Everyday life

What is different?

It's always difficult to answer this question in an explanatory way that makes sense. How is my life different since diagnosis and living with the disease? I don't mind people being curious, I'm very open about having Addisons. I have however found that most don't wanna hear too much about it and get uncomfortable when I talk about it so I try to shut up if not asked and unless a genuine interest is presented. I also find that most don't want to try and understand, they dismiss what I say as excessive or dramatic, but really it's just facts and my reality. I also experience that people want a short 2 minute answer and that is really not enough time for me to explain this complicated deficiency and what it means.

Eight years in I guess I'm so used to things that I forget that what I say might upset others or sound very dramatic even if it isn't to me. My normal can be very far from others perception of normal. Living with a chronic disease and the seriousness of vulnerability and death kind of just gets as common as brushing your teeth after a while. If that is good or horrible I'm not sure. Sometimes when I don't have the patience or energy for a polite answer I just wanna say that well yeah, having Addisons basically means feeling like shit all the time while you put on a mask and try to hide it so no one else gets uncomfortable and you live with the angel of death constantly on your shoulder but otherwise it's fiiiine. But I guess that would be a bit overdramatic.

So, to the question at hand. What is different then? I would say a lot of things and to many peoples surprise not all bad. Some very positive things have come out of this. 

Gratitude and prioritization

The appreciation of being here, just being alive is a great thing to have. Gratitude. It makes the whole world light up in another kind of light, even if it's easy to forget sometimes. The small things in life is worth so much more to me now than any stupid title, money or opinion of others. It really is true what they say, money and status is the last thing you think about when you lie on your death bed, and yes I know cause I've been there.

Saying no and actually prioritizing myself is another positive thing the disease has given me. I used to do eeeeverything for other people before. I was always there. Always. Even if it ment missing important things for me and severe stress. I never said no. I did a lot of things I didn't want to. Now I know that I need to prioritize myself and put my needs first to be able to have energy to be there for others. I also know that the world doesn't end if you say no or even if some people disappear from your life because of it. Maybe it's better that way. I've gotten less tolerant of situations and relationships where I'm unhappy and see to fix them quicker. I take action to change it, if I can't I leave. Life is too short. It's not selfish, it's self care and to me it's necessary if I am to stay healthy.

Pushing myself to have a good healthy base to stand on if anything happens is something that also has gotten higher up on the prio list since the disease. It should always be there, living with sickness or not, but it's become a very powerful motivator even if I in periods of course am human and fail sometimes. I try to live by it though. If I am as healthy as I possibly can be both physically and mentally if a crisis come on, I will be able to handle it so much better and have a better chance of surviving. What this means though is something I often think about. It does not mean I have to exercise everyday, never eat a pizza, always be on calorie deficit and never drink alcohol. It can mean that I need a day for myself at home doing nothing, it can mean going to the gym, it can mean eating a healthy meal, it can mean taking a dance class, it can mean eat ice cream and pizza, it can mean meeting up with a friend. It varies, but it's something I always evaluate. The awareness of health in itself is something I now always carry with me. I check in with myself and analyze my needs a lot.

Forced recovery, structured planning and data analysis

Another thing I always do is plan and structure my calendar. This is non-negotiable. It's a way for me to manage stress and see to that I don't overdo it. Check out the spoon theory and you'll know what I mean. Im basically planning my energy. I put rest in my calendar, not only all the things I'm going to do, but also doing nothing. In the calendar yes! Tuesday night, NOTHING - alone time with no activities. Again, if this means I have to say no to some events and happenings, so be it. Energy comes first and if I didn't do this, a personality like mine have a tendency to speed up to 180 and start 5 new projects along with a renovation of the apartment just for the sake of it. 

Furthermore I log things, a lot of things, but I've come up with a good system during the years. I have Excel files with daily logs for my symtoms and how I feel. It's data on everything from how much cortisone I've taken, to which vitamines, to how much water I've been drinking, to calories, to hours of sleep, to stress level, to headaches, to exercise and step count and you name it. Things I want to keep track on. It's not something I use everyday but it's documented and I can go in and analyze and check the data when something's gone wrong or I want to make a change in life. It's helped me understand how my body works and helped me understand why I sometimes crash. It's not always an explanation in there, but it has often helped me review what I need to do and what I shouldn't do to feel as good as possible.

To help with the data collection and to remember my mediciations through out the day I've also invested in a Fitbit. Not the most expensive flashy one, but it vibrates when it's time to take my medz if I haven't already and it tracks some data that I want to collect. 

