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667078 tn?1316000935

The Process of Accepting Illness

    Going through the diagnosis process was hard on me. I did not go into the doctor with symptoms. I had had symptoms since childhood so I did not know they were symptoms. My parents had taken me to many neurologist but they never explained why. My GP did a neurological exam and said I needed to see a neurologist, I did not really know why I was going. long story short 6 neurologists, lots of tests, and two years later I was diagnosed with MS.

     Limbo was hard. I felt confused. I was scared to death of MS. I read things on the internet and was sure all these bad things would happen to me. I had two women in my life growing up who were bedridden due to MS. I was also feeling dismissed. Why could they just diagnose me. They kept saying I would be diagnosed in the future.

     After my lumbar puncture I was diagnosed. I was relieved I had a diagnosis. I did have this idea that once I was diagnosed I would have a team of health professionals ready to solve all my symptoms. That did not happen I then started seeing the doctor once a year.I felt very alone after diagnosis. My husband did not want much to do with MS. I also felt angry at having the disease. I was angry at myself for costing our family more money in medical bills along with working less.

      I was sad. I had had a rough childhood and thought the second half of my life would be better.My parents punished me for being sick. They saw it as weakness. I had paid my dues, Hadn't I? I became as depressed as any human could be. I went to a therapist and was already going to a Psychiatrist. I had been going to him because I was diagnosed as bipolar before the MS diagnosis. Before I was diagnosed with MS he said you have something neurologically wrong you are not crazy. He said I will be with you until we figure it out. I did start on medication for sleep. This was 2009 when I was diagnosed.

    I stayed depressed for two years after diagnosis. I continued seeing the therapist. It was expensive but cheaper than a hospitalization. I did a year on Copaxone then they figured I had Primary Progressive MS and that I had had it since the age of two. They looked at my childhood records.. I stopped the Copaxone because of the Primary Progressive and having MS so long. Some people stay on the DMDs and that is good. My mood still went all over the place. It is about acceptance. The more I accepted the disease the happier I was. I also started volunteering with the MS Society. I felt better about myself. Up to now no one had addressed my symptoms. Then I started onmuscle relaxants and medication for nerve pain. A year later I started with a pain clinic.

     In 2010 I started being sick all the time. I started throwing up and losing weight. A year later I started having severe pain in my diaphragm. After ruling out the heart they all said it was MS. I even ended up in the ER for vomiting. Then in May 2012 I went to my GP and said something bad is going on. Then they found the cancer. I have had cancer since at least 2009.

     Again I felt angry they took so long to find the cancer. I felt angry at having a rotten childhood, MS they did not catch for over 40 years, and then a deadly form of cancer. I was also sad and depressed.

     It is over two years out. Like the MS I have accepted it. I am happier than I have ever been. Luckily the chemo works on MS. The days I live in the moment and accept what is going on I am pretty happy.

     If you feel angry, frustrated, sad, or depressed do not beat yourself up. Life beats you up enough. Limbo can be the hardest places to be. We all want to be validated. Told that whatever we are going through is real. To not have people rolling there eyes at us or accusing us of being lazy. Probably the best thing that happened was having my husband accepting my illness. He just wanted it to go away. He did not like my crutches, canes, or me talking about illness. Now he is proud of me.

    It is hard but being grateful is important. I also realize there are people worse off than me. People with MS or cancer who are sicker than me. Breathing and living in the moment helps. Also having faith. I bucket list is also important. I have been up in a hot air balloon, I started riding horses, I adopted a dalmatian puppy, and trips. For me looking to the future is important. Also not putting things off.

     If you look at me don't say I can't complain look at her. Your pain and issues are just as valid as mine. I am not here to have a contest. I only want to say I have had my process. It usually takes me two years to truly accept new challenges. Life is what you make it. Don't deny your feelings. Every moment is not bad.

Alex

  
14 Responses
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382218 tn?1341181487
Alex, I think your post will help more people than you'll ever know.
Helpful - 0
1168718 tn?1464983535
Wow, Alex, that was a powerful posting.  You know how I feel about you,and how you shine, even in the middle of the storms/ hurricanes, tornadoes, and gale force winds.  ... it has been a lot, and you are an inspiration for us all.

I only wish I could get up and do something like you.  I wish for my son to accept my dx and come back to the family.  

I know about the talking about the MS, and how if effects each of our lives, every moment of the day, and even lots of night hours too.  When people say, " ooh for heaven's sake, just get over it" well,  that is when I think of you, and your comment about having people worse off than you, and I sure have seen that in my life, people who have now left this earth, and when I walked out of the Hospice, I took a deep breath and realized just how "lucky" I actually am.

