If you have followed this blog for any amount of time or looked at my social media, you’ve probably seen a post or two about migraines, rheumatoid arthritis, or both. I’ve had migraines since 2013 and was diagnosed with RA last year. Neither are fun and if both kick in, it’s a bad day around here. I’m battling a flare as I write this. If you want to read my previous posts on either illness, you can read:
My Update- Migraines and RA
Due to having less-than-stellar insurance, I haven’t kept up with my rheumatologist appointments like I should be. This should be changing soon, as I am waiting on new insurance possibilities. Once this clears up, I’m going to schedule the first appointment I can get. I know I need to be seen.
I’m taking Plaquenil daily, which is an anti-malarial drug that helps with the major symptoms of RA. It does help the joint pain, fatigue and other issues that I face. I’m hoping to stay on it as long as possible because some of the harsher medications have some really bad side effects.
A flare is when the pain gets really bad and you’re exhausted- it’s like the flu, but you don’t have the flu. I also have severe nausea. I keep peppermints by my bed and crackers in the pantry. It can last a few hours, days or even months. They can be brought on by a number of factors but mine are usually brought on by stress, lots of physical activity, or both. I try to take it easy on myself, but sometimes it just isn’t possible.
This past weekend was a beast. I go to a yoga class on Sundays that center on recovery and that has been helpful- but then my house was being appraised so it had to be massively cleaned and family events occurred. I had fun, but I don’t think my joints did. Friday was a complete bust, and I just lay in bed, napped and did research on my phone for the posts you will read this week.
In general, I feel okay most of the time. My main issue is fatigue, but then, my thyroid also sucks. That’s not a great combo. I’m on levothyroxine for the rest of my life, due to a partial thyroidectomy last year. This medication makes up for what the remaining part of my thyroid isn’t able to do. Some days, I’m ready for bed at 7 PM, like today.
Migraines are terrible creatures, and I hope none of you reading this have them. Mine have continued to lessen over time, which is delightful. At one point, they were occurring at least twice a week. I had to get nerve blocks in my head and neck to help reduce the number and severity of the migraines.
These, as I have discussed, run in my family, and Cameron has been the latest one to inherit them. I’m the only one, however, that has had one that resulted in a mini-stroke.
I’m so glad the migraines have decreased. They really do wreck your life, even if you have nothing planned the day you have one. I feel like I have my life back, in a way. My next health update will hopefully be better, complete with bloodwork done for both RA and thyroid because I’m way overdue for both.
The Spoonie Theory
This theory was developed by a very bright woman who happens to have lupus. Christine Miserandino was asked by a friend to describe her units of energy because they’re pretty limited. (My sister has lupus, and that is rough) She gave her friend a handful of spoons and took one away as she listed the activities in her morning routine. Each activity took at least one spoon. You can find this information on Urban Dictionary
I like this theory- it takes a lot more energy than many people realize to just get out of bed sometimes. Going down my stairs can take twice as long as it usually does when I first wake up versus later in the day. My joints are super stiff when I get up, like many with RA, and it takes extra energy to move. Taking a shower can be exhausting. I’ve never used the spoon theory to explain my energy levels to people, but it makes a lot of sense.
People understand the topic of chronic illness better if there’s a visual involved, right? I know I do. This theory can be used for people with many illnesses like (this is just a short list)
- Multiple sclerosis
- Leukemia/any kind of cancer
How Can I Save My Spoons?
I try to make things easy on myself. I tend to keep easy-to-cook meals around that I can make on bad days, or that the kids can help with. I wear clothes that are comfortable so that if I fall asleep in them, it’s not such a hassle. I’ve fallen asleep in jeans during a migraine and I don’t recommend it. 0/10.
I have a running to-do list, which I prioritize by time and energy levels. If I can, I shop online, and when I do have to go to the store, I make a list. This saves money and energy by not having to backtrack constantly because I forgot things.
- Enlist help when you can. My kids have become a bit more self-sufficient at an earlier age than I liked due to the migraines, but I’m okay with this.
- Keep necessary things close to you. If you’re low on energy, keep your “must have” things close by so you can stay comfortable while resting.
- Try to plan things out so you don’t become overwhelmed.
- Try to stay positive- it does help reserve mental energy.
Staying Happy While Chronically Ill
This can be difficult sometimes- I struggle a lot with positivity when I don’t feel well. I have a weird sense of humor, and I have found that helps the most. Chocolate is a close second. How can you stay positive?
- Surround yourself with supportive and positive people. I have friends, family and a husband who will help me out when I need it, even if I don’t want to ask.
- Comedy. YouTube is great, Netflix, and in my case, I have a Pinterest board with thousands of hilarious pins. My best friends send me lots of memes when I’m laying in bed because I can’t move. It helps me forget the pain. This doesn’t work for migraines- at that point, all I need is sleep and meds.
- Remember it’s just a bad day, maybe two, but not every day is bad.
- Doing what you can. I have to remind myself of this one a lot. I’m used to going at full speed from when I open my eyes until I go to sleep. RA has made that a bit hard- I’ve had to scale back. I do get irritated sometimes. It’s normal. Do what you can and leave the rest for another day.
- Find something you can do that makes you happy on the pain/bad days. I love podcasts and reading. Those are great distractions on the days I need it most.
If you are a spoonie, I would love to chat. If you are okay telling your story, please comment or fill out my contact form. Thanks!
Pics courtesy of Pinterest