Author Archives: Mikeyquake45

Domestic Abuse Survivor

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This is one of the hardest things I’ve ever had to write or admit to – I’m a domestic abuse survivor.

I feel so ashamed and I’m full of guilt – because although at the time I didn’t realise what was happening due to the fear and the Coercive behaviour towards me – I did allow myself to become a victim and I didn’t speak up sooner.

With hindsight it was obvious what was happening and what was being done to me, but at the time I just thought I was being foolish and over reacting. I was ashamed to talk to anyone about it.

10 years have passed since these events and I now feel the need to talk about my experience. This is not about playing the ‘victim card’ or about getting punishment, but for the need to be able to let go of the things that have shaped my life and to try and start a new chapter. Some parts of my life during these dark times people already know and others, well I haven’t told anyone about it until now.

Back in 2003 I was living in London and met Steve online. We started chatting online then we were calling each other and when we first met, he really did sweep me off my feet. We started dating and getting closer and closer. We started talking about looking for a place together but we both agreed that London was too expensive for us and so we started to look further a field. We finally settled on moving to Manchester. After a number of wonderful weekends away in Manchester we found a 2 bedroom flat that we fell in love with and decided to put a deposit down for. We like any couple said we’d split all the bills and costs 50/50. Steve couldn’t afford to put any money towards the deposit at the time, and we didn’t want to miss the opportunity of getting this flat, so I paid the deposit in full from my bank account. We set a date to move to Manchester and both handed in our notices at our current jobs. We both went job hunting to try and find new jobs that we could start straight away when we moved and in July 2004 we made the move from London to Manchester.

For the first couple of months, things were going well for me and Steve in Manchester and we were finding our feet. Then we both left our jobs within a couple of weeks of each other, me due to bullying and him because he wasn’t happy at his current work place – which was a big problem as we didn’t have any money coming in. Steve wasn’t able to take out a loan due to previous debt but I had never had any debt or loans in past so I approached my bank and took out a big loan, to help us properly settle in and to cover the bills while we were both not working. As it was only me with some money, we set up all the bills in my name only (something I’d later regret), but at the time seemed perfectly normal. We both job hunted and I was lucky enough to find a job within a couple of weeks. He kept saying he couldn’t find a job which met his skill sets and would keep looking and promised to help with the bills when he was employed. We brought a little male Kitten to keep us company around the flat and called him Jarrod, who would become my constant companion and my main reason for carrying on in life.

The following years we had our ups and downs like any relationship. I kept on paying all the bills and after a while I just stopped asking Steve how the job hunt was going as each time it came up he would get angry and belittle me and would end up making me feel like it was my fault. While I was working, he was making friends in Manchester and eventually on all my days off he would be ‘away’ staying at his friends house or going on trips away with them leaving me on my own. I spent a couple of New Years, Christmases and birthdays sat on my own, feeling down and alone. If I brought it up, I was stifling his life and not wanting him to have friends. In the end we decided to end our relationship as it wasn’t making us happy and we were arguing anytime we saw each other. It was a mutual split and we ended on good terms. We decided to just be flatmates and as we had to 2 bedrooms in the flat it wasn’t a difficult decision. I carried on paying the bills without help from Steve and this just became the norm, there was always an excuse – and I didn’t want to make him angry.

After a couple of weeks of ending our relationship, Steve said that he and one of his ‘friends’- James – who he had been going and staying with – wanted to make a go of it and become a couple. Steve wanted James to move into the flat with him. I was told that as James already had a job he would help with the bills and we would split them them 3 ways. I felt backed into a corner as I couldn’t afford the flat on my own and I also couldn’t afford to move out and after years of living pay-cheque to pay-cheque, any help with the bills would be very welcome.

James moved in and for the first 2 months I did get help with the bills, but after that the excuses started. He wasn’t earning as much as me or he had an unexpected bill. So when a job came up at my workplace I mentioned it to James and we started working at the same place, albeit on different shifts. As our shifts didn’t match we agreed that as they ate earlier, they would cook my meal at the same time and I’d reheat it when I got home. This soon stopped after a while. I spent most of my day off and evenings in my room as they had control over the tv in the front room and so I would only venture out my room to use the bathroom or the kitchen. Any other time it was to complaints of needing to give them ‘space’ as they were in a relationship and couldn’t be affectionate around me.

The status quo kept going on. Banished to my room, while I pay all the bills and I do mean all the bills – The rent, council tax, gas bill, electric bill, water bill, TV license, telephone and loan repayments. I was paying all the bills in full without any support from them. When any issues arose – such as a late bill or something needing repairing in the flat – It was left to me to sort out and if it wasn’t done quick enough I’d get shouted at and belittled. Steve had not been working practically since we moved in and wasn’t actively looking for work. James was still working at the same company as me, but was on a different contract than me and hadn’t had the years of experience and pay progression that I did, so was earning a lot less and as such he said he couldn’t help with the bills as he was supporting Steve as well. Which I thought at the time was funny cause I was paying for everything.

There was a year that I had done really well in my job and had earned quite a good bonus. I didn’t actively share the news with Steve and James, but as James worked in the same company they found out. They asked to use/borrow £600 of my bonus money in order to purchase two bicycles in order to get out of the flat more, which in turn would allow me to use the front room more and they hoped would be allow them to travel to different parts of Manchester to job hunt for Steve. They promised to repay it at £50 a month starting next month when James got paid. It all sounded reasonable to me so I agreed. They went and purchased the bikes and within days of buying them they returned them to the store for a full refund. I was told that the bikes had multiple issues and weren’t suitable, but they were going to go and get replacement bikes from another shop, needless to say this didn’t happen and I never saw my bonus money again.

