[MISSINGMYLOVER]

I am happily married 25 years this June. My spouse was diagnosed after having pericarditis (Spelling I''ll learn it?) in his late 30's. Then he had extreme sun sensitivity after that to extreme chills for a few days like a flu to alopecia. Eventually his aviation dr did the blood test when my very private/self reliant husband was told of the results. It seems he may have siblings who also entertain some of the symptoms which I have learned are multi faceted. However the worst symptom has been this gradual change in him. In his mid 40;s after starting his very stressful but successful company he seemed to withdraw. He is not a big talker (nor ever was) and I am sure had some male menopause symptoms since he is now 53. BUT, he is very different over the last 10 years and it is apparent but it has also been subtle to my mom and I think his mom seems him as short tempered.

I know there has been a lot of Stress for him, with our teenage children, my recovering from a bad fall and living with chronic pain due to spinal cord injury, to his high achievement needs and then that onset of these very odd symptoms. He will never complain though as that is him. He also deal with battling his own weight issues; a big man of 6 1 but about 40 lbs overweight which causes him to yo yo diet. As well his dad died last year of cancer which was multiple from an original prostate cancer and who had a blood disorder (a symptom of lupus and which my son has (thal Minor).

I love him so much and I have an amazing home and life and he has been extremely patient with me through my own health journey. Although I am very proactive and highly motivated too and try not to complain my physical situation has impacted our travel, our daily life and my inability to be spontaneous with last minute outings etc. In turn he has stress from this on top of his own.

I wish I could explain it better but it is like he has to withdraw himself. He is an amazing husband and lover but I feel SO LOST trying to understand his DISTANCING. I am sure this seems like nothing to most since he is far from abusive of any sort but it is SO LONELY when he gets in this mood.

I really miss him in his old form although I know I can deal with these changes in him if I have a little ammunition to know it is not directed at me or caused by me. I just need some moral support understanding what I can or should do or shouldn't. He is very loyal; he is very morally based type of guy and does tons of stuff helping others without getting accolades for it.

I hate to complain but I need to get through the next 25 years of our life together - I am hoping - and figure out what this psychological change/state of mind is about.

Any suggestions or support would help. My children say he is now unapproachable, he won't talk and yet they know what an amazing kind person he is. If I confront him about the symptoms as part of lupus he gets very defensive and says he accepts the changes in me. I know he has had to live with my seven years of pain and its impact on our family. We are not about to break up over this but I just need to understand this symptom or what I can do to embrace this new change in him without it being a sore spot in our relationship.

Many thanks...please give it to me straight as I am a very science based person and I am very strong about coping with things but some direction from those of you who understand this symptom/change from the Lupus disease would be appreciated.

Thanks...from a:worried: sometimes lonely partner

 

[dixy]

gosh dont have any answers. I can relate to you though my husband has major back problems and has put weight on and I find its hard to support him. As I have sle its a shock to the system having your health taken away. I feel guilty like you as it has effected the family. my hubby has become short tempered and angry. sometimes I think its me. He has become a great carer, but like you. I want my old life back.
perhaps if you can turn it around telling how much u miss him and love him. Just try and ask him how he is feeling. Maybe he might open up to u. Just pick your moment.
all the best
dixy

 

[sam101360]

My Goodness, I am sorry biu I have no sage advise to offer here. I do tend to withdraw when my pain levels increase or when test results are dissapointing...however I am a gregarious person so it only lasts a bit and most people don't even notice the change.

I wish I could offer you some advise and support, and I hope someone with better insight comes along to help you.

Much love and warm (((HUGS))) stephanie

 

[Barb G]

Some of my thoughts after reading your post:

1) Your husband's withdrawal may or may not be due to lupus or other health problems

2) Some people are introverts by nature and need time alone to recharge their batteries, so to speak. The more stress, the more time alone needed. Health problems wear one down psychologically as well as physically and is a form of stress so yet another reason for time alone. Extroverts perceive an introvert's need for time alone as withdrawal or depression because extroverts need to be around people to recharge, to feel better.

3) Health problems can make one extremely tired and one can not physically rest if one is engaged with others.

