When enough is enough
Today's post comes to me from a conversation I had with someone on Facebook. Recently in the CIDP group I'm a member of, a post was made asking about people with CIDP that have had to rely on a wheelchair. I posted that I was in a chair for roughly 2 years but have been walking for the last 5. A woman named Marjory (I hope I spelled that right) sent me a message asking what type of exercises I did that helped me be able to walk again. I honestly can't remember any specific exercises I just know most of what I did I did on my own. Insurance didn't pay for much physical therapy & Lord knows I couldn't afford a gym membership.
The most therapy I had was in rehab & that was a very difficult time for me mentally so it really wasn't a lot of help. I got the basics, flex your muscles as much as you can as often as you can. Make them remember how to work. Mostly rehab taught me how to use a slide board, which at the time didn't help me mentally, because to me. learning to use a slide board meant, give up on the thought of walking again. I didn't really understand that until now, I just knew I was so MAD while I was in rehab. I hated everyone & every thing except, My mom, dad, brother, my sunshine & Peach. Oh & my 2 cats I had at the time.
I believed that God hated me & the feeling was pretty much mutual. I kicked out countless people from the local church that came by to visit. Cause who wants THAT when God hates you? I know people feel the need to "preach" to you when you are having a crises of faith, but I honestly feel that was something I needed to work out on my own. I didn't need someone who didn't understand my diagnosis or even know me, getting into my personal space & my mind is my personal space unless I invite you in (like in my posts). I wasn't worried that if I died while I felt God hated me & I hated her that I was going straight to hell. That isn't the kind of God I believe in. The God I believe in loves you no matter what, like a parent. You can tell your mom you hate her till the cows come home & she will still love you & do anything for you. She will still die for you no matter what. My God is a mom. That's why most of the time I refer to God as a her. Jesus was a man who died for us, but he was not God. It's just how I feel, please no one get offended.
Anyway getting back to my point. After I got out of rehab I was in & out of the hospital for months on end. Some of those times physical therapy was ordered sometimes it wasn't. Sometimes I was "discharged" from therapy because insurance wouldn't pay for more. They paid like $1,200 a month & anyone who has been to therapy knows that's like 6 visits & 2 visits were wasted on "new patient intake" & discharge so that left 4 visits to actually work on getting better. During those 4 visits I noticed a trend, the therapist would push me too hard & me not knowing any better at the time I did what I was told (most of the time). For anyone thinking "well that's what a therapist is supposed to do" you're wrong. A therapist is supposed to learn about the patient & either their injury or their ailment, be it stroke, brain injury, CIDP/GBS & so on.
The problem in that lies in the FACT that most therapist don't know jack about CIDP. You can not push a CIDP patient to the point that they are exhausted. "no pain no gain" does not apply. When we say we've had enough, we've had enough. Every time I push myself too hard I pay for it. One of the things with CIDP is that your endurance is cut to less than half of what you had before you got sick & you don't bounce back quickly. If on Monday I pushed myself too hard in therapy I couldn't get out of bed on Tuesday & Wednesday then back to therapy on Thursday where I couldn't do half of what I did on Monday. Then the therapist would go all drill instructor on me & we would wind up in a battle of wills, till my mom (who was always there with me) would just load me up & leave.
We didn't know back then that by none of us understanding the depth of the exhausting aspect of this disease that we were causing more harm than good by pushing me. I wish I had known more about this disease back then. Back then I couldn't even find anyone who had had it to learn from. I searched the Internet & could find the GBS foundation & the CIDP USA website but they didn't have the depth of information I needed. There wasn't any blogs or support groups like there is now. It wasn't until I found my living angel, Dr Chichkova, that I began to understand my disease. I still don't understand a lot, doctors don't understand a lot. What works for one doesn't work for another. One patient will have 1 "episode" in their lifetime & others will have them a few times, then there's a lot of us that if we aren't on meds to control them constantly, we will constantly have them. I fall into the latter category. If I don't have my IVIG on a regular basis, every 3 weeks for me, I can feel the first signs by the end of week 5.
I have learned the signs of when I'm getting to the point that I'm pushing too far & I STOP. What ever it is I'm doing I stop & rest. If we had known that maybe things in therapy would have gone better. So if you have CIDP & you're in therapy or just exercising on your own, learn when to say enough for today, because if you don't, tomorrow you may not have the strength or energy to get out of bed.
