there was a group available for them too. I found the placquenil good to combat the fatigue and this has been a godsend. Very often I will say to my husband the imapct that this is having on me but also recognise that it is hard on him too. I find it reassurring to still talk about the things we like to do together so that we still gel.......like listening to music, books, meals together and just being in each other's company. This illness has it's challenges but we can't let it beat us. I hope things work out well for you both.
I thank you all for your replies. It makes me feel a little better to know that other people have the same problems and that it´s not like I am guilty of something. Of course you can all understand how I feel because you´ve got the same restrictions.
I would buy the DVD from Lupus UK but I am German and my English is fair but my wife is from Poland and she does not speak any English. Maybe I should buy it anyway and watch it with her and try to translate...
My wife is a nurse, has been for years. She is very experienced, having worked in psychiatric wards, internal and gastro-intestinal nursing and is currently employed as an anaesthetics nurse.
She is about the only one in my whole family that at least tries to understand me. But sometimes I feel that she thinks I am using my fatigue and pain as an excuse so that I do not have to do things. This is simply not true. I am - well used to be - a trained firefighter, paramedic and rescue-diver. I have worked in that job for years and I feel really like "castrated" since the onset of my symptoms and the succeeding loss of my job. Nothing of what I´ve once been remains - I also used to run marathons and was a reserve soldier in the German Army. Nothing there of that anymore....
I understand how you must feel. We've got two weddings to go to this month. Both are close to home. The first one is a family affair and i don't think they will mind if i don't stay all day as they know i have lupus. The second one however, i am dreading. They don't know me, they worked with my husband. It's an all day and all night affair. I've told my husband i will go during the daytime but not at night. Maybe your wife doesn't quite realize how lupus affects you.
sorry to hear that i 2 think u should take ur wife to see ur gp or consultant when u go and then ur wife may be aware on how we are all effected i av got the most understanding husband and he nows when am aving a bad day with out me saying he leaves me inn bed and gets up does all cleaning for me on wkend help 2 do meals all the time even when he at work he comes home and help and never complanes and always supported 2 me ,
Hi, I think this must be particularly difficult for you as a male, especially from what you say about your life and career before lupus. I understand the feeling of nothing being left of what you were before, and agree with what the others have said about educating and talking about lupus and it's symptoms and their impact. I imagine that as a man, this must be particularly hard, being that lupus mostly affect women, and that it is usually 'easier' if that's the right word for a woman to ask for support and talk about the effects of their symptoms, the male/female roles that exist, like you say feeling 'castrated', I say easier, I think I mean 'different' really. I imagine that you and your wife are both in a form of grieving for the life that you both had, and I guess something like not being able to attend a wedding is a surface frustration which is deeper that an event. I know that I feel dreadfull if I have to let my husband and kids down over things that I should attend, or want to do but can't, and I am trying to imagine the situation if it were him not me who had the lupus and I imagine that it would be really hard for him to deal with, I hope that you can work through these difficulties and find a new way of being as a family. I wish you the very best, and hope that your fatigue improves as I understand just how debilitating it can be. x
Hi, agree with this post. I know that I spent years grieving for my lost health and youth. I was diagnosed at 29, but had been suffering for 3 years before hand. Even after diagnoses and the onset of treatment I completely denied that I had anything wrong. And because I just kept popping the pills etc and knocking myself out at night etc I some how managed to fool myself that it was all fine, until I got to the point where I was convinced I was going to die! That was the point at which I started to grieve. I was an emotional wreck. I couldn't see why people couldn't see what I was going through etc etc, But now, I am just about to turn 40 and am having the best spell I can remember, I am still brain fogged, forgetful, in pain, but my general outlook is much more positive and i am now aware of how much my husband has lost through all of this.
I suppose what I am trying to say is that your wife is used to having a high octane man, and she needs to be able to adjust to this new way of life. Living with a Lupie is not easy. It must feel to our partners that it is all about us!
I hope this helps. But communication is quite critical.
Contact Lupus U/K for some leaflets and a C/D that will explain all about Lupus.
