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64 replies

Battleax · 21/05/2018 00:13

Smile
OP posts:
Battleax · 23/05/2018 23:09

Three hospital appointments tomorrow, spread throughout the day so hospital transport won't be able to bring me home in between appointments. I can't take my dog with me as there's nowhere for her to be clean, so it's going to be a looooooong tiring day.

Oh wow.

Will they let you have a side room? To wait in.

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FreudianSlurp · 23/05/2018 23:32

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Battleax · 24/05/2018 00:42

Good luck with it. Hopefully the waits for transport won’t be too long and that will help keep it bearable x

OP posts:
gottaslowdown · 24/05/2018 09:45

Life can be such a battle can't it! Sad It can quickly deplete the little energy we have.

Flowers & strength for Akire, Freudian and Battleax and everyone else battling away that I've forgotten, due to the bastard brain fog Grin

I'm shit at keeping up with MN threads by the way. I really do lose the thread...........

Akire · 24/05/2018 12:59

I have good tilting chair too makes such difference. Tranmdol also did nothing for pain just spaced me out. I once took 5h after my hospital appointment to get home! Lots waiting and then for car take my chair. Then old lady we dropping off before us had lots her keys or possibly her handbag and back to hospital and trying drop her off and no one wanted her!

Starving now after healthy sandwich and fruit. Have to be good!!

gottaslowdown · 24/05/2018 14:56

I need a tilting chair I think. Any recommendations?

Yep, Akire important to be healthy. I used to LOVE sandwiches. But always got hungry afterwards. Can't recall whether you are able to try Keto or Blood Sugar Diet, so sorry if this info is useless.

I saw improved health & energy going low carb, high fats. Wouldn't go back. Ever! And I had sandwiches every day. And sugary drinks. Yum. But I was in a constant blood sugar spiral. I honestly couldn't work out why I didn't have diabetes my energy was so cyclical.

Good luck though with whatever works for you. I know you have to rely on helpers lots which makes it trickier.

You've given me some good advice in the past Flowers Bit of a name changer here....

Akire · 24/05/2018 15:04

I get my on NHS though it does depend on what they recommend as only provide bare mim chir to met requirements. So mine isn’t essential just makes huge difference to
How long sit and pain levels.

Keep meaning to look into Blood sugar diet, it was whole meal bread with tiny cheese and salad so wasn’t just jam and white bread but after hour was hunger and stomach actual rumbling. So don’t think it was me being greedy.

Isn’t it like No sugar at all? not sure how would cope! Yes do use bread a lot as get to tired eat then need something as starving. But if would help lose weight I might.

Akire · 24/05/2018 15:05

Aw thanks flowers. No idea who your are:where but nice be remembered for something!

gottaslowdown · 24/05/2018 18:41

When I last 'spoke' with you I would have had no idea who I was either GrinGrinGrin

Cognitive dysfunction is awful! Confused

BeyondPink · 25/05/2018 08:14

I need to look for a tilting chair too!

My chair is on its umm... last legs, it's absolutely battered to hell but has to last me a bit longer. Have a festival coming up that I wouldn't really want to take a new one too anyway (plus I know the one I have can cope with mud), but then I need to save up to pay for my masters so really hoping it won't die quite yet... 😬

FreudianSlurp · 25/05/2018 12:29

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FreudianSlurp · 25/05/2018 12:39

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Akire · 25/05/2018 13:27

That’s great about the rise! How much extra do you pay? Not sure my area does. I know offer a top up voucher if you want better chair but as NHS they get the chairs least half price off shelf than I can so Boucher doesn’t mean I can get even same as them. Plus I think I’d have pay for repairs maintenance etc.

Hope my new one isn’t bigger frame. Waited nearly 9m assemsnt for it to arrive few more weeks to go

FreudianSlurp · 25/05/2018 13:44

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Akire · 25/05/2018 13:57

Right yes that makes sense I’m on DP never thought about that though think stricter now on what can sound it on. I’m just glad that agreed to give me same type model as last one as it broke. But previous engineers I had out repair was basically telling me how I shouldn’t have had it and only needs to be be very basic to key needs. Made me feel dreadful for havng extra features which one of their original team had assessed me for.

I keep you posted when it arrives!!

