Moving Forward

For the first time in the past nine months I can finally say with honesty that I am at peace.  I am at peace with myself, as I am.  At my core I know that everything is going to work out.  My perspective has shifted and I am able to frame my situation in a more hopeful way.  Like, for example, having to take medical leave from school for a year.  At first, making that decision felt like a huge, defining event that would somehow alter the course of my life.  I would be distanced from my friends both physically and emotionally while they complete their schooling and I feared that I would somehow get left behind.  Now, I realize that in the scheme of things, one year out of an entire lifetime isn’t such a big deal.  And the fact that I’m not in school right now does not mean that I am not moving forward with my life and learning new things everyday.  Actually, I think that this year has taught me more about life and myself than a year of school ever could. Having experienced total loss of control and becoming completely dependent on the help of others, I know that no matter what happens I have the supports that I need to survive. The fear that used to weigh me down everyday is gone.  I’m finally living in the present, taking each day as it comes, and accepting my illness for what it is.  I have a strong sense of my limits and when to say no, but I can also begin to start expanding those boundaries a bit.

I guess you could say that I have come to terms with my illness.  It’s a part of me, but it doesn’t define me.  And I’m no longer at war with it.  I’ve accepted that it is here to stay and I am designing my life in a way that accommodates my needs.  I don’t feel such an intense frustration when I flare up and have to cancel plans or I am stuck in bed for periods of time, I just kind of go with it knowing that it won’t always be this bad.  For months people would ask me “when are you coming back to school?” or “how are you doing?” and I would always reassure them, I’ll come through this and I’ll come back to school.  While I made this claim to the world, I didn’t totally believe it.  I needed to say it for myself in part because I was probably a bit in denial, partly because I didn’t want people to give up on me and lose hope, and partly because there was a small sliver of a piece of me that did believe I would improve.  My mantra was “it won’t always be like this” and after saying and thinking it enough times, I have actually come to believe it. 

And I have improved!  I started this blog last October but before that I was too sick to do it.  I was either sleeping or too dizzy to see straight, and I was fainting several times a day.  Now, I am able to write, read, walk, and sometimes even drive.  The fainting has been replaced by manageable light-headedness and my focus has returned.  I have a blog with readers who give me a voice and validate my feelings (please leave me a comment and let me know who you are!  I would love to get to know more of you!).  I manage to get out of the house at least once a week and I can handle being in crowds and doing some gentle activities.  I even recently joined an online dating site (long story)!  I am filled with hope for the future and am motivated to continue improving.  This is only the beginning. 

Ch-Ch-Ch-Changes

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.  

What Goes Down, Must Come Back Up

Lately, I’ve been doing a lot of reflection on my life and its most recent events.  Looking back, this has been a year of great loss.  I have lost many of my abilities due to my health issues, and as a result, I have lost my sense of confidence and direction in life.  At the beginning of this year, I was dealing with chronic fatigue syndrome and fibromyalgia but it was very manageable and did not stop me from being in school, having a boyfriend, and keeping up with my friends.  Now, I am at home where I only have one friend, have been dumped, and have the hobbies and activity level of someone in their 70’s rather than someone in their 20’s.  I sleep the majority of the day, knit, and have even taken up watching Jeopardy and Wheel of Fortune every night with my parents.  In addition, I have had two very traumatic trips to the hospital due to fainting spells.  I’m hoping to go back to school for next semester but nothing with me is ever certain.  So where do I go from here?

Well, what I’ve concluded is that the only direction is up.  I have been thoroughly cast scanned and MRIed (yes, these are verbs in my book) and it has been concluded by several members of the medical community that I am not dying.  This fact alone eliminates any further surprises.  Other than that, I know for certain that my friends (though they may be long distance) and my family aren’t going anywhere.  While I don’t do much every day and I don’t have much of a direction, I’ve learned to believe this is only temporary.  And as far as my health is concerned, I have a new doctor and am going to defer to his suggestions.  All I can do in the meantime is focus on minimizing my anxiety and stress level.  I can’t predict the future and trying to only leads to fear. 

I guess what I’m really trying to say is that I need to live in the present and take each day as it comes.  When I feel sad, I will let myself feel sad.  When I feel tired, I will sleep.  And when I am in pain, well … they actually make pills for that!  And while at times this seems like a pretty pointless existence, it is only a temporary state. Though gradual, I do see improvements in my health and I know from past experience that my illnesses tend to peak and plateau.  If nothing else, I am living to see this thing through and find out what the future holds.  I do believe that there must be some purpose to all this suffering and that whatever/whoever is out there (g-d or whatever you believe in) isn’t just being cruel and making an example out of me for no reason.  I might hold the key to some answers or at least be able to guide someone else through a similar experience someday, who knows?

Questions to Consider:

What keeps you sane?

How do you deal with times when you are homebound?

How do you confront loss?