So, I get it, in Canada, we have a psychiatrist at the MS clinic in one of our major hospitals , so when you go there to see the Neuro's, you have to see the "shrink" , and I actually love it, as so many things have been going on in my life that isn't just my health, it is so nice to have someone to bounce stuff off to.

Good luck, and chin up, we are all here for you,

Candy
Helpful - 0
Avatar universal
I really needed to read this. I haven't really dealt with it. I'm sitting here bawling just reading this. I've gained 40 lbs, that's how I've dealt with it, obviously. None of my family or friends want to hear about it. Anytime I bring up a pain or sensation that is out of the ordinary, I get eye rolls or change of subject, or a "yeah! I have that too sometimes!" I don't know why, but that is so frustrating to me. So I shut up and eat. I probably should see a psychiatrist.
Helpful - 0
5784787 tn?1394602077
I guess I am one of the :lucky"ones I was diagnosed very quickly and aside from severe fatigue have been very lucky......hold onto last comment i went into a relapse and i ended up in emerg, i can't explain the pain other than i think my left leg is giving birth, i seem to have the worst most paifull contractions every two minutes.After the emerg visit they did give me some pills that offer comfort and hopefully have enough of them to cover this relapse, your write up was good, once in a while we needto be reminded we are not alone
Helpful - 0
Avatar universal
I thank you, too, Alex. Thank you for being here... I believe(know) that there are others you are helping that you will never hear or see.

You have had an amazing journey and it sounds like you are keeping it amazing. An *active bucket list!
Helpful - 0
572651 tn?1530999357
As always, thank you Alex for sharing your story, your emotions and your reality with us.  I especially like that you have tried to emphasize a point that shadowsister DJ always tells me - our experiences with MS are different than the next person and they also need to be validated.  Just because someone else appears to have so much worse going on, doesn't lessen our own reality of troubles living with a chronic disease.  We may not be traveling on the same path but we are at least on parallel journeys.

Alex, Continue to stay in the moment and keep reminding all of us how good life can be if we stop letting the obstacles in our thinking keep it otherwise.

hugs, Laura
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Avatar universal
HI Alex,
Thank you for sharing with us. I too get  a lot of strength from your posts. You are an amazing woman.
HUGS, barb
Helpful - 0
9745005 tn?1410044366
And you are helping some of the rest of us become less of a mess than we already feel, so thank you!

Karen
Helpful - 0
667078 tn?1316000935
This forum is the main reason I am doing well. I was a mess when I joined.

Alex
Helpful - 0
Avatar universal
You have put it into perspective, Alex, very well.  I might add that Elisabeth Kubler-Ross mentioned that they do not have to appear in order, and can return.  I, for one, often go thru denial, especially when I've had a good 6 months run of no problems.  I look at my "wad" of pills (I being one who didn't want to take pills) and feeling great, wonder why I am taking them, why can't I just put them up until I need them, and my medical background tells me, they probably help me stay this way.

I have the hardest time explaining the waxing and waning of my symptoms to friends and family, who still don't understand it.  When I am well, they think I am on the way to "cured".  Alex is my hero, when I am feeling sorry for myself, I think back to all the personal and emotional thoughts she has shared with us over the years and know that my life could be much, much worse.

Her plate is full and yet she is such a graceful lady and living life to the fullest.  When I have questions and am struggling with dog training, she is always there for me.  

She is an angel who walks among us, providing inspiration.  And yes, we have a wonderful group of well versed people here who help others with their new diagnosis and offering suggestions on how we each handle it.  

Helpful - 0
Avatar universal
Thanks Alex
Helpful - 0
1831849 tn?1383228392
Alex touches on a very important part of the MS experience, the emotional part. For many, hearing that we have an incurable disease attacking our central nervous system is overwhelming.

One way to approach the news is to ewquate it to the grieving process following the loss of a loved one. Elisabeth Kubler-Ross defined 5 stages of the grieving process (https://www.hdsa.org/images/content/1/3/13080.pdf).

I saw a therapist for a year after I was diagnosed. We worked through the stages and I emerged in a much better state, both in terms of my disease and my life in general.

Nothing (yet) is going to make my MS go away, but I have been able to put it in the proper emotional place :-)

Kyle
Helpful - 0
667078 tn?1316000935
You are one of my favorites Wobbly
Alex
Helpful - 0
293157 tn?1285873439
Wow, that is just what I needed to hear.  I'm sorry your going through so much, you are a strong person and I can say your an inspiration to all of us.

Hugs
Wobbly
Helpful - 0
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