[Lisa'sLearning]

Hi everyone...

This is my first post. My name is Lisa, and my fiance was diagnosed with Lupus approx 15 years ago, in his late teens. He has gone years between flares, although he is on several Rx medications. I've never been privy to the start of a flare, and am fairly convinced he is experiencing the begining of one right now. I'm frightened, as I do not not know what to expect.

Right now he is absolutely exhausted. He comes home from work at night and falls fast asleep. To describe this as fatigue is puting it very mildly. I have never seen him like this, as he is normally full of energy. He's also experiencing terrible headaches. This has been going on for about a week. And while he sleeps, I sit awake all night terrified of what's to come. About three years ago, after a misdiagnosed blood clot in his calf traveled to his lungs, he spent a week in ICU. He has been on blood thinners since. His Lupus has been in remission for years.

I keep stressing communication to him, but I know he is hesitant to discuss his illness with me because he doesnt want to worry me anymore than I already am. This is counter-productive. I'm not going anywhere, and can and deal with whatever comes his (our) way - so long as I understand it!

Can you shed some light on the symptoms for me? I understand there are two types of Lupus, and he has both of them.

With appreciation,
Lisa, Long Island, New York

 

[eagle55]

lupus

Hi lisa,sorry you are going thru thisl you are right communication is very important. i jhave had lupus for 23 yrs now.it is a strange disease.this fourm has lots of information that you can read about that might help you. hashe gone to the dr. lately. he needs to see what stage it is in. then maybe they can find something to help the fatigue. because i know how that feel. just keep telling him that you can handle anything but you have to know what is going on. he sounds very nice not wanting to worry you. but on thing i have learned it is not selfish to think of yourself first. it will help eveyone else. hope that help some you should get a lot of good repleys email me anytimetake care sue

 

[lazylegs]

Hi Lisa,

Welcome to the site. I wish we didn't have to meet under these circumstances. Your fiance is a very lucky man to have such a caring future wife.

The description you gave does sound like it could be a flare. Since it has already been going on for a week it doesn't sound like rest and his present medications are not enough to knock this one down. I would recommend that he let his doctor know what is happening.

I understand your concern with the situation. It is always hard to see a loved one suffering. You do need to get some sleep yourself though.

In my experience when you go into a flare it is an emotional upheaval. Not only are you miserable but you are just plain mad that it happened. Since he is a man and wants to be the strong one in the family that is an added stress. Usually I want to be by myself during the worst of it. Kisses, hugs and tender gestures are greatly appreciated, but I pretty much hibernate. When he is ready to talk he will let you know.

Take care,
Lazylegs

 

[Maia]

Have you tried explaining your thoughts to him just like you wrote it out? That sometimes the unknown is worse than the known?

Sounds like he may have Hughes syndrome as well as lupus with the blood clot history. Perhaps he also has skin lesions with his lupus? You may want to start off by reading all about lupus, so you can be educated when you talk to him the next time. You can just say you notice how tired he is and it has you concerned because you love him so much you want to be sure he is doing everything he can to treat this apparent lupus flare.

He should be making an appointment with his rheumatologist to deal with this severe flare up, and some medications may be switched/added temporarily if nothing else. It is very promising that he has managed so well for so many years, and there is good reason to believe that this flare will be managed with medication and he will resume his more normal lifestyle.

Another possibility would be depression could be setting in.. especially if you do not notice other signs of lupus worsening such as pain and stiffness in the joints (like difficulty opening jars, etc.).

It's hard living with lupus for sure, but it's also hard for our loved ones who must feel quite helpless at times too. I hope you can open up a better line of communication with him - some people will ask to go to doctor appointments with their loved ones too (for support or just to learn about the disease). Something else to consider...

Good luck - let us know how you get on.

 

[Taree]

Hi Lisa

I'm fairly new to the forum and it has helped me sooooooooooo much! I'm in the process of telling my boyfriend about my lup... my guess is that your fiance is more frightened for you than himself.

I too struggle with actually speaking about it so I'm taking the excellent advice of all who responded to my dillema and printing some info so we can sit down and chat about it together. Perhaps when he is feeling a bit better you can read small sections of what you think relates to him and then discuss it.

In the meantime you can chat to us! The support I've received is amazing, it's such a relief to be able to speak about it!

I hope my boyfriend is as caring, considerate and supportive as you are! Please let us know how you both are doing.

