It is very fitting that I just checked Jennifer Leigh's blog and she wrote a post on fatigue. This week has been scary with my fatigue issues. That's why I began researching Dan Neuffer and Jennifer Brea's work. It's hard to know what is happening inside our bodies and how to explain it. Jennifer talked about the fatigue in benzo withdrawal and her description fit my feelings to a T. I said to my husband the other day that I felt like my cells were not getting enough oxygen. They literally feel starved for oxygen. I tried walking but turned around quickly because it left me breathless and scared. It feels worse than when I was 9 months pregnant. My arms feel heavy and I can barely lift them, it feels like my limbs are made of stone.
That hasn't been a general complaint of mine as I am a HIGH energy person and the akathisia I experienced was the opposite of fatigue, but a whirling ball of energy in my core that was agonizing. The flip side of the coin is the bone crushing fatigue that Jennifer just referred to in her blog. It was helpful to read that, of course, I am not the only one, and I pray... that it's nothing more serious. The fatigue was SO bad my eyes and head were almost nodding off the other day, and yet there is no rest. It is torture epitomized.
I have a friend who is determined and walks everyday in benzo withdrawal. Rain or shine. Snow or sleet. She's walking. She's tough.
I used to be like that too. USED TO. But now I feel that when I push myself, I actually am doing damage. I feel sick for days.
The other day I challenged myself to put mind over matter and do an exercise routine with my neighbor. I felt literally breathless and depleted this last week. It was a mistake I won't be doing again. Not for a long time.
It was 30 minutes of 'cardio'. No biggie right? I almost collapsed while doing it and felt 80 or 90 years old. For a fitness freak like me this is horrifying.
I am on another medication which could be causing that level of fatigue -it's just hard to know.
I have been researching various things--hyperbaric oxygen chamber as they use it for traumatic brain injuries, and this is one after all isn't it?
I have been using a supplement Geraldine Burns was kind enough to share with me called Kyani. I am not sure what's working and what isn't but it isn't hurting and a woman named Pam Armstrong who worked for CITA felt it really helped people in withdrawal, particularly to avoid protracted withdrawal.
Today was a busy day. Maybe that's a good thing, maybe not. I don't know anymore what is good or bad.
To my children I appeared like a normal mother. I forced myself to make them lunch today. And dinner. They loved it. Pasta and butter and ham with some corn. Keeping it simple. I was happy to take them across the street to their friend's house. I am trying not to discuss this with my friend's any longer but my friend could see the weariness on my face. I am fighting hard today.
I have decided that each day (before I head off and hit acute) I am committing to doing one small thing. Today it was grocery shopping and it took all my effort to do that. I watch others as they breeze through the grocery store, stop and chat, in their workout clothes, sweaty, and strong.... so easy, so simple. The little things we take for granted. To walk and talk and do things with ease and with pleasure. This is a hidden pain that others are going through all over the country and the world. Unacknowledged.
I am trying my best to keep going before the fall....I have only cut .12 this month and am gearing up for the next .3. I am heading into it and feel determined but the akathisia will knock me off my feet and I am not eager to greet it. I want to punch and push this reality away from me.. I wish it were so simple.
Jennifer also mentioned gut issues (my primary issue) and bladder issues and all the rest...
It's a boat load of fun. I am very ready for this to be done. I can deal with those as I had them pre benzo. That seems like child's play compared to this. Honestly. A little bloat and bladder pain? whew. Nothing compared the the big hitters like terror and akathisia and bone crushing fatigue and all the nerves awake in your body. I can handle it, bring it on.
I was reading Jack Hobbs (?) book called the Benzo Book. Rather I was skimming it because I can't read a thing right now. One thing that made me laugh was that during his withdrawal which lasted over 3 years (although he seemed to do better as he was on the lower doses but he wasn't kindled at all) is his wife each day would ask how he was doing and feeling. Each day he responded with a different level of misery. His wife stopped asking and had to go do her own life to protect herself. I understand. That's why the community of friends and others going through this is so very helpful. He made it! So can we.
What he said was that it wasn't that he was being 'negative' as he had always been an optimistic, positive and fully functioning person. It was the very nature of this brain injury that literally prevented him from responding in a positive way whenever asked. He spent all those years in his home as a way to protect his nervous system. Something I wish I had done. The little stressors that I dealt with this year felt gigantic and actually caused literal shock and pain in my central nervous system. I don't understand how people who have reinstated actually make it off ok when I feel zero healing this year, only more damage. I must just GET OFF. We are all so different. Reinstatement didn't work for me. It was an absolute mistake that I regret.
Monday I meet with my disability review. Tuesday more doctors, more appointments to evaluate my immune system, my nervous system, my brain and more. I want to get on with the business of living not surviving and picking apart each body part with more questions and no more answers.
One day, I hope I can return to the level of health I had before, even though it was hardly ideal, it was more manageable than this. If I could wave a magic wand I would remove: my akathisia, terror, burning and nerve pain. Everything else is a manageable hell. Those four issues are unmanageable and I am powerless over them.
My new age self has kicked in and I have had my house cleared of negative energy earlier this week. We shall see. I need to keep the hope up and keep as positive as I can. One foot in front of the other.....
I had a good day with my children. They appreciated my lunch, dinner and taking them across the street. I got hugs from my babies today.
Slept until 10am (drug sleep but still)
I have a house full of healthy food
I took a shower.
Another day to be grateful for.
I am going to keep on trucking downward....
Someone who found themselves accidentally dependent and suffered an iatrogenic injury from medications that were prescribed. Sharing experience, strength and hope with others. This is written as a person on this winding path and NOT as a professional. Please contact a licensed professional for any medical/psychological care or advice. This is NOT a substitute for medical or psychological care. What is written here reflects my own personal experience ONLY.