In 2010 my health took a nose dive. I had managed to injure my knee quite seriously. After numerous hospital trips, it was decided that I would need major surgery on my knee to reconstruct my knee joint and have several pins inserted to hold it all in place. The day of my surgery came, I was meant to be in hospital for 1 night and be sent home the next day. But after several complications I was in hospital for a week. Throughout my hospital stay, Steve and Jimmy never visited or enquired how I was doing. It was only when I had been released from hospital and made it home that they realised how serious it was. I was bed bound for months and was off work for almost 7 months – so they had to do everything for me and had to keep the flat running, although I was using my sick pay to pay for everything still. It was during this time that I began to realise they weren’t the caring friends I thought. As I was at home all day I could see that they would spend there ‘free’ time going to the shops or eating out and enjoying themselves but what really crushed me was the holiday. They decided they needed a break away and so went away for 2 weeks. While I was bed bound they really did leave me to fend for myself (Although they did graciously move the microwave into the front room so that I wouldn’t have to struggle to reach the kitchen!). I realised after coping on my own for 2 weeks that I could do things myself and didn’t need them. It took another 2 years and numerous hospital visits to recover from the surgery and feel more like myself again. James in the meantime had left the company I was working for and found another job elsewhere.

After fighting to get back to full health and getting back into the swing of things at work. I was more assertive and determined to sort my ‘home life’ out. I would get the same excuses and the retelling of lies, so one day at the start of 2012 when I came home from work I asked Steve if we could all sit down and talk about the flat. James was still at work and Steve kept pushing to know what I wanted to talk about and I simply said about moving out. I honestly did have the intention of saying if they can’t cover half the bills for this flat lets all find somewhere else that’s cheaper and more manageable, but I never got the chance to have a proper chat about things.

From that one attempt at a discussion things went down hill very fast. Straight after that conversation, I was given the silent treatment from both Steve and James, questions would go unanswered and I was completely ignored and shut out. So I started looking to find somewhere else to live on my own and through sheer luck found a perfect flat close to were I was working – and significantly cheaper on all counts. So I made an offer which was accepted. The new landlord wanted to do some renovations before I moved in and I thought it was unfair, no matter the treatment I had received, to leave Steve and James in the lurch so I agreed with the new landlord that I’d move in 2 months time. I told Steve that I had found somewhere else and that I was moving out in 2 months and that I had given notice to our current landlord that I was leaving and that the landlord said Steve could either give notice himself or stay and pay the rent and bills himself. Yet again I got the silent treatment, no reaction what so ever. I started to purchase things for my new flat e.g. toaster, kettle and put them in boxes with other things that I had already started to pack up. But, I soon started to notice when I came home from work, I’d find things in my room that had been moved or broken. I questioned it but the silent treatment continued. I began to lock important things away in a cabinet that had a lock on it. One night I finished a late shift and came home at 11pm to find cat poo smeared on the underside of my mattress and on the walls. It would have been impossible for Jarrod (my Cat) to get it where it was, so it was definitely put there deliberately. I spent hours cleaning it up before I could go to bed, which I think was the reason it was done – as I had to be up at 6am for a morning shift at work, which they knew I was on. It all came to a head when I came home from work on a Monday to find splinters of wood on the floor of my bedroom. After investigating I found the top of the cabinet of draws that I had locked things away in had been prised off. I went through everything and found nothing had been broken and nothing had gone missing but I just felt so violated and that was the last straw. The next day, Tuesday, I arranged for an emergency couple of days off work with my manager and spoke to my new Landlord, who thankfully was incredibly supportive and gave me the keys to my new flat that day. I picked up the new keys and started packing everything in my room into boxes. In the meantime while I was rushing about to get more boxes and getting things ready in the new flat, I came home to find post it notes started appearing on things in my room, stating that this particular thing belonged to Steve or to James. Clearly they had been in my room again. After a few hurried and panicky phone calls, my friends and family dropped everything to come and help me move. I let our current landlord know that things had changed and I was leaving immediately and, taking the higher ground, I paid the rent and the bills for a month – so at the very least Steve and James would have a month to find somewhere else. I moved out on the Wednesday of that week and that was the last time I saw either Steve or James in person.

The abuse started almost immediately and not just directed at me but derogatory things were said about my family. The day after I moved out, I went to use the new toaster and kettle that I bought and found that neither was working. At first I just thought these were faulty and I’d return them, but one of my friends and my dad both had a look at them and found that wires inside the plug had been cut and the heating element in the toaster had been damaged. Had the toaster and kettle worked they would have been ‘live’ to the touch. My dad was furious at this – as he recalled a conversation he’d had with Steve, where Steve said he had done a similar thing to someone else. Steve and James had plenty of access to these when they were stored in my room. Unfortunately, with my friend and my dad taking them apart and touching them, there was no evidence left that I could report. As I started going through the boxes and unpacking, I began to realise that a lot of things had gone missing. Some entire boxes that I had packed never made it to the new flat. I’m guessing these had been taken by the now Ex-flatmates when it was all boxed up in my room. As I didn’t want anything else to do with them, I just wrote them off as lost, I wasn’t going to give them the satisfaction of chasing them for things.

After the move, I didn’t have access to the Internet for a few weeks as I need to get a new telephone line installed at the new flat and once I did get access, a whole new can of worms was unleashed. I found that I was ‘locked’ out of every online account that I had ever had – from emails, social media to shopping sites – all my passwords weren’t working. So I set up a new email address to try and recover these accounts and shared this new email address with close friends and family and started getting reports that they were receiving abusive, aggressive and derogatory emails from my old email address. From the messages that had been sent, it was clear it was the old flatmates (Steve & James) who had ‘hacked’ my accounts. It finally dawned on me why the top had been prised off the cabinet of draws back in my old flat – it was to get all my passwords and ID’s to all my accounts. Some of my accounts they had deleted completely so I was only able to recover access to 75% of them. I’m now a lot more careful and have increased security with all my information as a result.

