Relapse; My Angry Thoughts

As I have been saying, I am currently relapsing, almost 6 months after my first round of Lemtrada and 7-8 months after I started Aubagio and it’s been getting worse by the day. I am supposed to get my Acthar (alternative to IV steroids) today a couple weeks after my doctor ordered it because come to find out, all his nurse had to do was dial a number and get my doctor to verbally approve the prescription, a 10-minute task at the most but she was “too busy”. Well, my dad did a shift change so he could go into work later and went to my doctor’s office with the phone number and had them call and hey! Instant medication… What a difficult task! I only continued to slip downhill for 2-3 weeks but this is how healthcare is supposed to treat a Multiple Sclerosis exacerbation right? It’s not like it’s time sensitive or anything.… Anyways, as I have been getting worse by the day I have pretty much been resting and doing a lot of thinking. I am angry.

I am not sure where these thoughts came from, perhaps a dream? I am not sure but I have been thinking of life while I was on Tysabri and life before my major relapse in 2012 that left me with a lot of “permanent” disability. I was physically capable of so much! I mean before 2012 I was still going on crazy hikes, climbing on huge logs reaching 20 feet over a rocky river flowing downhill, riding motorcycles and just so much more! Now? I feel like walking down the stairs is as much of a challenge as climbing across that log; living on the edge! Walking down the stairs, I am just such a risk taker! It makes me mad because I am only 25, there is so much I want to do in life, so much that I did that I want to be able to do again. I am not ready to “let go”, it’s not like I had 20 years of doing that stuff and now it’s time to turn in… I want it back but I feel like I am running out of options here!

I need something that will not only stop progression but help reverse it but nothing like that is out yet; clinical trials. I have to do more research but I know I can try to do stem cells but the procedure everyone is talking about right now involves full-blown chemotherapy, wiping out your immune system or bone marrow or something, I don’t know, but I do know that I am not sure I really want to do that. Again, it’s not something I have really researched so who knows… All I know is I can’t live like this. I want the “spinning” to stop. The fatigue to improve. The strength I once had. This is not the life I picture myself living just a few years ago when Tysabri was working great; it gave me my life back and now it’s been taken away again.

I am so angry. I feel (as many of you surely do) “robbed”. And I recently realized that in the last year and a half or so it seems I have lost the “fight” in me that I once had. The will power to just not give up. But now? I am just so wiped out. All I really do is wake up, drink my coffee and look forward to going to sleep later at night where in my dreams I do not have any sort of disability; a short “break” from life. I am slipping… I often find myself just sitting there thinking, “What the hell happened?” and that is not the mentality I need right now. I feel almost hopeless because I don’t have any sort of “plan” in mind.

All I know is that I need that “fire back, that motivation, that mentality that I will figure this problem out. All problems have solutions; we just have to discover them. Hopefully, I will start feeling better in the next few weeks after Acthar slowly does it’s thing because maybe then it will be easier to start rekindling that fire and get up off my ass and DO something about my life. I am just so tired…

14 Responses to Relapse; My Angry Thoughts

  1. Anonymous says:

    Reading this while getting my Tysabri infusion. Tell me again why u stopped it

  2. I’m not the kind of gal to sugar coat stuff. Every time I tell my son “not now, mommy needs to rest,” a rather large chunk of my self dies. I’ll make it up to him when I’m not so…tired. I promise myself. When I break down in tears in the super market, because there are too many people and my senses are on overload, I promise myself I’ll do better next time. But deep down I know that’s a pie-crust promise. Easily made—easily broken. I want to give you a “Go Matt! Rah rah rah! It’ll get better!” pep talk, but I know it won’t matter much. Until WE decide to be the best we can possibly be, and to get back up and try again, there are no words to adequately pull us out of our funk. It’s our battle. Sure people can advocate for us! Bless them for it! But it’s only words until they know what it’s like to watch your body shut down limb by limb. It’s exhausting. One thing though: You’re not alone. This sucks, brother. This whole MS thing is one of the most unfair disease. We didn’t ask for it. It wasn’t a lifestyle choice like smoking or drug use. It was thrust upon us and we can’t give it back. But man, you’re not alone in this. We as MS folk, man we are FIGHTERS. We’re proud. We remember the life we used to have and we cling to it- life before that stupid diagnosis. So even on your darkest days, know for a FACT there are others like you out there. And even though we don’t know you, we fight along side you. Life is worth living and we are blessed to be here. Don’t sulk. That’s MORE wasted time. Keep getting up and drinking that coffee. Look at your mug and say, “That’s some mighty good coffee.” And let this alone, if nothing else, be the start to a good day.

