When Both Suffer a Chronic Illness

My husband recently received a new diagnosis.  It's quite interesting how the whole diagnosis went about, well not interesting per se but quite typical of my husband.  He had mentioned that he had some sort of wart-like sore on the skin between his thumb and forefinger and that he picked at it and it just got worse.  When I finally looked at it, it looked very cracked and looked like it could have been very well infected.  I immediately told him he needed a doctor because it looked bad and I didn't want him losing a hand (half-jokingly).  A week went by and since I hadn't heard anything else about the hand I assumed that it had healed up on it's own and everything was great. 

"Honey, look at my hand"
"GAH! what the heck??! did you not go the doctor?"
"No, and look at my finger on my other hand"

By then, I knew something wasn't right and he had some kind of problem going on.  I really had no idea what it was but I knew he had to get it checked out.  I took it upon myself to find him a dermatologist (I referred him to mine but it was too out of the way for him so I had to find him another one). 

Long story short, after a couple of dermy appointments, and 2 biopsys later, he received a diagnosis of psoriasis.  Since then, he has also had elbow rashes and one on his lower 'erm' backside.

Another fact about psoriasis is that 1 in 20 actually develop psoriatic arthritis.  Yes, I've read up on it and yes it's pretty bad.  My husband has been complaining of back pain for a couple of years and has maxed out his chiropractor allowances through our insurance.  He has also mentioned that he also has joint pain when I say I'm hurting.  I mentioned before that I thought it was his was of being a little facetious but one has to wonder now.  I'm trying to get him in to see a rheumatologist.  He told me he will just tough it out.  I don't think it's such a good idea given what I have read about psoriatic arthritis and it's progression.  I guess I will just have to keep working on him.

He doesn't worry about much, that is one of the reasons I love him so much.  He is so carefree, but I hate to take the burden on myself all the time.  Another issue I worry about is our son.  I did have concerns for him when it was just me that was sick and what I would pass down onto him but now I am quite concerned (and feel so guilty).

It Takes a Special Person

I consider myself lucky.  I didn't always think like that.  In fact a few years ago, I had a major chip on my shoulder.  A chip I believed was justified because, well, my husband just didn't care that I was sick.  I couldn't have been more wrong.

Those of us know what it's like to live with a chronic illness day in and day out.  It's a battle and we muster what we can to get through it mostly only worrying about today.  We deal with the pains, the fatigue, even the more serious ailments if that's happening at the time but mostly it's just about getting through until tomorrow which will be better because, well, it has to. 

For most spouses and partners of people with chronic illness, it is not that cut and dry.  Living and loving someone whose faced with an uncertain future hits hard on them not only on a physical level but also on an emotional level.  Some may not show that emotion because they believe they must be the strong one.  They keep it in.  Unfortunately, sometimes we (the sick ones) mistake that for disregard.  Sometimes we need to step back and feel what it may be like in their shoes, the physical pain may not be there but their heart may be hurting out of helplessness or sympathy.  I know for me personally, it is so much easier for me to be in pain than to see the people I love in pain.

My husband may not outright ask me about how I'm feeling all the time (although he does ask me from time to time as I do him).  And you know unless I'm in really bad shape, I don't want it to be the topic of our conversations all the time.  A few examples of what he does do is remind me that I really should be in bed because I need my rest or rubs my back when he thinks I'm sleeping.

I have felt the guilt more than once just about being sick.  And even though I fall into the mild to moderate category, my disease is very unpredictable so I laid it all on the line for my husband about the worst possible things that could happen to me and the aftermath.  I gave him outs, outs, and more outs... I never wanted him to feel like he should be the one to suffer from this unfortunate situation.  That he could actually have a good life.  He was hurt, hurt that I ever could think that he would ever do that. "We will always be together" he told me.  Never again did I bring it up (not seriously anyway).

Unfortunately this isn't always the case.  I've had friends with illnesses that had spouses that just couldn't deal with it.  They were verbally and/or physically abusive, adulterers, or just took off and left all blaming the 'hardship of the disease'.  This breaks my heart but I hope my story encourages those who have been through those situations or have yet to meet that special person that there are wonderful people out there that look past all of that and see the PERSON and not the disease.

For those of you with loved ones - partners, spouses, family:
-Stop and let them know how much you appreciate them for just being them. 
-Don't let the disease be the 3rd wheel in your relationship, know it's there but don't let it have a spotlight.

Wanting to Make a Difference

World Lupus Day

I have my purple on today and my “Someone you know has Lupus” bracelet (last year’s model) -I really need to get the new one-.   I have my Facebook profile picture set to the World Lupus Day picture.  That’s really as much as I can do.  I really wish that I didn’t have to keep my illness hidden.  It’s a shame that the fear of my work finding out makes me feel like I’m living a lie about myself.  I want to do more to spread awareness and I feel like I fail all of us Lupus sufferers because I have to be so quiet… that I’m a hypocrite to be an advocate to support awareness but I can’t do much myself.  I think that I will be looking into some volunteer opportunities that I can do which will not put me in the spotlight but will allow me to make a difference.

My Mother’s Day…

Well I’m a tad late but I hope that all the mother’s and children of mother’s and mothers of fur babies and so on had a lovely day on Sunday.  Mine was great with the exception with both of my husband’s mother and my mom out of town (we did send them beautiful flower arrangementsJ).  We did the usual take Mom (moi’) out for lunch which was really nice.  My enjoyment out of it was not so much to honor me but I just love the time spent with my boys.  With my son as a teenager, he pretty much likes to do his own thing so it was really nice that we all got out as a family.  We had lunch on the patio at this nice little Mexican restaurant.  Afterwards, went home and put my feet up for the rest of the day.  Ahhh… and you just know I had to squeeze a nap in there. 

My husband actually managed to do a few loads of laundry and some dishes… score!

Chronic Illness and Communication in My Marriage

I hear differing views on this subject on whether you should open up to your loved ones on how you are feeling or just keep it in.  I really don’t complain about my pain and fatigue however sometimes it’s pretty obvious when I’m taking the opportunity to steal some time for some much needed sleep when I can or when I clean a room in the house and pretty much am done for the day (or at least the next few hours).

Many people say it’s important to share with your spouse or partner exactly how you are feeling physically when you are chronically ill but I always worry that would get old and not mean much.  I personally also battle with the fear that my husband will see me as an eventual invalid that he will have to take care of someday (irrational fear – I’d say so but I deal with past abandonment issues growing up that I may save for another blog entry another time). 

We have been together since high school, the healthiest days of our lives.  THAT HEALTHY PERSON is the person he chose from the beginning (yes, that kind of crap goes through my head all the time – especially at my weakest and lowest self esteem moments)

So needless to say, I keep a lot of verbal complaints to myself.

I’m not sure if it’s the best thing because when I do get pain; my husband looks at me like it’s coming out of nowhere.  He then ‘empathizes’ with me and tells me that he feels the same sometimes. (The tone seems to have a sarcastic hidden meaning behind it, as if to say ‘everyone gets pain’)  That it’s probably better to push through it.  I think it’s the athletic mentality in him to give this advice but probably not the best advice in my case.  Regrettably, I do push through… then PAY for it later.

I wish I had the inner strength to sit him down and tell him what this is really doing to me physically and psychologically.  He has gone back and forth in his reactions, sometimes with sympathy, sometimes as if he thinks I’m just overreacting… I’m just not sure if its denial or just what it is.  I have put myself in his shoes and I honestly cannot say how I’d react without actually being there so it’s hard for me to judge. 

So I pretty much just keep my mouth quiet, it’s the non verbal words that are the hardest.