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
  • Hi Starbuck

    It will be little consolation i expect but i can identify  with so much of your issues and Martian Tom's.

    I am in a period of real struggle right now and i have been here before and it should improve but you do feel that you can't keep doing this indefinetly

    I was disgnosed age 42 about 5 years ago and after the shock as i didn't even know what aspergers was(although i have always felt different and struggled with life) i expected there would be appropriate treatment to limit its effect but i am still trying to find some real practical help.As martian Tom said it seems that apart from medication there is little real help that makes a difference which makes it worse as you feel there is no light at the end of the tunnel.

    I practice Trancendental mediation(TM) a number of times a day just to be able to function but you may want to look at this as it really helps with stress and anxiety and  there are other benefits too.I work too and maybe if you did a 20  minute TM during your lunch break it would help you for the rest of the day and then 1 in the evening

    Regards

    Peter

  • Hi Peter,

    I have done a bit of meditation before and have found that it does help with my anxiety so you are right to suggest that I should look into this again.

    I have just seen my GP and have been signed off work for two weeks for anxiety with depression.  I have just got to figure out how to break the news to my boss now as he won't be best pleased and the company isn't great at dealing with people with mental health illnesses.  

    I got asked the age of questions today by the GP of how can I help you?  What can I do for you that will help you?  She wanted to help and at least listened so that in itself is something, but I don't have the answers that they need.  I am asking them for help as I don't know what to do and have exhausted all options that I can think of or have the power to implement.  She reassured me that she would look into the matter to see what resources were available, but like you said in your post, there is little real help and medication isn't an option for me due to me being hypersensitive to it.

    At the moment, I need that light at the end of the tunnel to keep me going and I am struggling to find it presently.  I will try your recommendation of practicing meditation again and hope that my GP can fathom something in the meantime.

    For me this is the worst stage, where you have battled on for so long and then you have no fight left in you and no solution to the situation.  I hate feeling hopeless, but as always you have to grit your teeth, buckle up and battle through it.

  • I can identify with this so well Starbuck. I’m glad you have a kind and listening Gp. I have more or less decided that I just don’t have the fight left In me especially without support to do battle to appeal for the higher rate of pip. I know I will lose out financially but I just don’t have any stamina left so feeling annoyed with myself. I am attempting the beginnings of the couch to 5k and achieved the first week so will take it week by week and see how it goes. Like Blueray I’m back to basics. And like you intolerant to many drugs so natural remedies like eating well and getting out doors has to be my way. I have lived many times /years taking one day at a time. I hope your employers are more tolerant than you are expecting. 

  • I am anti social and living with other people has always been problematic.  I suspect many ND people have similar experiences.    The amount of Universal Credit allocated towards my rent is £433.  Much less than the actual amount £575.  I have applied for a discretionary extra payment and been turned down.  Have asked the landlord to reduce rent, he's refused.  At the moment I feel safe where I'm living.  In a block of flats on the first floor.  In the past in other places there were constant problems with burglaries and funny neighbours.

  • , I am speechless. And I feel so very sorry for you, having read so many of your posts. 

    Your rent is the biggest. Is universal credit pegged to the amount of your rent in some way, or could you "win" by moving somewhere else?

    My current NT wife is from overseas. She's told me that in the past, she shared a rented room with other girls to help make ends meet. Not a great solution, but better than starving. I had to rent just a room whilst going through my divorce from wife #1. 

  • My finances. I have been living off savings and borrowing money from family.

    Per calendar month.

    Income £731 Universal credit.  

    This is lower than it should be because the council is taking a cut directly for last year's council tax.

    Outgoings

    Rent £575.  Not paying full amount so letting agency is threatening to add  a penalty of £12 per month and are threatening to evict me.

    Bank overdraft fees £25.  Total overdraft over £600.

    Gas £40 this includes money taken to pay last year's debt.

    Electricity £30 .  So far not paying full amount

    Water £40. Special social tariff

    Tv licence expired 31 Oct ???!!!!!

    This year's Council tax £22

    Internet £20

    Travel £0 I walk.

    Food no money left.  Will start drinking tap water.

  • I hope you have more luck with them.  What a nightmare and I can't believe the agencies you have been working with have been so unhelpful - kind of makes you think what is their point?

    I've just had a look what financial support might be available and other than the usual benefits route, I stumbled across this - https://www.turn2us.org.uk/

    Note sure if it is applicable for your situation, but Citizen Advice can also help you fill out any forms should you need help with this.

  • I have found autismworks.co.uk. And I have registered with them.

  • I have described in previous threads that I have four agencies helping me.  But no practical results. Will look for autism experts on the net.

  • I was given to understand that there are specialised employment agencies that recruit for people with autism, is that real? I'm sure I saw something on TV about it.

  • Actually things are getting worse.  My financial problems just keep getting worse.

