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Thursday, March 6, 2014

Learning How to Live with Physical Limitations

Here's some background for this post.  I am a wife and mother in my early 30's with 2 kids and one on the way.  This is my 6th pregnancy, so we've had some pleasant and unpleasant experiences.  Pregnancy for me is difficult.  It's just not a sure thing until there is a healthy baby in my arms.

So we have 2 beautiful girls (7&3), and are pregnant with a boy, yay!  In this pregnancy however I have encountered difficulties that I have never faced before.  Somewhere early in the 2nd trimester I started feeling weak, too weak to even stand up.  My heart would race and my body wasn't strong enough to keep me upright.  Then I had a set of very severe chest pains that brought me to the floor.  The next day I was too weak to do anything, and passed out at home with my 3 year old next to me.  (she was safe, I had her on my bed with me reading books because I knew I was not well)  That was the beginning of it all.  

It took several weeks, tests, doctors and specialists, but we finally figured out I had something.  I was diagnosed with PoTS, Postural tachycardia syndrome, and quite a bad case of it.  Due to this illness I am very limited in my physical abilities.  Let's see, I am able to sit up with my legs elevated.  Fun!  And.....yeah, that's about it.  Of course I do get up, gotta use the bathroom, etc.  I'm a mom of two kids too, so I get up to tend them too, not very much, but sometimes.  And I get to get out of the house for my frequent doctors appointments.  

I've been dealing with this all together now for 2-3 months, and have 2 months left to go.  I think I'm finally at the point where it feels good to talk about it.  I'm past the figuring out what's wrong phase, and the dealing with the diagnosis phase.  I am ready to open up to get out what's inside of me.  I hope that this will help me deal with what I am going through, and possibly help others in similar circumstances.  So if you are struggling with physical limitations, or are a family member or friend to someone who is, here are some of the thoughts and feelings I have had through out my experience that I hope will be helpful to you in your process.

Here are some of the feelings I have felt, they are very honest, but I think they are worth sharing:

At first I had no idea what was wrong with me.  I thought it could all be in my head.  I pay pretty close attention to my body when I am pregnant, maybe I am just being too sensitive to normal pregnancy symptoms.  Besides, who is incapable of standing up?? No one.  I'm crazy.  (this lasted a long time, until I had symptoms that I felt finally required a doctor's attention)

I was SO angry at myself because I couldn't do things.  I was angry at my body.  I hated feeling helpless.  I hated not being able to do things for myself.

My pride kept me from asking for help, and accepting help when it was offered.  Not because I was shy, or didn't want to put people out.  But because I did not want to admit that I couldn't do things for myself.  I felt like if I asked someone for help I wasn't asking for help, I was saying "I can't do something, I am flawed.  There is something wrong with me" and that is a really really hard thing to tell people.  And I certainly wasn't ready to accept that fact myself.

Yes I will admit, Miss Focused on the Positive here wasn't able to stay upbeat and chipper.  I've shed plenty of tears throughout this experience.  I've had to come to terms with a lot of different things throughout this, and honestly tears helped sometimes.  There's nothing wrong with feeling sad.  It is perfectly O.K. to have a sad day every so often.

There are many days that I long to go outside, go for a walk, switch my own laundry, do a project, etc. and I can't.  It is absolutely frustrating to have physical limitations.  Especially when it's something that was so easy, but now either requires help, or isn't possible anymore.
My house has levels.  Kitchen on one floor, family room (tv) on another, bed rooms and bathroom on another.  Due to my physical abilities I have to pick a level and stay there.  It is not easy.  Especially when I was not asking for help.  I'd pretty much assemble everything I needed for the day, hope my kids were ok, and wait for my husband to get home so I had someone to talk to.  But even then he could rarely talk because he had to do all the stuff I hadn't been able to do during the day.  It was lonely.  And I was a pregnant emotional wreck.
Of course it wasn't all bad.  One of the many blessings I've found in this trial is knowing that no matter how awful/bad/lonely I feel, I am not alone.  Not even close.  I know my Heavenly Father and Savior have been with my every step of the way.  They have witnessed every tear, and felt every heartache.  They have comforted me when nothing else could.  They have sent help in the form of dear friends to me.  They help remind me that this will end.  I will get through it.  And I will be better because of this experience.  And, oh yeah, I'll get a beautiful baby boy too. 

I've also felt loved by friends, neighbors, and acquaintances who have heard what we are going through and reached out to help in numerous ways.  I have felt an abundance of love and support.  I have felt the love of those who are praying for me.  I have felt strength from the prayers of others.  I know that when I have a good day, it may entirely be because others are thinking and praying for me.  I know God hears and is answering those prayers, and I am forever grateful.  Probably the most helpful thing you can do, especially if there really is nothing else that you can do, is to pray for them.   

So this is my advice for friends and family of someone who is going through a physical trial:

- Pray for them, 
- Love them flaws and all, 
- Call them or send them notes of comfort, 
- Think of them often, (I kid you not, as I am typing this someone rang the doorbell and dropped off flowers for me)
- Serve without judgement, 
- Don't be offended if they say no when you know they need help, they are learning, continue to love them

My advice to those going through a physical challenge is to:

- Find strength in knowing you are not alone.  I found great strength in learning about my condition, and realizing that there are many people living with it as well.  
- Know that there is nothing wrong with you, you are still the same person you were before.
- One day you will accept and  understand your limitations, and when you do life will be easier. 
- If you are strong enough, tell someone.  They will help you, or find someone to help you.
- Accept help from others (easier said than done, I know)
- Have faith.  Whatever you believe in, how ever you express your faith, do it now and don't stop.  It is only harder if you stop.  Keep your faith strong.  Believe in miracles.   
- Allow yourself to have sad moments, then try to look for something positive in your situation.
- When you are ready, talk about it.  Get your feelings out so you can move on.  

I have learned through this experience that a physical trial is hugely a mental trial.  There are so many mental hurdles you have to get over before the physical healing can even begin.  We can make it better for ourselves or worse depending on how we handle it.  I hope if you are going through something as difficult as this that you will find the help and strength that you need.  My prayers are with you. 

If you have something to add I would love it if you shared it in the comments.