A bad day of pain
I had a bad day of pain today. Ankle has been in a flare the past four days. Nothing was calming it down so I thought putting on a compression sock might help. It caused my high ankle to be bothered by the elastic at the top of the sock. I had to take it off. I could only take so much pain. My back was bothering me from sitting too long after my appointment with my psychopharm. It was good talking with her. I really missed her. She is back from having surgery two weeks ago. She faired better than me in that regard. I don’t think I would be back to work so quick.
We talked about my therapist and she asked if I wanted another therapist. I said I will discuss it with my therapist when I see her next. I don’t want to say yes and then we are able to work things out. I don’t have luck with therapists. They usually last a year with me if I am lucky, two years. More than that is a bonus but not expected. I really like this therapist but I am having trouble talking with her because of my fear of her laughing at me. I often feel intimidated by her and close up. I don’t even shoot the shit with her anymore because she becomes so rigid. It is hard to talk with someone when they have these expectations that you should talk about stuff. I get that is what therapy is about but I am literally not talking at all in sessions. I talk a little bit in the beginning but then I close down and it is so damn hard to open up. I also think because I have yet to attach a song to our work, it is hard for me to feel connected to what I am doing in therapy. Music lyrics always helps connecting me to therapy for some reason. I had quite a few songs with my therapist of 16 years. I would make her CDs to play. I was invested in the time with her. But my current therapist, I don’t feel like she gives a shit if I stay or go and that is hard for me to handle because if she isn’t in there with me, then I feel like I don’t have to say anything. She is noticing that I am not talking more. I can’t help but feel like this relationship is heading out the door. I will be sad to see her go because I know she is a good therapist, maybe she is just too good for me.
I just wrote her a letter. I told her my frustrations and more of what I just talked about. I think better when I am writing things out and I got a lot out in the message. I hate that I can’t talk to her in person. I think that is part of the problem but I don’t think it is going to change. I wish there was a room I could go to to have the conversation rather than for me to stay in my room. I think that is the other thing. I am trapped in my room with no way out so of course it is hard for me to talk. But the other problem is I feel she isn’t receptive to what I am going to say or is going to laugh at me for speaking about something. I am going through a lot medically and I haven’t been able to voice it to anyone but my friend in Canada. She is the only person in the world that gets what I am saying about my bladder and bowels and what have you. She also cares a lot about me and that is the thing with this therapist. I feel like she doesn’t care, like she can do without me and maybe she wants to get rid of me. I don’t know but I had to ask it. I know part of it is my whole nervous system being shocked with surgery on top of a CSF leak that is making me feel so drained that mentally I just am not there. I drift off and stay that way. I get like that while I am in session with my therapist and it is so frustrating because I just cannot think of anything to say. Nothing comes to mind. NOTHING!! It is like someone wiped my brain of all thoughts. My psych thinks it more neurologically than psychological. I am still recovering from surgery even though it has been 3 months but I haven’t really done anything in that time. I haven’t gone to Starbucks or any place else other than the pharmacy and maybe a grocery store. I haven’t gone for walks or even used the T to get around much because I have been feeling like such crap. But resting hasn’t been helpful for me. I do rest when I need it as when I went to the pharmacy to get the antibiotics I took a nap after. I had to I was so wiped out. I just conked right out.
I start PT tomorrow and I am kind of scared. I am scared it is going to hurt and cause me real exhaustion. In my current state, I don’t think a rigid regimen will work for me because I am just too weak. I am not strong enough for something rigorous. It is going to be a slow going and I have a good physical therapist that I like working with. She makes the difference in wanting me to get better. I haven’t seen her since last year when I was working on my right ankle to build it up. I am sure I am weak in my legs for lack of movement. I hope that I can build some strength up so that showering isn’t so damn tough. If I can shower without sitting down more than twice, I will consider that an improvement. I also want to be able to go upstairs without being so damn short of breath and my heart rate going bananas.
Did too much and paying for it
Yesterday I did grocery shopping and showered. Today I went to the pharmacy because I forgot to go yesterday. It was hard. I walked half way there only to realize I left my mask at home so I had to walk back. I had to rest because I was short of breath. I got my meds and then collapsed when I came home. I have been sick since 11 am. I have tried to keep up with eating and hydrating but it has been difficult. My bladder is giving me signs it is not completely healed. I have been experiencing some hesitancy to go and then some starting and stopping when I do go. I am frustrated. I then had to go again an hour later and I had a full bladder when I cathed. So I can’t rely on voiding anymore. I usually cath at least three times a day but now it might have to be more. We’ll see. It is still early and I am still drinking to keep myself hydrated but it is hard when I am not thirsty.
