Married to my wife for 8 years, she was diagnosed with Lupus 2 years ago
Now first I bid You to excuse my avarage english skills it is not my native language, so bare with me.
The matter of concern here is centered around living in a marrige with a person that has very low energy in general. So how does this show in the life We share, my wife, our two girls age 4 and 8 and myself.
Well where do one start.. I have known my current wife for quite along time, since 1993 to be precise. My wife, that at this time became my girlfriend, have allways had tendecies, that I now, retrospecitively, can look upon as symptoms linked to Lupus. She, for instance, have allways had an abnormal need for resting and have had countless visits to various doctors for a multitude of reasons.
Today My wife has a university degree and is now currently working as a dentist full time. She has been able to complete her education and She is very happy and proud of her job. During the summer 2009 She was diagnosed with Lupus after a series of attacks or flares. For Her these flares shows as pain in the gastronomical region followed by rashes on her body (legs, arms, belly, chest) which again led to pain in some of her joints (fingers, toes especially). My wife was very lucky that she has gotten the best possible treatment that exists in our country, and is now being treated by the leading expert here. Now she is one of the 'lucky' ones in regard to the possible severity of Lupus in general. She has in other words a light version of the disease. Of cause nobody can fortell the future but this is what we have been told by her rheumatist. Ok and now I will continue with the next part that undoubtfully will make me look egocentric in some of your 'eyes'. Be aware that this only represents my viewpoint and not the viewpoint of my wife - this is obviously me as a subject describing things, so take it for what it is.
Both my wife and I have spend a long time finishing our education. Im currently writing my final paper at a university, going well and on time :-). I was previously working with childcare for a few years and decided, just before my wife was diagnosed with Lupus, to study for a candidate degree - this was, of cause, done with the acceptance of my wife after discussing it. Furthermore around this time my wife had a desire (a desire she had for a long time) to buy a house and around that time a decent offer appeared and We accepted. So at the moment my wife is the only one with a real income and is thereby responsable for the financial side of things - I do contribute but She has the overwhelmingly best income as a dentist (unfair ofc:) and thereby also the most responsible. And for this I am truly grateful. However this is the economical side of things and I see this as a completely seperate side from the emotional side of our relation.
Well as you might have guessed it is the emotional aspects of our lives togehter that, in my view, have turned complicated. I have to major concerns in regard to our emotional life togehter in our family. The relation between my wife and I and the relation between my Wife and my kids. These are of cause to some degree inter-related.
I could start with the problems I experience in regard to how my wife react, especially when low on energy I feel, towards our children. My wife can be a good mother to our daughters. No doubt. She takes our oldest swimming, for pianolessons, are good with creating social ties to other parents at school, thereby creating openings for friendships being build between our children and their peers. But when she is low on energy she, and she often is, she can become very rejective and controling to the degree of being condensating. I, having the background I have as related to kids learning and development, cant help become very dissapointed, dispasionate, aggrivated and generally feeling powerless when I see no or very limited improvements in this (her) behaviour over time. This has been the cause of countless arguments in our family. This has also happend in front of our children which ofcause is tragic. This last point however being one that we, in a span of a couple of years, have been allot better controlling.
But to make my point more clear in regard to my wifes abilities as a mother there are some atypical things I would like to point towards in regard to how our family is structured. When we had our kids and they were newborn, I was primarily the one sitting up at crasy hours. I was most commonly the one making bottles for them in the middle of the night. At that time my wife was studying. After she got back from her studies she allways needed a nap for 2 hours. I spend time with the children at those times. When she woke up there was only dinner and then an hour and a half with the kids before bedtime. But this was years before she was diagnosed with Lupus around about 7 years ago now. Today we have to children and often when she gets back from work she is exhausted. It is better now in comparance to before she was diagnosed and got into treatment. Back then she would go all gray/pail in her head and look quite sick. But the aggression that follows that seems to stem from the absolute lack of energy is hard to tackle. One thing is how she is unable to make an effort in regard to me (maybe in the sense of truely showing that she loves me), I dont know maybe this is a more complicated issue than it just being related to her illness :), but it is just hard for me to handle when she is disrespectful towards our children. She neglets them at times and tells em to go away. There have been a slight improvement in this regard, after we for years have had discussions about this, but still demon shows it face at times. I, being proctective of my children, dont react too kindly and understandingly to this behaviour. Trust me. My wife often says that she is sorry that she dosnt spend more time with her children. However then when the chance to do so arises she often pass out on it. For instance she would go to town instead and does some shopping or have lunch with one of her friends. My wife is often, when she is alone with her kids for longer periods of time, which again happens very very rarely, she often seeks assistance. Going to her mother or my parents that luckily lives quite close to us. Then there have been issues with apologising for her own children in advance when talking to other people. Dont know maybe this is just at typical mother related issue. Luckily I have been able to reduce that problem by confronting her with it. A few days ago the youngest of your girls was asked in kindergarden what she wanted to happen the most. Her answer was that she wished to have a mother that did not need to sleep as much as her did.
I our home im tuggin in my girls, reading for them and typically the one that takes em out for fieldtrips, walks etc etc. Also my daugthers share bed with me cause my wife has to have her sleep at night, of cause leaving me to sleep absolutely awfull having two small rhinos turning around 360 degrees repeadetly at night :-) And no I dont really feel sorry for myself in this regard. I dont feel that I am overburdend in any way. I just feel that my wife is lacking in some manner and that our kids are the ones thats being cheated of something. Sometimes I really feel like im the mother in this household. But the major issue is that I belive these issues makes me love my wife less. I think i search for a women capable of being the warm and self sacrificing mother for her children. I must say that this is something I feel that i have yet to truly experience.
Then there is the relation between my wife and I. Now I realize that issues in any marrige are probably or altleast potentially pretty complex in origin. This might also be this case in ours. However the ability or perhaps rather possibilty to be caring and loving is probably pretty closely linked to having the ressources and energy to do so. Oh well its probably just a marrige thing and a thing happening to allot of couples after knowing eachother for years and years. Things that have gone is the spontanious side of things and love being replaced by structuring of everyday life. I wonder if it is hard for people with Lupus to show love at times due to there absolute lack of energy. This can feel very draining at times on the counterpart. In any realtionship both parts need to feel that they are appreciated, I must admit that I somethings find that this supposed or hidden appreciation is quite hard to find. When the fatigue is at its maximum there is often only demands left and the need to relax and/or be left alone. Sex is something that is negotiated and often in the light that it shouldnt last too long. Due to, for instance, infections in the bladder region.
Well im not the type that is totally worn down by the tings I just mentioned. However I do feel that it is putting a very serious strain on our marrige and our family. Im not really sure as to why I did write this letter. Guess I just wanted to share my experiences.
Wish you all the best.