Going Home
The first time I was able to go home for an afternoon from the hospital was so exciting- I really couldn't do much- just the process of getting out of the hospital and to my parents house was so exhausting that I had to have a sleep when I got there. Then it was a weekend at my parents house, that brought on different challenges, like I could lift the glasses at their house as they were to heavy (because they were glass and not paper), getting up and down the stairs (this was exhausting and would cause me to have to have a sleep), trying to cut food with a knife and fork. There were many every day challenges that I was not used to. My senses were still off, I was putting my feet in a water foot bath and my godmother came to pour water in it and I thought it was boiling hot water- it was only lukewarm- for that reason I was not able to have baths and I had to make certain when I got in to a shower that I tested the water on another part of my body (like my upper arm) to make certain it wasn't to hot. The first weekend I was at my parents house I thought- ok great- I'm going to have a shower, dry and style my hair and put on my makeup- that took me about 5 hours to complete and then I had to go have a sleep afterwards. I had to keep taking breaks while I was trying to do each step. At that point I still wasn't able to stand up in the shower and my mom had to shave my legs for me as I wasn't able to manage to balance and do that and lifting my legs was challenging as they felt very heavy.
By the time I got to the rehab centre I was lucky as they allowed me to go home and spend the night at my parents every night. I would be at Stan Cassidy for 10 am and start my therapies - I would have naps in between therapies and then when I got home in the late afternoon I would sleep for a few hours.
Then came the day that I was able to go home (to my parents house where I stayed for about a month). This brought on new challenges, as I had no schedule anymore, for the first week or two all I did was sleep. Then I decided to get a therapist who could help me with an exercise program (since I was no longer going to the physiotherapist at the rehab centre). The physiotherapist had given me exercises to do and we worked on those. I always laugh as when I and others picture physiotherapy you visions of pushing yourself so hard- go, go, go- but with GBS it's not like that at all- your body tires so easily as even at rest your body is working harder then anyone elses trying to regenerate your nerves that you fatigue very easily and as well you are not able to do weight bearing exercises as you don't not want your muscles to tear as that takes up extra energy that you don't have.
One of the therapists explained it to me like this- everyone has a battery of energy and normally everyones is half full- so if you push yourself you still have half a battery left, but in the case of GBS your battery is completely empty so if you push yourself you have nothing left- something I would learn over and over again.
It was soon November and December and Christmas was on the way- I was doing stuff like going to the mall to get gifts, baking and doing all kinds of extra things. My exercise and therapy rarely got done. I would go for a day or two and push myself and then crash for about a week - meaning I couldn't do anything- I would sleep most of the days away and when I was awake not be able to do a thing. After Christmas and New Years I completely crashed and slept for weeks at a time.
Coming back to my place had its challenges as well, I had to make my own meals, clean and basically do everything- when I was at my parents I just slept and watched TV. My parents didn't want me to go back to my house but I insisted and looking back it might have been smart just to stay at their house until after Christmas.
I would get bursts of energy and go with them- I have now learned that when I get those I don't do more I just try to do the same amount.
I kept a journal on and off, so it is hard to remember all the ins and outs but one thing I know being tired is very hard- and when you look good on the outside people probably think you are just being lazy. You have to celebrate the small accomplishments- like being able to pick up the water jug, driving for the first time, all those kinds of things.
By the time I got to the rehab centre I was lucky as they allowed me to go home and spend the night at my parents every night. I would be at Stan Cassidy for 10 am and start my therapies - I would have naps in between therapies and then when I got home in the late afternoon I would sleep for a few hours.
Then came the day that I was able to go home (to my parents house where I stayed for about a month). This brought on new challenges, as I had no schedule anymore, for the first week or two all I did was sleep. Then I decided to get a therapist who could help me with an exercise program (since I was no longer going to the physiotherapist at the rehab centre). The physiotherapist had given me exercises to do and we worked on those. I always laugh as when I and others picture physiotherapy you visions of pushing yourself so hard- go, go, go- but with GBS it's not like that at all- your body tires so easily as even at rest your body is working harder then anyone elses trying to regenerate your nerves that you fatigue very easily and as well you are not able to do weight bearing exercises as you don't not want your muscles to tear as that takes up extra energy that you don't have.
One of the therapists explained it to me like this- everyone has a battery of energy and normally everyones is half full- so if you push yourself you still have half a battery left, but in the case of GBS your battery is completely empty so if you push yourself you have nothing left- something I would learn over and over again.
It was soon November and December and Christmas was on the way- I was doing stuff like going to the mall to get gifts, baking and doing all kinds of extra things. My exercise and therapy rarely got done. I would go for a day or two and push myself and then crash for about a week - meaning I couldn't do anything- I would sleep most of the days away and when I was awake not be able to do a thing. After Christmas and New Years I completely crashed and slept for weeks at a time.
Coming back to my place had its challenges as well, I had to make my own meals, clean and basically do everything- when I was at my parents I just slept and watched TV. My parents didn't want me to go back to my house but I insisted and looking back it might have been smart just to stay at their house until after Christmas.
I would get bursts of energy and go with them- I have now learned that when I get those I don't do more I just try to do the same amount.
I kept a journal on and off, so it is hard to remember all the ins and outs but one thing I know being tired is very hard- and when you look good on the outside people probably think you are just being lazy. You have to celebrate the small accomplishments- like being able to pick up the water jug, driving for the first time, all those kinds of things.