    My job prospects are not getting better.  Multiple advisors but not much progress.  My main obstacles seem to be long gaps in my employment history (difficult to explain).  Not enough relevant experience, I make people feel uneasy, I often say something inappropriate( without realising it),. The last interviews through the recruitment agency gave feedback that I am a bit quirky.  They actually used the word quirky.  And they want normal people who will fit in without problems.

  • Hope things have got easier Robert123.  I have now been signed off work and my employer wants to know what I am doing to try and get myself well again.  Unfortunately I am now stuck in the NHS bureaucracy system, where my referral is going round like a game of pass the parcel and no one really knows what to do with me.  So yet again I am at the mercy of the system to provide a solution in order to reassure my boss I am still capable of doing my job.

    In fact, I might have to make some phone calls soon to chase up what is actually happening.

    Lonewarrior you are right to point out that we struggle to fit within the guidelines.  I think we all work incredibly hard to remain and succeed in work, whilst the majority with ASD struggle to get into work in the first place, due to not being given a chance or reasonable adjustments not being made.  I think most people would jump at a suitable job that meant they could be independent and not rely on the system to look after them.  I wish more people would see this as surely this will help tackle anxiety and depression issues linked to the stress of getting a job or holding down work due to a lack of understanding?

    The solution seems simple to me, but what do I know? :-)

Reply
  • Hope things have got easier Robert123.  I have now been signed off work and my employer wants to know what I am doing to try and get myself well again.  Unfortunately I am now stuck in the NHS bureaucracy system, where my referral is going round like a game of pass the parcel and no one really knows what to do with me.  So yet again I am at the mercy of the system to provide a solution in order to reassure my boss I am still capable of doing my job.

    In fact, I might have to make some phone calls soon to chase up what is actually happening.

    Lonewarrior you are right to point out that we struggle to fit within the guidelines.  I think we all work incredibly hard to remain and succeed in work, whilst the majority with ASD struggle to get into work in the first place, due to not being given a chance or reasonable adjustments not being made.  I think most people would jump at a suitable job that meant they could be independent and not rely on the system to look after them.  I wish more people would see this as surely this will help tackle anxiety and depression issues linked to the stress of getting a job or holding down work due to a lack of understanding?

    The solution seems simple to me, but what do I know? :-)

Children
  • I am anti social and living with other people has always been problematic.  I suspect many ND people have similar experiences.    The amount of Universal Credit allocated towards my rent is £433.  Much less than the actual amount £575.  I have applied for a discretionary extra payment and been turned down.  Have asked the landlord to reduce rent, he's refused.  At the moment I feel safe where I'm living.  In a block of flats on the first floor.  In the past in other places there were constant problems with burglaries and funny neighbours.

  • , I am speechless. And I feel so very sorry for you, having read so many of your posts. 

    Your rent is the biggest. Is universal credit pegged to the amount of your rent in some way, or could you "win" by moving somewhere else?

    My current NT wife is from overseas. She's told me that in the past, she shared a rented room with other girls to help make ends meet. Not a great solution, but better than starving. I had to rent just a room whilst going through my divorce from wife #1. 

  • My finances. I have been living off savings and borrowing money from family.

    Per calendar month.

    Income £731 Universal credit.  

    This is lower than it should be because the council is taking a cut directly for last year's council tax.

    Outgoings

    Rent £575.  Not paying full amount so letting agency is threatening to add  a penalty of £12 per month and are threatening to evict me.

    Bank overdraft fees £25.  Total overdraft over £600.

    Gas £40 this includes money taken to pay last year's debt.

    Electricity £30 .  So far not paying full amount

    Water £40. Special social tariff

    Tv licence expired 31 Oct ???!!!!!

    This year's Council tax £22

    Internet £20

    Travel £0 I walk.

    Food no money left.  Will start drinking tap water.

  • I hope you have more luck with them.  What a nightmare and I can't believe the agencies you have been working with have been so unhelpful - kind of makes you think what is their point?

    I've just had a look what financial support might be available and other than the usual benefits route, I stumbled across this - https://www.turn2us.org.uk/

    Note sure if it is applicable for your situation, but Citizen Advice can also help you fill out any forms should you need help with this.

  • I have found autismworks.co.uk. And I have registered with them.

  • I have described in previous threads that I have four agencies helping me.  But no practical results. Will look for autism experts on the net.

  • I was given to understand that there are specialised employment agencies that recruit for people with autism, is that real? I'm sure I saw something on TV about it.

  • Actually things are getting worse.  My financial problems just keep getting worse.

    My job prospects are not getting better.  Multiple advisors but not much progress.  My main obstacles seem to be long gaps in my employment history (difficult to explain).  Not enough relevant experience, I make people feel uneasy, I often say something inappropriate( without realising it),. The last interviews through the recruitment agency gave feedback that I am a bit quirky.  They actually used the word quirky.  And they want normal people who will fit in without problems.