Apart from Samaritans is there anyone to speak to?

edited 30 November -1 at 1:00AM in Disability Money Matters
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  • Savvy_SueSavvy_Sue Forumite
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    I honestly don't know if this thought will help at all, but ...

    you talk quite a lot about how you feel weak, you don't feel like doing this, you don't feel like doing that and so on.

    Would it help to concentrate your mind on facts? For example, Ames has worked out what sleeping pattern works for her, but she can operate - at least some of the time - in a sub-optimal pattern. She prefers not to be up and out early, and she feels she will be tired if she has to do that, but the facts are that if she doesn't get up early on this particular day, she will miss an important appointment.

    So, you think "I feel tired and weak, and I don't feel like eating, but it is a fact that if I have a bowl of cereal now, some lunch at midday and an evening meal at 6pm, my digestion will benefit." And, as already suggested, using times when you're at your best to organise what you might eat.

    I have one friend who has had ME for years. They were always very routine-dependent - they'd have an entry in their diary for when they'd do their ironing, for example - but the ME makes it even more important to plan ruthlessly. Nothing can be done on impulse, nothing can be left to chance. Obviously how they feel matters, quite a lot, but the facts have to provide a structure to life: they must work out what to eat, plan meals and order shopping. They must prep meals when they're feeling OK, not wait until they feel exhausted. Any outings must be scheduled with not much activity on the days around them. And so on.
    Still knitting!
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  • missbiggles1missbiggles1
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    Ames wrote: »
    You've obviously identified some of the issues you have, which is a big part of the solution.

    One that I identify with is the sleep problems. Mine can be all over the place, when I'm really stressed I don't get to sleep till gone 6am.

    I haven't found a solution to those days, but on 'normal' days I've managed to figure out what my natural rhythm is.

    I spent a month working it out. I'd go to bed at a 'normal' time, try to sleep, then get up and do something for a bit and try again. Eventually I worked out that I naturally fall asleep between 2am and 4am, and wake up between 11am and 12am, but sometimes need a nap late afternoon or early evening. I need around 10 hour sleep in a 24 hour period. Taking my meds earlier in the evening instead of right before bed helps.

    I'm hoping I can find a way of pulling it round to more 'normal' hours.

    So obviously I have trouble getting up for morning appointments. This morning I had to be at the hospital before 9am for treatment, and didn't get to sleep till after 5am. I've had to nap a few times.

    The one thing that has helped me with waking up is to use a daylight simulating alarm clock. It gently wakes me up before my alarm does. I've slept through it a couple of times, but it's been amazing. It also has a sunset function that helps me relax and get to sleep. I really can't recommend it highly enough. I ignored it a long time after it was suggested to me, because they are expensive. But it's really been worth every penny.

    Another thing is working out your best time of day, and doing things then. Mine's about 9pm to about midnight so that's when I do things like emails, paperwork, bits of housework. If you work out your best time of day maybe you could use it to get the next day's food set up? Lay out breakfast, with plates etc, make a sandwich for lunch, decide on dinner.

    I have to say food is a problem for me too, it just feels wrong to have breakfast at midday even though my body's telling me it's time to break the fast.
    It's the next thing I'm going to work on with my therapist.

    I think taking one problem at a time and figuring out what works for you is probably the way to go.

    (Feel free to ignore my advice, everyone's different)

    Why don't you just call it lunch?
  • AmesAmes Forumite
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    Why don't you just call it lunch?

    Then what would I call the sandwich a few hours later? (And anyway, as a northerner, I'd be calling it dinner ;) )


    Deka space, I'm struggling to understand what problem you want help with. You mention lots of things, but then when people try to help with one you say that's not it and move to another thing. I know it's your condition, but can you try and get it down to one or two things? I can't work out if it's the 'weakness' (do you mean low energy?) or motivation, or needing something to fill your time, or having too much to fill your time and needing to focus on one thing, or something else entirely.
    Unless I say otherwise 'you' means the general you not you specifically.
  • suki1964suki1964 Forumite
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    Well I'm going to be blunt and call it as I see it

    The OP has been posting here for years, and not only under this Username. In the time he's been posting he's gone from college education, to uni to sitting around at home on various benefits

    The op has depression, yet not treated, is autistic, yet managed to survive college and Uni, is on the lower rates for mobility and personal living, which I would assume means he can actually look after himself

