Not sure what to do

The best way to describe how my life feels at the moment is overwhelming.  

My health and ability to cope with things has been deteriorating slowly over time and this is nothing unusual; I go through these phases and have done throughout my life.

What is different now is that everything seems so much more intense and the standard I have to work to are much higher.  I can't get away with having a bad day or even bad month as nothing slows or stops to accommodate it.  I am now a mature woman and as such, people expect me to tolerate and cope with the toils of life, but in fact I still struggle as I did back in my teens, just I hide it better.

As described in other posts, I have been back to my GP as a result of sensory issues and having shutdowns at work and I was told I would be referred to a specialist and would hear within 7 days etc.  That was over a month ago...

My referral has been rejected twice already due to the facilities it has been referred to not being capable of dealing with 'my type of case'.  Meanwhile it has now been referred to somewhere else and I am told to give it more time and be patient.  That's all well and great when you are in a fit state to deal with everything.  Why is it medical experts don't seem to realise time is not on your side in these situations as you are sliding faster down a slippery slope that becomes much harder to climb back up again.  Also, instead of being referred for sensory issues, I have been referred for a mental health assessment.  I am confused and flabbergasted by the whole thing.

As a result I am left feeling like I am trying to drastically hold onto sand that is slowly slipping through my fingers.

There are other personal factors that have probably contributed to how I am feeling and reacting as well, but the main issue is that I am now just functioning as in getting up and going to work and that has been hit and miss on occasions.  My routines that I so strongly rely on to make sure I eat and eat healthy as well as keep my house clean and tidy, I can no longer achieve or even comprehend, which is only heightening my stress levels - I must follow these routines in order to feel calm and in control.  My self-care has also lapsed and everything seems a massive chore.  Even my special interests just seem too much to even think about or get actively involved in.  To make matters worse, my partner is also going through a bad time, so he has his own battles to fight without having to deal with mine.

I am aware I am having an intense period of emotions and that they are bad, but I cannot differentiate what they are or even as to why I am feeling them or what lead me to this point.  Not seeing the wood for the trees could be a possible issue.

Either way, I now don't know what to do.  

I have no one to turn to and even if I did, I don't know what I would say or do as I cannot express myself verbally in these situations.

To summarise, I am tired and I know it is only a matter of time before I roll over and give in because I can't battle on any more.  This is why I get so frustrated that everything surrounding mental health is based on time and the infinite amount of it apparently.

I am normally a good problem solver, but I can't see a way out of this one and that is what troubles me the most.

Parents
  • I had to get my head down last night and just try and rest, which has helped, but I am left with that weighing feeling over me this morning.  The one where problems don't go away and sit with you.

    As you have all said we have all experienced these problems at stages in our lives, which is why I find it so frustrating that there is no system in place to support us in times of need to stop us getting to crisis level.

    I don't receive any benefits and never hand done.  I was section at 19 where I had tried to do the right thing a year previous and got a mortgage on a house (was manipulated into this situation and strung along - that's another story!).  Even when I was in hospital after a suicide attempt and was being held against my will, there was no help or support to help me at least contribute towards the mortgage and stop my house being repossessed.

    All I kept being told was:

    1 - You own your own home so there is no support to help pay for that

    2 - You were fired from your last job as a result of being unfit for work and you are not seeking work (I was sectioned) so can't claim job seekers

    3 - You are not disabled so cannot claim disability allowance

    4 - Can your parents pay the bills (yes seriously!)

    5 - Wait until you are in X amount of debt and then claim bankruptcy or sell your home

    All of the above did not help my situation and would have just caused further problems.

    As I have said in previous posts, we are all people who want to thrive in life and do our best, so why is it there are so many systems that are rigged against us or help is always too late to offer support when when we need it most?  I am ranting and going off topic now, so back to the point.

    I'm not sure about current benefits as I have been told I am very high functioning - so can cook, clean, go to work etc.  What those who would be assessing me would not see is the level or procedures and regimes in place that I must follow to achieve these.  If any of them go out of kilter, then I am a mess and struggle.  So on the surface it appears I am doing just fine, but most people don't see the effort and forward planning involved in just getting by.   

    On my health in general, I used to exercise regularly, but haven't for months now and I am aware I have become very unfit.  I become tired very easily from just walking and feel exhausted all the time.  Again this comes back down to my procedures not being permitted or I cannot see them through to ensure I plan and cook my meals in a certain way to ensure I eat healthy.  Being so exhausted has resulted in me doing no exercise, but I am trying to go for walks when I can and want to get back into cycling.

    I am taking vitamins and should probably invest more in my personal care such as soaks in the bath etc.  This is something I will have to look into.

    Sometimes I wish I could literally stop the world and get off for a bit so I can just get my head together and have a rest from it all.

  • Yeah, that’s exactly how I feel ~ I would like the world to literally stop so I can get my head together, have a proper rest from it all and be able to start formulating plans that are going to work for me. 

