Never felt so bad in my life

[tyler911]

Hi All

Please excuse the moans and groans today, but i have never felt so ill in my life as i have all day

All started this morning, I got up out of bed, walked to the bathroom where i promptly thought i was gonna pass out,
face started tingling, the blackness coming over me slowly, so got back in bed, and thought i was gonna die, i kept going all cold, but no fever, then the electric shocks started in my poor old brain box,

Stayed in bed for a couple of hours, then tried to get up again, no feeling of passing out this time, but the longer i was up, the drunk walking started to rear its ugly head, till i got to the point where i had to go lay down again, I am not actually dizzy, just a feeling that my body wants to dance around, Whats with that ?

I have only just done 5 days of Solu-Medrol, so I should be feeling better, and i am still tapering down, so why do i feel so darned lousy, my left eye still seeing out of it like i have a bit of fine gauze over it right in the center,

My left leg is getting better very slowly, they fitted a splint this afternoon, though I was too drunk (LOL) to really appreciate what it was supposed to do,

Anyway sorry about the moans, I guess i just really need to vent a little, I am not sure if i am angry at this disease, or just getting angry with my self
MS *****, I thought i was gonna be feeling better, with all the medications i am now on, guess i was wrong,
Thanks for Listening

Tyler

[tyler911]

Hi Again

You know that's just what I needed to hear, as I think people are making me a different person, by the way they are treating me, and i hate it,

the problem is, i never know when enough is enough, i think well yeah I am really tired, but if i just do this, it will be done, why wait if i can do it now,

I always thought of myself as a very strong person, and i could take on the world, nothing gets to me so to speak, and of late, i just cannot get to grips with who I am anymore,

Does everyone with MS get like this,

When i was diagnosed back in December last year, my attitude after the initial shock was, oh well, so what just something i have to deal with, and i decided, i was going to live my life the way I always had, but seems like it is going to heck in a hand basket

Well Supermum I am gonna take some of your advice, and write my future, all to my advantage (he he)

Perhaps if the boss wants to pay me for the cut hours (ha ha) i will take all the time off I need, (you think he would go for that one lol)

Well I am gonna go try some more acid reflux stuff, that's why i am still up, the heartburn is out of this world, and perhaps get at least a couple hours sleep in before i go to work this morning

Thanks again

Tyler

[supermum_ms]

Absolutely no way!! Do not ever give in and change who you are because of MS or anything or anyone. You will always and i do mean always be as good as you are, that part of who you are does not need to be adjusted, its just when the flare hits you need to be a selfish cow and do whats in your best interest, and that is not proving to your self or others that your FINE, when your clearly not FINE!

MS doesnt define you, who you are will always be that strong willed fighter, that is if you let your self be............... your future is yours to write, whats it going to be, babe!!

Cheers......JJ

[tyler911]

Hi

Thanks for the answer Supermum, I guess when i sat back and read what I had written, i kinda did sound like a spoiled child there for a minute,

Yes I do have a wonderful boss, and the whole company has stood behind me, so I do not know why i am getting so out of sorts over my hours being cut, it is not going to be forever

I guess I have always been independent, never been ill, and now have this miserable MS,  the flare up that I am still in, I really never expected to happen, in fact I had no idea it could happen, has knocked me for a loop, I could not believe that something like this could happen so fast, So I guess yes i am angry at myself, what did i do to make this happen, could i have stopped it, yada yada,

My boss came round this evening, and again said, they only wanted me well, and i told him that i felt that everyone was against me, and treating me differently, and i
just want to be treated like i always was,  and that i could still do my work,

I guess this flare is a reality check for me now, I am never going to be the old me again, there have to be changes, and adjustments to my life,

Like you I have never played well with others, when they try to tell me what to do, I fight it and do the complete opposite lol,

I though I had accepted that I have MS, just get on with life do what I have to do etc,
but obviously people at work are seeing a different me, trying to overdo everything to prove to myself that i am still as good as i always was,

Guess that will have to stop now too lol

Thanks again for the advice

Tyler

[supermum_ms]

Hey Tyler,

Are you being unreasonable? YES and then there's NO. Most people would be giving up there first born to get a boss who actually cares about them, your's is looking out for you and your taking it out on him, though i do get why.

No is for your anger at the limitations and how this is impacting YOU!  I absolutely hate being limited, I refuse to give in and fight it, refusing to accept this is the new me, i am not ready for that, maybe never will be lol! I'm getting told to stop, dont, let me do that, sheesh my mum after seeing the shower chair offered to come over next week to wash me. I was gob smacked, i just need the security when i cant hold myself up, so no i dont need help washing myself but could you run the vac or get the cobwebs cause everytime i try to do those things, i either fall over backwards or face plant the floor lol.

I too hate being told what to do, more so now then when i was a child lol, but if you dont take it easy sometimes, if you dont be kind to your self when you need to, the ride is going to be a lot harder. So take the helping hand, please!! :-)

Cheers......JJ    

[tyler911]

Hi All

I must be really miserable, I went to work today, feeling pretty bad, but i was not going to give in to this dumb MS,

Well of course i am still having trouble with the walking, but my job does not require me to walk much, so no biggie, or so i thought, well by 3pm, I was so exhausted, physically, and mentally, i could not think straight,

The boss came in about 4pm, and could see that I was struggling, though there is no way I was going to admit that I was to him, though pretty obvious that i had pretty bad tremors, and i could hardly hold the pen,

I was so damned mad at my boss, when he told me that he was cutting my hours down for the next couple of weeks, as he could see i was not coping, he said he would rather see me well, working full speed, than ending back in hospital again

OK so I know he is only looking out for me, but how dare he tell me, how my body feels, what it is capable of, or what i am capable of, am I being selfish, or am I not seeing something everyone else is, He tells me I am not seeing that I am not that well right now, and i need to start understanding that people care about me, and then he out right told me, I have to accept this MS diagnosis, and get out of the denial stage
Damn Man I know I have MS, i am on a DMD I am doing everything that is asked of me by the docs,

Why I am feeling so damned crummy over all this, feels like there is a stupid conspiracy against me, and that everyone knows best whats good for me, other than me,

Please tell me I am not being unreasonable, or am I ?? I am so confused right now, I really do not know anymore,

thanks

Tyler

[slightlybroken]

Vent all you want. I do hope you feel better :)

You should call the doctor if this keeps up. Hang in there!!

Take Care

[mistylee]

Hi Tyler,
I've been feeling really bad this week too and been having a pity party.

It does stink!!  Get angry all you want. I'm sending you some cyber hugs and wishing you to get better soon.  

Mistylee

[DawnYM]

I sorry honey!!! Did you call your doctor. Maybe your having some kind of reaction,.. I'm no help, I'm not familiar with the different prescriptions...
You can moan all you want!!!

Maybe someone else here is still up to write something to help... Hang in there sweety!!!  And being angry is your right!!!

Are you the Tyler who was in the car accident??? If you are the first post I read about you was from your husband, what a sweet guy to let everyone here know what happened to you!!!

I hope you feel better soon!!! Dawn