Living Life 2 hours at a Time

There’s this idea out there that if you (…or I) just think positive, then whatever is ailing us will just magically disappear. Like “have you tried not thinking about it?” or “You just need to be more positive”. As if the reason for my pain and illness is because I think about it too much. Well let me tell you how NOT true that is…

I’ve had days where I wake up and feel ok. I’ll decide to just pretend I’m a normal person and carry on like everyone else. I make up my mind that I am normal and healthy, as if what has been ailing me for over 15 years is just in my imagination. I’ll make plans to go out and about, run errands, be social, and whatever else healthy people do to fill their entire day. If I don’t think I’m sick, then maybe I won’t be sick. It feels amazing for the first 30 minutes or so before my body catches on to what I’m doing. I’ll feel confident, motivated, proud, and excited for life. Then reality sets in and I start to feel sick. I’ll get tired, nauseous, dizzy, and my body starts hurting. Everything in my body screams “lay down right now”! I then realize, “oh wait… I’m a sick person. I almost forgot”. At this point, I abandon my plans. If I’m in the store, I check out and go home as quickly as I can. Once I get to this point, I am suddenly disappointed, discouraged and angry. The grief hits me all over again. The grief of how I’ll never be like everyone else. I’ll never have a full day to do whatever I want. I’ll never be able to work or be social like everyone else. I’ll never feel good all day. The reality is that on a good day I only get about 2 usable hours at a time, if not less. Sometimes if I play my cards right, I’ll get a few more hours after resting. Never all at once though. If I’m busy in the morning, then rest all afternoon, I may feel functional again in the evening. It’s all a game that if I play by the rules, things will work out for me. However, there are plenty of times I follow all the rules and still be completely sick and dysfunctional. There really is no rhyme or reason for how my body behaves. I just have to take each day as it comes and hope for the best while avoiding triggers.

So this idea of ‘mind over matter’ doesn’t work in this case. I’ve tried it and failed! What does work for me is keeping my mind occupied. Even if I’m feeling sick or in pain, I can ignore it if I keep my mind focused enough. This doesn’t mean everything goes away. I may still have to stop whatever activity I’m doing to rest and take frequent breaks, but if I’m not focused on how bad I feel, I can get small mental breaks from it. Of course, there are those days when the pain is so overwhelming that I can’t think straight and just want to disappear. I hate those days and am thankful every time I don’t experience that.

I’ve also changed my life in ways that certain people believe will “cure” me. I’ve changed my mental state to be mostly positive and thankful for everything by practicing meditation and mindfulness. I’ve completely changed my diet. I eat mostly clean foods, no gluten, almost no dairy, and very little red meat. I get fresh air and appreciate nature. I take time for myself. I read, sleep, drink lots of water, pamper myself, and play music all day. The only thing I don’t do is exercise, and that’s because I just can’t. Physical exertion disables me so I avoid it whenever possible. Although, I do miss it terribly! I was athletic when I was young and I would still be an athlete if I was healthy. On occasion I ignore my body and do a little bit like shoot some hoops, or take some hockey shots. If I’m really brave, I’ll even get on my exercise bike for 10 minutes. I always regret it though. It leaves me exhausted and in pain for days. It’s so dumb!!

Being chronically sick is not a choice. It’s not some kind of failure on my part. I didn’t do something to deserve what is happening to me. I am stuck with a broken body, no matter how hard I wish it wasn’t true. I have to just accept it and live within my limits. It’s hard though when my brain doesn’t want to accept it. It is a constant conflict between my body and brain. To me, giving in is giving up. There are many days when I do just that. I give up. I actually lost about 10 years because I completely gave up on life. I don’t want to lose anymore time. I’m trying my best to fight again. Not sure how long I can keep it up, but I am certainly trying. I want my life back, even if its only 2 hours at a time.


11 responses to “Living Life 2 hours at a Time”

  1. Janette Ramos Avatar
    Janette Ramos

    Hello Meredith, I understand you, sometimes I try to be a normal “healthy” person and I continued my day and within minutes or hours I start to feel bad, it is something so exhausting and depressing it takes away your desire to do things. When I go to family gatherings or get the kids out I always think “I hope I don’t ruin their day.” It is a day-to-day struggle, but it is comforting to know that there are more people who go through the same thing, in a good way, you do not feel alone. I hope you feel better and with less pain.😊

    Liked by 1 person

  2. Thank you for sharing. Having an auto immune disease is tough especially the fatigue. Similar to you i used to be an athlete, I can remember playing sport during the day, clubbing half the night and still dragging myself out to train the following day. I would moan that I felt tired but back then I knew why felt that way. Now I have an auto immune disease I know what feeling tired really means. Keep smiling and keep posting, I miss you on you tube 😊😊


  3. I read all of your blogs and all of your readers we wish you so much to get better but our mind power doesn’t seem to work… The same goes other way – people who are hated and wished all evils don’t die because of that. I just hope for wonder, wonders do happen sometimes…


  4. What do you think about stem cells treatment for autoimmune deseases? I have found only one clinical study with some results
    I know this is not an approved treatment and done in other countries than US because it is illegal. But if I had money I would try nevertheless, I have nothing to lose, no big family.


    1. I have no idea. I haven’t heard of it yet. Not sold yet though


      1. It is offered here and a different procedure here
        When I searched for this kind of treatment they offer it mostly to MS patients, well, those have no alternative, no treatment means disability, but I get the impression that Sjogrens Desease is an under-represented desease noone eard of and noone cares about much. I dream I would rather have cancer and be taken seriously and didn’t have to hide my desease and try to convince people and doctors that it is serious, similar to cancer but 100 times slower. It’s so frustrating.


      2. You are so right. A relative has terminal lung cancer and we often compare our symptoms which are very similar. He’s dying. I’m not. yet I feel the same as him.


  5. Thank you so much for sharing.


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