Does this get any easier?

[Ojibajo]

Can someone please explain this frickin disease to me. I was only diagnosed in February. Yes, I've been frustrated but I've tried to be positive and roll with the punches and just except things and they come but I am feeling overwhelmed and beyond frustrated and confused and slightly angry. But for the most part I was thinking I still had a few years left a semi-normal life left since I don't have A LOT of symptoms.

I'm not on DMDs yet. I might start them this week. I don't know.  I did start Provigil which is SUPPOSED to help with fatigue. I haven't noticed that it has given me energy. I have noticed that it has given me cotton mouth!

I have been in this STUPID flare which I thought that I was coming out of. I felt GREAT yesterday I went to PT went to a friends house, picked they hubby up at work, felt a little tired when I got home and decided not to push it anymore. This morning I woke up horrible exhausted. I still got up and took my husband to work. (One car isn't running right now.) When I came home I just went right back to bed. My son was pretty much unsupervised all day. I didn't get anything done that I planned to do. I feel like such a frickin' slacker/looser! I did pick my husband up from work and guess what I did when we got home. Yep! I fell asleep!

So did I feel so good yesterday that I just over did it? Am I just not out if this flare? Is this how I am always going to be? Do I need a higher dose of Provigil? Someone, please tell me this is going to get easier.

I'm sorry to through myself such a pity party since I know that so many have it SO MUCH WORSE that I do, but a month ago my ONLY symptom was fatigue, and I was taking a dance class and I wasn't this bad!

This HAS to get better. I have a job that I have to do and a son to take care of.  I can't do that if I am sick and exhausted all of the time.

[HVAC]

No this disease is no fun. Not having a support system makes it worse. Plus energy is like money in the bank, with no credit, when it is gone it is gone. Having a child makes it harder because you need all your energy for your child. Some how you have to figure out how to spend the energy in a day.

Alex

[Lulu54]

It sure sounds like you are in a bad place right now, on several levels.  It won't help you, but I want to be sure you know you are not alone - fatigue is the #1 complaint of MS patients, so you have lots of company.

This is such a MySterious disease, it is unpredictable what each new day will bring.  The physical and emotional toll being in that unknown state can really drag us down, too.

Do you have any support system outside of your husband that you can cultivate to help with your son?  Some type of mothers day out program that would give him the chance to interact with other children and give you a few hours break might be good for all of you.  

You felt so good that one day, and you may have done what so many do - tackle the world when you really are not ready.  I think energy conservation, especially on those good days, is important to help balance us.  The next day you feel good, try to pace yourself and don't over do it.   I know, that's easier said than done.

If you feel yourself slipping further, be sure to talk to your doctor.  Depression can be the companion to all this and can be treated.  

Remember that starting a DMD doesn't change your situation immediately.  It takes time for your body to respond to the drugs and turn the autoimmune system into our friend instead of our enemy.

I hope today is better for you,
Lulu

[Ojibajo]

Thanks for the feedback. Yes, I have a husband, but sadly he is more like a piece of furniture. He does not help AT ALL. The only reason I haven't filed for divorce is because I I haven't come up with the money yet. I do all parenting, etc on my own and as you can see, dropping him off picking him up, etc I have to take care of him to and it is getting old and tiring. He needs to grow up. I don't have the money or the energy to take care of this grown man. I have a son to support. He needs to grow up.

[JemmAus]

Actually i forgot to add.....when my flare last year was SLOWLY subsiding in January this year, I found I would ahve a good day then a bad day, then good, then bad......one day off, one day on. Then one week it was two days good, a bad day, then 3 days good, a bad day......I don't know if that is 'normal' for MS or not, but it was so nice to have mor ethan one good day in a row.

I must say at the beginning of 'good day, bad day",, i would get quite depressed at the end of 'good day' knowing that the next day was due to be "bad day". The first ime I had two good days in a row in was shocked!


You have to learn to pace yourself on good days and not overdo it I suppose..


I am currently waiting for the good days to start again. Waiting. Waiting. Waiting.

[JemmAus]

Umm.......I'm was diagnosed about 8 months ago and know what you mean. I also have had "good" days where you get heaps done and feel ok, then the next day, crappola.

For me it hasn't got any easier, though I did have a period over summer of about 5 weeks when i felt pretty 'normal' and was walking without my walking stick. It all fell apart again in February with the death of my friend's child.

So I'm still in a relapse / flare / whatever you call it since then. I can't walk properly thanks to balance issues and my legs are getting weaker 9though I don't kow if that is because of lack of exercise from the balance issues or a different symptom altoether)
From what I've learnt, a relapse can take more than 6 months to get over - I know I felt like $h!t for 8 months last year in total.

Easier? Not sure at this point. More a case of adjusting to the 'new ' you and accepting your limitations..

Yes it s u c k s. One good thing is you have a husband to (hopefully) help. Some of us are doing it alone, or as single mums......

Hopefully your relapses will lesson if you start DMDs. I at this point am not on any....

Good luck! And vent away in here whenever you need - we all do