Tag: cauda equina syndrome

PT Blog

by Midnight Demon, posted in blogging, chronic physical pain, depression

PT blog,

I had PT today and she is really good. We talked about things like flares, positions that set off pain, etc. Today we talked about desensitization. She wants me to put something soft, like a pillow case or cotton ball on the areas of my foot/ankle that are problematic. I only put it on for a few seconds before moving on to another area. I go up and down, where I hurt and where I don’t and then move on to something else, like the smoothness of a plastic pen. She was really specific with me. I told her the area that I would have trouble reaching due to my range of motion due to my back injury and she said I could skip it for now. The next thing to move on after these items was a towel as that is a rougher surface. After I get used to this kind of touching (you need to do it, not someone else), the next step is to depress the item for a few seconds. If it causes you more pain or flare ups, DON’T DO IT! She stressed that for me.

She also went over the results of the Recognise app (found on Android/iPhone). It is a paid app but worth it. She said that at this point my brain needs to be retrained to distinguish my left and right. At first I didn’t do well as I thought I would for the basic test. I got better and she showed me how to change the parameters as I find it easy. It is a cool app and when I am bored I use it as well as a few other times a day as my homework. I strongly advise getting this.

I brought up some issues that I like to do, like standing more for 10 minutes in the shower or being able to make a small meal, like pancakes, without having to sit every few minutes. We went over my back injury and she wants to help with that. I cringed as anything to do with back exercises don’t usually work for me because it seems like I work on one set of muscles and another set goes off in rebellion. So either way I am in pain.

We decided to work once a week and if I need a break, that is okay too. I see her till mid November. I’ll let you know how it goes.

in my brain, dial it up, everything I want to say

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders, suicide

In my brain, dial it up, everything I want to say

I am totally addicted to “One Number Away”. It has been on repeat since yesterday afternoon. It touches me every time I hear it.

I am going through withdrawal symptoms from my pain meds because it has been 11 hours since my last dose. I have been sleeping all day so didn’t bother to take them when I woke up two hours ago. Sucks being dependent on a drug. And NO, being depended and addicted are two separate things. Being addicted means you need higher amounts of something to feel good. I don’t need a higher dose of my pain meds when I go through withdrawal. I just need to take the dose I take to get relief from the dizziness and lightheadedness that I feel. I almost fell backwards twice today. I thought it was because I am in Neurontin fog but now I think it’s because of the withdrawal. I have just taken my meds so I should be feeling better in about a half hour.

My mother is making dinner right now. Sausages and potatoes. I have a funny relationship with sausages. I like them but sometimes the taste makes me not like them. It’s weird. I’ll probably eat more potatoes than sausages anyway.

I made coffee but couldn’t drink it. It was making me more sleepy so I decided not to drink it all. I had wanted to change my sheets today but I’m not feeling up to it. I bought these clips to hold them in place. I just hope they work and don’t rip the sheets or slip off. I got them cheap on Amazon, just $8. A catalog that my mother gets had them for $14, but it was just 2 clips. I got 3 clips. I hope it keeps my sheet from coming undone after a few days. I hate having to fix it.

I got my suicide prevention shirt from the American Association of Suicidology. I hate not being a member anymore but the fees are too much for my budget, even as a fixed budget fee. I have Twitter to keep me updated on things as people are now posting on social media the slides and stuff at conferences. It makes you feel like you are there.

I’m starting to feel better now that I took my pain meds and ate a little bit. The sweet potatoes weren’t cooked but the zucchini she made was. It was a good dinner. I love zucchini with bread crumbs. She baked it in the oven so it was crispy. Very yummy! I hope I am able to stay awake for a little bit now that the withdrawal symptoms have passed. I try not to let it happen but I have no control over my sleeping pattern. I had woken up in the early morning and didn’t go back to sleep until 0700 then woke up at 1400. It was a good sleep. I hope that I will be able to sleep tonight. I think I will because I am still tired. I’ll change my sheets tomorrow. I really don’t feel like doing that task today. I need to clear my bed off and then take the sheets off. That is the easy part. Finding a place to put my “office” is always difficult. It’s not so bad as mostly it’s just clothes more than books and notebooks like last time. I’ll do it but I need energy and I just don’t have it today.

Eclipse 2017

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

Eclipse 2017

My sister was in the path of the eclipse as she was down in South Carolina. She got really cool photos, which were similar to those on Facebook and Twitter. I was in Starbucks and didn’t care much for it as there was overcast. I saw some guy in the foyer outside with the special glasses and did see things go dark for a little bit and then bright again. I stayed where I was inside the store.

I wrote in my journal as I was having my espresso. I didn’t leave as late as I wanted to as I got up around noon time. I caught the 1300 bus, which had some kind of idling or brake problem as it was making awful noises at each stop or red light. I had bumped into a family member while waiting for the bus. They are still contemplating therapy but is scared of being put in the hospital for “being crazy”. As much as I have tried to reassure this person that will not happen unless they are a threat to themselves or others, I still am not getting through. It hurts me so bad to see them suffering so much.

After I couldn’t write anymore in my journal and saw the loads of pics of the eclipse on Facebook and those my sister sent me, it was time to catch the train to see my therapist. He didn’t pick his nails as much today and was attentive to what I was saying. It kind of freaked me out a little because I was getting used to him being silent all the time. In the beginning of session, I had to hold back laughter as he was wearing cranberry pants. It looked totally ridiculous but whatever. Who am I to judge?