4) One must go through a grieving process when one has chronic health problems. The grieving process is different for everyone and everyone must be allowed to work through the process at their own pace or they will not be able to successfully work through it. Part of the grieving process is coming to terms with what is and letting go of what was and what one wanted that they may no longer be able to achieve, making some adjustments and coming up with a new game plan.

5) Depression may be a part of the grieving process and is normal unless it starts to affect one's health and well being. Depression is different than sadness and grief ---- many people confuse sadness and grief for depression.

6) Because your husband is a high achiever, he may feel like he's failing (failing not only his family, friends, employees, and customers but himself)

7) The economy is very bad and could be impacting your husband's business and/or his personal finances and/or the family's finances in ways you do not know or understand and which may be contributing to his need for withdrawal and/or depression. If this is the case, outside help from other professionals will be required ASAP. Do you know much about the business and family finances?

Just some thoughts ---- I'm a former social worker with chronic health problems including autoimmune disease and my husband has his own business so I have lots of knowledge and experience with everything I've outlined above. Be patient, listen, don't judge, learn as much as you can, seek outside help if needed.

Best wishes,
Barb

 

[Lily]

Hi,

I'm sorry this is putting such a strain on your relationship as a couple. Some of the previous advice is very good as far as possible causes.

I'm just wondering though how well his actual disease is being treated?

What meds is he on and is he good about regular check-ups with his doc and talking to his doc about his symptoms?

Communication between doctor and patient is essential with this disease. It's so individual, so unpredictable, so complicated to treat at times and unless we have a good relationship with our Rheumatologists then it's difficult for them to give us the care the disease requires. If the disease is not treated adequately then our quality of life is not half of what it should be. That can make for a pretty miserable existence, often not obvious to others as we can look so well but on the inside we are far from it.

Another consideration is his knowledge (knowledge is power) of the disease and whether his doctor is as knowledgeable about treatment options as he should be. Not all Rheumatologists are created equal, many know very little about Lupus. GP's as a general rule are not equipped to deal with our disease either, a specialists care is needed.

Hope some of this and the preceding ideas give you food for thought. If there's anything else we can try and help with don't hesitate to ask

love
Lily

 

[MISSINGMYLOVER]

THANKS. YOU HAVE ALL GIVEN VERY CONSTRUCTIVE SUGGESTIONS, ADVICE AND SUPPORT.

I THINK ONE POINT IS VERY SPECIFIC IN THAT HE IS PRETTY MUCH IN DENIAL ABOUT THE LUPUS; DOESN'T SEEK OUT MUCH MEDICAL ASSISTANCE AND ATTRIBUTES HIS POOR DIET AND ITS IMPROVEMENT AS THE CULPRIT FOR HIS SITUATION BUT GENERALLY WORKS VERY HARD AT IMPROVING HIS DIET.

ALSO HAVING LIVED A CHRONIC PAIN LIFE MYSELF FOR SEVEN YEARS I THINK IT IS VITAL FOR ME TO BE ABLE TO SEE HOW MY SITUATION TOOK ME QUITE A WHILE TO ACCEPT AND REALIZE I NOW LIVE WITH A CERTAIN TYPE OF DISABILITY WHICH I MUST INCORPORATE INTO MY DAY AND KEEP MOST OF IT TO MYSELF FOR THE MENTAL SAKE OF MY FAMILY. LIKEWISE MY HUSBAND IS PROBABLY GOING THROUGH THE SAME JOURNEY IN TRYING TO UNDERSTAND HIS SITUATION.

I REALLY APPRECIATE YOUR INSIGHTS... I USED ANOTHER TYPE OF MEDICAL HEALTHBOARD TO HELP ME REGARDING MY SPINAL CORD SURGERIES IN 2003 AND 2004 WHICH ALLOWED ME TO GET CONSTRUCTIVE, REALISTIC INPUT FROM OTHERS COPING WITH THE SAME SITUATION.

MANY THANKS...I FEEL VERY MUCH MORE ENLIGHTENED BUT THE ONLY REMAINING QUESTION I HAVE IS JUST HOW LUPUS AFFECTS THE BRAIN RE; DEPRESSION, MOOD SWINGS, BRAIN FOG. MY HUSBAND DEFINITELY GETS BRAIN FOG AND I LIVE NOW WITH A DAILY RECITATION BEFORE HE RUNS OUT THE DOOR FORGETTING HIS OWN OFFICE KEYS. THE STAFF THINK HE IS JUST FORGETFUL BUT IT CLICKED IN HAVING READ THIS FORUM THAT REALLY HIS EXTREME FORGETFULNESS MAY LIKELY BE JUST A SYMPTOM AND ITS MANIFESTATION IN THIS AREA.

