I have been putting off typing this but sometimes I may say or do things that are bit to the point and I might seem rude or abrupt and it partly because of what I went through I was unwell. I also need to do this for myself so no sympathy please I am lucky to be here and am blessed with the most awsome family imaginable my problems are all sumountable thanks to them and a wonderful team taking care or me.
Also I am hoping to be able to get out and and about more soon when my wheelchair arrives and so will no doubt bump into some of you and you might be a little suprised. Some of you might remember that I was seriously ill with a bowel complaint last year, it has had some life altering consiquences which I am fighting with every ounce of strength I have. Sometime during one of my many crisis when I was ill with the bowel problem something called a benign tremour was kicked off, it sounds like nothing and for a long time we put it down to muscle weakness after spending so much time in bed. I am now under the care of neurologist who diagnosed the problem, the only way I can describe it is like being very drunk or like a rag doll, arms and legs go off in random directions so I fall quite a lot and I can even fall with my wheeled zimmer frame. I have done a lot of work with the physios now working with the neuro ones as it is very imporant to keep working those muscles as it all helps and I have excellent muscle strength according to them. Its a bit wierd my head sort of lolls about if not supported, and I want to go one way and my legs take me another nor buckle under me I can't walk without support. My consultant likened it to ""parkinsons"" but my tremour (what an understatement) is only apparent when unsupported. I also have a bit of memory problem I forget the words and constantly write notes down in my book to remind of who said what, when and where.
I have reluctantly accepted that I will need a motorised wheelchair and my OT and physios are sorting one out with special head and neck support as well as support that will ensure I don't flop forward and ""crush my lungs"". A platform lift is being installed in my house which will enable me to go up and downstairs in the wheelchair as well as some alterations to the outside of my house and some in the kitchen so I can make a cup of tea! I will changing my car for a wheelchair accessable vehicle. All of this is being done with grants my OT has been fabulous getting reports from my various teams and working really hard to get me the help I need. I am still on NG feeding as the blood supply to my bowel is not great it complains quite a lot and I can only cope with tiny amounts of food and then I can't eat milk, egg, meat, gluten or wheat. I am a huge fan of roasted vegetables though I have spent months beating myself up for not getting better, at a recent gasto appointment I apologised for showing no improvement and he told me he never expected me to get off TPN let alone be managing some food and that I am far far too hard on myself.
I am accepting the alterations I need to regain some independence as my stubborness has affected my children and never wanted to do that. My 2nd son Nicko did not go uni so he could help look after me and that breaks my heart. Josh has recently been referd to the young carers club here, he has his own health issues and is only the the size of an 11 year old despite being 15, so he can't help support me when I walk, but he pops into my room every couple of hours to offer to make me tea and he tells me off if he sees me struggling to do things alone ""you only have to ask me mum"" he says.
I have not been alone in my house for more than 10 minutes since December. My OT is rushing everything through and I am delighted to say that Nicko has accepted a place at uni for next year. It is not all doom and gloom my children and I have laughed about my falls sometimes, once they are sure I am unhurt seeing me flapping about like a flounder the deck causes much amusment and I can easily get stranded just leaning across the bed to reaching for something. My family have been amazing, my bond with my sister who sat by bedside when the Dr's did not expect me to last the hour and literally dragged me back from the brink has been re-inforced. My poor mother was recalled to my bedside 3 or 4 times. My children saw me in states I never want to repeat but we are stronger family for it and I treasure every moment with my children and I am so proud of how they coped, I don't think I could have been as strong.
So if you bump into a slightly (ok totally) mad woman with strippy socks a la pippi longstocking bombing around in a wheelchair with tupes up her nose you will know it is me!
Thank you for reading (assuming you got this far) and for letting me share this with you, it is good to talk!
ps kitchen have not sent up my rice with veg just 2 bottles of NG feed Argggggggggggggggggggggg