Today the clinicians trudged in and out of my home . I can’t believe that so many professionals have to be involved in enteral feeding ( feeding tube) . The speech therapist offers wallpaper paste to put into my drinks…. No thanks !!! The nutrition nurse organises the syringes, the dietician provides the food and weighs me and the district nurse looks after the feeding site and finally the radiologist replaces the tube. So many professional for one intervention!!
The door to feeding from my tube has closed shut again but while it has shut I have lost about a stone and the professionals were not happy at all !!! I kept in mind my approach of not feeling ‘ill will’ to the professionals. I always get down when I meet the professionals . I guess when they talk to me about MND and the effects it always makes it more real and that have a knack of getting me to look around the corner which for me is a ‘blind corner’ until they come. I don’t envy them having me for a patient !!!
So today I have to open the door but open it a lot wider as I have to get a lot of food in my body which will take up considerable time in the day. When they all left the rain poured from my heart but a couple of friends Ann and then Jane entered and distracted me and we went to buy plants. The rain also poured outside as we we in silence towards Lymm . I think it’s hard for people when we are in the car as no conversation is not possible , but I guess they get an insight of what it’s like to be with someone and wanting to talk but can’t.
We bought an array of beautiful scented plants , I have never loved gardening so much as now . I imagine the garden in two or three years when it’s mature and wonder who will get the pleasure from my productive work today. That is a thought I have often . What can I do today to make a difference in the future whether it’s getting rid of rubbish , writing my books for the boys , painting a picture for my sister , sorting my bills out …. There is so much to do.
My sister talks of ‘footprints’, is that one reason for our existence to leave a legacy for the future generations . When I consider the people I know we leave so many footprints for others but we don’t reflect on that much . We should celebrate our contributions to the world more than we do, not just as eulogies at our funerals. So many people in these days have told me how i have influenced them since I have been ill and that has been so very very important to me and I have cherished those comments … Thank you from my heart !
So I have decided that I shall also make a point to return that sentiment to others and maybe you can also tell your friends and family how they have contributed to the world NOW and so they can get the pleasure and confidence in themselves, make a list for yourselves also. It not something you reflect upon in mid life in the midst of your everyday thoughts.
Living with MND 
Sounds like you have had a hard day little Sis, by the sounds of it even ;littler Sis! I am horrified that you have lost so much weight it is not as though you have much to lose in the first place!.
i know you find the thought of feeding through your tube hard but just look on it as a means to achieving even more than you have already. So many people have and are benefiting from your achievements, writing this blog each day cannot be easy, especially when you are sad or have had a hard day, However, hang on to the fact that sharing the bad as well as the good, is encouraging to all your readers, something good can come out of something bad even if it is only making someone else think how lucky they are. You should be so proud of yourself little one and do try also to do something to be kind to yourself each day . xxxx
1.Ok, so you’re organised with wallpaper paste.
2. Your blog is a lovely thing in many ways. It certainly helps me, makes me think that it’s something I will start to do more regularly later on. I think it helps also to ‘offload’ everything by writing it down, espescially for someone unable to communicate verbally. I have to say I’m impressed that your ipad survives so well, I would worry that my poor old ipad might get the brunt of my frustration when I can’t shout and scream with frustration!!
3. It is a lovely thing for those who care about you to have in the future, when you aren’t there in person because it is apart of you that will not be erased.
4. I would certainly not want to be a health care professional looking after me either, although mine are fantastic. Do you not have Community Matrons in Manchester? We do in North Notts and mine is a) fab and b) great at co ordinating everyone else.
5. Now just try and use the ‘orrible tube, put some weight on and they’ll go away and leave you alone for a bit, so you can do more useful things with your time. xx
How fabulous your Buddha looks now surrounded by beautiful plants and flowers !!! I wanted to say re yesterday’s blog that my mother unbeknown to us had left a list of instructions for her funeral. It was so nice to be able to make everything exactly as she had asked and my sister and I who did everything re the funeral between us were so grateful to have this list. We said many times to each other that we must make a list for ourselves because it makes everything so much easier for those left .. Of course neither of us have done it yet but now your blog is a reminder again !! Use the ‘orrible’ tube and keep strong. You have lots more to do. With love xx
Hi linzi,
Sorry u are having to deal with this totally unatural way of feeding…not nice, but i”m sure that u’ll treat it like any other skill to learn….i remember first doing my insulin injections it used to scare the s**t out of me…just gotta be done….and now its just part of the day.
I have to say your blog is addictive and i look forwards to reading it every day…the blog will be one of the footprints you leave on me…because its like i have experienced it at the time its written….how u come up with inspiration every day is beyond me. It ll be alive for years and years to come. My dad painted and have loads of his paintings because I have copied them and made them into a photobook and calenders….but i feel close to him when i look at them…because they were his creation…and i can remember him painting some of them.
Take care and be kind to yourself….and thanks for your daily insights.
Julie