I was contacted by the old landlord that Steve and James had also moved out and we’d all be required to attend the final inspection of the old flat and get it signed off. The day before the inspection I went with my family to the flat to give it a good clean so that it would hopefully pass the inspection. We found that the flat had been emptied of everything, even though the flat was meant to be partly furnished. They had taken everything. Some of the walls in the flat had been half painted and it was left in quite a state. We did our best and spent the day cleaning and making sure it was ready for the inspection. Once we had finished we took photos of everything, just in case it was messed up again overnight then we’d have evidence. The Inspection day came and thankfully the flat was left in the same state as we’d left it the night before. The landlord arrived and advised us that Steve and James had declined to come to the inspection. I handed over my set of keys and hoped that this was now all over with. A week later I received the inspection report and they had charged us with numerous infractions and charges including the need to repaint the whole flat, electrical tests and damages. The deposit would be used to cover some of this but there was an additional charge that would be split between myself and Steve as we were the ones on the tenancy agreement. After discussions with my family, they agreed to cover the additional charges in full including Steve’s costs so that we could get rid off the old flat and reduce the risk of further contact from Steve and James. We paid the charges and thought that was the end of it, but then heard from the old Landlord that Steve was contesting the inspection report and wanted his half of the deposit back. I explained that I had paid the full deposit in the first place and Steve didn’t pay any of the deposit and provided my bank statement to prove this. The old landlord was very grateful as they didn’t want it dragging out. That was the last contact I had with my old landlord and the old flat was now completely in my past.

The abuse though kept coming via text and email. Somehow the ex flatmates found out my new email address and as they had gotten into my social media accounts they were contacting my friends and family and telling lies and generally saying horrible things about me, I lost a lot of friends because of this. As I continued to unpack my things I found more damaged items. All my CD’s and some DVD’s had been scratched so badly they couldn’t be used – and some had been scratched with offensive writing on. Showing how petty they had become even my photo albums had been damaged and any photos that I had with them in had been removed. I couldn’t take the constant barrage of abuse and unwanted contact so finally I contacted and reported it to the Police.

I came home to the new flat, within a week of moving in, to find someone had tried to break in. They had snapped off a key in the lock and there were groove marks along the frame of the door as if someone had tried forcing there way in. I immediately call the police and an officer came and spoke to all my neighbours in my building, but nobody heard or saw anything. The next day when I arrived for work, I was pulled into a formal disciplinary meeting. My manager had received an email from Steve making complaints against me. After a thorough investigation it was found I had done nothing wrong and it was just Steve trying to cause more trouble. I reported this to the Police, as it wasn’t just my home life they were making miserable – they were trying to affect my career. I was asked to make a formal statement to the police, so went down to the local police station and they took my statement and I showed them all the evidence I had kept. It was now being dealt with as a domestic abuse case and I had a specific officer assigned to me. A couple of days later, I met with the police officer who was handling my case and they had gone and spoken to both Steve and James. I was told that I wouldn’t have anymore contact from them and if I did to report it to them and they would deal with it accordingly.

Thankfully all the communication did stop – however, a couple of months later I started getting things through the post for stuff I did not sign up to – such as catalogue companies and the like. After getting them to investigate where the sign up was done and on a hunch gave Steve and James’s full names and the relevant timescales, they agreed that I hadn’t signed up and they cancelled the accounts and removed me off there systems. After a year or two I would get random emails from Steve, saying he and James had split up, blaming it all on James and that he hadn’t done anything and wanted to meet me for a drink for a chat. I always politely declined and advised if he keeps contacting me I’ll report it to the Police again. In the end I just stopped replying and blocked the email addresses. There is nothing that Steve or James can say that will ever let me forgive or forget what has happened.

In 2013 I suffered a complete mental and nervous breakdown. Although it was precipitated by other events in my life, I dont doubt that the stress and anxiety of all the abuse over the previous years that Steve and James had caused had a part to play in my breakdown. Through the course of my recovery, I was diagnosed with Autism Spectrum Disorder and this might explain why I hadn’t spoken up and why I allowed myself to be used and abused in the way I had. In 2022 I finally managed to pay off the loan that I took out in 2004 and lifted myself out of debt. Its now 2023 and I have rebuilt a new life for myself. As I said at the start, I’m not recounting these events in order to shame or punish anyone, but its a way of opening up and letting go of the past. I dont need to relive these events in my mind over and over as its all here in black and white.

A footnote in my past, in my life. And here’s to looking to future.

Mikey

Christmas 2020

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HAPPY CHRISTMAS

Well what a year 2020 has been, a Global pandemic which saw countries and people placed in Lock-down. I Haven’t been able to visit or see any of my family since January 2020 and would normally travel to spend Christmas with them. This year like many other people we have decided the risk is too great and so wont be together this Christmas. Will be the longest time in 37 years that we have been apart. Despite the distance between us we will celebrate and enjoy Christmas with Joy and Happiness and we’ll all look forward to the new year 2021 and hope that families and friends will be able to meet up again.

So no matter where in the world you are or who your spending the Holiday season with. Just know that your not alone.

Happy Christmas From Mikey

Lockdown

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Well 2 weeks before the UK went into lockdown I was at hospital having a camera inserted into my nose and had other tests. The diagnosis was Allergic Rhinitis, 2 months on I’m still waiting for test results to find out what it is I’m allergic too. However it could just be my fibromyalgia and the body is attacking itself. I have tried to chase up the results but the GP, hospital and NHS are understandably busy dealing the pandemic.

I’ve been in self isolation for almost a month now as all my medical conditions been I’m classed as a vulnerable person during this crisis. But the only trouble is all of the symptoms I get overlap with covid-19 symptoms, so I don’t know what is what. However one thing I can say is I feel terrible: physically, mentally and emotionally.

Social distancing is a very interesting thing at the moment. I’ve never been very social and social situations were very difficult for me with my autism but I’m finding that now everyone is social distancing its making parts of my life easier. I don’t have to try and make small talk or remember the correct social etiquette. I think neurotypical people (non Autism people) will find this a lot more challenging. For years I’ve been told to try and be more social to speak up and fight my corner, but now those rules have gone out the window and everyone is experiencing the world as a person who is introverted and doesn’t like social events.

As for the lockdown and having to stay inside, well that’s just been my normal life for 7 years. The outside world with my Autism, anxiety, depression and PTSD has been a scary place and its been better and easier for me to lock myself away and now the whole Country is doing it. People seem to forget that lockdown is their usual way of life. Hopefully now that the whole country has experienced it peoples attitudes will change, wishful thinking I know.

