Nobody Knows…

Nobody knows…

Today was a horrific day. I spent the morning at the hospital with my dad, having his testing done. Apparently they found something and it had to get checked out. Like today. Not tomorrow or next week. Today! I was so pissed. But luckily, I was able to squeeze in my therapy appointment, though we again just talked about how my father takes up so much of my time and that it is not appreciated, at all. And I still got to finagle getting medical records from one hospital to another. I don’t know how I am going to do this, as I know my father needs to sign his release form. I can’t do it. It’s not my records. Which means I got to drag him to get the forms released. And I have a week to do this. Talk about pressure. But I think I can talk my sister into it. He has another lovely appointment on Tuesday and I don’t have to be apart of it. I just get to hear about it.

I had about a half hour before I had to go to South Station to meet up with my friends for dinner. It was a race to the bathroom soon as I got off the bus. Both bowels and bladder decided they were going to race me to the bathroom. I lost, they won, though I didn’t realize it. I thought I had just peed myself but the second race on the way home proved that I was wrong. I changed my underwear, washed up, and now I am typing this blog because no one will fucking care that I crapped and peed my pants. The only ones that will understand are those that suffer from CES, or some other neurological condition that affects the bowels and bladder. I think MS might affect both, but I am not sure.

Nobody understands what I go through on a daily basis. No one stops and thinks that I am disabled. No one enters their mind that I might be in too much pain today to do something. Nope, they just want ALL of me there, right now, right away. Even my therapist doesn’t get it. She could have cancelled the appointment today but instead she kept it. It would have been a weight off my mind so that I didn’t have finagle the bagel to find a spot to talk to my therapist, and then keep my voice low so that people are not hearing what I am saying. I don’t know what I wanted to talk about with my therapist but I know I didn’t want to talk about my father and how he is making me lose spoons I don’t have.

I should have canceled my dinner plans but I am stubborn and I wanted to see my friends’ kids. I haven’t seen them since January. Now I am hurting and frankly, I don’t care. I am not doing a damn thing tomorrow except to eat my fettucine alfredo with butternut squash and chicken. I also have bruchetta and garlic breadsticks. I will have a good lunch tomorrow. And besides, if I didn’t go out, I would have missed the free pasta and tomato sauce they were giving out when you exited the train station. My mother is going to like that, the pasta anyway. A free box of 32 oz. will last us a good while.

But nobody knows that I lost all my spoons today and more that I cannot reclaim. I am in the negative and even though tomorrow I might be eating a good meal, I won’t be able to do much else. Which further adds to my depression. Nobody will know that I messed my pants. Nobody will know that on the way home, I almost couldn’t make the last block. My leg just had enough. But like everything else in my life, everything gets dumped on me when I can barely lift it. I am just so tired of it all. I am tired of crapping and peeing my pants. I am sick that I have to wear diapers if I want to go out of the house for more than 4 hours. And I don’t know where I am going to the money for diapers. It’s not in my budget. I still have two medications I need and I don’t know where I am going to get the money for them.

Nobody cares that my blog can be crap at times, that my writing is just isn’t good enough (by my standards). I am just sick of all the running around and not being appreciated for it. I am sick of being in horrible pain and not having a rest day in between. I am sick of being in pain, period! And nobody cares.

Totally out of spoons

Totally out of spoons

I am so spent. I did too much today and now I am paying for it. I just had my meal, a bowl of cereal. Now I can hopefully relax as I am hurting.

I had to do some stuff for my father, surprised? Tomorrow I get to do the same things I did today, minus going to his house. He must have called me like 6 times today. He is in pain and the medication doesn’t seem to be working. I told him he can take two medication but he refused. Let him be in pain then. I am tired of dealing with him today. Tomorrow he will be seen by his doctor and hopefully they can give him stronger pain medication. I don’t care about that right now.

I have to conserve my energy (spoons). I have a long day tomorrow as I have to deal with my father and then I will be going out to dinner with some friends in the evening. At noon, I am supposed to have therapy but I am not sure I will be home for that. I haven’t quite decided what I am going to do after my father’s appointment. I know I probably will go home so I can rest, but it all depends on what time the appointment ends. I hope that we aren’t there all morning. That will just suck.

