My Pain Story- Part One

I have had a very slight worry in the back of my mind for years that one day my posture issues would get a lot worse.  Having had previous issues with my posture in various ways I knew that it was only a matter of time before they would flare up again.  So I kept up my physiotherapy exercises for it even after my previous shoulder and back issues had died down.

Previously in my mid-twenties I had a frozen left shoulder that caused me some real problems for a couple of months or so.  Weekly physiotherapy including the use of an ultrasound machine used for massage helped a great deal, alongside doing daily exercises.  Since then I have been back to physiotherapy for shoulder and neck pain that I wanted to prevent from getting worse. 

However, the exercises only keep the problem at bay for so long before they flare up again.  Now I have major pain down most of my left side.  I have had minor twinges and aches most of my life, but last June was when I noticed things getting significantly worse again.  I was having more than my usual amount of sore hip muscle issues and the pain was a little different to just muscle weakness.   Then when my back became agonisingly painful on my usual walk home from town I knew that something was not right.    

So I booked an appointment with my GP.  She thought it could be the curve in my spine pushing on a nerve sending pain across my left side.  I was told to book with physiotherapy and to come back in if I felt I needed stronger pain medication than over the counter stuff.  Even booking with physiotherapy was easier said than done, with the self-referral system we have in our area, and when I did get an appointment they were so busy it was a wait of almost a month to actually see them.

Meanwhile my pain issues were getting worse.  Not only did my lower back and hip area hurt, but the pain was spreading.  Firstly down my leg to the ankle, then to my shoulder and neck and then my arm and even my left hand started to hurt.  The last straw was when my left hand became so weak I could no longer fully use it without pain.  This was the point I decided I needed stronger pain medication and went back to the doctor.  I was given Gabapentin tablets, which are specifically for nerve pain. 

I eventually had my physiotherapy appointment.  The physio agreed my posture is bad, but was unsure that I actually had scoliosis and was not sure that it was a nerve issue.  She referred me to orthopaedics since I had never actually seen them about my back and posture specifically before.  That meant more waiting for another appointment. 

I knew Gabapentin tablets take a few days to have much effect, but after nearly two weeks I still had no relief from them.  I decided the physiotherapist was probably right and it might not actually be a nerve issue, as the pills do not work on other types of pain.  I managed to get a phone appointment with a GP for different pain killers.  I ended up with prescription strength codeine based medication, which is helping my pain, although not as effectively as I would like.  I also worry slightly about being on them too long as they are an opioid and opioids are seen as quite dangerous to be left on long term. 

By the time I had my orthopaedic appointment it was September.  The orthopaedic specialist confirmed it is definitely not nerve pain and not scoliosis.  He suggested one of my issues could be tennis elbow, which to me sounded a bit odd as my elbow is one of the few places I do not have pain.  He seemed to think I have a series of different things which may be triggering each other.  He told me I have over reactive reflexes, but never told what, if anything, this could mean.  So after a thorough examination from both a physiotherapist and an orthopaedic specialist I was left with tennis elbow and over reacting reflexes, not really all that helpful.   

I was advised to attend the pain clinic.  However to do that I needed a GP referral, which meant waiting two and a half weeks.  What was even more frustrating was when I finally did hear from the pain clinic I had to ring them just to confirm I still wanted an appointment and to pick the hospital I wanted it at, then I was finally put on what I gather is a rather long waiting list to see them.  So I still do not have my appointment with them yet!

Then my right shoulder started to hurt.  I put this down to either sleeping on it badly or over compensating for the left, but the pain did not go away.  When it spread down the arm and to my right hand, with pain exactly like my left side I knew my pain was no longer isolated just to my left.  As frustrating as having a painful and weak left side was, now both sides are bad it makes daily functioning really tricky.  So far my right leg is pain free, and hopefully it will stay that way as my left leg has always been worse due to my hip issue and tends to be more sensitive.

