Steroids part 3: 3mg

I have been on the steroids for about two months. I started with 9mg, went down to 6mg about a month ago. That was the worst one so far. Now last week I went down to 3mg. I have been on it for several days, and I will be on it for only a week and then stop. I was meant to lower myself on this earlier, but it's not recommended to lower dose if you have a cold and I ended up having quite bad one. In fact so bad, that I had to go back on the 9mg dose for some days to help my body combat it.

Being on the lower dose, I have noticed a few things again. My acne is now almost gone. I still have a few red spots, but they look like to be healing rather than angry ones they used to be. Also I haven't gotten new ones and I can actually see my proper skin behind them!
I ended up getting quite bad moon face with all this. It just means that my face swell up quite badly looking like the moon man. With every decrease, it has been going down considerably. I still have moon face but it's a lot better now than it was. I can see some contours of my cheeks now!
I feel more tired again. Last time worst lasted about a week. This time it should be easier, since my body is producing more cortisols. I haven't been exhausted without a reason. I get tired, but more manageable tired than the exhaustion. I have had a few instances of needing to sleep half a day, but I put that down as having very aggressive cold. 

I think one of the worst things of this whole experience is that I felt normal, like myself while I was on the highest dose, and that I can barely recognise myself in the mirror. With my face being like a basketball with roundness and with the worst acne I can imagine, it's not easy. You can deal with changes like that better when they happen slowly and you have time to adjust, but with steroids, they happened within one week.
Also my blood sugars are slightly coming down and they are somewhat easier to control. They are still higher and I still need a lot more insulin than I used to, but it's more manageable. I really do hope that when I stop taking them, my face will go back to normal as would my blood sugars. Good thing with all this was that my eye check happened to be over a month after starting steroids, and I did not get any steroid damage to my eyes. It can happen very quickly! It often doesn't go away when stopping. It will slow down and possibly stop getting worse, but too often, it doesn't disappear on it's own.

At least now I know what to expect when they start this again. My doctors seem quite confident I have autoimmune hepatitis, so they will put me back on when my ALT starts going back up after this treatment.

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!!

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.

Dealing with Emotional people

First I'm going to apologise for my quality of writing. I've got pretty bad cold and I'm very off right now.

Then to the point:
This is something that a lot of people don't get, is how to deal with someone, who is drowning in an emotion. There are few very important ground rules:

1. Never every blame the person in any way about the situation. Part of it might be their fault, or all of it, but pointing it out will make the person who feels like they are drowing already, feel  A LOT worse. They know they did wrong. They are beating themself up for it already, you don't need to do it for them. Do not even hint in this direction!

2. They have a right to their feelings. So respect them! They are allowed to feel them. Especially someone who is drowning, they have all the rights in the world to feel them. When the emotional feedback lessens, then you can suggest what to do next time or offer help or advice. But the person needs to be calm to accept them. If the person isn't, it will feel like the other "helper" isn't listening to them or is trying to tell that "I don't have the right to feel". Person drowning in emotion isn't too rational.

3. This is the most important thing in the whole depacle: LISTEN! You do not need to say anything, but listen. You can affirm the other person with "that sounds horrible" or whatever fits. It will make the emotional person feel like they are being believed and listened. These feelings are really important. Also saying stuff about your own life, it is taking a big risk. Sometimes it can help, but sometimes it can make the emotional person feel like the other person is trying to take over the conversation with their own problems. Like I said, not thinking rationally.

This is actually called active listening. Most important is to listen what the other person says, and taking it all in. Not just keywords, but the whole message. Someone who is very emotional, won't be able to think straight and will feel like being attacked, if the other isn't listening. It's one of the worst feelings, especially if it's someone close to you. It will feel like an attack. It will feel like the other is saying that you don't have the right to be upset or sad, etc. There is a moment for feelings, and moment to fix the problems, but it's not at the same time. The person needs to be calm to be able to think clearly and start fixing things. That person needs to have all their strenght, because fixing life is one of the most energy consuming things you can do.

Why am I writing this? Well two things, one is that this is what I do automatically, when someone is upset. It's propably part of the reason why people often come to me when highly emotional. Two: because of ADHD, my emotional control isn't same as someone with normal brain function. We have somewhat hightened emotional responses. Now I'm talking bit generally, but some with personal experience. One reason for our hightened emotional responses is that the part of the brain that control emotions (and controls everything like impulses, etc) is working at lower rate. So, emotions in ADHD are a bit wild. Our emotional state can change really rapidly and go from one extreme to the other in seconds. Two, a lot of us have been told that we're not good enough from early age, because we have problems focusing. People with normal brain function don't understand what it's like for us. Focusing is hard for us when the whole world and all the small parts of it are calling our name at any given second. Not all of us are diagnosed at early age. I was diagnosed pretty late. I felt like I wasn't good enough because I can't sit still for longer than an hour. Or I had trouble understanding physics because it has so many different parts that affect one another. Everyone else can, so I should too. I suffered from really low esteem when I was in school. I'm smart, but I'm horrible in school. Then I started to realise, that my brain doesn't take information the same way as other's do. I started to realise, it's not a bad thing. I just have to do things differently! Then I got diagnosis. But this is why people should be very careful about blaming us and accusing that we're not workng hard enough. I've had three burn outs in high school, because I was trying to keep up with others. We have to use more energy in focusing than neurologically normal people, so we give more. Then saying that it's not enough is a slap to the face. Very hard slap that will sting really long time.
Also someone with emotional control issues, one emotion can bring about dozen more. I'm like this. I make a small screw up, I sometimes don't get upset because of the small screw up, but over everything that is going on at the same time and possible the last six months. Depending on the situation and people around me. Life isn't merely a roller coaster with ups and downs, but when there are ups, there can be many thing wrong. Life is never simple!

I think that is enough message for one day.