It has been one of those weeks where I seem to have been busy, yet done nothing at the same time.
I have had a couple of clinic appointments. My thoracic surgeon, complete with the usual tests including chest xray. I was quite pleased actually, that my lungs were not looking any worse than normal. The way I have been feeling, I was expecting them to be a little more hazy.
That clinic is really just to keep track of things encase of emergency. Other than that, the surgeon is happy keeping me under his team, though there is little he can do. We talked about the last 6 months, complications and the future.
My other clinic was transplant clinic, which again was fine. Saw a doctor that I have not seen before. He seemed nice enough. Everything is fine with my liver, though he dosnt particularly like all the bugs breading in my lungs. There are currently 3 there, but he thinks I am pretty much colonized with pseudomonas and staphylococcus aureus. Which basically means, they now live happily in my lungs, without causing me many symptoms. The problem with that though, is that they are pretty much impossible to get rid of and can still be passed to others. That makes me risky to certain at risk people, like other transplant patients. But alas that is one I shall tackle at another time.
So overall, its just riding this whole throat thing out. Its amazing how many people, even doctors who are up to date with new changes, ask if my current transplant meds will cover me, should I ever get a tracheal transplant. The answer is no, because the tracheal transplant does not need the life time drugs as the body ends up recognising the trachea as your own.
I have been using my scooter as well, I wasnt sure if I would. But it makes such a difference. I had forgotten what it is like to enjoy being out. Usually, I limit how often I leave the house as it is so exhausting. And when I am out, I am often to tired with breathing to enjoy the time. But since using the scooter, I can look at stuff, I can enjoy going around a shop, I like being out of the house. I never realised how much effort I was putting into doing simple things like shopping, until I suddenly wasnt putting it in. Yes, I am still a little embarrassed to be out on it, but, its getting easier, and I look forward to being out now.
I even went out to Alton Towers yesterday. I am worn out today and have had a pj day, but I managed yesterday and I had fun. I got around all of the park, that I otherwise would never have managed.
Showing posts with label mobility scooter. Show all posts
Showing posts with label mobility scooter. Show all posts
Thursday, August 23, 2012
Thursday, August 16, 2012
Previous life and a big step.
Recently, I feel almost like a teenager again.
It is as if I am trying to figure out who I am and where I stand in the world.
Apart from my parents, there is nobody in my life now, that knew me before I got sick. Thats a very odd thought.
My youngest niece, she was a Toddler when I first ended up in hospital. She has never known me to work, or be active. Yet that was such a big part of me when I was younger.
I was the kind of teenager, who never slept. Summer holidays, I remember I used to just ride my bike around the town for hours of a morning, because my friends were all still in bed and I wanted to be active. A couple of weeks after I turned 13, I got a paper round and within a few months, I was running 4 paper rounds plus extras. I kept those right up until I was 15, when I manage to get a Saturday job handing out leaflets. 2 days after my 16th birthday, I started working part time in a shop in the city centre.
Not long after getting the job, I went on study leave from school as I was sitting my GCSE's. At that point I went full time in work, making sure I had the time for exams booked off. I travelled to the city everyday, half of them I worked, half of them I spent in the library studying. Every evening, I would get home, get showered and changed, then cycle to my friends house, where we would go out for a few drinks, before I cycled home at midnight.
I was always on the move, I was never home. When I was home, I often had music on in my room and danced to it. I used to think I was big at a size 14, but I was happy and more so I was healthy.
I wanted to join the army. My biggest ambition at one point was to go to Sandhurst. I had the grades, I was pretty fit, but I was working on getting fitter to get in. I knew I could take the discipline, I had lived with my mum for so long. How things would have been different if I had gone. Why didnt I go? Well at 16, you needed parental consent to sign up and alas my parents wouldnt have it. Oh how I argued with them over it.
By the end of the summer at 16, I had my own place, I worked full time and although part of me regretted not going to college, I enjoyed just being able to do what I wanted. Most of my money went on rent and bills, but I remember joking with a friend, on how to go out on a budget. We used to get ready, then do 40 min hike from my flat to the city. We would limit ourselves to £10 each on a night out. Often we came home drunk enough to need to climb the metal stairs to my flat on our hands and knees, often we had sobered up on the 40 min walk home.
These days, I often find myself berating myself, over being lazy, over not being more active and not working and not doing things I want to. It just takes some reminding sometimes, to say, I am not lazy by nature. And at the moment, when life is at a still, with nothing on the horizon, that is when I want to shout at myself and give myself a shake. But I know, deep down I am not lazy.
One day, I will be that person again. I am going to be the type of person who goes out jogging everyday. I am going to be the person who can fit so much into one day, that keeps on top of things.
