This Is MS Multiple Sclerosis Community: Knowledge & Support

Cureo:

I am very sensitive to heat. It seemed like a good fit for me but it just made me a little nauseous. The neuro said that the 4-ap helps 1/3 of the people who try it. 1/3 have no effect and the last 1/3 don't tolerate it well. I fell into the last group. They have you try it in three concentrations to make sure you don't get into trouble.

Mick

Cureo,

4AP can be obtained in Australia from compounding chemists, with a script. I tried it about 5 years ago. It is one of the few things to have assisted me. It improves energy and reduces spasticity. However, even in small doses it can create 'dizziness' which puts you out of action for most of the day.

Phil.

I think it is just like a run-down, total exhaustion. You are trying to act normal, but your body cannot accept normal, so you have to rest or veg for several days just to get back to the present state of your current health, which is operating in low gear.

When I push myself to do what I used to do, I pay for it for several days or more. Like now, I am pushing myself big time for Thanksgiving, but I will have to rest for three days before I can go back to work.

My family has a hard time understanding. My husband does, because he sees me everyday and he knows my limitations now. But my sons do not realize how MS has slowed me down.

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Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.

Ewizabeth

It sounds like you know the drill. You have brought up a good point regarding family and fatigue. I know this is very common when a family gets hit with a chronic illness. This ms situation has shifted a huge burden onto my wife. I try to help but then I’m down for days. It’s very hard to find a balance or accept that I simply cannot support the family in any reliable / physical way. I try to compensate by doing as much “brain” work as I can but that doesn’t make the work go away. We just have to adapt and “not do” things that aren’t essential but it’s hard to decide exactly what that is.

I’d like to hear about how others deal with this loss of physical capacity and deciding what has to go. We are trying to decide if we should move out of our house and into a small condo or something? I’m not looking forward to that, yikes!

Sorry for the rambling reply,
Mick

Hi Mick My wife does most everything; I try and do as much as I can for her. We two have thought about the day when a condo makes more sense. The upstairs in our house is hard for me to get too so I mostly stay downstairs, even the carpeting downstairs is hard to walk on because I can’t slide my feet on it. It becomes easy to decide what a necessity is and keeping everything simple is so important. I don’t want to feel my wife is burdened because I just couldn’t handle that. When I think of everything ms has taken sometimes your stubbornness takes over for common sense, there are certain things you have to hold on to or what’s the point. Not sure if that makes any sense but the not sure has become a big part of my life...

Hi Robbie:

It does make sense.

The delima I face is that I know what I'm no longer capable of doing and I have to keep informing my wife and daughter about the progression. It's just that I don't like being the bearer of bad news all the time. I'm hoping this stabalizes at some point. They say you should expect the best and plan for the worst? Does that mean total fatigue? How does one plan for that?

Sorry, kond of a gloomy post. My next one will be upbeat.

Thanks for the reply.

Mick

Hi Mick,

It is hard to find a balance and to accept physical losses when you've previously been very active. I am learning to deal with it gradually. I find that if I rest a lot, then I can do some physical things.

Like today, I cooked a turkey. Yesterday I baked pies. I planned a big dinner. Others brought many other dishes. It wasn't perfect, but we were all together. I used to do a lot more. Now, I'll be sitting in a chair for three days and sleeping later in the morning to compensate. By late afternoon, I was curled up on the couch. And here I sit. There were lots of helpers to set things up and to clean up the mess.

You can learn to do things differently but often it just means accepting or asking for help. That was a biggie for me, but I'm ok with it now.

We have considered moving into a townhome, there are some nice ones nearby. The maintenance is done by a lawn service, so all you have to do is keep up the inside of your own place. But, they are tri-level, not ranch. Maybe someday, but not yet for us.

Happy Thanksgiving everybody!

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Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.

Hi Mick don't worry about sounding gloomy i understand completly. We don't have any kids so i don't know how hard that must be. It is so hard to when u think your suppose to be the strong one and the one that can hold everything togeather but with this this your the one who needs the support and the help. We won't be putting up christmas lights up this year and it's so hard to get out and shop for my wife, it's just little things that are always comming up, they just are always on your mind and it's hard to escape them. Karen is out with friends tonight and i just want her to have some fun and get away from ms because i know most of the time it just as hard for her as me. You can be strong and hopeful whe u need to be but there are just times when u can't and i try to limit those times to when i'm alone and then it dosen't affect anyone else. I am getting good at it to the point where i'm sure friends think that i'm fine and it's no big deal that my life has been torn from me, but thats better for everyone.

Ewizabeth

Thanks for the post, It is a relief to know that this is a common ms struggle. I managed to get some sleep last night so things look brighter today. Actually, the house we live in is a ranch. Everything is on one level (except the laundry). It would probably make sense to stay put for a while. I often wonder how much to reveal to non-family about my ms. It’s tricky. On one hand you don’t want to appear ill and solicit sympathy. On the other hand If everything appears to be fine, asking for help feels a bit awkward. I think you’re right. It’s all about balance.

Robbie:

Thanks for your advice. A lot of the emotional stuff I could very well sort out on my own time. I’m sure this would improve the quality of life of those around me. It’s interesting. You read about all this stuff and you think you know how to handle it, but the reality is you have to learn by doing. I was never real great at learning from books.

Sorry if this reply seems a little wordy but I’m using my computer for dictation and it’s fun to watch it type all all the words for me.
I showed it to my 84 year old father yesterday and he really got a kick out of it.

Thanks very much for both of your posts.
Hope you have some tasty leftovers to work on.

Mick