Hospital Disaster

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

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.

Understanding – At last

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

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?….

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

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

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

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

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

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

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?

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.

Darkness of Depression

I cant seem to win or move forward with my recovery. People keep telling me that i’m doing well and they have seen improvements but whats happening in my head/mind doesn’t agree. I seem to have so many problems that its always playing catch up, sort one thing out and another rears its head. If its not anxiety, its depression or PTSD or Physical issues, not forgetting financial troubles.

For the past 2 weeks I have been attending an anxiety group workshop. It’s been difficult on so many levels, this week in particular as we have been focusing on Negative thoughts. This just seems to be making my depression darker/deeper. Which in turn is causing anxiety as i don’t want to end up like i was at the beginning of 2014 when i was suicidal. The current focus of the anxiety workshop is focusing on negative thoughts and turning them into positive thoughts. I’m really struggling to find any positive thoughts that i believe though. Which is making me feel depressed. The medication i take for my anxiety and depression doesn’t allow me to feel anything, it reduces or blocks my emotions, which i have mentioned to the GP and she’s happy for that to continue as she doesn’t want me to be depressed or suicidal again. I currently take 200mg of Sertraline which is the maximum dose. So if i did go back to the GP for a medication review, it would mean changing the medication i was and trying to find one which works again, which isn’t the best idea, i think as that too could increase my anxiety or depression.

I hate feeling like this, i wish i could feel something else. Just don’t know where to turn. I’m in therapy, i’m on medication i’m doing everything i can but just seem to be getting worse.

Running on Empty

Feeling both physically and mentally drained. Its been a while since my last post, but this past month has been exhausting. I feel I’m just going through the motions.

I have completed my one on one counseling sessions with Bury Healthy Minds and am now on a waiting list for group anxiety therapy. Their will be 8 to 10 people in the group. Hopefully I will be able to cope with it and come out stronger than when I went in. During my one on one sessions with my counsellor she recommended that I had a blood test done by my GP and that I get referred for an Austism test ( GP agreed and just awaiting appointment). The results from the blood test came back and showed high levels of enzymes in the liver, so GP has referred me for an Ultrasound at the hospital.

Having an anxiety condition and suffering from depression I have difficulty waiting on things. Waiting on referrals or test results, gives time for my mind to race through the what ifs? Hopefully one day people won’t have to wait.

My counsellor, family and friends have all wanted me to reapply for PIP (Personal Independence Payment). I had been holding off on this as its so complicated and delves deep into thoughts and physical issues. I had already received and completed a medical questionnaire back in December for the DWP (department of works and pensions) and said I might be called for a health assessment. So wanted to get this out the way first. After 3 months I hadn’t heard anything so applied for the PIP.

My worst nightmare came true when I received both the PIP form and a letter asking for me to attend the health assessment, arrived on the same day. I’m so scared, its my illnesses and me being judged and vetted. I understand the need for them, but wish their where less intrusive ways, and better questions than “So why haven’t you killed yourself yet?” Being asked. I know in my mind its a standard question and why they ask it, but makes me feel insignificant, unwanted and makes me feel a burden and wasting peoples time.

I didn’t choose to have physical illnesses and didn’t choose to have mental illnesses but they way I have been treated wether intentionally or not, makes it feel like its my fault. Which then makes the depression deepen and the anxiety worse. I’m sure I’m not the only one to feel like this but really is a poor way of handling things.

My GP has changed and increased my pain medication, is a lot better than the last one but doesn’t completely rid me of pain. As anyone who’s been in pain for a long time can understand it too leaves you feeling exhausted.

I really did think I was getting better at the start of the year but the past 2 months have shown me that although there might have been some improvement there is a long and hard road to recovery to go. That is indeed if I can recover. I know I won’t ever be the same again, but hopefully I will be able to wake up in the morning with enthusiasm and have a pain free day followed by restful nights sleep eventually.

Anxiety is Building Up

Anxiety is building up and can feel i’m struggling / fighting off a panic attack. I’ve had a lovely few days with my parents who came to visit and i’m quite proud of myself i pushed myself a lot and survived big crowds and lots of decision making. Even though it was family i am very socially tired. Its kind of hard to explain, but when you’ve been active and been in a high anxious state for a while, you need a number of days to relax and chill out to get your anxiety and stress levels down. Something that i think has definitely improved compared to a couple of years ago, but does leave you feeling both mentally and physically drained.

I’m very worried/scared/anxious about getting the new Hearing aids. Have had a hearing aid for my right ear for just over a year now. And now I will be getting one for the left ear as well. After getting my first hearing aid, i realized how much i had been missing and felt so guilty and angry at myself for not realizing it earlier. I don’t know If having 2 hearing aids will make the alot of difference or not to what i can hear, hopefully will, but nervous about it all the same. Then there’s the interaction with the hearing aids and the TV, Telephone and mobile phone. Will i then need adaptations to use these? (TV Loop System, Special hearing aid compatible phones). Its a lot of unknowns and i know there’s nothing i can do about it until i get the hearing aids fitted, but i’m still panicking over it anyway. There’s a part of me that’s exciting about it, i know how much a difference my first hearing made.

