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.
Jeez, number 3 ~ suggesting you get a driving job!!! WTF!!! I totally relate Robert, I recently went to court for eviction but managed to not get evicted but trying to keep up with all the bills etc is not easy; however, so far so good.
Self employement is the way to go for me, but as you said, this takes time, and dealing with all this *** in the meantime, doesn’t make that an easy option and it’s not an immediate one.
They told me, all excited and beside themselves, that I could do work experience in the job centre!!! Again, WTF, they’re not listening to me, what part of that did they think would be helpful to me!?!?!?!?
Anyway, hang in there. Are you receiving PIP?
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.
Writing does help as I find I can communicate better this way, but at the same time venting only achieves so much. I appreciate I need to make some changes, I'm just not sure what to do for the best at the moment. Don't know about you, but when you have to make a big decision, I have to run through all the possible scenarios and outcomes in great detail, which although very helpful at times, can be completely overwhelming in these situations.
From your other posts, you clearly have a lot going on as well.
The fact you have seeked helped is a major step, I just hope you get the help you need. If self-employed is something you would like to do, are there any part-time jobs that could provide a bit of an income whilst you get yourself established? Not sure what your skills are, but wondered if you could contribute these is a job that gives you the flexibility to develop your own business?
Back to my problems/experiences. And my advisors!
Advisor 1 is from the city council. I have to attend meetings with him to continue getting council tax benefit. He is very down to earth, gives practical advice and wants to know everything I am doing to get off benefits. He's told me off a few times. Like when I described a job interview that went wrong when they drilled me about gaps in my work history. And I admitted I was unable to work while recovering from heart failure in that particular year.
His opinion is that I must appear to be the perfect candidate, NO weaknesses,. NO illnesses, NO baggage.
Advisor 2. Is an employment specialist from a mental health charity. He's rewritten my CV, got second opinions from experts who has suggested MOOCs and eventual self employment. Since I am virtually unemployable in the conventional senses.
He however has his own problems, missing meetings, getting times and locations wrong and many short holidays. Not sure what's going in with him.
Advisor 3 is a private recruitment company expert contracted to the job centre. She tries by looking for jobs for me and going through application forms and her colleague does mock interviews.
Unfortunately she sometimes gets things wrong like double booking sessions, sending me for a driver's job (I can't drive or ride a bike. I have slight hand to eye coordination issues).
Advisor 4. Is at the job centre. She has a little autism experience, having dealt with ESA claims before her present post of Universal Credit work coach.
Then I have to deal with unexpected problems like.....
Prosecution for prescription charge fraud!
I am entitled to free prescriptions because I am on Universal Credit and below an earnings threshold. But there isn't a box to tick for universal credit on the back of the prescription. The advice I was given was to tick one of the other boxes of one of the benefits that Universal credit replaces.
But the prescription was checked and they found that I wasn't on the benefit I claimed. So pay a £150 fine plus original cost of medicine. Or it's the county court for fraud!!!!!
I ended up making several phone calls. At the job centre I asked my advisor for help in providing me evidence that I was on Universal Credit. She said it wasn't her problem. She only deals with the job search part of Universal Credit. To get proof I had to make an actual voice call to a national number. ( E-mail and internet contact was not an option) Wait on the line for 40minutes Go through all the security questions and finally they sent me proof, which I forwarded and the prosecution was dropped.
Another rant from me.
Making first appointment to see council tax related employment advisor was also a long drawn out tale. Don't want to bore people with it. But I almost had a breakdown!!!
Bloody hell! If I was as disorganised as these so called professional advisors, then I would lose my job!
It needs to be made clear that people seeking help from these individuals have normally exhausted all options and as such need structured and reliable support. It all seems a bit slap dash from what you have described.
In relation to the prescription issue, can universal credit shouldn't have put you through that, but at least you have proof now to save this issue in the future. I was once criticised by a psychiatrist for not taking my medication. I explained that I didn't think they were helping in the slightest (which I now know they weren't) and that I could see them being value for money based on the fact I was out of work, had little funds to survive on and the cost of the prescriptions would significantly reduce the money I had to use on food. I felt food was more important for my health! I couldn't get free prescriptions at the time and the psychiatrist told me to just fudge the form and say I could claim it as that's what they have done previously and they never got caught! I was also told that if I didn't take my medication, then I was seen as not cooperating with the services offered and would therefore be removed from the service as a result. I was shocked that I was being told and encouraged to do this. As a result I removed myself from the service on morale grounds.
I hope the initial stress from this incident has subsided and you are able to collect your thoughts for other matters. If the advisors are proving no help at all, is it worth letting the job centre know? They might be able to recommend a better person or company to work with.
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.
The prescription charge case is not over. I had to provide proof of earnings/income for that particular month!
Future prescriptions if the problem occurs will require new proof of income. The new advice I've been given is that in addition to ticking one of the other boxes, I should also hand write Universal Credit on the back of the prescription.
My council tax problem was a complete farce.
To get council tax benefit, I have to attend regular appointments with an employment advisor. For my first appointment I got a letter asking me to contact them within 28 days to make an appointment or face losing my council tax benefit worth almost a thousand pounds a year.
