I’ve regressed again. For almost two weeks after the Worst Headache, I felt stronger and had more energy. My pedometer showed this many steps over the days:
That last one was yesterday. I didn’t do my stretches for the first time in ages. I haven’t walked laps of the house in the last two days. I’m hurting. I’m still having a hellish time with the CPAP. Not only at night when I have problems for all the previously-mentioned reasons, but during the day I’m dealing with IBS issues from the air that I swallow. They call it aerophagia and I’ve got it bad. Within minutes of putting the mask on my face, I have pains in my stomach from the trapped air and then, the next day, I have pains in my lower abdomen as it slowly, slowly moves downward.
I’m sleeping 6 or 7 sporadic hours and I can’t adequately articulate the stiffness in my body. Everything is inflamed: muscles, throat, lungs tight, eyes swollen alarmingly… A week ago, I said to my husband: “Maybe it’s gone…” It’s quite pathetic that I still think that way ~ that a few better days equal recovery. Yesterday, I couldn’t stop crying ~ not from my current state or the loss of my former life, but from the fear that I will get worse. There are so many people with ME that are so much more disabled than I am and I am terrified every minute of every day that I haven’t seen the worst of this. As I start to go backwards, I think, What if I keep sliding? What happens if I’m unable to take a shower or get to the bathroom or sit up or talk? What if I have to go to the hospital and I contract MRSA or sepsis? I know it sounds like I need anti-anxiety medication ~ and I probably do ~ but I refuse. Meds create more concerns for me. Is it a coincidence that I started to feel better during my wash-out period?
I realise that fear is debilitating and can create a self-fulfilling prophecy, so I work very hard moment-by-moment to be mindfully in the here and now. I truly do. It is my new career: You are alive. If you are breathing, there is more right with you than wrong with you. You will be okay, no matter what. You have support. I meditate into the fear and breathe out of it. I tell Mr. Fear that I understand his concern, but that he needs to take a seat and be quiet now because I have everything under control. But it is fucking hard. I’m not sure I DO have it under control. I think, actually, this disease is in control. When I feel this way… as symptoms intensify… I want to start screaming. I want to scream my fear as loud as I can. I want to wail and bite and punch and kick. If I unleashed it, I feel my fear could fill the whole world, ricochet off of mountains, travel up rivers, raze cities to the ground, create tsunamis and tectonic shifts and tip the earth off its axis.
I read somewhere that worrying is like praying for things you don’t want to happen. Yesterday, my massage therapist said, “Just keep saying: I am strong. I can do anything. I’ll get better.” So… deep breath. It’ll be slow, but I will get stronger, I will get better. I’ve just never been a very patient person.
You are amazing! You are so incredibly strong and getting more knowledgeable by the day! Thank you for revealing your soul, speaking your truth and reaching out to Universe – I hope you continue to find more and more truth.
With deep graditude,
Thank you, Carol! What a surprise to see you here… I hope you are doing well ~ better than ever. You deserve it! Hope to see you one day soon. 🙂
I’m so sorry you slid back again. That is scary every single time.
It may just be that right now, your body can only handle 2000 steps and still continue to go upward. But I know that it can be hugely frustrating to have to limit yourself when you’re feeling okay. I know that I still find it heartbreaking every time that I think maybe I’ve regained some capabilities and then find out it was just the usual push/crash cycle.
It’s such an unfair part of this illness that it drags us down so breathtakingly quickly, and then the climb back up is so painfully slow.
Curiosity, I keep looking to see if you’ve posted anything new. I certainly don’t want you to feel any pressure to “perform” for your readers, but I want you to know that we are thinking about you and I can’t wait until you are strong enough to write as much as you want, but, more importantly, live as much as you want. ❤