Thursday, July 18, 2019
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Surviving The Difficult Days

Some days it feels like there isn’t much fight left in me.

Some days I want to crawl in bed and pull the covers up over my head and stop and hope the world forgets about me and just allows me to slink into my safe place and hide. I think there would be a lot of people who know me who’d be extremely surprised to hear me admit this. Jenna? The eternal optimist who smiles and laughs at life and always seems so together and happy – she wants to do what?

Now, don’t worry about me I’m just allowing that little doubting voice to think about this for a minute. If I went back to a time I when wasn’t following my dreams what would happen? Fighting chronic disease is hard; following your dreams at times can be even harder. I wasn’t working at much then because I was in so much pain and distress, I was merely subsisting and surviving day by day due to the ravages of my AS. Why does this seem like a good option some days to go back to that time? That horrible time. Why do we let thoughts and feelings like these enter our minds?

A few years ago when I started finally feeling better from my treatment and feeling well enough to be able to work again I may have started overcompensating for the years that were robbed from me by AS. I’ve pushed very, very hard to create my daily art apple and build my AS Awareness Campaign and it means a lot to me but, I’m feeling the day to day toll it is taking on my physical wellbeing but mostly I’m tired of the emotional toll. The last time I shared similar thoughts to these on my blog, TheFeedingEdge, someone asked me to stop my crusade and I was baffled that sharing honest, human feelings of doubt would cause someone to react in that way – so please don’t tell me to stop – I don’t want to stop. I want to fight through these feelings and keep going but – I want to be able to share this part of my life with you also. I think it’s important for us to share these thoughts and  acknowledge that we all have doubts and troubles and we all look wherever we can to find our way around them – and I will find my way through this time but… I’ve been trying to fight feelings of throwing it all away and fading back into oblivion to a place where so much isn’t expected of me – a place where life is calmer and quieter and I cannot be criticized or bullied or misunderstood. To a horrible yet simpler time.

I feel pulled to it lately – it’s fierce at times.

But, then I think of being a part of this organization and what it stands for, why we all come together here. And I think of all of the people I’ve met and I know that have gotten through so much. You’ve fought cancer and miscarriage. You’ve fought Lupus and Fibro. You fight everyday to be healthy and happy and whole.  So I will take these negative thoughts and stomp on them and then choose. I choose to stop feeling sorry for myself and get on with it. No matter how tired I am or how discouraging things can appear at times – I’ll keep wrestling for my life and for my dreams. I’ll keep fighting for the spirit of happiness to stay in my heart. I may give in for a short moment or two – heck, sometimes even a day occasionally but I will not let the negatives live in me much longer than that. I will not dwell there long – I’ll fight like a girl and keep fighting.

My year long journey to raise AS Awareness by creating an Art Apple A Day is about to finish up. Please join me on my blog or Facebook page. From there you can follow the last three weeks of daily art and hear all about my 24 hr Apple-A-Thon happening on September 30th – October 1st to raise money for the Spondylitis Association of America.

It’s ok to feel these feelings. Let them in, sit with them for a bit and even have a big huge cleansing cry, but then get up and take on the next struggle because getting past them is what life is all about. Getting past and over life’s obstacles leads to our greatest joys when we truly know inside that we did it! We fought through the hard times and we came out victorious.

Jenna

The informational content of this article is intended to convey general educational
information and should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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12 comments

  1. I completely understand. I can relate to several aspects of this. I would never tell you to stop, I would just give you a hug, encourage you to take some time for yourself, rest, become reinspired, and then keep going. You are wonderful!

  2. Jenna – Beautiful post! You are doing an amazing thing for all of us with AS. The creative ways you have brought awareness to AS is beyond anything I could ever imagine. Your hard work, positive approach and determined attitude is what has made The Feeding Edge so amazing!
    You also have been a wonderful support person for me personally over the last several months and I want to thank you for that! It is always comforting to know that I have such an amazing fellow AS’er I can call a friend! Keep fighting girl!! You are never alone in this battle! You are an inspiration! xoxo

  3. Jenna,your blog is exactly what life is all about,with/without AS. You have to fight for the life you want to live,every day and with everything you’ve got! I am so happy to have gotten to know you.People like us have a harder time letting others know of our struggles with the simple things of every day drudgery because so much is expected of us…we are the cheerleaders of life and are not supposed to get down.ever! It is good and healthy to recognize that fact and be able to show that it is not the end of the world to take a “breather’ for a moment,a day,or even a week until the passion for life returns in full force and we can go back to our usual bubbly selves. Loved your post!! Keep up the good work:)<3