    Your comment to Robert, regarding, letting the job centre know that the help isn’t working, is spot on. I had my meeting with my work coach last Friday, this was changed from the usual Thursday, so I was dealing with that, and although she’s been really supportive, on my last visit to her, I said something she didn’t ‘get’, so I was wondering if she’s actually helping me or I’m just kind of going along with it because I was so happy that I seemed to be getting support?!?!? 

    So when I went on Friday, I decided to tell her how it is. She just looked at me for a second, and said, you need help! She said she wants me to do only one thing this week, towards my ‘job search’, and that was to call my psychiatrist and find out when my next appointment is. She said if he can’t give me the support I need, then we need to start looking for it, because, she said, I need support with day to day living before we can think about looking for work. I said I could maybe do a part time driving job, and she just looked at me, and said, but that’s still dealing with people. She said I’ve remembeted everything you’ve told me and I know you’re the type of person to keep pushing forward, but you have to take this in baby steps for it to work. 

    So in conclusion, I was totally honest with her about how life is for me, and she responded by saying she will do everything she can to support me to get the support I need. And this morning, although I haven’t got out of bed yet, I’ve made a plan for the day (tidy my bedroom) which is going to benefit me in many ways. It’s a bit weird accepting baby steps, but slowly but surely, I think I’m getting the support I need. I know where I want to be, I just need help getting there, and once I’m there, I won’t need their benefits etc, so in the long run, it’s better that I get all the help I can now, so I am  able to provide for myself and live a life of my choosing, which I’ll be able to sustain. 

    I’m realising that we are going to have to be the ones to show them what support we need. I realised that although I was being honest and open with these people, they weren’t seeing all the processes in my mind that go on in order for me to function, like what you were talking about Starbuck, and when I did open up about it, the work coach was amazed. She had worked with autistic adults in a large residential place; however, many of the people there are non verbal and the ones that are verbal, are not able to articulate how they’re feeling etc, very easily, so although she is skilled in working with them, she had no idea of what’s actually going on in our heads etc and that just because we appear ‘high functioning’ it doesn’t mean that we don’t have challenges that we face on a daily basis, which made me realise, most people don’t know what support we need, so I’m prepared to work with them, so long as they are prepared to give me the help I need which is going to help me instead of it simply helping me to ‘fit in’ with their idea of what’s right etc. 

    The exhaustion is a big deal for me right now, but I am seeing now, that it’s actually working in my favour because it means I literally can’t just go and get a job etc, which is forcing me to look at my life and re-design it in a way which is going to work for me. 

    I might not be back at the gym everyday which is important to me, but I’ve started to walk a bit more, even if it’s only to the shop, and I’ve got my bike out so I’m going to start going on some bike rides as well. So although I’m frustrated at not being back at the gym everyday, if I manage to go even once in 2 weeks, I now see it’s a step in the right direction. 

  • I'm reading your post with interest since I have similar problems and experiences.

    I am on Universal Credit and my work coach at the job centre has a little autism experience. She used to deal with ESA claims.

    She knows my health and autism background.

    I also have another work advisor at a recruitment agency working with the job centre dealing with problem people like me.

    With all these advisors (4 at the moment) appointments are starting to clash.

    This recruitment agency placed me on a health , fitness and diet course and expects me to attend each week.  One of these sessions clashed with a hospital appointment.  They got very stroppy about me choosing the hospital appointment over them.  I had to attend the hospital one because the job centre knew about it and it formed part of my work search agreement. What I kept from the agency was that the appointment was actually to see a psychiatrist at a mental health unit!

    Then  recently I had a job interview clashing with my job centre appointment. I chose to go to the interview.  Rearranging the job centre appointment was vital otherwise they would sanction me and leave me penniless.  Rearranging in reality was a pain.  Cannot do it with advisor by email or internet.  I had to again call a national number and wait over 40minutes listening to music.

  • Not teaching.  I went to some awful schools.  I saw my maths teacher having her arm crushed in a door as she tried to get into class.

    I could never cope with teaching a class .

  • Looks like you have some decent skills there!  I wish I was good at Maths.

    I know a lot of people on the forums work as teachers and the education system is desperate for Maths teachers.  Is this something you could do, maybe even if it was an evening class or even online with people who wanted to brush up on their skills?  ND people tend to go into lots of details when explaining things so it could be just what some people need to get their heads round the subject.  

  • I used to struggle opening my mail when I was younger, but I found ignoring it just made my problems at the time worse.  I never felt prepared when said people trying to contact me, would call me or demand things of me as I didn't know what they were talking about.

