Sunday, September 25, 2011

9/25/2011 Adapting

The original purpose of this was to raise awareness of FMS/CFS.  Here's the deal.  We are still in this.  Lately though my health has been BAD.  At times I have not been able to use my hands and my feet have been numb.  My arms have been too painful to raise even halfway.   Simple things such as showering, brushing my hair, brushing my teeth, eating is very painful if not impossible.  At times I couldn't type or even grasp a cup.  My doctor adjusted my meds, had me on steroids for a round which helped some and suspects MS as well.  She wants me to see a specialist.  At the moment I have an appointment next month but our insurance will be changing at the first of the year for the better so we many cancel and wait it out til then.  (there isn't much else they can do different if it is MS and they find lessions in the central nervous system of most long time CFS patients anyway)

This has also prompted us to consider a possible/probable change of plans.  Derek thinks and I agree that biking would probably be easier on me and safer, less stress on my joints and muscles, more miles covered in less time and the bike would pull more of the weight of the trailer.  It seemed that carrying the pack was what really did me in also and there are a few other reasons.  It just makes sense.  It would enable us to carry a few more things for my needs.  Also while we do intend to camp a LOT.  We have recognized the necessity to have the funds saved to be able to stay at hotels when my body demands the rest/down time.

THIS WILL HAPPEN!  It may turn into a ride for invisible illness period.  And it may ...I'm sure it will be slow going.  But this snail will show you that the snail can make it!  I will promise this, if I have subscribers to this from the United States I WILL at some point walk or ride my bike to say hello. ;)  My HOPE is to be able to make that promise to European friends as well someday.

I'm pretty down right now, physically and emotionally.  But we can't allow this beast to rob us of living.  Somehow we must adapt while we strive for a cure.  I'm TRYING, I'm trying..IT WILL HAPPEN.

Sunday, September 4, 2011


It's been a while since my last entry for two reasons:  1)  I'm in a major flare and haven't been on the computer or doing much of anything.  2) I haven't been doing much of anything. :( 

I'm REALLY  struggling with this.  If only there was some way anyone who reads this could look into my heart and see just how much this means to me.  That's the thing about this illness, at least when it gets severe, it robs us of our hopes and dreams and those are what keep you wanting to get up in the mornings. 

Think about it, you might hate your job but it provides a means to  attain your dreams so you get up and slug on day after day.  It's the DREAMS or for some maybe goals is a better word you can relate to that keep you going?  The nice house, providing for your family you love, getting the supplies to be able to participate in the hobby you enjoy, setting back the money to take the trip you dream about, finishing the degree you stive for...dreams and goals.  Now, imagine having 99% of those ripped away from you or made equal to climbing Mt Everest.  How would you feel? 

We aren't done!  Now, on top of that every morning, nearly every waking moment you have to battle the most intense pain you have ever felt in your life in every single part of your body.  Far worse than the worst labor pains from child birth AND there are a lot of people who do not believe that it's that bad or even real at all.  Now how would you feel?

We still aren't done!  Remember I said 99%?  That 1%?  Your kids, your family.  You WANT to do everything for them.  You WANT to give them the best of everything.  They are afterall your one reason for getting up!  You want to spend time with them, do things with them, for them, provide well for them, be an ACTIVE part of their lives.  Instead you are a parent they remember as laying in bed more often than not, the reason they couldn't do things or have things other kids did.  Not exactly how you want your children remembering you is it?  NOW HOW WOULD YOU FEEL?

Derek and I talk about it a lot.  I'm not "suicidal".  At least not in the typical way.  I want to live.  In fact I probably want to LIVE more than most of you!  "So get on with your life!" you say?  How?  Get on with laying in bed crying in pain?  Because that's my life.  When I try to push and LIVE  it ends up making it worse than ever.  I've tried giving myself pep talks...there's still plenty of time!  This time of year is always bad for me.  I'm actually doing good not to be in the hospital. (which is true) Things have been particularly and unexpectedly tough and have called for me go, go going in a way that I simply couldn't physically and emotionally (emotional stress takes a huge toll on FMS and CFS) but had no choice lately so give yourself a break you'll bounce back! (I hope) But what if I don't?  I do not want to spend even 5 more years like this let alone 20, 30 or maybe even 40!  I can't. I'm sorry.  Call me selfish if you want but I simply cannot live a life like this.  And I would turn the tables on you and call you selfish for expecting me too!  You think I should spend years laying in bed in excrutiating pain for what?  For who?   If this is something that eventually I and my husband and children understand then what business is it of anyone else ESPECIALLY when not one single other person has vested any time to help make me have reason to choose any differently?  If an animal were suffering half this much people would put it down out of "compassion" yet people lack the same compassion for human beings!  They offer no answers, no relief, no help...just "suffer so I feel better".    If you have other ideas and want to be part of the solution by all means come on over!  I will hear you out and might give your idea a try if I haven't already and can afford it!  But DO NOT sit back, not involved in my life, knowing very little about me, not knowing what has and has not been tried or what I do or do not have the financial resources to try and follow through with, guessing and judging me for choices I make if you are not choosing to be an active part of my battle.

That said I am NOT  condoning suicide!  NO NO NO!  God No!  If I thought I had ANY chance at a life outside of laying in bed alone in pain then it would be a no go.  If anyone is reading this and feeling that low and you have anyone you can talk to about how you are feeling please TALK TO THEM!   What I am talking about here is 24/7 severe PHYSICAL pain.  Lately there have been times I couldn't move my arms or hands, could barely walk to the bathroom which is in my bedroom.  I need to shower and can't because it hurts too bad.  And financially we cannot afford for me to even go to see our family physican let alone a pain management specialist. We have doctor bills out the rear!  Everybody wants their money and they want it NOW.  And I can't do anything to help.  (We have a son who is facing medical issues also)  I have a BIG family who offers no support of any kind what so ever, in fact they don't speak to us at all.  They don't care if I die or my son does for that matter.  He was recently rushed to the hospital an put in ICU for respitory failure and nobody called or visited to see if he was okay.  No, if there was any other option.....suicide is a LAST resort but it IS an option as many before me have proven.

That said, that's what I have been wrestling with.  Is this dream over?  Or is this just an obstacle in the road?  Was this major flare suppose to happen so all of you could see what this BEAST is truly like?   I honestly don't know.  Today I opted to scream and yell about it.  For this moment at least I'm going to continue to scream and yell and hope others with it join in until the world starts listening and a cure is found then that last option will no longer be needed.  Hopefully I and the millions of others battling the beast can hang on and scream and yell long enough....Hopefully...