Living with Multiple Sclerosis In 2017: What the Hell Do I Do Now?

 

Last year I explained that I don’t DO New Year’s resolutions but professed my intent to continue to be a “Strong Motherfucker.”  Overall I think I achieved that goal, but I still need to make changes to my life particularly because I am living with Multiple Sclerosis and have to accept that MS is simply a part of my life.  Even with a loving and supportive partner and improvements to my physical condition my life is far from perfect and truthfully, I feel guilty for saying that.  I have found happiness – shouldn’t that be enough?  And if it isn’t – what is it that is missing?

Having a purpose or a passion!!!!

Way back, years ago, when I had my first child and left my job at the bank to be a stay at home mom I had no idea what my future would hold.  I was blessed to do what I had always wanted.  Raise my own kids; be there with them and for them through the trials and tribulations of figuring out how to be great little people.  It was what I wanted to be doing – and I did it with great passion (and a bit of “inappropriateness” now and then.)

As the kids grew older and entered the world of school I continued to make them my priority; first volunteering at their preschools, then the elementary school they all attended and eventually as my oldest ventured off into the world of middle school-ness and I began my journey through divorce I secured a job with the school district as an aid and tutor.  It seemed an inevitable segue into the next chapter of my life – to continue to surround myself with children.  After all – they are simply amazing: honest, genuine and kind – not yet corrupted by all the bullshit the world has to offer.

BUT after completing the districts mandatory one year in an hourly position before being eligible for a full time, benefitted position it quickly became apparent that the volatility of securing a job as an aide (to work with students with special needs) would not bode well with my medical condition and need for on going and consistent medical insurance.  I came to learn that given chronic budget cuts and constraints, every year, there are numerous lay-offs; primarily in “disposable” positions (ie an aide.) The policy is “first in-first out” which would have more than likely meant that after my first year in the position, I would find out in June that I no longer had a job (or those “oh so valuable” benefits.)  Often times, those on the outs are rehired after the start of the new school year BUT that wouldn’t do anything to assuage the lack of medical coverage during the summer months and it wasn’t a guarantee that there would actually be a job come September.

For those reasons, I gave up my pursuit of becoming an aide and found a job with an internet/app company based here in Seattle.  It allowed me to work from home AND provided benefits – pretty ideal.  Except for the fact that I really had no interest in WHAT I was doing and WHAT the company did.  I found that I was in a job that I had NO passion for – simply going through the motions of working to earn $$ and receive medical insurance.  That is not to say that I didn’t work hard and give it my all.  But four years into it and it certainly wasn’t providing me with any joy or happiness.  So when it was announced that all US employees were being laid off by the foreign company that bought us out – I was over the moon!  I could never imagine quitting, leaving a job that provided a steady income and good benefits – but being laid off sounded alright to me.

As a result of this I was able to spend the past year getting my house ready to be put on the market, sold my house, moved and began to focus more on writing.  All of these add up to me saying with confidence that I succeeded in continuing to be Strong & Grateful.  But as I sit, trying to figure out what the hell I am going to say in my 2017 Happy New Year post I have realized something.  I am not sure WHAT THE FUCK I am supposed to do now.  Given that my mobility has improved and that I feel so much better on days that I actually get out of the house and interact with others – staying at home all day long while Shawn is at work and the kids are off at school does not seem to be working for me.  I love writing, I love connecting with others that are living with MS (and other chronic diseases) but it is very solitary and it is also a constant reminder that I have MS.  I know I am not likely to forget given the ever present and insane pain I am living with, but I am not sure that it is healthy to have IT (my MS) consuming all my thoughts.  I often feel as if I am wallowing in it.

I am not sure that I can manage a job on top of what I do here at the house and for the family and continue to write.  What if I get a job and the stress of adding something else to my plate brings on another flair up and I spiral backwards?  Even IF I do decide that I am going to give it a shot – what the hell am I going to do?  I go around and around in a vicious cycle of thinking about “what I WANT to do” “what I CAN do” and “what I SHOULD do.”  Some days I think I should just go for it and try and find another job around children – but then I get scared that I won’t be able to keep up (certainly NOT with little toddlers:) Then I think maybe I should look into getting my CNA (nurses assistant certification) and a job working with the elderly (after all I SHOULD be able to keep up with them) Other days, I think just a generic job (say at a local grocery store as a check out clerk) would fill my need to BE with people and interact, but without putting too much stress on me.  But would that provide me with the fulfillment I am feeling I am lacking right now?  Would it allow me to feel that I have a passion again?

