There are so many things in life that seem to be sent to test us, small or huge they appear when we least expect them and with no warning, they happen to all of us and we all react differently to them. If tomorrow your Dr told you that you were going to be housebound where would you start to prepare and what could you do to make it easier. I am constantly asked what the process is or how do you prepare for something so huge and constantly I can only give few simple answers. Get to know your illness, I do mean your illness not the general condition. Make your home your nest, it is really important to feel safe and comfortable in your home and then well, I don’t know. Not very helpful of me I know, but I really don’t know, it is a hugely personal thing, I can only tell you what has worked so far for me, but it may be very different for you as we are different people.
The first answer I have mentioned in my blog a few times but I can’t stress how important it is to make that nest the way you need it to be and are happy with. If you are facing possibly the rest of your life inside the space you are living in at this second, as it is, could you be happy there? I know each of you will of at this second probably not even looked round you just made a small nod action and read on. Lets try that question again and this time really look round you at all the surfaces, the soft furnishings the lay out of the space and the visual impact of what you see. Right, if you are facing possibly the rest of your life inside the space you are sat in at this second, as it is, could you be happy there? Remember in a short period of time you won’t be able to work and won’t have the money to change it all later, it is now or never. I suspect that there aren’t quite so many nodding heads this time. The space you live in is your nest and it has to make you happy for a very long time. I was 46 the last time I left my nest, I was luck that I managed to work from home until last September, but not everyone will be able to do that, my nest building was allowed an extension in time to finally sort things out. I am not saying I am 100% happy with my home or that there are no changes I would make at all, I’m a woman we like changing things, but I am content with what I see and I feel safe here, even though I could be here another 40 years plus.
Out of the small things I have done and all the big things as well the one that means the most to me is filling the space I spend most of my time in with beautiful and meaningful items. I have spent more money on crystal and ornaments than I have on adaptations, I know I face being unable to walk in the future so I want to be able to see beauty from any place I might be seated or lying down in. I have made sure there are items that hold special memories around to help keep my brain active and try to minimize the lose of the past. I would say everyone’s nest should show their life and their personality and should anyone try to tell you how your home should be to deal with your condition, personally I tell them to get lost. It is my opinion but I have had constantly over the last 5 years been told that if I fall in the wrong place I could be badly hurt by my crystal, I could be badly hurt by anything if I fall on it, so do I need to sit in the middle of an empty box for ever, just in case?
To survive a degenerative condition get to know your health and your problems not what others tell you about theirs, it is you who is ill and it is you who knows what you can and can’t do. Listen to your body and build a nest, find something that you are able to do and enjoy doing other than watch TV and don’t stop living. That is the biggest one, don’t stop living, sit down and act as though it is over and it will be.
Always good to hear from you – surely its all our right to feel safe in our own homes?
Our friend’s house is constantly being adapted to cope with his ever changing disability since a motorbike accident in 1972 so he can retain his independence.
The house still manages to contain much of his personality (he loves Art Novo and is happy being surrounded by ornaments, mirrors etc from that era) plus as music has always played a big part in his life, he has the best equipment at his fingertips to enable him to hear it clearly in whatever room he is in at the time.
I think I probably didn’t use the best word, to me feeling safe in my home has nothing to do with the type of safety that comes from good locks or being able to move around without danger. In this context it is the type of safe that a child feels in their parents arms. I mean that my home now does that for me it feels like a warm cuddle, a sanctuary that is in sink with me. I have spoken before about accepting adaptations when needed but I will preserve my sanctuary to the last second that I can and when change has to happen, it will be within my comfort zone. It is this safety that allows me to be content with my future happily.
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