Can't seem to improve...MS taking its toll!

[kerrtelli]

Hey everyone.  I feel like I am doing the MS DANCE.  One step forward, two steps back!  
I had three good days.  I didn't do anything at all in terms of exertion but they were good days nonetheless.  I thought I was coming out of this thing that I've been in for the last five months but today I took the two steps back.
Woke up at 10:30AM, sleeping over ten hours, got up and was okay at first.  A the day progressed, while i was sitting on the couch doing nothing, I got up and MS returned.  Extremely weak, foggy head, walking unstable, etc.

I have noticed in the last couple of weeks that my arms have weakened.  If I raise them above my head or keep them raised at any angle, i.e. Fold the laundry, brush my hair, etc, my hands start to numb and I can't keep them up.
I feel like i am living in a prison.  I can't go anywhere because it is so hot out.  The second I hit the humidity I feel like I am going to pass out.

The only time i venture outside is to make a bee line for the pool.  This seems to be my only releif.  I swam for the last three days and really thought that it was why I was feeling so much better.  I was wrong.

I know I have posted the same complaints and realize there is not answer.  I will see the MS Specialist on Monday and tell him all of this.  But I have that hidden fear that I'll get there and he'll say it is not MS.  I don't know why.  

Coming to grips with this is a pain in the a$%.

My kids are all home from school.  Te older three are home and the little guy is at the pre-school during the day.  That's a gift in itself.  I love him more than anything but he is demanding.  How much can I depend on my 11 year old daughter.  I don't want her to grow up feeling like he was the second mother.  I finally taught her how to use the sewing machine.  Shes been asking me for weeks and although I feel like crud, I dragged it out and showed her how to use it.

I live in CT and we always make trips to NYC with the kids.  My husband and I grew up in the Bronx, NY and feel it is important for the kids to experience Manhattan.  They have been asking if we can go and guess why we can't?
Mommy can't walk that far.  If I make the trip and do the walking, I will be bed-ridden for two days at least.

The funniest thing bout all of this is that I am a very upbeat spiritual person.  I am the first to help another in need and do the next right thing always.  I don't even question why I have this disease because I am sure there is a reason that hasn't been revealed yet.  I just can't help to realize that my light is dimming.

Well everyone, that is my rant for now and as always I thank you all for your friendship.  

I look forward to the feedback.  I just can't help thinking that this is progressive and that I am not going to get better.  It's a gut feeling and my gut feelings are usually right on the money.

[katie4242]

I'm sorry you are not feeling well, and I pray that your tide soon turns for calmer waters.  I know exactly what you mean about the "mommy guilt."  I have only been dx'd for a little while and my only true relapse has been ON.  I have occasional symptoms, numb hands, MS hug, etc that slow me down, but so far, knock on wood, nothing major.  I do; however, live in fear every day of not being able to "do things" with my kids.  I have almost gone overboard the other way; trying to keep this frantic pace of doing everything while I still can.  I appreciate what Julie said about the lessons our kids will have from having us as their mothers.  A different experience for them that will hopefully make them into stronger, more caring and appreciative adults.

Take care, keep cool, and feel better soon,
Katie

[Sparkysarah]

I am usually such a positive person but my mojo has taken a bit of a battering at the moment as I am not heading for 9th week of relapse and that MS dance keeps kicking in.

So I thought I wd just post to say that I really get where you are coming from, as I kind of feel that is where I am at too. I think it really takes time for acceptance of the dx of Ms to sink in and it is only when in relapse that it really hits home when everything is such a struggle and fatigue is overwhelming. The longer it goes on the harder it is as the questions arise..am I going to improve?, how much longer can this go on? and the family are all tryiing to be supportive but obviously a bit bored of Mum still being tired all the time.

Anyhow I just wanted to say that hang in there, we will get through it and there are many understanding friends on this forum who are there and who offer great support.

Love and hugs

Sarah x

PS I thought you had had some lovely responses, really helpful and understanding.

[sllowe]

Kerr,

Don't you beat yourself up over what your unable to do for others right now. That's too much pressure on yourself when your energy is limited. Hold on to the thought that you can still push through things, but at a slower  (much slower) pace. It may not even be multiple things - you may only get through one task each day.

Do take that one accomplishment to the bank girl :) and don't forget to feel good about it!

-Shell

[kerrtelli]

Thanks so much for your words of encouragement.  Footsteps is and always will be my favorite poem.  Thanks for the reminders.  Tomorrow is a new day!

[Sidesteps]

(((Kerri)))

I just wanted you to know I am listening. I am not where you are but in reading your posts, I am inspired by you. Hang in there girl. You are grieving and that is really really hard work through.

When I was grieving the death of my first husband. It was far easier for me to think I should ride each wave as if it was THE wave. The problem was sometimes those waves weren't predictable and it would hit without my realizing it was coming. Those were the hardest.

Then one day, I was able to stand on the beach and let the waves crash at my feet, I realized that I had found my new normal and had learned to manage the waves better by asking for support and mindful prayer. My lesson? I had put so much energy into fighting that I forgot to have Faith.  

Whoah, I just read Julie's last sentence...


Footprints in the Sand
  
  
        One night I dreamed I was walking along the beach with the Lord.
             Many scenes from my life flashed across the sky.
                  In each scene I noticed footprints in the sand.
                       Sometimes there were two sets of footprints,
                           other times there were one set of footprints.
  
                                  This bothered me because I noticed
                                that during the low periods of my life,
                             when I was suffering from
                         anguish, sorrow or defeat,
                     I could see only one set of footprints.
  
          So I said to the Lord,
      "You promised me Lord,
         that if I followed you,
             you would walk with me always.
                   But I have noticed that during
                          the most trying periods of my life
                                 there have only been one
                                       set of footprints in the sand.
                                           Why, when I needed you most,
                                          you have not been there for me?"
  
                                 The Lord replied,
                          "The times when you have
                  seen only one set of footprints,
          is when I carried you."
                                                   Mary Stevenson

[jujuminx]

I am so sorry Kerri.  I felt the same way in the middle of my relapse.  It was horrible.  One day progress in the right direction and then I would wake up and feel like cra p.  

While the pool temporarily made me feel better, it wasn't a cure. I would encourage you though to continue with the exercise. It is so good for your mind and body, even if temporary. Your soul needs to be reminded of what it's like to feel good.

The guilt you will feel about your kids is inevitable. Instead of looking at what you are not doing b/c of your illness, look at what they are learning and what will change about them for the better b/c of your illness.  They will be more empathetic, more patient, more able to work as a team, they will learn about responsibility, etc.  It may not be what you had planned but good can come from it. Perhaps some of your family and friends can step in and plan a few trips with your kids for you?

Coming to grips with potentially having something that is incurable and lifelong like MS is major. I don't care how strong you are, it will knock you flat when you are facing your future with uncertainty and fear.  These feeling will come in waves. All I can offer is that in time you will recognize the depression(?) and jarring reality of what you might be facing and learn to cope more effectively.  

We have no choice but to move forward. And even in that, know that your children will learn a great life lesson by watching you. It was important to me to finding meaning in my fate, whatever that might be.  My biggest epiphany was that it might not all be about me, but it may be about what I am reflecting to others.

Hang in there and ride the wave. Hopefully some answers are just around the corner.

Julie