Tuesday, June 21, 2016

Living With An Invisible Condition

Living with an invisible condition is maddening.  You look normal and ok most of the time, but you're not.  You can be totally fine one moment and unable to do much the next.  You feel crazy, you feel like you're letting the world down, and you just want to be normal.  

Here are a few things that I would like those of you who are lucky enough to not have an invisible condition to know.

I am my biggest and worst critic.

I often look in the mirror and wonder if this inability to move right and/or think straight that pops up out of nowhere is all in my head, especially when all tests so far have come back "within normal".  I think to myself, if I just wanted it badly enough, I could make my brain or body work.  It's not true.  I truly can't make things work that refuse to, but I want to make them work.  I feel like the biggest let down to those counting on me, and I would do anything to be "normal", but I am not.  I struggle with feeling less than, and I want to be what I was before.  I mourn the loss of who I was as I work to accept who I am now.  It's a hard process, especially if you don't have support, and even if you do (like me).

I need you to believe the best about me even though things are different.

Unless you suffer from or have suffered from an invisible condition yourself, you will have a hard time accepting or even understanding all the changes that take place in the life of someone with an invisible condition, and believe me when I say that I am kinda glad you don't "get it".  However, I need you to trust in who I was.  That person is still here.  The person who was there for you when you needed someone, the person who helped out when she could, the person who volunteered for things, the person who joked and smiled and wanted to go to that event - I'm still that person.  I still want to be there in any way that I can, but that isn't always possible now.  It may seem like I'm "always" saying no to things, but I will say yes when I can.  If I am saying no or cancelling last minute, it's not because I hate you, don't want to, or am trying to get out of something, it's because I truly cannot do it.  Believe the best about me - that I will be there in any way that I can for you - because that's what a true friend is and how I roll, and it's what I choose to believe about you, too.

I probably won't ask for help even when I need it.

I am working on this one.  I feel like I'm letting you down by not being able to do the things I used to be able to do, so I will probably not ask for help with the things I'm struggling with, too.  I will make appointments whenever I can on days that I know won't interfere with my husband's work schedule so that he doesn't have to miss work.  I will take a week to do a project that should take an hour simply because I don't want to burden anyone else.  I even have a special to-do list for days when I am feeling capable and will leave those tasks until those days (no matter how badly they need to be done) simply because I don't want to ask for help when I know you're already busy, and partly because I need to know I can still do things on my own.

If you can't tell I'm having trouble, that's on purpose.
I work very hard to look normal.  I try not to use my cane, even if I could benefit from it.  Every day I have to choose to find joy, and I look for it.  I scour God's Word for encouragement, I surround myself with people who will pray with me and for me, I hum uplifting hymns and songs, I play and laugh with my kids as I'm able, and I find ways to encourage others.  If my condition is truly invisible to you, I've done my job.  Life is too short to live in the darkness.  I choose light, and I choose to "bloom where I'm planted" whenever I can.  I fail sometimes, and I can't always look "normal", but I will do my level best to do so!

This isn't everything, but these are the main things.  

Maybe you have more questions or are curious about something - feel free to ask via commenting below or via email.  I'd rather you ask than assume. :)

Maybe you are wondering how you can help me or someone like me who is struggling with an invisible condition.  I know you can always pray for me and lend an ear when it is needed, and I know you can do that for anyone in a position like mine.  Kindness goes a long way, too.  

Invisible conditions are hard, and they are even harder alone.  We need all the support we can get, and I hope I can count on yours.

Saturday, June 4, 2016

Monthly Milestones 2016 {6}

Today is the sixth Monthly Milestones of 2016.  If you want to share a milestone post, just leave a comment below with a link to your milestone post, and I'll pop over and visit it and leave a comment, and hopefully some of my other readers will, too. :)  Normally, Monthly Milestones, where I will be giving you updates on how I am doing physically, mentally, etc., will go live on the first Saturday of every month, though sometimes I may be a day early or late depending on circumstances.

Here is how I am doing as of today:
Me as of today, June 4, 2016, at 235.5 lbs.  My cat, Crush, decided to join me today. :)

  1. My weight is a continued frustration!  This is the heaviest I've been in a long time, and I couldn't be more upset about it.  I have been more active, and have been feeling better with some of the dietary changes I've made, but that's not been enough.  I think I know a few things that are playing into it, and I'm going to do what I can to change what I can.

    First of all, I have found that I am dealing with a lot of water retention for some reason the last few months.  I kind of wonder if it is due to getting rid of the green tea supplement, but I feel better off of it than I did on it, so I have decided to up my water intake and reduce my sodium intake instead.  So far, that seems to be helping some, so hopefully I'll get a handle on that this month.

