Sorry I’ve not updated in ages, not been online as much as I’ve been struggling lately but felt much healthier yesterday, although much less so today. Today I feel like a pile of poo, all bloated, swollen, extremely dehydrated & dizzy but have been drinking normally so I’ve had that song in my head all day, the one that goes ‘there may be trouble ahead….’. I’m keeping my Imodium to hand, just in case and sorry if TMI! 
I’ve got good news- I’ve finally got a proper carer! yay! So (among other things) I finally I get to shower more & so feel sooo much cleaner & alive..... Now I get help I manage to put a little more energy into eating (and actually digesting) my food so I’m much healthier than I was 3 months ago! I’ve also been put on vitamin and mineral capsules called ‘Forceval’. They’re massive but seem to be doing the trick so I can’t complain! Took a while to figure out how to swallow them without chocking myself and getting them stuck in the back of my throat requiring me to stick in my finger and dislodge it…. dropping my chin to my chest as I swallow seems to do the trick for now! But they’ve definitely made me feel healthier so i’m gonna keep taking them like a good girl. look- they're massive compared to my normal sized capsule of tramadol- 
EDS certainly makes my life interesting. One minute you’re getting ready to go shopping & the next you’re randomly laying on the floor with a dislocated left shoulder & left acromioclavicular joint. Great. Only had a window of 5 minutes so did the quickest relocation ever on both & again (& again as the sodding things kept popping right back out), said a few choice colourful words & finally attacked myself with zinc oxide tape…… & I made it on time to mums to go shopping! Woo! Go me! I’m getting good at this relocation & taping malarkey! Good thing too do it on a daily basis without the use of an A&E medic to help me. apparently dislocations are not actual emergenices for us bendies and so we shouldn’t go to A&E. I’m tired begging for treatment so I fix myself. like most bendy people do! & yes, i know i'm bitter about it. ;^P
Been having lots of fun lately with family, friends & crafts! Gradually getting better at knitting! Woo! Learned how to do stockinette stitch & making a little bag to practice it to reinforce the stitch in my brain so I don’t forget it if I don’t use it for a while. once I’ve finished I think I’ll go back to crochetting animals though as i like it better than knitting. Went shopping with future sister in law & found PERFECT bridesmaid dresses (I’m head bridesmaid! Woo!) & we had great fun in the evening looking at stupid videos on youtube (look up airbumming, its hilarious & apparently essential learning for anyone in the forces….). Shame about the totally crap shopmobility at Bluewater that had 2 available scooters but wouldn’t let me hire one for an hour as they were needed in 4 hours. boo, hiss etc. A week or 2 before that we (me and future sister in law) had fun making fruit salad & generally chilling out in my flat - my brother and their 3year old son came too so it was great. We ate more fruit than we put in the bowl and little Dylan couldn’t believe his luck that he got to eat so much watermelon! Been singing lots too so that has been fantastic as i love it. Still get incredibly dizzy when I sing but as long as I sit down & don’t get up between songs I don’t actually faint so I’m a happy bunny! I’ve been singing at mass more & have sung at special events lately- a wedding & a mass for the kids making their 1st holy communion. Now only have to be able to be well enough to actually make it to practice on a Tuesday night & I’ll be laughing!
Ooh just noticed that my cat, Tiger has been acting rather odd all day - she’s been hovering at my side all day, apart from the short time I was in the shower with the carer. She even sat on my chest this morning so I couldn’t get up (I wasn’t arguing, felt so nauseous and dizzy that I had no intention of moving!). She’s still sat here about an inch from my leg & is making me think I need to check my heartrate & b.p. She only ever does this when I’m sick ....... She usually comes and says hi, eats her dinner, pops out & then goes straight back to bed where she stays. But been my shadow all day! Kinda worried. Hopefully she’s just in a cuddly mood!........ Or maybe not- Heart has started palpitating like it’s on a mission to escape from my body and I don’t have the energy to fight it so methinks it’s bedtime!
I’ve got good news- I’ve finally got a proper carer! yay! So (among other things) I finally I get to shower more & so feel sooo much cleaner & alive..... Now I get help I manage to put a little more energy into eating (and actually digesting) my food so I’m much healthier than I was 3 months ago! I’ve also been put on vitamin and mineral capsules called ‘Forceval’. They’re massive but seem to be doing the trick so I can’t complain! Took a while to figure out how to swallow them without chocking myself and getting them stuck in the back of my throat requiring me to stick in my finger and dislodge it…. dropping my chin to my chest as I swallow seems to do the trick for now! But they’ve definitely made me feel healthier so i’m gonna keep taking them like a good girl. look- they're massive compared to my normal sized capsule of tramadol- 
EDS certainly makes my life interesting. One minute you’re getting ready to go shopping & the next you’re randomly laying on the floor with a dislocated left shoulder & left acromioclavicular joint. Great. Only had a window of 5 minutes so did the quickest relocation ever on both & again (& again as the sodding things kept popping right back out), said a few choice colourful words & finally attacked myself with zinc oxide tape…… & I made it on time to mums to go shopping! Woo! Go me! I’m getting good at this relocation & taping malarkey! Good thing too do it on a daily basis without the use of an A&E medic to help me. apparently dislocations are not actual emergenices for us bendies and so we shouldn’t go to A&E. I’m tired begging for treatment so I fix myself. like most bendy people do! & yes, i know i'm bitter about it. ;^P Still waiting for my wheelchair. Darn it! I was told processing time was 4-8 weeks. its been 8 now so called the unit & they’re still waiting for it to sent back to them ready for me to pick it up. The specialist told me it takes the manufacturer only a fortnight to actually make the chair so I expect my chair paperwork has been climbing though NHS red tape & jumping through hoops for 6 weeks! Hoping it’ll be soon! Still, even with the delay it’s still quicker than most units- my first appointment was only in January!
Been having lots of fun lately with family, friends & crafts! Gradually getting better at knitting! Woo! Learned how to do stockinette stitch & making a little bag to practice it to reinforce the stitch in my brain so I don’t forget it if I don’t use it for a while. once I’ve finished I think I’ll go back to crochetting animals though as i like it better than knitting. Went shopping with future sister in law & found PERFECT bridesmaid dresses (I’m head bridesmaid! Woo!) & we had great fun in the evening looking at stupid videos on youtube (look up airbumming, its hilarious & apparently essential learning for anyone in the forces….). Shame about the totally crap shopmobility at Bluewater that had 2 available scooters but wouldn’t let me hire one for an hour as they were needed in 4 hours. boo, hiss etc. A week or 2 before that we (me and future sister in law) had fun making fruit salad & generally chilling out in my flat - my brother and their 3year old son came too so it was great. We ate more fruit than we put in the bowl and little Dylan couldn’t believe his luck that he got to eat so much watermelon! Been singing lots too so that has been fantastic as i love it. Still get incredibly dizzy when I sing but as long as I sit down & don’t get up between songs I don’t actually faint so I’m a happy bunny! I’ve been singing at mass more & have sung at special events lately- a wedding & a mass for the kids making their 1st holy communion. Now only have to be able to be well enough to actually make it to practice on a Tuesday night & I’ll be laughing! |
| My poor, long suffering gym ball got attacked by fruit. Future facebook profile pic methinks! |
 |
| It's like she's superglued to me today! |
poor tiger puts up with a lot, i'm surprised she still likes me:
Sorry for the length- must update more often! the next one will be much shorter, i promise!
Sorry for the length- must update more often! the next one will be much shorter, i promise!
Night all!
