Progress is never linear, neither is health. We keep circulating around the homeostasis, balancing out with the medication and treatments, for a while we feel almost normal, but then the moment comes when you hit another low, and you never know when it will end. You lose yourself in the pain, in the anxiety, you submit to your delusions and let the malfunctioning parts of your brain take control.
It can be depression. It can be bipolar disorder. It can be schizophrenia. It can be reoccurring physical illness. All of you who suffer know those moments when nothing seems right and you are left at the mercy of others, as you cannot count on yourself.
I want you to know, you are doing your best. You are seen. You can count on your loved ones, on friends, even on some random folk on social media, as proven plenty of times when people received life-changing help by strangers. More people than you know care about you. You aren’t worthless, you aren’t a burden. Please accept, that for your loved ones it’s a privilege to be able to assist you in any way you need. Even when they are tired, even when you see their disappointment that you are not yet doing better, nobody is blaming you, it’s all love and care.
You are probably already a veteran of survival. Living with chronic illness is playing life in nightmare mode, and the final boss is invincible, you keep kiting him, you keep attacking him, stalling him, but he never dies, and he never rests. You do need a rest though, and it’s when he can keep hitting you mercilessly, as you are unable to run.
I have some helpful tips that help me survive the worst of times, when your health is the most unreliable and you feel out of control.
IKEA is your friend
IKEA has a food isle, where you can buy pretty good products for cheap, and in bulk. My personal favorite are frozen veggie ‘meatballs’. They go for 19PLN per kilogram, which is pretty cost-effective. They are also vegan – only contain vegetables, with visible pieces of chickpeas, carrots, peppers, corn and kale.
I stack my freezer full of these, and they are a life saver for when you have no energy or money. You just need some cooking oil, white rice (which also is very cheap in bulk, and long storage), and tomato sauce (also can be bought in bulk).
You just need to fry these for 5 minutes, then fry with the sauce for 10 minutes, and boil the rice. Everything takes 20 minutes to prepare, and you can make the amount to last you for few days. It’s not just a cheap and easy option, it’s also very nutritious, and you can feel good about the carbon footprint and lack of suffering caused by the production of these. Personally it does lift my spirit sometimes when I am down but one good thing I can do is to make sure my food is helping the planet. Stacking two freezer drawers with these makes it last for solid few weeks when you don’t feel like going out shopping or cooking anything more elaborate.
If you’re feeling fancy, you can fry them on onion and add your favorite spices.
Oatmeal is a godsend
You can buy oats in bulk for very cheap, and store them for long. They will be immortal if you add a bay leaf to the jar, for soaking up any potential humidity. The most basic oatmeal is just overnight-soaked oats with additions – a long storage, cheap option for additions is your favorite fruit jam and peanut butter. You can survive long on that, and it takes two minutes to set up.
You can add also any leftover food you have in your cabinets – nuts, honey, cacao, chocolate, anything. Just to add a little variety if possible, but if not, it’s still okay, and it will still be tasty and filling.
If you forget to set it to soak in the evening, you can always soak it in the morning, just wait an hour or two.
I also buy giant containers of chia seeds, and add some. It makes a big difference nutrition-wise, and isn’t bad taste-wise.
Set up a saving account
Personally for me, this is crucial. I have noticed that I have enough money to do something with, but I do not have any urgent needs. Knowing from past experience what can happen to money when I am not doing well, I have decided to freeze it in an investment. I’ve set up automatic transfers each month to that account, which takes a big chunk of my paycheck. Since that was what my bank offered, I have set it to 6 years. Only after 6 years I will have access to this money, with interest.
Thanks to that my destruction capabilities are severely limited by a part of monthly paycheck. This way when I lose control, and start uncontrollable spending, the worst thing that can happen is that I pay the bills next month. But I won’t go bankrupt or in debt. And of course I will have to eat vegan meatballs with rice and oatmeal for few days or weeks.
Having this safety net is essential to jump back to normal functioning after an episode. It is also responsible for anyone really to save money instead of spending everything you make each month.
Blackout curtains saved my life
When you spend the night or few all up and hyperactive, eventually you will crash. You will need the sleep to recover. When I was living in Mordor, a very busy part of Warsaw, it was hellish because the lights were constant. If not the sun, then the night lights and building lights, construction lights. Light everywhere, there was not a moment when it would be just dark and silent. We need darkness and we need silence for our sleep to be really restful. Our bodies need that rythm.
Now when I moved I still have construction and other light sources (even Christmas lights of my neighbors) during the night time, but I have blackout curtains now, and any time when I need rest, be it day or night, I can just close them, and have darkness so deep that when I close or open my eyes it makes no difference. It truly helped me to sleep better. Now, blackout curtains are an investment, as they aren’t cheap, but it’s certainly worth considering.
Ask someone to assist you with the meds
You may experience the urges to stop taking your medication. It makes you feel funny, you’re sleepy, you have no energy. Sometimes you may start thinking you don’t need them at all, or that they just want to poison you, they limit you, and you will not be reliable with them. It’s okay to ask for help. Ask your partner, your friend, your roommate, your parent, anyone close to you, to ask you directly to keep your medication at fixed time.
If you do not listen to them at least they will know what is going on with you, and be able to organize help for you. Even a doctor’s home visit. Someone needs to know what is going on with you, and taking your medication is crucial, especially in those moments when you are slipping, not taking your meds will only make it so much worse, and might result in a full blown relapse instead of just a blip.
It’s only 5 minutes
Nobody else knows what is going on inside your head, what you experience. Journaling is a way to capture at least a glimpse of it. Trying to force yourself to write even just a little bit about your day is a great help for yourself and for your doctor to get the insight regarding the triggers, the symptoms, the timeline. Set yourself an alarm at fixed hour every day, and then a counter for 5 minutes. You only need to spend 5 minutes writing. If you feel inspired and words start flowing, feel free to ignore the alarm, and just keep writing. If you write enough in less time, that is okay too. The important part is that you took the pen and the notebook and sat there to write. Feeling like it’s going to be only 5 minutes helps in getting motivated to do it.
Similarly movement is important, to stretch a little, to move your joints when you’re bedridden, or just too tired to do proper exercise. Stand up and stretch your spine just for 5 minutes. It will be a massive difference, imagine if you feel bad for the entire month, and you do not move. The health risks are great, but the 5 minutes a day already can save you.
The 5 minutes rule can be applied to anything that you find important that is hard to motivate yourself to do. Be it exercise, reading, personal hygiene, anything that brings you difficulty.
It’s not your fault
I know you are in pain, but even worse than the pain is the shame. The everlasting, burning shame. Shame of being broken, shame of being reliant on others, shame of being unreliable, shame of needing help.
It’s not your fault you got ill. It’s pure math, it could have happened to anyone, fate is merciless and you happened to not have luck in this department. It sucks. Nothing that can be said would make the situation better. It sucks to hear all the faux-positivity, the ‘you are a warrior‘, you just feel useless, ashamed, and broken, and anyone who tries to see some positivity in your situation just makes you annoyed, because it’s so clear they have zero understanding of what it is like to be you.
I see you. And I want you to know, it’s not your fault. That’s it.