At first I really did not totally understand this until I immersed myself into reading various things on the internet. And even at that I didn't really "get IT". It was when I discovered this Healing Well site that I was literally "blown away" and just read various threads for hours and gaining a real understanding. The honest and
open communications that are shared I found to be so helpful.
Most of us think when someone is ill with something - get it treated and get it over with. To fully understand and grasp that this is so different for everyone and everyone is at different levels with their flares. The trial and error aspect with various meds and the time it takes to see if a certain medication is helping or not and if it doesn't on to a different one. The more and more time that goes by with no relief and add the fatigue, pain, inability to do some of the simplest tasks and needing to depend on others more than you ever needed to makes it tough.
We had a phenomenal life and marriage up to this point. We had been retired for almost 4 years and having the time of our lives and WHAM everything kind of came to a screeching halt a little more than a year ago. We are in "the sickness and in health" part of our vows now we joke about
. We have been together for 39 years and so blessed to have had no serious health issues up to that point so I got a little annoyed here and there (selfish) in the beginning before I really got to understand what this is all about
. I still get a bit aggravated and tired having to do almost everything by myself (housework, shopping, meals, keep track of the meds, & personal secretary keeping all this stuff straight)...but I'm lucky that I am healthy enough and can do it so I just have to keep telling myself to "knock it off" and just do it. What if I was sick too? Then we'd be in a real mess - so we are lucky in that regard.
I am not sure how you get your husband to the point of delving into this more to gain a better insight of what you are going through and better understanding of this unpredictable illness. If he would read this forum I am sure it would make it make more sense to him.
It is kind of normal to be a bit annoyed, selfish and aggravated when you go from living life with no real worries to an about
face and spending almost every moment thinking and worrying about
your spouse and what you can and cannot do as a couple. Planning things and having to cancel at the last minute or not making plans at all for fear you might not be able to follow through with it.
However the healthy person does have to take a step back and realize what the UC sufferer is going through too. My heart breaks for him and for everyone here suffering. So when you get those "good days" and the much sought after remissions you are all working towards... when you get them enjoy it.
My husband is at the end of one of his best weeks he has had in a long time. It has been a joy to see him feel and acting more like his old self. Not sure how long it will last - but while it's here we're enjoying it.
Good luck trying to get this all sorted out and getting your husband to try to gain a better understanding.
60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07 July 07 good days & bad days 75mg Imuran 40 mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg