Hi all - first time on this site. Been awhile since I sought out other MS'ers. But the 'chit' has hit the fan and I'm desperate.
Was dx'd in July 03 - after several, random, 'unexplained' and un or mis-diagnosed episodes happened over the span of many years beginning in '94 when I was 23. After a nasty episode left perm nerve damage in my left arm & leg and a year later had optic neuritis leave missing vision in my right eye and for some strange reason began feeling worse and worse as the days passed after starting a light workout at Curves, plus the weird and unpleasant things happening to my body - I thought 'hmm...something's really wrong here. And aren't you suppose to feel BETTER as you continue to work out, not worse?' I was living in bizarro world. Still am. You give me the normal response to something - my body gives you the opposite! It was then that I finally decided to make the dr's do their job and give me some real answers and I would NOT feel guilty, stupid or that I was hypochondriac for insisting they figure out what the heck was going on and causing it all.
When I was dx'd my first reaction was one of relief - I was not, in fact, crazy!! (well not for THIS reason, anyway) There really WAS something going on all this time!! That quickly faded to absolute fear and depression. Though I didn't really know what MS was until I got home and looked it up - then I really freaked out and my depression really sunk in. I didn't want to tell anyone at first - I was scared. I was now 'diseased', 'broken' and according to my doctor - was going to end up in a wheelchair! But hey, the 'good' news was I didn't have to worry about that for another 20-30 years! I've been living with the image of myself in a wheelchair ever since. One that I finally pushed out of my head for good just this year, actually.
Even though things have gotten really bad. I've steadily declined since that day. Though it took awhile. I tried the shots for 6 months and felt like I was dying 6 out of 7 days of the week. I stopped and decided I wanted to live my life as fully as possible instead of just existing in hopes it would slow the progression down while I became a sick zombie. "It's better to burn out then fade away" - Def Leppard. Yes, I'm a reformed 80's rocker chick. Ok, no 'reformed' but...
Anyway - it wasn't until sometime in 08 that I hit my first real bad rough patch. I had to go out on disability for a few weeks. Then I was good until mid 09 - this time it was worse and I was out several weeks. And when I went back - I never quite returned to a 'good' status. I was mostly just hanging on trying not to get fired. And now I'm out again. After spending over a month so sick I could barely manage to work and take care of myself. Everyday it was a choice - try to get some work done (I work from home and have a highly flexible schedule - so it's really bad when I can't even make THAT work) or brush my teeth and wash my face. Forget taking a bath or shower and getting out of my pj's wasn't even an option. But I was so scared to go on disability again that I kept trying to work, hoping that 'tomorrow I"ll feel better'. I said that for four weeks straight until finally I went off. I was barely making it from the bed to the chair in the living room and back to the bed. sleeping and laying down for days in a row and feeling just as bad. Sometimes I felt so sick I felt like I was literally dying. I knew I wasn't - well, was 75% sure I wasn't. I've had rough times before and usually just hunker down and get through them. But after weeks upon weeks without many breaks - it really started to get to me.
I have a young daughter and am single parent -with a live in love who is really helpful, especially when my world stops and I can't do anything. He takes over and helps as much as he can.
Anyway - it's gotten so bad that I really think there's more than just MS going on. I have doctor's appts scheduled to see what's going on. My MS has been really debilitating at times but usually the really bad times are for short periods - a couple days or so. Then I get a reprieve. My 'good' days would still equate to a normal, healthy persons nightmare. But I've adapted fairly well to dealing with it all and still managing. As long as I have my pain pills, a freezing cold house and lots of rest.
Before my first time out on STD in 07 - the MS was frustrating and depressing. There were so many limits in my life and I missed them. I missed dancing, skiing, bike riding...going outside in the summer! I keep vampire hours now a days.
I try to make light of things, laugh as much as possible and not take things to seriously. I can't fix it but I can make the best of what I have to work with. I have a dark sense of humor and sarcasm is a must for me. Doesn't work for everyone, I know. Anyway - things were hard compared to my healthier days...but I could still live a fairly good, productive life. Then I hit these periods of being knocked on the floor. It's not the nerve pain or muscle weakness that stops me. It's incredible fatigue, body weakness (like someone pulled the plug and no energy is there), migraines, dizziness, nausea, hot/cold sweats, feeling like I'm going to puke, fall down and/or pass out when I'd be up and around or even just sitting upright. feeling out of breath even at rest and just an all over feeling of 'sickness'. So bad I could barely get myself up to the bathroom to use it, couldn't get myself to the kitchen to eat - so being at home alone most of the day would just not eat!!
Anyway - my neuro told me earlier this year that some of what I'm going through doesn't fit MS - it sounds metobolic . I looked up other autoimmune diseases and much of what I go through is text book MS. But some of it sounds like it could be Thyroid based. One 'holistic' doctor said I had signs of Adrenal Gland problems. So I'm going to push them to do some specific tests.
