Counting My Spoons – Ask Me Anything

Every so often I put out a call on Facebook to Ask Me Anything. Below are some of the questions and my answers.

Do you live in a state that has legalized medical marijuana and if so have you tried it?

Unfortunately, I do not live in a state that has legalized medical (or any) marijuana. Here’s hoping that changes on a Federal level very soon. My state is currently in legislation about legalizing medical marijuana to some degree (however, their version of legalizing even medical marijuana is quite narrow compared to most).

Despite that, yes, I have tried various marijuana and hemp products and found them helpful. I primarily stick to the hemp-based products (since they are legal in all states) and have found that both CBD oils and Delta-9 THC are very helpful. I use CBD tincture nightly before bed and it’s made all the difference in my ability to fall asleep and stay asleep through the night. However, I didn’t really find it helpful for pain.

I have found both Marijuana and Delta-9 THC (the THC found in the hemp plant, and thus legal in most states) helpful for pain, as well as for providing me with better ability to focus.

How do you deal with the guilt when you have to say no?

This is difficult because I find that I feel guilty either way. If I say no, I feel guilty out of worry that the person I said no to feels slighted or just disappointed. If I say yes, I feel guilty for having said yes and thus (potentially) over-extending myself.

I have to remind myself that I’m doing the best thing for ME in the long-term. It may not make me or them happy right now but by saying “no” to something now I can do more later, more of what I really need (or want) to do rather than just doing things to make others happy. And, if I have no energy because I’m over-committed myself then I can’t do anything. This is a common issue for me, and I’ve written on this topic a few times just because of that.

• Letting Go of Guilt
• The Guilt and Blame Game
• Learning to Say “No”
• Sometimes “No” just isn’t an option

How did you find a good doctor who will listen to you?

I got lucky, when I was first diagnosed I happened to be friends with a woman who ran out local Fibromyalgia Support Group. It was sponsored by a local Rheumatologists office that had a Nurse Practitioner on staff specifically focused on Fibromyalgia. Nurse Tim was great and really helped me find my way early on. He encouraged physical therapy as well as pharmaceuticals. However, once I improved and realized that pharmaceuticals were not the answer for me, I felt that continuing there was a waste of money ($40 co-pay every 3 months just for one prescription that any of my other doctors could manage).

Did you gain weight because of Fibro ?

Gawd yes! I gained about 40 lbs. thanks to the variety of Fibro meds and antidepressants that I ended up on during those first few years. Thankfully, I lost that weight just as fast (faster actually) after I found that changes in diet and lifestyle were more beneficial to me than pharmaceuticals.

What have you found to be the most helpful in reducing Fibromyalgia symptoms?

Diet and lifestyle changes. By the end of 2011 I was willing to try anything and I finally did. For me that meant a major overhaul on my diet. I cut out gluten entirely, and I avoided processed foods, dairy, and eggs. The gluten and processed foods seem to have the most impact on my Fibro symptoms. While dairy and eggs affected my IBS symptoms.

By changing my diet, my fatigue levels dropped dramatically and my energy improved greatly. My pain levels also decreased and I no longer have extended flares. Typically if I have a bad day it’s just that a bad day but with proper rest it clears up and I usually feel better the next day.

Additionally, I’ve learned a lot about pacing, and managing my stress levels and my time. I avoid over-committing myself as much as possible. I try to pay attention to what my week looks like and plan accordingly. I’ve learned to say “No” as much as possible (although like I said it’s not always easy and sometimes I don’t manage it). I take days to just rest (usually Sundays) and do very little except relax.

Do you get swelling with your flares?

Not so much with my flares, but I do have small-fiber-poly-neuropathy which causes pain and swelling in my feet. If I spend a lot of time on my feet they get really red and swell up. The redness and pain also seems to be really common just before bedtime. I’ve found that the Goodnight Lotion from Resonant Botanicals really helps with that.

What medications do you take?

After years of trying different things I’ve found a steady regimen of medications (mostly over-the-counter) that really help me. The only pharmaceutical I still take for fibromyalgia is a very low dose of gabapentin.

• Vital Plan Restore Kit – This is a combination of four different herbal supplements created specifically for those dealing with fibromyalgia, Lyme, and CFS/ME. I’ve been on and off the Vital Plan Restore kit for the last 5 years or so. I find it really helps me and when I’m taking it I have more energy and just generally feel better.
• Visbiome Probiotics – Taking these regularly has calmed the symptoms of IBS (even if I’m not eating quite right).
• Magnesium Malate – I take this before bedtime as I’ve found that it helps me sleep better, and also reduces any muscle spasms that I may have.
• Nordic Naturals Omega 3 – Omega 3 fish oil is good for many things including general health. However, where I notice the biggest difference is that it greatly reduces the symptoms of dry eyes.

