For some of us, we have years of pain to reflect on. And that can mean times where we didn’t cope well at all. I know I have expressed a deep dark depression and completely unmanaged pain I almost didn’t survive. We have a pain history. And with it comes fear of the future. I am feeling it right now. With the uncertainty in the future. This looming uncertainty. And I am fearful.
Fearing the worst
To some extent, we fear going back into a state at our worst. We fear that dark place. We fear that struggle. We went through it. We know exactly what it took to get out of it. And what it took from us. We fear that could happen again for any reason, at any moment, and thrusting our lives into chaos once more. The fear of survival mode is a heavy fear indeed. I still fear it. I lived in survival mode for a decade. And it was horrific. It is a slippery slope into that. One that is hard sometimes to prevent when treatment changes.
We know from our experience the unpredictable nature of chronic illness and pain that we have no control over some things. We don’t know when things will get worse. What will cause them to get worse. It can make us tentative with changes in our lives that may just tip the balance. It has happened. We have made changes to jobs and careers. And things got so much worse. And we have done nothing at all. And things got worse. And with it, things like financial instability cause a lot of problems and stress for us. And we remember all that. We remember all the problems we have when we cannot work. When things get really problematic. It is unpredictable.
So yes, it is to some extent repeating the past that makes us fear the future. But it is knowledge of the past that makes us understand the ultimate uncertainty of chronic illness in the future.
Ultimately, what can we do with this fear and knowledge of uncertainty in our lives?
Plan for the best, prepare for the worst
This is my motto for most things. I aim to have successful health goals in the future. I aim for balance. I am for maintenance and coping. I hope for improvement. But some decisions I make are based on the fact that I am very aware of my current state of affairs and limitations. That I need to be conscious of the fact I may never improve. That this may be all there is. And it may get worse again. It has, in fact, gotten worse from me currently due to vestibular symptoms. And I have to be aware now my limitations are much more There. We have to have acceptance of where we are at in order to move forward.
Do not take on more than I can chew
One of the main things that cause things to get worse dramatically fast is consistently exceeding my limits on a daily basis. Because I have goals, ambitions, and dreams that are unrealistic. For example, working full-time. I cannot do it. I have been told I can’t do it. Ever. And it is not something I should pursue. Unless the states of affairs improve and it is work from home only. But that would be only if the states of affairs consistently improve and only if it is work from home. Otherwise, no, I cannot.
Making well-being a priority
In some sense, we have to learn from some of our mistakes. And one mistake I made in the past was never really taking my self-care seriously. It was all about pushing through the pain to maintain my career that I couldn’t even sustain. And I suffered for it in many ways. I have learned that my well-being physically, mentally, and emotionally is very important. Other aspects of life like hobbies and socializing are things we need to have a balance. And we need to focus our efforts on our overall well-being.
Knowing the future is never certain
We can’t predict the future. We just can’t. All things are, in a sense, unpredictable. To think chronic illness would play by any rules at all is foolish. We want stability, but we can’t be assured of it. We have to just take the change in stride. Understanding that coping is a process and in that process, we do not always cope well. At times, we struggle. Understanding that illness can improve and get worse in a sort of ebb and flow as time goes on but we manage anyway. Just like my pain varies from day to day, so will it year to year, and decade to decade.
I like stability. I am not a fan of change. It makes me anxious. So I don’t like that I can’t depend on myself to be reliable in any way in the future. I can’t say, I’ll just get a job and fix all this financial instability. I can’t do it. I can’t seem to maintain job stability for half a damn second due to illness unpredictability. And that makes things financially worse. And I get more stressed. I want to resolve the problem myself. And I can’t. So not a fan of the unpredictability of chronic illness. And so I have to plan for ways to survive on the unpredictability of Income. The one thing I am having some serious problems getting around. That whole how to pay the bills while chronically ill. I think the fear of the future and its uncertainty then is something we have to cope with. A constant reminder of… this could get worse. We have to do the things we can that we have learned from coping to not get into our worst-case scenario. We have to plan and account for our health as it is. And know we shouldn’t exceed our limits consistently. But there will always be unpredictability.