I have had a lot of time at home by myself while recovering from my operation. Especially in the beginning, when I could not get into a car to go anywhere, that was a bit of an issue. Luckily, I can now not only get in and out of a car but also drive. I admit its not particularly comfortable, but at least I can get in the car independently and go places.
Last week I was out most days, spending time with friends and my husband. I did find that with being on my feet more, that my knee was a bit swollen again, but I have learned to balance my time on my feet with resting when I need to. Hopefully, I will get into a new routine of building up my strength walking and resting when I need to and recognising that I need to rest and take care of myself.
One day, I had an appointment and did not get virtually any sleep and so I woke my husband and he dropped me off. I was sitting at my computer and could feel myself nodding off. It was undoubtedly the right thing to do, to get him to take me to my appointment and not take risks! The last thing we need right now is for me to have a car accident because I was too fatigued.
I know that stress is not good for my Parkinson’s and there are a few things happening in my life at the moment that are causing me significant stress. I’m not quite sure what to do about it, but sometimes stress can’t be avoided. It is about finding support when I need it and finding a way to reduce stress in some areas that I can control.
I do have a few things to sort out in some areas of my life. It is obvious when dealing with some people that they have little or no interest/knowledge in what happens to a person with Parkinson’s. It is a somewhat ‘hidden’ disability or condition and sometimes I think if we present well in the main, people can forget that we actually have any health challenges. We really need to spread the word that Parkinson’s is not just about tremors! Due to a lack of knowledge and understanding, people’s expectations of us can be unrealistic. Unlike conditions that have an obvious physical effect, Parkinson’s in the early stages can be very subtle. Even so, we do need people to understand and support us. Often it is not until the person with Parkinson’s gives people they engage with some education that they begin to have a glimmer of an idea of our life challenges. While we may be high functioning or give the appearance of being so we still need support and understanding. We really need to spread the word that Parkinson’s is not just about tremors!
My journey with Parkinsons 