Just babbling :)

[jena1225]

I am sitting here after a hellish day of pain (ms & spinal), intensive tingling, tremors and weakness. It has been getting worse in last weeks. So, I get up and start cleaning to see if that helps. I think it helped take my mind off the tingling, DID NOT help my lumbar spine, but I kept going. So, when I am done, of course I am exhausted, in more pain, and tremoring.

First of all, it did feel good to DO something productive, no matter how small, but it made my body feel worse. So, which is better? B/c when I make myself worse by being productive, the more my family has to jump in.

Mom picked up both kids and keeping until 7 for me b/c she knows I am having a bad day. These bad days are becoming more and more. I just feel bad not managing my own life. You don't have to comment on that - guilt is one of the hardest things for me to get rid of!

I am looking for a new Neuro, as I really do not think he is managing my pain very well. I am also looking for a PM.

I really am trying to take ahold of this and manage my life. You all know how hard it is when your body feels like cr&p. Like, how can I get anything done? I don't. :rolleyes:

I have made arrangements for getting kids to school in the morning. I have decided that I AM going to try to make my life easier, going to talk to a counselor, find a PM, a better Nuero, etc...

Problem is actually DOING all of it when my body won't let me.

Well, my intentions are good, no?

[0357]

When my MS was active I tried to concentrate on what I could do and say thanks for the help when needed. It isn't easy not to feel guilty but you should try to put that in better perspective; you have MS and it has its ups and downs. Remember MS is unpredictable and some days that works to our advantage.

Hang in there and take care.

[lady_express_44]

Jena, there have been weeks, even months, where I've done basically NOTHING. Sometimes it takes me three days to talk myself into going to the store for groceries or two months to pay my bills. My kids have had to know how to warm up food from the freezer since they were 7 yrs old.

Then there are times, like recently, where I am out digging holes or moving furniture, or whatever. I might be able to a fair a bit for a few weeks, in fact . . . so I do it when I can. Then I crash again for days or weeks or months. And so on, and so on . . .

Listen to your body; it'll talk to you. The worst part is the guilt (for some of us).

Cherie

[Jan J]

I don't think you should feel bad that you need help occasionally. Your mom is willing to take the kids, and apparently someone is willing to help with getting them off to school----all things no one has EVER offered to help me with. You apparently have a pretty good support network, which many of us out there in "MS Land" do not have. Consider yourself lucky. :)

[jena1225]

Thanks for the replies all :)

Cherie - I am glad you said that, it just makes me feel a bit better about accepting the "ups and downs". Whenever the "downs" get me, I always think I am "decling", yet in the past, I have been able to get back up again. Like this last relapse, there were a couple of months there where I was just a goin'! Then bam :eek: No relapse, just a lot of sx's. I know that how we think makes a big difference, so, I will try to get the mindset that this is just temporary :) Oh, and I did get my daughter to make her own frozen dinners, :D (she's 7), but my 4 yr old son is a HANDFULL!

0307 - You make a great point, thanks :)

Jan - I am sorry you have no support :( That does make me feel bad for even feeling guily. Sorry :o I hope you are ok

[lady_express_44]

Jena, when I first started experiencing all the ups and downs of RRMS in a big way, I wrote this up . . .

The Process:

1. We have new symptoms, or worsening of old symptoms, that last beyond 48 hours. This phase of an attack/relapse/exacerbation, lasts usually anywhere from 1 to 6 weeks.

2. We then go into an attack 'recovery' phase, whereby our symptoms start to subside. Recovery lasts anywhere from 1 day - 2 yrs.

3. After full recovery, we may be left with some lingering/ongoing 'permanent' symptoms, or we may FULLY recover. Sometimes though, we have a new "normal" after an attack. Only time will tell if that is the case.

4. We will likely have another attack (and go through points 1 - 3 again).

**We also have flare-ups/fluctuations that will last for 1 - 48 hours, and occur usually as a result of stress, fatigue, heat, etc.

**We NEED to learn to listen to our bodies and avoid the triggers that set off the symptoms. Most IMPORTANTLY, avoid infections/a rise in body temperature; treat immediately.

**When symptoms occur for longer than 48 hours, we should first be checked be for a UTI/bladder infection. Bladder infections can be very dangerous for us.

**An attack is not recognized as a new attack, unless there has be a 30 day break since the last attack.

It's simple, and of course not absolute, but it helped me to recognize an attack vs. a flare, etc.

If you experienced "new or worsening of symptoms, which lasted for longer then 48 hrs", then it is most likely you were actually having an attack. If it was a flare, stopping the trigger (ie. over-extending yourself) would have stopped the new sx within a day or so.

Does this make sense to you?

The hardest part for me is motivation, not necessarily ability. Actually, there's a fine line between those two for me. :rolleyes: Sometimes I KNOW I can achieve something if I really push myself, but I just don't want to. It may be something relatively easy . . . but I still don't want to.

For years, I beat myself up about that, but eventually I realized the world keeps revolving even if don't do anything. :D

Cherie

[jena1225]

Geez Cherie, we could not be more alike, I tell you.

Yes, it does make sense, thank you. And that last part is very much like how I think/feel.

It has been hard for me to distinguish between:

side effects from meds/motivation/mild depression/clinical depression/symptoms, etc..

I am taking advantage of this wonderful program my Insurance company started for people with chronic illnesses. They have certified nurses specialized in MS. What they don't know, they will find out, and are available 24/7. I talked for quite some time with my "personal nurse" yesterday and she helped me so much in trying to figure these things out.

I also made an appt with my PCP for today, and I have some great referrals for some Nueros. So, I am getting there :D

Thanks Cherie!

[lady_express_44]

I suffer from PMS, whereby I get depressed for 3 - 5 days a month. It's full-fledged (temporary) depression. I only figured this out by putting my moods on the calendar (thanks to an astute doctor about 30 yrs ago). I'm not "depressed" otherwise.

I have sad days sometimes too. No rhyme or reason . . . just feeling blue and/or lazy.

Sometimes I am irritable and angry. What I've figured out is that it is because I am over-stimulated (too much noise, interaction, stimuli) or I am exhausted. Now I sleep when this happens, for at least 1 - 3 hrs. I wake up a new person. :)

Much of what I experience emotionally is related, directly or indirectly, to MS. Guilt, feeling sorry for myself, "too much" of something, "too little" of other things ... Life is just not what I expected. I was supposed to be the CEO of IBM by 35 yrs old. :D

The only difference between you and I is that I have mostly come to terms with all of this (at least for now, as it stands :rolleyes: ). You will too because you have the passion and determination to do that.

Knowledge is power with this disease, IMHO.

Cherie