MS brought me Home Instead of...

MS Brought Me Home Instead of…

“This is not a great way to start the new year.”
This text was the cold response received after advising my employer I’d be unable to return after the Christmas holiday break due to suffering one of the most painful MS exacerbations since I was diagnosed approximately 3 years prior.

How it all began

Randomly, early one morning in November 2001 it all began. A plethora of symptoms over a number of years such as weakness, pain, fatigue, random bouts of incontinence, heat intolerance, numbness, tingling, and more. The problem wouldn’t be determined until July 13, 2007…when I was diagnosed with Multiple Sclerosis.

Happily employed

At the time of diagnosis, I’d been happily employed for nearly three years as an Admissions Receptionist/Secretary. My Executive Director and entire department were very supportive after my diagnosis as I dealt with my condition and its effects. After five years, I applied for an advanced position in a different department and received the promotion. I was proud of my achievement and excitedly became the Administrative Secretary to the Dean. Unfortunately, MS may remit for a while, but it never goes away. After a while, I found that the new department wasn’t as supportive as my previous; however, I loved my position and excelled at it so that made it bearable for me….until that last exacerbation.

An exacerbation changed everything

I maintained as well as possible although MS and my superior ‘fought’ me every step of the way. The doctor, my children, family and friends watched me suffer emotionally and physically and strongly encouraged me to consider disability in order to preserve my health, wellbeing and quality of life. I absolutely hated to relent to this horribly selfish disease, but on October 21, 2013, I went to work in so much pain so as not to give ‘ammunition’ for further strife. My Occupational Therapist asked me ‘when is enough enough?’ When I left at the end of the day, I never returned. My neurologist and staff were ecstatic when I called the next morning and advised them to submit the disability paperwork.

I wanted to work

I wanted to work. Hence, I did not share their excitement. Though, I must confess.. The first morning of not feeling like I’d already worked a full eight hours plus overtime – before even leaving my home? Divine!

At a follow up appointment with my Neurologist, he mentioned that I may qualify for assistance in areas of personal and home care to make some things easier for me. My insurance confirmed it: I qualified for caregiver services. I was reluctant. I’m not a Senior yet!!

Choosing a home care agency

After several calls and a bit of research, ironically, I selected an agency entitled Home Instead. The irony in the name was the correlation with my personal situation: Having to be Home Instead of work.

At any rate, in order to avoid bitterness and unhappiness, I weighed Multiple Sclerosis/being home in a pros and cons manner.

Cons: MS brought me Home Instead of…

Letting me remain in the workforce
Giving me a choice
Letting me be me

Pros: How being home has added positives to life

Being Home Instead of working has added many positives to my life such as people that I may have not otherwise met if on a different trajectory. (“Sometimes people come into your life for a moment, a day, or a lifetime. It matters not the time they spent with you, but how they impacted your life in that time”). The energy that the assistance saves me is insurmountable.

The best aides are like compassionate friends

As for me and my vibrant, 47-years-young self, the best aides are more like compassionate friends simply being helpful while visiting socially anyway. Perceiving their presence as companionship makes me feel more comfortable. Some are naturals, and Home Instead has truly provided me several memorable CAREgivers that are/have been assets to me and my home.

If for nothing else, I can thank MS for enlightening my life with new, interesting, helpful, and kind people in my life through (being) Home Instead (of working)!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (38)
  • nurseogden
    1 month ago

    I am just wondering how you can afford home instead if you are still able to get out and about and are not working. I am 61 and on disability for 8 years and don’t seem to qualify for any help with things that are difficult for me such as cleaning and meal preparation etc. I am able to get out of house and do some things so I am not completely homebound.

  • Dianne Scott author
    1 month ago

    Hello @nurseogden ,
    I am not a self pay client and fortunately have an insurance which pays for my home health needs. Also, I’m unsure as to what gave you the impression I am out and about … unfortunately that is a ship that sailed some time ago. Even when working, I relied on my son to take me and pick me up as driving added way too much to my plate after preparing for ànd working the full day.
    I’m not completely homebound as I can go out sometimes with assistance.. My times are generally iin the home other than a dr’s visit or an occasional personal outting.
    At any rate, resources such as your local MS Society or the MS Foundation can be assistive to helping you in this area. Thanks for reading.. Take care!

