Off My Meds!!

I'm returning back to ADHD. Almost exactly a year ago, I was told I have liver damage. They didn't know what caused it (it's still unclear), and my doctors took me off Concerta immediately. One of the listed side effects is liver damage. From what I have read, it's very rare to happen after years of taking it, it's more likely to happen just after starting. Normally it settles down after being off Concerta for few months.

But away from my liver. So they took me off my stimulants. I was lucky and unlucky that at this time, I left my job. Lucky that I didn't need the stimulants for work, unlucky that well finding jobs that I can do without stimulants isn't really possible. I wouldn't have been able to continue my work without them anyway.
So since then, I have needed to manage all my symptoms. I have gotten new symptoms from all the stress from my liver condition being diagnosed. I can manage home life somewhat ok without my stimulants. My home is messy, things don't get done quickly and I often forget, well everything. But I have food, I do clean when I remember. I keep active since I know it keeps my symptoms away a bit. But trying to find a job is impossible. I cannot focus enough on writing applications. I forget what I'm supposed to write, and I remember all the good stuff, after I've posted my application. My applications are mess anyway. I am not good writing them on a good day, it's impossible on a bad day. Meaning without my medication. I know what I am good at, and what I am capable and I know for certain that I am not capable of London standard without my medication. I am good when I am on stimulants, but without them, my head is full of chaos. With the stress, I am drowning in it. And it's how it is. There is nothing I can do about it. I eat healthy, so I get energy throughout the day steadily. I exercise as much I can since it helps with stabilising my brain. I try everything to manage my stress and try to focus on other things. I do crocheting, which for me is best form of mindfulness. Learning new techniques helps to keep my mind occupied. But I don't have much control of anything anymore, least of all my own brain.

I did manage to get a part time job doing something I have done before, but I notice that I am not as good at it as I used to be. I miss stuff, I make mistakes and at the end of the day I am often quite frustrated with myself. But at least I get enough money to survive to the next day. Which is all I can hope at this point.

And the reason why I am not on medication at the moment is that my GP has requested medication review from mental health team and I am waiting to hear from them. I expect I will continue to wait another several months, before I hear anything from them. The waiting list is very long. I expect I will end up waiting for over a year to get an appointment, and I was referred during the summer. Hopefully I will have my appointment year from now! Until then, I just have to hope I manage to get enough money to get food and some extra so I can continue crocheting to keep sane!!

Steroid trial

I am in the middle of my steroid trial. I was given budesonide to see how my liver reacts to it. So far, my inflammation in my liver has gone down considerable amount and my lab work are closest to normal than they have been for a year.

So they started me on steroids about three weeks ago. Budesonide is weird one, because it's not meant to go into the blood stream much. It is meant to fix the intestines and liver. With proper dose, it shouldn't go past liver. If you take too much, or your liver isn't good at metabolising it, it will leach into blood stream. With my case, it has gotten into my blood stream because I am taking massive dose of it.

First day, I took it about midday. Never doing that again! I didn't fall asleep properly until about 4am. Not fun! Especially since I woke up couple of hours later to go to work. Second dose, I took more appropriate time. Steroids are meant to be taken as soon as you wake up. Mine are to be taken 30-60 minutes before breakfast. Second day, I felt almost normal! I couldn't remember last time I felt so good! I had energy, I didn't tire as easily. My blood sugars were out of control, but otherwise I felt good for someone who slept couple of hours.
Since then, my energy levels have gotten better. Weirdly enough, my heart rate and blood pressure have gotten a lot lower. My resting heart rate has come down from 70s to low 60s. Blood pressure has been normal first time since last year. This shouldn't be possible with steroids, but apparently it is with me! My blood sugars are somewhat out of control. I had decided on the first day that I will not worry about how much insulin I'm taking and just increasing them as I need to. It seemed to help not to worry about doubling my doses. It's very scary for a diabetic.
As I have continued to take them, I have noticed other symptoms as well. My acne is back.. I wasn't looking forward to that. My exercise induced asthma is gone. I can really easily exercise now. I hadn't realised how bad it had been. I haven't had an inhaler for a while now since I didn't think I needed it. I am reconsidering that now.. And I still don't sleep too well. I don't need as much sleep as I have few months ago, but I keep waking up during the night.

Now I am starting the scary bit, bringing down the doses. I have been on 9mg which is the highest safe dose for me. Next will be 6mg. I am somewhat worried about my energy levels and weaning off from it. I am more convinced than before, that I have some form of problem with my cortisols. I am hoping that my cortisols have taken this as a holiday and will keep working when I lower my doses. Going from 6mg to 3 should be easier than the first one. My body will already have figured out that it't not getting enough steroids outside and will hopefully compensate.

Life Continues

Sometimes I wish time would stop so I could catch my breath. Getting diagnosed with something new is terrifying process. I don't know if the process being so slow for me is a good or a bad thing. I have more time to research what I might have. Research is one of my coping mechanism. The more I know, the less terrifying this new boogie man is. I have learnt to trust my process. This is not my first rodeo. Being diagnosed with three autoimmune diseases, ADHD and so much more, I know what to expect.

First part is the fear and never ending questions. What is this thing? Will it kill me? Will it affect my quality of life? How will it affect my life? What is the treatment?
At this point, my head will be full of fear, anxiety, anger, and questions. Taking control of the situation is only thing that helps me. First step is to figure out what questions I have. Then looking into what are the answers. I trust myself with google. I know where not to go, and initially to stay away from threads of people's experiences. Peer support is important, but it's not the first step for me. I can spent hours reading about what is happening in my body with this new condition.

After I have figured out what is going on, the despair and anger kicks in. Why me? What have I done to deserve all this? Easy answer, nothing. I was just very unlucky. I was born with genetics that hate me. Anger is part of acceptance. Anger is an emotion, and it has it's purpose. I try to figure out the reason, feel it and use it in a productive way. When you deal with it in a healthy manner, it will go away. If you dwell in it, it will take more energy than it gives.

At the moment, I seem to have hit apathy with my process. I am not officially diagnosed, so I cannot accept I have a new condition, but I am at the mercy of doctors and them doing another round of blood and other tests. I have no control over what is going on, so I just have to try to keep myself busy and not think too much until I have reason to. It's not easy. I have set up a new business. I crochet and try  to sell them. The fear of failure is very good distraction. I am trying to figure out all the ways I can market my shop. I will never make too much money out of my business, but few quid here and there would help. I work part time due to being so tired, so this helps. It keeps my mind active even when my body feels tired. It doesn't take too much effort, and it feels nice to create something pretty.