Sunday, 3 April 2016
Learning to accept a minimal lifestyle in chronic illness anddisability...
When your everyday activity becomes so incredibly minimal through a disabling illness, you have to really learn how to become grateful and accepting of the lifestyle thrust upon you. Your limits are more obvious and your abilities may have taken a drastic turn or change but ultimately, you have to be accepting of their nature. If you fight against acceptance of your new found reality, your mindset will remain focused on all you feel you can not do or offer. It will begin to focus on all you have lost as a person and all you yearn to be. It is not always easy, but a small aim can simply be encouraged through attempting to make your current circumstances fulfilling enough to at least some level of satisfaction to get you through your day. You do not always succeed and the level of satisfaction may feel incredibly low, but it is better to try than to not. We have to accept our current minimalistic day to day triumphs whether we like it or not and whilst some of us can accept that matter, others take more time to adjust.
Minimal is characterised by simplicity. Whilst I am grateful for the little things in life, they do not relativity bring me joy instantly. Setting myself bench marks and limitations is one of my love hate relationships in chronic illness. There's a fine balance between over doing it and not feeling satisfied. There are so many minimal objectives and achievements that I have to make myself ok with because if I didn't, I would feel particularly heartbroken over all that I can not do. Yes, it is not where I currently want to be in life but unfortunately, it is where I am. Not through fault of my own, but through the fault of a debilitating, chronic illness. Something physically out of my control but something that mentally, I force myself to accept as best as I can day to day. You can only understand how difficult that can be when you have been in such a position.
The medical professionals who guide us tell us to focus on our strengths. We are told to drill in to our mindsets to no longer focus or beat ourselves up over our limits and instead try to allow ourselves to make peace with our new balancing act of pacing such minimal activity. To feel joy towards our abilities and forget about our weakness. Yet in the back of our minds, we have a cause for concern over losing our current abilities, pretty much in a similar pattern to how we have lost whatever we had previously. It is a persistent fear. We are told to shift our focus to what we can do, to feel content with simplicity, yet who realistically has the patience? I know that this has been a battle I have struggled with whilst I have been chronically ill and disabled. Who wants to feel content in the fact that they just about managed to get washed and dressed on a good day? I know I sometimes end up convincing myself that it is not always an achievement. It is something that should be so simple for someone of my age. That is sometimes really difficult to digest and accept on an incredibly bad day where you have to prioritise simple tasks like brushing your teeth or your hair.
We are trying to enhance one of the toughest situations that life could throw our way. When you find that you can not completely change the outcome of your circumstances, you try to change and adapt all that you can. That in itself is not an easy task as setbacks and heartache are more common than triumphs. You can feel bitter over what could have been or how your life should be a truer representation of your corresponding age. There is always that stark reality check on your incredibly restricted mobility and high pain level days. However disability does not have to equal inability. Those who live with a disability or chronic illness do their absolute most to not sink into that mindset. If they did think of all the negatives, what hope or positivity could an indivual possibly cling onto to get them through each day?
Whilst the quantity of our day to day struggles is nothing near a minimal achievement, the quality however can often be seen this way. The phrase quality over quantity is used often to describe the effort we would put into something. To not focus on the amount or number of something but the force and effort behind it. The limits you can face when you become disabled or chronically ill can feel inescapable. There is so much ability that you lose within your circumstances and lifestyle and this certainly has an impact on an individual's mindset. There is always something to get round or over within every small task you attempt, whether physically or mentally. There are some skills and activity that you might possibly still be able to currently achieve within your day to day life, but as a society, we are never grateful for what we can achieve relatively easily until we lose the ability to do complete the task at hand with pure ease.
Becoming disabled through the abrupt nature of a chronic illness typically means not much remains on your own terms. You have something else in the large form of a illness to think about and take into consideration now. How you once envisioned your future typically becomes very distant from your current circumstances. Many feel like it can be a case of feeling like a prisoner to their body and to chronic, consuming pain. Many find that they now have to contend with symptoms that can change like the wind, causing them to have almost zero say within the amount of control they perhaps have on their lives. It's the unpredictability that can be frightening. Despite this, those who find themselves in this situation try every day to adapt their attitude so that it does not reflect elements of feeling trapped in life.
Making the most of something when you are physically disabled is incredibly strenuous and difficult. You feel like a complete failure half the time and like almost everything becomes difficult. It takes a toll on you mentally when you have a physical disability, yet you remain with every intention to still achieve the same goals as those who are able bodied. You are usually not given much help through these circumstances either, it is very much a personal battle that nobody could fathom.
There have been times that through gritted teeth I have told myself, I did well considering my pain levels. Then I have a conversation with someone who perhaps unbeknownst to them, tells me of their achievements that day and I am back to square one in my disabled achievements. The comparison bug creeps in and I feel like a complete failure. I know I am not a failure, but I also feel like being chronically ill and disabled often gives you nothing to show in life. You know internally that you posses a battle many will never face in their lives everyday, yet on paper or when verbally expressed, it feels like nothing.
Sometimes, just being able to brush my teeth and hair alone is my daily empowerment. Other days, I feel I can manage to read a few pages of a book. Getting downstairs and out of bed to mix with others is always my main goal, but that is not always a daily achievement in my world. Sometimes I fail, sometimes I do not. Whilst this kind of existence might not look like a lot to outsiders, I know that it takes a lot of physical and mental preparation as well as balance to complete these tasks. They can be so strenuous that I feel physically and mentally numb. Those situations are not easy to deal with and whilst it may look minimal externally, those who are in a similar position to myself are facing a really tough fight to even compete with normal levels of functioning.
The bottom line is, every small step we take, we are trying our absolute best. Nobody chooses to have an illness and nobody wants to have one either. Nobody would choose for an illness to make them bedbound or housebound for long periods of times or even years on end. Nobody chooses to become disabled, isolated and frightened because nobody would envision themselves to be in these mundane circumstances. Nobody in this life wants to struggle, we all want to plod on through life dodging as many bullets that life aims our way, but that is not possible. We are all designated some bad situations in life that we must abide with if we can not change. So we make the most of what we can.
I do genuinely believe that having to come to terms with the bare minimum of tasks being extremely strenuous on your body, will in time make you a better person. It will allow you to have more patience, to be more rational over what is important in life and eventually, become kinder and prouder of yourself and your achievements. It will also show you what you really want out of life. Which can be both good and bad. There will be days where you ponder over your past achievements and comparison will creep into your mind, but your focus should be on your current existence. If a task is currently a struggle in your daily life, well then make it a triumph. It is also something to work on in hope that one day, tasks will become a lot easier for you to complete.
Again, it boils down to focusing on your reality. On using your precious energy on those difficult but necessary tasks and knowing that your body can just about handle them at your current limits. That should be a success. When symptoms feel debilitating and against you, try to make them feel accommodating within your life rather than baggage that you carry around. We do not aim to become complacent and we do not have to be forever. We can continue to wait for a day to arrive where our abilities improve within certain areas of our lives. If there was an option to take a potion of medication to cure our problems, many of us would do so in a heartbeat. However there is not, so the fact many of us can make ourselves be ok with minimal for now needs to be applauded. It is not easy, we often feel pathetic and stupid for the fact we have to feel so pleased with next to nothing to show for it. Yet if that makes us handle our disability better or at least feel like we are not completely wasting or failing in our day or lives, then so be it. We need to be supported through these teeny, tiny steps to make us feel better about ourselves and these situations.