Most recently I went back to physiotherapy as advised by the orthopaedic specialist.  I have been given some wrist and hand exercises to do to try to tackle my possible tennis elbow or whatever it is causing me pain in that area.  So now I do three lots of exercises that I have been given over the years for posture, leg strengthening and now hand and wrist.  If nothing else it could help to keep me functioning somewhat even if the pain is not lessoned.

I am pretty sure my posture issues stem from my hip issue causing me to walk with a limp and rather turned out gait for years and having spent a long time using walking aids in the past.  Perthes Disease might be described by experts as a childhood hip issue, but it has definitely affected more than just my hip and has left me with life-long issues.-

I am still waiting on my pain clinic appointment and will see my GP again next week.  It is all rather a tedious lot of waiting for appointments and so far not much progress, but we will see.  I will be coming back to this topic again when I have more to tell you.

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Autism is Varied

Autistic people share certain difficulties, but being autistic will affect them in different ways, Autism is a spectrum

Put a group of autistics together and they are bound to get along, WRONG!  The thing with autism is that it is so varied we can end up clashing.  One autistics need could be another autistics meltdown trigger.  For example some autistics needs peace and quiet, but at certain times too much silence can be bad for me, giving my OCD thoughts and anxiety a chance to take over.  I used to be part of an autism support group on Facebook.  It was fine for a couple of months, but people started disagreeing on various topics, getting more and more heated in debate.  In the end it led to arguments and people getting upset, so I left the group.  If autistics struggle to get along with other autistics, how an earth do we expect to get along with non-autistic people?

Actually I sometimes find non-autistic people easier to get along with.  They can be more willing to except difference and change, more able to understand that people’s opinions may differ from their own, less easily upset and stuck in their own way of doing things.  An autistic person may obsessively tell me about a hobby or interest to the point I am almost at meltdown and have to find an escape from them.   I find some non-autistic people very hard to get along with, but no more so than some autistics.  Autistic people like everyone else have personalities so we will not all get along.

The National Autistic Society in the UK campaign for more autism friendly services and shops.  The trouble is what is more autism friendly for one autistic may not be for another.  I do wish other people understood autism better and were more excepting of our needs and differences, but I feel the term ‘autism friendly’ can be misleading.  It assumes that all autistic people need the same changes, which is simply not true.  I would rather people just accept us as a bit different and that we may not fit the social model of ‘normal’ all the time.

The fact that autism is so varied can be an issue.  Instead we need to look at it more as an umbrella term rather than as one specific thing.  It is several conditions that have common characteristics.  There is a need for books and guides on the subject of autism to not stereotype or it could be a case of ‘oh, but the book says…’.  I tend to find the books written by autistics themselves are often better than those written by so called experts on the subject. 

I recommend The Girl with the Curly Hair Project as a good guide to what autism is like for a lot of people, especially females with Asperger Syndrome.     https://thegirlwiththecurlyhair.co.uk/

Perthes, Long-Term Effects

‘Perthes is a childhood disorder which affects the head of the femur (the ball of the ball and socket joint of the hip). In Perthes disease the blood supply to the growth plate of the bone at the end of the femur (called the epiphysis) becomes inadequate. As a result the bone softens and breaks down (a process called necrosis). Over several months the blood vessels regrow, and the blood supply returns to the ‘dead’ bone tissue. New bone tissue is then laid down and the femoral head regrows and remodels over several years. This is similar to how bone reforms and remodels after any ‘normal’ fracture or break to a bone, but takes longer,’

(https://www.perthes.org.uk/what-is-perthes-disease/)
As this quote says Perthes is a childhood condition that affects the hip in growth. However, I often come across adults talking in various social media groups as if they still have Perthes and some even swear blind they still do have it. Technically no one can have it as an adult, but you can have the after effects of having had it as a child. The after effects for me where Justas bad as the Perthes itself.


Not everyone who has Perthes will go on to have such bad after effects; some will have very little at all. It is said that the younger someone has Perthes the better the chances of a full recovery with less side effects, particularly those aged under five. I was diagnosed aged seven and my hip never seemed to grow back fully in the right shape or size.


