When my kids were born I immediately started using a travel mug to drink my morning coffee. I just figured a lid would be a good way to protect my coffee from my kids. Oh, I'm sorry I mean protecting my kids from the coffee. Then I got to realize that I like it that way because I can take my time and it would stay hot. In the hospital they often woke me up at 4 o'clock in the morning for medication or just to make holes in my arm and then I wound up being awake until they brought breakfast at 8 AM. I had no problem ingratiating myself to the nurses so that they would bring me coffee from their personal pots. But I didn't want to make them stand there and bring it to my lips so I drank it with a straw.
I kinda got used to drinking everything with a straw. I guess weaned myself off of using straws for cold drinks. And a while back I announced my happiness when I was able to hold a beer with my hands. But at home I kept a straw in the coffee. I'll have to admit it never occurred to me to stop using the straw because I had so many in the house. But last week I had one left and I figured I wouldn't buy any more straws. And so this morning I just drink my coffee out of my travel mug like a regular person. I think I'll be using the travel mug for a long time. I like my coffee to stay hot and since it takes all ten fingers to hold the mug, I don't need to burn myself.
One more small step towards getting my regular life back.
I didn't think I'd be updating this again for a while, but today I had a little breakthrough. Using a credit card is a lot easier than cash because paper money and coins tend to fall out of my hands. It's much easier to just hand my card to the salesperson. But sometimes you have to handle the card yourself. In those cases,using the chip reader is a lot easier than swiping because it's easy to stick the card in the slot wait a moment and then pull it out.
But until today, the ATM machine at my local bank didn't really work for me. You have to insert the card and pull it out rather quickly. My fingers haven't been that good at pulling it out rather quickly. This challenge hasn't stop me from trying, but if I try to many times the card will not work anymore. But I'm not shy, I had no problem going into the bank and asking the nice manager for some help.
But today, I forgot that it was a challenge. I just walked up to the machine stuck my card in and out in the proper amount of time and then press those little buttons and got my hundred dollars. #FUGBS
Update: December 10, 2016........................................................
As a review, I walked into my doctor's office on May 7, 2014. She set me straight to the hospital with a little note that said I had Guillain-Barré syndrome and by that evening I was unable to stand on my own. When you can't stand you can't stand in front of the toilet. So in the hospital, and in rehab, and for a while after I got home, I had to use a smooth wooden plank to slide from a wheelchair onto a rolling commode. A few months after I got home I was able to keep the commode over the toilet and get myself there with a walker. But all this time my hands were healing much slower than my legs so when eventually I was able to get on and off the regular toilet I was still unable to cross the finish line and use toilet paper
So while I came home from rehab on September 18, 2014 I haven't been independent in any sense of the word. It was about a year before I was able to use a fork and a spoon myself, or bathe myself, or brush my own teeth. But in the year beginning the summer of 2015 I slowly gained the ability or purchased the tools so I can handle most of the activities adults take for granted. I had the round doorknob replaced to the back entrance of my apartment building with a lever and a pushbutton combination lock so I didn't have to use a key. I also put a giant rubber band on my apartment door so I can pull it closed and got a funky keychain so I can get in and out of my own apartment without leaving the door unlocked. So basically, by the end of the summer of 2016 the only thing that kept me from spending my days alone like an adult was the fact that if I needed to use toilet paper I would be as they say 'Shit out of luck.'
So I figured out which bidet would work for me and had it installed. Then my wife and I were figuring out all the other little details that would need to be arranged for so we wouldn't have to pay someone to hang around with me all day. We bought a new coffee maker (I'm sorry planet Earth we got a Krups machine) .... Figured out how to leave the lids a little open so I can have lunch. I even asked the staff at the YMCA where I work out if they would mind helping me with some of the contraptions I need to pull the bars on some of the devices (When they smiled and just said "that's why we're here", I was overjoyed). One of the last little humps that I had a figure out how to get over was putting my own socks on. You wouldn't think that would be that hard except I still don't have the grip strength in my fingers to pull them up.
If you've been paying attention to my blog you would've known that on September 25 I fractured one of the little bones in the foot. I didn't need a plaster cast, but I did have to wear a boot that was secured with Velcro straps. Since the neuropathy in my hands hasn't healed as well as my feet I was unable to get that boot on and off. But earlier this week I was given the green light by the orthopedist to just take it easy wearing regular shoes.
So, exactly 31 months from the day I walked into my doctor's office and was told to hurry up and get to the hospital because you have a life-changing illness, I walked out of a different doctor's office knowing that I can begin to resume a normal life. This week I was able to say goodbye to the person that I had hired two years ago to help me do almost every activity I needed to do. Now, I can wake up, get out of bed, and do everything you do in the bathroom. I can make myself coffee, get dressed and leave the house. I could choose to go to the gym or take a bus or subway in a different direction. With a little bit of advance planning I can go into a restaurant and by myself lunch or go into a grocery store and bring some food home.
I can compare my disability to slavery and institutional racism. But I think I can appreciate what it's like to have your freedom restricted.
Fuck you GBS
I'm free at last
Update October 22, 2016 .....................................................
