24 Hour cafe in Leeds?

Ames

recoverydust wrote: »

All big supermarkets have those mobile ride along machines, mobility vehicles, and I use those. I can't cope with going to those places in the day, but at night I can park in the empty, lit car park. Get in a shopping vehicle, have a mosey about, pick up essentials and bargains,treat myself to something. Then go and sit in my car with my shopping, flask and book with music on my cd player.
It doesn't make the big issues I face go away and I still have to go home to them, but I get a break.
Are you getting support to deal with the big issues!
Xx

I'm not sure whether I'm getting support to deal with the big issues. From a practical side I am - for instance a solicitor's dealing with issues relating to my inheritance. From a health side, I'm still waiting to find out what long term support I'll get. I suspect it wont be much, it hasn't been in the past. I've got a review tomorrow and I've been told to think of things that might help and I've got a few ideas. What would help the most is getting all my medical people in one room to figure out just what my problems are, what causes each one, and getting treatment sorted out. But I don't think that's possible. I want to get something sorted so that instead of the psych team saying 'you need the CFS clinic' and the CFS clinic saying 'you need the psych team', and then me falling between the gaps, I get proper help, wherever it comes from!

Whew, that turned into a bit of a rant!

Alikay wrote: »

I know messing with your body clock won't help long-term, but to get you through this crisis could you tweak your waking/sleeping times so the middle of the night which you find scary is your purposeful awake time?

Maybe go to sleep earlier in the evening then spend the wee small hours dresses with all the lights on and watching TV, cleaning, doing chores etc?

That's what I normally do when I get like this, and if it weren't for going to the hospital every day I'd be doing it in a shot! This halfway method really isn't helping - I'm awake through half the night, a few hours sleep, then up at the hospital afternoon/evening, but too tired to do anything, then home to watch a bit of telly, go to bed, wake up for a few hours...


Thanks again everyone for all the support and for not judging x

recoverydust

I fluctuate between barely able to get out of bed or leave the flat for months, then hating to be in it and needing to be away and occupied.
When I need to be away from the flat because I am scared to be here I sometimes have little regard for my safety.
Whatever you do Ames, make sure you are safe out there in the early hours of the morning.
Apart from clinical help are you getting support to address the problems so that you can resume a less difficult life?
Xx

Ames

Kiss Me Now, hugs x sorry you're having problems too.

The hospital is really helping, but it's only a short term measure, I've been going for just over two weeks and they're now talking about cutting the time I can spend there, the doctor says I need to 'get used to being in my own space', which I really don't think is good for me right now.

Yorkie1

If you feel you're getting passed from pillar to post, PALS (Patient Advice Liaison Service or similar) will probably be able to assist - although I'm not sure whether you're ready for another set of people to deal with / explain to; it would take a bit of energy to start those conversations.

recoverydust

Maybe you could ask for a support worker who can look at both sets of health related issues with you. One who can help you to identify resources in the community that will help your recovery. Ideally one who comes twice a week, once to do indoors stuff and once to do stuff outside. Having a support worker can help bring different health services together.
Have they offered you CBT or graded exercise yet?
Have you asked for a pharmacist to look at whether your mh meds could be exacerbating the cfs?
It's hard to have co existing invisible disabilities especially with benefits and financial issues chucked on top
Hang on In There
Xx

Alikay

Ames wrote: »

Thanks again everyone for all the support and for not judging x

Well, if we've not been through something like it ourselves, we've seen someone close to us suffering or at the very least we're thinking "There but for the grace of God go I"

Hope tonight goes reasonably OK, and if you do head up to McD's, they've got Twix McFlurries as the seasonal special!:)

Take care x

Ames

Thanks. I'll try not to fall through the holes again and involve PALS if it's looking likely.

Savvy_Sue

Some garages sell coffee, and have a little table where you can sit and drink it. Might be worth looking around the larger ones local to you, they don't all let you in through the door after hours IYSWIM.

Ames

recoverydust wrote: »

Maybe you could ask for a support worker who can look at both sets of health related issues with you. One who can help you to identify resources in the community that will help your recovery. I have a mental health support worker who's great, but a lot of services she doesn't know about. It's a private company contracted by social services, and I don't think there's as much communication between departments as there could/should be. Ideally one who comes twice a week, once to do indoors stuff and once to do stuff outside. Having a support worker can help bring different health services together. What kind of support worker would that be? Do you mean a general one? No-one's ever mentioned one to me, so if you can point me in the right direction that'd be great.
Have they offered you CBT or graded exercise yet? I had two sessions of CBT. At the second one he said that he didn't want to work with me because of the CFS and he didn't want to risk making it worse. He referred me to the CFS clinic who said that I needed to see a psychologist for CBT and closed my file. That was the end of that. The only graded exercise that's ever been mentioned was about ten years ago when a specialist told me I had to walk 1km a day for a week, then 2km a day for a week and so on. Which (especially at that time) was totally unrealistic. It's why I've asked for the referral to the hospital gym.
Have you asked for a pharmacist to look at whether your mh meds could be exacerbating the cfs? I didn't even know they could do that. I need to change my psych meds though, it's the main reason for tomorrow's review. I think my meds, one in particular, stopped working a while ago.
It's hard to have co existing invisible disabilities especially with benefits and financial issues chucked on top
Hang on In There
Xx

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whitewing

Ames I expect rdust was talking about themself or making assumptions based on you being at hospital. You could if you want, edit your post so it is still not mentioned.