I have a condition that is rated as one of the highest on the McGill index for pain above childbirth, amputation, and cancer pain. I could write a book on this, I’m sure. I’ll try to keep it somewhat simple for times sake and cover a few of the more universal points.
I think its somewhat comparable to what it would be like for anyone that suffers major onset of catastrophic disease or traumatic injury. You learn to live with it, adapt, and can get better at that. For example, I had a friend who’d lost a limb in a car accident. Her left arm. In the initial stages she spent much time in hospital, rehabilitation, and was completely debilitated. Relationships broke down leading to divorce and life naturally filtered out who makes the cut for who, if anybody, REALLY gives a shit. All of her professional responsabilities were delegated elsewhere and she suffered from and battled debilitating mental health disorders co-occuring like depression and anxiety constantly confronting and facing new found realities from disability and with limitations outside of her control, which were suddenly dictating every aspect of her life. Financial ruin and devestation accumilated instantly and exponentially as the medical needs and costs piled on and began to greatly exceed her capacity to generate the income due to disability. There are many layers and levels of negative and adverse consequences that will pile on and completely shift the direction of your entire destiny while at the same time almost every detail of your life and existence is either entirely dictated by factors outside of your control, and in the very least significantly impacted. Your life essentially becomes a constant battle between your own will, desires, motivation, actions and dreams against your own body as an adversary, and regular social constructs, institutions, and beurocracies esentially shift and become foreign and strange in there relationship to you. And it won’t take long at all for you to realise its not designed for or very accomidating of you, due to your new found disability, needs, and limitations. If your lucky you’ll have loving and supportive family but if not your essentially screwed. When I first got sick I actually wondered if I’d died and passed into some metaphysical dimension of literal hell the change was so abrupt and debilitating. I became suicidal and saw not much point in trying to live and function with such extreme pain and suffering. I considered amputation of the extremity the disease process started in. However, over time you will learn, adapt, and develop some skills and coping mechanisms to survive and go on anyhow. Now, I often times forget I’m in pain until I go without medication or push my limits and body anyways, to be severely punished afterwards. There is the roller coaster ride as far as medical diagnostics, treatments and management with that is a nightmare. But for extra measure, be prepared to be written off as crazy or potentially drug seeking by pretty much anyone and everyone outside of the specialized field, in my case neurology. Its dehumanizing, degrading, humiliating and always frustrating, but often times leads to unnecessary, prolonged, and avoidable suffering. Farthermore, out of all the Drs that are able and willing to treat, only a small portion of those are actually competent. Prior to my Dr now I WAS at a pain management facility that did great at the spinal blocks and other injections I had and needed, intramuscular as well, but I still felt when prescribing and treating it was a very limited pill mill type approach with little to no focus on wholistic health. I now work with internal medicine and do better. Eventually my amputee friended ended up adjusting, progressing, being approved for a bionic arm, taking back control of her business, and became an inspiration to others, but it took time, investment, and a lot of learning and adapting. I think the same holds true for a lot of people with chronic pain, at least most definitely speaking for myself. It does not consume my conciousness or dictate my conversations and social interactions any more unless to briefly explain I have a disability with limitations, or if I’m having some problem from it. Most people don’t know unless I tell them or it happens in front of them, I have gotten so good at it. You have to go through a process of traumatic losses and grieving, of almost every aspect of normal life, and submit your fate and destiny to plans and powers not your own. It sucks. You can fight against it like hell, try to deny and avert fully accepting, but its still going to happen anyways, even if against your will. Hope and pray to God you have loving caring family and friends, have some sort of faith, and its probably wise to seek out professional counseling and psychiatric care from the outset to navigate the life changes and secondary co occuring mental health and shifting social needs, perceptions, and dynamics. And be prepared, as you will face exceptional additional levels and measures of discrimination, ostracizing, stereotypes and judgement because the whole “you don’t look sick,” thing. The stronger you become and better you adapt, the more outsiders minimize or deny and deflect your plight altogether. Its a zero sum game. So be prepared to fight. Your battle with your own body and a war with everything else.
- Medication — you will no longer set your schedule and determine your activities and days. Your medication will. Your condition and flairs do of course as well, but medication, is what makes all of normal life and what you can still manage and achieve possible. This is not to be confused with addiction. My disease effects my entire nervous system, and all major systems, to a lesser degree vascularly now, but means there is disregulation or altering in normal and seperate functions, that often times require medication regulation seperately. For example I have to take medication to guarantee and regulate sleep as my body just doesn’t do it right on its own. A seperate medication for dystonic muscle contractions, and for ADHD which is exacerbated by overstimulation from the disease and brain fog from side effects and I question if I’d need it at all if I was healthy & didn’t take the other sedating medications, if I would need it at all. It could appear as if I’m a walking pharmacy even though I have actually struggled to get off as many medications as possible and only take whats absolutely neccessary. Its a pain in the ass and I’d much prefer normal sleep/wake and other schedules. When I am not at home I always have to tote a small medication container with anything I may need. If I travel, I have to bring an entire safe. Why the safe? Well, if you have children or pets around you need it. But mostly, if you take medication, and people know you have a pain condition, they usually can put the two together, and some people, but not everyone, will start drug seeking or try to steal it. Tracking all the dates for refills, Dr appointments, trips to the pharmacy, consume a significant amount of time. Also, when you rely on medication that is still dependent on another person and prescriber. You can not be a control freak you need to be cooperative. Medication means costs and expenses and insurance rigamaros regularly as well.