    To me the op has just got used to living a lazy ad hoc life. No regime, no structure. He lies in bed all day, stays up to the early hours, has a very unhealthy diet and pigs out before bedtime

    Op, you don't need someone holding your hand. You need to grow up and smell the coffee. Get an alarm clock. Set it for 7am,and get up in the morning, jump straight into the shower, go make a cuppa and a slice of toast or whatever, then get dressed. Do that for a few days and you will soon be sleeping through the night from a reasonable time

    This is what people do everyday, day in, day out, no matter that they really would love to stay in bed hugging the duvet

    Get the sleep sorted, the diet sorted and your energy will come back. With the energy you will find an improvement to your health problems

    No one can help you unless you start to take responsibility yourself. Your doctors and theripists appear to have been trying to tell you this for a while
  • dekaspacedekaspace Forumite
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    suki1964 wrote: »
    Well I'm going to be blunt and call it as I see it

    The OP has been posting here for years, and not only under this Username. In the time he's been posting he's gone from college education, to uni to sitting around at home on various benefits

    The op has depression, yet not treated, is autistic, yet managed to survive college and Uni, is on the lower rates for mobility and personal living, which I would assume means he can actually look after himself

    To me the op has just got used to living a lazy ad hoc life. No regime, no structure. He lies in bed all day, stays up to the early hours, has a very unhealthy diet and pigs out before bedtime

    Op, you don't need someone holding your hand. You need to grow up and smell the coffee. Get an alarm clock. Set it for 7am,and get up in the morning, jump straight into the shower, go make a cuppa and a slice of toast or whatever, then get dressed. Do that for a few days and you will soon be sleeping through the night from a reasonable time

    This is what people do everyday, day in, day out, no matter that they really would love to stay in bed hugging the duvet

    Get the sleep sorted, the diet sorted and your energy will come back. With the energy you will find an improvement to your health problems

    No one can help you unless you start to take responsibility yourself. Your doctors and theripists appear to have been trying to tell you this for a while

    I DIDN'T survive college and university I dropped out almost as quick as I started every time, that isn't being blunt thats not knowing the picture, I survived college BEFORE I had MH problems and even then I was flaky at best.

    The jobs I had short term I was praised as going above and beyond.

    Before I had MH issues I was able to get a solid 8 hours night sleep a day and didn't need more, and body knew when to go to bed.

    The doctors just told me it will all get better with a good diet and sleep pattern which is incorrect whilst other doctors suggested therapy admitting I had problems that needed treated but said too long waiting list

    I have never had therapy and the biggest thing that destroyed me was a family members murder and people gossiping about my family saying things like certain members are on benefits therefore that means they are automatically in gangs/not educated all nasty stuff.

    As for taking care of myself and benefits, I only got them a few years ago after over a decade of issues and likely to have to go to tribunal to get them again, if anything having things like a bus pass and benefits slows down the damage but I have no treatment.

    Also FYI I tried getting up early on more than one occasion that lasted a week or two and each time it lasted less before I slipped back into old ways due to extreme anxiety.

    If I have a good day often I want to go to bed early since I have got things out of my system.

    You are taking things too literal with what I say, I can undereat for a few days, another time overeat and it will be in early evening(around teatime) another time eat a reasonable meal just as I may get up 2pm one day, 10am the next day, 12pm the day after and some days get 8 hours sleep some 10, I have gotten better in the sense I rarely sleep above 10 hours anymore the times I do its often the final stretch as I call it as I could wake up a lot for first 2-4 hours and sttuggle to stay properly asleep then all of a sudden I look at my watch and 3 hours have passed and I think not long now till I get up, then look at watch and its only been 5 minutes since I last checked then all of a sudden another 2 hours have passed so I accidenly slept 2-4 hours more than I thought.

    Even today I was wanting bed by around 10pm but left bedroom pc on doing something and it still wasn't done by 2am so I shut it down, went to bed but didn't sleep till about 3.30, but planned to be up 11.30 (so giving me 8 hours sleep) at 12.30 I was shocked so jumped out of bed

    The whole point is I have no actual pattern to things so its not a case of just saying sleep better and eat better as that doesn't treat the root of the problem rather just at most makes you feel better in some ways.

