I have not been keeping up with the blog. Not because it isn’t important or I don’t think about it but because like so many others I just don’t have enough time, energy or “spoons” to get through most days. Bringing me to today
On this day I turn 36 years old and yesterday I had to renew my driver’s license. The lady hands it to me and despite the optimism I feel (most days) when she said you will need to renew again in 2020 I heard myself say (to myself) if I am still here. I hate that being sick makes that a part of every day.
I have been a college student online for a couple of years now and even on my own time with this illness it has been a CHALLENGE to say the least. Of course I have only recently been diagnosed with Cushing’s before that it was a lot of other things the doctors “thought” it was. The symptoms no matter what it is called are wide spread throughout the body and it often feels like how I will feel moment to moment is about as certain as a roulette wheel. The same is true for the question of if I will be able to regain my health. That leaves me constantly wondering how to live my life.
A few years ago I got married, had great kids, enrolled in college for a 4 year degree and was drafting my business plan with my husband for after graduation. Those dreams though have felt increasing more like water and the more I try to hold on to them the more they seem to slip through my fingers. Stress is not a friend of mine since the illness has set in…like most people when I faced a deadline in the past it meant that I pushed through and got it done. Having this illness means that my body is always in that state already so when I need to go “into this state” my body shuts down and I am unable to function properly...if I was even functioning to begin with.
I have tried to explain to my friends and family that being ill not only makes me feel awful all the time but it leaves me feeling lost without direction. It has taken the certainty and determined self guidance away from me that I have always had. I no longer know what to do or what to be planning for or how I should be living.Should I live like this is my last years on earth and try to spend time with family and friends and get through the bucket list?
If I do that am I admitting defeat and am being negative about the outcome of my health?
Should I continue with my business plan, college and networking as strong as I can even if it makes me feel awful when I do have free time?
If I do that am I living in denial and not facing the reality of my illness?
Does that mean I may be wasting the time I have on trying to get somewhere I will never reach and sacrificing other dreams and time with my family for no reason?
I am so confused about what is the right thing to do and I know that the right thing is what is right for me but WHAT IS THAT? I know that every time I turn an assignment into school I wonder if I will ever be able to use the degree I am working to acquire. I know that If Stephen Hawking can live his life the way he does... I can think I can run a business. Right? My field is not like his and I won’t be changing the world so I don’t think a bank is going to support a business loan and a plan around a sick person who has a great idea she may never be able to carry out. So does that leave me getting a job in my field not without a treatment and remission I can barely pass courses online (in my own time) there is no way I could meet the demands of a job (any job right now) in my field especially.
I know that I try not to pass up the good things I could do with my kids, do the best I can to go on like things are still “normal” and my future is still on the course I have set. I just can’t help the fact that the questions are ever present... if I am heading in the right direction or if I am living in denial or reality…if I am living with optimism or pessimism and where to draw the line with both. How do I find a balance between being sick and still living? Is there a balance that will still allow progress in both my personal and professional life on this road back to healthy? Will I ever be healthy again?
Happy Birthday to me.
Ps. I bet you can figure out my wish.