I was not in a private space to really talk to my therapist today. She kept going on about how many spoons I have lost even before I went to see my father today. I had a productive morning, all with no coffee on board. I was hoping to have a cup when I got to Starbucks. But for whatever reason, the coffee sucked today, even the blonde roast didn’t taste right. I wasted my money today for the first time. I am so disappointed. I hope tomorrow is better, I am going to need the coffee to get me through the day.

My therapist was funny today. She called me a geek and I think complimented me on being very “Bostonian”. LOL I guess I said “wicked” too much today and it just got to her. I was glad for the light conversation, as like I said, I wasn’t in a private space so talking about my suicidality or self harm urges were out. I actually haven’t had any urges to cut since Sunday. We however briefly, talked about it today. I some how developed a pimple on one of my scars and it was triggering me to cut. It was very itchy and course, when I popped it, made it really angry. I really thought about cutting for the first time in months. I kept thinking about how to make the scar “better”. I know this doesn’t make sense, but it really was how I was thinking that day. I almost had to call her Sunday to talk me out of it or to contract for safety.

I am looking forward to going out to dinner with my friends tomorrow. I am going to go even if it will kill me. I will just bring my cane and I should be fine. We are going to go to one of my favorite restaurants so I really don’t want to miss it. Plus, I haven’t seen my friends all year because of my stinking pain. I don’t see them often. The last two times we were supposed to meet, I couldn’t go because I was on bed rest. I really am looking forward to seeing them, we have a lot of laughs. So even though it will hurt me, I am going to see them anyways. I will take my pain medication with me just so that I can mingle. Luckily, there won’t be too much walking involved once we get there. My friends live south of Boston, almost near the Rhode Island border. I have to take the commuter rail to get there. I am going with my friend, who cordially invited me and will be treating us to dinner. He does this at least a few times a year, usually when it is my friends’ birthday. He is nice like that.

I think I am going to have to take a strong medication to kill this pain that I am in. I have been at an 8 on a scale of 1-10 for the past hour or so and obviously, my regular pain meds aren’t touching it. I didn’t think they would. I just did too much today. I was on my feet for more than 20 minutes, I walked long distances, and generally ran out of spoons by the time I even got to my father’s house. And there was one errand that I forgot to do, and that was mailing my therapist’s letters. Totally forgot to grab the envelope before leaving and didn’t remember until I got to Starbucks. I’ll have to remember tomorrow to do it because the rest of the week I will not be leaving the house. I need to recharge my spoon counts.

managing out the window

Managing out the window

The other night, I was having a bad night of pain. I kept texting my therapist that I was having suicidal thoughts of overdosing on my pain medication. The pain was driving me to my wits end. But I some how got through that night.

Today I am in the same spot. I am in pain but am not quite suicidal. I am, however, fighting a migraine that is affecting my vision. AND sounds are bothering me big time. Like my mother who is in the kitchen, playing her dice game. It is annoying the shit out of me right now. I want to scream at her for not watching TV. I rather hear the sounds of the television than the dice game. Plus, to make matters worse, we have a glass tabletop so that just echoes the sounds through out the house. I swear because my mother is deaf, she doesn’t realize how loud she is playing.

I didn’t do anything today. I have been very sleepy for most of the day. Probably because my sleep has been interrupted for the past two nights. Again, all because my father wants attention. Today my sister called me and because the idiot doctor didn’t put her credentials on the prescription, we can’t get it filled. Now I have to call his PCP to see if they can send him the medication. I doubt they will send it off without being seen. And I don’t know how I am going to get him to the doctor’s when I don’t have access to a car. UGH, this sucks.

What sucks more is that I am supposed to be working on this book that I am co-writing but I have no idea what I am going to write. I am feeling pressure to write and the material is there, I just have to focus. But the focus is not there, making it difficult to write. I wrote a page last night but I feel like it is crap. I have to work on it a little bit. Or a lot.

