Life thus far after MS diagnosis….
Adjusting to a major diagnosis always comes with it trials, and over the past few weeks I have had my share as well as my victories. After finding out I have most likely been with MS for about 7 years, I began to compare my life over the last 7 years to now. Doubt arose as to whether I will be able to pursue my dreams, how much would I have to sacrifice and change my life to accommodate my disease? What is going to happen with my body, mind and spirit? How can I manage my life?
I realized that allot of these thoughts have been very defeating in nature. Yes MS is a disease, it can be very life changing and progressive in nature. Yes I am in a position where I have to make many changes in how I go about my daily life. Yet there are lessons and growth potential each day.
For instance I have always been a go go go type of person, never slowing down and rushing through to get a lot accomplished in a short amount of time. I found that I was more likely to make simple mistakes and overlook important details in life. Now, I have to make an effort to slow down to conserve my energy. It allows for me to take me time pay more attention to detail and enjoy simple things in life. Like to beauty of winter in the north, the changing of the season and to look inward and take my time with personal relationships.
My daily activities begin with waking early in the AM and taking a few minutes to myself to gather my thoughts for the day ahead. Preparing the kids lunches and spending time with them in the morning talking about their day ahead. A small interaction that I didn’t really take advantage of before my diagnosis. I gather my meds for the day and prepare my daily injection that I have now involved the children in so that they have more knowledge of the disease and with knowledge fear goes away. They see that I am confidently fighting my disease and see the reality with confidence rather with a veil of uncertainly. I also plan to have a nurse from the manufacture come and education them on how to administer the shots so that they can help me on days where it will be difficult for me to do myself.
Balancing work, life and fun has been a challenge.
As with my work, right now I sit in front of a desk and work on a computer but with the course the MS has taken in my right hand I have found this to be challenging. Using a mouse can be painful at times in my hand as well and typing. I do have reduced hours right now but found that I still need to take frequent breaks. However my job does not take kindly to frequent breaks as well as leaving early on bad days where I am not able to finish due to pain. The stress then does begin to mount up on fear of keeping my job, the job that I maintain my insurance through that pays for my medical bills and medications that I need to help manage MS. I have found that communication with my supervisors as to what is happening with my MS as well educating them about the disease. The more they understand what MS is and the steps that are needed to be taken to manage the symptoms, the better the understanding is and less stress. It allows for a partnership in the workplace and forms another support systems that is much needed in the world of MS.
Life is the hardest to manage with MS.
The children have been the easiest so far to understand and incorporate in the daily routine in MS, surprisingly. However, I have a father who is disabled and is the reason I moved from Florida to the Midwest to help. He has been the hardest to incorporate b/c the way he manages his disability is different than the way that I manage mine. I use routine and planning, he just flies by the seat of his pants and has had the hardest time accepting that his little girl has a disease that is potentially debilitating. And the old adage can’t teach an old dog new tricks definitely applies here. Last minute requests for a ride to the grocery store, failure to notify of a doctor’s appointment that week and lack of general planning that interferes with the schedule that I have set forth for the week. Ends up resulting in no down time and worse no time taken for myself because I am having to scramble to find ways to allow for the new additions in the weekly schedule that I inadvertently end of overdoing it and become fatigued.
Fun and personal relationships and MS.
A lesson I didn’t need to be taught was to have fun. The problem here is that after giving my time to my family, work and others who need some of my time I have little time for myself and to have fun. I have a really bad habit of being there for everyone and not for myself. I give give give but rarely take any for myself. I hate to make this sound like the OCD over planning type of person but I found that I had to block out time on my calendar as “busy” where there are not doctor appointments or physical therapy to remind myself that I am busy during that time taking care of me. I can chose to do whatever I want during this time but this reminds me that I can say no to others who are requesting my time. That it is important to take time for myself. How can I be any good to my family, friends or job if I am not good to myself? To help reduce the damage to my body that MS can cause I have to reduce stress, relax, rest and take time for myself.
Celebrate the victories no matter how small….
MS has it good and bad days, I have found that the good days are fantastic and that I am happy when I have them. Even bad days has its victories, it gives me time to slow down, listen to my body and to enjoy simple things like reading a book or playing games on the computer. I have also taken advantage of good days to do hair. As I am a hair dresser by trade, although taking a break due to MS, I still enjoy doing hair. So when I am having a good day I share that good day by making someone else feel good by doing their hair.
Educate educate educate…..
Every day I try to learn something new about MS. I read everything I can find, because again knowledge is power. I then take that information and share it with my family so they are well educated as well to keep the fear at bay of the unknown. Fear is an enemy that can cause stress and unpredictable emotional responses and breakdowns in communications. It’s important to use knowledge as a weapon against fear and it opens the lines of communication with loved ones. MS is not the enemy I am fighting, it fear of the unknown and uncharted waters. Knowledge is the weapon I choose to fight my enemy fear.
I am dreaming of a world I want to live in, and I am dreaming out loud!
