The End

People say I’m intelligent; I am. The chronic fatigue fuzzes my brain and makes it hard to concentrate. The autism makes it difficult to get what is in my brain out either spoken or written (except technical stuff). I forget many things (I once spent an entire year unable to remember how old I was).

You’ll say that it must be frustrating.

Technically, I have been very good at every sport I have put my hand to (football, tennis, badminton, squash, distance running, etc.) and have enjoyed them. But, I am exhausted and can’t do any of them anymore.
As the years have passed I’ve become more tired. There is no hope of me doing sports again.

You’ll say that it must be frustrating.

I often can’t tell when someone is teasing me or putting me down. I never know whether a woman is flirting with me or just being nice. I struggle with basic conversational small talk. During conversations I’ll suddenly get tired and my brain will shut down and I’ll struggle to say anything. Selective Mutism means that in certain situations or with certain people I cannot talk at all. I can’t maintain friendships.

You’ll say that it must be frustrating.

In some way, I am in pain every day. My legs burn with fatigue. Cold weather makes the joints in my hands stiff and painful. Pinched muscles in both shoulders. Inflamed right bicep. Tendon pain in left knee. Lower back pain. Severe headaches; 2-3 each week which can each last up to 3 days. Painkillers don’t seem to work and I always forget to do exercises that physios have given me.

You’ll say that it must be frustrating.

Drs messing about with my medication resulting in various horrible side effects:
Excess sweating
Loss of libido
Brain zaps
No endorphins (runners high)
Waves of fuzzy electricity flowing over my head and shoulders every time I move my head or eyes
Murderous ideation (19 years ago)
Muscle spasms/twitches

You’ll say that it must be frustrating.

People say I’m an eloquent writer. I find writing this kind of stuff very difficult. It’s taken months to get these words out of my head and onto paper.

You’ll say that it must be frustrating.

“Frustrating” isn’t strong enough of a word for what it is.

I’ve had enough; I can’t deal with this anymore. I’ve tried to get help, but, Drs have no solutions. I will always be tired (CFS/ME since 1985). My brain will never work properly (autism). I have no control over anxiety/stress. I am always going to be a target for people to take advantage/bully me.

Mum & dad, I love you. I am very sorry for the pain that I have/am putting you through. I wish it hadn’t come to this.

Kate & Kelly; I am proud of what you both have achieved doing what you both love. You are both awesome sisters!

John, Marianne, Izzie & Ben. I love you guys so much.

Mark, Nick, Stu; Growing up with you was great. I’m glad you guys are doing well in life.

The Hibbitts. I know we haven’t talked much in recent years, but, I have good memories of working/drinking/wedding’ing with you. Sing Danny Boy for me.

John, Ashleigh & Vicky; I have really enjoyed working and hanging out with you over the years. You’ve been a good influence on my life. Special thanks to Vicky for all of the FB messages you’ve sent; they kept me going. Keep watching crappy movies!

This is not a rash decision, but is something I have thought about for many years. Given my health problems (CFS/ME, Autism, IBS, excess acid, eczema, various pain) I can’t imagine a good/happy/healthy future. I will always be hurting.

I wish I could write more, but, I don’t know how to.

Goodbye everyone.

If there’s an afterlife, I hope it’s full of cats.

So Simple

So simple,
to slip the loop around my neck,
let my legs go limp,
the darkness will embrace me.

Why am I afraid,
the pain I will feel,
cannot match,
that which I flee.

On the edge of tears,
they will not flow,
the life I have lived,
was not what I wanted.

My time here has ended,
the pain will be no more,
goodbye world,
I didn’t like you.

Letter to Clare M – 6 April 2015

6th April 2015

You said that I should call the Crisis team if I have problems, but, I don’t trust them. This is because of how they treated me when I was referred to them by my GP (told me to go back to my GP).

When I did get a care worker from them he just made empty promises (meeting frequency, access to services, setting up a meeting with a psychiatrist). He also arranged for a colleague to visit when he couldn’t make it. This colleague turned up an hour late and did not introduce himself when I answered the door (in fact, he spent 2-3 minutes talking on the phone before even saying hello).

I cannot see any reason why I could expect any help from them.

I was surprised to get your call asking if you could speak to Dr Ramesh about my situation. When I last was him he said he would keep in touch with me and monitor my situation. Another empty promise I guess…

With regards to my relationship with you, I find myself shutting down and withdrawing into myself on Tuesday evenings and Wednesday mornings. I don’t know why this is. Maybe, subconsciously, it’s because you didn’t seem to take any notice of the letters I wrote to you you on 19 March 2014 and 7 April 2014 (copies enclosed). You seemed to only take notice when I made it clear that I wanted nothing to do with Clara (letter dated 26 May 2014)

Maybe it’s because I have always had trouble with getting my voice to be heard (parents having real/fake hearing problems) and you have trouble hearing me (two reasons: your hearing problems and intellectual/psychological (you failed to understand what I meant when I was talking about wanting help from my dad to buy a car (not monetary))). You also didn’t grasp what I was saying in regards to mindfulness making me feel worse.

Maybe it’s because I have had a feeling that once you got me embedded with Dash you would cut me loose without having addressed my depression.

Maybe it’s because when I was younger (don’t remember age) my parents forced me to tell them how I was feeling (don’t remember what I said) which made my mum cry and my dad tell me off.

I don’t have much of a voice or words to express, but, in my dealings with Swindon mental health services I don’t feel that I have been heard. Maybe this is an unfair generalisation as some people at some times have heard me.

I appreciate your frustration when you ask me questions that I cannot answer. All I get are images flashing through my mind that I either cannot put into words or the words get stuck in my throat. I have no solution to this.

I am ready to give up. I think the people at Dash are idiots (clients not Angie) and I don’t think there is anything that SEQOL can do to fix my exhaustion.

