Tears. And Fears.

IMG_2405.JPGI’m sitting on the sofa. Alone. Crying. It’s a grey, overcast, drizzly day – and I’m grey and overcast and drizzly, too. I should be at a funeral today. And here is another day where, even in death, I’ve let down another friend. Again. (Just to be clear, I’m alone because David is at work. When he’s here, he’s very supportive and understanding.)

I could be feeling this way because I’m an empath. I pick up on feelings around me and right now my universe is sad and gloomy and angry and unkind. That’s part of it. Another part of it is that I’m just off another night of not being able to sleep. Some nights, it takes a while to get to sleep. Some nights, it takes time to get back to sleep. Last night, I didn’t get to sleep until after 3. For a variety of reasons. So this morning, I stayed in bed. Slept until noon. Couldn’t have made the drive to Toronto anyway. And part of it is because I hurt. Right now, it seems as if I hurt everywhere. Let me take inventory. Neck. Shoulders. Back. Arm. Jaw. Knees. Throat. Ears. Feet. Gut. Other side of gut. Butt. Teeth. Lungs. Chest. Head. Surely there is some part of me that doesn’t hurt? Doesn’t ache? Isn’t numb? If there is, I don’t notice it because the other hurting aching numb parts are overwhelming.

As I sit here, I think about how I’ve let down so many friends and family members. By not being able to commit to getting together. By not feeling like getting together. By being tired of always answering “how are you” with “not good”. By forgetting birthdays and missing special occasions and just not having the energy to deal with any of it. And that spiralling depression that comes with chronic illness. Not wanting to subject people to that. And some people not wanting to associate with me because of it. I’ve lost friends. I don’t know why, but I suspect it is because of this. Family members shut me out. I don’t know if it is because of this or for other reasons. But whatever reason – it all plays into feelings of loneliness, isolation, sadness, unworthiness. And all of that affects how I am feeling, causes this disease to continue to rear its ugly head and send me down another spiral. It is a vicious circle.

I also have some wonderful friends who get it. Who support me and listen to me and don’t keep score. David is definitely at the top of my list. I’m so blessed that we are partners. In life. In love. In sickness and in health. Definitely for better or for worse. I have other friends who get it, too. My dear friend who send me recipes and doesn’t keep score about how long it is between visits. Who checks what I can eat when we are getting together. And who knows that I do what I can. Another friend, now living in a far-away city who sends me notes and smiles and hope. Who is always upbeat. But understands that I can’t always be. On-line friends who send me encouraging notes and say kind things about me. People in the support groups – for Crohn’s and colitis or Entyvio (one of the medications I take). The dear person who works at Mt. Sinai and reaches out to help me find a better doctor and more answers. The dear person on the other end of the phone or email from the drug company who listens to my frustrations and offers suggestions. Bless all of you. And thank you. This is what keeps me going.

As I sit here, I reflect (once again) on all the time that I have wasted during my life. And the energy that I have wasted. I expended so much energy on my jobs when I was working that I wore myself out. And it feels as if I used up my allotment and have nothing left. Getting dressed is a chore some days. (Yeah – I’m still I my pajamas right now and it is 3:45.) When we had Hazel, taking her for her walks took all my energy on some days. Doing dishes or cleaning or cooking or … can take all my energy. Again, David is wonderful and does so much, but that is a struggle as well. Because I need to feel as if I am contributing and helping and part of the household. I have to constantly remind myself to do what I can and let the other stuff go. But there is so much that I want to do. And so much that I’m afraid to even try.

I’ve started crafting and want to try selling some things. But some days, I can’t even come up with the energy to make anything. We have a craft show that we signed up for next month and I have to get stuff done for it. And I’m afraid to be there – is there a bathroom nearby. What if I’m too ill to work there that day – how is that fair to David?

I want to work. I should work. Since we aren’t on our sailing adventure, we need to be bringing in money. But what can I do? I can’t work retail because that doesn’t allow me to run to a bathroom whenever I need it. I can’t work in an office environment like I had before I “retired” because the stress would totally do me in. I’m not good at working at home on my own. That’s been proven over and over. So I don’t even know what to do. And I don’t have the energy to figure it out or make it happen.

I want to travel. But even a drive to the grocery store fills me with dread some days because I don’t know if I can make it. Where is the bathroom? Is it going to be in use? Will I be able to wait until it is available? I have days where I can’t even make it from our living room to the bathroom in time. At least that’s in private where I can shower and change my clothes. Public is a whole other stress.

I used to consider myself to be a positive person. Able to spread sunshine and see the silver lining and find the gratitude in any situation. I’ve lost that person. And it feels as if I’ve lost that ability. And that makes me sad. So I cry for that. And fear for that, too.

It is a tough day today. I haven’t eaten yet. Because some days, I’m afraid to eat. I know some foods that set things off and make things worse. Sometimes I’m determined enough and strong enough to avoid those foods. Other days, I just don’t care anymore. I don’t have the strength or the willpower to stick with it. And some days, I just can’t be bothered trying to figure it out. It’s sad and scary when food that is supposed to sustain us and give us life can cause so many problems and even kill you. Very sad. Very scary.

So today, I sit on the sofa. And cry. Say good-bye to my friend in my own way – the way that I can handle right now. Thank her for her friendship. Apologize for not being a better friend. And determine to try again tomorrow.




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