I struggle with recognising that I need help and struggle with asking for help. I have reached out to Bury Council, the government and mutual aid charities near me to get help with shopping and collecting medicines, so far everyone has said no. Even though I’m classed as vulnerable and self isolating people are refusing me help because I’m not elderly. I agree elderly people need and should get help but so should others. Everyone is trying to save lives and protect the NHS but by ignoring vulnerable people isn’t right, we have a lot of complicated medical conditions and would rather manage at home then put more strain on the health service. But at the time. Without help or coordination we are forced out to do shopping and collecting medications to make sure we stay alive and healthy, putting ourselves at risk and that could tax the health service later on. I struggle to ask for help, I’m very independent and I don’t want to cause trouble or make someone’s lives more difficult by asking them to do things. Even more so now that people are risking their lives to do it.

STAY HOME – PROTECT THE NHS – SAVE LIVES

Accepting I’m different

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Throughout my life, I’ve struggled to fit in. things people find easy, I dont and came up with numerous ways to fit it or ways to accomplish things. Despite this I’ve always been told I’m doing things wrong or someone would say “I wouldn’t have done it that way.” Nothing i have done has been good enough and honestly throughout my life I’ve felt a failure.

However since my autism diagnosis, my life and outlook on things has changed dramatically. Its difficult for me to accept that I’m different and that I am in fact disabled. Everything i have been through in my life and the way i react to things or the way i think, is different to everyone else. Thats a hard thing to get my head around. It wasn’t until my diagnosis that certain aspects of my life began to click in place. I’ve started to realise some of my reactions and feelings are autistic traits.

Because I’ve tried to fit in to the world around me and to be accepted by people I have learned to mask things. (Masking is a process in which an individual changes or “masks” their natural personality to conform to social pressures, abuse, and/or harassment). My counsellors and Doctor have agreed that masking is wrong and I should stop trying to conform to things and be my true self. This is where things are getting really difficult. I’m trying to be myself and just do things that i enjoy, however for me to do that i’m starting to ‘let go’ / forgetting to do things that would be classed as ‘normal.’ e.g. Energy bills or managing money that i really dont understand it and so am kind of ignoring it and hoping for the best, which i know isn’t the best plan. There are so many things that i still have to try to conform to and things that i have to do. Which goes against being myself and trying to bring down the ‘masks’ I’ve created.

How do i be myself and restart my life as an autistic adult if i cant let go of the image of a ‘normal’ adult i pretended to be. It really is a minefield and that’s before I even get onto my other health and learning Conditions.

Hospital Disaster

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Over the past couple of months i have been having numerous hospital appointments and then had an operation. It was to remove 4 teeth (3 wisdom teeth and one other tooth).

It seemed to be one disaster after another. Although the operation was successful it was not without drama, trauma or stress. They really did not seem to have a handle on how to deal with Autism at all and has left me having nightmares about it.

It all really started with a mix up with hospitals. I went to Fairfield Hospital to see the surgeon and have xrays done. I then had a further appointment for MRSA screening as part of the pre-op before the operation, I turned up at Fairfield hospital to be told the actual appointment was at North Manchester hospital. So this test was rearranged and i went to North Manchester Hospital, to have the test done and was given an operation date and letter saying the Operation would be done at Fairfield Hospital. It really didn’t help that all the letters came from Fairfield hospital, including the one for the appointment at North Manchester Hospital. All these appointments happened within weeks. Not very helpful and quite an information overload.

I received 2 letters in the post regarding the day of my Operation. The First one said I had to be at the hospital at 12 noon for an afternoon operation and the second letter arrived on saturday afternoon before my operation on the Tuesday (monday was a bank holiday) to say I had to be there at 7:30am for a morning operation. Due to the Time of arrival and the bank holiday i couldnt contact the booking department to find which time i was meant to be there for, so we took the 2nd letter as the most up to date and went to the hospital for a morning surgery.

I wasn’t allowed anything to eat or drink from 11pm the night before. We arrived at The hospital and checked in at 6:45am. The little waiting room was very hot and stuffy. The receptionist behind the desk was eating her Breakfast and drinking cups of tea in front of patients who were nil by mouth which I thought was quite mean. I was already quite nervous and anxious before arriving at hospital and at around 11am nothing had happened and was still sat in the waiting room. I went up to the receptionist to find out if they had forgotten about me and after she looked into it i was told i was not due to have my operation until later in the afternoon and apologised that no one had told me. During the time we had been there we had seen other people being called in and some already coming back from their operations. At around 11:45am i was on the verge of having a major panic attack as i had been trying to hold it all together since the night before. After discussing it with my partner i decided that i was no longer in a fit state and really didn’t want to have the operation that day, I had reached my limit. I wanted to cancel it and rearrange for another less stressful day. So i went to speak with the nurses and asked to cancel and rearrange, i was asked why and i had explained i had autism i’ve been waiting for almost 5 hours with nothing happening, hadn’t eaten or drunk anything in 12 hours and was starting to have a major panic attack. The nurses really didn’t want me to cancel and tried everything to get me to stay and said they would ask the surgeon if i could go next instead of having to wait until later. I really did feel rail-roaded into having the surgery done.

The surgeon agreed to change his schedule and I was then next in line for surgery. I met with nurse’s, the anaesthetist and the surgeon. I was asked multiple times about my current conditions and medications, which I explained about my autism, PTSD, anxiety and depression. I was then taken down to the operating theatre around 12:40pm.

While I was in theatre my partner was sat waiting in the waiting room, he received a phone call from North Manchester Hospital asking him where he is and could he come into hospital as there was a problem with my surgery. He explained he was sat in the waiting room of the day surgery unit, so they said they’d be down to collect him. Around 10 minutes later he gets a call back as they can’t find him and he explained he was by the reception desk of the day unit at Fairfield hospital. For some reason they were looking for him at North Manchester Hospital. The switchboard was at north Manchester so they had assumed the surgery was being done there.

