Sometimes you just have to take a few minutes to pout. I’m pouting publicly today. Sorry about that… This is my 5 minute tantrum.
The ups and downs and complete unpredictability of living with this illness is so so frustrating. Sometimes I lay in bed at night and just dread the next day because of feeling afraid of the very real possibility that I will have to cancel everything that I have planned, call in help with the kids, and stay in bed. It is very tough to stay balanced, positive, and embrace momentum when you have this potential looming of everything changing so quickly. I do know that we all have unpredictability in our lives, this is just so consistently inconsistent that it is hard not to live in fear.
I have not said this to anyone other than my husband but this lifestyle has triggered quite a few phobias for me. I have to fight with them/against them every day throughout the day. I have phobias of making commitments because of knowing that I may have to back out on a moment’s notice. I have phobias of talking on the phone and scheduling meetings because they tend to take so much energy and I very often only make it through the beginning portion of this kind of communication before my fatigue kicks in so heavily that putting words together becomes very challenging. I have phobias of any sort of conflict. I’m sure some of those phobias were there before I got sick, but now things as simple as exchanging or returning something at the store can become something that I put off for months because I am afraid I won’t have the energy to get through the line and still deal with the situation at hand. Of course this translates over to personal conflict as well… Also any medical appointments for me or the kiddos has become something that I avoid and put off for the same reasons. The drive there, the paperwork, the wait, and then possibly the experience of coaching the kids through the experience is so intimidating that I feel very afraid of having to back out before I even get there. I push myself to face these things each day on some level. I have not truly allowed them to take over, but it is as if I am constantly in very uncomfortable territory… which I guess is not necessarily a bad thing, but is pretty exhausting.
I get resentful of the fact that I have to spend a good part of the day resting. I want a “normal” schedule!! I often take personal responsibility for the limitations that I have and feel like I am failing a fight when I have to lay low. Today I tried to get up early and just push through, instead of resting as I normally would, and wound up physically sick and throwing up because I was too tired. So back to bed for a few hours…I know on an intellectual level that I cannot control these things and just “discipline” myself through them, but on an emotional level I struggle every day to keep a positive attitude and not feel angry with myself for “giving in” to these limitations. I hurt from head to toe today. On a scale of 1-10 my pain is about at 6 or 7. I know it will pass. I know better days will come or that it may even all disappear this afternoon, but I just needed to take a few minutes to say that it sucks, I hate dealing with this, and I want it to change!
Alrighty. This was my 5 minute tantrum, and I am moving on with my day. Gonna be a good day.
I think I can, I think I can… 😉