When your Husband comes out the freezer - its a silly rest day! (13-5-19)

[@LauraBidingCitizen]

Don’t overwhelm yourself Stacey. We will always be here in support of you & John regardless of how many vlogs you upload / when they’re uploaded etc. Remember that yours & John’s Health (both physical & mental / emotional) come first above all else. Don’t go down the slippery slope of overwhelming yourself, stressing yourself out, worrying about vlogs.. it takes the fun out of all of this for you guys. One day at a time - & if anyone understands difficult days / weeks / months it’s us 💕 How funny that someone else mentioned how relaxing your drone videos were! I haven’t slept now for nearly a week & it’s having a really negative effect on my mental & physical health; (mixture of uncontrolled pain, & problems in my home life). It took me a while to get through the drone footage vlogs & yesterday’s vlogs because, although I’m not sleeping, I keep nodding off for 10 minute intervals occasionally. I just found it all very relaxing. Big yes from me for any future relaxing videos! I especially enjoy them as I don’t get out anymore. I can’t afford my own motorised wheelchair, & the only one offered to me was for ‘inside use’ (which my parents home isn’t big enough for), & because it wouldn’t be collapsible, I’d either have to pay out of pocket for taxis or take public transport. I have agoraphobia & a generalised anxiety disorder, so when I do go out it’s with a family member in the car to a place I’m comfortable with. I couldn’t afford taxi fairs & there’s just no way I could use public transport - I’ve tried for as long as I can to use smart crutches (purchased with my own money), but I can no longer walk far. I’m often ready as i feel so trapped. I just miss the simple things like going around Tesco, or to the park in the evening when it’s really quiet to get some fresh air. I’ve tried looking for a second hand chair but.. what if I don’t get on with it? And even the second hand ones aren’t cheap. I’m so fearful I’ll be like this for the rest of my life, trapped indoors. So for now, I live vicariously through you & John & your wonderful escapades! Couldn’t stop laughing at finding Eeyore’s home yesterday & the very angry swan 😂 I hope tomorrow is a better day for you Stacey. I know it’s a learning curve for the carers too, let’s hope something was learnt & next time around it’ll all run smoothly hun. I love how caring & understanding you are with them, you’re a sweetie. John’s like me I’m afraid.. bacon on chicken & Turkey is a must lol! Take care guys, lots of hugs, & many mews & licks from my 2 kitty’s to Misty too!! Xx

[@RawAbilityLife]

Thank you Laura for reminding me it was OK to take a break. Its been a very busy & exciting couple of weeks with lots of changes so my body is slowly getting use to it. But needs time and for me to be more patient. I am glad your enjoying the drone footage. We are hoping to make more of this later on when we have a lot more footage from the drone and the wheelz cam. I am excited to get some lovely footage of things to make relaxing videos for everyone. we have lots ideas will just take time to get footage together. Its exciting. TC, hugs Stacey K xx

[@RawAbilityLife]

Wanted to bring up the mobility issue separate, have you been assessed yet by NHS wheelchair services. You will need to be referred by GP, specialist, OT or physio. Its always worth doing, EVEN if you get turned down for it. Reason why, is you cant get help other ways (other than using mobility) unless you have been turned down by NHS wheelchair services first. If NHS wheelchair services cant help you then there are charitys and grants that we can look into for you. Let me know about the NHS first before I overwhelm you with info. Hugs, Stacey K xx

[@LauraBidingCitizen]