Right now I feel like a fucking cow. My stomach is all bloated for some reason. I feel like the fat around my midsection is strangling me. I hate feeling this way. I never felt like this before, but then, I have gained so much weight the past few weeks. I know it is because of my depression that I have gained weight. Plus, it is not like I am really active with my ankle being sore. I have been a lump on a log, just eating and eating. I don’t know how I am going to manage to keep the weight off when I am so depressed. And I am in so much pain, that I don’t care. It’s a bad cycle.

I had therapy today and my therapist suggested that we have another crisis response plan specifically for my pain cycle. That I should do something other than stare at a bottle of pills. I didn’t do it on purpose. I just happened to count how many were left in the bottle. Then I calculated how much medication I would be ingesting. I don’t think the odds were in my favor. Plus, I really wanted to go to my reunion and I think that saved me from taking the pills. But the texts scared my therapist. I guess I was in a bad place looking back. But when I was in that moment, all I wanted to do was end the pain. And if my life had to end too, I wasn’t going to fight for it. Luckily, wanting to see my friends from the past overtook my desire to take the pills, this time.

in so much pain

I don’t normally write these types of blogs. But dammit, I am in so much pain that I just don’t know what else to do but write. It started when I got home from my appointment, around 3 pm. I didn’t walk too much, except to get my haircut down the street from the hospital. I just don’t know why my pain meds are failing me. Usually they work and I should be sleeping by now. I am listening to music to distract myself because I am staring at the bottle of my pills and thinking about just emptying it. It will harm me, there is no doubt. Might even kill me as I took my night meds as well. I just have to get through the next hour so that the meds can work. I have tried going to sleep or snoozing but I just can’t get comfortable. my foot is throbbing so bad.

I really want to talk to someone yet i don’t. I have had enough of trying to talk to people today. If my psychiatrist doesn’t get it then I doubt anyone will. I just feel like no one believes me anymore when I say that I am in pain. Course I act like a “normal” person. No one can see the hurt. No one else feels the hurt. I don’t even have a limp. I might drag my foot but that would be it. But right now, I am not doing anything but sitting on my bed, having my foot up, resting as comfortably as I possibly can. But it’s not enough because I am still in pain. My foot is not swollen, least not as I can see. But it hurts like a SOB. I really hate feeling like my world is ending because of this pain. I know it should be getting better but it’s not. It feels like it is getting worse. I have to wait two weeks for my new doc appointment to find out what is wrong with my foot. I bet you 100 bucks that they find nothing wrong with it! That will just about kill me, I swear. I see my psychiatrist the week before my appointment. I am going to tell her that if they don’t find anything wrong with it, I am done seeing doctors and I am done with life. There is no reason for me to go on if i am going to be in pain all the time. This just sucks so bad.

I don’t know what my therapist is going to say. I texted her that I was thinking of emptying the bottle. I doubt I will get a response. I never get a response from her. I get frustrated with her, too. I am just in agony and no one knows about it, except for you, the blogger world and internet. But will anyone care that I am in horrendous pain? I doubt it. I am just so tired, exhausted, of dealing with this pain all the time. Sure it is worse at night. At night I battle it more. I don’t know why that is. No one knows why that is. I guess because I am at rest? but that doesn’t make any sense! I shouldn’t be in pain if I am at rest!! I should take some neurontin. Maybe what I am feeling is nerve pain, not physical pain and that is why the pain medication isn’t working. I don’t know. I really don’t want to get up again to get more pills. I am tired of taking pills. I take so many pills for different conditions. One for this, another for that. It is so redundant. Yet without these pills, I can’t function properly.

I don’t want to die right now. Yet I don’t want to live either. It is such a conundrum. I just want the pain to stop. I don’t think that is too much to ask for?? I really feel like no one understands the pain that I am in. If they did, they would try and help me more. I get to see one more doctor for the same condition that i have had for the last three years. I thought that the AFO would have helped me but no, it is making things worse. Yet if I don’t walk with it, I am in more pain than without it. I know I am probably feeling sorry for myself. But if I don’t, who is?