Since Wed’s appointment I have been feeling exhausted. It was a long test and not much came from it except that the doctor switched alpha blockers. I see the NP in a month to see how things are going and if I am voiding. She was very worried about me not going for 18 hours and had me promise to cath if it should happen again. My legs have been sore the past two days and it has been hard to walk. I need to take a shower and haven’t had the energy to. I also need to shave. I got my haircut on Wed and have not taken any selfies because my hair isn’t spiked like I want it. Yesterday I was supposed to get the vaccine but I was just hurting too much. I didn’t sleep because of shoulder pain and my legs were horrible. I just wanted to rest in my bed. Today I had groceries delivered and that took a lot out of me. I was able to take a nap. My appetite has been low the past few days. I have been eating but very little. I had my biscuits with my coffee today and just now had a bowl of cereal. I think that is all I am going to have today.
My neck has been awful all week. I canceled PT yesterday because I hurt too much with my legs. I hated doing it but walking hurt so much yesterday. I am in a lousy mood. Surgery didn’t help me like I thought it did and that is really hard to take. I had a hard time emptying my bladder. The stress of the test left me feeling really tired. I sent a message to my uro to find out if it is the same thing that is wrong, that the bladder neck muscles aren’t working right. I told her I was thinking about botox. I just wanted to research it a little before I said yes.
I had groceries delivered today and then when they were in my room, I just collapsed. I was able to nap for a couple of hours. I need to shave and shower today but I don’t think it is going to happen. My legs just feel really sore. Even though I just woke up from that nap, I feel another sleep is needed. So I probably will be taking a nap before I go to bed for sleep. I don’t care. I am just so bloody exhausted I can barely keep my eyes open. My mother just called to say dinner is ready. I am not hungry so will pass. I just want to lay down and sleep.
Got this from Chronic Pain Info on FB. Thought I would share it as I know some of you struggle with chronic pain.
Things to consider if you’re overwhelmed by the thought of being sick or in pain the rest of your life –
- You don’t need to live the rest of your life all at once. You only need to survive this minute, this second.
- Pain is just one component of your experience. It influences, but does not define who you are, the good you can do for the world, the things you can accomplish, or the joy you can feel.
- It’s ok to be scared or angry about the future. Your feelings are never wrong, and there is nothing wrong with you for having them. But you can question the thoughts behind them. Illness is very unpredictable, and things might be better than you expect.
There might be breakthroughs in treatment of your condition. Medicine is moving really fast, and there are even drugs being developed that treat the underlying cause of genetic illnesses, like one approved for cystic fibrosis this year.
There might be a breakthrough in management of your condition. Pain management is a relatively new field, and is quickly improving. Pain, recovery times, and outcomes from things like surgical procedures are getting better quickly.
You might have a personal breakthrough. Maybe you get a new (correct) diagnosis that leads to better treatment, have success with an existing treatment, or identify a trigger for existing problems. Maybe a brace or mobility device you haven’t tried reduces your pain level and gives you new freedom. Maybe it’s a combination of lots of things, each helping a little bit.
- Your perspective and ability to handle your illness might change dramatically. When I got sick at 17 I found it intolerable, and dreaded living the rest of my life that way. Today I’m 21 and feel SO differently. I still have pain but I’m happy, I enjoy myself, I love my life. Many things get easier to handle as you mature, and we are resilient creatures. Things won’t always seem this hard.
- Try to turn your fear into savoring what you still have in the present moment. If you fear losing the ability to do or enjoy something in the future, trying to really savor it now. Don’t let your fear of losing it in the future keep you from doing it now. Create lots of good memories for later. Focus on your gratitude for still having this thing. Really enjoy all the little details when you’re in the middle of it.
Saturday Blog 15062019
Microsoft word updated and I hate it. The things are now on top and below it are your recent documents. I am sort of getting used to now. But every time I open it, I am like WTF.
Today was the first day since Tuesday that I feel awake. I was up nearly 30 hours and slept most of Wed, Thurs, and Fri. Yesterday I couldn’t get going at all. I just felt so damn tired. I hardly ate the last few days and drank little. So today when I got up, I had coffee and then left to go to the grocery store to buy my Gatorade as I was down to my last bottle. I was stupid. It is hot out and I was already dehydrated. By the time I got to the store, I felt weak. I quickly did my shopping and left. I drank half a Powerade while waiting for the bus. Some guy sat next to me and was on his phone. He then turned to me and asked where he could apply for a job. Seriously? How the fuck do I know?! The bus came and by the time I lugged the stuff up the stairs, I was toast. My stiff right calf muscle was hurting me. I rested a bit and then chatted with my nephew. I am kind of worried as he has these kind of grandiose ideas. I am not sure how he is going to go through with them. I support him no matter how hair brained they are. He needs to make and learn from his mistakes. I just hope he doesn’t get in way over his head.
