I decided to wrap up the BEDS challenge early. Life has been super hectic, and the weather has been craptastic and wiping me out. Plus, I got some Big News, and once I share it, you’ll understand why I need to save my energy.
Okay, here is the Big Announcement: I am starting service dog training on the 5th!!! I’m getting my dog from Can Do Canines. If you need a service dog and are in this neck of the words, I highly highly recommend them. They are beyond fantastic. Unlike some organizations, they will customize the training for individuals’ needs. If your needs change during the course of your dog’s life, they will work with you to add new tasks as much as they can. When I first applied, my primary disability was chronic pain and fibromyalgia, so I wrote on the application that I needed a mobility dog. When I was diagnosed with POTS, CDC changed the category from mobility to seizure alert. (I do not have epilepsy, but this is the skill category they use for people with POTS.) This way I can still get help with some mobility things, but we will also be able to work with the dog on helping with POTS episodes.
I don’t know anything about my dog other than it’s a he. I’ve been jokingly referring to him as Eddie, because that’s the dog on “Frasier” which is one of the best shows ever. Yep, I’m weird!
I still want to blog as much as I can about the training process and life in general, but removing the pressure of blogging every day is helping me breathe a lot easier. Thanks for your understanding, and I hope you all have a wonderful weekend!
Over the past week or so I’ve gotten hooked on the Awakening game series, which is available for Mac and iOS devices. The first two games are available for Mac only, and the rest are compatible with iPads. You play the role of Princess Sophia, who has woken up after being asleep for a century only to discover that she is the only human left in the world.
I love everything about these games. The scenery is gorgeous, and the music is soothing and weirdly effective at reducing my pain level sometimes. There are a bunch of puzzles and mini games you have to solve, which are more challenging than you might think.
If anyone has recommendations for other fantasy games I’d love to try them out!
I’m trying so hard to get caught up on posts while juggling my usual responsibilities of illness management, cat mom, domestic goddess duties, and who knows what all else. I hate that my BEDS challenge has turned into a “three steps forward, two steps back” kind of thing.
Lately I’ve been feeling like any decision I make about my treatment options is going to be wrong. I’m doing my best to throw that attitude down the toilet where it belongs, since there is really no such thing as perfect answers when it comes to treatment options and trying to figure my life out in general. I guess that is one pieces of advice I’d give anyone who has recently been diagnosed with a chronic illness: Make the best decisions you can at the time and try not to get hung up on results. Try not to be afraid of changing your mind. Everything is constantly in flux and you will rethink your current game plan countless times.
I hope this is at least mildly coherent! Benadryl makes the whole “words putting into sentences doing” interesting!
Things have been rough on my end over the past several weeks. I had the worse flare-up I’ve ever had since I’ve been diagnosed with fibro, and that made my mental health go down the toilet. I used to kick myself whenever I shared anything that was less than positive, but then I decided that if sharing the truth will help even one person feel a little less alone in their own suffering, then it’s worth it.
The reason things got so bad was because the temperatures have been all over the place. There was a 45-degree drop in temperature awhile ago, I don’t even remember when. Up till that point, I was doing alright and seldom needed my narcotics. I had managed to stretch out the bottle and it had lasted me over a year. Then I ran out right before the 45-degree drop, which was so stressful on my body that I passed out and had non-epileptic seizures from the pain several times. I finally got a new prescription and the drug bust commenced. (As in, busting open the bottle and popping the much-needed drugs!)
I was extremely hesitant to share this with anyone, partly because of the stigma against narcotics and also partly because I am still recovering from being in a church community where some people were extremely opposed to all forms of western medicine. When I have a flare-up, I still wrack my brain trying to figure out what I could have possibly done to bring it on, which does wonders for my mental health as you might imagine. I’m learning the hard way that that kind of mental and spiritual damage does not go away overnight.
As for happier news, some of you may already know that I had been in the process of applying for a mobility service dog since last fall. Well, I finally got it finished and my application has been accepted! The next step is a home interview with a trainer in the next couple months. I will share more about all this when there is more to share!
Okay, the brain fog is kicking my butt so I’m going to stop here. Hope you’re all doing well!
I’m not going to lie: I just had a really tough week. I mean a Really. Tough. Week. I’m not referring to lovely TMI symptoms, although there were some of those too. I’m talking about the nitty-gritty, cold hard realities. At first I was hesitant about sharing all this. After all, there’s a reason no one tell you these things: they’re uncomfortable. But ignorance is where misconceptions start, so I’m taking the plunge and sharing the more uncomfortable realities of life with an illness that isn’t going anywhere. Here goes!
1.) My illness puts me on house arrest more often than I care to admit, especially in the dead of winter. I just went five days without leaving my apartment. My record is 18 days. It’s not a matter of “just getting out more”, so if that is what you were going to say to me, kindly shut your cookie hole. Sometimes I literally just can’t get out. A mobility service dog will increase my chance of being able to get out, but until or less I am accepted for one, this is the reality.
2.) In addition to being painful and miserable, chronic illness is as boring as hell. This week I actually bawled like a baby, not because I was depressed, but because I was so blooming BORED!
3.) On days I can’t work, socialize, or read, I will blow out brain cells watching TV because that is far better than letting soul-killing depression sink in.
4.) Depression and suicidal thoughts are extremely common in people who life with chronic illness. Honestly, if I live alone, I’d probably be dead by now.
5.) Rude comments are heartbreaking.
6.) Sometimes shaving is a non-event. This isn’t about making feminist statements. It’s about making the statement that I am too exhausted and hurt to shave. (Yes, hurty is a word. Deal with it! :p)
7.) On the really bad days, the “invisible illness” concept feels like a myth. I don’t understand how people don’t see it.
It’s 2016. I graduated from high school 10 years ago. My brain doesn’t know what to do with that. But I digress.
I saw the fibro doc yesterday. I have to be honest: doctor’s appointments make me pretty anxious these days. It’s not like I’m terrified of needles or anything like that. At this point I’m so used to them that they’re no more painful than bug bites. (It probably helps that the Great Vein Explosion of ’15 toughened me up a bit!) It’s more about the lack of control over my body. Doctor’s appointments feel like a big neon sign that says, “Ha ha! Look at her! Her body’s broken!” I’ve always felt different. Hearing aids, being learning disabled, and wearing modest clothing in a world of Victoria’s Secret models will do that to a person. But I am so used to those differences by now, and they’re either positive or neutral. I have yet to find anything positive about having a body that doesn’t feel like bodying. Everyone my age is getting married, having babies, going back to school, getting promoted, and I’m over here jumping for joy because I successfully walked backwards in my last PT session.
I also hate doctor’s appointments because I am just so sick of medical stuff in general. At least it’s better than when I was on Lupron in that I actually have energy for a handful of non-medical activities. I had to stop watching “Call the Midwife”. When I’m not actually in a clinic or hospital, I don’t want to be thinking about that stuff, if that makes any sense.
I struggled with anxiety long before my body copped an attitude. Frankly, most of my loved ones were well-intentioned but completely misguided when it came to helping me manage my anxiety. People think telling an anxious person that there’s “nothing to be afraid of” is a good idea, but in reality it will backfire every time. In my situation, there are plenty of legitimate concerns. You can’t tell me I have nothing to be afraid of. It’s not about pretending you don’t have fears. It’s about looking at them and saying ,”Okay, what can I reasonably do to prevent this?” I let go of fearful thoughts a lot quicker when I have the freedom to express them and let them go.