I’ve tried everything to get to sleep, have you found anything that works?

Yes! I too, tried everything. It wasn’t until I had the opportunity to give Vital Plan CBD Oil a try that I found something that actually made a difference. It took a few nights but once it kicked in I found that instead of lying in bed for hours waiting to fall asleep, I was out within 15 minutes. And, instead of tossing and turning all night, waking up multiple times, I slept through the night.

There are still nights when I can’t sleep, but they are rare. They are also most often caused by making poor dietary choices. If I eat tomato-based or spicy foods at dinner time, or drink red wine I will not sleep well no matter what I do.

How do you deal with people telling you what to do, as if fibromyalgia somehow makes you stupid or incapable?

This happened a lot more early on in my diagnosis. In the years since I think I’ve proven to those around me (and to myself) that I’m neither incapable, nor stupid. I’ve also proven that I do my homework, and research well, and that I know way more about what is going on with my body and health, as well as what treatments are available, than they will ever take the time to discover.

Part of being an advocate for yourself is standing up to people. When they try to step in with advice again and again, remind them that you are doing the research and that you are doing the best you can with what is available. If they have some info to offer that you weren’t aware of, thank them for it and tell them you will research it and talk to your doctor. Then move on.

Do remember that they have good intentions. They care about you and want you to feel better, that’s why they are so eager to offer this advice, it’s not because they think you are stupid or incapable, but because they love you and know that you are overwhelmed. They just don’t stop to think that they might be giving you info you already have.

What has been your biggest challenge since being diagnosed?

There have been a few. The first was just reaching that point when I was willing to do anything to feel better. For the first two years I was sick I heard numerous times that I should consider looking at my diet. I was specifically told that I should cut out gluten, dairy, and eggs. I repeatedly found an excuse why that didn’t make sense. Then two years in I decided I’d try anything. I had a food sensitivity test panel run and sure enough what came back but gluten, dairy, eggs, and yeast. It was a huge challenge to change my diet and cut out so many foods. It wasn’t just a diet change but a lifestyle change to go from eating whatever was easy, cheap, and handy, to making conscious choices about what I put in my body. But, I saw the results so fast, and as fast I saw the results my husband saw them in me even faster. So, many times in the last 3+ years I’ve thought about how I’d love this or that, but then I think about what I’d be giving up to have it, and I now that it’s just not worth it.

The second major challenge was returning to school and finishing my degree. I took it slow and only went fulltime my final semester – for two reasons – one I’d received a scholarship that required me to be fulltime, and two I was only four classes shy of graduating (so it made sense to just get it done). That semester was really tough and I pushed myself too hard, resulting in a flare of chronic mono and CMV. I missed a lot of classes but I graduated and I’m proud that I did it.

The third major challenge was getting divorced. Even though it was my choice and I knew I needed to do it, I was scared of how I would face life alone with chronic illnesses. I didn’t know what my insurance options would be or how I’d support myself. Thankfully, I was able to manage all of those things and I can honestly say that the stress of answering those questions was less than the stress I dealt with during my marriage.

How long did you think about starting a blog?

Not long at all really. Before I got sick I already blogged pretty regularly just sharing bits of my life on LiveJournal (that was so long ago). When I got sick I didn’t want to overwhelm people with talking about my health constantly so I decided to start a separate blog about that.

Over time, as I got my health under control, I talked about it less and less and began to focus this blog more on living well despite illness.

I want to start a blog, do you have any advice for me?

If you enjoy writing and sharing, just do it. If you aren’t sure if you enjoy writing, just start writing and putting it out there. Don’t get hung up in trying to make money off your blog. While it can happen, the majority of bloggers don’t make an income off their blog (if they are lucky they can bring in enough to cover the hosting costs).

I’d suggest starting out on a free platform like WordPress.com or Blogger.com that allows you to just focus on writing. If you don’t enjoy writing, you won’t enjoy blogging and you’ll likely give up before you’ve gotten far. There’s no point in spending money on something unless you know you’ll enjoy it and be committed to it.

Nothing else matters, if you don’t have content that people want to read. I see a lot of people get hung up on social media, or taking the right steps, following a course that they took, etc. But, again none of that matters if you don’t enjoy what you are doing and if no one is interested in reading what you write. But, you won’t know the answer to either of those unless you start writing.

Got more questions for me? Post them in the comments below and I’ll answer them there. If I get enough I’ll do another one of these posts.

Related Posts:

• What’s Helped Me Most
• My Story of Recovery from Fibromyalgia
• Balancing full-time RV travel life with chronic illness
• My experience with ACA subsidized insurance (after two years)