    • I know and you know and I know you know that I know. It sucks but that is the way out lives are; our battle for us to fight. Even if we have support we are still in the very front of the front lines. Thank you,

  3. Dimitri says:

    I don’t know what to tell you Matt, and can’t begin to imagine what you’re going through, since I don’t have MS myself. I ran into an old acquaintance this weekend; the sister of a friend I used to dance with in a church group many years ago. The last time I had seen her she had just been diagnosed with MS, just a month or so after her mother had passed. Talk about a double whammy. I saw her this weekend at a church function; her daughter, and my SO’s nephew were playing basketball on opposing teams. The last time I saw her, probably over 15 years ago she was still ambulatory. Today she was in a wheelchair.

    We got to talking and she told me that the thing that keeps her going is her husband, and her kids. Whenever she feels like giving up, or being down on herself, she just thinks about them, how much they need her, and how much they all mean to her. I don’t know what to say other than just to hang in there. There are others out there like you, and I have no doubt that having blogs like yours to read helps them get through their day and makes them aware that they are not struggling alone.

    Best of luck, and God be with you.

    • Thank you, I don’t really have something inspirational to say keeps me going (lik kids or a significant other), but I guess the closest I have to that is the many email sI get about how my story and my blogging helps “them”, so again, thank you for your words 😀

  4. Lindsey H says:

    Matt, I can’t possibly imagine what you are going through. Hearing about what you have gone through, and the apathy that you’ve been treated with, maddened me. No one deserves that. I will say, even so, your strength is so evident through your writing and your voice (even if you don’t feel it at the moment). In spite of every trial. You have something that that very few people truly have– you have depth! You have persevered and overcome so much more in 25 years than most people twice your age. I can’t fathom how you have remained so strong. You gave me perspective today, something that I desperately needed, and it is inspiring. I have no doubt that this strength will continually enable you and push through this especially difficult time. Thanks again, and best of luck to you in this journey!

  5. Breanna says:

    Matt, it’s really hard for me to imagine what you are going through. It breaks my heart knowing that you long to do the things you love to do; some of which people take for granted. I’ve always believed that no one deserves to go through this, especially someone so young. I do want to point out that you are very courageous. Not all 25 year olds would be abel to overcome all that you have gone through at your age. You are a champion. Continue fighting hard.

  6. Timothy Lee says:

    Matt, I admire your courage and honesty in dealing with your struggles with MS. In dealing with the small minute details, it is very taxing, as simple problems (such as getting medication) that should have taken 5 minutes, turns into this long process can be extremely frustrating. I empathize with you because whenever situations where the answer/solutions appears to be easily solved by common sense, but instead is dragged out or passed along different channels can be very infuriating.
    I also enjoyed your blog post, because you speak of wanting to give up. That is not the part I would like to focus on, but it is important, because it is something lot of people in tough situations that feel the same way and as an aspiring OT, I am sure there will be days when I feel like I want to quit. It’s your subtle refusal to give up that I am most inspired by, and an attitude I aspire to have.
    “All I know is that I need that “fire back, that motivation, that mentality that I will figure this problem out. All problems have solutions; we just have to discover them. Hopefully, I will start feeling better in the next few weeks after Acthar slowly does it’s thing because maybe then it will be easier to start rekindling that fire and get up off my ass and DO something about my life. I am just so tired…”
    This is the type of attitude I want for all my clients and myself. When my client is frustrated, I WANT to know, which is why your frustration is so beautiful and necessary. Because your blog gave you an outlet to express yourself, and in your frustration and seeming defeat, your blog served as introspection into your true character. Reading your blog post, I can tell that you are a fighter and someone whose refusal to let MS dry up your thirst of life resonates deeply with me. Thank you Matt.

    • Thank you for your words, not only does talking about myself and how I feel help ME but not many people are willing to write about the “reality” of life with MS so I know it can help others, even if they don’t WANT to hear anything but happy-happy-fun-time with MS, balloons, and bike rides through the park. That’s not MS…

  7. Sarah Hughes says:

    Hey Matt,
    First off, you are an amazing writer. Your blogs are truly captivating and paint a picture that allows your readers to feel as though they are right there with you- what a gift you have! Like many of my fellow Loma Linda OT students I have gained such a deeper insight into life with MS that textbooks and doctors could never come close to relaying. I don’t have MS, but I have friends and loved ones who do- so on their behalf I thank you for your candidness, honesty, strength, resilience, and witty humor that allows you to see the potential and beauty in each day. I know you hear this a lot, but I will say it again because you deserve to hear it a thousand times- you are truly an inspiration and I look forward to your future posts!

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