Once the confusion had been cleared up, A staff nurse came and collected him and took him into the operating theatre where I was and he was horrified to see me being forcibly held down and me “fighting” to escape. There was nurses holding my arms and legs down and others trying to keep the oxygen mask over my face. He explained that i had autism and they needed to stop as they were doing to much at once. He also explained about my medication and my anxiety, depression and what i had been through that morning. They hadn’t been told any of this, despite me confirming it numerous times that day. I remember bits of this as I started to come round during the operation. Apparently I had a bad reaction to the anesthetic due to the medication I was on. So they had to bring me round during the operation in order to give me a different type of anesthetic. My partner was told verbally what anesthetic I had a bad reaction to and was told that in future operations I should not be given it, however this was written down.

The operation which should have only been half an hour turned into a 3 hour one, once done I was taken back to the day unit. Instead of being put onto the ward to recover with the other patients. I was put into my own room in order to come round in my own time. Everything seemed to change at that point, myself and partner were treated with ‘kid gloves’ lots of tea and extra biscuits. Everything done at my pace. They seemed to be falling over themselves to be helpful, it seemed like everyone knew something had gone wrong and were trying to make up for it.

After hours recovering I was discharged and sent home. It was days later, when the swelling had gone down that I could see there was a stitch in one of the wounds and a week later another stitch came out.

No one had told me I had stitches put in (how many, how long they’d last etc), I wasn’t told by any hospital staff what had happened in theatre or what anesthetic I need to avoid (hopefully this will be on medical notes). As I will need to make people aware of this in future. Now feeling left very let down, traumatized and have loss quite a bit of trust in hospital.

Throughout my treatment from my dentist, to the consultant, the pre op appointments and the morning of the surgery. I told everyone I was autistic and had other health issues, but it all seemed to be ignored on the day.

There are however 2 silver linings throughout this ordeal that I can take comfort in. Firstly, the painful and troublesome teeth have been removed and secondly, how my confidence has grown (through the help of life coaching) in order to stand up and say I wanted to cancel and rebook, despite being forced into it, previously I would never have stood up for myself in that way.

So all in all a disastrous hospital trip with NHS staff needing a lot more autism recognition and training. Being overwhelmed with information and dates at different hospitals and lasting nightmares about being held down and ignored however I will seek treatment for it and will give feed back to the hospital as no-one should have to endure what I was subjected to. It would be difficult for a normal person to deal with let alone someone on the autism spectrum.

Routines

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After getting my formal diagnosis of Autism in 2018 I was referred for ‘Life Coaching’ in order to help with my confidence and to be able to have more understanding on how i see the world and to try and make sense of how my view is different to other peoples and to gain more understanding of how people react to it.

The Life coaching will be done in 10 sessions every 2 weeks. I’ve only had my first session and The life coaching is trying to get me set up on a proper routine. I’m finding it very tough and gruelling, to be honest I’m struggling. Everything is timed and planned out the day before, from appointments to bedtime and what time to wake up, right down to set times for brushing my teeth. Other than making me more tired and stressed out i’m not seeing any benefit or real reason for it.

Having autism, fibromyalgia and chronic fatigue syndrome (plus a number of other physical and mental health issues) I have always been told to do things at my own pace and when i’m ready. Trying to force myself to do things at set times is just making me depressed and when i dont complete a set task at the set time. I feel guilty and feel I’ve let not only myself down but the life coach and others to. I don’t know if i’m putting to much pressure on myself or its my autism and i’m being overwhelmed. Either way i’m struggling. Maybe its too much too soon.

Hopefully the next session will be able to tweak things and help me out about. I know the life coach said it would be hard and i’m willing to try and do it, but my body is protesting. Doesn’t help that i’m still doing Physiotherapy at the same time.

No gain without pain

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Been a long time since i did an update, mainly to be honest because I have been very overwhelmed. Have had appointments and hospital trips weekly.

Fibromyalgia – Been going to Fairfield general Hospital to their physiotherapy department to take part in ‘Pain Management Sessions’ has left me extremely sore and in lots of pain in places i didn’t know could hurt! I have been doing lots of different exercises, it is hoped that because my body is always in pain by doing these exercises it will help train my nerves and mind to recognise that I’m not doing any damage and there is no reason for them to send pain messages. it does seem very counter productive. Fibromyalgia causes widespread pain and doing exercise makes it worse, but hopefully it’ll improve my symptoms and pain levels in the long run, but right now i’d just settle for a single day without pain. I would say I used to be very active, but lately just doing the Washing up is killing me. all these exercises dont help with my Chronic Fatigue syndrome either. I feel like a zombie!

Autism – I have finally received my referral for ‘life coaching’ it is very early days but it looks promising although will be quite hard. It’s a 4 month programme and will hopefully improve my confidence and me learn new life skills that others take for granted. This will hopefully help me deal with situations and my autism without having a meltdown.

Mental Health – All the medical professionals that are trying to help me all agree that i still have Issues with the events of 2013 and that i did to work through that trauma. I Was referred to Bury Healthy minds for more counselling and Cognitive Behaviour Therapy, however i have had to stop this while i go through the Life Coaching with the Autism team. As its felt that working on 2 types of therapy will not be helpful and could end up being confusing.

Surgery – I’m due to have surgery to have 3 wisdom teeth taken out. This will be in hospital under anaesthetic. Not looking forward to it, but will be good once done as it will stop some if not all of the dental pain i have and will hopefully stop any more infections.

So everythings a bit all over the place at the moment. It is affecting my depression and getting overwhelming but i’m trying to struggle through. Some days are better than others.

Understanding – At last

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After years of complaining of pain and numerous trips to Hospital. I was referred to see the Rheumatology department at North Manchester Hospital. Saw a very nice Doctor who really did know what he was doing and asked alot of in depth questions. It was amazing for someone to actually understand what I had been living with and going through for years.

Was poked, prodded and examined.

The Doctor has diagnosed me with the following:

Fibromyalgia
Sleep Disorder
Chronic Fatigue
Irritable bowel syndrome (IBS)

He advised that all of these along with my Autism, Hyper-mobility and
psychological issues (Anxiety & Depression) are all intertwined.

They are Chronic conditions with no known cure. So is now a process of how to manage the symptoms.

