Tired of the pain

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This winter has been especially hard for me. I have new symptoms and I feel afraid much of the time. Trying to do some Christmas shopping this year was horrific. I got stuck standing in line and suddenly it felt as though the muscles were being torn from my spine. I barely made it back to the car with my friend, and I cried almost all of the way home.
I had taken one of my long acting pain meds before shopping in anticipation of problems that I knew I had. Nothing could of prepared me for this kind of pain. AND nothing was helping. I felt like a baby, just crying and crying. Since then my doctor has ordered me a walker with a seat for those times that I am stuck standing in line. Why should I have the embarassment that I do? I should not feel that way, but I do.

My circulation is also bad this winter. My legs from the knees down are always cold and my breathing is getting really bad if I am out in the wind. One day I got stuck pumping gas which I try hard NOT to do, but I was going to run out, so I had no choice. I was bundled up and my face was covered, but the wind cut right through my scarf and it literally took my breath away! I sat in the car for a good 5 minutes before I felt that I was breathing normally again. I did not have my inhalor with me, cause who could of known!

My room-mate situation has not worked out SO now I have to move again. It should be in the next month or 2. Trying to get the money together for that is a challenge and I cannot lift anything over 10 lbs, and probably less after I share with the doctor what has been going on.

I have outside stairs where I am and because I don't have the help that I was SUPPOSED to have, I suffer a lot just trying to get ME up the stairs, let alone any of my groceries. Just another time to get the tissues out, after a good cry.

Each day I ache all over. I know I need something different or a different schedule for my pain treatment yet I am ugly that I have to rely on what I have to rely on to get out of bed these days AND I AM SICK AND TIRED OF NOT KNOWING WHAT IT FEELS LIKE TO FEEL GOOD. I JUST WANT TO BE NORMAL FOR ONE DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And with all of this, I still count my blessings because I feel like I have so many.....I sometimes feel guilty for complaining!! And as much as one would think people today would know more about this illness it just feels like they do NOT! IF THEY CANNOT SEE OUR PAIN IT DOES NOT EXIST. WE LOOK GOOD SO WE MUST BE OKAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My boyfirend broke up with me, after 7 years because he could not handle the stress. Geeesh can we even have a normal relationship for God sake!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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  1. Shining Star's Avatar
    I am so sorry to hear of your hard day - it's a hard life with lupus!!
    I am in England and feel the cold sooo much, so this year Mum bought me my first electric underblanket - which has been great.
    Is it freezing in New Hampshire? I'm in England... cold, but the snow recently melted... everyone has the flu though!!
  2. EllaBlue's Avatar
    Thank you Star...and yes NH has been very cold. We are expecting a storm this Tuesday night into Wed. if the weather man gets it right and it appears to be......
    I have an electric blanket too! It does help, but overall I feel cold right to my bones!
    I used to get more hotflashes (lol) and I had the house at 68...and now that barely keeps me comfy.

    Many of us either have or have had the flu too! Needless to say I am looking forward to spring. THEN of course when the heat comes I suffer then too. IS there a "Lupus Island" someplace where we could all gather and feel comfy?????
  3. Shining Star's Avatar
    Yes there is a place - it's called Nikoi Island, in Indonesia Check these pictures out from my blog... my moment of heaven...