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
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.
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
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!
(((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
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