X T X

 

[Clare.T]

Welcome Lisa

Sooner or later his lupus has to be discussed but maybe right now he is very scared that he is in trouble again if, from what I understand, he's been getting along alright in recent years. Strangely enough it isn't all about him is it although no doubt he sees it that way. I am sure there's a whole complex of emotions at play and he's possibly just too choked and unwell to be able to voice his fears. Maybe he will find it easier when he's seen his doctors and has a better idea of what's going on.
That is the most important thing - to find out what's what as soon as possible.
Having lupus brings out the best and the worst in people- in the patient too!- as well as the whole area in between, showing up personality traits and relationship problems. It is impossible to make people talk if they don't want to, read aren't able to, but there is no reason why you shouldn't make it quite clear how it is impacting you and how unfair it is. If he is like this now with this major issue what will he be like about all the other crises that will undoubtedly occur in your life together. Anway assure him of your love and concern and tell him that you need to know.
Being associated with a secretive man who can't bring himself to express emotion and talk about problems means a life of anxiety and uncertainty and I know what I am saying - I have had 42 years of it.

Talking about knowing about things ( which is what I meant to write about) it would be very useful for you to learn more about lupus in general so you can know more about how it is affecting him when the time comes for him to open up. And let him know that you are finding out as much as possibe because this is part of his life and you suppose you are also part of it hopefully the most important one.
You mention that there are two sorts of lupus and he has both. No doubt you are talking about systemic disease in which is inside and often quite invisible and skin lupus which is often very visible. Although skin lupus won't kill or cripple it is very very hard to bear.
As for the systemic lupus it affects people in a wide variety of ways. There are major areas of great concern: cardio vascular effects, lung disease, blood disorders caused by associated disease which can cause clotting or might cause bleeding, a wide variety of central nervous system involvement and kidney disease. On top of that there are also all the other possible effects, some more common and obvious like joint aches and pains with a slight possibility of joint damage, to the eyes being affected.

Crushing fatigue is the symptom most complained of strangely enough because I guess there's often little that can be done about it and you can't deal with it if you have a fulltime job and commitments. Each person with lupus is affected slightly differently, both how lupus affects them and to what degree. Depression is also very common - it can be caused by the lupus itself as well as a reaction to having lupus.

The main thing right now is that he sees his doctors. If he isn't doing that then nag him and don't hesitate to say you want him to do it for your sake. I wouldn't talk about communication at this stage. Focus on supportive action.

This is quite long enough so I must stop rambling on. Be very patient, be there for him as they say reassure him constantly but don't turn yourself into a martyr.
We will help you all we can so ask about anything you need more info about.
Very good luck to you both !

Clare

 

[Lisa'sLearning]

I want to thank you all for your encouraging replies. I have hesitated to post, in that I have absolutely nothing positive to report. Things went from bad to worse very very quickly. I dont know what happened to us. I say "us" because I know what is happening to him, and as very recent bloodwork confirmed, he is having a flare. His medication was adjusted slightly (dosage increased) and I hope and pray the adjustment does the trick. How long does this generally take?

He is absolutely exhausted, and has been travelling on business this week, which has done nothing to improve the situation. Whenever one of us is away on business there are countless text messages and phone calls each day. All of that has come to a grinding halt. Our relationship is practically unrecognizable to me. He keeps telling me that he loves me, and is sick and just needs "time". TIME? For what? He insists that when he has a flare (which hasn't happened in the year+ we have known one another, I suppose because the medication is working well) its not uncommon for him to become intraverted and withdrawn. He just needs to chill on his own until he feels better.

I just dont understand.

Why wouldnt he want me with him if he isnt feeling well? We are really close, and he's pushed me so far away, I am afraid that it will be difficult to get back on track. Above all I am terrified that this flare will last a long time, and I miss him so very much. I feel like I lost my best friend.

I think my next step will be to find a support group close to where we live on Long Island, just so I can get a better grasp of what and why and how this illness will effect our life together. I'm pretty freaked out.

-Lisa

 

[Katharine]

Hi Lisa,

I know that when I am feeling ill I can become rather "anti-social". I feel this need just to be alone, to actually do nothing, to sleep, to just be me. The slightest demand on my time or thoughts is resented and just all feels too much to deal with. I can imagine that for those around me that can be difficult to understand. My ex husband didn't understand it at all, even when I had tried my very best to explain. He wanted me to constantly tell him how much I loved him. I felt I was being forced to prove myself and swear allegiance :lol:

Thankfully my now hubby does very much understand. He is also a pretty private person and will also go quite silent if something is bothering him. He knows that when I'm ready I will talk to him but that trying to get me to before will only exhaust and upset me.

It take time for lupus sufferers to come to terms with their disease and with the shattering frustration and disappointment each flare will bring. It also, understandably, takes time for their families. I should imagine your boyfriend is feeling even worse for not at all wanting to be like he is and trying to protect you from it. It will be difficult for him to put into words what it is like especially as we all get used to people not being able to comprhend what we go through.

I should think his situation is made much worse too by having to work through this. For many of us work becomes out of the question in a flare and very much an uphill struggle to keep going.

