Oh great. Here is yet another blog article trying to tell me how to live with pain. What does this writer know? This writer lives with 6 invisible diseases…and all of them have caused pain. Hereditary Hemochromatosis (iron overload), Porphyria Cutanea Tarda (sensitivity to light, skin blisters), Hashimoto’s Thyroid (autoimmune…caused extreme stomach issues), Epstein-Barr Virus (felt entire vertebral column flare-up), Depression from pain, and Fribromyalgia (when anyone touched my skin, it felt like a slap).
Over the last three years, the pain continued to get worse. I opted not to be on the pharmaceutical drugs due to the fact that HH is a genetic condition and no doctor could tell me for sure if the drugs would make my liver worse. So pain it was. But I wasn’t going to stop there. I continued my search for things to help me cope that were going to work with my body naturally. What did I find?
- Turmeric milk. Turmeric has been used in India for thousands of years for its anti-inflammatory properties…due to the active compound curcumin.
- Relief. Building on that, I take this product because it has ingredients such as glucosamine and chondroitin, but even more than that it also includes turmeric root extract, as well as yucca root, which has long been used for osteoarthritis as well as inflammation of the intestine. Ah-ha. Hmm. Remember my stomach pain before? Better within weeks of getting on this.
- Restorative yoga. Yoga has been shown to decrease the stress hormone cortisol. Do you think I might have been stressed when I moved if my whole body felt like it was on fire? Yes. Just a little. The difference in restorative though, is that you get to use comfy bolsters, blocks and blankets. So we made little nests, and sat in that pose for 5-15 minutes depending on what it was. I had a hard time at first, but learned to let go of my expectations of what my body used to be able to do. The poses became second nature.
- Vinyasa yoga for back pain. I graduated to Vinyasa…honestly, only because a friend pulled me in the direction my mind was afraid to go. When she suggested restorative, I gave it a try. When she said that I could do Vinyasa and possibly teach one day, my mind shut her down due to the pain. “She has no idea how much moving hurts.” Said the mind…but the heart wanted to get better. Thankfully, it’s pretty strong, and said “Let’s do this thing!!!” And so I did. Almost 200 hours later…the girl on fire. Literally.
- Meditation-like thoughts. When I felt myself go into the dark place of pain, I would literally stop and say things to myself like “I am breathing in. I am breathing out.” I didn’t come up with this on my own. I read part of a Thich Nhat Hanh’s You are Here, except at the time, I didn’t want to be there. ha. So I never finished it. But it did teach me to focus my breathing.
- Friends checking in on you. This part became difficult. Not many people were in this category. When you are in pain, people slip away. They do. It’s not their fault, but it is in the human nature to be uncomfortable when you don’t know what to do. Most don’t climb down in the hole with you. Watch this short video to get the full meaning of “The Power of Empathy”. Rarely can a response make something better, says Dr. Brown, what makes something better is a connection.
So my friends, I leave you with my connection to you. I am in the hole with you. I have climbed down there. I will hug you. I will give you that love and connection to your pain, but the next step is on you.
I need to clear up some common misconceptions. Yoga is a practice. Not a religion. Just like how Buddhism is a way of life…a practice or philosophy. If you come from another religion or way of life can you take these philosophies with you back to your religion or way of life? Yes. But people fear what they do not know or understand. So they are afraid to go deeper into the world of “stillness”. Therein lies the problem. At the beginning of my yoga practice yesterday, the teacher said “Be still, and know that I am God.” When we are practicing our stillness…or just being, we are closer to who we are really meant to be.
This is where Deepak Chopra’s The Seven Spiritual Laws of Success come into my practice. One of the absolute hardest steps for me to apply to my life is to take time each day just being silent. Some people who know me are laughing…my parents I’m sure. But what this really means is that I have to work at just being. That seems like such a small thing…to just be. To sit alone in silent meditation actually means that you clear your mind. As thoughts come and go you focus on the moments between the thoughts. Not the thought itself. Pretty soon you are focusing on those in between moments for even longer and one day, you will come to realize that your thoughts have finally stilled.
And therein lies my problem. One thought produces one more like it, then it spirals, and so on and so forth. So I am working on this ability to carry stillness with me. Chopra writes “Through silence, through meditation, and through non-judgement, you will access the first law, the Law of Pure Potentiality.” Many times people say “Oh I’m not judging…but blah, blah, blah.” If you have to say you are not judging, here’s a hint, you might be. But that’s okay for now. Work on letting that thought go and focusing on something positive you learned from that situation. If your mind is constantly on re-wind and you are judge, jury and executioner of your thoughts and you can’t let the negative go from a situation, you need meditation in your life. You know it costs less than therapy…it does.
Here is an introduction for you to watch:
So I had a post all ready to go yesterday in my head…but here’s the thing. I feel like the only motivational thing I did yesterday was pry myself up off the couch, take a shower and say to myself, self, get out the door to yoga…ignore that it is cold and rainy and extremely dark. JUST go. Then I said to my husband, “If I tell you I don’t feel like going to yoga because I ache/hurt, tell me to go anyway. No matter what I say.” I am positively sure this will come back to haunt me.
So I knew I made the right decision when I started to release the pain in my neck, shoulders, lower back and hips. I absolutely love restorative yoga for my aches and the slow, no pressure, use as many props as you need to hold the pose feeling goes with fibromyalgia. I am encouraging as many people who need healing to go to this type of class. By healing I mean any kind of healing. Seriously. But you have to go all in. You can’t try to fool yourself. You can’t make excuses. It doesn’t work that way.
