From Chronic Pain Info page

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 –

  1. You don’t need to live the rest of your life all at once. You only need to survive this minute, this second.
  2. 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.
  3. 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.

  1. 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.
  2. 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

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

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.

Tales of the Midnight Demon

I’ve pretty much have been in a flare the whole week. It has been go go go past few days. I was supposed to rest today but I stupidly ordered my groceries to be delivered today. I had used a different app, which I will not use again because of the 20 items I ordered, 13 were delivered, 1 item was supposed to be refunded but was substituted to another similar product I don’t like. So I have 3 bottles of Starbucks dark roast coffee. I will try it. If I don’t like it, I guess I will dump it. I have no use for it and no one else like Starbucks coffee.

I did an errand after my deliveries were put away. Got annoyed with the bank my mother uses. Every single time I go, there is a problem even though my mother put my name on the account. I hate this bank so much! Then I went to pick up my meds. I had to make two trips because one was ready and the other had to be pre-authorized by my insurance.

I came home from the 2nd trip and immediately in a flare. Both times I did not wear my AFO brace. My leg, which has been acting up lately, got really painful on my walk to the pharmacy and only got worse on the way back. I was in such a flare up I couldn’t bear to listen to sounds. This meant I couldn’t distract by listening to music. I just rested in agony. I took my pain meds and some gaba. I stayed on Twitter for most of the time trying to distract. I was also on Facebook. Nothing was helping the leg pain and I knew it was from walking too much. I must have walked miles in my house, going from my room to the kitchen to the living room and back to kitchen thousands of times in the past few weeks. I am not walking correctly. I overusing my leg muscles as well using muscles to compensate for the overused muscles. Only way to remedy this is to completely stay off my leg. This is hard to do because I cannot stay in bed. If I don’t feel well I can but I need to have coffee and eat so need to go to the kitchen as well use the bathroom. Now I really need to limit going downstairs.

As I was resting and keeping track of the game, the extreme suicidal ankle pain exploded. I so overwhelmed and intense suicidal ideations occured. I wanted to end things tomorrow (today). I was thinking of emailing my psych to tell her I’ve had it but decided to call her instead. I paged her and she called me back right away. We talked and I told her how dire I was feeling. I told her I had two suicidal pains around my ankle, one worse than the other. The worst one was why I was calling. She asked if I was going to act right away. I said no. She asked if I needed to be picked up and I said the ER is not what I need right now. We talked some more about the new med changes and how it will be a few days until I know if it helps or not. One dose isn’t going to help, though it sort of did. I told her I didn’t think I was going to be around for my niece’s graduation party. She said we will take it one day at a time. Then she said I needed to call her when I got up. So before noon, I will call her, if I am up. I said I would but it is almost 3 am so is probably doubtful I will.

My foot has been doing the dystonia thing again. It is part of the reason I am still up. The area where the extreme suicidal pain is still hurts but not as bad. My foot has swelled up pretty good where it feels like it is going to burst. My veins have popped up giving my ankle a bluish hue. The ankle bone is also been hammered by unknown entity. I hate bone pain so much. I’ve taken two doses of gaba. I am contemplating taking a third. If I am still up around 4 am, I will.

Today has been such a shitty day and is not over yet. A friend wanted to give me tickets to the Sox game last night. I was in a major sensory overload flare when I was asked and I had to decline. I really hated doing so because baseball is my love. But I knew walking to the park and finding my seats and staying for a minimum of three hours would really kill me after having a nasty flare up. I made the right decision and my psych agreed with me. She was saying no, no, no which was basically doctor’s orders. I am under her clutches again and I fear I am going to burn her out. I am so suicidal and want to fucking act but like I said in my previous blog, I don’t want to do it in my room. I was thinking of doing it Friday but it is going to fucking rain again. Fucking weather. Being pissed off about this is not helping. My psych asked if I was going to act in the next few days and I told her it was a coin toss.

I honestly have no idea if I am going to survive this year. I got the impression from my psych and I think I heard her say not on her watch or something to that effect. What the fuck is wrong with me? Why can’t I fucking go through with my thoughts?? I feel like such a fucking wimp. I am so annoyed with myself. If I loathed myself before, it is 100x more.

My psych is going to try her damndest to keep me here and I don’t think pushing her away is going to work. I told her I only called her because I knew if I emailed her, she would call me. I really needed to talk to her or someone, well someone that i trusted. Right now she is the only person I do trust. I can’t risk telling someone else my dark thoughts. They will freak out and things will be bad.

I am falling asleep so will end here.