Raw Ability Life Hey Stacey! I’m so sorry for my delayed response. I do hope you don’t think I’m rude (always worried what others think of me when I’m so late in responding or absent for a little while). I actually went into a flare up & just passed out asleep for a few days, clearly my body needed to catch up. I’ve been taking it slow since Saturday. End of month woes (lol we all have them!) so I had to pace myself over Saturday evening & yesterday to batch cook what I had in my freezer & cupboards, so I had some meals by me until payday on Thursday; very proud of myself! Its nice to talk to others who understand that the smallest of achievements can be big to us. I had a mattress topper delivered today to help with any pressure sores, so bedding change & shower tomorrow, which often leaves me in bed for 3-4 days but at least it’ll be done eh! Bracing myself lol. About to catch up on recent vlogs & fingers crossed for updates on your chair / shower chair !!! RE; mobility chair. GP & I have a great relationship (hard to come by these days but he really is lovely in terms of wanting to help if I need it), he referred me to wheelchair services. They came out, assessed me, measured me, & brought me out a self propelling wheelchair. Within minutes I realised it wasn’t going to work. One of my conditions is Ehlers Danilo’s Syndrome, & just from pulling my arms back to the wheels my shoulders were subluxing (partially dislocating). I asked if they did mobility chairs & they said yes but they’d contact my GP to ‘confirm’ I needed one (!). They came out a good few months later & said that my parents house wasn’t big enough for me to have one, & when I said at the moment it’s mostly to use outside as I’m trapped indoors, they told me they don’t give out chairs ‘just to use outside’ (FYI; I will need a chair in the near future as my condition is degenerative, I’ve already gone from being able to walk small distances on crutches or walking aids to not being able to walk much at all - I just want to keep as much of my mobility as I can while I’ve still got it around the house), but that I can use the wheelchair for outside use.. However, I need to move into my own property first so the ‘chair will fit’ around the property..& I’m still on the council waiting list (highest Banding of Band A at the moment, but it’s been a year & a half & nothing so far 😔). My issue is.. they won’t supply a chair that can be folded down into a car for transportation & accessibility. When I asked about this, they repeated that they don’t give out chairs for outside use..& that if I was to get a mobility chair, I can ‘just get taxi’s & public transport’. Sorry, who’s going to fund those taxi’s? I have mental health problems, & anxiety problems / agoraphobia as mentioned, so I often go out with another person (usually my father at present), I can’t take public transport & wouldn’t be able to fund taxi’s either. I’d also like to learn to drive in the future just to get from A>B, but I wouldn’t be able to drive a big vehicle, which I’d need to to be able to carry the chair. I’ve briefly looked online at prices but I would never be able to afford a collapsible mobility chair, & even if I could.. who’s to say it’s the right one for me? I’d be buying the cheapest one just for fundings sake. I did try looking at charity’s & grants but got so overwhelmed I gave up! I feel a bit like I’ve been left to rot & it does make me really sad, however, I know some people are far far worse off than I am / will ever be. I’ve been able to fund all of my mobility equipment myself so far, but it’s getting more & more expensive. Thank you for offering to help, it made me really emotional reading your comment! I’ve already learnt so much from you just watching your videos & listening. You’re an absolute gem Stacey, as is John, & you both don’t half make me laugh! Big hugs to you, off to eat a late dinner & catch up on your lovely vlogs. Sorry for the long winded comment again (& a late response!) much love to you both 💕💐 xx

[@RawAbilityLife]

Hello Laura, Firstly, never ever feel bad for responding late or slowly, we all do, its part of living with disabilitys and CI. We all understand and we all get it so no worrys! Its not being rude, its being human. I am actually so glad to hear you write that you cant use a manual chair with EDS. This may sound so silly but I see so many people on KZbin who encourage it and I literally cry over it as I KNOW the damage it can cause to those with EDS. Its why I made my vlog video about smart drive wheelchairs not being the fashion tool they are made out to be. It can be so overwhelming to look into funding through charitys, but there is help to do that. You can ask Totally Voice/voice Ability (look in discption of any my videos, most has the link) and they can help you with applying to charitys for funding. However I would ask you to also think if you could really cope folding up and lifting a chair into a vicheal. As this could do damage to you as well. Its a lot to think about, and listening and reading your circumstances, as much as it sucks it seams your best bet is to wait it out till you get your new place. maybe an advocate can help you with putting preasure on the cancel about that to, Have you wrote to your local MP for them to help with housing sometimes they can write a letter which pushes things one. More you nag them the better. Also know, you can get special adapted cars that hoist a wheelchair into the boot. that maybe a option to look into. I would suggest to you that you try and go to a mobility show. We hope to go to one soon and when we do I will make sure to look out for things that maybe helpful for you and get some info for you. Sorry this is not going to be an instant fix, but with all of us behind you we will get somewhere. And maybe even have some new ideas for you to look over. TC, Hugs, Stacey K xxx

[@simondavey7787]

I second what Laura said. As your online family we understand if a vlog or two is missed. You physical and mental health is more important. Work through your tasks at a safe pace and know that you have friends far and wide who are rooting for you both. Laura, I pray for an equitable and sustainable solution to your mobility issues. Perhaps there is a way to work towards getting you a mobility aid to help you visit Tesco and get some evening air. Do drop me a message. Stacey and John have my email address and I'm happy for them to pass it on to you. Stacey and John, talking of tasks, I owe you a detailed emsil. I'll ensure you get that later tonight. I'll also do my best to be there for the live stream, if I finish my evening duties in time. Much love all from a very bright Berkshire. This weather certainly suits me!

[@RawAbilityLife]

Thank you for your kind comments. Its also nice to see everyone supporting each other in the comments. John K