Wednesday, January 7, 2015

Psychological Illness

When you live with a chronic illness it's stressful in so many ways! It's easy for other to watch and judge our lives. Almost everyone I've talked to says the same thing. They've been called, lazy, fakers, drama queens, attention seekers, drug seekers or just flat out overall worthless. Why or how anyone could think we could choose this life is crazy to me. We deal with that kind of judgement EVERY DAY! Most people couldn't handle it once. Does that make us better, or stronger? No it doesn't. We just don't have a choice. It's the hand we were dealt!  It's a financial, emotional, physical, and psychological struggle! The physical is difficult and so is the financial aspect. What I wasn't really prepared for were the psychological changes. 

Financially, we all know how ridiculously high the expenses can be. Between actual, so called, medical care and just logistics it gets expensive. I don't know how people with lupus, that don't have insurance are able to survive! For example, if you lupus is, for the most part "under control", and you have a good rheumatologist, the "norm" for is, is insane for most! Every 3 months means, a rheumatologist appointment, lab work, and whatever prescription costs you have in that time. Not only that but we typically have to also have a family doc on the side, which is generally at least an appt. every 6 months. God forbid, your lupus or symptoms aren't under control! I'm in that situation now. This means I need prescriptions every month at least. I also realized earlier that because things are so tough physically, I'm hard pressed to think of a month where I don't have to visit a medical appointment. That's not to mention, urgent care, ER, or extra prescriptions I might need. (Ie. steroids, nausea meds, etc.) so the physical and financial strain is pretty significant. Those issues are however tangible to a certain degree. Although bills seem bottomless and pain seems to persist, those can be dealt with to a degree. I can work on paying down my medical bills. I can take medicine or do different things to manage my pain.

How do I explain the emotional and psychological problems? It's hard to believe that I'm only 30, but I've been living as if I'm in my 60s or above for 5 years. How can I explain, that I have a hard time relating to people my age? They're busy with their children and friends and family and I'm busy with meds and doctor and hospital visits! The inspiration of this post cane from speaking with a friend and realizing how often I truly have to see doctors . I have a doctors appointment tomorrow, (routine appointment) and I'm trying to remember when a period of time has gone by that I haven't. It's a struggle just to maintain tasks that people do every day without thinking. Isolating yourself from others, whether it's intentional or not, is NEVER a good idea. How can you stop it? The life we are forced to live does it for us! Doctors appointments are the majority of my outings. Most of my money goes to doctor bills and meds. Being chronically ill, to the point of disability has caused me to fight with the person I want to and truly am, and the person the disease seems to be trying to turn me into. I'm clawing at the personality I have and how I want to be. 

The basic question that I'm trying to ask is simple, but I have yet to find or be given the answer. How do you remain your "normal" self, when you feel like everything that was normal about your life has been stripped away? How do you keep the "spark" in your eye when you feel like you're drowning in the ocean??Please feel free to offer any advice you can, or just feel free to vent if you need to. That's kind of what I needed. If you're reading this, thank you and I'd love to hear from you! :-) 

Who would choose this????