There is no hope or future for me. I am ready to give up.

Letter to Clare M – 28 May 2014

Clare M – Psychological Therapies Service


I am writing with regards to the letter I have received from Clara and would like to set the record straight. The letter says that I did not attend the appointment on 16th May. I disagree with this as I did attend the appointment on 13th May which Dr Ramesh did not. When I arrived I was told it had been cancelled. Why was I not informed of this?

With regards to Clara, you appear to have ignored my previous letters. She is a liar and I want nothing to do with her. From now on, I will not speak to her, I will not listen to her and any further letters from her will be binned.

Please do not construe this as a refusal for help as I would appreciate it if you would arrange another appointment with Dr Ramesh. I would also appreciate it if you would ensure that he turns up to it.

Letter to Clare M – 14 April 2014

Clare M – Psychological Therapies Service


I have given this a lot of thought and I honestly don’t think that yet another label is going to help me. I already have plenty (CFS/ME, Eczema, IBS, Acid reflux) and having the label does nothing to help me cope. I am fed up with coping and just want it all to end.

So far, I have received no help and no hope of receiving help. All I have received are lies and broken promises.

On more than one occasion, Clara has either lied to me or about me and I have no desire to have anything to do with her. I also do not believe that she is in anyway capable of meeting my mental health needs.

I hope you take this into consideration with regards to any further contact we have.

Letter to Clare M – 19 March 2014

Clare M – Psychological Therapies Service

Thank you for your letter and I look forward to meeting with you next Wednesday. I do not, however, look forward to meeting with Clara.

On more than one occasion, Clara has either lied to me or about me and I have no desire to have anything to do with her. I also do not believe that she is in anyway capable of meeting my mental health needs.

I hope you take this into consideration with regards to the meeting next week.

The continuation

Still being messed around. They’ve changed my medicine twice and I now feel worse than ever.

My head feels like it’s about to explode, I feel nauseous, week, tired and I have intermittent chest pains.

This can’t go on for much longer.

The story

I have had Chronic Fatigue Syndrome since 1985, the main symptoms are constant tiredness, lack of physical and mental stamina. I also have Eczema, Irritable Bowel Syndrome, Acid Reflux, Chronic Headaches, Anxiety and Depression with suicidal thoughts.

At various times I have tried to get help with the depression and only recently have I been taken seriously. Below is a simple summary of the care I have received. Much of this is written from memory and is therefore open to error.

  • 21st October – Dr Steptoe (GP) – Citalopram increased to 40mg – referred to Lift Psychology
  • 28th October – Rachael (Lift Psychology) – Advised to get signed off work
  • 28th October – Dr Steptoe (GP) – Signed Off for ten days
  • 4th November – Caroline & Brian – Lift Psychology Stress & Low Mood Course
  • 7th November – Dr Stephenson (GP) – Signed off for a month – Referred to Sandalwood Court
  • 11th November – Caroline & Brian – Lift Psychology Stress & Low Mood Course
  • 15th November – Met Hope, Psychiatric Nurse (Sandalwood Court) – Referred to Intensive Care Team
  • 16th November – Met Emma (Intensive Care Team at Sandalwood Court) – Told to go back to my GP
  • 18th November – Caroline & Brian – Lift Psychology Stress & Low Mood Course
  • 19th November – Dr Steptoe (GP) – Told to call Intensive Care Team and make appointment with Lift Counsellor. Dr also said would call Intensive Care Team
  • 20th November – Caroline (Lift Psychology) – She said she would call Intensive Care Team
  • 21st November – John (Intensive Care Team) – Discussed my situation. Made appointment for following day.
  • 22nd November – John (Intensive Care Team) – Discussed care plan. Made appointment for his colleague to meet me on Monday 25th November between 3pm and 5pm. I stressed the importance of the appointment being before 5pm as I had to go the the Lift Psychology course which starts at 6:30pm. Made another appointment with John for Wednesday 27th November at 11am with him and Psychologist. He said he would bring a care plan to sign.
  • 25th November – Doorbell rang at 6pm. Person at the door was on his mobile telling someone that he would be back in the office in 20 minutes. When he had finished his conversation he asked if he could come in. I declined, not knowing who he was. He then said he was with Swindon Mental Health and asked if I wanted to talk. I still declined as I was due to having to go to the Lift Psychology Stress & Low Mood Course
  • 25th November – Caroline & Brian – Lift Psychology Stress & Low Mood Course
  • 26th November – Lisa (Intensive Care Team) – Called to let me know that I would receive a call the next day to make an appointment with the Psychologist
  • 27th November – Psychologist – Arrived at 11:30 without John, but with a student nurse (Lisa?) instead. After talking told me I have mild Aspergers/Autism and he will discuss with colleagues who I should be referred to next
  • 29th November – Letter from the Recovery Team – They will call me
  • 2nd December – Lisa (Intensive Care Team) – Called to make an appointment
  • 3rd December – Emma (Intensive Care Team) – They have referred me to the Recovery Team for long term care as the Intensive Care Team is only short term (4 weeks). She said she would get them to call me urgently
  • 4th December – Clara (Recovery Team) – Didn’t seem to know anything about me. When I told her what the Psychologist had said, she told me that I therefore didn’t have a mental illness and didn’t know why I had been referred to the Recovery Team and that I should go back to my GP. She did relent and said she would make an appointment with her Psychologist
  • 5th December – Dr Tomboline (GP) – Signed off for a month. He called the Intensive Care Team and told them to call me
  • 5th December – Emma (Intensive Care Team) – Called me thinking she was calling Dr Tomboline. Seemed surprised that Clara did not know why I was referred to the Recovery Team. Made appointment to visit me with Clara at 3:30pm, 6th December