Tonight - right now as I've been writing this - is one of the better moments I've had. Over the weeks I've had some reprieves...but they last for short periods of time. Then I slump down again and things just go to pieces.
My life is so screwed up right now and feeling so out of control, helpless - unable to even do the basic things for myself day to day regularly - is getting to be unbearable. It's like my entire life just stops because I can't DO anything about it. I'm too busy trying to get myself up and across the room! It's a miserable way to 'exist' because it sure as heck isn't living. I've lost myself. Me as a sick person is not really me. And I miss me. I miss being able to enjoy life, enjoy my daughter, my boyfriend, my family, my friends, working, life in general. I see 80 year olds out there spinning circles around me, living life and I feel envious! I'm too young to be this sick. I feel so absolutely trapped in this body that doesn't work!!!
What's even more frustrating is - it does work. I'm still fairly strong and capable - when all of this crap isn't happening. But when it is - it's like everything just shuts down and my entire body goes haywire, nothing works right, my temperature is going from one extreme to the next within minutes, I feel like I'm literally dying it feels so awful. I feel like I have a rock in my stomach constantly. There are so many things going wrong it's quicker to list what's not. It's so complicated and there's so many things happening at once that's it's overwhelming and hard to even describe most of the time. I try to remember things I felt before MS hit - to try and come up with things that other people might kind of understand or relate it to. But before I started experiencing these things - I'd never felt anything like it before. It's 'different' than normal things. I couldn't have imagined what this is like before I actually went through it myself. So I know it's going to be hard for others to understand.
I wouldn't wish this on my worst enemy!! Well - maybe my absolute worst!!
Anyway - I know I've rambled on and on. I don't even know if I made sense. Thinking clearly and processing things has really become an issue. Right now - it seems fairly decent but that's to me. I have no idea if I really AM making sense or just babbling.
It's hard because though I think about it all the time - as I'm living with it all the time. I don't TALK about it very much with people. So when I do finally start sharing - so much is pent up!!! It spills out and half the time in no particular order and there's too much to remember even. But then I think - who wants to hear about all this anyway???
Well - I don't know if this was really the best introduction for my first post here. I'll try to do better and be much shorter here on out!! But it does feel good to get this out of my head sometimes. So thanks for 'listening'. =)
And does anyone else go through feeling really 'sick' like this? Is this possibly all just the MS complications??
Was dx'd in July 03 - after several, random, 'unexplained' and un or mis-diagnosed episodes happened over the span of many years beginning in '94 when I was 23. After a nasty episode left perm nerve damage in my left arm & leg and a year later had optic neuritis leave missing vision in my right eye and for some strange reason began feeling worse and worse as the days passed after starting a light workout at Curves, plus the weird and unpleasant things happening to my body - I thought 'hmm...something's really wrong here. And aren't you suppose to feel BETTER as you continue to work out, not worse?' I was living in bizarro world. Still am. You give me the normal response to something - my body gives you the opposite! It was then that I finally decided to make the dr's do their job and give me some real answers and I would NOT feel guilty, stupid or that I was hypochondriac for insisting they figure out what the heck was going on and causing it all.
When I was dx'd my first reaction was one of relief - I was not, in fact, crazy!! (well not for THIS reason, anyway) There really WAS something going on all this time!! That quickly faded to absolute fear and depression. Though I didn't really know what MS was until I got home and looked it up - then I really freaked out and my depression really sunk in. I didn't want to tell anyone at first - I was scared. I was now 'diseased', 'broken' and according to my doctor - was going to end up in a wheelchair! But hey, the 'good' news was I didn't have to worry about that for another 20-30 years! I've been living with the image of myself in a wheelchair ever since. One that I finally pushed out of my head for good just this year, actually.
Even though things have gotten really bad. I've steadily declined since that day. Though it took awhile. I tried the shots for 6 months and felt like I was dying 6 out of 7 days of the week. I stopped and decided I wanted to live my life as fully as possible instead of just existing in hopes it would slow the progression down while I became a sick zombie. "It's better to burn out then fade away" - Def Leppard. Yes, I'm a reformed 80's rocker chick. Ok, no 'reformed' but...
