Diagnosis: Thick Headedness
One of the things that really bugs the crap out of me is when my wife does stuff that she KNOWS she’s not supposed to do. I don’t know if this is a common frustration with other people who are living with someone who has lupus, but I have a hunch that it is.
Heads up, loved ones with lupus! It really pisses off the people who love you and want you around for a long time, when you do dumb things to your body! If your doctor tells you not to lift heavy stuff because the discs in your back are permanently damaged, then don’t lift heavy stuff. If you are supposed to drink water so your kidneys are healthy, then drink some damn water instead of green tea lemonades from Starbucks, especially late at night when you already have insomnia!
I totally understand wanting to live your life without being hindered by your illness. We that love you wish that you could do so, but the truth is you cannot. That day in the sun at the beach means a week in bed, and carrying the vacuum upstairs means that you will spend the evening in even more pain than normal. Helping your perfectly healthy sister means that she gets a break and you’ll need pain patches for your back.
Your loved ones want you around as long as possible. Please help us take care of you.
Hey, I can totally relate to this post! I read it aloud to my wife this morning and I think it really hit home with her. She has a blog that is more about her 2 passions: scrapbooking and Sabres hockey than about her disease but it certainly plays a role. She reposted your post from today here: http://isthismylifereally.blogspot.com/2009/09/my-husband.html
A word of warning, some of her other posts (not this one) may contain some ‘salty’ language so if anyone is offended by such things, be forewarned.
Jay
I love that you love me so much however in this case I was trying to be proactive and feel better. I knew we had a long weekend coming up and I wanted to enjoy it with you and Ben but more important I wanted you to enjoy the weekend because you have been so worn out. I can not make excuses for the heavy lifting or intense cleaning for that we, yes I said we, are paying. (but isn’t it a little nice to have a clean house?)sorry for that but the headache was completely unexpected.
In the past as you know the Doctor has encouraged me to take B12 and even get the injections and in the past I have felt better after them. For some reason this time it has had a completely adverse reaction. I can’t remember the last time my head has hurt this badly.
Ok I am going to go a bit OT but it sort of relates to your blog. I understand your frustration about biting off more than I can chew because yes I do that. That is who I am, that’s who you married. I am working on that but you need to give me some slack about the shot and the headache.
I can’t begin to understand how hard it must be to be married to me. Not only do have 7 AI diseases and counting, but I live in the land of “It’s all good”, I have the dreams and goals of an entire army, I am a control freak and am extremely feisty. All of that certainly warrants frustration but not being sick.
I believe the hardest part is the fact that there is nothing you can do to help me or to change the situation and I am so sorry. I cant even handle when you have an allergy attack and I can’t help. I just wanted you to know that I get it. here’s what I need you to know; when I tirelessly research “a cure” or take supplements or act normal it’s because I too am helpless and need to feel a since of control. I am not trying to upset you, slip farther into denial or prove anything to anyone. I am just grasping at a moment to feel normal so I don’t slip away into some crazy dark depression. I will try harder not to have so many of those moments.
Thank you for loving me so much. You really are my hero. (ok now you can delete this so people don’t get bored or have to endure to much mushy stuff. xoxoxox)
Ack no don’t delete. I’ve recently been diagnosed with Lupus and this strikes so well on the feelings and situations my husband and I are now being asked to cope with. It’s great to know that we’re not alone in this. The stress of just dealing with daily life now affects our family in ways we hadn’t imagined before and the guilt associated with: a) not being well enough to do simple things like clean and b)doing those things anyway so that your spouse isn’t carrying the full load which ends up affecting your health. Either I’m feeling guilty and letting my husband clean, or I’m doing the work and feeling bad as a result (oh and feeling guilty for feeling awful all the time).
I so get all this. I also go through the guilt of putting to much on a husband that works a full time job (12-14 hr days) just to meet the needs of our family. I do have 3 boys under 13, but they are children and hate all chores. It has been a long 4 years watching me lose the life I had before. I was very active hiking and camping working full time and taking care of everyone else. I am learning to slow down, but I still want to be human.
Thanks for the site where we can all vent and understand each other.
I am 46-years old. I self-diagnosed my SLE in 2002 – a sunburn that lasted 6 weeks was the tip-off. (My mother was diagnosed with Discoid Lupus at 60.) My sister tested with a high ANA in 2002, as well. She almost lost her life when Lupus attacked her lungs in 2008. I’m well versed in the many ways Lupus can manifest and have experienced every symptom-to-date. Adrenal gland failure was my low point in 2008 – blood pressure dropped to 60/34. A couple of ICU visits in 2009. Currently on Cellcept because my panel and C3/C4 is out of control. But, I have hope…because I still have too much to do in life.
I was a very “Type A” kind of workaholic that throughly enjoyed the stress and demands of a 60-hour work week. I traveled a lot for my job without issue. I could arrive home on a Friday night after a week away, unpack, do the laundry and clean the house, repack and head out on Monday morning to board a plane and get the next event going while I was flying across the country. Now, I struggle to get out of bed to make breakfast for my 5-year old. I was couch-bound due to lack of interest (depression – I’m certain) and energy from January thru October of 2009.
Although I appreciate now having more time to spend with my son, I so miss the days of not having to talk myself through just doing the most basic things. So, maybe it’s “thickheadedness” and maybe it’s just wishing to have my life back. I know when I’m overdoing it. But, every now and then I just want to be the self I used to know and my family counted on. It’s like the “real me” doesn’t exist anymore.
It’s so scary not to remember things. Names, words, places, memories…all gone on occasion. Terrifying. As much as I try to pretend the meds will eventually fix things, I know I will never be the same. So, please don’t get frustrated with your loved one when he / she seems to be pushing limits. It’s probably more a “testing” of themselves and wanting to be what they were before this devasting thing happened to them. To see what is left. Have patience, let them be. And, when the day is done, give them the biggest hug and let them cry. No pity; just support. It’s hard being us.
Good luck to us all…