Category: chronic physical pain

Saturday Blog 07052020

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Saturday Blog 07052020

I am feeling really depressed today. I have no energy to do anything. I feel like I should make some progress in my room so I might do that after I write this. My back has not cooperated much in standing so will be interesting to see if moving shit around causes it to flair up some. I got Matt Stell’s song “Everywhere But On” in my head so I got it playing on repeat. It is true as I have moved everywhere but on. I might share it with my therapist. I think she likes country as she was excited Zac Brown Band is playing at Fenway. This is the third or fourth year they have played there. I am not that interested as I think a ballpark should just play baseball. I hate it when they set up the stage and stuff. I just cringe. Maybe it is just me.

I sent a message to a reader because I haven’t heard from her in a while. She is doing okay but is really depressed. She is struggling and I felt her pain. I feel bad that people suffer from pain. It truly sucks when you hurt for more than a few weeks. It is like the pain will never go away. I have been trying to figure out if I will get pain relief when in the hospital for my CRPS pain and no one has been giving me an answer about it. The NP had said that if the pain medication the neurosurg team were giving me was not adequate they would consult the pain team and they are “top notch.” I am just worried they will only treat my post op pain and nothing else. I will be on my back laying flat and my legs will be raised so I am glad because my foot won’t tolerate being flat. It has a difficult time when I lean back and put my legs out. It will flare up in a few minutes but soon as I lean forward again, the pain dissipates a bit. It is still there but I don’t feel it as much.

Today is the anniversary of when I started therapy with the school counselor. I remember it was very difficult to open up about stuff and the voices were making things so damn difficult but I couldn’t tell anyone that. It was my secret and I knew people would not be welcoming with this news. Therapy only lasted until the end of the school year and then I saw a social worker for a year before she left after she got married. The other therapist I fell in love and felt she was just seeing me for my insurance money. Also felt like she took advantage of me because she knew I loved her. She wanted me to go to Northeastern just so I could continue seeing her. I had plans on going to Maine for college. But none of those dreams happened because two months after I graduated high school I ended up in the hospital. So by the time I finished high school, I had three therapists. I would have another 8 before I found the one I had for sixteen years. I would have one more then another a year and half later. I have been with my current therapist for eight months now.

Got a week and a half before surgery. I am so fucking nervous it is not funny. A friend that I saw back in one of my hospitalizations wants to see me as my sister is not going to stay with me. She will be there for moral support. It is up to her if she wants to. I won’t say no. I appreciate it as my nerves will be through the roof.

Wowsers

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Wowsers

Yesterday I was prescribe the bladder medication tolterodine. The pharmacist said to take it at supper time as that would be best so I took it when I got home as it was supper time. I have been feeling dizzy since. I am hoping with continued use the dizziness goes away. I just hope it doesn’t make my constipation worse. But wowsers, is the world spinning on me! I took my blood pressure early this morning and it was low. My pcp had said that after taking all my medications, my blood pressure could drop. Well it did. Whether the low blood pressure and dizziness are related I am not sure. I looked at side effects and apparently, nortriptyline and this med interact with some cardiac side effects. I got to watch that out. My psychopharm doesn’t want me using Zofran too often as it can lead to serotonin syndrome so fuck. All the side effects are similar so I am not sure when what is what. She gave me a list of side effects so if I get them all at once then I know it is the syndrome. I feel so taxed trying to remember everything plus keep track of my bladder and bowel movements. It is stressing me out. I plan on trying to clean my bowels up before surgery so I am not so constipated. My biggest fear though is pooping in the OR while I am under anesthesia.

My mother wanted me to go out today but I told her I wasn’t. I am not feeling up to it after my long day yesterday. I need to rest. I am still not feeling up to par from the side effects of this medication anyway. I feel so drowsy but then I was up almost 20 hours yesterday on 5 hours of sleep. I really didn’t sleep well as I kept waking up to pee. I had to set the med alarm at like 4 this morning because I didn’t want to sleep through with a full bladder. I have it set at five hours intervals, which is roughly the time it takes to cath five times a day. The uro NP wants it less than that but sometimes it is less than that because I could go every three hours or so, especially if I am drinking a lot. She wants me to increase my fluid intake by drinking 16 oz first thing when I wake up. That is half a bottle of Gatorade. I am going to go through a lot of Gatorade so I think I am going to order more next month. Just sucks that I can’t order a large quantity of the same flavor because lemon-lime is my favorite flavor. I get a warning when I am over 10 bottles. I usually order around 25 bottle and then 5-10 of a different flavor to break it up a bit.

From Chronic Pain Info page

by Midnight Demon, posted in Chronic pain, chronic physical pain, CRPS, depression

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.

heaviness continues

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

Heaviness continues

I reluctantly went to my psychopharm appointment today. My ankle/foot flared up just before I had to leave so I really didn’t want to leave the house. The pain sort of got better with me moving but soon as I got near my house, each step was agonizing. I could barely make it up the stairs. My legs feel heavy and the feeling of walking in mud has been going on for more than a week now. My psychopharm wants me to think about ECT as this could be depression. Could also be medication related but don’t know. I have been taking the medication late in the afternoon when I am home in case it makes me so drowsy I need to sleep. If it keeps me up at least I will have my night meds to bring me down. We talked about upcoming surgery and how nervous it was making me. She will be having some kind of surgery in the middle of April so I don’t know if I will see her. It all depends on how well I recover and if I am up to seeing her in person. We have been conversing via the patient website thing so we may have to do that until she returns. I am not sure if someone will be covering her while she is gone. I forgot to ask.

The voices have been quiet since the medication increase, though as I told my psychopharm, it is a little too quiet. I am having some difficulty functioning as I just feel so down and my cognition isn’t there. She isn’t sure if it is depression making it this way or not. That is why she either wants to change antipsychotics and have me start ECT. I probably wouldn’t be a candidate now as I am facing surgery in two weeks. She wanted to start the process and I told her no. I am not ready. I am going up on the antidepressant and antipsychotic so would like to see if that changes my mood. If the antidepressant makes me sick, then I will think more of ECT. I will be out of choices for meds if this fails, either on its own therapeutic level or me having side effects.

I am feeling depressed because right now I am in a lot of pain. I honestly don’t want to keep my appointments tomorrow but I already skipped my uro appointment two weeks ago. I don’t want to miss it again. It is with the nurse practitioner who does the catheter stuff not my urologist. I don’t have an appointment with my uro on the books. I need to make one probably after my surgery to see how things went. She said she wanted to redo the urodynamic testing two months after surgery to see if there is changes. Maybe when I call to make the appointment I will ask about the testing as well. I know they can be pretty booked. My urologist thinks I may have some function return after two months post op. I hope so. I hate thinking I am going to cath the rest of my life. It is too depressing to think about.