Ahhhhh!!! I have laid in bed since earlier this evening…and yet sleep still eludes me! My hips and knees feel broken…my ankles are swollen and the rest of me….well if there were words to describe it…I would use them! Yes I am annoyed…annoyed because so many people (yes even today) give me speeches on how great I look, how much I do and how I must be feeling great….because I look great!

If only those people could see the true life I live! If they could see how I can barely move, or if they could see the tears shed because my body hurts so bad! If they could sit up and talk to me because I cannot sleep thanks to my pain! But alas they are not here! They don’t get to see my anguish and suffering and so they don’t understand the life that comes with RA and Fibro. And to be honest, it is heartbreaking!

It makes me so thankful for people who do understand! Although in my face to face life…..that number is probably less than what I can count on one hand! I am thankful for E, her texts all day keep me smiling and pushing on! I love checking emails because L usually sends me stuff when she can, makes her seem like she lives next door. And R wow, she is like a big sister and she keeps me going when so many times i want to quit! I’m thankful for my husband who tries so hard to ease my pain and waits so patiently to help while I cry in pain. I am thankful for them and others who do their hardest to understand the life of invisible pain that I live with every day.

Having an invisible disease is not easy! It makes you so strong but at the same time, some days you do just want people to get what you live with daily! Yes I am strong but I need a hug and to be carried some days! For those that do carry me, thank you! To those that don’t….please try to understand me!

Don’t ignore me for months and send me one line messages about how much you think about me….when obviously if in the last 7-12 months you have done a horrible job of keeping in touch! Your actions don’t match your words! Please remember, match your actions to your words! And don’t tell me…you look great so you must be feeling better! That doesn’t help me! Please don’t treat me like I’m an invalid and someone who cannot contribute, I may have barriers in my life but I have proven to be resilient!

Yes ahhhh that’s a pretty accurate description of the way I feel! I hope tomorrow the ahhhh is replaced with a smile 🙂 again!

3 thoughts on “Ahhhhhhh

  1. I am so sorry you are having such a bad night! I am sorry people are insensitive but it is because they do not understand pain or what you are going through. I so wish I could make things easier for you. Cyber hugs to you!

  2. I can completly relate to it being a invisable disease that people and friends do not fully understand. I can’t begin to to tell how many ppl will say just get up and start moving and you’ll be fine.

  3. I feel for you. I have fibro too and having an invisible disease is tough. I’ve found that my friends and family who are supportive are very important to me and those so called friends who only care until the times get hard — like they are now — just aren’t worth my time and energy anymore. I’ve let those people just fade away. I don’t try to keep in touch. If they don’t try, why should I? I had a bad day yesterday. I pushed myself too hard at work all week and am paying for it now with a flare up. Thankfully, the pain is better today as I asked to come into work a bit late since I was so exhausted. I slept (well was in bed for) 10 hours last night. When I woke up, I went for a walk with my dog to loosen up my body some. My hips still are stuck though and it’s making walking hard. I’ll have to do yoga after work. Hang in there! I had a bad night last night emotionally. I was really done on myself and life, but a night’s sleep and the mornings always bring a new perspective for me. Stay positive and strong! You can do it! Soft hugs 🙂

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