It is hard for people to believe you are ill as we look so well,even to-day if I am having a bad day my Husband ask what's wrong,he has not taken the time to read about Lupus and I have had this for 23yrs .this is where the C/D and leaflets come into their own you can read them together and the same with the C/D.
Hi. We can ship to Germany, but the order cannot be placed through the website. If you let me know what you'd like to order then I can work out how much postage will be for you. Then we can accept payment via cheque.
That makes me very sad to hear! Your wife needs to walk in your shoes!!! My fatigue is very bad!! and If my partner did not understand I dont know what I would do!! She needs to understand you CANT help it, and it makes it worse when they dont understand!! Hang in there. Love, Krisdy
I wish my wife could read these English posts here. I´ve decided to write her a letter discribing how I sometimes/often feel. Maybe written words will make it more clear to her....
I fully understand how you feel. I've had a rather rough time recently, healthwise, i had a deep depression caused by lupus. My partner of three years just didn't understand at all - in fact (after me saying some rather harsh words) he left the house for two weeks. I feel as though he should've know this wasn't me talking that the lupus had won at that moment! I honestly don't think anyone can undrstand unless they have experienced these things themselves.
I do understand our partners and families frustration at times but its not our fault, we want to be able to lead a 'normal' life.
I believe that the lack of understanding plays a major role here - after all would we be treated this way if we had cancer? I think not but that Is because everyone is educated about cancer. Unfortunately most people don't know what lupus is!!
I dont think my partner gets it .. i have tried to talk to him tell him how i feel try and discribe the pain the tiredness .. the last week i have been really low and he tured around and told me" i had to suck it up and get on with it " tring to put a brave face on and its not working
These messages have all hit a nerve with me. I was only diagnosed a year ago but have had symptoms for many years. My Dad is always saying 'There's always something wrong with you' and has called me a hyperchondriac many times. Ironically I lost a close school friend to SLE when we were 29 (now 36). My Mum is dismissive about my health and is unconcerned even when I express pain. My husband is a very caring, gentle and supportive man but I think even he must struggle with the ongoing issues I am encountering. I will definitely be getting some info for my family and husband. I only found this site yesterday and am finding it informative and helpful. I think education is the way to go.
I'm with you all. My husband is a doctor and he's so clinical - it's annoying! He doesn't have any empathy and I sometimes think, 'I wonder if you are like this with your patients'. Somehow I don't think so. I do try and rise above it, but I do think if only I'd known this before I said 'I do'. Hindsight is a wonderful thing. Anyhow, nobody knows what's round the corner and hopefully good health will be there for us!
like everyone else I really empathise with you; it is very hard trying to explain this disease when even we don't really understand it. BetsieBoo is right: if it were cancer everyone would grasp what we go through! I had a look for books which might help and found this (available from Amazon.de)
Lupus erythematodes: Information für Erkrankte, Angehörige und Betreuende - you don't say if your wife speaks (or reads) German. The only Polish book I could find is a textbook - Systemic Lupus Erythematosus 5e by
Jill Buyon, Takao Koike, Robert Lahita and George Tsokos (it's available from merlin.pl) but as your wife is a nurse, she might find it more useful than most people. But I also thought it might help if you translate some of the posts on this forum: if she can see how other people cope with the disease - and how badly it affects us - she might start to understand what you are dealing with. It sounds as if you read/speak Polish, so it might be worth checking to see if there is a Polish equivalent of this site (although I grant you that's not very likely). But obviously you can't give up trying to help her to understand, and so I wish you - and everyone else struggling with unsympathetic family - the best of luck. Jo
Hi sorry to hear about your wife yes I can relate to this you should get the video about lupus it’s really interesting to watch and maybe your wife will understand what it’s all about it’s not easy for us living with lupus what happened with sickness and in health vows you should say that to her and if it was the other way around I’m sure you would look after your wife as you sound a lovely man please look after yourself and I hope you’re wife eventually relies it’s affecting your life and body I hope everything goes well for you take care and stay safe
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