My ankle was getting sore on the way home. I caught the first train that came to the station and luckily, the bus had just pulled up. I didn’t have to wait for the 1730 one. I was looking forward to chicken cutlets but when I came home, I smelled stir fry. I was totally disappointed. I was a sweating mess and had to change. I made a dish and had supper. Then I took a much needed shower. I had wet myself and needed new underwear. I drank a lot of water when I came home as I was really thirsty and didn’t feel like making iced tea like I usually do. I’ll probably have to use the bathroom soon as water just goes right through me for some reason.

After the shower, my ankle was cramping on me while I was drying off. I was due my next dose of pain meds so I took them when I came to my room. Now an hour later, my ankle bone is being tortured. I fucking hate this shit. I need to be up in 12 hours, I’ll be lucky to get to sleep tonight. I’m glad I took a shower so I don’t need to in the morning as I have a feeling it is going to be rushed. I need to catch the bus in the opposite direction I usually take as I got to go to another train station to see my neurologist. It’s an appointment that I need to go to only for her to email my docs about her diagnosis of CRPS. I want her to do it in triplicate for my PCP so I don’t have to go to anymore new docs. I am just seeing the specialist and hopefully he won’t recommend me seeing anyone else because I’ve had it with the profession, except for my psychiatrist of course. I took a strong pain pill. Lord only knows when I will have a bowel movement. I thought it was going to be today but nothing so far. I really hope I don’t get hit tomorrow while I am out and about. I am about an hour and half away from home, 45 mins of which I am on a train the whole time. Just makes me nervous because my bowels can be unpredictable at times and when I need to go, I need to go NOW, there is no holding it in because of my nerve injury. I haven’t taken stuff to go because I am out and about. It is going to suck so bad when I do go. I am not looking forward to it.

feeling helpless and hopeless

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

Feeling helpless and hopeless

I went to bed late, after 0200. I wanted to watch a movie but Netflix didn’t have the movies I wanted to watch. They suggested others and I saw one that had Richard Pryor and Gene Wilder. I thought it was a comedy so started watching it. I don’t know how long I was watching it but it was dull. An hour into it and Richard Pryor still hadn’t made an appearance. I stopped watching it and went to sleep.

I woke up with a lot of Twitter messages about the therapist blog I wrote last night. A friend that I sent it to went on a string of messages about how to better treat people like me. He is the director of a behavioral health center in Missouri and he speaks about suicide prevention all the time. I also had a message from another Twitter friend that said she was going to use my blog as a Segway in her curriculum. I thought that was awesome. She asked if I was involved in NAMI (National Alliance of Mental Illness) and I responded that I wasn’t but I had a number for a therapist line to call but haven’t done so yet. I am still looking for another therapist because the one I am seeing, I am just not clicking with and it’s frustrating me.

I must have been up for at least a half hour or so, and then the pain started. Severe pain. It wasn’t even 1000 yet! I took my pain meds and some ibuprofen so my mouth wouldn’t hurt. I immediately felt so hopeless and helpless because there was absolutely nothing more I could do to help myself. I tried to go back to sleep but I was kind of angry this was happening. Then my mother called to tell me I had to make breakfast for my niece. WTF. I told her I was sleeping and she didn’t fucking care.

I had to go to Walgreens to get my prescription filled. My mother wanted some things as well as I saw a note on the kitchen table. I grumbled and basically told my foot I was going. I got dressed and went. I just realized now that I forgot to mail a card for my friend. Her birthday is tomorrow. I should have got a stamp last week when I bought it but I didn’t want to break a twenty dollar bill for 49 cents. I didn’t have any smaller bills on me. Now it’s too late and my foot is still throbbing so I am not going to go out again.

After my little nap, I had to brush my teeth and use the rinse as I didn’t do it in the morning. I took more pain meds, ibuprofen, and my antibiotic before I did because the rinse makes drinks really taste bad. My mother woke me up to find out what I wanted for supper. I told her I wasn’t hungry. I’ve only had a tuna sandwich before I left for Walgreens, nothing else. I didn’t even make coffee. Later I will probably order a pastrami sub and fries. I still am not hungry. I am in too much pain to care if I eat or not.

I had a notification on Facebook about a post in my Cauda Equina support group I belong to. I had posted my “knackered” blog and someone shared it with her daughter. She read the blog and said now she understands and she apologized to her mother. I felt pretty good that my blog touched someone and made someone realize what it was like with this crappy condition. The mother I think bought my book as well. That made my day a little better before pain wrecked it.

Sox are playing tonight. They won last night. Before I wrote the therapist blog, the score was 1-0, Sox. After the blog, it was 10-3! They ended up winning 10-4. I was like, I should write my blog during game times to see if they can win more games! I was excited for them. They turned their first triple play of the year. The young third baseman is on fire. He’s only 20 years old. Still a rookie but playing very well. I hope it continues. After the game, I was depressed as there was no more baseball tweets on Twitter. The feed was all about Cheeto, his comments, and what went on in Virginia over the weekend. Just a very sad state right now for my country. Maybe that is why I feel so hopeless today as well. I don’t know.