But that is in the future. And I know that I can make it to the future, without getting through this patch now. Perhaps being slowed down, will allow me to truly appreciate being able to move.
And that is why, I have taken a huge step this week. One that I have been putting off for a long time. I purchased a mobility scooter this week. I always said no, because I didnt want my fitness level to drop and because they are generally associated with old people. But I am fed up of being so overwhelmingly exhausted by doing simple things such as shopping, that I gave in. I used to use a wheelchair, but its not fair to expect someone to push me. This way, I can find my own way around, it gives me back my independence. And that can only be a good thing.
People dont stare as much as I thought they would. Its me, who I find is looking to compare to others. Like when I see an old lady on a stick and I think, that must be harder than it is for me walking. But it is still differnt, her mind, spirit and body are all in the same place, she is at the point where a quiet life is what she wants. I cant compare myself or situation to someone that differnt.
Its still a big step and one that I am not going to jump easily. But for now, I know, that right now, is time for making the most out of what I can do, until a time comes when I can do more. I am working with perhaps 35% of what I should I have, with no real supportive treatments availble. So for now, its all about making the most. And this is perhaps just one way to do it.
It is as if I am trying to figure out who I am and where I stand in the world.
Apart from my parents, there is nobody in my life now, that knew me before I got sick. Thats a very odd thought.
My youngest niece, she was a Toddler when I first ended up in hospital. She has never known me to work, or be active. Yet that was such a big part of me when I was younger.
I was the kind of teenager, who never slept. Summer holidays, I remember I used to just ride my bike around the town for hours of a morning, because my friends were all still in bed and I wanted to be active. A couple of weeks after I turned 13, I got a paper round and within a few months, I was running 4 paper rounds plus extras. I kept those right up until I was 15, when I manage to get a Saturday job handing out leaflets. 2 days after my 16th birthday, I started working part time in a shop in the city centre.
Not long after getting the job, I went on study leave from school as I was sitting my GCSE's. At that point I went full time in work, making sure I had the time for exams booked off. I travelled to the city everyday, half of them I worked, half of them I spent in the library studying. Every evening, I would get home, get showered and changed, then cycle to my friends house, where we would go out for a few drinks, before I cycled home at midnight.
I was always on the move, I was never home. When I was home, I often had music on in my room and danced to it. I used to think I was big at a size 14, but I was happy and more so I was healthy.
I wanted to join the army. My biggest ambition at one point was to go to Sandhurst. I had the grades, I was pretty fit, but I was working on getting fitter to get in. I knew I could take the discipline, I had lived with my mum for so long. How things would have been different if I had gone. Why didnt I go? Well at 16, you needed parental consent to sign up and alas my parents wouldnt have it. Oh how I argued with them over it.
By the end of the summer at 16, I had my own place, I worked full time and although part of me regretted not going to college, I enjoyed just being able to do what I wanted. Most of my money went on rent and bills, but I remember joking with a friend, on how to go out on a budget. We used to get ready, then do 40 min hike from my flat to the city. We would limit ourselves to £10 each on a night out. Often we came home drunk enough to need to climb the metal stairs to my flat on our hands and knees, often we had sobered up on the 40 min walk home.
These days, I often find myself berating myself, over being lazy, over not being more active and not working and not doing things I want to. It just takes some reminding sometimes, to say, I am not lazy by nature. And at the moment, when life is at a still, with nothing on the horizon, that is when I want to shout at myself and give myself a shake. But I know, deep down I am not lazy.
One day, I will be that person again. I am going to be the type of person who goes out jogging everyday. I am going to be the person who can fit so much into one day, that keeps on top of things.
But that is in the future. And I know that I can make it to the future, without getting through this patch now. Perhaps being slowed down, will allow me to truly appreciate being able to move.
And that is why, I have taken a huge step this week. One that I have been putting off for a long time. I purchased a mobility scooter this week. I always said no, because I didnt want my fitness level to drop and because they are generally associated with old people. But I am fed up of being so overwhelmingly exhausted by doing simple things such as shopping, that I gave in. I used to use a wheelchair, but its not fair to expect someone to push me. This way, I can find my own way around, it gives me back my independence. And that can only be a good thing.
People dont stare as much as I thought they would. Its me, who I find is looking to compare to others. Like when I see an old lady on a stick and I think, that must be harder than it is for me walking. But it is still differnt, her mind, spirit and body are all in the same place, she is at the point where a quiet life is what she wants. I cant compare myself or situation to someone that differnt.
Its still a big step and one that I am not going to jump easily. But for now, I know, that right now, is time for making the most out of what I can do, until a time comes when I can do more. I am working with perhaps 35% of what I should I have, with no real supportive treatments availble. So for now, its all about making the most. And this is perhaps just one way to do it.
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