August 2005
This is my last tubeless month,the next time I write I will have my feeding tube fitted. I think that I've timed it about right,eating is getting more difficult and I'm losing interest in food. My breathing has got slightly worse,so I couldn't leave it much longer,it is necessary for my survival! I now have a new bed,it's a hospital type bed which is electrically adjustable and goes allsorts of ways?? It's very comfortable and I no longer get pain in my hips when laying down.
Time goes by so quickly,days seem to run into each other.I'm sure they've taken 2 days out of each week and not told me,lol. That's probably why I seem to have declined so rapidly over recent months,I feel weaker all over. Hopefully,when I've had the feeding tube fitted,the feed will pick me back up a little.
Mentally I still feel quite well,I just get tired more easily but I still look forward to each day and have no intention of giving up,DEFINITELY NOT!! There are still many battles to win before THIS war is over!
September is going to be a very busy month for us,having environmental controls fitted,then I go into hospital one night for a sleep study to check my breathing while I'm asleep and then I go in for my feeding tube to be fitted,PHEW! And no doubt a few other things will occur during the course of the month,see,too busy to be ill!
Oh,by the way,Sharon is now 40! My turn in October,wonder if life really does begin at 40?
September 2005
This month started sadly with the passing of Chris Mann,a pALS from Canada,rest in peace Chris,your suffering is now over.
I've now had the environmental controls fitted,so I'm making and receiving phone calls(not that anyone can tell what I'm saying,lol),controlling the tv,video,dvd and hi-fi. Still not got the speech computer hooked up to it yet but suppose I can't have everything(why?).
I had my sleep study done on a Sunday night at Kings Mill Hospital,it was a waste of time really as I couldn't sleep! The bed was very uncomfortable for me and the staff weren't exactly helpful. It was scarey actually,being shut in a dark room on my own with no means of summoning help,there was a cctv camera on me but I didn't know if anyone was watching it. Anyway not heard any results yet so will have to wait and see.
19th September went into Queens Medical Centre,Nottingham to have my RIG tube fitted. I was to have it done the following morning at 11am,so I spent a restless night on the ward,I was really nervous by the morning (I have a deep-seated fear of all things medical,almost a phobia). Eventually 11 o'clock came,only to be told they'd cancelled it until the next morning because the previous procedure had been difficult and they'd run out of time. I was a little upset but also relieved that I'd not had it done,even though I'd have to go through it all again tomorrow. I had a better sleep that night so woke more refreshed,although still very nervous!
At last I was on my way down and into the x-ray room where the procedure was to be done under local anaesthetic. I'd like to describe the procedure in detail but I can't,I had my eyes shut and I'd also like to tell you what a pleasant experience it was,but I'd be lying! Still,when needs must.
I'm not really the ideal case though,as I had a major problem,my stomach is in a very awkward position right up under my ribs. I was lucky that they were able to do it,as if not it would've meant an operation.
The procedure lasted about an hour and was back up on the ward for about 2pm. That night I just had water through the tube and went home the next day. I would like to thank all the staff who dealt with me on ward D11 for making my stay as pleasant as possible and for their caring and understanding attitude.
Back home I had my first real feed over night,but the next morning we had another slight problem. We couldn't get the giving set off of my tube! Anyway,to cut a long story short,we ended up in Accident & Emergency to have it detached. So a good week was had by all,lol!
Things have settled down again now,I still eat one meal a day and drink normally but I now have a litre of feed pumped through my tube during the night.
If anyone would like more details of the RIG procedure or questions about anything really,send me an email.
Always glad to hear from you.
October 2005
Well I'm now 40! Woohoo! Made it!
It has been a lot quieter this month,thank God. I spent about 3 days in bed feeling unwell and had an infection in my feeding tube site but that's about it. Well that was it until someone smashed into the back of Sharon's car,while it was parked and wrote it off! Luckily Sharon wasn't in it at the time but she had all the hassle of sorting it out.
I was thinking(yes,it hurt) the other day about how complicated life with MND is now,even simple things we used to take for granted.For example,if I need to go to the toilet we have to go through to the bedroom, hoisted from my wheelchair onto the bed to take trousers down,hoisted from bed onto shower/commode chair, then wheeled into the bathroom,over the toilet to do......well........whatever it was that I wanted to do!
When I've finished we have to go through it all again in reverse this time. The whole process can take over an hour,depending how long I'm on the can for. And so it goes on,day after day,getting up,going to bed,feeding, toileting,showering and I'm just sat there,powerless to help at all. This is on top of all the 'normal' daily chores, I don't know how Sharon does it,thank God(well,social services and ilf) that we have our carers.
I know this sounds quite depressing,and sometimes we do get down,but on the whole we take it in our stride and laugh as much as we can. This is just our lives now and you just have to get on with it the best you can.
I don't feel that I've got any worse recently,except maybe my speech,so we continue to live in hope.
Create thoughts and words that give only happiness. The world is filled with worry and sorrow.
Do something different!
Copyright © 2004 - 2005 Rob Marshall