Monday, November 29, 2010

That time of year - when you find out who your true friends are!

Today and last night have been the worst pain day for me in probably over a year. I mean I have had some major pain days but it would peak and then would go down to a somewhat manageable level for the most part.I wake up and it takes me a couple hours to be able to get going and some days I go faster than others but I am able to go. I usually have a mid afternoon slowdown but for the most part my pain level will peak and then level....again some days it will peak longer than others but not for over 24hours! That is what I am dealing with now!!
My pain started when we left the beach yesterday to head the way, really enjoyed spending time with my parents and daughter. My nephew Eddie is all boy!!! I love it when he comes into my room in the morning and looks at me with a sweet smile and says cartoons. Of course I put them on and then he snuggles in bed with me.....little does he know that I love it because I get to lay there and snuggle with him.....nothing like that first thing in the morning snuggle!!!

Anyway I ended up going to bed about 10ish and have not gotten off the bed since then. Well I have gotten up 2 times. 1 time for something small to eat and 1 time to get some water. I just realized though that I have not peed all day and it is now 5;14 in the IC is loving me right about now!!! That could explain why my bladder feels like it is on fire and my lower back is ready to break...this past weekend, I actually drank cherri pepsi. I NEVER drink soda!!!! What the frig is going on with that????
Last night my sleep was terrible! I kept thrashing about,,,I kept waiting for Jim to roll over and tell me to STOP IT....I felt so bad but I hurt so bad I just wanted to scream!!!! When I finally fell asleep I think I got about 2 hours of sleep and have been awake ever since.
Jim just said, "well at least our bed is comfortable" and I told him not if you are laying in it ALL day! I have zero legs just don't want to work and feel like they weigh a ton when I walk....forget the stairs.
I just don't know if I can handle another winter like last year! I am a happy person and last winter almost put me into a deep depression....

One of the best parts of me blogging has been the friends that I have made and that some of my local friends have been able to read about what I really go thru.

I think that having the pain is beyond awful! The tiredness that you feel is overwhelming but the loneliness that you feel is by far the worst of them all!!!!! People/friends don't want to be bothered by your pain...they just go on with their lives and when you can get back into it well ok then. It also amazes me how different my friends can be....for instance I have 1 very dear friend who I think the absolute world of and she suffers with alot of pain problems and we talk often, well this morning I called to wish her a happy birthday and she was more concerned about me and what she could do for me. I quickly changed the subject because it is her birthday and I want her to celebrate it and be happy but the fact that she really truly cares and shows it with her love. Then I have another very dear friend who I was speaking to and I mentioned that I was still in bed and it was past 4:00 and not once did she say I hope you feel better, whats wrong, anything I can do to help you.....I often wonder how people can be so different? Where is the compassion? Then I have the friend that acts like she cares only when other people are around!! This friend doesn't even begin to try and really understand what I go thru....So yes, I feel very isolated some days!
Don't get me wrong, if any of you have read my husbands post then you know I am truly blessed with a loving and supportive husband who I love with ALL my heart. But he works during the day and I cannot expect him to talk to me every 5 minutes.....
Lord, I pray that this goes away and is not something that stays all winter long...I REALLY DON'T THINK I CAN DO ANOTHER WINTER LIKE LAST YEAR...

Hey, I know what I will do....I WILL GET A TANNING BED LIKE MY SISTER IN-LAW and put it in our up stairs multi room :) at least I could get some warmth and sun that way...

The pictures that I posted are from Thanksgiving weekend,,,,and as soon as I find my camera I am going to take a picture of how I look now, yes, I said how I look now and post that picture too. Then you can see what fibromyalgia can really look like.


  1. From here in Ohio, the weather can be my worst enemy for my fibro and RA. I was just thinking today that I haven't had a "steady" season in about 2-3 years, which means I haven't been able to acclimate to any season. It's curious as to whether friends are tired of hearing about my disease or are just at a loss as to what to say. Whichever the case, what I do know is that those who are truly my friends will do anything they can to help and attempt to understand what's going on. I, too, have a wonderfully supportive husband and it has made a huge different in how I've learned to deal. Thanks for sharing how things are truly going. I've been there.

  2. What a great job you have done describing a fibro flare. Few people understand the weights on the limbs, the ache in the muscles, the burning stabbing pain, the "Just can't move" feelings like someone else who goes through it. I understand and care. Hope you feel better real soon.