    Secondly, I am truly a carb-aholic.  I really struggle with eating too much sugar and carbs, even with cutting back on wheat, oats, and corn.  I really need more protein in my diet.  Starting today, I plan to go to a basically "no carb" diet for a few weeks just to try to get my metabolism jump started, and to get my body off the carbs for a bit (think like rehab, so hopefully the withdrawals won't be too bad).  We'll see how that goes. :)  I've done it before and it always helps, so hopefully it will work this time, too.

    Thirdly, I struggle with eating when I'm not hungry.  That is not so awesome.  I'll continue to work on that.

    All in all, I will keep plugging away at there and my other planned dietary changes, and we'll see what happens.  I will either lose weight or I won't - I can't force it.  All I can do is try. :)
  2. I've been able to get out more!  Most of May was beautiful, and I was able to get out quite a bit for walks.  I'm hoping June stays that way, too, and my body lets me function enough to walk quite a bit.  I did really well the last month physically speaking, and now I'm having issues again with movement.  I'm trying to figure out if this is just the cycle I'm on with my health issues or what.  This is going to be a process!
  3. Dietary/lifestyle changes are still happening.  As I mentioned above and in an earlier post, I'm making some dietary changes.  I've cut out my green tea supplement, removed quite a bit of soy and grains (mainly wheat, oats, and corn) from my diet, and will be removing my multivitamin (as it contains soy) next week or the week after, along with making the changes I mentioned in #1 above.  So far I've noticed that food *does* play into how I'm feeling.  It's not 100% difference, and it's hard to know what all is how this health issue cycles and what all is dietary, but I do notice that the less soy and gluten I have, the better I do in general.  I still have some issues, but they are not as bad.  When I do slip up in my dietary changes and have soy or a lot of grains, then I have worse days.  Now, when you avoid soy, you also inadvertently avoid preservatives 9 times out of 10, and it may be that avoidance that is causing me to have better days.  It's hard to tell, and it will take a while to cement it, but it is something to take note of and talk to my neurologist about when I see her again in July.
  4. I have finished round 2 of my tests, and am waiting on results.  My EEG was last week, and my MRV was on Wednesday, June 1st.  Both went well, there were no pokes (YAY! :D ), and (to my knowledge) they got the information they needed.  I will not have results for at least a week yet, and I may not have them until I see my neurologist in July (sooner if she deems it necessary).  I will let you know when I know. :)

    Please continue to pray for me as I seem to be coming out of a "normal" phase and into a "weakness" phase again.  I woke up Thursday morning with weakness in my legs, especially my left one, again.  I had been having tingling sensations in most of my body for at least a week and some minor issues with my arms (especially my left), but it is transferred to weakness now again, though it doesn't seem so bad today.  It may be diet related as I did have some hot cocoa Wednesday night that did contain some soy/preservatives, but it is hard to say for sure.  I've been sort of off since my EEG, so I find that interesting, too.  Anyway, prayers appreciated that we can figure out the dietary triggers, physical activity triggers, etc. that may apply so that I can work on fixing them.  Thanks! :)
  5. We appreciate your prayers as we make some important decisions as a family.  Due to my unknown health status among other reasons, we have decided that our boys will do a more traditional homeschool program next year.  We are leaning towards Monarch by Alpha Omega, and plan to cement that decision after school is out in about a week.  However, depending on how things go with my health over the summer, there is a chance the boys may have to go back to the local public school again (we plan on keeping our daughter in the local public school for at least another year, and then bring her home if possible).  We'd prefer not to do this, not because the school is bad, but because I want to teach them at home and that was always the plan, but we want God's perfect will in this.  Please pray that God will work out all the details according to His will and glory, and that we will be able to see His will and way in it clearly and undeniably.  Thank you!

    Also, please be in prayer for my oldest son, Stephen.  He saw the ophthalmologist yesterday, as he is having issues with strabismus.  For now, they think they can correct it with new glasses, but there may be surgery sometime in his future to correct the issue.  We're grateful that is looking like it won't be any time in the near future, though. :)
  6.  Blog updates have stalled, though posting has increased! So far, I've been able to make at least monthly changes to this blog and Natural and Free.  Sometimes, I have even been able to make some minor changes, so that's a plus.  I am hoping to do more when school is out in about a week, but I'm not sure I'll be able to.  We shall see. :)

That's about it for now.  How are you doing?  Are you reaching your goals?  Have you tried something new?  Come up with a new recipe?  I hope all is going well with you, and I hope you will leave a comment sharing your thoughts and/or milestones (with a link to your post, if you wish).  As always, I wish you the best of luck in all you do, and hope you will return soon! :)