Daydream fund challenge part 4

alfie_1

LIR... iv said it before so i will say it again ! you put a lot of people to shame, you never really complain, you dont feel sorry for yourself and you dont blame someone else for your situation. you have a wonderfull OH and are the kindest people i know. i see great dignity...;) :A

Better_Days

lostinrates wrote: »

I feel the health system struggles a lot with rare chronic conditions with no quick fix.

However I have after years avoiding it, applied for a blue badge as I just don't get out enough ATM, and I've finally accepted if I have it and feel fine I don't need to use it, but if I do need to use it I can. It will mean I can do things like book appointments at a dentist.....which I haven't done for fear of being too crook on the the day

I agree about the health system, it's mainly excellent for acute care, or for care for those with chronic illnesses which are well recognised and/or well understood. But for the poorly recognised/understood conditions provision is patchy at best, and positively harmful at worst. And where chronic conditions overlap with social care its a mess.

Trying to work with the NHS to improve things is like trying to herd cats.

GL with your BB application.

lostinrates

ukmaggie45 wrote: »

So glad you have finally got Blue Badge LiR. :j It really can make such a difference.
.

Well, haven't actually got it yet.see, I thought if I filled it in and stuff they could tell me if I would get it or not then I could sort out a picture.

Obviously, sorting out a picture is more difficult if you don't have a lot of resource of energy etc.

But no, I sent application in in early December and called last week and they said they don't process them till they have everything. So I have to proceed it when I next feel ok to get a photo ( something which frankly I find totally demoralising). When I have strength it tends to be used on chicken houses and stuff.


I have a lot of couch grass in the dog wood still to weed out. About hmm.....eight? Ten metres? Of fairly heavy going weeding, and then everything needs another light going over again.

I'd like some dry weather for a serious clearing spray in some places too.

Better_Days

Lovely video of bull terriers getting comfy
https://www.facebook.com/video.php?v=486759854757323

choille

OH just applied for a blue badge. His condition is getting very worrying & it he's not getting any help with pain apart from being perscribed drugs that caused massive allergic reactions - AE is 70 miles away but we had to get there on 2 occasions.

We are luckyish in that we have someone we know now with the same condition. OH's wasn't picked up for a couple of years which did damage.
There is now a special centre in Edinburgh because it seems to be a Scottish gene deficiency in the main so he should get a referral, but doesn't look like it.
Only a few years ago it wouldn't be recognised - people would die because of it - we now believe that's what killed his parents.

My chronic disease is more common & the expertise is in Inverness coz it's rocketing condition now in the Highlands....so that is handy. I have a brilliant consultant & manage mine with drugs & diet.

lostinrates

choille wrote: »

OH just applied for a blue badge. His condition is getting very worrying & it he's not getting any help with pain apart from being perscribed drugs that caused massive allergic reactions - AE is 70 miles away but we had to get there on 2 occasions.

We are luckyish in that we have someone we know now with the same condition. OH's wasn't picked up for a couple of years which did damage.
There is now a special centre in Edinburgh because it seems to be a Scottish gene deficiency in the main so he should get a referral, but doesn't look like it.
Only a few years ago it wouldn't be recognised - people would die because of it - we now believe that's what killed his parents.

My chronic disease is more common & the expertise is in Inverness coz it's rocketing condition now in the Highlands....so that is handy. I have a brilliant consultant & manage mine with drugs & diet.

Can you get a referral to a pain clinic for him?

I'm quite good with pain tbh. I'm in a low pain phase ATM any way, but I always think if it hurts at least its still there. :rotfl:. I used to find tens did not work but am finding it does work now in some areas, particularly my facial pains are reduced somewhat.

What a fascinating thing, a highland gene. Now that its recognised is there a treatment for it? Or just care? When he has his next appointment you could check the notice board to see if any one is doing research on it, or have a google. Being in a research study is often a good way to find out what newest thoughts are.

choille

The pain clinic has been hopeless for OH. It's not a Highland gene thing, but a Scottish/celtic gene thing. They have a data bank in Liverpool! I think. Coz it's genetic his kids & their kids have had to be tested. But it takes two parents with the defective gene to create an off-spring with the defective gene, but his full brother doesn't have it.

The DNA stuff is coming on leaps & bounds.

My condition - the gut thing is rampant in the Highlands & there is a theory that it is caused by a virus - which is quite interesting too - well for me it is.

If you have a recognised diagnoses then if you can track others down by ie a forum, or society then that can be a empowering & useful thing, but it can also be a bit depressing too as we are who we are & not our illnesses - IYSWIM

lostinrates

No, I get that choille, entirely. I hVe spent a little time on forums for the secondary conditions I have to gather information Nd I'm convinced people are making them selves iller by 'sitting' in it a lot. They sound so sad and I feel so sorry for them, but not mainly because of the health condition. . Its horrid having stuff wrong with us, really horrid. But we are just another star in the sky, or pebble on the beach. The world is so much bigger. So MUCH bigger. Our homes and what goes on in our families is so much bigger.

Last year I got the pets all sorted out with the vet on a scheme so that when I'm gone fir gets texts and drugs sorted for him, and twice a year check ups, so they'll be fine. I'm aware soft furnishings matter more to me than him, and another woman would want it all different anyway, but I'd like them done for me, so keen to move ahead with some of them before next winter. At least the study and kitchen. I'd like to know I'd left it here so that a future mrs rates wasn't terrified by the place, even though she'd make it hers . When one says that people get really histrionic, but the prospect really, genuinely doesn't upset me, makes me quite excited for fir. I have already told him I'll come back and kick his bum if he isn't out dating six months after I'm disposed of. . I was only meant to last a few years and I just won't cark it so, chances are I am indestructible anyway.

choille

Well, I don't know what to say LIR, other than you're organised which is great.

I have said to OH that if I go before him he'd best get someone in quick as he's hopeless on his own, but I doubt they'd come & live in the the van - what sort of woman would :rotfl:?

Better_Days

:eek::eek::eek:
Where is everyone today????

No frost this morning and even a little sunshine.

Veg box chap rang and woke me up while I was resting as he couldn't find our house. I'm at a T junction with 3 trees opposite he said. There's a sign saying 'The Street' and 'Orchard House'.

Didn't have a clue where he was. Told him to go back to the nearest village on the signpost and try again.:o:o:o

He must have found us in the end as when I got up there was a box of fruit and veg on the step including a pineapple yum yum.