I am being referred to Pain Clinic, Physiotherapy, Hydrotherapy and
Psychiatry. He will be writing to my GP to request that I go on sleeping
tablets and to increase the medication dosage that I’m currently on as
well. They took some blood for testing to cover the bases, but will not need to go back and see that department again.

There was a student Doctor observing my appointment and had apparently never seen someone whose joints where so bendy. So least I’m helping future generations of Doctor’s learn if nothing else!

It really is a genuine relief to get these conditions diagnosed and have someone to listen and understand. I had only been expecting a single diagnosis of Fibromyalgia, so to come away with 4 different conditions was not only a complete shock but also a validation of the fact that I really am not very well. I had thought that all the symptoms I had were normal and the pain I experience is what everyone else feels. It wasn’t until I had been diagnosed with Autism that I have begun to realise that it wasn’t normal.

Its strange having Autism and not feeling, experiencing and expressing myself as other people would. Its very hard to explain, what is normal for me is not normal for the wider community and vice versa.

I have tried to express myself and tried to tell people that things were ‘not quite right’ for years but I have either been bullied, fobbed off, taken advantage of or just plainly ignored. So to prevent myself from having to experience those again I just shut down, closed myself off and told people what they wanted to hear. However since my Autism diagnosis I have been learning to try and express myself better and this has led to these new conditions to be diagnosed to join my long list of other health issues. Now it’s a case of learning how to manage the symptoms and conditions.

Over the years I have learned to mask and hide things and to just keep pushing through them. Now that the health professionals are telling me that yes – what I am feeling and experiencing is real, and not to try and hide it or bottle it up. I worry that people will think that I’m making things out to be worse than they are because they weren’t an issue before.

It’s a lot not only for me to take in, but for my friends and family. At least we have some understanding of what is going on.

Another Diagnosis – Fibromyalgia

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Well as anyone who knows me, will know that i’m not very well. Doctors seem to agree as I’ve received another diagnosis of Fibromyalgia.

The main symptoms of fibromyalgia are outlined below.

 Widespread pain
If you have fibromyalgia, one of the main symptoms is likely to be widespread pain. This may be felt throughout your body, but could be worse in particular areas, such as your back or neck. The pain is likely to be continuous, although it may be better or more severe at different times.The pain could feel like:

  • an ache
  • a burning sensation
  • a sharp, stabbing pain
 Extreme sensitivity
Fibromyalgia can make you extremely sensitive to pain all over your body, and you may find that even the slightest touch is painful. If you hurt yourself – such as stubbing your toe – the pain may continue for much longer than it normally would.
 Stiffness
Fibromyalgia can make you feel stiff. The stiffness may be most severe when you’ve been in the same position for a long period of time – for example, when you first wake up in the morning.It can also cause your muscles to spasm, which is when they contract (squeeze) tightly and painfully.Fatigue

Fibromyalgia can cause fatigue (extreme tiredness). This can range from a mild, tired feeling to the exhaustion often experienced during a flu-like illness.Severe fatigue may come on suddenly and can drain you of all your energy. If this happens, you may feel too tired to do anything at all.

 Poor sleep quality
Fibromyalgia can affect your sleep. You may often wake up tired, even when you’ve had plenty of sleep. This is because the condition can sometimes prevent you from sleeping deeply enough to refresh you properly.You may hear this described as “non-restorative sleep”.

 Cognitive problems (‘fibro-fog’)
Cognitive problems are issues related to mental processes, such as thinking and learning. If you have fibromyalgia, you may have:

  • trouble remembering and learning new things
  • problems with attention and concentration
  • slowed or confused speech
 Headaches
If fibromyalgia has caused you to experience pain and stiffness in your neck and shoulders, you may also have frequent headaches.These can vary from being mild headaches to severe migraines, and could also involve other symptoms, such as nausea (feeling sick).

 Irritable bowel syndrome (IBS)
Some people with fibromyalgia also develop irritable bowel syndrome (IBS).IBS is a common digestive condition that causes pain and bloating in your stomach. It can also lead to constipation or diarrhoea.

 Other symptoms
Other symptoms that people with fibromyalgia sometimes experience include:

  • dizziness and clumsiness
  • feeling too hot or too cold – this is because you’re not able to regulate your body temperature properly
  • restless legs syndrome (an overwhelming urge to move your legs)
  • tingling, numbness, prickling or burning sensations in your hands and feet (pins and needles, also known as paraesthesia)
  • anxiety
  • depression

Depression

In some cases, having the condition can lead to depression. This is because fibromyalgia can be difficult to deal with, and low levels of certain hormones associated with the condition can make you prone to developing depression.

I think my doctors now dreads asking for my medical notes. lol

Changes?….

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I’m rediscovering the world and myself since my autism diagnosis. Learning a lot about Autism (still a lot to learn) and finding that lots of my little quirks are often ‘Symptoms’ of Autism. I think i made need to change the name of my blog, as its no longer a road to recovery. I had thought that I had nervous breakdown in 2013 and have been trying to get back to how i was before then. Since my diagnosis I’ve discovered that how i was being and reacting to a lot of things in life was me ‘masking’ or ‘camouflaging’.

I’ve always known that I see the world differently to others and previously when i have said things I’ve either been ridiculed or put down. So haven’t said anything for years and copied how other people react, but now I need to learn myself and the world all over again and to accept and allow myself to feel the way I do.

So Maybe it I should rename my blog “Rediscovering the world” or “Me and Autism”, “My autism journey”.

I should have my final autism assessment by July 2018. Which will make it a year and a half to fully, pin down the challenges and hardships I face, hopefully making things a bit easier.

 

Autism Spectrum Disorder

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I haven’t posted in a while cause to be honest i’m scared, confused and very lost. I’m still coming to terms with being diagnosed with Autism Spectrum Disorder (ASD) and what it means and what effects it’ll have on my life.

I’ve always felt that i’m a different and that something has been ‘wrong’ with me since childhood. But when ever I’ve approached the subject or spoken my mind I’ve been told that i’m being silly or just making things up. I’ve always been the weird one and the outcast, and I’ve tried to cope by pretending and trying to fit in and to ignore how I’ve felt and thought. However now that I’ve been diagnosed with ASD, i’m trying to accept how i feel and what i think is ok and to try and express that. But it makes me wonder who I am, as i have been pretending for a long time.