In case you're wondering, God doesn't hate me anymore & I no longer hate her. It only took a few months to get back on good terms. :)
Till next time, believe in the magic of life.
Cheryl
The most therapy I had was in rehab & that was a very difficult time for me mentally so it really wasn't a lot of help. I got the basics, flex your muscles as much as you can as often as you can. Make them remember how to work. Mostly rehab taught me how to use a slide board, which at the time didn't help me mentally, because to me. learning to use a slide board meant, give up on the thought of walking again. I didn't really understand that until now, I just knew I was so MAD while I was in rehab. I hated everyone & every thing except, My mom, dad, brother, my sunshine & Peach. Oh & my 2 cats I had at the time.
I believed that God hated me & the feeling was pretty much mutual. I kicked out countless people from the local church that came by to visit. Cause who wants THAT when God hates you? I know people feel the need to "preach" to you when you are having a crises of faith, but I honestly feel that was something I needed to work out on my own. I didn't need someone who didn't understand my diagnosis or even know me, getting into my personal space & my mind is my personal space unless I invite you in (like in my posts). I wasn't worried that if I died while I felt God hated me & I hated her that I was going straight to hell. That isn't the kind of God I believe in. The God I believe in loves you no matter what, like a parent. You can tell your mom you hate her till the cows come home & she will still love you & do anything for you. She will still die for you no matter what. My God is a mom. That's why most of the time I refer to God as a her. Jesus was a man who died for us, but he was not God. It's just how I feel, please no one get offended.
Anyway getting back to my point. After I got out of rehab I was in & out of the hospital for months on end. Some of those times physical therapy was ordered sometimes it wasn't. Sometimes I was "discharged" from therapy because insurance wouldn't pay for more. They paid like $1,200 a month & anyone who has been to therapy knows that's like 6 visits & 2 visits were wasted on "new patient intake" & discharge so that left 4 visits to actually work on getting better. During those 4 visits I noticed a trend, the therapist would push me too hard & me not knowing any better at the time I did what I was told (most of the time). For anyone thinking "well that's what a therapist is supposed to do" you're wrong. A therapist is supposed to learn about the patient & either their injury or their ailment, be it stroke, brain injury, CIDP/GBS & so on.
The problem in that lies in the FACT that most therapist don't know jack about CIDP. You can not push a CIDP patient to the point that they are exhausted. "no pain no gain" does not apply. When we say we've had enough, we've had enough. Every time I push myself too hard I pay for it. One of the things with CIDP is that your endurance is cut to less than half of what you had before you got sick & you don't bounce back quickly. If on Monday I pushed myself too hard in therapy I couldn't get out of bed on Tuesday & Wednesday then back to therapy on Thursday where I couldn't do half of what I did on Monday. Then the therapist would go all drill instructor on me & we would wind up in a battle of wills, till my mom (who was always there with me) would just load me up & leave.
We didn't know back then that by none of us understanding the depth of the exhausting aspect of this disease that we were causing more harm than good by pushing me. I wish I had known more about this disease back then. Back then I couldn't even find anyone who had had it to learn from. I searched the Internet & could find the GBS foundation & the CIDP USA website but they didn't have the depth of information I needed. There wasn't any blogs or support groups like there is now. It wasn't until I found my living angel, Dr Chichkova, that I began to understand my disease. I still don't understand a lot, doctors don't understand a lot. What works for one doesn't work for another. One patient will have 1 "episode" in their lifetime & others will have them a few times, then there's a lot of us that if we aren't on meds to control them constantly, we will constantly have them. I fall into the latter category. If I don't have my IVIG on a regular basis, every 3 weeks for me, I can feel the first signs by the end of week 5.
I have learned the signs of when I'm getting to the point that I'm pushing too far & I STOP. What ever it is I'm doing I stop & rest. If we had known that maybe things in therapy would have gone better. So if you have CIDP & you're in therapy or just exercising on your own, learn when to say enough for today, because if you don't, tomorrow you may not have the strength or energy to get out of bed.
In case you're wondering, God doesn't hate me anymore & I no longer hate her. It only took a few months to get back on good terms. :)
Till next time, believe in the magic of life.
Cheryl
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