I rang them, went through all the security questions and made the appointment.
A month later I received a letter and a new council tax bill for the full amount, saying because I had not engaged with them, my council tax benefits have been withdrawn.
I tried to phone them. Lines engaged. I went to visit their offices in person. I got sent from one person to another. Finally person no. 5 informed me firmly that my appointment is NOT in the system. I tried again, giving her the details of the date, time and person the appointment was with.
She lost her cool, swung her computer screen round at me to show me that days appointments and that I wasn't there. And there on the computer screen was my name! I pointed at it and said that's my appointment. Her response was, no it isn't, the names do not match, that is a different person.
The problem turned out to be that the name on my letter was.
First name+ middle name + surname.
The name on the screen was.
First name + surname.
The middle name was missing on the screen appointment.
I placed my thumb on the middle name on my letter and tried to reason with her that the names match now.
She lost her cool and told me to get out!
With uniformed security guards patrolling the building I decided not to argue further.
Went home and wrote a formal appeal against their decision and my reasons and experience about that day.
Finally got my council tax benefit back.
I still think the whole mess was ridiculous because in addition to my name they have my address, account number, claim number, national insurance number.
Another rant over for now.
I’m sorry you are going through such a tough time, it’s good that you’ve let us know what’s happening/how you feel. Many people have similar thoughts when coping with so much and we hope you’re okay.
If you are ever unable to cope with the distress or despair, it’s very important to tell someone about your feelings or thoughts of suicide. Call your GP and make an urgent appointment. Your GP can make sure you get appropriate help and support.
If it’s outside your GP hours call 111 to reach the NHS 111 service: http://www.nhs.uk/NHSEngland/AboutNHSservices/Emergencyandurgentcareservices/Pages/NHS-111.aspx
The Samaritans also provide confidential non-judgemental emotional support, 24 hours a day on 116 123, or by email on email@example.com.
MIND have information pages on coping with self harm or suicidal feelings based on the experiences of people who’ve been through it that you may find helpful.
If you are very close to doing something to hurt yourself - call 999 or go to your nearest A&E department. There should be someone there to support you and make sure you get ongoing support.
If you need help with an autism related issue, our helpline can be emailed on firstname.lastname@example.org or they’re open Monday to Thursday 10am-4pm and Friday 9am-3pm on 0808 800 4104.
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.
Yeah, all the appointments are exhausting and mine are starting to clash. In fact, I have 3 set up at the same time/same day this week, and the one I would love to go to would be my autism group/so that’s not really an appointment but it’s one that I get an incredible amount of value from and one I said I wouldn’t miss! The other two are with my psychiatrist and a meeting at the job centre. Guess which one I will attend if it is still going ahead ~ the job centre!!! The one I would least like to attend! Fortunately, the work coach communicates with me through the universal credit online portal thing or she will let me know beforehand if she’s going to contact me by phone and I can send her messages online. The thing is, it’s like my life is in their hands at the minute, so not only did I tell the work coach, what life is really like for me, and that her help is not actually helping, I also contacted a benefits/advocacy support service who are going to help me get the right benefits for me but also look at what other Support I can get, that will actually help me. Even the thought of having to rearrange one of these appointments makes me not want to get out of bed, so they’re not helping. She changed my weekly appointment at the job centre from a Thursday to a Friday so o told her how that effected me.
I’m finding that, unless their support is helping me, I don’t want it because the cost is more than I am willing to pay. I need their financial support right now, and I’m open to any other support they can offer me, but getting me to look for jobs that are not suitable to me or that don’t meet my needs, is not helpful to me and I realised that I had to be honest with them about that. I made sure I had the back up from the disability advocacy group first, then I started revealing to them that their help isn’t working. I’m not stupid, lazy or work shy but I’m not neurotypical, otherwise I wouldn’t have a diagnosis and I’m starting to stand up for myself, probably for the first time in my life. I don’t want to waste any more time trying to fit in with a world that isn’t prepared for me. And even though that might pose a problem to them, I refuse to see myself as a problem. I have challenges, and ignoring them or pretending they don’t exist, doesn’t serve me in the least and they won’t know about them unless I tell them. My work coach says she has experience of working with autistic people, but as the saying goes, if you’ve met one autistic person, you’ve met one autistic person. So far she’s been very supportive, so we’ll see what happens.
It’s fun being me when I can be me but when I come into contact with the outside world, it’s not fun, so I have to work out a way I can connect with and to live in this world, while still being me. I think I’ve got that right under the human rights act as well as other acts. There’s a gap in the market for people with high functioning autism, so maybe it’s time to reinvent the wheel. There is support out there, and although it might not be readily available, I will find it, and it might be that the only suppprt the job centre can give me right now, is financial support, so I’ll take that, and make it work for me.
For some people, paid work, might be beyond their capacity and if that is the case, that should be respected, honoured and supported and the person should be supported to live their life in a way that suits them. Right now, going out to do a job is too much for me, although I’ve found an opportunity delivering parcels for amazon flex, which I’m investigating, as a way of doing some part time work that won’t overshadow my long term plans.
When I spoke to the woman at the advocacy service, she said there are a lot of people like us out there, so she has experience of these situations and she’s confident they can help me.