Family · FUCK · Health · Multiple Sclerosis · Quotes · Ramblings · RANDOM · Sarcasm

No more sugar coating it…MS suuuuucks!!

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.

please no more

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!

PAIN · Ramblings

What’s the point?

I was talking to my MS counselor yesterday. I was telling her how I feel nothing. Some days I get up and think, ‘What’s the point?’ I wonder why I even bother getting out of bed. Sometimes I don’t. I really hate this feeling. It’s not about poor me, or feel bad for me, it’s just my state of mind. I’m sure with or without a chronic illness some feel this way. Is it depression? Maybe. Is it the time of the year? Maybe. Is it personal issues? Maybe. Is it all of those rolled up into one? Probably. So how do we get through it?

It is very hard, for me, to ask for help. Help of any kind. I’m the type that wants to fix everything. Help [or try to] everyone. It keeps my mind off of me and my issues. It is much easier listening to other people’s issues than talking about my own. Even when I do find someone who wants to listen. Even then I try to make fun of my MS, my falls, my issues with it. When in all actuality, it’s not funny. But laughing at it is what gets me through the hard times. After my last fall, I have been thinking a lot about safety. I am alone much of the time.  And the fear of falling is what keeps me secure in my room all day. I’m too paranoid to venture to far from the safety of my bed. I do keep the phone with me even when I do the walker trip to the potty. I always laugh and think what good the phone will do me if I am unconscious. 😛

So, I am a hermit in my own home, my bedroom. You can tell where I sit all day on my bed by the ‘dip’ in the mattress. 🙂  It is just ‘safer’ for me right now. So, that is why i wonder, ‘What’s the point?’ Why bother waking up at all to just sit in the same spot all day. I know I could get up, and do something, anything. But, lately it is just easier to sit in my ‘dip’ and medicate!

So, will someone please tell me, what’s the point? P lease none of the, ‘well you’re alive’ or ‘it could be worse’. You see, it IS going to get  worse. Just not sure how quickly it will come…

Blessings and hope!