Sunday, July 10, 2016

CIDP and Me - It's the Little Things

I'd like to start by clearing something up - I am actually in a really good place right now in terms of my physical recovery and mental state. I know that my past two posts have been rants, but I wrote them more for the comic value of their absurdity than anything. The past month or so has been really good. My energy continues to be high, I'm getting out and about more, and I can hardly keep up with the gains I'm making with my legs. Sure, there are annoyances, but that's life.

Today I will stay away from ranting and bring you up to speed with my ongoing physical recovery. I cannot stress enough what a SLOW and LONG process this is. Who knew how many delicate things need to come together in order for us to do something that most of us do without any thought at all - stand up and walk. It's amazing really. It should be so simple, the way we all just get up and go. But, rest assured, it is not.

I have reached so many milestones over the pat month - simple exercises and movements that I dreamed of being able to do while in rehab. I can now kick my foot out while seated, I can do a straight leg lift on my back and stomach, I can let my knees fall out and bring them back together, I can lie on my back and slide my legs out to the side and back in again. All of these movements were simply not there and now they are. Some are easier than others and some work better with one leg or the other but they are there. This means the nerves are reconnecting and the muscles can start to regrow. It is very exciting and I really hope it continues. It has not yet translated into an independent stand or an easier time trudging around the physiotherapy room with the walker but it will. It has made getting around and in and out of the chair easier, which is a nice bonus. I have regained the use of my hands to carry things as I can now push myself around the house using my feet. A little thing like being able to carry a cup of coffee from the kitchen to the living room can really improve my mood.

All of this is good. Really good. It is also very motivating. I spend so much time working on my exercises and testing my limits that my physiotherapist warned me not to burn myself out. It's hard to keep that in mind but she is right, of course. It's all about finding a balance - giving my body the rest it needs to regain strength and muscle (not to mention nerve connectivity) while making sure each muscle group is worked and stretched daily. I have started breaking my exercises up throughout the day. I do some stretching and simple things when I wake up, a few hours later I'll do a few more exercises, ending the day with stretching and some yoga. It seems to be working. I also picked up a neat bike thing that can be put on a table for an upper body cardio workout (using my hands to push the pedals around) or on the floor for my legs. I'm still pretty awkward with my legs but doing 5-7 min a day. Everything helps. In some ways I'm probably in better shape now than I have been in a long time. I'm certainly more disciplined about working out than I have ever been. I like to think that I will keep it up even after I'm on my feet again. We'll see how it goes.

A big part of the recovery is physiotherapy. I cannot overstate how important this is. I have had a series of great therapists who have all helped me get where I am. My current physiotherapist has only been working with me for 3 weeks and has already reworked my home program twice and changed our schedule from twice a week to three times a week. She helps me test my limits and makes sure I can safely complete an exercise before adding it to my routine. She also knows (better than I) what needs to happen for me to stand up on my own. I arrived at physio last week over the moon because my quads were working enough to do a straight leg lift while lying on my back. She was happy about that, but over the moon when she saw I could do the same on my stomach. Apparently from her perspective, quads are nice but hip flexors are key. In the end we were both happy, so all good. I'm really looking forward to having three sessions this week.

So there it is no rants, no absurd encounters - just a snapshot of where I am. Have a good week everyone!

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