So I have my calendar set up with my appointments. I have my yoga nights on there…and soon my yoga weekends. I can’t let my mind stop me from doing something I know is good for my body. I can’t let weather, aches, pains, and any other excuses stop me. I have made a decision and I have a goal. I have to release the outcome as I have done my part. Small steps people. Small. Steps.
Sometimes I meet people and I think, if only there was a way I could change their thoughts. Well, the truth is, they have to want to change their thoughts. I asked a friend for a suggestion on her favorite positive affirmation video, and she sent me this link. I think you will enjoy it, so just watch without any negative thoughts entering if you can:
So, ignore the part about “Law of Attraction” if that isn’t your thing, but seriously, positive thoughts do change your day. Get to the part about 2 minutes 50 secs in and think about what things you have appreciated today. If the answer is none, well then, you just basically solved my question.
Practicing Trancendental Meditation is said to be a good way to relieve stress. The TM technique involves the use of a sound or mantra and is practiced for 15–20 minutes twice per day. For example, let’s say you are dealing with people who just don’t get “it”. Whatever it is. You can close your eyes while speaking to them and begin your meditation. I had to do this today when speaking with someone who deals with medical things. I had to explain that genetic conditions such as mine do not have magical “cures”…that basically that’s why the gene was inherited. If it did have a cure, I think I’d know about it by now as I would love to stop having pints of my blood taken every 6 months. So, in order to deal with this yet again, I had to go to my happy place. My place where my mantra was “Don’t slap the stupid people. Ohmmmmm. They can’t help it. Ohmmmmmm. They don’t know any better. Ohmmmm.” Repeat.
I have had to go to this place often in the last 17 years. When I then had to call the next doctor’s office to schedule my phlebotomy, the nurse said they needed to do more blood work. I said, no actually, you don’t. I just had blood work done, and the doctor told me if I was experiencing problems to call back and make a phlebotomy appointment. So, here I am experiencing “problems”, calling you to get things straight. Well, this went on for a while because she insisted he said I had to have more blood work done before I could have my pint taken. I calmly explained that it appeared I was breaking out in porphyria bumps and that most people with hereditary hemochromatosis don’t have the two fold warning system like I do to let them know it is time for the vampire visit.
By the time I was done with this, I had worked myself up again. I called my husband and my mom to vent because it’s either that or throw things…or cry. Which gets me absolutely no where. Then I am reminded of other people who are worse off and I feel bad about getting upset, but it can’t be helped. I thought back to my earlier conversation with a lady I just met. Her daughter has one of my conditions, fibromyalgia, and can’t work, get out of bed some days or drive a car. I am one of those people who really tries to think of other people when I feel bad. I really do. It makes me want to push harder to show these people that life can be lived. There is hope. There is a way out of this, and we just have to believe. Sometimes, we are going to have to put up with the “stupid” things in our lives. Whatever that is. Irritants, things that challenge us. Make us feel frustrated, mad, or ready to throw in the towel. Push past that to the other side. You can do it.
I don’t even know how to begin this post. I am tired of being tired. I’ll start there. 17 years. Seventeen years. Maybe it doesn’t sound like a long time. I don’t know. Skin that burns in the sun, genetic blood disorder that causes organs to fail if iron levels get too high, autoimmune disease that causes food to act like tiny attackers as well as a host of other issues, virus that flared every bone in my body to pain, and then finally, the diagnosis of perpetual pain without a cure.
So tonight, my invisible disease friends, my brethren who look young, happy, normal and perfectly fine on the outside, but are dying on the inside daily, I wish you patience. Because I know that I need it in my life and lack it. I lack the ability to find anything remotely nice to say some days and can’t seem to help it. Today is one of those days. It is one of those days I wish everyone I come in contact with, I could touch like some sort of cool X-Men power and they would feel what I feel. Everyone.
People who sound frustrated with me because of my questions don’t realize that I have to plan everything out according to my level of pain. I have spent the last year weighing what was most important and trying to do that first. I would like them to know how I feel on any given day. People who ask me questions even though I have explained everything and sent them copies of things to read, yet ask me the same thing, they need to know that stresses me out. Lastly, people who don’t have their stuff together, yet expect me to. They stress me out.
I would give all of the above people a good ole’ magical touch. How do you like me now? Oh. You get it now? Okay then.
This ridiculous rambling tonight was brought on by the letters W, T, H.
When they tell you not to bite off more than you can chew…you need to listen. The problem is, maybe “they” have never been broke. Maybe “they” have never been in debt. And I’m definitely thinking “they” don’t know what it’s like to worry and/or stress over whether or not you will have enough to pay for groceries. Sometimes, people have to do what they must in order to survive. Even if this means adding to their stress.
Ways to survive this type of stress are to take breaks during your work day. I read recently that you should set a timer. Every 50 minutes or so. Ha. But I think that would help me out with my current craziness because then I would realize I have not eaten lunch…that e-mail can really wait.
Go to yoga. I say this quite frequently. But seriously. Either that or learn to meditate…unless having some type of wine port attached is legal. I don’t think it is yet.
If I was the boss, wait I am the boss of myself, sort of, I would make mandatory no work after 5 p.m. ever. No work on weekends, ever. And that sort of thing rules. I really wish I could do that to myself. Why is it people who work from home end up working more??? Someone forgot to mention that to me.
Someone smart in your company needs to streamline the processes for other people. I really liked to make things easier on other teachers when I was a teacher. I liked group planning because IF it ran the way it was supposed to, oh yeah it didn’t, but if and when it did on rare occasions, you would really come out with like a version of the easy button. EVERY company needs this. I can’t stand it when there is no version of something that everyone needs to use. I end up creating my own documents for future reference.
So that’s my motivational tips for today. If there is an easy button, use it folks. Just use it.