OT: chronic mono or any chronic illness

[scrappinsweetie]

hey girls, I was diagnosed in november with chronic mono. i was doing great until a couple weeks ago then i bottomed out again. it is sooo irritating. i look fine, feel ok for the most part i guess, but have no energy and it makes me soo mad. i am learning how to manage this but does anyone else face this type of frustration? anyone have any tips on how to deal with it? today i want to make an altered project really really badly but i just can't seem to muster up the energy to do it. i am so frustrated i want to cry.

[scrapsandsass]

I'm so sorry for what you are going through. I don't really have any experience with with a chronic illness, but I have a couple of friends who struggle with different issues.

My own little suggestions:

• if you don't already, start keeping a journal (and try your hand at writing some poetry)(research shows these things really help improve health). It can be a place for you to vent, or to just keep track of what is going on. It can also help if you document things you don't want to forget to talk about with a doc.
• be patient with yourself while you adjust to health issues and maintaining a different lifestyle. if you have to slow down and make changes, it is okay. it is most important to take care of yourself.
• ask for help when you need it
• take a couple minutes out of each day to find something that will make you laugh
• celebrate the positive things in life even when it feels like they are few and far between
• check out the community at http://bravegirlsclub.com -- they always make me feel better about life

I hope someone will have some experiences they can share to help you out.

Hugs!

[scrappinsweetie]

thank you for that link. i am going to check it out.

[Libby Pritchett]

I just wanted to say that I totally feel your pain! I had mono in 2009, and it was the worst time of my life physically. It was a good 6 months before I started feeling at all human. Although I haven't been diagnosed with chronic mono, I know my body has never fully recovered. While I don't have the day to day symptoms, I do have periods of time where I am just so weak and tired that I can barely function. I'm sure it's residual effects from the mono because I never got like that before.

I'm sorry I don't have any advice. I did want to share something with you though? Have you read The Spoon Theory? It's an excellent story to share with your family and friends to help them better understand what you're going through.

*HUGS*

[scrappinsweetie]

i haven't read that libby but thank you for pointing me towards it. i am going to check it out.

you are so right about feeling great and then out of the blue it knocks you on your butt. it is sooo aggrevating.

[taracotta7]

I don't really know what you are going through but I will tell you what has helped my energy levels. I was just WORN OUT and didn't have energy to do day to day tasks. My dr. recommended that I took B12 supplement to help. It has worked for me. I get the kind that dissolves in your mouth. It is suppose to be better than a coated pill. I get it at our local health food store. They also have it in the vitamin aisle at walmart, CVS, Walgreens, ect. It doesn't work like an energy drink or drug to me........those totally made me feel like I was having a heart attack and dizzy. This is just something to give me a boost without the shakes and rapid heartbeat that I found with the other stuff.

I hope you get to feeling better soon!!!

[scrappinsweetie]

Libby, thank you! my dr. and i talked for over 45 minutes yesterday and a lot of what she said is in this, just said in a differnet way. thank you so much for sharing it with me!