Joyce šŸ Bowen Brand Ambassador @ beBee

7 years ago Ā· 2 min. reading time Ā· ~10 Ā·

Blogging
>
Joyce šŸ blog
>
MS

MS

‘This Side OF
ue MH


Sounds like an unpleasant topic. It is and it isnā€™t. It all goes by what you are willing to accept. That said, MS is a pain in the arse.

I used to be able to type as fast as I thought. For a writer, this is a beautiful thing. Itā€™s better than a roll in the hay. Itā€™s better than almost anything. Now I hunt and peck with two or so fingers. I know people think that the voice recognition software should suffice, but Iā€™m not good at that yet. My fingers flying across the keyboard was a wondrous thing. Perhaps Iā€™ll adjust to that software at some point. I remember when my hands started crippling up. I prayed to myself; take my legs, not my hands. But I wonder now if I really meant that.

MS Symptoms

 

Emotional cl jos.
Hl Sodio so a
[EID teeing peoviomns Pain GE
[ID Fatigue ni0ades ayanceon I)
EID sexi tystuncion — a
EID Muscie spasms roe GE
EID oo Terms EE

[ID Walking ditficulty

Underwear is a thing of the past. I wear Depends now. Yepā€”you heard that rightā€”Depends. You have no idea how hard it is to give up underwear. Itā€™s those little things you miss. I remember telling myself that this isnā€™t going to work anymoreā€”that running to the bathroom every ten minutes to prevent accidents was a joke. Iā€™ve been potty-trained all my life. Now I had to admit that was no longer true. Things beyond my control prevent control. I am content with my decision to move on.

Moving out amongst people is different. There are times I teeter-totter like a drunk, and I feel I have to explain to people I have a disease. Iā€™ve read where people have been fired from their jobs because they were suspected of being drunk on the job, but they had MS! Iā€™ve had people rush to catch me, but I assure them Iā€™m fineā€”I have MS. I tried to get a job before my MS was too obvious, but failed. People wonā€™t hire you if youā€™re disabled. Oh sure, thereā€™s a law against that, but rememberā€”they just donā€™t have to tell you why they wonā€™t hire you. If they said, ā€œWe canā€™t hire you because youā€™re disabled,ā€ I could sue the pants off of them.

My body is numb. Ā I rememberĀ the first time I scratched an itch and my fingernails couldn't seem to reach it through the flesh. Ā I had to stop scratching or I'd tear through the skin. Ā The itch reigned, and I waited for it to subside. Ā It's nearly an everyday occurrence now. Ā I sing a song in my head: I scratched the Itch and the Ā  Ā Itch Ā  Ā won....

Sex is a thing of the past--a distant memory. Ā I can't even tell when I have a UTI never mind enjoy such intimacies.


I think the thing I miss most is my hands. I used to service my computers, sand down my walls, cut my own damn toenailsā€¦ All that is gone now. Typing be damnedā€”I canā€™t cut my toenails.


52087100.jpgIā€™ve had to adjust. If I spend all my time mourning what Iā€™ve lost, I cannot revel in what I still have. I can still think. I can still do repairs on my house albeit daunting and slow. And I am still breathing. I refuse to look towards a bleak future, and I choose to live in the moment. The moment could be all I have. At any moment, my arms could choose to drop uselessly to my sides, and I will head to a nursing home to be fed and cared for. Just think of what you cannot do without the use of your arms.

My days are loudly numbered. Ā But this is true for all of us. Ā The whispers in my ears are just louder than yours.

So Iā€™m here today, and Iā€™m glad of it. Iā€™m speaking to you, and it gives me pleasure to do so.

Now if I could just get used to that damned recognition software.