- Fatigue and exhaustion— google spoon theory. There does not exist a better metaphorical description of life with chronic pain. Energy and physical capacity is a LIMITED RESOURCE. I have seen healthy people complete within hours that could take me all week broken in segments, and still keep going, unphased. I plan my grocery shopping mainly once a month, dreading it and knowing I will be punished by my body at least two days after. Between a heart arrythmia and sympathetic dysfunction normal activities are like running a friggen marathon. It triggers the “wind up,” of RSD which requires a wind down and rest and recovery period after. If I’m running on all cylinders without rest or help, I will run myself into complications every 3–6weeks. Whether issues with one side of my face or bilateral flairs or whatever extremeties I’m using, there is a physical punishment and push back people without chronic pain just can’t understand.
- BEING ON TIME AND SHORT TERM MEMORY- goes to shit. Out the window. You have no way of ever knowing definitively how you are going to feel from one day to the next. You can estimate or guess but predicting is impossible. Sometimes that means no matter how well I plan, my body just won’t go fast enough. Or medication doesn’t “kick in,” on time. Morning and after physical exertion and activity are the worst. Even showering, is a problem as the hot water and pressure often causes excessive vasodilation and sweating, the “wind up,” so I can’t put on make up well immediately after and when I do I sweat much of it off. I used to be unable to dress for hours after and sit in front of fans. Now, I just rarely wear jeans or make up. Even setting an alarm and planning ahead, I won’t know how fast or much my body can move or do until its time and I usually have to plan hours ahead to be on time, or skip past some of the usuals like breakfast or lunch, elaborite hair make up or outfits. And I have a child now to get ready too, making it even more unpredictable and time consuming. So, I am often late or occasionally miss things altogether. The short term memory is just that, and from overstimulation, it just goes to shit. My brain is constantly bombarded by pain signals from all over my body, competing for attention. Its like an overloaded electrical conductor that short circuits with a surge of impact. I can give a detailed storyline and narrative of adventures ten years ago, but need to go through a system of checks or have others remind me to insure I don’t forget and leave things. And I still use a GPS to get around a small town I’ve lived in for 5yrs
- Your most understanding, caring, and sympathetic friends live in your computer. Disability from chronic pain often times comes with isolation and alienation. Something rare or unusual like RSD even moreso. There is an upside and downside to that. Upside is the advent of social media has allowed individuals and groups to connect with eachother in ways not possible before. I have had friends going back our past two christmases, that gifted and sponsored my sons Christmas, that I’ve never met. However they know me better and care more than even my own family. Ten years. There is one lady I lived with when I got sick that has as well, but other than that, I don’t have or know anyone outside of my circle that has stood by me that long. And Mateo loves his packages, letters, pictures, and more from friends all over the country. I have hobby and interest groups and have gotten extremely efficient at communicating via my writing and networking and socializing from home, and am extremely resourceful using online information and social media. I love and enjoy connecting and engaging on line, just as much as in real life, probably even more. The screan and internet provides a veil that hides the more offputting and negative aspects and fall out from my disability. Things like being poor, tired and in pain, difficulty with movement, and not being groomed or put together prior, overwhelmex, depressed or anxious, none of these things are presented or immediately observable via internet. I can literally put my best face forward. Get dolled up, play with angles and make up, take 50 selfies to make that one, make it a profile picture and create positive perception. Then when I interact online I think people are much moreso likely to experience my personality, intellect, and get to know me even better than would in normal life with all the distractions, stereotypes, stigmas and factors that avert or dictate normal perception and interpretation. The downside though is I am sure I am more socially awkward and don’t understand, cope, adapt, or do as well in real life social situations, especially after 10yrs. Its much easier and I much prefer digital communications. And, you have to beware and balance, avoid the crazies. Some people become completely consumed by there disease and groups turn into pissing contest whose worse off or in more pain ect ect. I avoid that. But its extremely difficult and some conditioning and fear avoidance from bad experiences, normal outside interactions and social interactions do not come naturally for me. I struggle with that and so do other people with normal lives and healthy, do so in understanding me.
- HUMAN BAROMETER — so if your not certain the forcast or on a storm front coming through, just ask me. I am far more accurate then your local meteorologist. I am not sure of the exact science behind it, but when the sunsets, my pain goes way up. Especially bone and nerve pain. When there is a rainy or thunderstorm front, it goes way up. Swelling usually starts up to two days in advance. I am extremely extremely sensitive to cold and wind especially. Why the heck do I live in MI? Well, I hate it and there are others I guess that move south or to dryer warmer climates like Arizona for a better quality of life. If it was that easy or simple I would and I miss Tennessee. The weather can increase pain as well as require hibernation of sorts in the winter, limiting activity and exercise too much for long periods of time in the winter, that can also increase pain and decrease mobility from deconditioning and stiffness.
Honestly, this is justhttp://content://media/external/file/40501 to name a few there is certainly still more. I hope this answer helps and makes sense.