I start days out with the hope that I have the ability to get through the day

I hold this hope as my joy. There are certain things I do for myself that help get me through each day. I do my nails with Polygel so they last a while. Having them look nice helps me feel more human even when it’s all I can do. Sometimes I have to dedicate an entire day to them because that may be all the energy I have, but they last a long time so it’s worth it in the end.

The thing is when I write, type, wash dishes, or really do anything, my hands are in my sight. When I take pills, give myself injections, infusions, My hands are always the place I have to focus my attention. So I like to see pretty hands with nice nails. It matters to me. It always has, even as a baby I loved pretty things. My mother tells stories of me taking bits of lace or crocheted doilies and trying to wear them. So I make my nails pretty, not because its easy, but because it matters to me that the thing I see about myself the most looks pretty.

This mentality and need to look nice despite how I feel effects other parts of my routine as well. For example, when I get up I style my hair. Fortunately, having curly hair can help since I only have to wash and set the curls weekly but that also means that that’s it for the day my fatigue takes over. When it looks too dry or tangled between washings I'll use one of my ponytail extensions or a bun to get more time out of a hair wash and set, and still have my hair look good. It really is amazing what hair pieces can do. I also sleep with a sleeping cap to keep my hair looking nice in between washes. It may seem like a little thing, but it makes a world of difference. I also have an arsenal of hair products to help me out depending on what my hair decides to do in the morning. Curly hair often has a mind of its own and you just have to work with it and not fight it, so that frustration can also be a part of my morning.

When I’m done with my hair I like to do my make-up even if I’m not going out. It’s something I do for myself and not for others. I have a subscription to Boxycharm. I really enjoy having make-up come in every month, new things to try out, pretty colours, moisturizers, different face washes, I love the eyeliner's and mascara’s, the highlighters, and bronzers, these are things that make me feel like I can get up and go on with my day. Make-up hides the sick in me, it helps me feel better about myself when I walk past a mirror. Whether that’s right or not I don’t know, but it’s how I feel, and its something I can do for myself to help me feel better even in a small way. It’s hard to be forced to see how sick you are in your own face. I find it brings me down, but that is one of the few things that are within my control. I get to think, ‘Hey I really like my make up today.” I like that even if I don't go anywhere, even if maybe I end up in bed all day and I end up being the only one that ever saw it, it wasn't for nothing, it was for me and I feel better for it. 

When I was in the hospital after surgeries I would wake up and want to do my makeup as soon as possible. After surgery there is a certain helplessness and lack of control, you can’t control your body, or even really move. But having that bit of normal, that bit of pretty made me feel better.

The time I take to do my makeup is also a time where I get to sit quietly in the morning and relax. It's an art I get to wear that builds me up and I truly enjoy it. It's a quiet time before everything starts, or before everything falls apart.

Then I have my cloths. I try to dress to make my self feel good about who I am now. Some days it’s easy, I just pick out an outfit and put it on. Other days it’s not, putting on and taking off different outfits to find what I’m comfortable in is tiring; both emotionally and physically. These days I have no energy left. I have learned certain things to put on for these days. My special outfits that I know will always work for me, so I don't have to keep guessing and trying on thing after thing. I just know I'll feel good in them. These outfits are for the days when I have no energy and I know I want to feel good about how I look. I can put them on and not worry about it.

All of this is just to start my day. Never mind if I need a shower or something with my health goes wrong and I would need to take extra meds. This is all based on a best case scenario. So, I’ve done all this work and the day still has yet to begin. I still have to go downstairs to get breakfast and take my pills.

At this point I am in pain, I’m still tired, I'm still fatigued, but I'm going. I’ve gotten out of bed and I'm feeling ok about how I look so that's what I call a win. It is after this point that things usually start going wrong and sometimes I end up back in bed.

Sometimes the pretty outfit that I tried so hard to get right, and quickly changes to comfy pyjamas. The hair, that I so carefully styled, ends up back in a sleeping wrap. I usually leave my makeup on if it’s still during the day, but it does come off at some point.

I start the day hoping and I started the day trying.Sometimes starting the day happy, joyful, watering your plants, filling your house full of bright colours and sunlight has to be enough–even if it’s just a few hours. Sometimes you really have to force it out of yourself, and it’s not always easy; I say that from experience. 

It’s important to remember that the days you can barely get out of bed but you make it to your couch and have a cup of tea are a win. Whether you end up bingeing something on Netflix or going back to bed if that's all you can do then that's all you can do. You did something with the day and life goes on tomorrow, and tomorrow you can win the day again.

Why I Get Up

The pain doesn't stop, but I can't focus on every moment of pain. I focus on each moment of good things, the joyful things, the quiet times, the things that bring me pleasure and happiness, and most importantly the people I love. The things that make me want to get up, and move through it all. 

I've been sick since I was a baby so I’ve been fighting against illness all my life, its not a new battle for me. Chronic fatigue (CFS) is different in that it demands that you rest. The sick I've known has been a fight past it battle, fight hard and you fight through. 

Chronic fatigue demands rest to feel better. So for me it's a combination of both battles; a fight through, a push past, and a rest. 

The balance between a lifetime a fight to live and the need now to rest to get better is a constant challenge. I’ve always had to fight, push through, keep going, “don't stop or you will die.” Don’t break, do not rest, do not lay down, and do not stop pushing forward. It was almost as if it was my life mantra.

With my severe asthma as a child I had to learn to not cry. Crying was dangerous because you were gasping for breath and you couldn’t breathe. If you can’t breathe, you suffocate. It may seem harsh, but it is a reality I had to learn to face.

I had to get tough really fast. 

This push through mentality doesn’t play out well when you're an adult with other health problems. I’ve learned that CFS doesn't listen to this, it fights back harder and can’t be beat. When you keep pushing all you end up doing is hurting yourself more and more.

Now I'm here and the best thing I can do for myself is be me. I see the world as I am now and I have to realize that rest and balance is the only answer to my survival.

To be good to myself is to take care of myself.

I do love myself if I really sit down and think about it. I am not depressed, I do treasure my life. No matter how hard it got, I have always wanted to live. I've always loved being alive and I still do, and I still love the ones that love me. They are the true joy in my life.