I try hard to find the humor in having MS, but honestly…NOT funny! For me, the only way to cope is to find the humor. It’s getting harder daily.
To be ‘upbeat’ about it, I do have blessings in my life. I have a hubby who stands by me, 3 fabulous teenagers [yes fabulous and teenagers in the same breath], a roof over my head, food, and the list goes on. Roger [hubby] has spoiled me: mini fridge in my room, microwave, 40″ flat screen, hospital table, MAC, iPad, iPhone, etc. My parents purchased me an awesome king size adjustable bed. So on the outside it may seem ‘all good’. Yes, what a life. I can spend my time cozy in my bed, watching my Crossing Jordan on Netflix, dozing, cuddling up with my 3 dogs, play on my MAC. Joyous, right!
But on the inside emptiness prevails. I’m alone most of the day, no way to just get up and go, have a life…a quality life. I can no longer make my jewelry as my hands drop things all the time. The stress and sadness that causes is unbearable. Yet another thing my MS has taken away from me. Sometimes I think I must have been a real bitch in a previous life! Most people would laugh and say, “In a previous life?!!” 😛
So how do I cope? Never said I do, I just keep on breathing. I’ll never cope too much has been taken from me. Being primary progressive is a slow drawn out death. When dx’ed in 1997 [finally] I have gone from a cane, AFO’s, walker, manual wc, to a power wc. The fatigue is paralyzing. And fatigue and being tired are two separate issues. Being tired, I can sleep. Being fatigued, I just lie there, empty and alone.
I’m feeling all of this right now as new issues happening yet again. I’ve tried many different meds. All of which did not help or caused other problems. Now, the Tysabri, may have to be stopped due to a rise in my liver counts. We will find out next month. Two blood test have shown a rise, if the third does, yet again, another med bites the dust. After awhile you feel like ‘why the fuck should I keep trying!’ With every new issue it feels like another part of you has died. The mourning period starts.
I know, I know, “Poor me, pour me a drink!” I wish a pity party was that simple. And trust me, the last I want or need is anyones pity!! That just pisses me off. This blogging thing is to help me get it out and down in to words. Trust me, I know I’m no writer, but it’s my blog and I can blog if I want to! HA!!! I’ve not been blogging much as my hands will not cooperate. I have Dragon Naturally speaking and am trying to figure it out. lol My problem is it won’t allow the work fuck!! You know that doesn’t work for me! 😉 Figured I’d blog to let my readers know I’m still alive and hmmm not kicking… you get the idea.
One last lil’ diddy… ‘Be kind, for everyone you meet is fighting a hard battle.’
Off to watch more Crossing Jordan! [love me some Nigel]
Peace out peeps and peepettes!
Making it Through the Rain 
honey – life is a bitch and in a previous life you were probably just as nuts and just as funny.
I often think life is sofa king unfair on the great people who bless your life , the fabulous people who come into your life and they are in pain – I can relate to the loneliness – on my year “off” I was alone while Alice was at school and okay had books, the dogs and my drinks (pre-internet) but everyone is at work so not like you can call your mates for a chat at 11am because your bored or day time TV is crap ….. Everyday I am up and about I am eternally grateful ……..
I hope the infusions kick in and the third test is okay and yes part of you does die when that one doesn’t work …….
rant away sunshine and remember this you make me and a whole load more people laugh everyday you are sofa king funny …….
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Thanks for that Vicki!!
xx
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I don’t think there is anything I can say or do that would take away the pain or make you feel better. So I’m going to give one of my special hugz. ((((HUGZ)))) to my friend Tracy.
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Your hugz are always welcome Frannie!!
xoxo
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If you lived closer, (Even the same country would do lol). I’d ask if you wanted to have a ‘TV feet up’, with company and munchies x as life for me isn’t a lot different.. And don’t worry about expressing yourself… having material things is nice, having family is precious and important… but a good gripe makes room for the humour x ((huggles to ya))
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Well move!! lol I love having giggles with girlfriends!! We’d have a blast!!
xoxo
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If there’s ever a kind. rich, generous, person lol… (Oh and he can do your pool lift whilst he’s at it lol).
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pool lift!! Yes…I’m waiting!!! lolol
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I loves ya, kid!..and I mean kid as I am an old fart compared to you, but each day I wake up and tell myself, c’mon old lady you can do it.
I’ll share a laugh with you any time you want!!
Always here for you shweetheart!!
xoxo
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haha you not old woman!!
TY for your constant support!!
xoxo
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I have been too out of touch with you and all my other wonderful friends, we need to fix that. Love you for how real you are and I know the need to vent so vent away…or bitch away♥
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mt too Rubes. Out of touch with life really!
miss you
xoxo
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Hey, any time you want to throw a pity party, I will be there with my hat on, blowing a whistle for you.
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cool beans, I’ll keep ya posted! 😉
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