As I explained to Shawn the other day – NEVER in a million years would I have thought that I would have a job that I didn’t like and my most recent employment experience has left me a bit jaded on returning to the workforce.  Maybe in the many years that I was “making good people” the work world has changed SO much that there isn’t a place or position that would be a good fit for me anymore?  I always assumed that once my kids were older I would then pursue a new career – whether it be in teaching, or some medical assistant field, return to working with “special needs” kids, or maybe even counseling.  Although the dream wasn’t specific, I never had a doubt that it would be somewhere that allowed me to help others.  But, I didn’t assume that I would get Multiple Sclerosis and take into account it’s role in my future and plans.

I am happier than I ever could have imagined with my personal life, with no fucking idea what it is I want to BE when I grow up.  I don’t feel as if I am helping anyone and that is leaving me feeling more than just a bit down and out.  I want to find something that provides me with that, but not knowing if I can handle it scares the shit out of me.  The logical side of my brain says that I would be able to do it (always have.)  But the cautious side returns to the “what if I can’t.”

Also add to the mix of unknowns – it doesn’t help that after decades of working his ASS off, all Shawn wants to do is get to retirement to then begin the next chapter of HIS life – and I’m not sure that I want to jump into a whole new thing and then not be around when he is finally able to sit back and enjoy life to it’s fullest.  Because I know myself, and if I finally do figure out what it is that I want to do – what I should be, I am going to give it my all and more than likely become fully embedded in it and succeeding at it.  IF that happens, I am not sure how easy it would be for me to step away from that – to feeling needed and having excitement and zeal about a career again, when Shawn is able to finally start living and playing more freely.

 

So -for this New Year’s message, I leave you with this…

I have NO IDEA what is in store for me in 2017!!!!

But isn’t that how it always is with this “fantastical” disease?  You just NEVER know – What tomorrow will bring, let alone a whole damn year.  But I can promise you that I’ll be sure to let you know just as soon as I figure it out.

All I know is that I REALLY DO HATE the unknown.

 

 

 

 

21 Replies to “Living with Multiple Sclerosis In 2017: What the Hell Do I Do Now?”

  1. Had my first MS symptoms in grade school. Doctor told me I was nuts! The sun burn effect, loss of feeling in hands..you know the routine. Moved out of state to attend college in Missouri. was a long 4 and a half years to get my bachelor’s degree in Computer Science. Met a guy my junior year there. We got married the day after I graduated.

    Our first year together landed in the emergency room because the room would not stop spinning. (Had not had any alcohol in my system) Basically all they gave me was an expensive form of Dramamine. They sent me to my regular doctor to find out the cause. Started visiting a chiropractor to help with my back aches. After about 2 years visiting him on a regular basis, he sent me for my first M.R.I. The results showed I either had Spinal Cancer or M.S. Wish it had been the cancer! Would have died by now! My husband and I have been together now over 20 years and many different states of the mid west and 7 glorious years in Colorado. Miss that state (great neighbors).

    First drug I was put on by a neurologist was Avonex. My body developed a tolerance to it and he had to try a different drug! Have been on Rebif, And a whole slew of others that I forget.

    Am permanently in a manual wheelchair now. When we first relocated to Minnesota, a neurologist put me on Cytoxin (the name having the word “toxin” in it should have sent off warning bells!) it made me sicker than a dog. Vomited so much on that drug I lost way too much weight. So I stopped using that neurologist. Started seeing my current neurologist in 2010. He put me on Tysarbi. Worked great! Only side effect I had was constant itching. Have been itching since! After about 2013 the effects of the drug started not lasting the full 28 days between infusions. Now I am lucky to retain my coordination for a week after my infusion.

    You are very right, there are no guarantees what tomorrow will be like with M.S.!

  2. Appreciate your candid sharing. Last year I had to leave my position as a registered nurse as the physical demands were becoming incompatible with my abilities. For me 2017 holds a retraining into the more administrative side of healthcare. I will not let MS take anything without a fight. Hold on to the future and new doors will open for you.

    1. Genevieve,

      Thanks for taking the time to read and share! And will absolutely WILL hold on to the future and look forward to new doors. Just don’t know what they will be:) I have NEVER been one to be patient:)

      Cheers,
      Meg (aka BBH)

  3. 😳 Wow! I am so going through something similar. After mikes where old enough I had always worked out side of the home and within our family business as well. After my diagnosis of #MS. My like Life stopped! The life I had known. My friends stopped coming over. Life has not been the same. Now, after 6 years of knowing I have this deaseae and reminders daily that I can not do what I use too, I am left with now what ??? Slowly slipping into depression, deeper and deeper as I struggle to fight back.

    I do know we can’t give up! It’s never too late to at lest try something. One day I hope things come together again.

  4. Oh Meg can I relate!!!! The last thing we all need is to stop trying though. I say trying because if one thing doesn’t work maybe the next will but when we stop or give up we’ve given in and that’s not good. Happy 2017…….and keep on posting please.

