Thursday, February 24, 2011

MS Misunderstood

Finally finding a couple moments to sit down at my computer this evening I can't believe all that's happened since I last posted. It seems after coming home from the hospital the whole house has been sick. So much has been going on its no wonder I'm feeling overwhelmed and I find myself questioning if I too, am starting to relapse. I find myself having more and more pain and weakness and my cocktail of drugs just isn't taking the edge off or slowing down the symptoms of this darn disease. I am one of the lucky that doesn't have insurance and hasn't been on anything to slow this disease down. I did on two occasions make an attempt of Copaxone several years back which only made me sick as a dog. That being said I push forward like I always do attempting to hide any imperfections I may be showing.

Just a couple days ago while helping my oldest son look for a new vehicle I found myself laying on the ground after a fall. Looking back I'm not sure if it was more painful or embarrassing at the time. All I could think of was to get up before anyone seen  to avoid further embarrassment. As I tried to stand I found myself crawling as fast as possible through the snow until finally reaching a vehicle and eventually pulling myself up. I did later tell him only because I was in pain and needed to make certain beyond a reasonable doubt my clumsiness wasn't witnessed. For some strange reason my boys would have found it hilarious to have seen. Not that they want me hurt by any means but I honestly believe that still after all this time no one understands my illness or its complete effects.

Just today my husband called and was extremely concerned about the dizziness he'd been having all morning. He then informed me I had no idea what this was like. Hmmm.... really? Now don't get me wrong I am very concerned about his health. To be completely honest, that's probably what has brought on my own relapse. I mean its not like this hasn't all been stressful on me too. I am so busy trying to keep his world calm that now I'm getting stress two fold. The thought that he believes I have no idea honestly upset me. If after nearly 7 years since my diagnosis he still doesn't get it; will he ever? It's no wonder no one else thinks twice about it. I mean here I am trying to learn everything about his heart disease and how as a family we can work together and he has obviously never taken initiative to learn about a disease I have suffered with for 7 years. I guess if you can't see it its not there.

It's not just the men in the family by any means. I was talking to the oldest daughter earlier. The discussion was in regards to bypass surgery she hopes to have.  She was explaining to me why she can't do certain things right now due to her weight. Oh, I see. Again, I find myself dumb founded. Now I have been over weight the past 20 years. While being obese definitely lowers my self esteem and makes life harder it has never come close to affecting me like the MS has. As I tried to explain that she says, "oh, ya, well I suppose". I swear I just want to pull out my hair. Why does no one get it?

I'm honestly not on a pity trip here I just wonder why can I never be sick? Someone always has it worse. Or looks at me like I'm faking. Maybe I should try this or that. Take this vitamin or some remedy they heard about. For Pete sakes if there were a cure or something that would work I would be the first to know. It would make national headlines and my doctor would let me know.

I look to my followers with MS and ask, am I the only one?



Nope, you sure aren't the only one! My four grown children pretend it doesn't exist, even though I use a wheelchair now more often than not. My friends think I just need to move more and I'll be better. No one truly understands this hideous disease unless they have it themselves. Then you know what it is like to have your leg buckle with no warning or get dizzy out of nowhere or be unable to pee even though your bladder is full or wake up with your whole body in agonizing spasms. Words only begin to capture it. MS, the gift that keeps on taking. :(

Hang in there, I am so glad I found your blog. You are doing a great job with it. :)

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