Then as we go into April, benefits are reviewed and changed. Monthly payments for bills (Gas, Elec, Water) Have been changed as well. I wont know whats happening or whats going out and what if anything i’ll be left with after. I hate talking money and fiances and really dislike change. Again I know there’s nothing i can do right here and now, but i’m panicking about it.

I So which there was a simple switch to turn off my emotions, I really do hate feeling this way and still feel so very guilty that I’m mentally unwell. I always expect the worst, that way its a surprise if things are better than imagined, (Will need to talk about this to my counselor and see if we can do anything to work on it, it might come down to confidence issues again).

I Have looked into a number of disability pages and grants and to be honest its all very confusing and don’t really know where to start. Most of them you need an assessment or need to contact the charity/company directly, but when your scared of everything and really don’t like meeting people or talking on the telephone it leaves you a bit lost.

Hearing Aids – Update

Had my audiology care transferred from Bolton Hospital to Bury Audiology. As this is a lot easier and closer for me to get to, making it quicker to get replacement batteries and to have the hearing aids re-tubed.

Bury Audiology had to do another hearing test today, which confirmed the results that I had last year at Bolton Hospital, however there was a decrease in my hearing on my left ear. Audiologist says that is normal as each test it might go up and down and is within the expected range.

She does however feel I would be better having hearing aids for both ears. So in 2 weeks time going back to have them fitted. They are the new ‘Wireless/bluetooth’ hearing aids, so they can ‘talk’ to each other and pick up the best sounds.

Will be another big change, but will take it in my stride. Who knew a bang to the head could do so much unexpected damage. Certainly didn’t expect to have to wear 2 hearing aids before my 34th Birthday!

Am not entirely sure how I feel about it, as I don’t like change, but trying to think about it positively. The retest results were a confirmation for me really, proving it wasn’t a one off. Hopefully my hearing will be a lot better in future and the fact it will be easier to get to the Audiology department, is really good. Saves time and travel costs. All in all a positive day.

Invisible Disabilities

I suffer from a number of Invisible Disabilities including Anxiety, Depression, PTSD, being hard of hearing and having musculoskeletal disorders. On a good day people would never know, but there are times when some help is needed.

I’m very conscious of my disabilities and don’t like to let it show it. Probably stems from the stigma around mental health and people with disabilities and also my own feelings of not letting my disabilities affect my life. Everyone else can do it/things so why cant I. I’m sometimes my hardest critic. I don’t like to complain that i’m in pain, or saying I don’t feeling right, because that’s all I’ve ever known, just assumed that’s how everyone is. however through my counselling I’m starting to come to terms with things and starting to see things in a different light.

I Have seen that Transport for London is rolling out a campaign so people with hidden disabilities can wear a badge which says “Please offer me a Seat” BBC news Article I think this is a really good and useful idea. The only down side is that its only for London. I Sometimes struggle to stand for long periods and when travelling on public transport it isn’t always a smooth ride, as you are jostled about (no matter how good the driver), for me this can be very comfortable as my body moves one way or the other, the pressure on my knees and my muscles increases and decreases something I cant prepare for it and can cause more pain. I don’t like to attract attention and wouldn’t have the confidence to ask someone for a seat, even if they are sat in a ‘priority seat’ or a disabled seat. Cause like me they might have invisible disabilities themselves. So a badge would be a good idea. When I have had to rely on crutches to get about people have been more than willing to help me and offer seats, but i don’t always require crutches and being a 34 year old man people wouldn’t think that i’d be disabled.

With more awareness of invisible disabilities and illnesses the Metro News website did a great article of “Why are people with an invisible illnesses so scared to ask for a seat on public transport?” link to article here

So I’ve decided to take a very small step and order myself one of these:

16mm Round, Disabled Lapel Pin Badge

Invisible Disabilities are hidden, and not something to be proud of or to show off. But people wont know how to treat you if they are not aware. So a small disabled badge on my clothes, might not change anything, but some observant people might see it and may offer me a seat or help. Cant hurt to try?

Truthfully, I am ashamed that i’m disabled and that i’m a different to everyone else. But with counselling I’m realizing “Its OK to be Me” and I have to accept that I am disabled and shouldn’t be ashamed of it or ashamed of asking for help. I don’t think it’ll make a huge difference but even any small difference has to be worth it?

Time to Talk Day 2017

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About Time to Talk Day

 Conversations about mental health change lives.

