The Inchworm

Left, right, up, down…some days I have no idea which way I am going.

I like to write about more than my illnesses but sometimes that’s what comes out along with the attendant emotions. I was reminded this morning by a friend to be gentle with myself about it. So that’s what I am going to do and just tell it like it is.

The last week has been tough. I am not getting out of the house much at all and I have been without 2 of my medicines. Not interacting with people on a more regular basis is a double-edged sword. I save spoons, but I also struggle because I feel very alone. That’s something that they never tell you when you are diagnosed with chronic illnesses. That if your illness is severe you will end up feeling isolated, a lot. You hear it from other people with chronic illness but part of you always thinks “That won’t be me.” I find that I often envy those who can still work and have active social lives. That used to be me and part of me really misses that. I miss being able to go to work every day and bring home a paycheck and then go out whenever I wanted to. Now days every plan is with the caveat “If I am feeling up to it.” I can push myself for special occasions if I am unwell but then I pay mightily on the back end.

Something I want others to understand when I say “no” to something is that it isn’t a value judgement on them or what they have asked me to come do. I want them to know that more than anything I want to be able to always say yes but the reality is that I can’t. I want them to know that it’s not just that I am “tired” and I can just come to whatever event it is and just sit. Yes, I am exhausted a lot of the time, but I hurt. Almost all my joints hurt all the time and then you add in the IBS and my needing to be near a bathroom that I may be stuck in for a while and it makes me not want to just go sit somewhere. By the time I drive wherever we are going I am often already almost out of energy and spoons. Then I have to drive back home, and we live in Atlanta so there’s nothing close to anything here.

Yes, I get wonderful love and energy when I do make it out and I wish that replaced all that I lose but it doesn’t always. I want people to know that I tear up and cry a lot more than they can know. Some of it is from the pain and a lot more of it is from the guilt that I feel for being a burden on our family. My medical expenses are debilitating even if I could work and without my working they are crippling us. So, I feel guilt like breathing and I feel shame for not being able to overcome and “just do it”.

Always #KeepMovingForward

Now the upside, because there must be one for me to get through each day. I aspire until I acquire, there is no faking it until I make it in this house! I work to #KeepMovingForward at all times. Some days I will take a few steps back, but I will make them up again and surpass those steps. There are days I don’t know if I am going left, right, up or down but I know my mission is to move forward whatever that looks like that day. Some days I get to dance a jig for my steps and those days are amazing!

I am blessed with a family of choice that rocks the house and love me right where I am at. I am thankful every single day for them. I hope I tell them this enough; I try to. I reach out every single day to at least one of them to tell them I love them. Most days I try to reach out to more than one, because it’s important to me that they know how much they rock my world just by being in it. I am grateful for the technology that helps me feel a little less alone by giving me multiple ways to reach out and connect with my family and other folks dealing with chronic illness throughout the world.

Jaxx demanding a morning walk.

I have beautiful, dorky and funny pets who help get me out of myself by demanding play time, cuddles and scritches and outdoor time.

I am beyond blessed with a partner who asks me “How can I help best?” instead of making me feel horrible for something I can’t help. Who comes home and hugs me tight every day and asks me how my day was even though I never left the house most of the time. He makes me feel loved and viable even when I struggle to do that for myself.

So yeah, put on the kettle and pour me a cup because life is tough. But you know what? At the end of each day I move forward on some level. It may not be physically, it may be emotional or spiritual. It may be a life revelation that I have been struggling with that finally comes clear to me. The important part to me is that I #KeepMovingForward even if only an inch at a time. Inchworms go far even if it’s just a little bit at a time.