Am I crazy?

Am I crazy?

Yes, but there is no other option!

Recently I have been faced with reminders about how much of an outlier I am, that my life exemplifies a certain amount of crazy. By this, I mean that most people look at me and rightly assess that I have significant disabilities resulting from living with severe rheumatoid arthritis for several decades. Instead of living such an active life, perhaps I should be at home, resting. On it’s face, my life seems improbable, if not crazy or ill-advised.

Sometimes the questions people ask about my activity or the looks I get throughout an average day, make me ask myself: Am I crazy for doing what I do? For living this active life? For expecting that I live the life I wish?

For example, today I am exhausted and achy. I had the day off from work and was looking forward to getting some chores done. But I woke up with a headache and wasn’t that productive. Yet, here I am deciding to write instead of getting more rest.

But I simultaneously cannot help living the way I do, nor can I imagine anything else. Like a shark, I must keep moving. I must keep doing the things that are important to me, spending time with the people that matter, living a life that is full both of activity and meaning. Otherwise, I feel like I have given up, given in to the RA.

I have always been a stubborn person. Like a bulldog, I latch on and can’t let go. I stay late at my work because I made a commitment to myself to get it done. When I find an organization to care about, I’m all in. When we take a trip or make arrangements to spend time with family or friends, I want to do it even if I don’t feel well.

Having a purpose, seeking meaning in my life has driven me from a young age. I don’t just want to get things done, I want to contribute in ways that matter. I worry about running out of time and energy, constantly thinking about tasks that have not been completed. How can I keep my life fulfilling?

Perhaps it comes from my experience with physical decline. Even as a child, I recall losing joint motion, strength, and abilities. It felt like a door closing, then being cemented shut. My persistence could not break down these barriers, so I started considering how I spend my time and deciding how to expend the energies and abilities that I still possess.

The RA may have taken a lot of strength and abilities during the course of it’s progression, but I still have my own life to live. From the outside, I am sure that it does look crazy to other people. Perhaps they see the pain and exhaustion on my face and wonder ‘why is she doing this?’ However, what is crazy from a stranger’s perspective is just normal life for me.

I cannot change the fact that I have rheumatoid arthritis. I cannot change the damage it has caused, and cannot predict what else may come. But I will continue living a full, thriving life. My life mission is to enjoy, to do what I can, and make it matter with the people who matter to me.

So yes, I am crazy. And I know it. But I also know no other way of being and living. For me, the activity keeps me active and fighting the RA. It keeps me in the game and provides meaning for my life. Without this crazy sense of purpose, I wouldn’t know what to do with myself. The fight is what gets me up every day and keeps me moving.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (17)
  • janda13
    2 years ago

    I feel like I am crazy. I have been fighting one disease or another since I was 11. I was treated for Lupus SLE for 10 years before I saw a really thorough Doctor who saw that it was Moderate-Severe RA. About 3 yrs ago my husband and I moved out of state, I grew up and spent my whole life in a small town in Alabama & moved to a big city in Pennsylvania, away from my family & friends. Now I am truly alone & am declining quickly. It is pretty bad when your husband catches you talking to the dishes as you are washing them or is constantly telling you to stop talking to the TV. I don’t know what else to do. I also have to add Seasonal Depression to my LONG list of conditions because I am now in an environment where it is cloudy or snowing or raining all of the time, at lease that is what my psychiatrist told me. I just turned 37 and in the last 6 months I lost over 50% of my hearing suddenly, went into menopause, gained 50 lbs when I have to force myself to eat so I can take my medication. I sit here all day every day with crazy fatigue but the inability to sleep which makes the pain worse. So to sum it up I am 37 years old with RA, fibromyalgia, ADD, IBS, Severe Depression, Seasonal Depression, according to my sleep study I only sleep for 4 minutes at a time & the longest amount of waking and going back to sleep without just giving up was 3 hrs, anxiety, Hearing Aids and as my husband says “You walk around like a 95 year old woman”
    So…………..AM I CRAZY?

  • Richard Faust moderator
    2 years ago

    So sorry that you are having all of these difficulties janda13. While the physical aspects can certainly be terrible, the emotional problems linked with RA are often overlooked. This article from our editorial team looks at the emotional aspects, with some tips: https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/.

    You mention that you are seeing a mental health professional. This person or your doctor may be able to help you locate an RA support group. While, for your protection, we cannot give medical advice over the internet, sometimes it can be helpful to sit and have discussions with people in similar circumstances.

    In addition, you may want to take a look at our Facebook community at https://www.facebook.com/RheumatoidArthritisDotNet for an additional resource for RA information and support.