    Wishing you the best,
    Dianne ♡

  • giraffe516
    1 month ago

    While I love working. There are times I wish I didn’t have to. I could devote time to physical therapy and exercise. Enjoy the home I’ve worked so hard for. Unfortunately I work 6 days a week, devoting 14 hrs a day to getting ready for work driving to and from work along with an 8 hr day. Upon arrival home I care for my home and pets. Amazing how you can survive on 4 to 5 hrs sleep. There are still bills to pay and I need the insurance work brings. While I waited for disability to be approved we would become homeless. Do I persevere. Walk with 2 canes do what i have to!

  • Dianne Scott author
    1 month ago

    Hello @giraffe516,

    I had financial concerns regarding retiring early, but enjoyed my job and what I did and didn’t want to feel like it was being taken from me. I learned to appreciate retirement for many of the reasons you stated. Thanks for reading and sharing with us your perception!

    Hang in there, my friend!
    Dianne ♡

  • CKristian
    1 month ago

    I have had MS for 20 years. I have had increasing disability resulting in inability to walk more than a few yards. I also have swallowing, speech difficulties, bowel and bladder problems. I had to stop working as a paralegal due to extreme fatigue and weakness. Severe pain and parathesias are along symptoms.
    Due to the FDA’s meltdown over opioids, I am unable to get adequate pain control.
    I also suffer from generalized dystonia, which is akin to a free trip to hell.
    About 4 weeks ago, I began having internal tremors all over my body. In a couple of weeks the internal tremors become large visible tremors and trembling. I don’t have a solution for this.
    MS can be a horrific, progressive disease, even with modern immunosuppressive drugs.
    I want people to understand that even if you are being treated, you may not look like the pictures of happy active people running, hiking, biking etc., that you see in the MS magazines and advertisements.

  • Dianne Scott author
    1 month ago

    Greetings @ckristian

    I hate that you have to live with those symptoms, I hate that the symptoms even exist, I hate that even MS exists. I can also identify with the frustration and even said this that those of us living with so many challenges feel when looking at the commercials and pictures of alleged diagnosees of MS living incredibly healthy physical lives and able to participate in such fun physical activities.

    I can find, however, some positivity in your response. Not only were you able to successfully convey your feelings in a clear, cognitively sound heartfelt manner … You are still here which means that you are a fighter. Kdos to you and keep up the good work!
    Best wishes,
    Dianne ♡

  • Dianne Scott author
    1 month ago

    Hello again, @ckristian
    That really is alot to handle and I totally agree. Positivity is good tho we are only human so it’s expected that every day, every minute won’t be filled with sunshine – and that’s ok. My encouragement is just not to allow ourselves to wallow for too long in dark places because our mental state can have effects on our health.
    At any rate, I am even more proud of you for marching on after hearing about the other health challenges. Keep up the good work and stay in the fight!

    Dianne ♡

  • CKristian
    1 month ago

    Thank you Dianne
    I have to also mention that I also have multiple autoimmune diseases, which is more common than people know. I have had Lupus since I was 11 yrs. old I was also born with cerebral palsy and the usual problems that accompany it.
    All these diseases have resulted in multiple organ failure and extreme pain.
    Although I had a very successful career in many endeavors, I now struggle daily with sadness and loss. Sometimes folks mean well by sending others messages of positivity, but at times I feel guilty for the lack of it.
    This is not to say anyone should stop being positive, but I also want people to give themselves permission to feel otherwise.

  • Flash1959
    1 month ago

    Reading your story I saw me.
    I was diagnosed with MS in 1992. I was 32. Still vibrate, active, husband, and father. I was achieving goals I set for myself. MS was more like a bump in the road. Fast forward MS seized my life. In Oct. 2013 I had to stop work and go on disability. I too was struggling at work. I could barley complete a 4 hour work day. Looking back I should have made the decision 2 yrs. before I finally took the advise from my Neurologist. Thank you, for sharing your story, it touched me in a special way.

  • Dianne Scott author
    1 month ago

    Hi @flash1959 ,

    I am so very happy that you found in appreciation in my article. I love when we can identify with one another.

    Thanks for reading and sharing your story as well!

    Warmly,
    Dianne♡

  • christophrighter
    1 month ago

    I also vibrate. Sometimes I feel like one of those wind-up toys that vibrate across the floor when I’m fixing my daughter’s lunches or fixing dinner, etc. I have not been diagnosed with MS but, I’m still looking for answers. I haven’t been able to find anything that had to do with vibrating nerves and MS. Thank you for your post as it has given me another answer in my search.