Most people who are diagnosed with as ASD are diagnosed when they are children. I’m 34 and have found that there is not a lot of help or support for autistic adults out there. majority of self help guides and support groups are for children and their parents. I Just dont know where to turn. There is a lot of other medical conditions which are linked with ASD and I have numerous symptoms and alarm bells are ringing, but when trying to express this to medical professionals they dont seem to care or understand. From everything i’m reading and learning it seems i’ll soon have a medical degree myself. lol

All of this is making my Anxiety and Depression worse.

Autism Diagnosis

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Since my nervous breakdown in 2013, I have been visiting the GP, going to counselling and even had a number of unexpected trips to Hospital. They seem to be finding more and more things wrong with me. First it was anxiety, depression and PTSD. Then they discovered I was partially deaf and classed as hard of hearing, requiring me to have 2 hearing aids fitted. During my numerous counselling sessions it was suggested more than once that I might autistic.

Last week I was officially diagnosed as having ASD (Autism Spectrum Disorder). I’m still trying to come to terms with it and what it all means. I am still awaiting the full report from the autism assessor and hopefully this will either answer some of my questions or put me in touch with people who can help answer them.

– Majority of Autistic people suffer from Anxiety and depression. So is how I’ve felt since 2013 part of my Autism Spectrum Disorder or are they in addition to it?

– Most autistic people are diagnosed when they are children, I’m in my mid thirties, apparently dyslexia is a common misdiagnosis of autism. I was diagnosed as dyslexic in 1998, so am I still dyslexic or has this been misdiagnosed?

– I have been reading and chatting to people who have been diagnosed with ASD later in life and they have said that their life changed and really began after their diagnosis. So will mine change and if so how?

– Are my physical disabilities part of ASD?

It is a big change and huge learning curve. For someone like me who isn’t always sure of his feelings to start with it’ll take time to adjust and time for it all to sink in. I’m relieved that they found something and it wasn’t me just going mad, but. at the same time I’m sad, scared and angry. Really is a jumble of all emotions. Apparently grief is an expected emotion after this diagnosis, but I’m not quite sure why, no one has died, I’m still the same person I was.

 

listed below are some things that are very familiar to me when I was looking through the autism website. I just thought everyone felt this way, didn’t realise it wasn’t normal.

Sight:
OVER-SENSITIVE
Has difficulty getting to sleep as sensitive to the light.

Sound:
UNDER-SENSITIVE
May only hear sounds in one ear, the other ear having only partial hearing or none at all.

OVER-SENSITIVE
Noise can be magnified and sounds become distorted and muddled.
Inability to cut out sounds – notably background noise, leading to difficulties concentrating.

Taste:
OVER-SENSITIVE
Certain textures cause discomfort

Touch:
UNDER-SENSITIVE
Has a high pain threshold.
Enjoys heavy objects (eg weighted blankets) on top of them.

OVER-SENSITIVE
Touch can be painful and uncomfortable – people may not like to be touched and this can affect their relationships with others.
Dislikes having anything on hands or feet.
Difficulties brushing and washing hair because head is sensitive.
May find many food textures uncomfortable.
Only tolerates certain types of clothing or textures.

Balance:
UNDER-SENSITIVE
A need to rock, swing or spin to get some sensory input.

OVER-SENSITIVE
Difficulties with activities like sport, where we need to control our movements.
Difficulties stopping quickly or during an activity.
Difficulties with activities where the head is not upright or feet are off the grou‏nd.

Asperger’s Syndrome

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During a counselling session last week the Counsellor has admitted  that he is only able to help so far and has identified a number of things. We have been looking at things in depth and using mood diary’s to help. But a lot of the underlying issues we found are ingrained in my mind and cannot be changed, which is causing issues. He thinks I will probably be Diagnosed with Asperger’s Syndrome and he thinks getting the diagnosis will help, in my understanding and will open up other treatments more geared to help me.

I will still be seeing my Counsellor a couple of more times to help with anxiety symptoms and coping mechanisms but wont be a complete fix. Have chased up the Autism assessment and waiting to find out how long the waiting list is.

 

What are the Symptoms of Asperger’s Syndrome?

Symptoms include

  • Difficulty maintaining eye contact
  • Difficulty managing social situations
  • Unable to respond appropriately in verbal interactions
  • Unable to decipher facial expressions or body language
  • Unable to show emotions, may seem emotionally robotic
  • May focus solely on their own needs
  • Focus in on specific subjects they are interested in. Usually the topic is very literal.
  • Resistant to change. May expect the same thing to occur day after day.

Conflicting Beliefs

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I’ve been continuing with my counselling and its been going quite well and we have been zeroing in on certain ideals/beliefs that i have grown up with and has been quite surprising in some of the “answers.”

I have always believed in the best of people, even if others have warned me about them or If I’ve heard something about their past, I can only see the good. Maybe they have changed, maybe it was just that once, or that it was the circumstances at the time. This has been my downfall numerous times.

I also expect to be treated badly by everyone, maybe this belief has just come from my past experiences, (abusive relationship, Bullying throughout school, disability discrimination, Homophobia), If i expect to be treated badly, then i can be prepared for it, if it doesn’t happen then that’s great. but this conflicts with seeing the good in everyone.

During counselling we established that I find that I unless I can do something to the same level as everyone else I feel that it is a failure. I do have disabilities both physical and mentally and I don’t believe personally that should affect how I preform. Everyone else can do, so would shouldn’t I? Yes it takes me a lot of extra work and is a lot harder for me to do things, but i don’t personally make allowances for it. If i do, then i find that i constantly have to prove myself, prove that i have difficulty, prove I have disabilities, prove that I have to work twice as hard and prove that I can do it. What some people find easy can be a very difficult and daunting challenge for me. Due to this I rarely find anything to be proud of or find something successful. Even if i did find something to be proud of, i don’t really show it as I think people will make fun or not see it as a particular accomplishment. So Physically and mentally, I know i’m not the same as everyone, but I Still hold myself to the same standards as everyone else.

