You have a disease, it used to be only an illness. There will not be a cure in your foreseeable future. You were so sure in the beginning this disease was just a temporary illness. You are on disability, you never wanted it. You ended up needing the money disability provides, but it is nowhere near enough to live on. You have some decisions to make but first, let’s revisit the past…
The first year of your illness, you were diagnosed with an ‘acute pain’ diagnosis. You were told to take a few weeks off work, go to a physical therapist, maybe see a massage therapist or a chiropractor too. After a bit of time, you were encouraged to seek out some mental health counseling. During this time you were given medication for pain. It seemed to work until you were tapered off, the pain came back with a vengeance. Why couldn’t you figure this out? How many people did you know who had the same physical or emotional trauma happen to them and they ‘bounced’ back? You were getting back to work and then having to take sick leave more and more because the pain was so excruciating. You are completely exhausted. Years two and three passed … all you can remember is visiting doctors, specialists, therapists, and sleeping and sleeping, never getting enough sleep! You maybe got a few months of work in here and there, you knew getting fired was coming.
Then the next 4 or 5 years passed … where did they go? Maybe more years went by while you still fought to get better even though the ultimate diagnosis of Fibromyalgia Syndrome was signed, sealed and presented to you in a medical file. This stated your acute pain was chronic and you indeed were given a disease diagnosis. This ‘thing’ you had was not a mystery even though you were still confused by the ferocity of it. You were also informed during these years that you probably had at least one but more likely a few dozen coexisting conditions that can accompany this syndrome.
Let’s move to the present. You have learned a few coping skills. You realize you must stick to the medications that work for your conditions as well as the specific treatments you have found to alleviate as much of the pain as possible. Routines vary, but you know how to handle the changes. You know and experience the fibromyalgia flares that come upon you along with the fibro fog. These are the things you have learned from the years of trial and error you have put in. You have a feeling of some control, some purpose, some idea of the life that is possible for you to lead.
Looking ahead to the future, what will it hold? What are you going to do now that you have created some semblance of normalcy within the limitations of your disease? There are social media outlets, freelance writing jobs, and driving jobs like Uber and/or Lyft. You know this disease is not getting any cheaper and the cost of living continues to increase. The disability pay is helpful but not enough for the long run. Or is it? You must determine what you will need to do. What can you do to supplement your income? Or can you devise a budget within said disability payment to live comfortably but with frugal intent? Your future is up to you.
Live your best life.
~Kim, I Tripped Over a Stone.