It's been a long time since I updated this post. Maybe too long. Maybe I should've bought a bidet months or years ago. But now I have one.
|Now that I purchased this model from |
Overstock this pops up as a Facebook ad.
So my dear reader, you only have to use the tip of your imagination to think of the indignities I had to go through about once a day because my fingers and wrists are is about as useful as a big of carrots.
Now, I can get on up whenever I want to go, as long as a home.
It might be a long time, if ever before I get to update this post again. But a lot of people only sit down on their own toilets....
..... And if anyone says I told you so, I'm you spend a few days at your place thanking you....
On the third to the last time I visited my friend Paul in hospice, I witnessed something no one should ever have to see. We were chatting for a while he asked me to hand him the buzzer for the nurse. We ran so many miles together he didn't ask me to leave because he had to pee. When the nurse came in he said he needed some help getting to the toilet. She then said something like, "We talked about that Paul, remember what happened last time, your legs are too weak, we have to bring you a bottle." Nobody should ever be in the room with someone who was told they already stood in front of the toilet for the last time.
Fast-forward a couple years and I'm in the intensive care unit this time. Remember, I walked into the hospital, but once I was there they did n't let me walk around too much. The morning of my second day I buzzed for the nurse and told him I had to pee. I made it to the bathroom but when they let go of me in front of the toilet I almost hit the ground. They said after this we'll bring you a bottle. In that moment I was with Paul again
For a couple weeks I was able to hold the bottle, and then neuropathy started to affect my hands worse. For four months while I was hospitalized and a few more months at home I couldn't even stand and be at the same time. Then for a while I was able to stand, but I didn't have the hands to deal with the rest of the process, so I still needed a person and a bottle. A couple months ago I was able to work out the process of peeing, but pants with zippers and buttons not so much.
Last night I decided to push the envelope a little. For the first time in almost 19 months I just got up, walked to the bathroom, took a leak, and came back to the living room without asking for help. This is big. This means, that if I wearing the right kind of pants I could use a public restroom by myself.
I need to give this one more update. And it's also time to describe some of the processes I had to go through in various hospitals. You don't really have to read this, because it is NSFF(not safe for work) and TMI (too much information)
When I went to the emergency room I was just wearing shorts and a T-shirt. I difficult to be moving. I actually get my shorts on for about five days in intensive care. Then one evening a couple of nurses aides came over and said hey you want to take a shower? I had been out of bed and for five days, and wasn't thinking much about showering but it sounded like a good idea. They put me onto a thing that was like a combination of a wheelchair and a beach chair. They rolled me into a little room that had a shower and then they peeled me out of my clothes. I said out loud goodbye dignity", because I actually sort floating away like a balloon into the hospital For the past year and a half I've been struggling to get it back.
|Where do the boy parts go?|
So.....I'm in intensive care and having gotten out of bed or pooped in five days. They bring over this chair with a little hole in it and tell me that they will help me get on it. I look at it and say "but where do my boy parts go?" The nurse says don't worry about it do what you gotta do. Okey-doke he but IP when I poop. So they hit me up on that thing, but as I predicted I became a frigging fountain. Sorry.
The constipation all effects of the oxycodone lasted for about a month. I stayed on a once a week schedule during that time. In acute rehab they had better rolling commodes with my boy parts, and they actually rolled me over a real toilet. But the first two out of three poops I had at Rusk required a plumber after I was done. I don't know about you, but have ever were able to look back and say holy shit that was the biggest poop I ever had. Well, I looked back and four turds and each of them was the biggest crap I ever took in my life.
So in the spring I was able to pee standing up. It was really exciting to recycle that portable uranal.
A few weeks ago I started up Occupational Therapy again. It's great. I'm just ask questions like what do you want to do that you haven't been doing. There's been so much I've been afraid to try, but lately I've learned that I can yes drink from a glass, no more beer through a straw.
The third week of OT I said that I didn't know if I could get up off a regular toilet. So we tried it in the therapy gym. Without holding onto anything and without taking my pants down I easily sat down on a toilet. And then I got right back up! FUCKING WOW.
Yeah, I still need a little help in the bathroom with those things that require fine motor skills from the fingers. But raised arm commodes and urinal jars are behind me. (Pun intended)
life's been getting better, been spending four or five hours out of the house it any given time. I just have to make sure I go before I go.
April 2015 ...................................
I wrote this post below back in August when I was in rehab. Lately, I've been posting about my progress how far I can walk the fact that I can handle a flight of stairs now. But my whole day revolves around personal needs that I need help with. I don't need a sliding board anymore, but I can't just go anywhere.
Written from rehab in August 2014
Sometime in the next 24 to 36 hours you're going to feel the need to go to the bathroom. You're going to get up, go to an appropriate place, take off an appropriate amount of clothing, sit down for an appropriate amount of time, and when you're done you're going to clean yourself. Hopefully get up and wash your hands leave the room and move on with life.
If you are a believer thank your god that you can do this without pressing a button, and calling for help, using a sliding board and a commode chair that was specifically adjusted for your height. If you're not a believer just don't take taking a shit for granted.