Copyright 2017 Joyce Bowen

eafa44f3.jpg

https://www.bebee.com/@joyce-bowen

https://www.linkedin.com/in/joyce-bowen/

https://twitter.com/crwriter1

https://joycebowen.wordpress.com/author/joycebowen/

https://medium.com/@joycebowen


About the Author: Ā Joyce Bowen is a freelance writer and public speaker. Ā Inquiries can be made at crwriter@comcast.net

Sobre el autor: Joyce Bowen es unĀ escritorĀ independienteĀ yĀ oradorĀ pĆŗblico. LasĀ consultasĀ puedenĀ hacerseĀ en crwriter@comcast.net



My Patron site. Ā Please support my work.



""""
Comments

Cyndi wilkins

7 years ago #31

#41
Thank you Ben Pinto for her emotional honesty here and in her many other pieces. Unless we have walked in those shoes, it is impossible to understand the impact abuse has on the psyche...Perhaps the sharing of stories such as this will begin to turn the tides and shift our collective awareness to what we can do going forward to stop the downward spiral of disease that surely is a result of such trauma. Joyce has already done that in her life with the loving and responsible treatment of her own children. There are very many of us that can learn great things by her example. Thanks for the mention Ben...I appreciate it;-)

Cyndi wilkins

7 years ago #30

#39
Yikes!...Not sure my heart can handle it...But good for you for writing about it...I use writing as catharsis too...Cheaper than a shrink;-)
#38
Cyndi wilkins You ain't read nothing yet. My mother was a psychopath. That might become obvious in some of my other posts. That setting in The View was rather idyllic by comparison.

Cyndi wilkins

7 years ago #28

#37
Thank you for that...However, I do not consider myself unlucky really...It's feels more like being "strangely blessed". ..if that makes any sense. It has forced me to become accustomed to change and quite frankly, just live in the moment...Thinking too far ahead causes me a great deal of anxiety...I've already seen how ugly things can get, so I try to focus on living the best I can with each given day...Pain free is even better;-) I just read your post "The View" and I'm struggling a bit with that one too...It sounds to me like your mom had an undiagnosed situation going on with her...not that I am defending such retched behavior and her abuse of her family...But I'd be willing to bet she suffered some kind of trauma, perhaps in her own childhood, that she was never able to come to terms with...I don't believe people are "born to be bad." Someone hurt her too...I don't know if that helps at all, but perhaps considering that as a possibility might help you to feel some compassion for her somewhere in your being...A common thread you might share with the wounded child in her heart. Blessings to you...
#36
It's hard to find words to respond to you. I'm so sorry you have RR. We move on and deal day to day. It is what it is as the saying goes. Some of us are just unlucky. I wish you all the best.

Cyndi wilkins

7 years ago #26

Hi Joyce Bowen...I've read this piece several times and continue to struggle with my feelings here...My mother suffered debilitating MS throughout most of her life, so it is very difficult to absorb the magnitude of fear it is generating for me personally...As I also struggle with remitting/relapsing auto-immune dysfunction, it shines a very bright light on all of those dark corners of my mind. Perhaps drudging them up from the bottom of the well is exactly what is necessary to face those demons head on...Thank you for sharing such an intimate part of your being with us.
#34
Aaron Skogen Thje honor would be mine.
Ian Weinberg Feel free to ask any questions ever. I know how hard it is for the well to truly understand the sick--even though they may be professionals. In fact, I find professionals are the worst at grasping the nuances of disability.
Thank you, Pascal Derrien. Thank you all for your comments, stories, and shares.
Thank you, Tsufit **
#5
Thank you, Gert Scholtz.. Words escape me.
#4
Thank you Kevin Pashuk

Pascal Derrien

7 years ago #17

one of my ex bosses suffered from MS and she has become a passionaria and activist on the subject , now I have not seen her in a while but she has been relenteless in advocating for better access to banks , retails shops etc...and recognition in generral it sounds like you are doing the same with a pen :-)

Lisa Gallagher

7 years ago #16

Joyce Bowen, it pained me to read this but I'm glad you shared it. I have 3 friends who have MS. One friend's MS has stayed about the same for years but her eyesight is being affected now. The other 2, they have to walk w/assistance, sometimes use a wheelchair and other days they may be in bed for up to a week at a time. Like you, they all seem to have tenacity and each one of them focuses on the here and now. None of us know what tomorrow may bring and I'm glad you write, it's great therapy and you're an excellent writer. Sending you many good thoughts.