On that note, something that is automatic and routine for me now that might sound like a hassle for others is that I need to take mediciaton with me everywhere I go, as well as solu cortef which is an injection kit if I would go into crisis. I always have a pill box with me as well as the injection kit. Everywhere, everyday. I can't forget it, I can't make it through the day without it since I take cortisone 3 times a day. I also have a couple of medications at home that I take in the morning and before bed so I can never just randomly run away on a sleep over without planning ahead. I need to get home. I will survive without them, I just might not feel too great. The ones I can't survive without though, ALWAYS with me. I also always need to try and calculate my dosage. I have a daily base dose but I might need to updose due to stress and there is no way to measure this. Stress can be emotional, psychological, physical, come from within me or outside factors that I sometimes can control, sometimes not. Preferably I should updose in advance, before the stressor hits, easy to predict huh? Still fail on this one again and again but I've learned alot and it's forced me to be very honest with myself, to truly know myself and to be able to set boundaries.

This also means travel requires more planning than before. How are the hospitals in the country I'm going to? Is the health care in good standard? How far from the nearest hospital will I be and how long would it take to get there if something happens? Can I speak the language and explain what I need? Do I have all the papers I need and emergency cards and amulets and medz with me? How do I manage my dosing with the time difference? I can't just go without a plan. I can never be spontaneous. 

Another thing that I don't think people really understand are the symtoms. Even when I am at my very very best, I still experience symtoms daily. It can be headaches, swellings, mood swings, exhaustion, tiredness, sleep deprivation, dry eyes, sore eyes, blurry vision, stomach issues, throbbing hands and feet, muscle cramps that can be very painful, skin irritaions, hair and nails gets affected, muscle weakness, tremors, brain fog, palpitation... As I said before, many of these things I'm used to so I don't really always pay attention to them (another reason to log them) but they are always there. Some of them I have found methods to manage, and often that helps, but I can never completely make them go away. It's just a matter of which symtoms for the day and how bad. Mostly, they are managable enough for me to still function though.

Fears and mindset

In addition to that I live with an increased risk of developing other autoimmune diseases and an increased risk for osteoporosis. I don't walk around and stress about it and I don't live in fear, but of course I am very well aware that it's there. I've chosen to stay positive though and as stated above, do what I can to be as healthy and well as possible. I also have a vulnerability to infection. I don't get infected more easily than anyone else, but when I do get an infection it's very difficult for my body to handle it and it can be dangerous. Especially with severe infections, fever and vomiting. So, yes, if you are sick or have sick kids at home I do appreciate you staying at home and not spreading the infection around. It's a god damn battle every time infection happens. 

So yeah, a lot of heavy things around this you could easily go insane over and get anxiety for. Feel sad, mad, angry, depressed, scared. But I've chosen the positive approach and I often turn to my Finnish sisu (google it) to stay on top of things best I can. Of course I am human and have days where I cry, scream, throw things and just want to give up, but I don't. What choice do I have? I also have days where I don't have the energy or strength to do what I know I should do to feel good. Fuck cooking a healthy meal, let's buy a fat dripping pizza instead, skip the gym and lie on the couch and watch a movie and find 1000 excuses to not exercise. But you need to find balance.

The struggle for me is control, that I can never just relax and let go. I need to always be aware and take responsibility for everything in regards to my health. I can never for example just cut loose and get drunk, how would I read my body and symtoms and know how to dose if something is wrong? Or worse, forget to take my medication and worst case scenario go into crisis. I can rarely do anything spontaneously in fact without paying some kind of price. Of course this is unreasonable and I've on rare occasions been drunk or done something sponanteously that I shouldn't, not exercised for periods of time or had an unhealthy diet for too long and more. But point being, that it always comes with a price and a risk that I need to assess and see if I think it's worth it. Often it isn't. The disease affects everything in my life: job, social life, relationships, hobbies, my financials... Don't get me wrong, the above is just an example, I can live without getting drunk ever again. That's not the point. I guess what I'm saying is that in regards to a lot of things I don't feel that I have a choice, that I have to decide from an Addisons perspective and frankly that sometimes really sucks. 

However, I do feel that overall I have a good balance to stay healthy, I have an overall positive "I can do this"-attitude, I find ways to do whatever I want to do even if there are obstacles, I don't listen to people telling me what I can and cannot do and I have a willpower that's taken me far far far from where I was 2016 when I got diagnosed. The things I can do now was not even imaginable at the time. I hold on to that, the progress, to the fact that I am strong and that I can do whatever I want as long as I plan for it, be smart about it, have patience and sometimes, ask for help. There are no undoables, no impossibles, no cant's. Analyze, adjust, adapt, set your mind straight and GO. 

/Kehlan