RE; FINANCES ...I AM PRETTY ON TOP OF THINGS AND AS WELL HIS COMPANY IS IN THE SOCIAL SERVICES SECTOR SO HE DOES BETTER WHEN THE ECONOMY IS BAD LIKE NOW...HE IS MUCH BUSIER AND OUR INCOME GOES UP. HOWEVER, WE ARE TRYING TO DOWNSIZE OUR HOME AND MOVE OURSELVES TO A SMALLER HOME AND SET UP A HOME FROM SOME LAND WE BOUGHT IN THE CARIBBEAN SO WE HAVE LOTS TO LOOK FORWARD TO. HOWEVER, I AM TRYING TO REMOVE ANY FINANCIAL STRESS THAT MAY EXACERBATE HIS STRESS LEVEL OR MINE FOR THAT MATTER.

SO THANKS...I'M POURING A GLASS OF WINE TO WATCH A GOOD MOVIE WITH HIM TONIGHT AND FEEL MUCH BETTER KNOWING OF THE INFORMATION YOU REMITTED.

...A HAPPIER WIFE :lol:

 

[LolaLola]

Hello, Somehow I missed welcoming you here. I am glad you are feeling a bit happier. Having had those years of chronic pain yourself has certainly given you insight. I am just wondering if maybe your Husband keeps quiet partly because he feels his pain is nothing compared with yours. My Husband tends to do this. He has Osteo Athritis pretty badly in his knees, but rarely complains as he says it is just one part of him and I hurt all over! I tell him that thinking like that still will not make his pain go away, and , like you, I try to ensure that he gets the best treatment.

The Yo yo dieting will probably not help him to be alert mentally. There is also the possibility that he may have APS (sticky blood)- which can go with Lupus. It would be good for you to know if this has been tested for. If you look it up here,you will find plenty of information. You may also find it called Hughes ' syndrome after Prof. Graham Hughes. Generally it is easily treatable.
Hope this helps a little.
x Lola

PS Well Done for coping with your own pain and having some strength and compassion left over.

 

[keebler]

Hi and welcome to the forum.

Stress for us with lupus means pain. The weather changing makes some of us have pain. (my body is a good weather forecaster) A lot of us a very sensitive to the sun. The lighting in our houses, stores etc. makes for pain.

People look at us and say boy you are looking good. If only they could see what we are going threw on the inside.

My brother has SLE (I am a female) Men have grown up with they are the provider they look out and take care of their family. Accepting the diagnoses of lupus takes a very long time. I don't think I have totally accepted that fact. Although I have learned to live with it. No one wants to live with a chronic illness that there isn't a cure for. That alone can hit you like a ton of bricks.

You have to be tuned into your body. When you cant go any further you have to rest. If you don't it only means you will feel a lot worse in the end.

Seeing your doctor is a must when dealing with lupus.


It is great you are learning about lupus. Please tell your husband that he is welcome here too. It might help him to know that we understand how he is feeling.

Take care,
Lyn

 

[Barb G]

You asked how lupus affects the brain. The answer is it may or may not affect the brain. It depends on the type of lupus, the severity of the disease, etc. Only a qualified neurologist could say for sure whether your husband has the type of lupus that affects the brain. Brain fog can be present for someone with lupus but it is also a symptom of other diseases.
Also, your husband is 53 years of age. Forgetfulness is normal at 53 years of age. Almost everyone forgets keys and needs to have lists to remind them of everything they need to do once they hit 53, so the forgetfullness you describe may be entirely normal or may be enhanced by chronic illness. It sounds like you want to be informed so that you can help your husband as much as possible. This site has a wealth of information. Be sure to read the content provided via the links supplied by the moderators as well as others. Some good books to read to help you understand the disease that may be available through your public library: The Lupus Book, Third Edition, by Dr. Daniel Wallace; The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance and the Cutting-Edge Science That Promises Hope by Donna Jackson Nakazawa.