The only thing you can really do is be patient, understanding and loving. It all sounds so easy but it is very hard indeed.

I wish you both all the best and hope that the meds provide some quick relief. If he has been put on a short course of prednisolone that will work quickly. If not, it may be an option to consider.

Katharine

 

[raggedyann1]

Lisa,

I imagine that being a man with Lupus adds even more to the psychological side of living with a chronic disease that mostly occurs in women. I know that the fear of rejection runs high in single patients. Most people we know truly don't understand and unfortunately many of them never try to understand. We often feel judged as lazy and complainers. I know that for me, in the early years when I worked, that a flare meant shut down from everything except that I had to do like work. Please don't push him right now. I certainly would send a text message or leave a voice mail telling him that you love him and wish that you could help. When he is feeling better would be a better time to let him know how you have been feeling through this.

Take care,
Karen

 

[Lisa'sLearning]

How long does a flare last?

I dont mean to sound ignorant about this illness, but is there an average length of time that a flare will last? I imagine it depends on whether the person is medicated, but with adjusted meds and rest - what are we talking, a week... two weeks... longer?

I've been completely shut out He's offered plenty of apologies for puting me through this, but will not consider allowing me to be with him through the flare. He has made it crystal clear that he is sick, needs to be alone, and I am only stressing him out at this point - which, as I know, is not healthy.

I just miss him so much.

L.

 

[lisa_gavi3]

This is my first time also, and i have been dating a great guy for over a year now and having same problems. He has lupus and its great to know that they do pull away. He stops calling and just goes away. i am trying to learn more
but this must be a symptom that they pull away even though i tell him i am there for him. I never understood the time he did not call for a month and he must of been going threw a flare up i am just learning. LISA New Mexcio

 

[Katharine]

Hi again Lisa,

I'm afraid no-one can tell you just how long a flare can last. Also there are very different degrees of flare. If he is in a severe flare he should go back to the doc and complain a lot more until he gets short term relief such as that he would get from prednisolone.

What meds has he been given extra to help him?

For the rest, I'm afraid the only answer is patience but he will come out of it and the fact that he was doing so well is very positive.

sorry we can't help more, but everyone is so different, as are the manifestations of the disease,

:hug:
Katharine

 

[sadieone]

Hi Lisa,

You are a wonderful fiance to care so much for your loved one. A support group for the 2 of you is a great idea and highly recommended.

How long will a flare last?? I hate to say it could be from a few days to years.

Since his lupus has been in remission before i would like to think it shouldn't last too long...... a week or 2 or 3 or more.

I'm thinking he may be embarrassed at his weakness now and want to try and recover quickly for you, so you won't worry, is the reason he is not allowing you to be wit him through the flare.

When in a flare there isn't much we can do,,, walking is difficult, talking can be confusing and lose concentration.

REST is the only thing that can make one feel remotely better.
I can't imagine how he is handling work and this flare. I can barely handle feeding the dogs when i'm in a flare.

Be patient,, comfort him with actions and not words. When he comes home,,, let him know it is i ok to lay down,, feed him,, take his vitals,,, let him rest,,, sometimes saying nothing says more.

I know when i'm in a flare i feel helpless,, useless, less of a person, because all of my natural activities,, walking,, bending,, staying awake doing anything has been stripped of me and it has become too difficult.

I can't imagine what it feels like to be a man,, bread winner,,, head of household and feel like that..
The more rest he gets the quicker he will get out of this flare.....
Make sure he has everything he needs,,, if something is to difficult for him to do, just do it for him he may not want to ask for help..

Its difficult to explain what we go through in a flare,,,, here is your golden opportunity to study how your future husband acts and reacts during this time so you can be even more supportive the next time.



Oh yeah,, don't forget he is a man,,, he may not even know what he is going through or how to express it. If he says he loves you and you believe he does than don't push it. Stressing him out over how you are feeling now won't make things better.

Support group is great,,, counseling is great too..

Good Luck
Take Care

 

[Lisa'sLearning]

Thank you so much for your encouraging words. Unfortunately, we do not yet live together, and even though we are only about 20 minutes away from one another - he wants absolutely nothing to do with me right now. I dont even recognize this man.

I layed in bed this morning and thought about the week before this flare began. All the things we did, the meals we cooked, the things we talked about, the restaurants we ate at, the friends we socialized with, the shows we watched, the laughing, the loving, the life that now seems like a life-time ago.

And as much as I miss him, it breaks my heart to think that he is alone, sick, and there is not a damn thing I can do to help him, even just to make him more comfortable. Because he wont allow me to.