  • Dianne Scott author
    1 month ago

    @christophrighter
    Incidentally, approximately three to four weeks ago, I began the same type of internal vibration, tremor that you have described. I learned from my Ms specialist that it is a a result of damaged nerves. I wish you the best of luck in your correct diagnosis journey got that. It took me about six years for one.
    Thank you for reading my article and taking the time to leave a comment. Hang in there, my friend!
    Best,
    Dianne♡

  • purple71
    1 month ago

    Dianne, happy things are working out for you, I’m also 47 and have continued to work full time, despite all the symptoms as well, it’s really tough, I was diagnosed in 2010, I’m considering applying for disability but what to do in the meantime until it gets approved, can’t live with no income, bills are still due, and then the insurance… I was hoping to work another until I’m eligible to retire in 4 years but that seems more and more difficult.
    Thanks for sharing your story
    Aurora

  • Dianne Scott author
    1 month ago

    Hi Aurora ( @purple71 )

    I understand that it is difficult living with the Perils of Ms and working full-time. As my article indicates, I was worried about finances while on disability as well, but learned that my job offered short and long term disability which filled in the gap until SSDI was approved. Perhaps your HR department could offer you information about the disability program where you’re employed.
    Best of luck to you and hang in there!
    Best,
    Dianne ♡

  • Piper71a
    1 month ago

    Thank you for sharing your experiences. I’m currently in the process of going on disability in the UK, due to my MS. I felt/feel bereft due to not being able to work but your article has given me another way of looking at life. Well done.

  • Dianne Scott author
    1 month ago

    Hi Aurora ( @purple71 )

    I understand that it is difficult living with the Perils of Ms and working full-time. As my article indicates, I was worried about finances while on disability as well, but learned that my job offered short and long term disability which filled in the gap until SSDI was approved. Perhaps your HR department could offer you information about the disability program where you’re employed.
    Best of luck to you and hang in there!
    Best,
    Dianne ♡

  • Dianne Scott author
    1 month ago

    And that, @piper71a , is why it so advantageous to share our stories and different perceptions on how each of us deals with MS. We may be feeling one way about things, but by reading or hearing of another view could change our outlook all together.
    Thanks so much for reading and taking the time to comment,
    Dianne ♡

  • rldoll67
    3 months ago

    I found the article very well written and it resonated with me. I was working until last November and then, unexpectedly I was not working. I had one of those really big, life altering, exacerbation in early 2016 and my new limitations were being “accommodated” until they weren’t.

    At first, I was devastated. Work was such a big part of my life and of my identity. I was the “bread winner” so-to-speak and with two kids in college and the usual bills to pay I was very overwhelmed. We all adjust and now I have found my new life at home, with my wife who works from home to be very fulfilling. The financial part is coming together and the only real obstacle now, and it is a big one, when my cobra runs out in June I’m not sure where my health care and medication is going to come from. Working on it now but the path is not clear. What is clear, the quality of my life improved dramatically and unexpectedly, when I no longer worked. I enjoy reading articles such as this from people whose experience with MS more closely resembles mine.

  • Dianne Scott author
    3 months ago

    Hi @rldoll67 ,
    I’m happy that you enjoyed the article and happier that you took the time to share your very smiliar story. I do hope the insurance piece works out for you. Perhaps your local MS Society can provide tou with resources that can be of assistance. Good luck and thanks so much for reading!
    Best wishes,
    Dianne ♡

  • archtrip33
    6 months ago

    My job forced me to disability, which was denied twice. Now that I’m done with standard time off, they are having me get a list of my work restrictions from my neurologist over and over again that haven’t changed!!