  4. I totally relate. I been dx with AS since 2001. Symptoms for basically all my life. It has been completely spiraling out since 2005. There are absolutely days that I wish I could run away or crawl under the covers…. Then I remember my ankle cramps if run and it hurts too dang much to lay down let alone stay in bed all day. So I get out of bed and stick around for another day. I get up and try again. I must say we really must let ourselves have these down moments and admit them. It isn’t good to say “I’m OK” or pretend we are OK if we aren’t. We aren’t real or ourselves otherwise. I fight feeling down on myself because I’m not OK and I know everyone is tired of the same old problems everyday. But this is who we are. Take it or leave it. 😉

  5. Well said Jenna, It does no good to hide these feelings, or pretend they don’t exist. They do, they are real, as you say – face them, acknowledge them, deal with them, then make your choice. Yes your choice – do you really want to stay like that, or fight through to your stronger self. **hugs** Jenna

  6. Jenna, negative to positive, for sure, is so hard some times. I’m in one of those moments now. At the moment when you don’t see the light. At the moment of, is this what my life has to offer just pain all day, every day and limitations. And what I need to hear and read are the feelings you shared with us here. To know I am not alone. To read this gives me strength and a lot of other people strength to move forward. Your mission this year has been a success on so many different levels. Not only AS awareness but I feel also the teaching of strength, will power, compassion, friendship, love, determination, motivation and learning that we are just human with very natural feelings of fighting for what we want in life. So don’t you dare stop ;). Don’t you dare ever give up. As I am going to do at this moment because of your post, I’m gonna close my eyes……take a huge deep breath…. Release……and move forward with determination to win this battle. You are an amazing inspiration, Jenna. Xxx

  7. Thank you for all your posts. When I’m having a bad day from AS your posts remind me that I can handle this. I may have days where I can’t do all that I want to do, and sometimes I just have to watch as my children play when all I want it to play along with them but I do my best and fight my hardest!

  8. Jenna – it is very hard to have been so misunderstood, but then that might just be the story of my life. I believe that no one should tell you to stop – but on a day where you complained about your tasks – I believe what was said is you can stop and start anything when you want too. You wanted to stop, so perhaps, “someone” said, ok – stop – do not feel like you have to do this for me. Concern about your well being, that was all. I am very sad to think someone’s words were taken so bad that you would write about it later on, making that person fell small and unimportant. No encouraging words have come my way – it seems like some people can write or blog about everything they feel, and then some of us get judged more and more with every pain filled day. You and your crusade are awesome and have helped so many people. You truelly are a gift, thank you for all you do, and never stop until you want too. And please show kindness to those of us that are truelly alone in life and pain… it is hard, and not fun… and obviously not worth it

    • Hi Valerie,
      I’m so sorry for your pain. Sometimes when we come together to share and support one another our individual troubles affect one another. I think this is one of the things that has most surprised me about this last year. I feel so deeply that I want to help people not live a life with AS. Because as you know – AS in it’s worst form is horrible beyond description. You and I were both in low places and our lives ended up affecting one another. I was shocked by your words and felt them deeply but I have also learned that I have a platform to share this journey – and everyday it amazes me that people are listening and reading. So, I think I was also stunned that when I shared my deepest doubts that those personal doubts could affect someone else so much. On the days I want to crawl under the blankets – I will but then I’ll think of you and others going through so much more than me and surviving and I’ll pick myself up and find a way through it. You are in my thoughts all of the time – I did understand what you were saying and maybe it hit me so hard because a piece of me wanted to listen. You helped me in ways you cannot imagine and I’m sorry that when I saw your pain I was in too much of my own at the time to reach out to you. Blessings and love to you – please keep fighting. Love, Jenna

      • no need to mock me (I am in no one’s thoughts all the time or at all, unless they need something) – society reminds me daily of my non-worth. I do not have to live in pain – but then again, society tells me constantly that I do – fuse quietly and shut-up. I need to fuse quietly and shut up 🙁 You are right, I can not see how I helped you when I read the words written out of anger – anger of someone telling you to stop (and that was not how it was meant) Anger and Pain are not helpful, sorry. But thanks for all you do, just remember how special you are

  9. “Jenna? The eternal optimist who smiles and laughs at life and always seems so together and happy – she wants to do what? ”
    Its good to be optimistic and happy always.. and stopping is not an option for us it is just a thought that stays for a while then we see pain is increasing and we start moving… but sometimes at those week moments it is too heart breaking that people think we have heart made of steel..

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