Sep 12, 2014

Looking Back - My Story (Post from January 19, 2014)

January can be the perfect time to reflect on the past year, your triumphs, and heartaches and set new goals for the future.  As I look back, I am amazed at how much has happened this last year to friends, family and myself.  When I remember how he (God/higher spirit) has brought me through many trials and tribulations in my past, I have confidence and faith that he will see me through anything I will have to face in the future.  The loss of my father this last year has affected me in a way I never thought it could, I miss him every day, in the beginning when I got really depressed, he came to me in a dream and told me everything would be okay, sure enough a few days later my step-sister contacted me which really set my mind and heart at ease.
It is so funny how you never really hear much about something but as soon as it happens to you or a friend all of a sudden you notice how many commercials or people you know have someone in their life with the same issues Cancer/MS/Fibro.

7 years ago I did not know much about MS other than my grandfather had it and a general idea what it was.  Once it was suspected that I had MS, I found out lots of people I knew had someone in their family that has or had it, now with the diagnosis of Fibromyalgia on top of the MS, all I see is ads for it and Dr. Oz did an episode too.  Now I find out I have a few friends suffering the same as me.  I really feel for anyone going through this as you never know from day to day what you will feel like and it is frustrating, or you have to deal with people looking at you like “you look fine, so must be in your head”

I try to remind myself that there are worse things that could happen or someone worse off than me so do not be sad just smile and suck it up you can get past the pain or fatigue. People are always saying just don’t think about it but the more you try to forget about it, the more your brain likes to think of every little thing.

I really need to understand the importance of distraction and the necessity to have fun in my life (for me it is crafting).

I may have MS and Fibromyalgia, but it does not have me. I cannot and will not let illness and pain rule my life or define who I am.

“For women coping with fibromyalgia, there is often a feeling of immense pressure to live up to others’ seemingly impossible standards and they feel frustration, shame, and high levels of stress when they cannot meet these expectations.”

I find this to be true with me, I have always been a people pleaser,neat freak, and have a hard time saying no. But on the other hand when I feel I have not pleased someone I am much harder on myself than the average person might be.  I tend to fall into “Unhealthy guilt”, which is the kind of guilt you feel about things that we have no control over, like my illness. This kind of guilt serves no purpose, makes us suffer for something that is not our fault, and frequently leads to self-hatred and feeling like a failure.  When I cannot go to work, or am too tired to clean the house or have to cancel plans I beat myself up inside and get really upset but try not to show it, or I make myself do it even though I will pay for it later on.  Little comments by friends or hubby whether joking or serious really cuts to the bone.  What people seem to not understand are some days I have to make a decision to either shower or fix something to eat because doing one thing just exhausts me beyond belief.  I am told “NO” you can do this and work 8 hours then travel home and continue on with your schedule but in reality what happens is I shower, cry then finally get dressed go to work. Day one might not be too bad but by day two, I struggle through the day with a migraine brought on from the fluorescent lights etc. then finally get home and all I can do is go to bed, might sleep an hour but wake up with leg/hip pain burning in feet calves, pain in wrists and fingers. Next thing I know the alarm is going off 4:30am time to do it all over.  What kind of quality of life is this for anyone?  You get told it is psychosomatic yet you tell yourself every day I wish I was better and life would go back to normal so if psychosomatic then why aren’t I better.  I feel guilty for disappointing everyone I work with and my husband, family and friends.  I cannot remember what normal is anymore as it has been so long, I want to be happy and my husband be happy and not worry so much.  Thanks for listening, it felt good to write this and get stuff out.  Now on to happier things like a card or funny post tomorrow.
Hugs, Karen

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