After I finished talking with him, I then lugged the stuff up to my room. I collapsed on my bed and my right on cue, my ankle flared up big time. I took my meds and waited. I hadn’t had anything to eat at that point. I am out of pop tarts and the usual stuff I eat. I wasn’t able to buy groceries this month due to trying to catch up on bills. I was in the hospital anyway so couldn’t order them. By then it was too late as I had used my money for ordering Starbucks. One order they fucked up on by going to a different coffee place all together and I never got a full refund for the order.
Past two days, I have woken up with a sore throat. It gets better until I start talking and with my hard of hearing mother, goes out frequently. It still isn’t up to par right now. Today the soreness is still present. I am not sure if I got something or it is voice box changes. It happened two weeks ago when I had my last shot of T. It only lasted a day then. Hope it is better tomorrow but I did a lot of yelling as my mother couldn’t hear me otherwise.
I am so fricken exhausted. My pain levels are so high right now and I feel like I could just pass out. I am going to close here for now. Just hope I can sleep tonight without too much pain.
2019May13 Misery and Insomnia Continues
I barely slept last night. I was up till around 0530 because my ankle decided to go up to a level 12 at midnight and stay that way most of the night. It went down to an 8 when I woke up around 10 but after I brushed my teeth, made lunch, washed my dishes, and folded my bedding, pain shot back up higher. It is now around a level 13. I am so disgusted.
I was so frustrated and had bad urges in the early morning hours. I was in such despair. I realized around 4 am that if I go in the hospital, I am not going to have my meds at my bedside. I would have to walk to the nurse’s station to get meds and then walk back to my room. Walking is not a good thing when you are in a fricken flare. So I emailed my psych this and haven’t had a response. I sent her another email asking her if she is going to force me in the hospital. I am done with messaging her today. Either she responds or she doesn’t. I told her I can talk to her tonight or tomorrow, or the rest of the week. I don’t care but I am not going in the hospital. It isn’t like being on a psych unit you have a call bell to have the nurse come to your room. And because the nurse needs to scan your wrist band to give out meds, it is just not a good situation for me.
I am fricken exhausted. Past two nights I barely slept more than 8 hours. I am running on fumes. I had coffee because I needed it. I hate this is another day of not being able to do anything in my room. I haven’t done my PT exercises and don’t care to. I have been doing the calf thing trying to get it loose. I have not used the new band for the foot exercises. I am just so frustrated I don’t want to do a damn thing. I have been doing the foot thing where I am trying to get my foot to be flat. Because my calf is tight, my foot is always bearing on my toes rather than be flat. I have been this way for years so I don’t think that is going to change. I tried it while I was on the bus and train Friday and it was killing my muscles. I am just not used to it. I try and hold it for a little longer.
My psych just responded and wants me to call her tonight or tomorrow morning. For some reason I am scared. Even though I have known her more than half my life, I always fear she will throw me in the hospital and throw the key away. I know this irrational. So I will call her later. Rather face the music today than tomorrow. I will be a nervous wreck if I wait till tomorrow morning.
To the person who commented on my blog yesterday, I hope you are feeling a little better today. I know you are probably hurting a lot. You will get through it even though it might seem impossible right now. Hope you are continuing to read my blog so you see this message.
I took some gaba to help with the pain. Not sure that was an good idea if I got to talk to my psych tonight. Last night I was a little dissociative before trying to sleep at 130am. I have been doing anything and everything I can to control the pain. It most likely is flaring due to the weather. Temp dropped about 14 degrees last night. I so cold. I had to put another blanket on my bed because I put my fleece one in my bag I was planning to take to the hosp. I still am hoping to be a free bird this week. Not sure yet. Will find out when I talk to my psych tonight. Hence why I am scared. She very insistent Friday when we met. I know she is right but I am getting upset on how it will be and it hasn’t even happened yet. A friend said to “let it work” but I am very sure she has never been in the hospital recently, or at least where I live. If I had a therapist, maybe things would be better. The social worker got back to me about the therapist situation. Unfortunately the director is in Africa for a few weeks so she doesn’t know what is going on until he is back. Wonderful. Just reinforces the notion I am a hopeless case no one wants to take on. Other might be helped but after 28 years of getting help, it hasn’t worked out yet for me.