So I can confirm my Mind is quite screwed up. It really is fighting itself in everything I do, as its trying to work out which belief is the right one. No wonder i suffer from Stress, Anxiety and Depression.

On-wards and upwards

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Taking a break works wonders. The start of September was particularly difficult, I was very depression and struggling with a number of things. I had also restarted counselling with Bury Healthy Minds.

Took a weeks break and headed to London to visit family and this coincided with a number of Transport events and open days. We had a Trip on London’s Mail Rail, Visited Brooklands Museum and the London Bus Museum, this was followed by visiting the London Transports Acton Depot Open day. And the week was rounded off with a spectacular look behind the scenes of London’s Charring Cross Tube station with Hidden London.

Concorde at Brooklands Museum:

London Bus Museum:

Acton Depot Open Day:

Charring Cross, Hidden London:

Saw almost every type of transport imaginal. Am a huge bus and train enthusiast and these really were very special moments that really did make my year! Could have spent hours or days exploring these places more. So much to see. Had a very positive impact and really need cheer me up and get me out of my depressive episode I was in before.

Am now back in Manchester and working with counselling to hopefully improve things. We’ve had 3 sessions so far and have delved right into thoughts, my past and my beliefs. Its quite amazing how intertwined everything is and even my counsellor is realising that focusing on one particular thing wont work or really help. So i’m doing numerous Mood Dairy’s to record what i’m thinking and feeling during the times between the sessions to see if anything stands out. Feeling very positive so far and think my current counsellor is actually starting to understand what life is like for me. On-wards and upwards…

Losing grip on reality

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I feel am losing my grip on reality. I just don’t seem to know what is real or what i have dreamed / made up / imagined. It’s a bizarre feeling. I seem to have lost the ability to put things in chronological order / timescale. Things that happened weeks ago seem like yesterday and things that happened today/yesterday seem to be from weeks ago. I don’t know if this is a coping mechanism or something else. Am getting confused with things that have actually happened and things that i have dreamt and imagined. I know i’m not losing my mind but my mind just seems to be a lot more jumbled than it normally is.

I Struggle with getting things done, always thinking I’ve got plenty of time to do it and then realising that i don’t. I’m stressed and worried because i feel like i have so much going on at the moment and in reality when sitting down and working it out, its not a lot 2 or 3 big things and there’s nothing i can do straight away its waiting for appointments or waiting for the correct time to arrive. When I was ‘well’ before my breakdown, i was working as well as coping with everything else and now i cant seem to 2 or 3 things. It is so depressing and humiliating. I know i’m unwell and not in great health but it just feels wrong and makes me feel guilty and makes me feel like a failure and i’m letting everyone and the world down. I didn’t ask to be Ill and don’t like asking for help, but know i’m struggling. It’s very difficult to ask for help as i don’t know what help is needed/required or what is available.

I’ve recently restarted counselling and this may be what has thrown me out of whack lately as we did talk about a number of different things in-depth. Its scary being scared of everything and talking about it as it really does make you think you, you are crazy.

On the flip side there has been some good things happening.

  • Restarted counselling, I know its small steps and its working on one problem at a time, but anything is better than just stopping and doing nothing.
  • Under going tests for Autism It’s not another thing I suffer from, but a solution or answer to why and how i react / think of things. And so far things are making a lot more sense in regards to this. Have only had one diagnosis session so far and the result was that i have autistic traits in all 4 areas.

Where to start?

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Argh! Don’t know where to start or what to do for the best. I have so many different issues both physically and mentally that need addressing. I have noticed however all these issues overlap and interact with one another. The way the mental health team and the GP work is to focus on one issue at a time. Which in theory would be a good idea, but by doing this its causing different issues to get worse or has unintended consequences.

I have just finished an ‘Anxiety group Workshop’ course of treatment. To be honest I think it made things worse than it did in actually helping. It was good to find out and hear from others that they were experiencing the same anxiety symptoms as I was (although for different reasons) so I learnt that I wasn’t alone and that I shouldn’t be so scared of the symptoms of anxiety. But it did show how bad and deep my depression was, we had an exercise where we had to challenge ‘negative thoughts’ and turn them into positive ones. For example I’m nervous of going out of my flat. “Something bad will happen if I do” so we had to change it into a positive thought “something good will happen if I go out” but I found that although I could make up something and change it into a positive I didn’t actually believe it and just made me more depressed.

Things that need to be sorted:

Depression – Have had depression for around 15 years, It comes and goes but is always there. I was in an abusive relation for 6 years, in a job that i was constantly bullied in for 10 years. A lot of people have taken advantage of me and my good nature, which makes trusting new people difficult. Have struggled with coming to terms with my sexuality, and struggled with my disabilities – Dyslexia, Hearing loss, musculoskeletal issues, mental health issues. and often depressed about money. Feeling low increases my anxieties. I have been suicidal and don’t want to fall back into that.

PTSD – Still getting flashbacks and nightmares of the events in 2013. This increases my anxiety and depression.

Anxiety – Because i’m anxious all the time and have physical symptoms (sweating) and panic attacks means I often don’t go out, makes me feel guilty and stops me from doing the things i used to enjoy and this makes me depressed.

Health – Due to musculoskeletal issues I’m constantly in pain, which makes my mood low, I tend not to go and get anxious that if i do go out i’ll be in pain or make it worse and i’m not in the right mental state to face surgery on it. I’m on 13 tablets a day, which i know is a lot and proves to me everyday that i’m unwell and increases my depression and my anxieties. I’m very conscious of my hearing aids and how people might react to it.

It’s only a brief description of the things i need sorting, because theirs lots more involved and i’m not comfortable sharing or bringing up everything at the moment, hopefully will give people an insight into how everything is interlocked and overlapping. So when your focusing on one single issue the other issues get worse, and its like taking one step forward and 2 steps back. GP wants to know how i want to move forward with my treatment and what i want to focus on, but i really don’t know as everything is connected. Nothing is worse than anything else, they are all as bad as each other. Ideally would need to work on all of them at the same time to slowly reduce the effects but the Health system doesn’t appear to be set up to accommodate that.