FreudianSlurp · 25/05/2018 14:13

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Akire · 25/05/2018 14:16

He was also a person who did assessments that was the worrying part! He made it sound if he turned up to do mine again I wouldn’t get what I now have. Just the whole be great full for peanuts thing that’s upsetting. Another way your needs are totally at whim of someone else.

Like when you do benefit forms you can say I need XYX till blue in face. But then if you manage to get SW or OT to Met up with you for half hour (never met before or after) then they basically write what you say down in black and white and suddenly it’s Gospel and people take notice. Even when they are using no more scientific knowledge than you!

FreudianSlurp · 25/05/2018 14:21

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gottaslowdown · 25/05/2018 14:51

Very very interesting about chairs. Going to look into this. Thanks you two. Wish everything didn't drain so much energy out of me when I'm only trying to improve my daily living. Sad Wheelchair referral here I come. Expecting there to be a fight of course. Always is.

Anyone here got a One Cup type thing near your bed? Am also trying to limit carer costs by setting up stuff I need around the bed. Not able to walk very far now and body & heart def prefer horizontal Grin

Be interesting to hear from anyone who has had to build their life around their bed. Even if they're not there now! Did you add any 'aids' to pull yourself up in bed or get out of it. Starting to think that might be necessary. I don't want to use lots of energy doing it or fall.

I might end up on my shell with legs kicking and not be able to right myself again Grin Grin Grin

BeyondPink · 25/05/2018 15:03

I did have a tassimo in my bedside cabinet, but v rarely used it so it got moved to the kitchen. I just get my slave (aka DH) to make me drinks Grin

I have a bed rail, but it's not on the bed atm (the lumpiness of it makes my back worse). It's great for help with getting out of bed, but not so great for sleeping on...

But I do have bottles of water, snacks, sky q and my iPad (and apple home lighting). I don't make it out of bed (except to wee) on maybe two days a week.

gottaslowdown · 25/05/2018 15:31

Ah, great feedback Beyond thank you. So, it's a male slave I really need then? I knew it! Grin

So until I get my male slave (his training is excruciatingly slow) I might get a one cup thing and coolbox near the bed. Anyone else a bit funny with smells though?

I did wonder that about rails Beyond and as I'm in bed 95% of my life right now, it does need to be comfortable. I am a bit of a Princess & the Pea type and that would drive me crazy. Wink

Apple home lighting? Shock That's started off another thread of thinking.

Akire · 25/05/2018 15:53

I had one cup thing for years. Was great because carers could never make a cup coffee just way you like it. To much milk to much coffee. Nothing starts day of bad when have rubbish cup of coffee!

Pods meant that they couldn’t mess it up to much and was daily treat. Though now I’m allergic to diary and been on soya for while they have stopped doing the soya pods for every machine!!

But yes machines are really small and long as you remember to keep topping up water box then you can stay in bed!

Spent years in bed not even getting out for wee so it can be done. Yes to emergency snacks and water under bed as well as meds. Sick bowl whatever!

I have memory foam topper which helps so much with being in bed all day also bed wedges so pillow rest on these. So if pillow moves you don’t smack head against head board or wall.

Wheelchair next to bed so never used bed rail as it was to big for me to reach table with it up or needed to be to fat down bed to be any use.

You do whatever you have to do to get by, for me I still use well nappies in afternoon as means go bed for 4-5 h and not getting up sometimes every half hour for a wee. Makes a huge difference to engery. Didn’t have room for commode as chair on way and bathroom was only few meters further so would just been silly.

BeyondPink · 25/05/2018 16:03

Same here, no room for a commode and the bathroom is only about six steps away anyway.

Got a new bed frame recently which did make it marginally more comfortable, but I'm badly in need of a new mattress. I'll stick it on the (long) list..! Memory foam topper might be a good idea for now though...?

Akire · 25/05/2018 16:18

Mine was about £100 from IKEA and does a really good job. When I sleep in different bed I know about it! Really good chat with others who live the “other” life style. We ant no inspirational Disabled people just dead boring sludge if getting through the day.

In fact anyone you see on Tv being inspirational either had loads and loads of money to climb mountains or whatever or team of family or Carers (again loads of money) to assist them and provide all transport and equipment that makes tracking around world possible.

FreudianSlurp · 25/05/2018 16:48

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