    Please keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)

  • Connie Rifenburg
    2 years ago

    Kelly Mack, may I ask how old you are? I’ve read many of your posts here and have thought to myself, “how does she do that?” after so many years w/RA, how does she keep such a positive attitude and the ability to work, write, and have a meaningful relationship too. I have to ask myself if we have the same disease!! 😉

    Reading positive statements like you and others make on this board makes me wonder why I’m not able to keep an attitude of “fighting” RA and how do you want to keep going each morning as you lose more and more capabilities to care for yourself and just simple independence of enjoyable living?

    You ask “Am I crazy?” and I ask if I’m the only one who just doesn’t have the fight left anymore. I know people will say that the other option is ….what?… meanwhile, I ask “why do I want to keep on fighting?”

    I don’t want to be morose. Seriously. But I can’t help but admit that the more things I can’t do, the harder it is to find a reason to keep taking the meds, going to the dr, remaining involved with people.

    I have RA and am also losing my sight w/macular deg. and glaucoma. I had to stop driving this year and altho I’ve found Uber and family/friends to help, I still feel so very helpless at times knowing there is no cure for any of the chronic diseases I have so my future is one of losing more and more life enjoying capabilities. Yet I endure the monthly injection into my eye, monthly infusion for my RA and then those nasty flares or pneumonia or some unknown cause that rushes me off to the hospital one more time. Just last week I started on a 6 wk OT to try to get back the use of my left hand after surgery to repair my thumb and carpal tunnel. Then I face replacement surgery for my knee.

    How do you face all the surgeries, illness, flare ups as well as knowing that each year, just normal aging and the medicine side effects are adding more & more issues to your already full plate?

    My question is: What do you do when you are tired of fighting every day for a few hours of … what?… I don’t fear the thing that most people are fighting against; death. (and no I’m not suicidal-that’s not what I mean) I just can’t find that “happy face” to put on most of the time now.

    I know there’s no easy answer, but I’d like to know if there are others who struggle like I’m feeling now and that can’t find a believable reason to fight every single day of your life.

    thanks for listening…
    Connie

  • Richard Faust moderator
    2 years ago

    Hi Connie. Sorry to hear that you are having these difficulties. Know that you are not alone in struggling with the day-to-day of dealing with chronic conditions.

    I am actually Kelly Mack’s husband and I’m writing this after her response. I just wanted to add a couple of thoughts. What you describe sounds a lot like what they refer to in the diabetes community as “diabetes burnout” (there have been entire books written on it, but for some reason the concept hasn’t really spread to other autoimmune or chronic conditions). It is considered different from depression and instead involves a person becoming tired of the constant attention a condition requires and wanting to stop or at least take a break from the maintenance or changes. This seems a completely understandable reaction. Unfortunately, it is also not conducive to condition management or simply enjoying life to its potential.

    Thought you might be interested in this article Kelly wrote on not avoiding , the often overlooked, mental health aspects of RA:

    https://rheumatoidarthritis.net/living/dont-neglect-mental-health/.

    Also, this article from the editorial team looks at managing the stress and emotional aspects of RA:

    https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/.

    You may want to look into whether there is a local RA support group (your doctor may be able to help with this). Sometimes meeting up with and talking with people in similar situations can be helpful. Please keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)

  • Kelly Mack moderator author
    2 years ago

    Hi Connie, thanks so much for your thoughtful comment. First of all, you are not alone. There’s lots of days when I do not feel up to the fight and struggle with my mood and motivation. I am guessing others have similar feelings too.

    And there is no denying that you have a lot on your plate to manage. It can be overwhelming. Where do I start and how do I keep going when it is a long, difficult road?

    I am nearly 40 years old and have been living with RA since I was 2. After all this time (and not very effective treatment options in my youth), I have a great deal of joint damage, physical limitations, and chronic pain. Having both hips and knees replaced has helped to some degree, but the surgeries were very difficult and involved complex recovery. And then there have been medication side effects and RA adjacent conditions. It is really tough. I feel deeply for you and the health challenges you are going through.

    I can honestly say that I do not always have the fighting spirit. But it is definitely something that I purposefully cultivate. When my inner thoughts say “this is too much and I cannot fight anymore” I tell myself, that I can and I will. I remind myself of the things in daily life I enjoy and the people who I love. Sometimes I have to focus on one day at a time. Other times, one moment at a time.

    There are days when I need to recharge, perhaps stay home and just rest or practice some self-care. I pretend to take time off from the fight, set it aside for another day. But I try to focus on what is important, break all of it down into little bites that are (hopefully) a little easier to manage than everything at once.