    I now have a system that post is opened every day on the day it is delivered and then it is organised into piles of:

     - Read and acknowledged (no follow-up required)

     - Requires follow-up (this will normally require looking into further information before getting back to the person/organisation)

     - Requires urgent follow-up (this is normally something that needs dealing with now and cannot wait)

    The urgent pile gets addressed first, followed by the follow-up pile which I also organise by deadline date order if necessary to help me tackle things in a logical order.  I have found by doing this, the stress of dealing with post is reduced significantly and I feel more on top of things.

  • That’s a good point but if you ever want to let off steam, you can private message me. 

  • Not sure if I should share my insane childhood on an internet forum.

    Even my NT sister calls our childhood years total madness.  That no one will believe.

  • Hi Robert, I too don’t do well socialising in pubs or other people’s homes. I actually find it weird that people spend so much time in each other’s homes! Lol! I know they probably think I’m weird, and that’s ok. But I have found I’m ok in groups where there is a common interest, such as my art group and if I’m careful not to talk too much and be a better listener, it goes ok and I’m actually learning a thing or two about socialising, although I don’t intend to do it outside a shared interest. 

    I spent many years coming to terms with my upbringing. Lots of disfuntion and probably undiagnosed issues that I’m only just starting to see. But I have come to terms with all that now, although it was important for me to work through it all. 

    I’ve only just started opening mail again although I am working towards a mail free life because mail, along with phone calls, are not something I deal with naturally. A spiritual speaker, Stuart Wilde, who’s dead now, has what he calls a very spiritual approach to dealing with mail. He says make a cardboard shoot (don’t think that’s the right spelling), from the letter box to a shoe box, and when the shoe box is full, empty it in the bin and start again. That’s my idea of dealing with mail! Lol! 

    Are you getting any help with dealing with family issues? Is there anything that you love to do? I think I mostly like to be by myself, but I like to be in nature, so I’m building my strength back up so I can more easily spend more time outdoors. I like riding my bike and now my granddaughter has a bike, I said I would take her on bike rides. I’m no longer ignoring or minimising my challenges and I can see they’re not going to go away, so I’m creating a lifestyle that will meet all of my needs and slowly but surely, I’m getting there. Don’t worry about how long your comments will be, if it helps you to share your struggles, go ahead. 

    Anyway, I’m not happy you’re in the situation you’re in but it helps me to know I’m not alone and if I can be of help in anyway, I’m happy to help. 

Reply
  • Hi Robert, I too don’t do well socialising in pubs or other people’s homes. I actually find it weird that people spend so much time in each other’s homes! Lol! I know they probably think I’m weird, and that’s ok. But I have found I’m ok in groups where there is a common interest, such as my art group and if I’m careful not to talk too much and be a better listener, it goes ok and I’m actually learning a thing or two about socialising, although I don’t intend to do it outside a shared interest. 

    I spent many years coming to terms with my upbringing. Lots of disfuntion and probably undiagnosed issues that I’m only just starting to see. But I have come to terms with all that now, although it was important for me to work through it all. 

    I’ve only just started opening mail again although I am working towards a mail free life because mail, along with phone calls, are not something I deal with naturally. A spiritual speaker, Stuart Wilde, who’s dead now, has what he calls a very spiritual approach to dealing with mail. He says make a cardboard shoot (don’t think that’s the right spelling), from the letter box to a shoe box, and when the shoe box is full, empty it in the bin and start again. That’s my idea of dealing with mail! Lol! 

    Are you getting any help with dealing with family issues? Is there anything that you love to do? I think I mostly like to be by myself, but I like to be in nature, so I’m building my strength back up so I can more easily spend more time outdoors. I like riding my bike and now my granddaughter has a bike, I said I would take her on bike rides. I’m no longer ignoring or minimising my challenges and I can see they’re not going to go away, so I’m creating a lifestyle that will meet all of my needs and slowly but surely, I’m getting there. Don’t worry about how long your comments will be, if it helps you to share your struggles, go ahead. 

    Anyway, I’m not happy you’re in the situation you’re in but it helps me to know I’m not alone and if I can be of help in anyway, I’m happy to help. 

Children
  • I used to struggle opening my mail when I was younger, but I found ignoring it just made my problems at the time worse.  I never felt prepared when said people trying to contact me, would call me or demand things of me as I didn't know what they were talking about.

    I now have a system that post is opened every day on the day it is delivered and then it is organised into piles of:

     - Read and acknowledged (no follow-up required)

     - Requires follow-up (this will normally require looking into further information before getting back to the person/organisation)

     - Requires urgent follow-up (this is normally something that needs dealing with now and cannot wait)

    The urgent pile gets addressed first, followed by the follow-up pile which I also organise by deadline date order if necessary to help me tackle things in a logical order.  I have found by doing this, the stress of dealing with post is reduced significantly and I feel more on top of things.

  • That’s a good point but if you ever want to let off steam, you can private message me. 

  • Not sure if I should share my insane childhood on an internet forum.

    Even my NT sister calls our childhood years total madness.  That no one will believe.