⏳ Cure for MS Brings Hope - Waiting Brings Despair

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SUMMARY 

The cure for MS brings hope while waiting brings despair. Jen DeTracey unpacks the impact of embracing and waiting for the the cure while managing the spectrum of feelings that can arise.

Cure for MS Brings Hope - Waiting Brings Despair

Does waiting for the cure for MS bring you hope or does it bring you despair?

Or maybe a little bit of both?

In your mind, think about what the answer to that is. Ponder that for a moment. While you're doing that, I'd like to share a story with you.

When I was diagnosed over 11 years ago, I came out of the hospital recovering from the left side of my body which was not working properly. My left lip was drooping. My hand could not write and my left foot was dropped. Steroids solve the problem. But emotionally I was a big hot mess. I was diagnosed with MS.

I was at the peak of my career. My life had completely changed. I was afraid that I'd never be able to work again. I lost my identity because my identity was all wrapped up in my work and career. I didn't really know who I was outside of that. It was just a big and messy time for me.

I didn't have a lot of hope. I imagine that many of you who have gone through the trauma of diagnosis and did not feel hopeful either.

You may have felt hopeless, and that's understandable. I'm so sorry that that happened to you. It ain't fun. No one wants to go through this journey. Yet when we get to this place, the "yet," we start looking for solutions.

I wanted to get rid of MS. I want to get it out of my body.

I hate it. I hate it. I hate it. That's how I felt at the time. I wasn't a person to go online and Google information back then. I don't know why. I think was in deep denial. Like, hey, I'm just going to shut the door on MS. It's going to go away. That did not work out so well.

No, it was a very rocky time in my life. Denial. Then I thought I could buy my way through MS. I can pay for this and that. I could just push it out of my system. Right.

I could be cured. And that was the next phase for me. I'm gonna, I'm going to get my veins blown up so that I can get blood flowing and then I'm going to be better. The fatigue is just going to magically disappear. If I go on this diet, or if I do something else. I can't even remember all the things tried. There were so many. I really invested a lot of time and money in attempts to eradicate MS from my body.

At the same time I knew that there was no cure. I knew there were MS medications out there. I was a little cynical or skeptical in the beginning stages about taking MS medication. I did not want to be signed up, or enlisted into a program right away. I wanted to figure things out for myself first. I was very fortunate to have a neurologist that was willing to give me a little bit of space and time to do that.

This built trust between myself and the neurologist so that I could heed her advice as I was on this journey. And as I've shared in many of my YouTube videos (Women Thriving with MS channel), my neurologist said, "it can take up to three years of working through grief." She noticed this from patient after patient post diagnosis.

I found this information very helpful.

So circling back to this idea of a cure, there is a desire, a hope, a wish, a longing for a cure. That would be fantastic. I would love that. I don't know if that would take away the fatigue that I have or the vertigo relapses.

It's a mystery. That's for sure. Right now where we're at, we have preventative medication. Which can be helpful in terms of preventing MS progression.

Some people pay for stem cell therapy. Selma Blair(actress) and others have the financial means to pay for this procedure. Some people have flown to other countries and paid a hundred thousand dollars to receive stem cell therapy. The procedure wipes out their immune system and then replaces with stem cells to kick start it again.

Even if it stops progression of MS, it hasn't taken away the damage MS has already done. Take for example Selma Blair. She still sporadic changes in her speech. So is stem cell therapy a cure? Would cure take away past damage? Or would it simply just stop MS from attacking the body anymore?

Is this the cure?

This is the big question. The $50 million question.

How much would it cost for the cure? Of course, many people would do whatever they could financially to pay for the cure. Because who wouldn't want to be cured of MS? I think it'd be fantastic. I would love it.

Coming back to the question of does waiting for a cure for MS bring you hope or despair or both? For me, it wasn't an easy journey. At first, as I mentioned, it was very bumpy. There were many speed bumps along the way.

What I have discovered is that for me, I choose to focus my attention on living now the way that I can.

Certainly all of us on the MS spectrum are in different places in our life in terms of mobility, brain capacity, pain thresholds, all of these things that can be impacted by MS.

I've talked about having vertigo relapses and massive headaches. I've had pain. I've been very fortunate at this point to still have the ability to walk and to do certain physical activities yet, not all that I could do before. I'm very cognizant of the fact that there is a point in my life where I may not be possible.

When I look at my life and I'm encouraging you to explore this as well, what does it bring me to think about the cure?

To wait for it, to actually be like, okay, I'm going to wait for the cure now, where when's it coming? Come on, hurry up, hurry up, hurry up.

I just personally think for myself, if I were to be in that place of thinking about the cure all the time, it would be stressful for me. I'd be miserable because my whole life would be on hold while I'm waiting for the cure.

It's almost craziness. Imagine if that's the though your having that urgency. The amygdala in the brain asks that question, am I safe? Do I matter? And if the answer is no, your whole physical system that runs down the body, the vagus nervous is activated.