  • dminva
    1 month ago

    Hi Archptrip33, it seems almost impossible to get the disability I know. What may help (which I did based on a comment from a disability worker) was make a list of all the ADLs (activities of daily living) that were restricted or I needed help with. The worker had said no one was doubting my diagnosis but not seeing how it “disabled” me on a daily basis.
    My list of affected ADL’s was how I labeled it and wrote things like Bladder incontinence and my job did not put me in a position to be near a bathroom at all times,
    My variable vision problems prevented me from getting to my job or doing my job on a reliable basis, my fatigue made it hard to stay awake and alert for a full day,
    I had some shaking and that caused me to need help with things like buttons and reaching, the diagnosis itself also included depression which would cripple me a times without warning, I ad problems with word scanning which made it very hard to answer questions at work even when I knew the answer I couldn’t always get it out. You get the idea, whatever is personal to you.
    I hope this helps

  • Dianne Scott author
    3 months ago

    Hi @archtrip33
    I believe that there are tactics used against employees by employers when they can’t or don’t feel comfortable terminating employment based on a situation beyond your control. I pray things are or get better sooner than later…
    Hang in there and thanks for reading.
    Warmly,
    Dianne ♡

  • dgerbing
    4 months ago

    I lost my business home everything when i was diagnosed. So now life is just about over. Sucks to be me

  • Dianne Scott author
    3 months ago

    Hi @dgerbing ,
    Though highly unfortunate, I would hate to think life would have to be over for you. I will pray for a more optimistic outlook for you… Hang in there and take care of yourself. Thanks so much for reading..
    Best,
    Dianne ♡

  • Flowers For Algernon
    4 months ago

    I wish that there was something I could do or say to console you other than to let you know you’re not alone, as much as we may feel that isn’t the case at times.

  • kami.friebel
    7 months ago

    Enjoyed the story. It was very hard for me to give up working after being diagnosed. Your very lucky to have an insurance company that will pay for home care. That would help me out so much but my insurance doesn’t cover anything like that.

  • Dianne Scott author
    8 months ago

    Hi gini,
    Praying for better days for you. Hang in there, my friend..
    Best,
    Dianne

  • gini
    8 months ago

    Loved the story, its great to here when things work out for people, wish my story had a happy ending.

  • Dianne Scott author
    8 months ago

    Hi gini,
    Praying for better days for you. Hang in there, my friend..
    Best,
    Dianne

  • angelad496
    8 months ago

    Thank you for this post!!! Its right where I am in my life right now!!! I so needed these words!!!

  • Dianne Scott author
    8 months ago

    angelad496.. I am so pleased that you enjoyed my article! Hang in there, my friend!
    Warmly,
    Dianne Scott

  • Julie
    11 months ago

    Good story! Sometimes we feel like we are giving up so much when all we want to do is what we feel is best for us. It’s no shame to do what we know is best but the comments (must be nice to not have to work, you’re lucky to be able to sleep in) can irritate me.

    I recently bought a home with my daughter and son in law. My daughter was afraid for me with all my falls and need for help in other aspects. It’s only been 2 years so we are still trying to figure this thing out but we try to respect each other’s privacy.

    The best thing being I can see my grandkids anytime I want. In that way, it’s a win/win for me. I get help and my daughter relaxes knowing I’m here when her kids come home from home.

    It’s not an easy thing all the time but it sounds like you are doing fabulous. Keep up the good job for yourself. I wish you nothing but good health and happiness.

  • Tess
    11 months ago

    How do I get more info on Home Instead please? I loved your article and am very proud of you. It is wonderful to wake up and know you don’t have to be at work. Especially when you take a shower and feel like you’ve run a marathon. Bless you.

  • Dianne Scott author
    11 months ago

    Thanks you, Tess! Yep, and ohhhh yesss re: the shwr!

    Home Instead’s website and phone number is:

    https://www.homeinstead.com/ppc/hisc-service-employment/pages/home-instead-senior-care.aspx?PPC=CPC&gclid=CjwKCAiA8bnUBRA-EiwAc0hZk5y8jd42On8oqiVO0H3Wqf-6BEEgxb9mTQDSQtwB7P8u7AkUS-ZoXRoCzjkQAvD_BwE&gclsrc=aw.ds

    Or
    877-575-5118

    Thanks for reading,
    Dianne

  • Pam
    11 months ago

    That’s a really great way of framing it!

  • Dianne Scott author
    11 months ago

    @Pam.. Thanks so much!

  • Kim Dolce moderator
    11 months ago

    Dianne, what a wonderful piece! Love how you built it around the Home Instead play on words. How great that you adjusted to leaving the workplace as well as you did and that you can bond with your caregivers as trusted friends! Looking forward to reading more about your thoughts and experiences, Dianne. –Kim

  • Dianne Scott author
    11 months ago

    Thanks, Kim! Glad you enjoyed it.. Definitely more thoughts and experiences coming! 🙂

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