Search Discussions

Main Content

  • janette-ayub
    I'm glad that I have this site because I don't know what I would do. Battling this unknown for over a decade at times the depression just gets worse. At the point when this got really bad I lost everything. I lost my job. I lost my boyfriend. I lost my mind. I'm still trying to recover financially and of course these tests don't help. Yet, it isn't the unknown that is getting me anymore. It's just my mind. 

    I'm not sure if everyone feels this way- completely lost. Not sure if it's just the trials of life but I have never been so lost before in my life. While humor and daily activities do help, this is the part that I hide that no one knows about. I don't want anyone to feel sorry for me when I start to ramble on about this, or to look at my thoughts as invalid because "maybe there's something wrong," or the worse response, "that's life, get over it." 

    I know there's so much more to life and that's why I count my blessings daily, but I'd be a liar if I didn't say that sometimes I just get really down. I wish I could focus. I wish I could stop thinking.

    Then again, maybe I'm right where I'm supposed to be.
    Life thoughts.

    Thank you for letting me rant.

  • connief59
    Prayers for you Janette.  It is a lonely disease but we are here. Make a list of what you want in life. We may be sick but we can still have dreams and goals to work towards. You are young and have so much to look forward to in life. Keep looking forward. You've got this!  
  • janette-ayub
    Thank you Connie! I just made a list right now and it's a good feeling to see this all on paper. Kepp looking forward as well, we all got this.
  • maria1
    Hello Janette, Change is very difficult, for all of us, that is why the status quo prevails. And when routines are broken we lose the strands that hold everything together. Losing a job and losing a partner are big changes, along with ms. It takes time for the subconscious to adapt. Hug yourself , be good to yourself and know that you are in a place of healing, one day you will wake and know that the worst is over. maria
  • janette-ayub
    Thank you Maria, your words mean a lot. I hugged myself then bought ice-cream so I am in the healing process. lol
  • lynettepowers
    So sorry you are going through a rough patch right now.  I go through cycles where I get pretty down.  I try to remind myself that there are many, many people out there going through much worse than I am, but you still have to mourn your losses. And then pick youself up and continue to look for new advances and alternative therapies. I have been diagnosed for 16 years.  I took a medical retirement 6 years ago, and I am still sad about that because I really did enjoy my job (I was a high school Home Ec teacher), but I haven't had a flare since.  Gues my job was a little bit stressful? I retired the year my oldest graduated (she just got her teaching degree this past April) and my youngest graduated the following year.  I was pretty functional at the beginning, but I have gone slowly downhill. I have been on a big anti-drug path, because the side effects were worse than the initial disease.  I felt like I was losing myself. I feel so much better when I am not on anything.  Last September, I let my Neurologist talk me into trying Gilenya. At the time, I was walking on my treadmill for 10 minutes a day, stetching, exercising, and eating really well.  In two weeks time I could no longer get on the treadmill, I had to start using a shower seat, I couldn't roll over in bed or readjust myself on the couch, and I went from needing a cane when I left the house to using my walker all the time, even in the house, and I have to use a wheelchair when I have to go any distance at all. I only took it for four months and glad that it didn't cause me to have an exacerbation, but I want my life back!

     Now I just need for my body to heal from all the insults that have been done to it. I have started going to a different type of chiropractor (she is doing cold laser therapy on me to stimulate my stem cells), I am meeting with a company called Bioness on Thursday to see if they can help me get my walking back, and I am going to the Cleveland Clinic on Saturday to see if there is anything new on the horizon that I can be a part of.

    And I try to watch Ellen Degeneres every day. And I am always thankful for my family.  It has taken a long time for my husband to come to terms with the fact that I can't do the things I used to do (I was a very independent woman), but he is getting better about being helpful.  Since I started on the Gilenya he quit coaching middle school basketball so he could cook dinner when he gets home from work (he is a teacher, too), he is doing his own laundry, and he is doing more of the cleaning. He also is having to do all of the yardwork.  I used to be in charge of all the flower beds.  It was one of my favorite hobbies.  We have a very large yard (14.4 acres) and my flower beds are a wreck!  And then that makes me very sad.  Did I say I want my life back?  

    Here's hoping and praying that they come up with something soon to help all of us with MS and every other disease out there! 

    It makes me happy that our names rhyme :-)
  • lynettepowers
    Oh my.  I just re-read this. Sorry about all of the misspellings. I have difficulty with my left hand, so my typing abilities have gotten a bit messy!