Teeter Totter

I have so many things that I need and want to do yet, every time I have even a moment to myself I feel the need to rest. I have no idea how to figure out any sort of balance in this.

Take today for instance. My son is out in the garden with his father. I would like to work on assembling my cookbook, or assembling (for lack of a better word)this blog but….I spent all day at my sister’s for Mother’s Day yesterday. It was too much, I was beyond exhausted. I am surprised at how well I feel today but I know if I push it… If I don’t rest today…a crash is likely.

When then, do I work on things? I suppose it comes back to focusing on healing, doesn’t it? The more I heal, the more I will be capable of. *Sigh*

One day at a time, one foot in front of the other

I’ve just started reading No Impact Man by Colin Beavan. The book follows a man and his family, over a year, while they try to lower their impact on the environment to virtually nothing. I bought this book because I’ve read other life as experiment books and enjoyed them and I was hoping to pick up some tips on decreasing my impact.

This is something that I think about a lot. And when I say think about, what I actually mean is panic. There are so many changes that I’d like to make, feel like I need to make, that my illness gets in the way of.

Things like making my own self care products, shopping locally, walking instead of driving… Are all rendered impossible when you don’t even have the energy to get through the basics of living on a daily basis.

I am constantly telling myself to focus on my healing. The more I heal, the more I will be able to do and the more I will be able to live a life aligned with my values. This is true, but… The guilt I feel…. And the panic…

*Sigh* One day at a time, one foot in front of the other…

Guilt Becomes Her

I have been seeing a nutritionist/health coach for the past several months. I’m supposed to have an appointment with her today but I cancelled and… I’m filled with guilt.

She, the nutritionist has me doing SCD(specific carbohydrate diet). I’ve made some pretty significant gains in my health since starting the diet, including an increase in energy. I think of it this way, if I had a million steps I’d have to take in energy increases from where I started to get to a healthy energy level, I’ve taken about 100 since the start of the diet. I still have a long way to go but that’s a substantial increase, given I’ve only been going the opposite direction for the past few years.

It was wonderful to feel like I could move. So wonderful that I wanted to move more and more. So I did.

The feeling of freedom from being able to move my body when I have not been able to in so long, combined with a sense of panic caused by a recent health scare (too much to cover here but my naturopath thought there was a worsening in insulin resistance and was advocating for a medication that I do not want to take. False alarm but…) seems to have caused a relapse in some obsessive thoughts/behaviors related to old eating disorders and long story short… I did too much and I crashed hard.

This is not the end of the world, though admittedly it did feel that way. I just need to rest….a lot. So, I cancelled all of my appointments for the week. I’m feeling better. I could technically handle the appointment today but I don’t want to.

I’m going shopping with my sister this weekend. She needs clothes, so does my son. I’ve been looking forward to it and I want to make sure I have the energy to go. I haven’t been able to do something like this in near a year (I’ve done all of my shopping on line). Appointments take a lot out of me and I get so activated that I can’t sleep after.

I do believe I’m making the decision that is best for me right now but…I can’t shake the guilt. I should go to the appointment. I should be able to handle it. I should be a good little girl and not make a fuss or cause any inconvenience for anyone. *Sigh* Man, childhood programming is a bitch.

You don’t have cancer, you’re fine!

I had my appointment with the hematologist last week. I want to take you through a brief synopsis of said appointment, you know, in case you’ve only ever been to the doctor for things they see everyday… Things that are acknowledged… Things that are recognized as real and therefore you were treated as valid…

I want to preface this by saying that this doctor did seem to be a perfectly lovely human being. She was kind and knowledgeable and did seem to genuinely want to help. This is in stark contrast to many, many (not all but MANY) doctors that I have seen who instead appear to not have much knowledge at all, while simultaneously acting like they know everything and completely discounting anything I may say as having any value, if they even acknowledge the fact that I’m speaking at all. That said, let’s get to the appointment shall we.

A little back story, I am an anxious person. I don’t want to get into all of that now but I am. Anxious. Appointments of any type tend to have me extremely overwhelmed to the point of nearing panic. This has improved over the years and I can mostly hide it and get through appointments seeming like a fairly normal human being instead of the ball of anxiety wrapped in skin that I feel myself to be. This appointment was different.