Anyway - it wasn't until sometime in 08 that I hit my first real bad rough patch. I had to go out on disability for a few weeks. Then I was good until mid 09 - this time it was worse and I was out several weeks. And when I went back - I never quite returned to a 'good' status. I was mostly just hanging on trying not to get fired. And now I'm out again. After spending over a month so sick I could barely manage to work and take care of myself. Everyday it was a choice - try to get some work done (I work from home and have a highly flexible schedule - so it's really bad when I can't even make THAT work) or brush my teeth and wash my face. Forget taking a bath or shower and getting out of my pj's wasn't even an option. But I was so scared to go on disability again that I kept trying to work, hoping that 'tomorrow I"ll feel better'. I said that for four weeks straight until finally I went off. I was barely making it from the bed to the chair in the living room and back to the bed. sleeping and laying down for days in a row and feeling just as bad. Sometimes I felt so sick I felt like I was literally dying. I knew I wasn't - well, was 75% sure I wasn't. I've had rough times before and usually just hunker down and get through them. But after weeks upon weeks without many breaks - it really started to get to me.
I have a young daughter and am single parent -with a live in love who is really helpful, especially when my world stops and I can't do anything. He takes over and helps as much as he can.
Anyway - it's gotten so bad that I really think there's more than just MS going on. I have doctor's appts scheduled to see what's going on. My MS has been really debilitating at times but usually the really bad times are for short periods - a couple days or so. Then I get a reprieve. My 'good' days would still equate to a normal, healthy persons nightmare. But I've adapted fairly well to dealing with it all and still managing. As long as I have my pain pills, a freezing cold house and lots of rest.
Before my first time out on STD in 07 - the MS was frustrating and depressing. There were so many limits in my life and I missed them. I missed dancing, skiing, bike riding...going outside in the summer! I keep vampire hours now a days.
I try to make light of things, laugh as much as possible and not take things to seriously. I can't fix it but I can make the best of what I have to work with. I have a dark sense of humor and sarcasm is a must for me. Doesn't work for everyone, I know. Anyway - things were hard compared to my healthier days...but I could still live a fairly good, productive life. Then I hit these periods of being knocked on the floor. It's not the nerve pain or muscle weakness that stops me. It's incredible fatigue, body weakness (like someone pulled the plug and no energy is there), migraines, dizziness, nausea, hot/cold sweats, feeling like I'm going to puke, fall down and/or pass out when I'd be up and around or even just sitting upright. feeling out of breath even at rest and just an all over feeling of 'sickness'. So bad I could barely get myself up to the bathroom to use it, couldn't get myself to the kitchen to eat - so being at home alone most of the day would just not eat!!
Anyway - my neuro told me earlier this year that some of what I'm going through doesn't fit MS - it sounds metobolic . I looked up other autoimmune diseases and much of what I go through is text book MS. But some of it sounds like it could be Thyroid based. One 'holistic' doctor said I had signs of Adrenal Gland problems. So I'm going to push them to do some specific tests.
Tonight - right now as I've been writing this - is one of the better moments I've had. Over the weeks I've had some reprieves...but they last for short periods of time. Then I slump down again and things just go to pieces.
My life is so screwed up right now and feeling so out of control, helpless - unable to even do the basic things for myself day to day regularly - is getting to be unbearable. It's like my entire life just stops because I can't DO anything about it. I'm too busy trying to get myself up and across the room! It's a miserable way to 'exist' because it sure as heck isn't living. I've lost myself. Me as a sick person is not really me. And I miss me. I miss being able to enjoy life, enjoy my daughter, my boyfriend, my family, my friends, working, life in general. I see 80 year olds out there spinning circles around me, living life and I feel envious! I'm too young to be this sick. I feel so absolutely trapped in this body that doesn't work!!!
What's even more frustrating is - it does work. I'm still fairly strong and capable - when all of this crap isn't happening. But when it is - it's like everything just shuts down and my entire body goes haywire, nothing works right, my temperature is going from one extreme to the next within minutes, I feel like I'm literally dying it feels so awful. I feel like I have a rock in my stomach constantly. There are so many things going wrong it's quicker to list what's not. It's so complicated and there's so many things happening at once that's it's overwhelming and hard to even describe most of the time. I try to remember things I felt before MS hit - to try and come up with things that other people might kind of understand or relate it to. But before I started experiencing these things - I'd never felt anything like it before. It's 'different' than normal things. I couldn't have imagined what this is like before I actually went through it myself. So I know it's going to be hard for others to understand.
I wouldn't wish this on my worst enemy!! Well - maybe my absolute worst!!
Anyway - I know I've rambled on and on. I don't even know if I made sense. Thinking clearly and processing things has really become an issue. Right now - it seems fairly decent but that's to me. I have no idea if I really AM making sense or just babbling.
It's hard because though I think about it all the time - as I'm living with it all the time. I don't TALK about it very much with people. So when I do finally start sharing - so much is pent up!!! It spills out and half the time in no particular order and there's too much to remember even. But then I think - who wants to hear about all this anyway???
Well - I don't know if this was really the best introduction for my first post here. I'll try to do better and be much shorter here on out!! But it does feel good to get this out of my head sometimes. So thanks for 'listening'. =)
And does anyone else go through feeling really 'sick' like this? Is this possibly all just the MS complications??
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