Then it sends a message back up to the brain. No, I'm not safe. When this happens frequently, that is very hard on the body. It's hard on the brain. I've learned that that is not my path. That is not my path to be hoping for something that doesn't exist currently.

When it comes, hallelujah. I'll be in line for sure. You can bet on it.

Are you putting your life on hold while you wait for the cure? And if your answer is yes or maybe, I want you to ponder the idea that that is not serving you.

How is this thought having a negative impact on you and your life?

If you are feeling despair or fear or constant worry as you wait for the cure, what could that energy and time be used for that would bring you happiness? That would bring you joy. That would bring you something that you would feel much better about?

The waiting thoughts are kind of like an operating system of a computer, it's always working, but it's not in the forefront. You can hear a little sound from the computer. It's always working. So being aware that you would like to have a cure, acknowledging that you feel some urgency around it. That you're really longing for it. That's important to acknowledge those feelings. They're there. They're real.

We don't want to negate the the feelings. You want to encourage those feelings as they show up. And say, yah, I'm feeling very sad or I'm feeling a bit of hopelessness in this moment that there is no cure. I'm scared. I'm worried and breathe into those feelings and acknowledged them. Absolutely. That is so important. We don't want to erase feelings. We don't want to push them away.

If you wake up in the morning and you're thinking, "why isn't there a cure?" and you're go to bed thinking about it, this will be damaging to your life. It's not going to help you move forward in the way that you really desire to move forward at this stage of your life.

If you are bedridden right now, my heart goes out to you. That's not an easy place. I have met women who are in that place right now, and they are strong even in their suffering or their despair. They are strong and motivated to shift and take action. For example, doing exercise even if it's only for a couple minutes with the support of a special device.

My heart is flooded with so much love and compassion and I just, I literally right now, if I think about this, I could cry of joy for those that have gotten to the place for those of you that have gotten to that place in your life where you're moving forward. You're figuring out what can you do.

You've figured out What can you do in your life while you're waiting for the cure. So I encourage you to think about how you can embrace hope in the possibility of a cure. Also how you can have this tenderness, this tenderness towards yourself to acknowledge when you feel that despair, when you feel that sadness, when you feel that heartbreak.

Then be able to let those feelings go.

You can revisit the feeling later. You can schedule time. You can schedule five minutes a day to feel despair and suffering and worry. But when you hold those feeling in your body for a long period of time it's detrimental to your health.

Then you can't let go of the feelings, you need support.

If a friend isn't going to cut the mustard, you can go to therapy. You can see someone who can help you work through the deep, hard grief and losses that are real, that you are experiencing your life.

I went to therapy. I dealt with the grief. It doesn't mean that I don't go through cycles of grief during a vertigo relapse, where I'm curled up into a ball because it's difficult and frustrating.
But it's not long lasting.

And that's what we want to ensure, right? We want to ensure your feelings of despair are not with you all the time. If they are, you need help, you may need to call a crisis line or get a therapist or have someone that can listen and be there for you to help you can work through it.

So when you think about the cure, I'm encouraging you to embrace the idea of hope of the possibility. I'm also encouraging you to find ways to move forward with your life. Think about things that you enjoy that you can do. Live and experience things that make you happy. The things that are important to you. The glue that keeps you together in a way that you say, " that's me." Really embrace that part of yourself.

Because you know what?

You are not broken. You're a whole person. MS is just a piece of who you are. It ripple. It may ripple into your life in many ways, but it's not who you are. It's your life situation. And it's part of your day to day of being in this world. When you can look at it from this perspective, then you can see I'm not broken.

For example here a reframe:

I'm a person with a life situation in which I live with MS and these are the things that happen as a result of having MS in my body. I enjoy spending time with friends. I enjoy eating a good meal. I enjoy going to a movie, listening to music, doing crafts, getting out and getting some fresh air.
I am learning about the world, connecting with people. Even if I live remotely, I can connect these days.

So there is so much possibility in life. Even in that place of uncertainty.

I'm Jen, DeTracey the founder of Women Thriving with MS. And I'm a guide that coaches, women that want to be able to taste, touch, feel and experience the possibility of a desirable future. If that's something that interests you, you can reach out to me and we can talk further (support [at] womenthrivingwithMS.com) and set up a time to for you to receive coaching.

I'm wishing you well, as you embrace the things in your life that bring you hope and joy and happiness, and that you are able to acknowledge the feelings of despair, sadness, fear, worry, and get the support that you need. We'll see you soon.

Jen DeTracey is the founder of Women Thriving with MS and a certified coach. Women Thriving with MS is an online community for women living with MS. You can join the private Women Thriving with MS Facebook group it's free and YouTube channel. Jen offers online courses, a membership and coaching.

Jen's been living with multiple sclerosis for over 11 years. She went through this process of surviving with MS to striving MS to thriving MS. She is a guide, coach and teacher who helps you move forward on your journey from surviving to thriving with MS.

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