  5. Hi Meg,

    I have always been a planner, 5 years, then a 3 year one, then another 5….then I got MS! I am struggling to cope with not being able to plan, my last 5 year plan was interrupted at year 3… and here I am self employed Interior Designer with vision problems. Ironic!

    I am now trying to work day by day, its hard. I may not be able to continue my work, I may have to take someone on to help, its all change. But I am right with you on the staying at home thing. I am much worse when I am at home and dwelling on the past and how much confidence I had then does me no good.

    I think its an ongoing puzzle to deal with. Staying positive if the key x

  6. Hi I’m Michelle got dx in 1990 after youngest was born (he’s now a dr). I to wanted to be a stay at home mom with my kids. And thank God my husband had a great job and allowed me to do this. But once the last one went off to
    College I had a reality check. I was living for my kids and now what. I tried a bunch of different jobs. I was a realtor for 8 years and a nail tech. I love being around people. Tried retail but was to brutal for my health issues. Banking was boring! So now I work for myself. And I love it. I teach people how to live a healthier life. As best they can. I have a chronic illness that gets me down about every 6-8 weeks but I
    Pick myself up and get going. Temporary pitty party! And I’m loving my life!

  7. Hi I loved your piece! I like you do not have a job, and being at home throughout the day is BORING. I was never one of those people who watches TV, so I’m not about to do that either. Others won’t hire me because all they see is the chair, so I’ve decided to hire myself. Since I have an abundance of time on my hands, I thought of a few different ways to enhance the lives of people of living with a disability! Maybe you should consider something like that? I have a great passion for helping people, especially those with disabilities! Louise Sertsis

    1. Hi Louise!
      Thanks for taking the time and sharing your story. Yes, I have had a few ideas. Ultimately I would LOVE to keep writing and feel that I have made great strides in finding other outlets (paid) BUT it is the solitude that is driving me NUTS:) I will keep thinking (late at night I am SURE) and will let the world know what I come up with:)

      Cheers,
      Meg (aka BBH)

  8. I just discovered your blog last fall and I think I went back and read just about all the archives because I loved your humour, honesty and the way you write. You are right that no one really knows what our future holds. This disease took me by surprise last year (wow, now I can say “last year”) and never in a million years would I have seen myself where I am now…. Yes also trying to figure out where to go from here. Please keep writing and sharing your experiences. It is so appreciated!

    1. 🙂 Thanks Val! I needed that. Knowing that my ramblings may be helping others (even in small ways) DOES give me a sense of purpose and I definitely have a passion for writing (BIG time!) I have just realized that I NEED to figure out SOMETHING else that gets me out of the house. As I said, feel like I am wallowing and I am NOT a wallower. I am hoping that I can find some sort of balance:)
      Plus I realize that I need to get the HELL out of the house to have more experiences so that I can keep sharing:) Pretty sure “Sat on the couch with my laptop, next to the dogs” is NOT going to make for exciting stories:)

      1. really enjoyed reading your ramblings….I have been diagnosed for 23 + years…I too must keep moving and shaking or the wallowing gets me. I teach high school now, I love it! Summer’s are hard, I have gotten used to the routine and find myself ready to go back way before other teachers! I love the involvement with students, I also love the fact that I can and do schedule down days for the students when I need to not be ‘on’ all the time. High school students love what they believe is an impromptu game day, or movie…I have taught for 10 years now, so I have these built into my routines. Have you thought about getting teaching degree?

        1. Hi Carrie! Thanks so much for taking the time to read and share your story. YES! Teaching is certainly something I have thought about. Figure I could always then go to just subbing after Shawn retires to have balance of work and play. . One of the things on my list of ideas:)

  9. I am going through something similiar. It has always been my goal to work at something I love. When I have to do something I don’t like, I try to chew out of it like coyote ugly. I had a job I basically loved for over a decade. When things started to happen, I could work froom home. I worked in technology so most people didn’t even realize I wasn’t physically there. Now, along the wayI did lose some of the passion. So at the end of 2015 things fell apart. Time for new opportunities.NOT! I see positions that might be interesting and realize that due to my reduced mobility, I can’t. And when I gimp in, I don’t get the job. It’s also a vicious cycle because when I don’t walk, I lose walking ability. Right now, I am beginning to see that I can’t work in NYC that the commute won’t work. Just so frustrated and trying to figure out what to do for next steps

    1. Thanks so much for sharing! I have long ago learned that it definitely helps to know that I am NOT alone – no matter what it is I am going through there always seems to be other’s with similar stories. Would love for you to keep in touch and let me know if/when you figure something out:)

      Cheers!
      Meg (aka BBH)

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