Ive hit a bit of a low point, yes i'm feeling a bit sorry for myself. There a quite a few reasons for this that i can think of but at the minute i just cant put it into words. Reading a lot this morning on other blogs ive come across which sort of brings you down to earth, more so with blogs were the PALS are at a more advanced stage. There is a lot of good and inspiring stories to be read but also a lot of truths about the hard times, which make me feel my probs are mediocre! i need to snap out of it, quickly! Hopefully i will come out of it as quick as ive gone in, that seems to be what happens.
Poker night is off, I spoke to my mate before and hes been very busy with work all week and quite stressed, which has suited me really because i feel very drained, i told him i was going to cancel anyway so all's good.
The problem is as the days gone on ive felt weaker and weaker, no idea why, perhaps my mood isnt great either to be honest.
On days like this you do realise how much this disease takes out of you, i hate it, i wish it would just f off!
Ive been getting a bit paranoid the last few days, under my chin has been twitching quite a bit and got me thinking the worst! i am feared to death of this affecting my speech and ability to eat. I have noticed a few times i get a bit tongue tied, not sure if anyone else has noticed.
Tonight i will be going for a poker night with the lads which should be fun, but polly has told me i have to take my bucket ;-) because she doesnt want me using the stairs at my friends house in case i fall, especially while a few beers will be consumed.
I will be seeing a dietition on the 10th of next month and also had a call from hospice yesterday, i go for assesment on the 4th.
Polly is a pain in bum, i got rid of my desktop pc because it wasnt comfortable sitting at the desk so now we have a laptop, which is great when i can bloody get it off the boss! the worst part is when shes on it (looking for dresses, shoes, bags, etc) for hours on end, she also wants to watch stuff on tv, at the same time! soaps, wedding programs and endless stuff on sky planner, now what do i do??? surely she cant concentrate on both at same time, i know women can multitask but come on. I spend a lot of time checking my emails, forums and website on my phone but its too hard to reply on it with my dodgy hands lol.
I think i need put my foot down!!!
ive removed paypal as an option for donations because they are a pain in arse and also take a slice of the donation! robbing gets.
This may be due to the meds but i'm not sure, i saw a post on a forum about it and thought mmmm thats happening to me. So the problem is sleep, ive never had a problem sleeping, i could fall sleep on a washing line lol but recently ive noticed i do struggle a bit, i get restless in bed at times and if i do get sleep i wake up for a jimmy riddle and the cant get back sleep for ages!
It may be the dex, it may not.
Had the OT call today to see how i'm getting on and what they can do, so after a brief chat i will be getting a second hand rail on stairs and an electric seat for the bath ;-) hopefully they shouldnt take too long to come.
Also been docs this morning and got a new sick note for 2 months, the realisation of not going back to work is kicking in.
I just wanted to say thank you to everyone who has made comments or sent emails, i really do appreciate them, hopefully it raises some awareness and also shows to other sufferers there not alone, who may also relate to some of the things i'm going through. Also it convinces me to carry on with my blog and shows to me that i am doing my bit.
I do want to say a special thank you to someone who sent me the most lovely email and so generously donated to my just giving page for the MNDA, my first donation ;-)
If you do enjoy reading and can pledge please do, no matter how much, every penny counts. I will be auctioning my last bit of fishing parafanalia (spelling) to put in the fund on ebay, a book i got called Still Searching by Terry Hearn which he signed for me at a fishing show (i see him as a legend in the carp world) It may not fetch a lot but its something, i will no doubt find more things to auction in the future.
Ive also added the option to donate by text message.
You can now donate by text, very simple, You text
the code BOON75 followed by amount to
Example: BOON75 £1 to 70070.
Thank you all.
Polly decided to nip tesco before to get some more ingredients for the lemon syllabub, shes addicted! on return she brought some other food items, 2 boxes of beer mmmmm and a bucket, she placed the bucket in a descreet corner of the garden and said "that cuts the stair trecks down by 75%" so i now have a pee bucket easy to get to ;-)
Its been a quiet day in today so i had my morning bath and stayed upstairs for a while to recover as it makes me feel quite weak, after an hour or so i got dressed and ventured down stairs, no problem till second to last step when my knee locked and then gave way, i lost my footing and stumbled then fell into porch door! now no major damage just a bump on shoulder and head, the thing is this was so close to being quite bad, the door has glass in the top half but seperated in the middle, see below.
My shoulder and head hit that middle section! how bloody lucky was that???
Second fall was about an hour ago, again on stairs but this time i was trying to throw toilet upstairs! from second step up! yes my own fault but it seemed better than going to top, anyway the roll didnt make it and i lost balace and fell backwards, this time hurt my bum cheek on wall, my elbow and my wrist, ended up in a heap on floor for the second time today!