Is it just me?

[lilblackhorse]

So, I am all of technically 4 months into this, but I think it's more like 2 years.....but when I wake up in the morning lately it just seems that every morning I am worse.

Seriously, how fast is this stupid disease supposed to go? Every day I find I am less able to do things. I am still mobile (that being a relative term). I use a walker because my balance and strength are crap. PT has measured me for a power chair. I used to say that was my line in the sand...but I'll do it in my own home.

My left leg is a block of dead wood. Losing dorsiflexion in my right now. Left arm is going downhill every day. I can't brush my hair, hang up clothes, lift anything. I have my right arm, and now the twitching is getting out of hand. I have crazy random movements in my hand, and it's just so disheartening to feel the fasiculations in my good arm, knowing it's a sign that it's going next.

I feel like I have a bomb inside me, and everyday it's just consuming me. I know I'm preaching to the choir, but everything is a struggle. I don't want to do this anymore. next month my son moves out and I'll be alone. I can't help but think that another month I am going to be so much worse, and alone too. How do you all do this day in and day out? I'm fricking exhausted and I do nothing.

thanks for reading my rant....can't decide if it helps or not. I am making plans to fly home somehow to say goodbye to my family. How the hell do you do that?

 

[cheerleader]

Please take your power chair with you on your trip. If you call ahead the airlines will accommodate you with caring. The first time my hubby took his on a trip, he told our friends "the chairs here aren't comfortable,so I brought my own!" Everyone laughed and the embarassment he was so worried about was laid to rest by his humor.
I am so sorry life is becoming more and more difficult. Hope you are lining up some at home help now. Wish I had words of wisdom but....... Instead I'm sending hugs. Donna

 

[scaredwifetx]

You should rant and I hope it helps. My husband is also going downhill everyday and it is hard to watch. He has one leg that is like a block of wood and the other one is not much better. He is also having problems with his hands. I hate this disease because just when I try not think about it for a day something new happens. Don't feel bad about being angry but do try to live the days not count the days. I know it's easier said then done. Also, don't be to proud to ask you family and friends for help. You will be surprised at how they will rally when you need it. We are only a month in so by tomorrow I most likely will be ranting and having another meltdown. We all understand and this forum will make sure you do not feel alone and the wonderful people on here having really goof advice.

 

[Nikki J]

Well yes. This all stinks and as you progress you are going to need more and more help. If your son is leaving you need to make other plans

I hear you on the exhaustion. I have been trying not to whine but I did vent to my friend the other day that everything is just so darn hard! I try to pace myself with lots of rest but some things are getting too much.

I am worried about your fall risk. The chair will be a good thing. Right now do you have a medic alert or are you carrying a phone ALL the time?
Progression is not generally linear. It seems to come in fits and starts for many of us. Hoping you hit a plateau

 

[hjlindley]

Do not fear the power chair. It is freedom. Freedom to browse the grocery store, freedom to see everything at the hardware store, freedom to see the latest museum exhibit. A fall can be devastating. Pace yourself, enjoy what you can, and if anxiety is getting the better of you, get help from your doctor.

 

[affected]

So sorry the progression is so fast. My Chris was rapid progression.

If your son is moving out, you need to get plans in place right now for how you are going to be looked after. We have some PALS here who live alone, I don't know how they do it, but every avenue of help should be explored and now. It's far better than suddenly being in crisis.

Also I totally agree on getting a pwc sorted right now too. Falls are to be avoided at all costs - they can be so serious.