Brette's MS Interview

Name: Brette
Age: 24
Diagnosis: RRMS
Location: British Columbia, Canada

1. When were you diagnosed?

I was diagnosed 3 weeks before my 21st birthday.

2. What were your early symptoms? What made you thing something was wrong?

My early symptoms were tingling in the arms and hands. Extreme fatigue. I was tested for so many things and was told it was just me getting older. I eventually started to get numbing in my mouth as well. I truly thought I had eaten something I might be allergic to. Then it travelled to my whole face and I went to the doctor. It wasn't until I lost complete vision and was admitted into the ER where they actually took me seriously. 

3. What are your top symptoms you deal with every day? Do you use mobility aides?

My number one thing is not feeling my hands. I have little strength and they're always sore. I'm knocking stuff over all the time because I can't feel it. I also deal with Cog Fog and fatigue daily. Constant battle of exhaustion and not being able to process information. When I get stressed, I get lots of numbness in my body and some vision impairment. No aides yet.

4. What is your relationship like with your healthcare team? Positive? Wish it could be better?

My healthcare team is awesome! I was really worried about this specific doctor because he has so many awful reviews. But he is so kind, honest, and helpful. My nurses are also quick to make sure I'm contacted right away if I reach out to them.

5. Are your family, friends, spouses, coworkers, and neighbors supportive? Did relationships change? Do people you know treat you differently now?

I have a really amazing group of friends that are very supportive of me. They always make sure I'm taken care of, and they never push me when I say I'm at my limit. I'm very thankful for them every day! It's made relationships difficult because I don't want to be seen as a patient. They're either too caring or just ignorant. 

6. What are some things you loved to do that you had to give up due to having MS?

I loved spending all my time doing fun stuff! Now I have to reevaluate and think about whether or not a certain event will be taxing on my body and if it's worth it! I take a lot more time for myself now though. 

7. What are some things you still love to do? What's your passion/hobby?

I love puzzles! Relaxing in the sun in the summer. Put me in the water and I'm happy. But the puzzles actually keep my brain active and is something I can do without pushing myself. 

8. What is the most negative outcome that has come about since having MS?

I do feel like the people who are on the outside of my support group only ask me how I'm doing because the feel bad for me. People have put me in a box that I didn't ask for. 

9. What is the most positive outcome that has come about since having MS?

I love me! I have been able to take a step back and remember that my number one priority is me! I don't feel guilty laying in bed, saying no, or taking care of me! And that's awesome.

10. Do you have any pet peeves about MS (labels, ads, peoples views about MS, etc)?

I hate when people say "my moms friends dogs vets aunts cousins wife has MS"! Or when they say I can't do something. I get the "well have you tired?" Like yes, buddy! I can't feel my hand and you think I'm going to be able to swing a golf club?

11. What's your biggest fear with living with MS?

Becoming unable to take care of myself. 

12. What's your biggest hope with living with MS?

That I'll still be able to be the career mom who does it all. 

13. Best piece of advice you can give another individual living with MS? 

Don't read anything online until you've processed it. Give yourself time to deal with it. It's traumatic, terrifying, and downright sad. One day you won't event think about it anymore, but don't scare yourself yet.

14. How do you feel about the MS community? Social media? Yay or nay? Are you familiar with MS organizations such as the MS Society, MSAA, Multiple Sclerosis Foundation, etc? Have you ever used their services?

I've made some good connections on social media! But I have also been banned from a couple of MS support groups. Good and bad resources. 

15. One thing you wish people knew about what it's like living with MS?

Every day is different. One day is good, next day is bad. I can't control it.

*I want to thank Brette for the interview.
* If you would like to follow Brette, follow her on Instagram: @nu_kungfubreezy

Comments

Faith Agauas said…
Thank you Brette for your honestly. As Rebecca's mom I want to thank you for responding to get blog. I have secondary progressive she is my caregiver also. I use laughter to get thru the Good times and the bad, and there are more bad lately than good. But I stay positive, active, and now as a advocate. I never give up, I never stop. I never settle. I have MS, ITP, Hashimoto disease, stage 2 kidney failure and cognitive impairment, I've had cancer 3times, and shingles 7times!! I've cleaned house of all the negative, fake, non caring people in my life and I think everyone who has MS should do. Much love to you and your family ❤❤❤

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