Down the Tunnel

There seems to always come a day when you start to finally accept your disability. When you start to accept yourself and focus on the positive. And then you find out you have a vision threatening ulcer on each of your eyes why? Because you can’t close your eyes fully every night because you have muscular dystrophy. Just when you think you’re healthy and don’t have to go to the doctor for the 6th time since January, your giant happy balloon gets burst.

Days like this you just can’t muster the positivity. I got some great news yesterday I was going to share but I was only allowed to be happy for one day before that had to come crashing down. I know this is the ebb and flow of life…for everyone…but sometimes I’m just tired of dealing with it. Why can I not have a week where I don’t have to assert my disability or convince someone I have one  or conversely be reminded I have one? Why can’t I make it a few months without some weird health issue? I can sit here and come up with some BS about how I’m going to try find the positive in all this but I would be lying to you and to myself. It’s always going to be one thing or another. This will hopefully go away and then something else will come up. I can’t even let myself think about what might happen if the treatment doesn’t work.

I’m reminded now why I don’t date really anymore. I can’t even deal with this myself, how can I expect someone else to? On the same note, because I’m constantly having to deal with it in some way or another, I don’t have the time or energy to worry about someone else’s feelings or needs in addition to my own. Having a disability is a full time job (and I already have 2 jobs).

I feel bad even complaining about this because I know some of you have much more severe issues to deal with than I do but I just can’t get out of my misery today. I’m tired and drained. It’s hard to accept something that keeps insisting on challenging you and bringing you down. It isn’t my fault I have my MD so why am I having to deal with things that come from it (and have to pay for them to boot?). My dad reminded me that this isn’t a punishment but honestly, sometimes my whole life feels like a punishment. That or someone up there has a cruel sense of humor (and I’m sorry don’t give me that, “God doesn’t give us anything we can’t handle” thing right now). Tomorrow is a new day and maybe I’ll start feeling like myself again. Right now, it’s just me and my bed and a lot of sleep I hope.

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11 thoughts on “Down the Tunnel

  1. You are right, if it’s not one thing, it’s always another, there’s never a break… you’ve just got to get passed it and keep going!!! But I hope things improve for you soon!!! It sounds like you need it and soon!

  2. I feel for you that you have to experience what you are experiencing. I cannot fathom any of it except understanding what I have read about MD. I’m sure it truly is like a spiral effect. I commend you for educating people through your blog and for being “real” about it. I see you as a strong person! It has given me a more vivid picture and I now know what I am facing when I work with MD patients. Thank you. Take care and if I may say, “stay strong”.

    Marcella

    1. Hi Marcella. Thanks very much for the kind words. I’m hard on myself for complaining about my MD sometimes but you actually just helped me feel better because sharing the bad or the times I fall apart just shows the reality of it and shows I’m human. I’m gonna do my best to “stay strong” too 🙂

  3. Hi Jackie! I am currently an OT student at Loma Linda University and as I am learning about various heath conditions that my future patients might have, I want to get a better understanding of what challenges they might face on a daily basis so that I can better serve them and help them live quality lives. I want to say thank you for creating this blog to educate and bring awareness to others about MD. Also I think it is great how you are blogging as it can be an effective outlet when experiencing difficult times. Even though I cannot say that I have experienced what you are experiencing right now I can empathize with you. I wish you the best and hope things get better for you. Thank you!

    Monica

  4. Good luck with everything. I can’t sit here and pretend like I know what you are going through. I can say that your blog is a unique tool that you are using efficiently to help others and help yourself. I’m not sure when you started your blog, but I looked back to September 2013, where you talk about preparing for Ireland and wanting to travel. I hope you can still get out and see the world. I too use the internet to track my personal growth, and looking back at my posts from 5 years ago really shows how far I have come. Thank you for documenting your journey, and I hope these documents help you find solace on the bad days.

    Will

    1. Hi Will. Funny enough I started this blog as just a travel blog and then it morphed into something totally different. I definitely still do my best to get out and see the world. I love travel. Completely agree the internet is a great tool to track our personal growth too and see how far we’ve come. It’s a very cool thing.

  5. Hello Jackie,
    What I love most about your blogs is that you keep it real. I am sitting here, and I feel as though we were friends in another life. I can’t tell you that I understand what you are going through b/c truthfully, I do not. What I can tell you is that I appreciate your honesty. I know there will be days you can’t seem to squeeze out some positivity, but know that your readers are all rooting for you. Some days may appear worse than others, and good news seems to follow bad news, but I am so appreciative that you’ve taken your experiences, and that you share your feelings and emotions regardless of how you are feeling that particular day. Write on, Jackie!

  6. Hi Jackie,

    I appreciate your openness and sharing your life with us. Please don’t feel bad for expressing your emotions. I would hardly call it complaining. It is good to have a good vent every once in a while, and I daresay you are well within your rights to do so! Sometimes it’s hard to maintain positivity when life just seems to keep kicking you when you’re down. So much time and effort is spent blanketing the hardships of disability with forced positives that sometimes it almost feels cathartic to let a vent slip. This is not to say that life doesn’t have genuine, heart-warming positives. No, the warm fluffy positives are everywhere and we just have to be mindful that they are there too. They’re good pick-me-ups for times like these when things feel down.

    You’ve probably heard all of this before, but just keep your chin up and keep moving forward. You are beautiful and strong. Don’t forget that.

    Soooo, what was that great news you were going to share? 🙂

    1. Thank you Meryl. You words offered comfort during a trying time. The good news was that I’m going on a trip to Europe later this year. Unfortunately I haven’t been able to get excited about it or even do much planning because this eye thing has me sort of emotionally paralyzed. I’m hoping my eyes will be better in a couple of weeks so I can go back to normal and start enjoying things again. Thank you for the wise words 🙂

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