I spent all morning in a state of panic. I was really nervous about having to ask about the possibility of MCAS. I had asked my naturopath if she would write something for me to bring. She didn’t think it was necessary as she thought the doctor would have heard of it. I wasn’t worried about her not having heard of it but more of me not being heard when I brought it up(because this has commonly been my experience) but she’s a busy woman so I didn’t push it.

On top of the normal appointment anxiety and the MCAS question induced panic, the day was just one of those where everything seems to go wrong and I ended up being 10 minutes late. I am NEVER late. I prefer to arrive at least ten minutes early because… You guessed it, the possibility of being late causes me copious amounts of anxiety.

Needless to say, I was a ball of raw nerves when the doctor walked in (thank God my sister went with me, in case I lost my words because I did just that). Apparently, so much so that it was readily visible because it was the first thing said doctor commented on when she walked in the door (she wrongly assumed that I was anxious about my diagnosis, again wrongly assuming I thought it might be cancer).

She went through all of my blood work to explain to me that I do not have cancer and I am fine. I’m fact, had I (and my sister. Thank you, I love you) not brought up MCAS, that would have been the whole of the appointment. You don’t have cancer therefore, you are fine (giving credence to my belief that people only take you seriously if you have cancer, no matter how sick you are with something else). But I’m not fine. I have been very sick for eleven years. If she wasn’t aware of that (because, you know, why would my PCP want to mention that in my referral), she most definitely was aware that my white blood cell counts have been high, chronically, for years. That’s why I’m here.

Her explanation was that my body was just reacting to things. Well yeah, no shit. Why?

I said that I wasn’t worried about cancer but that I think that I have Mast Cell Activation Syndrome and my sister filled in the back story because… again…anxiety…no words. She, the doctor not my sister, said that yes, that could account for my wonky white blood cells and ordered more tests(I’m still unclear on the results) and sent a referral for an immunologist.

This appointment actually went really well, like this is the best outcome I could have hoped for but… If I hadn’t pushed, it would have been, you don’t have cancer, you’re fine. No acknowledgement of anything else.

When we were getting ready to go, the doctor said something along the lines of, sometimes it just takes awhile to get a diagnosis, especially with these rare diseases. I think she was trying to be comforting and I really do appreciate that but …. It was said so nonchalantly and off the cuff, like over a decade of having a debilitating illness is no big deal. Eh, it’s just the way it is. But it isn’t nothing. Have you, dear doctor, ever been sick for even a year straight? I doubt it, otherwise you wouldn’t be so nonchalant. I understand that doctors are only human and that they only have the information that they have but maybe, just maybe, if more doctors listened to their patients and took them seriously, it wouldn’t take more than a decade for people who are very ill, to find a diagnosis and hopefully treatment that actually helps.

Between a Rock and a Hard Place

What do you do when you are stuck? When you are, as the proverbia expression goes, between a rock and a hard place?

Maybe it’s more of a chicken and egg thing? I don’t know. If our former decisions cause our current reality but our decisions have been made of wounds that can’t heal without a new reality, what then? How do we change?

If you are so sick that you can’t heal without help but the only help available to you is also harmful to you, what do you do?

If healing requires being in a safe environment, free from trauma but you aren’t physically capable of living on your own until you heal and the environment you are currently in and the only other option you can see are filled with trauma, what then?

I do not want this blog to be a negative space and I appologize for it being so thus far. I would like this to be a place of hope but I’m really struggling right now. This space is currently a reflection of that.

I’m not meaning to come across as hopeless because I’m truth I’m not. I have faith and hope but the truth also holds a lot of darkness. I don’t believe we are served by trying to stay only in the light when there are shadows that are need of exploration. I think it’s necessary to explore these shadows publicly. How else do we create awareness? How else do create change?

Please bare with me while I struggle.

Unhappy Halloween

I’ve made the final decision. I will not be dressing up for Halloween this year. I’m just too sick. It isn’t possible.

This is, of course, something that I already knew but I didn’t want to accept it.

I’m hopeful that because now we know what we’re working with, symptoms will be under control by next year.

I’m hopeful that the hematologist will be able to give me an official medical diagnosis of MCAS.

I’m hopeful that this will mean that I will be taken at least somewhat more seriously.

I am hopeful but for now this really sucks. Anyone who knows me knows how much I love Halloween. You may or may not know that I wasn’t aloud to celebrate it as a child for “religious” reasons and that that makes it all the more important to me now.

*sigh*

Now to figure out how I’m going to manage taking my son trick or treating….

I need a wheelchair.