January 12, 2011


Hi everyone, it’s been awhile!  Within the past few weeks life has taken another turn and left me scrambling to pick up the pieces yet again.  Right now, most colleges are on winter break.  For most people that means a lot of relaxation and seeing friends from back home.  For me, it means that it’s time to make a decision about next semester and whether or not I am ready to go back to school.  About three weeks ago, tuition was due so I told my father to pay it in the hopes that I would be ready to return to Clark.  I wasn’t feeling great at the time but I figured I still had a month left for recovery.  That was my plan and I didn’t even want to think about other options.  To me, there were no other options.  I’d had enough of living at home and I would be better in time for school. End of story.  

Time went by and I had some good days where I managed to see friends and even spent a whole afternoon shopping, an activity I never would have dreamed of months earlier.  Granted I slept for about 24 hours afterwards, but it was progress.  Then one morning I got up and took a shower.  As I stood under the water, pain in every limb, I tried to talk myself into having a semi-productive day.  This is how a lot of my mornings start.  Sometimes the pep talk works but more often, its just a small whisper in the face of loud screaming from the fatigue, pain, and dizziness.  On this particular morning, I just wasn’t having it.  I had to sit down to finish the shower on the floor because I was too weak to stand.  And that’s when it dawned on me: I’m not ready.  I can’t even get through a 20-minute shower without feeling like I’m about to pass out.  If I can’t handle such a basic activity, there’s no way in the world I’m ready to live on my own.

Still in a towel and dripping wet I called my parents downstairs and told them my decision.  I think that secretly they were a bit relieved.  We had been planning for me to attend class 4 days a week and then have my parents come up and get me for 3 days a week so that they could take care of me, do my laundry, and make sure I had groceries for the week.  While it was a good idea in theory I think it would have been way too much to deal with in practice.  I cried a little and then we went into action crafting Plan B.  I met with my doctor and we agreed that the next phase of my recovery is physical therapy to recondition my body.  I feel like an obese person, easily out of breath with slight activity and exhausted by simple tasks.  My doctor is very well versed in the needs of chronic fatigue syndrome patients and is going to instruct my physical therapist to be extra gentle and work very slowly to build my strength.  I will meet with the physical therapist 3 times a week for an hour each time.  In addition, Clark is letting me do an independent study from home for course credit so I will have that to keep me busy.  If I am well enough to go back to school over the summer and next fall I will be a college graduate by this time next year.  

While I know that I made the right decision to stay home, I am not at all happy about it.  I haven’t started the physical therapy yet but I’m already resentful that I have to do it in the first place.  It just feels so undeserving.  And I know it’s going to kick my ass.  And more than that, it’s going to force me to confront my limitations.  Every time I get out of breath or dizzy I feel like this disease is bullying me.  I know I need to take control over my situation, and I am, but I can’t help but feel like a victim.  And to top it off I’ve been flaring up really badly this week.  I just want a break from all of this.  I want for one thing in my life to come easy.  But I should know by now, that’s not how it works.  


  1. It's just freakishly annoying, and amazing how much this hits home. I HATE taking showers. I know I have to, but boy do they wear me out! That's one of the things I hated the most, something that seems so basic, is a huge task. It's so nice to hear that I'm not alone. I keep telling myself I can't be sick, I have to go through college, I have to graduate on time, I have to do this or that. But thank you for being brave enough to listen to your body. For being brave enough to rest and really take care of yourself. Maybe I will learn something from you. I need to let myself be ok with not being perfect. Let myself be ok with the change. I believe there is this weird understanding that connects people who have to go through this, because no matter how much I say you don't understand, you do. Because you're living it to. And it is amazing to not be alone. I hope you have a relaxing break and physical therapy works wonders for you! :)

  2. OH Marah, I hear you, honey. I am not in college right now, and I do live with my husband and son in our own home, but my Mom is here again taking care of me and is thinking about selling or renting her house to be able to move in and be here for me daily while hubby is off at work. I did have some years when that wasn't necessary, and I hope you reach that for yourself too. Just take it easy on yourself and love yourself. You deserve lots and lots and lots of love. I'm sending you some just so you have extra.

    I know the feeling. I've been feeling like a victim myself, these past few weeks and I keep trying to fight it and be the brave warrior. The woman who can handle it and stick it out. But sometimes, well, sometimes I'm just a small little scared creature, or worn out and beat up little thing, tired of the fight and tired of hoping and wishing that it will be different for me some day. I understand that feeling and those thoughts.

    I guess this is the challenge of having to accept our limitations. To accept it when changes come our way. And we may not readily accept it face on... it might take a little while. A few days. A few weeks. A couple of months.

    Thank goodness for this little community we have here for support and understanding. It's okay to moan about it, cry about it, rage about it if we need to. We all have been there, Sweetie. I know how horribly bad you must want a break from it all. I was just telling my husband the day before yesterday that I just can't keep this up. I just can't keep going. It's ridiculous. I just want a day, just one day a week where I actually feel good. Just one. I completely understand. I wish I could do something for you

    Hang on, Marah. Just hang on. Thank goodness you have a loving and understanding family. Imagine how difficult this would be if you didn't have them. You are blessed (and I know you already know this) with them and they are blessed with you. Any opportunity you have and they have to love one another and be there for one another is a day worth living.

    Hugs and love and prayers of healing to you,

  3. Thank you both soooo much for your comments. It feels really good just to be understood.