(Long long long post!)
It is absolutely heart wrenching to know so many people are suffering but I wish you all the absolute best and most joy in life you can possibly be given; whether your frustrations are permanent, temporary, emotional or physical I am glad you have all found joy and comfort in bettas and whatever other passions you have in life, I wish you innumerable amounts of success.
I personally find the word "disability" a little restricting as when someone outside of your immediate circle hears that you are disabled it can be difficult for them to stray from the usual assumptions that surround the word. I find that no matter what illness, condition or "disability" a person has it often includes a great deal of frustration and that frustration can be what people are prejudiced against. Frustration can utterly destroy a person and make them "act out" or seem odd to others who quite bluntly just don't understand what it’s like to have your body or mind acting against you. I hope none of you mind me using the term frustration rather than disability, it's simply a personal preference. The vast majority of times I've had arguments amongst the family or with friends it's not due to my actual illness but the frustration that it encompasses.
I've had Myalgic Encephalopathy (ME) for the last eight years. ME (also known as chronic fatigue syndrome but I don't like that name) is believed to be a neurological disorder where the immune system is triggered and simply doesn't slow down, it's on the attack all the time and therefore causes constant exhaustion, muscle and joint pain & fatigue, headaches, stomach aches, sleeping for hours but simply not feeling refreshed, plenty of cognitive frustrations (short-term memory loss, mood swings, concentration issues, "brain fog"), hypersensitive senses (sight, sound, taste, touch, smell; I can't wash some days due to water hurting my skin) and just a seemingly endless list of your typical ailments one encounters when sick. The worst part is it’s all invisible, no one can see you’ve been sick… they just see someone underweight, pale and with dark circles under their eyes.
I have bad days and I have worse days. No two days are the same -- heck, on my worst days sometimes no two hours are the same.
I’ve had mental help from two different sources, once forced upon me when I was attempting to attend school on a regular basis; the other was an optional choice in an attempt to not let my previous experience slow my progress. I’ve since stopped seeing my last therapist as I started back-tracking in the exact same fashion as I did previously. I know that the modified cognitive behavioural therapy (CBT) I was given can work for some people with ME but for me it simply hasn’t done anything except worsen my already non-existent self-esteem and pushed my farther from my goals; that’s the problem with this thing… no one knows exactly what causes it so people can only string together theories and care routines from other conditions showing similar symptoms.
The only bit of advice I could ever give to another person with ME is to try to learn to live with it, don’t fight against it. When you fight it, it fights back ten times harder. Learn your triggers, discover what relaxes you and encourages you and try to find compromises that enable you to move forward whilst not pushing yourself so hard so fast that you end up bed-ridden 20hours a day like I was.
To everyone else: it may sound rather typical but try to focus on what you can do, not what you can't. Do what you love to do and love what you're able to do, you'll find this forms a cycle and that cycle will grow and will consume so much positive energy that surrounds your successes -- trust me, there will be plenty once you get that circle rolling. Of course there'll also be failures but if you keep your eyes ahead and remind yourself that the smallest, tiniest positive change you can make will have such a big impact later down the line. Why? Because you tried.
I realized and accepted this not that long ago… I’m now able to do the dishes on a daily basis, bake some basic recipes like banana bread and cupcakes and I have a meeting on Monday to enquire about volunteering opportunities at our local church -- something I never thought would happen. I’ve had so many failures, so many more than my miniscule number of successes and I’ve let so many people down but when I hit the bottom of the pit I decided I was too freaking stubborn to let this debilitating piece of expletive excrement win, I learned the hard way multiple times that I just have to accept this and live with it... at least for now. One day I'm sure I'll get to a stage where I can start to push beyond it but right now I have goals to reach and minor (but significant) things to achieve!
I'm sure the same can be said for many of you who are struggling with your own frustrations. It's hard to look to tomorrow... so don't! Focus on today and on those moments where you actually feel okay, even if it's just okay. You don't have to feel great all the time or smile all the time, you don't have to force yourself into situations you know will harm you or test you far too much.
"There will come a time when three words uttered with charity and meekness shall receive a far more blessed reward than three thousand volumes written with disdainful sharpness of wit."