If I came with a title, this would be it. Especially when the weather starts to change. I suffer with Fibromyalgia and many other chronic illnesses, but the Fibro is the one that really messes with life. Being a parent is a tough gig. Add in a special needs child, and then a chronically ill parent, and it gets rough.
I am by NO means an expert, but I have lived and juggled this life long enough to share some wisdom. I am seeing more and more friends, family and followers being diagnosed with Fibro, and many of them have kids on the spectrum as well. So for my post this month, I figured I would address the few bits I have learned about living this life.
- You’re only HUMAN! That’s right. I know, being a special needs parent makes you feel like a kick butt rock star, but you have to remember that deep down, you’re only human.
- Take care of YOU! You can’t be a good parent if you’re sick all the time, or struggling in pain. That means, keep your appointments. Take your meds. Rest if you need to, when you can. If you are a single parent, seek out respite care. You are going to need down time.
- Talk to your family. I hope that everyone has a great support system behind them. Whether it be family, or friends that are chosen family. If so, talk to them. No stiff upper lip. Be honest. Don’t be afraid to ask for help if you need it.
- Talk to your kids. Try to find a way to relate to them what you’re going through. Now I get some of our kids have extremely high anxiety (my son does for sure) so you may need to be careful what you tell them, but tell them. They need to know that mommy/daddy has rough days too. And even if you WANT to do something with them, that doesn’t always mean you CAN do something with them. It has taken a few years to get Liam to understand this. His father is also disabled, and if we are both having a bad day it can be rough. Liam is nine now, and he’s finally starting to understand that our bad days aren’t by CHOICE. Our body is the decision maker here.
- Screw the housework. If you seem to be having more bad days than good, then use those good days to be with your child. Do the things you can’t do on bad days. That housework will be there tomorrow.
- Don’t over do it. Trust me! This has bitten me in the arse more than a few hundred times. You have a good day and you think, “Wow! I feel great!” and then you buzz around, cleaning, playing, etc. The next day will guarantee to be awful. Think hangover, times a thousand!
- Biofreeze, a cold pack, and a heating pad can be your BFF! Okay, so Biofreeze can’t be bought in stores. You can get it online, and some physical therapy clinics carry it as well. Trust me when I say it beats Ben Gay and Icy Hot. (Ladies, it will even help ease Mense cramps!) Heating pad is great too! Especially in the winter. Now, a cold pack. I was hesitant with that at first. I kept reading about other spoonies that used them so when I was offered to try one out for Kelly, I said PLEASE! It’s been a God send! On hot days when I can’t use a heating pad, that cold pack jumps to the rescue. On super high pain days, I rotate heat and cold.
- A TENS Unit will rock your world! Okay, so many may not be familiar with these. I wasn’t until I saw my hubby use on in physical therapy. These are most often prescribed by a physician, but you can also get weaker versions online. I have a weaker one, and it works wonders. TENS stands for transcutaneous electrical nerve stimulation. Basically, you hook these little electrode pads onto where you’re having your pain, then you plug them into the unit, and turn it on. It sends little shock waves into your muscles. It helps relieve the pain and loosen up the muscle tension.
I think that’s about it. That’s all the wisdom I have. I hope it helps at least one person. If so, then my job will done. <3