    I didn't have sleep problems before the murder, I had some problems eating but I rarely overate (it was more starve till evening like now but then eat something small like a ready meal and nothing else) if I had a bad day I got a good nights sleep and felt refreshed and even if often I wanted to stay up past normal time I would fall asleep sitting down before I had a chance to (or even a hour or more before actual bed time)

    Now I just sit and stare and feel miserable.
  • suki1964suki1964 Forumite
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    Do you not get that a good bedtime routine, ie bed before midnight and up at 7 or 8, and a good diet/eating plan, would give you the strength and energy to cope with the other problems you have?

    I've always been very open in that I'm an alcoholic. Before I faced that, I was so much like you at your age now, hiding everything behind the depression. It wasn't until I faced that I needed to stop the drinking that I could then work on the depression. Like you I had a very traumatic trigger, something I felt I really couldn't face. For years I drank to cope with the depression, yet it was drinking that was causing the depression to become worse. Stopping drinking was hard, my insomnia took years to go, even now at times of stress and anxiety I don't sleep. Yet I follow a routine and I do eventually sleep, and the sleeping and routines help me cope with the anxiety

    And yes I eventually had the strength and courage to face my demon, got the help I needed and got through to where I am today. Not perfect , but a functioning member of society

    The only reason you don't have a routine is because you yourself aren't providing yourself with one. It only needs to be simple to start, bedtime, uptime, shower time, eat times. That's it. All you need to get going. Once those become routine, you add another one, like hey it's Monday, I'll go to the shop, Wednesday I'll pop round see my parents , Saturday I'll change the bedding. Simple simple things.

    Today I'm exhausted. I want to sleep, I really feel like I have no energy. But if I sleep today I know I'm in for another rough night tonight so I shall keep occupied till 11pm. Keeping occupied today means it's taken me an hour and half so far to change one bed and Hoover one floor Now once I finish this post I'll finally get the washing in the machine. Hopefully I will get it on the line at some point before I need to start tea :). That's all I can cope with today, one extra job on top of the get up, get clean, get fed

    Nothing changes if nothing changes. The change has to start with you. You are the only one with the power to move forward. Tiny tiny steps, now while you are still young. Unless of course you want to carry on with the life you are leading now. Nothing is going to be handed you on a plate and there is no magic wand
  • undauntedundaunted Forumite
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    It sounds to me like you feel alone & would appreciate some empathy rather more than being told to pull yourself together?


    Has your Dr never referred you for counselling help?


    Have you tried contacting Mind http://www.mind.org.uk/ or any of the self referral / online services ?


    http://www.nhs.uk/conditions/online-mental-health-services/pages/introduction.aspx


    Good luck
  • faerielightfaerielight Forumite
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    Dekaspace..It sounds like everything is overwhelming you at the moment. check with your local mental health team to see if they know of any helplines.. my city has a mental health helpline that is open from 8pm to 8 am.

    Dekaspace.. I am worried that you are leaving yourself vulnerable on here and on other threads, as I can hear the stress and anxiety in your posts.. You are welcome to come and talk on the "Here we can all be heard for a little while" thread in the "Marriage, relationships and families" section of MSE.. Waves and Smiles started a safe protected thread for anyone feeling distressed.. They are all a lovely bunch :) I will leave the same message on the "toilet card " thread.
    Many thanks to all who contribute on MSE :)
  • DomRavioliDomRavioli
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    Dekaspace..It sounds like everything is overwhelming you at the moment. check with your local mental health team to see if they know of any helplines.. my city has a mental health helpline that is open from 8pm to 8 am.

    Dekaspace.. I am worried that you are leaving yourself vulnerable on here and on other threads, as I can hear the stress and anxiety in your posts.. You are welcome to come and talk on the "Here we can all be heard for a little while" thread in the "Marriage, relationships and families" section of MSE.. Waves and Smiles started a safe protected thread for anyone feeling distressed.. They are all a lovely bunch :) I will leave the same message on the "toilet card " thread.

    That thread is absolutely horrible. I ended up leaving it because of some of the dismissive cr4p that gets posted.
  • missbiggles1missbiggles1
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    Ames wrote: »
    Then what would I call the sandwich a few hours later? (And anyway, as a northerner, I'd be calling it dinner ;) )

    Whatever you call it, if you find it difficult to eat breakfast at midday, then just have your midday meal when you get up. A couple of eggs can be either breakfast or lunch/dinner and then you can have your evening meal (tea?) a few hours later as usual.

    Lots of people skip breakfast.
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