“Maintenance Mode” – A tired confession

“Maintenance Mode” – A tired confession

Sometimes you run because you have to. Because if you don’t then the worries you’ve been unable to deal with are able to catch up, and it kills you to let them. They eat away at your heart and soul, and you can’t allow that because if you do, there is no safety net. There is no backup support. There is no one else to shoulder this with, so you can’t allow them to catch you. You just keep pushing through, going a day at a time.

Hoping and praying to the universe that it will all be ok if you can push a little longer…. but sometimes you stumble. Sometimes they do catch up, and they overtake you, and unfortunately, they have tonight, so I find myself unable to sleep and hopelessly in tears in front of my computer.  Typing away to try and relieve myself of some of this pressure. Desperately wishing to get these feelings off of me….. to lay them somewhere else, because I’m already tired, but I still have to work in the morning.

Tomorrow my eyes will be puffy, and I will once again likely blame allergies to people who care to ask why I’m a bit puffy, and I’ll feel bad to do that but the alternative is to explain too many things that they weren’t really in the position, nor wanting to hear in the first place… besides, the last thing I want or need is sympathy, because all it does is compound how inept I feel at not being able to manage and take care of those around me let alone myself.

How expensive peace of mind seems to be, and how odd it is that people are so opinionated on whether someone else “deserves” it or not. I sometimes wonder what it is you have to do to “earn” it? I’m at this point able to work full time and push through everything, but I still am not able to afford it. Its all I can do to keep this family of mine going in maintenance mode. Where just enough is taken care of to keep them fed, housed, and clothed, but not much more.

Deon’s troubles with Fibromyalgia and the chronic inflammation issues keep piling up. He falls more than twice a week, thankfully able to get himself back up after a bit… but what do I do when that is not the case? His medicines keep getting added to, and like me, only seem to be able to keep him in a maintenance mode… to where it keeps him somewhat stable-ish, but doesn’t resolve the pain or the issues he’s experiencing, just minimizes them.

Don’t get me wrong, I’m thankful, and he is too, but it does get to him, and makes him chaotic and emotional, which makes him question everything, and I have no answers…. none at all. He should be going to specialists that we’ve been referred to, but honestly, they haven’t been helpful in the past, and at this point in “maintenance mode” there really isn’t the money to spend on things that don’t help. This sounds horrible of me to say, but I can’t afford it at the moment to continue to see Doctors who nickel and dime you without giving direction nor actual assistance.

My youngest son used to be a catcher for his baseball team. Now he mainly catches anything and every sickness possible. He gets the flu, or a cold so often that we got a letter from the “dropout” specialist warning us that we were reported to them because he has missed so many days. Luckily he is a self-driven student and he catches up in his classes pretty quickly, and once the teachers get around to grading everything, he is still somehow on honor roll. I’m not exactly sure what they want us to do.. send him in sick so he can infect others?  It usually takes a day or two and then he shakes it off, so we haven’t even been making Doctor appointments for him, we tend to wait a day or two… which drives me crazy with worry, yet I know “it will probably be alright”, so we wait first to see, because if we took him in each time, the co-pays alone would be an actual problem.

My older son, he is on this emotional roller coaster at the moment. It worries me because my coworker just lost her son of the same age to just that. I’m having a hard time getting thru to him, I don’t know that he ever really gets the lessons and coping strategies I’m trying to teach him, he gets caught up in the emotional part and just won’t talk to anyone about anything real. He covers it up with being silly, but I can see he’s actually weighed down internally. No clue if I’m handling things with him right or not, he’s so different from my other two. I would like to get him in to see a counselor and have them talk to him and give me any possible hints as to what I could do differently, because I don’t feel like what I’m doing is working, and I’ve not got much time left with him really. Not because I think he would do anything (course my coworker never thought it either), but mainly because he is going to be eighteen this year and released on the world, and I just hope he has the tools to grow the rest of the way and cope in a healthy way with what the world is.

When it comes to me, the truth is… I’m tired, and I hurt, and I’m kinda tired of hurting. MS has thrown at me all the off the wall and odd symptoms to which I have to try and weed through if something is serious or not… If I should try and get help, or wait it out in case it simply dissipates with sleep and quiet time or distraction.

I’m up this evening because I have this odd sensation on my neck, ear, and a small spot on the back of my head that the nerves are telling me that they hurt and itch like crazy. No bite that I can find, no odd rash or discoloration at all… yet its bad enough to interrupt my sleep and not let me be able to rest. Stupid I know, and I’ll do what I always do, but I worry. At some point, my normal measures may not be a “good enough” option.

I actually had to say no to my Daughter’s Mother’s Day offer of getting me a massage, because at the moment the skin on the left side plain hurts to be touched by anything other than clothes. I have to keep covered to find relief which makes the 96 degrees Fahrenheit days we’ve been having kind of tricky.  I wouldn’t have been able to handle it right now while this is going on.

Truth is that I’ve not even seen a neurologist in the past four years. I was referred to one last year, and they said they’d call me in six months and that was roughly eight months ago. I should be diligent… I should be advocating to get a new one as soon as possible. The reality is though that everytime I get one, they make me do tests that take three years to pay off, and they get nothing helpful out of them. They just tell me what I already know by simply living my life. That I’m decently stable compared to others with MS, and that if I want, I could go on medicines, but all it would do is play decoy to distract from other inflammation in my system, and “possibly” cause me to have “less” symptoms “IF” the MS was acting up. Not a sure thing though, kind of a gamble… oh and a side effect is feeling like you have the flu every day. I’ve been there, I’ve done that, it isn’t worth the gamble when at the moment I seem to be able to rest to minimize things… course I can’t rest right now. ><

It makes me question myself to always be in this “maintenance mode” of limping along… pushing a “little longer’… hoping that the universe allows issues with those I take care of, and with me to “just work out eventually.” till I get to the point where I actually can get things resolved.

In every other area of my life, I’m so pro-active. I plan, I figure out ways to resolve it now, adapt or move on… in order to keep going.

In this health care taking aspect, I seem to fail to be able to have that same nature and it’s really getting to me.

I should be getting Deon to a specialist to see what else could be done. I should be taking my youngest in more often to the Doctor so that we can figure out why he’s so susceptible to picking up sicknesses, and figuring out how we can help that. I should be getting my older son to a counselor so that he has someone to talk to since he can’t seem to open up to me without me constantly prying at him. I should not be waiting to get back under someone’s care for this MS….. but, in the world, we live in, that all requires money which I have just enough to just keep us getting by in this  “maintenance mode.”

All this talk about healthcare in the government right now, and honestly they are simpletons and nowhere near resolving this when the main priority they seem to focus on is on the existence of plans you could buy into, instead of the affordability of care needed in the first place. I have insurance, but right now it does me little good because I only end up being able to afford the occasional “maintenance” visits, but nothing further.

But it is what it is… and I’ll keep going as long as I can. I have work in two hours now …. it’s going to be a long day.

Admitting frustration relieves a bit of this, so maybe now I can shake it off, just hope the universe is kind in the level of severity it presents us with, and I’ll begin my run again.

I don’t run because I’m scared, because truly if the resources were there I’d be all over all of these things rather than doing a little for this one now, and a little for another next payday and so on.   I don’t think I run and try to avoid focusing too intently on these worries because I’m scared… I think I run in the hopes that I’ll reach a point where I’ll find what I need in order to just deal with them head on.

Hopefully, after getting this out I’ll be lighter and able to be faster than the worries for a bit. Hopefully, they won’t catch me and consume me again this way again for a little while longer. It’s time to go maintain this life as best I can… now… where were those running shoes?

 

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