At the moment, too many people with mental health problems are made to feel isolated, ashamed and worthless by other people’s reactions.But talking about mental health doesn’t need to be difficult. It can be as simple as making time to have a cup of tea or go for a walk, and listening to someone talk about how they feel.

Being open about mental health and ready to listen can make a positive difference to someone’s life.

“It’s #timetotalk because if you say something, you realise how many people around you haven’t, and needed to”

This is what Time to Talk Day is all about – giving us all the chance to talk and listen about mental health.

Whatever the hour, every conversation, every text, every share means more people are reached and more lives are changed.

To find out more click here

It’s OK to be Me

It's ok to be differnt..

Well I’ve had 2 sessions of counselling so far in my current round of treatment. A number of things have come up that i’m currently working through.

I’ve got to encourage myself and teach myself “Its OK to be Me”

I’m a very sensitive person and take almost everything to heart, during counselling we worked out that rather than being myself. I’ve tried to please everyone and change who i am to fit in with other peoples perceptions of how i should be. This isn’t helpful or healthy. This is a very difficult post to write as it covers some of my most sensitive vulnerabilities, so apologies if i ramble on.

Appearance

This is a big one, I have never been comfortable with my appearance for numerous reasons. My hair when it grows long starts to curl and as a child i was teased a lot about it. Didn’t matter if i tried to gel it or style it, it always ended up curling. Always been told people would love to have curly hair, but for me I hate it. So much so now that its just easier and less stressful to shave it all off and have a skinhead. My clothes and style have also been an issue, what i find comfortable or stylish the majority of people wouldn’t be seen dead in it. This did results in sometimes being called names and some clothes were never worn again because of it. I have three very large scars on my knee after having a full knee reconstruction in 2011. I feel humiliated and ashamed that they are there and tend not to show them off. So Don’t wear shorts and always have my legs covered up. Nothings has happened or be said to me about my scars, but when i have gone out in shorts (very rare) I always feel that people are starring and talking behind my back about it. My Weight and body shape is always a concern for me. My weight tends to fluctuate depending on my health, and again I’m just not comfortable in myself.

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 Asking for Help

I don’t like asking for help, it makes me feel humiliated and ashamed. I Feel its a sign of failure asking for help or accepting help. Having numerous physical, mental and learning difficulties, i often have to ask for help in my life. It upsets me that i see other people who are able to do things without help, wish I didn’t need help, but i know i do.

Health

I’m not clumsy, i’m not accident prone, but if anything can happen it will to me. I broke my leg rolling over in bed. I Was hit by a truck while walking on the pavement. I Just seem to go from one medical disaster to another. It affects my life so much, from social activities to work. It is so embarrassing letting my friends and family know that I’ve been injured or am unwell yet again. It has become a running joke “Only You.” Having both long term physical issues and mental issues, symptoms tend to get crossed and confused. After a nasty fall in which i fractured my skull, i lost my hearing in my right ear. But i didn’t know until 3 years later after a different test for dizzy spells showed it. So i really don’t know what is physical or mental anymore.

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Dyslexia

I Have always had issues with my reading and writing from Primary school to now. It means i’m not as quick as everyone else and do need extra help in almost everything. A lot of people don’t understand Dyslexia and don’t understand that each dyslexic person has unique challenges, there isn’t a fix or and aid that is suitable for everyone. A lot of people see Dyslexia as an excuse and that your just lazy or cant be bothered. But believe me I’m not. I try so hard, I feel sometimes i work much harder than others but get the same results and that extra work is never praised. Unfortunately its a disability that people try to hide and find ways to avoid it.

Tiredness

Since 2013 i have felt extremely exhausted both physically and exhausted. I struggle to get a good nights sleep and also with all the symptoms like Panic attacks, anxiety, burping fits, sweating fits my body is working overtime to keep up. I have dark circles and bags under my eyes, which must make me look awful. I do try and push myself to keep awake and to get certain things done. But this runs me down and leaves me more exhausted. Taking naps during the day doesn’t really help, as still so much to do.

Again apologies if i Rambled, but hopefully, friends and family might understand a bit better, if they know how i feel and think inside. I’ve got to come to terms with all of these and just say “It’s OK to be Me”

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A Positive Start to 2017

Had a difficult but good chat with my new counselor this morning during my telephone assessment. She really did listen and wasn’t just focused on the events of 2013 but my life as a whole.

She agreed that I need to talk things through, rather than have CBT therapy to fix my symptoms, as CBT doesn’t get to the root causes of my issues. As I tend to bottle things up we will be doing Psycho-dynamic Therapy.

(The aim of psycho-dynamic therapy is to bring the unconscious mind into consciousness – helping individuals to unravel, experiences and understand their true, deep-rooted feelings in order to resolve them). Wont be quick fix, we are talking 6 months plus.

But feeling positive and a lot of what she said to me, made sense and I Start the face to face sessions next week.