I got headaches, palpitations, and high heart rate going on. I have been lying flat but I couldn’t stay down. I was too antsy. I should have taken an Ativan to calm down. I think I have to drug myself in order to get the much needed rest I need to get rid of the fluid. My friend said that it is like a bruise. Another person said that I need a drain. If I have to have surgery, I think that is what is going to happen. I am kind of scared of surgery because I already have arachnoiditis and I don’t want it to get worse or add to what I have. I am starting to have immune response to surgery and that isn’t good. Arachnoiditis is sort of like an immune response to surgery. My friend said that it will not go away. I am stuck with it but I need good pain control. Trouble is with Covid, I am not going to be able to see the new pain staff my pcp wants me to see and I know that I need an increase in pain medication. I don’t want to switch meds. I just want to increase what I have as the non-opioids are not doing much for me in terms of pain control. I have been on a stable dose of meds and just haven’t had too much relief except for the extra I take when pain is really bad. It really isn’t an “extra” as I don’t have much room to take more than I need on any given day. I hate that I sometimes have to ration my meds because otherwise I will run out before I can get a refill. It isn’t all the time that this happens. But with recovering from surgery, I have been in more pain than expected.
I want to write more but I need to lay down. Head is pounding and vision keeps getting blurred. I think if this keeps up I might have to go to the ER. I hope not but I don’t like these symptoms I am having and my gut is telling me something serious is wrong.
Thoughts while reading
I have been re-reading Unquiet Mind, Kay Redfield Jamison’s memoir of her bipolar illness. I read the part where she describes coming to terms with her need to take medication and how she lost a patient through suicide. I had highlighted the chapter, probably because I saw there was no point in keeping myself alive. I had always said I was to die by my own hand. I had come terribly close last December. I don’t know why I am still here.
Last night, after I ended my blog, I got the results of my MRI of the past week. It said that I had a large volume of fluid in my spinal canal. It also said that I had arachnoiditis, basically clumping of the cauda equina nerves. This occurred post operatively. I don’t know if this is going to go away. I know that it is a painful condition. I guess it is good that I already am on pain medication because without, I would probably be really hurting and be stuck without pain management. I am to see my primary next week. I want to ask him to increase my immediate release dose so that I am taking the same dose for extended release and for breakthrough. I don’t know if he is going to be open to it. I figure I don’t have much to lose by asking.
I had made some notes about the book on an index card I am using as a bookmark. There is a lot of stuff that is important to know if you read this book. One is that treatment of a mental illness is as good as the medication treating it. Lithium is very good for bipolar/manic depressive illness. I am finding that duloxetine finally is working for me for my depressive illness. I don’t have bipolar disorder. I have recurrent major depression and it has taken a lot of trial and error to find a medication that works for me. I currently take 50 mg and it seems to work. My symptoms are lower than they were though I am still in the severe range. It is just that I don’t always feel every symptom of depression every day. Some days I can feel it more than others so results will vary. But Jamison’s take on medication is something every patient goes through when they have to take medication for their illness. The struggle to stay on medication is real. You can’t change my mind on this. Everyone I have ever known struggles with being on medication, even more so with psych meds. The stigma that you should “fight” without it kills me. It is what keeps a lot of people in pain because they feel they shouldn’t be on medication for whatever reason, usually because they don’t want to feel “weak”. I call bullshit. You are far from weak if some pill will help you with your problem. Unless the medication you are using is the problem, that is a whole other can of beans.
Stay the fuck at home
here is a funny video about the corona virus. I find it funny. It is a wonderful message. It contains swears so it won’t be safe for work.
I waited all morning for PT to come to the house. I was getting mad that she was late and didn’t call. She had said she would be here around 10 and she didn’t come until nearly 12. My head was killing me waiting. I can’t seem to sit for too long. Back tightened up after all the exercises she gave me. She wrote them down. I don’t have to see her until next week. Thank god. I don’t want to see anyone else this week.
My cousin put me in charge of organizing a zoom meeting. So I have been sending invites. I don’t know who will come or not. We have a small family on my father’s side. I got a text from one of my cousin’s who deadnamed me. I want to respond to it but she may not know I changed my name. I don’t know if she knows I am trans either. I guess we can talk about it tomorrow when the meeting happens. I think it is just going to be a few people anyways. I can’t imagine there being a lot as it is at night.
I am in a weird mood today. I feel down and out but then I feel ok only to go back down an hour or so later. I just been trying to stay afloat with something. Twitter has been a blessing and a curse today. I am informed about the virus and also who has died from it. They are starting to list doctors who have passed from the virus. It is all sad. I can only read so much before having to switch to Facebook for a little bit. But facebook is not any better for distraction because it lists the past few days events instead of today. It is so annoying. I hate the algorithm. I spend more time hiding things to get things current than actually reading stuff.
I made coffee today. I only had one cup. It is all I really wanted. It was good with my sister’s granola bars she made. Chocolate and peanut butter with oats. It was so good. I have been wanting to make an egg sandwich but my back is too stiff today to try and cook. I made boiled eggs last night and that nearly killed me. I got to have a protein though or I get hungry.
I need to take a shower but I don’t feel like it. I feel dirty for some reason. Bladder has been off the wall today with strong urges. I feel like I just make it to the bathroom on time before it lets loose on me. I hate that I got to run to the bathroom. Just makes me feel like I don’t have control. I haven’t cathed today. I just been voiding on my own because the urge has been so strong. Yesterday was a cath day. Maybe I am going like every other day cath/void. Least my urine has been clear so I know I don’t have an infection.