Ali Anani

7 years ago #15

Wit great passion, teary eyes and admiration I read your buzz Joyce Bowen. You are a great example of sensory people and in moving the senses of others.

Ian Weinberg

7 years ago #14

Joyce Bowen It is the nature of my profession that I deal with neurologically compromised individuals on a weekly basis. But what you have described in this very important post is the real personal perspective of living with the consequences of lost neurological function. I thank you therefore for reminding me and thus re-awakening me to the suffering, the sensitivity to which becomes suppressed in the cold clinical environment. I wish you many moments of purpose and gratification.
#16
Deb \ud83d\udc1d Helfrich The Wahl's Protocol

Sara Jacobovici

7 years ago #12

Sounds like your voice is strong regardless of the software! "All the power to you" Joyce Bowen!

Devesh šŸ Bhatt

7 years ago #11

You have corage and give others courage.

Milos Djukic

7 years ago #10

Fractals Forever: Be BRAVE, provide something NEW and magnificent for the others, then the whole WORLD is yours. An you already did Joyce Bowen, thank you. I am waiting for more.
Joyce Bowen you are a stronghold on beBee. Thanks for writing it. Just sharing everywhere

Milos Djukic

7 years ago #8

cc. Javier \ud83d\udc1d beBee

Milos Djukic

7 years ago #7

Dear Joyce Bowen, fractals are forever. Kind Regards, Milos

Liesbeth Leysen, MSc.

7 years ago #6

Joyce Bowen deep bow to you, for your strength and courage.

Gert Scholtz

7 years ago #5

Joyce Bowen I admire your character and spirit as it shines in this post Joyce. If I say I wish you the best, it sounds so commonplace, but I really do. Keep writing, keep crafting, keep on. Gert

Kevin Pashuk

7 years ago #4

A powerful piece Joyce... I can only imagine the frustration you feel as your body rebels. Your spirit and tenacity come across strong in this post. Thank you for tagging me. Sharing.
Donna-Luisa Eversley

Articles from Joyce šŸ Bowen Brand Ambassador @ beBee

View blog
2 years ago Ā· 7 min. reading time

As an investigative journalist, you hear about thingsā€”and thingsā€”and thingsā€¦ Ā· Many of them are hard ...

2 years ago Ā· 5 min. reading time

Somebody said [I donā€™t remember who] that the only way this could be happening globally is that all ...

2 years ago Ā· 6 min. reading time

First, A disclaimerā€”by me. Ā· I know some of you will want to hit me. Ā· I was always pro-choice. Ā· I ...

Related professionals

You may be interested in these jobs

  • BrightView

    Landscaper

    Found in: Jobrapido US C2 - 11 hours ago


    BrightView sedona, United States

    Bright Ā· View - JobID: Ā· [Building Maintenance] As a Landscaper at Bright Ā· View, you'll: Cut turf, trim and edge along borders, and blow using power equipment; Prune shrubs and low trees to improve t ...

  • Encompass Health

    Physical Therapist

    Found in: Jobget US C2 - 4 days ago


    Encompass Health Cherry Creek, CO, United States

    Starting Wage base upon experience: Ā· $42. 70/hr Ā· Closing Date: Ā· Applications are accepted until the position is filled. Ā· More one-on-one time Ā· More success for patients and professionals Ā· BE TH ...

  • Lyft

    Drivers Needed in Richmond

    Found in: Adzuna US C2 - 6 days ago


    Lyft Ettrick, United States

    Earn a $400 bonus in Richmond when you give 40 rides during your first 7 days. New drivers only. Terms apply. Ā· What is Lyft? Ā· Lyft is a flexible earning opportunity and a platform that connects driv ...