need to moan

A forum to talk about the general challenges of daily life with MS.

need to moan

Postby westwood » Thu Apr 09, 2009 8:24 am

Daily life- I had a bad relapse a fortnight ago and the MS now is a real struggle. Before this I had a pronounced limp but in the scheme of things, it could have been a lot worse.

If only I could believe there will be a cure. I am a single parent, two fab kids and numerous pets. Everything I lived and breathed, how my previous life was ,has gone. On the drop of a hat would shoot out the house to rescue a dog, the phone never stopped and life was exciting. I have a nice home and a nice job, though again if I was well the job prospects would be great.
In reality I dont 'pop' anywhere now and spend the most part of the day in an armchair. I hate people at work asking me if I had a nice weekend. If only they knew that it took me an hour to get up and downstairs, and then I was so done in I watched telly until time for bed. I struggle to cook a meal and I miss my old life. It is five years since I was DX and I still cannot accept it. To everybody else I am always happy but I dont have anyone to talk to really- hence off loading here.
I worry getting out of bed, the moment that my feet touch the floor I know how the day will be - a struggle. Sorry to sound negative but I am fed up of pretending to be upbeat, the truth is I am devastated that this has happened. Fancy getting an illnes where there is no cure. Daily life is a struggle for me mentally- I spend all day in a world where I dont have this illness, staring out of the window imagining what I would be really doing if my legs worked. Oh well, deep sigh, we can dream cant we.
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Postby Loobie » Thu Apr 09, 2009 10:26 am

Dude,

I hate it like that too. I really do think I have accepted it, but that doesn't mean that I have to like it; I hate it. It takes away so much and that sucks. Me and Mark (skydog) were talking a bit about how the average 'target' of MS seems to be active, or in our case hyper active :lol: people. Maybe it's because we end up nutrition depleted or something. I don't know, but I thought I'd give you some solidarity here. I, too, sometimes just hate planting the feet on the ground out of bed for the first time upon waking. My thought is always 'the first step is the first step to wearing my legs out wwaaaaay before the end of the day'. Hell, usually before noon. At any rate, I use this board to vent all the time. I can't give you any useful advice about making it better, but just know that you have many brothers and sisters who feel it too. This may sound corny, but one of my defenses has been to post in the attitude of gratitude thread. I started it when I was having a very difficult time feeling like I was ever going to give a real smile again. I don't know why, but just the exercise of scouring my brain for something I can latch onto that day that MS hasn't buggered (I'm not english, but the US term for that is not very PC :D). I just think of the things that still are capable of making me happy and then write them down. It's not a panacea for the blues but, for me anyway, it helps me to look at something other than life through the shit prism.
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Postby westwood » Thu Apr 09, 2009 1:37 pm

Thanks for the reply-I know every single one of us must feel the same way. I know what you mean about being hyperactive- when I got it people were shocked,saying that they just could not believe that I had got it!
I worked doing mortgages, and also as a carer for people for people with Head Injury. I lived to work, I just loved it. I had horses, broke them in and fostered dogs. My new daily regime is one so alien to me I could just scream.
I never watched TV before I had no time. Now it is on 24/7 as I try and kid myself that I actually enjoy it. I know it could be worse and I dont moan. Where I work my boss said people dont understand as they either see people with MS who are mild or the very bad sufferers are at home and rarely dont go out. And then somewhere in the middle is me, going to work, swinging off the walls as I go to get there.
I can hardly remember being normal, even though for 35 years I was.
I know it cant be put right and thats the heartbreaking truth.Think I feel down as its the Bank Holiday break and guess what I will be doing. Not a ot as per is the norm. If only- the possibilities pre ms would have been endless.
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Re: need to moan

Postby NHE » Thu Apr 09, 2009 2:40 pm

westwood wrote:My new daily regime is one so alien to me I could just scream. I never watched TV before I had no time. Now it is on 24/7 as I try and kid myself that I actually enjoy it.

Yes, most commercial TV is garbage and will rot your mind (think negative neuroplasticity). However, I do enjoy the science and nature shows on PBS. You could always read books instead! I regularly get a few books from my local library. Have a look through the Reading Nook forum for some book suggestions. For starters, a good book discussing neuroplasticity is "The Brain that Changes Itself" by Norman Doidge. :wink:

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Postby Loobie » Thu Apr 09, 2009 2:43 pm

Good advice NHE. I've have torn some good books a new butt hole during this now that I have all the 'free' time.
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Postby Bubba » Fri Apr 10, 2009 7:15 pm

Loobie wrote: I can't give you any useful advice about making it better .


You just did.. By being here, this board, you and Shannon have meant alot to me in my elementary stages... 8O
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Postby Loobie » Sat Apr 11, 2009 3:55 am

Thanks Bro. Let's hope it stays in the early stages!
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Postby skydog » Sat Apr 11, 2009 1:03 pm

Keep on Keeping on... I really think that our collective encouragement and positive attitudes are the best med going. I know everyday will be ok as long as I keep positive. Just have to laugh off our daily struggles. Went razor clamming yesterday something I used to be really good at. For those who don't know razor clams they are fast diggers. Not like the bay clams that give you the whole tide to dig if you need it. So long story short is I suck !! at razor clamming now. My first clam of the tide almost got away. Picture this I had a hold of him, But was literally up to my armpit in the wet sand. I slowly was able to pull him to the surface. Now lying in wet sand totally wore out a nearby clamer asked if i would like to try his clam gun. Well let me tell ya in my early days I would have been insulted. I considered the clam gun a tool for old ladies and wimps. I gladly accepted and managed to get my limit. Took a good half hour to get off the beach and to my truck. The end justifies the means. Clam fritters for breakfast. Yea life is still good... Peace Mark PS I will now be using my nice old stainless steel clam shovel in the garden. Going shopping for the clam gun...
Plant a BIG Garden Live in the Moment
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Postby Loobie » Sun Apr 12, 2009 6:03 am

Similar situation for me yesterday. I spent all day driving my new camper back home. I have had a progression like that also. First, rugged campers. Tents and cook over the fire. Those guys in the campers are wuss boys. An air conditioner....are you kidding me? Second, Ok we'll get a pop up camper just to get us off the ground. But it's still camping, just off the ground.... a cot on wheels if you will....but no Air Conditioning damnit! Third. Ok, we'll get an air conditioner for the pop up. But that's it! Fourth. New travel trailer with AC, shower, stove, CD player. My youthful self would be dissappointed, but he's gone now, and I need to be able to enjoy myself instead of having camping be nothing but a non-stop activity fest. I just can't do it anymore, but that's ok. I can still enjoy the fire and being outdoors. I just don't have the wear with all to rough it!
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Postby catfreak » Sun Apr 12, 2009 7:11 pm

Westwood,

A career for people with head injuries. That is the best description for the Mortgage industry I have ever heard in my life. :lol: :lol: You have to be a hyper person to do what we do for a living. It is such a stressful job.

I have worked in the banking industry all my life. The last 14 years on the mortgage side, nine of those as an underwriter. Now doing mortgage fraud investigations and working from home. Thank goodness I get to work from home or I may not be working at all.

I listen to a lot of music while I work, and have started a small raised bed garden. We built benches on each end so I can sit down while I work. Maybe I can get it to live. :roll:

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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