What does my future hold?
For many people this is a question of awe and wonder. It’s exciting and even inspiring to think about the future. What could the future hold. What will my mark on the world be. What amazing things can I do with my time. Then there are things like bucket lists, dream vacations, a certain thing someone wants to do before they die, we could go on. I am sure you get the picture.
While I don’t know everything about my future, and it would be disingenuous to say as much, I do know this. I know that my future holds pain. My future will always hold pain and suffering. I get to live the rest of my life (barring any sudden drastic leaps in science, technology, and medicine) in pain. In daily pain. Not only physical but mental and emotional pain.
My future is pain. Of course as I said before I don’t know what the future holds, no one can predict the future or often times even have the faintest idea of what will and will not happen. However I do know that whatever happens to me, wherever life takes me however long that is, and no matter what gets done or doesn’t. My future will have pain in some aspect or another. Daily pain.
I have daily physical pain, from the Fibro/ME catch all diagnosis for you have pain and we don’t know why. To my more specific things like the degeneration in my knees, chondromalacia patella, patella femoral joint degeneration, osteoarthritis. Two knee surgeries later and being told I need new knees, but that I will have to wait until I am older. To the bursitis in my right shoulder from cane use because of my fucked up knees. My carpel tunnel which I have already had one surgery for, making my main hobbies and interests already harder. Using my arms and hands and having to take constant breaks while painting, or doing models, or even gaming. My dowagers hump, which means my spine and neck are just always fucked, no matter how good I slept, if I use my neck pillow. I do daily at home Physical Therapy because that is all I can do to give my neck/shoulders/spine some relief and the change at not getting so tense and bound up that my whole day is rolling with a disadvantage.
To the pain that is my entire body, revolting at the fact we are still existing. Just every single joint in my entire body hurting, pulsing with pain or even just screaming at me while I am doing literally nothing. A bumped arm or toe that can send me into bed for 3 hours in excruciating pain. If not from the pain from the bump/wound, then the crying and bawling that happens because the pain in so intense for however long, then I have to lie down anyway because I have a migraine. The fact that water from a shower head hurts like hundreds of tiny stabs and punches all over me. I also have nerve pain and damage on the right side of my body from having Shingles outbreaks at least 6 or 7 times within a few years, and another more recently. Nerve pain is really fun like electric shocks and a very stingy deep pain that is miserable and doesn’t take well to anything I have tried.
Pain also gives me amazing nausea, so I am either nauseated because of body pains, or maybe because I haven’t eaten in so long because of being nauseated, or maybe I am nauseated because of eating. Then when I do eat I often get more pain because of eating. I have a sliding hiatal hernia, and refractory GERD. I also already have esophageal damage, not only from being a former bulimic but also because it took a full year of tests and procedures to find out what was making me get sick and vomit almost every single day for multiple years. IBS is also super fun and causes me all kinds of pain and discomfort, which also ties into my anxiety, since a LOT of people with anxiety disorders also have IBS.
My own disabilities make me more disabled in so many cases. How hecking effed is that?
I also have daily emotional and mental pain. The anxiety alone, making me tense adding to my physical pain. The anxiety is about anything, and everything. The bouts of agoraphobia that cause me more stress, mental pain and anguish even just thinking about leaving my house. I have nightmares at least half of the days of the week. This adds more stress, anxiety, maybe even triggers my PTSD. All of this adding more to my mental state, emotional pain and then all making my physical pain worse. It’s this constant swirling mass of things that keep feeding each other. Physical pain adding to my depression, the depression making me less likely to do things I enjoy which adds to not only making the depression worse but my pain as well.
PTSD is it’s own beast as well with the fact that flashback can also trigger body memories and pains associated with that. Or even just the stress of the nightmares, flashbacks, the intrusive thoughts which make me tense up. I deal with muscle spasms on the daily as well be it from pain, tension, stress, or just more body weirdness that doesn’t have a name and probably just gets lumped into my Fibro Dx. Which doctors have told me is a catch all for “you have any number of these symptoms and widespread pain and we have no idea why”.
Constant anxiety over how much I am being a burden to everyone I care about. Constant anxiety about the fact I have been told I talk too much about my disabilities. Can’t I just be happy? Can’t I just not talk about things that affect my daily life. The anxiety about finding new doctors and trying to access new pain treatments, or new options in general. Trying to seek out help for my bodily pain which adds to my anxiety more because I have to find new doctors, make appointments, do that first meeting. Bring all my medical history over and hope they even glance at it rather than just at me. Then these things just add to my depression more when appointments with doctors go terribly, either because they can’t help me or because of the more sinister shaming that they love to do so much. Or maybe another test is “normal” and we are back to square one.
Another doctor dismissing me with “go diet and exercise”. Another addition to my daily shame for existing as a disabled person, for existing while fat. Another addition to my emotional pain, the distress, the hopelessness, my depression, which in turn swirls and adds to everything else. Knowing that my future is pain, and will contain pain is hard. It is hard to keep wanting to go when I know this for a fact will a part of my daily life. Sure I don’t know what else my life will hold, but I do know it will be all through this lens of pain. A large spiky bubble that is my constant companion. Ouch, pain here, ouch pangs of sadness here, fuck I just got triggered, ouch more emotional pain, more crying, crap now I have a migraine. A cycle that is not always the same, but is constant none the less.
Every single day of the rest of my life will be in pain, and I don’t know how I feel about that. It makes living hard, it makes gaining inertia hard, makes having fun or even a “not shit day” hard. It makes everything harder and I am tired, and I want a break.