    I hope these thoughts may be helpful to you. For me, finding solace and support in this RA community is also important for fighting day-to-day. Rooting for you and sending supportive thoughts.

    Best,
    Kelly

  • Tich
    2 years ago

    Rock on if you can Kelly. Don’t try driving however if one eye has cataract and the other has icepick pain from scleritis. Just lock me in a dark room and throw me a biscuit occasionally.
    Tich

  • Kelly Mack moderator author
    2 years ago

    Hi Tich, so sorry to hear about your eye troubles. But I do appreciate the solid advice. Hope that you find support in this community. I will definitely be here with a biscuit when you need one. Best, Kelly

  • Kelly Dabel moderator
    2 years ago

    Hi Tich, sorry you are having such pain in your eyes. You are not alone here. In addition to speaking with your doctor, this article on the Effects of RA on Eyes and Vision may be helpful to you: https://rheumatoidarthritis.net/symptoms/eye-problems/. We’re here to support you and appreciate you being part of our community. Kelly, Rheumatoidarthritis.net Team Member

  • thegallopinggrandma
    2 years ago

    Kelly, I’m yet another member of your ‘crazy club’ and if my husband tells me to go and rest just one more time…………………………!! My Rheumatologist says that I should just keep on walking, so I stumble onwards and upwards muttering on the joys of RA ! Maybe at 70 it’s just old age, but I’m not going to give in to that either ! Really enjoyed your blog – gave me a chance to sit down for once !

  • Kelly Mack moderator author
    2 years ago

    Thanks so much for your support galloping grandma! (Love your handle!) I’m happy to have such good company with me in the ‘crazy club’! Gotta keep working and fighting (or galloping)! Best, Kelly

  • Richard Faust moderator
    2 years ago

    Hi thegallopinggrandma. So glad the article resonated with you. Full disclosure – I’m Kelly’s husband. I thought you might be interested in this interview we recorded on being married to someone with RA:

    https://rheumatoidarthritis.net/video/what-its-like-being-married-to-someone-with-ra/.

    In particular, I acknowledge that it is Kelly that gets me to do things I probably wouldn’t otherwise. She teaches me everyday that life is meant to be lived. Best to you. Richard (RheumatoidArthritis.net Team)

  • Kelly Dabel moderator
    2 years ago

    Thank you for sharing your feedback, so glad you enjoyed Kelly’s article. Good for you for staying as active as possible. Sending positive thoughts your way. Thank you for being part of our community! Kelly, Rheumatoidarthritis.net Team Member

  • Lawrence 'rick' Phillips
    2 years ago

    Kelly, we share the common enemy of RA but also the common joy of being part of such a wonderful community. I really enjoyed your blog today. No, we did not choose RA, but we do get to choose what we do with it. your writing mirrors my own experience. Like you I will never surrender to it, and RA will never win this fight,

  • Kelly Mack moderator author
    2 years ago

    Thanks so much Rick! One of my favorite movie quotes is: “Never give up, never surrender.” (From a Tim Allen comedy called Galaxy Quest.) When the going gets rough, I always think of this! Must keep fighting the good fight! Glad you find this article and our RA community helpful. 🙂 It encourages me to read your kind words! Best, Kelly

  • Kelly Dabel moderator
    2 years ago

    Thank you so much for sharing Rick. Glad that this article resonated with you. We truly appreciate you being part of our community and glad it brings you joy. Keep at it, your positive outlook is inspiring. Kelly, Rheumatoidarthritis.net Team Member

  • kat-elton
    2 years ago

    Kelly- So much of your article resonates with me, to the point that when reading it I was shaking my head while smiling! I think that having, as you say, doors close and cement shut from a young age changes the way you approach life in many ways, even if you aren’t conscious of it. For me, having my wrists fused in my early twenties was a pivotal moment, when I really, truly, understood that I was losing pieces of myself that I’d never get back. As a result, like you, I push through pain and fatigue on a daily basis to live as fully as I can every day. I often get comments from people telling me to rest, and although they mean well, they don’t understand that true rest is not available to me because of my pain levels and that sometimes the “noise” of activity helps more than anything. I’m in your crazy club for sure! Thanks so much for this article. 🙂

  • Kelly Mack moderator author
    2 years ago

    Thanks so much, Kat! I am glad to have you in the crazy club with me! 🙂 Happy to know that it is not just me that hears these well-meaning comments, but knows that our reality is somewhat different than others’. Somewhere I read awhile ago that people with chronic conditions and pain like RA benefit psychologically and emotionally from being busy and keeping active. This really resonates because although rest is good, too much makes me stir-crazy! Gotta keep busy to keep that RA at bay! 🙂

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