Lisa

 

[Joandublin]

Hi Lisa

I just wanted to add my two cents worth. First of all I am really sorry that he is excluding you so totally in this way. It must be devastating for you:sad: While I can understand someone wanting to be on their own when they are feeling very ill, I can completely understand your desire to be there to help or support in any way you can. Personally I think he is being very unfair to you right now - flare or no flare.

As others have said there is no way to predict how long a flare will last. The unpredictability of Lupus flares is about the only predictable thing about it. That doesnt help you much but thats the honest truth of it. However if he is continuing to work and not taking some time to rest up , then the likelihood is that this flare will last longer.

Your fiancee may well recover soon and expect everything to return to 'normal'. Of course I'm sure you realise that after this episode things can never be 'normal' again. You clearly need to set aside time to talk to him about the way he has excluded you totally from his illness. You can't force him to do this but you can certainly insist that this discussion happens if you both want to stay together.

I couldnt imagine being in your situation. I would feel so helpless and angry. Yes - angry. He hasnt given you any opportunity to discover how you might deal with your relationship while he is flaring. When you get married and live together - whats going to happen then?

Unfortunately, for now, there doesn't seem to be much you can do about the situation except find the support you need and educate yourself. Thats what you are doing and well done to you for that. You could offer to come over at weekends and cook a meal for him or maybe tidy up or something. Perhaps tell him you would like to give him some practical support and dont focus on the emotional deficits right now.

I hope that soon you can both find the space to look at what's happened together. If you are to have a future, you will both need to figure out ways of dealing with bad times that dont involve hurting or excluding each other.

My warmest wishes to you and your fiancee
Take good care
Joan:rose:

 

[Lisa'sLearning]

Great News

Good Morning All....

(At least its morning from where I sit in my office in NY) I am in the best mood I have been in since the beginning of his flare. He is FINALLY seeing his doctor today at noon. I am experiencing so many emotions. Optimism, anxiety, and a sense of relief mostly, since I am hoping and praying that this will be the beginning of the end of the flare. This morning, I jokingly told him that when he is finally feeling better, I am going to kill him for puting me through this!

I am the Director of Marketing for a publicly traded company in NY and have had my hands ridiculously full at work for the last few weeks. I think that's been a blessing, though. This week will be significantly less hectic for me and I am looking forward to a long Easter weekend. I am taking Thursday and Friday of this week off. I am hosting a family dinner at my home for 28 guests on Sunday... and I would give anything to have the love of my life present and feeling better.

Which brings me to another topic. I understand *or am taking steps to better understand* this illness. I have not had an in-depth discussion with anyone outside of my immediate family yet. I'd rather not do this at a holiday celebration. Can anyone comment or share how they have effectively communicated and explained Lupus and symptoms to those not directly affected by it.

Fingers crossed for a productive doctors appt today. -L

 

[Joandublin]

Hi Lisa

Thats great news about him seeing the doctor. I hope it is the start of him opening up a bit to you about whats going on.

There are a few 'pinned' notices on the Family and Friends Forum with 'letters' to 'normals' that you might find useful. Here are the links to them:

http://www.thelupussite.com/forum/showthread.php?t=36086

http://www.thelupussite.com/forum/showthread.php?t=67968

And here is a link to 'The Spoon Theory' which you also might find helpful

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Heres another link to a website that is presently still under construction but nonethless has some very useful articles and videos about Lupus. There is a cartoon video on it which explains very well how Lupus 'works' within the immune system.

http://www.dxlupus.org/Default.aspx

Best of luck for your forthcoming dinner party!

Cheers
Joan:rose:

 

[Lisa'sLearning]

Joan - thank you for the links....

A million thank yous. With each passing day, I am learning more. This board has become an invaluable resource.

Thank you.
Lisa

 

[Clare.T]

Hello Lisa
Very good news that he's seeing his doctor and I do hope he's feeling much better very soon. It's possible that he will get some immediate relief, for example by taking or increasing a medicine he might be on already or has used before called Prednisone.
It is very likely that some testing will be done to get a better idea of what's going on and make sure there are no signs of worsening overall disease and /or new symptoms either like kidney involvement, that could mean a new medication regime.

I have probably misinterpreted your intentions, because you can't seriously be thinking of talking about his lupus outside your own immediate very close circle without consulting him about what he wants to say and to whom ?
Most of us are very careful indeed in this respect for all sorts of reasons.

You and he are going to have a heck of a lot of very serious frank and probably painful talking to do.

All the best
Clare

 

[Taree]

A big Hello Lisa

Of all the different emotions that come through in your posts, anxiety in one, frustration in another, confusion in the next... the one that is constant in every one is love.

It is your first time dealing with this and it may well be the first time he's had to "share" a flare. I hope he feels better soon so you can chat and hopefully come to a mutual understanding and put this down to a lupy learning curve.

X T X