WAFM to DAHM

First I was a work away from home Mom and it was very hard....then I was a SAHM - stay at home mom and mother of 4- then I tried being a WAHM - work at home mom and that was awesome......But now I am a DAHM - Disabled at home Mom and I am doing the best that I can to make that Okay! Recently I have added caregiver and advocate to my 84 year old mother who suffers from Dementia and mental illness. Such is life... I hope you visit here and find a reason to smile and a little Joy!

Tuesday, March 4, 2014

What...CAN...We Do?????


I have been hibernating for the past few months and I am gradually trying to drag myself out of my cave.  This happens several times a year, especially when it is very cold.  We have had an unusually cold crazy winter here in SC and by no means am I complaining because I know other parts of the country have it much worse.


When I lock myself away, I have a tendency to think and rethink things and sometimes that's not good for anybody.  But....that doesn't stop me.  (Smile)  Anyway, I have been thinking a lot about something that I truly don't like and I am sure many with chronic illnesses may agree.  I know we all have our own list of pet peeves and much of them are more than likely the same.  For me I just hate it when a friend or family member tells me "You can do what you want to do".......  Really??????  What the hell - IF I could do what I want to, I would dance, and shop and run and on and on and on.  What many fail to see is that if we could do as we please, we surely wouldn't choose to be at home missing out on so much of life.  We try and make the best of our new reality and it appears that this is our choice.  I think I speak for most when I say it is not!

As this poster reminds me, thoughts can take me down if I don't get them somewhat under control.  One way for me is writing so here I am, pouring out my dribble and hoping it will help others who understand it all too well.  An idea struck me as I was dwelling on this pet peeve and I thought it might be helpful to us all!  I decided to create an FAQ - one that would be useful to many of us as a whole.  When someone gets on your last nerve or just because, you can share this little ditty and hope it sinks in.  Let me know if you have suggestions for additions.  It is a living breathing statement and I know that I will think of more very quickly as soon as they rotate around again in my brain.

Frequently Asked Questions About ME/Chronic Fatigue/Fibromyalgia and Chronic Pain
  • Q:  Are you really that tired?  I get tired too and I just keep going.  Why can't you?  A:  There should be another word in our vocabulary that explains or exemplifies how tired we get.  There is no true description but the best way I can explain it is to say it is like you feel after surgery or a very bad bout of the flu.....exhausted, drained, too tired to even breathe on your own.  The harder we push ourselves, the deeper hole we dig and the longer it takes to feel any relief.
  •  Q:  If you just go to bed earlier and get a little more sleep, you will be fine.  A:  This is a truly frustrating idea for us to hear.  No matter how much rest we get, or how much sleep, it really does not help.  It can keep us functioning but it will not make the fatigue go away and it will not allow us to sleep less.  It just doesn't work that way.
  • Q:  Take a shower - always makes me feel better.  Why don't you try that?  A:  If only I had a dime for every time I have heard that suggestion.  Unfortunately hot showers and or baths can be relaxing and help with pain but usually increase fatigue and take a good while to recover from.
  • Q:   You look fine and don't look disabled.  I think you are fine.  A:  I read a little sign once that answered this perfectly ~ it said "you don't look stupid either".  As many have said these are, for the most part, invisible illnesses.  Some of us do have rashes and in time look haggard from lack of sleep but there is not much in the way of our appearance that gives it away.  With time my ability to walk has changed and many of us suffer from balance issues as well.
  • Q:  Oh I think you just have _______________.  My sister, friend, brother, have it and they are fine.  A:  Please understand that most of us have been through so very many tests and doctors and meds, and every other possible cause of these problems has been sought out and YES I have seen a psychiatrist too it's not all in my head.  Really we don't need your diagnosis as well.
  •  Q:  I heard there is a medication you can take to make it go away.  A:  Fibro and ME/Chronic Fatigue are very complex illnesses and there is no one prescription that will cure or take away all of the symptoms.  There are medications that can alleviate some of the symptoms but nothing can make it all go away. 
  • Q:  I am sure you could find a job sitting down.  A:  Unfortunately sitting does not allieviate the pain and many cases it makes things much worse.  Staying in one position and one of the worst things you can do and will definitely cause all sorts of issues.
  • Q:  I am sure you could work from home.  A:  Many of us have worked from home, remotely and any other way possible.  I did it for over 14 years after I was diagnosed until I could not do it any longer.  The complexities of these illness make it so difficult to work in so many ways.
Well, as most of you know, this is just a sample and the tip of the iceberg.  I have mentioned some of the most personal for me but I would love to know what others are hearing in their own lives.  Information is power and if we all work together to try and make ourselves understood, maybe one day it will make a difference for those who also walk this path.  Email me at lslee@sc.rr.com with any ideas to add to the list.

Another resource I wanted to mention in this l-o-n-g post is the BYDLS web page and the spoon theory.  My daughter-in-law told me about this site and the theory is a very simple way to explain how we live out our days.   That link is below - share it with your loved ones if you haven't already.  It is truly awesome!

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

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