Pain and hip replacement


I almost always had some kind of pain coming from my hip area, be it the hip itself or the weak muscles. The pain did not go away after the Perthes was said to have run its course due to the damaged state the hip was left in. Not all Perthes patients carry on having pain like I did; it depends on how well the hip grows back to its proper shape. In a lot of cases the ball of the hip does not reshape to fit the socket well, which can lead to a faltered ball, creating significant problems later.


It is said that patients who had Perthes are at higher risk than most of having osteoarthritis, one study of sixty people with Perthes put it as high as over fifty pecent and often at a younger age than normal. I was told I was developing the early stages of osteoarthritis in my early twenties. This eventually led to me using crutches on a daily basis as weight bearing on the hip became too painful. Then aged twenty-five I had a total hip replacement.

According to a fairly recent study ‘LCP patients had a significantly higher risk of THR surgery compared to sex- and age-matched control persons’ (https://online.boneandjoint.org.uk/doi/abs/10.1302/0301-620X.92BSUPP_IV.0920594c)

After my hip replacement I had a lot less pain from the hip area, but my muscles were very weak from lack of use over many years. Once I started doing more with the leg the muscles became sore. Pain after Perthes is very common in muscles suddenly being used more than they are used to. I have found physiotherapy very helpful for strengthening my muscles again.


Leg length issues and posture


Leg length discrepancy is common amongst those who had Perthes due to bone growth not being complete or loss of height due to flattening of the head. Also, some surgeries such as femoral varus osteotomy can contribute to leg length discrepancy, making it a now less preferred treatment for some surgeons.


I had a 1.5 cm difference in leg length before my hip replacement which caused me to limp. A long term limp is not good for your posture. I ended up having posture related issues. I had back pain off and on since about the age of eleven, nothing server, but early signs the way I walked was not good. Then in my late teens I started to get neck and shoulder problems which gradually got worse, till one day aged twenty-four I woke up with a frozen shoulder, which took weeks to get back to fully functioning again and still has twinges now and then.


Physiotherapy has helped a lot with my posture issues. Initially several sessions of massage using ultra sound with the physio gave me great relief, followed by doing the exercises she gave me every single day. I still do some of those exercises years later. The exercises prevent my posture issues from getting even worse and help a lot with the pain.


During my hip replacement my surgeon made sure to correct my leg length difference as much as possible, this has almost removed my limp entirely (apart from when my hip muscles are very sore).


Another thing that can be done is to have an orthopaedic lift fitted to your shoes or an insole used for less server discrepancies. An orthopaedic specialist can advise on this.


It is important to make sure any walking aids such as sticks and crutches are the correct height as this can also be a contributing factor for posture issues. I feel that years of using a cane did not help my back, leaning to one side.


Fitness and fatigue


Due to pain when using my hip much before my replacement I had a poor level of fitness. When you struggle to even walk well it can make exercise tricky. Swimming was about the only proper exercise I found that was not too painful. It made recovery from my replacement surgery slower as not only were my leg muscles weak, but I had become used to not walking very far at all. I had to build up my fitness levels again. Physiotherapy, aqua fit classes and walking more helped with this.


Another reason I was so unfit was the fact that I was tired most of the time. Constant pain is exhausting. Pain can affect your sleep, making it hard to get comfortable and fall asleep. I found when very tired my hip hurt more, making it even harder to get to sleep. I was also on some strong pain medication which probably contributed to how tired I was feeling. Fatigue made getting much exercise and doing much at all hard work.


Surgery outcomes


According to my research it does not seem to make much difference if Perthes patients have surgery as a child or not long term. Recent studies are now showing that surgery seems to be a short term solution and that in fact some surgeries such as osteotomies can make later surgeries trickier. In a lot of cases it is hard to know if the hip would have grown back and recovered anyway given time as it sometimes does in those without any surgery.
http://www.harboursidephysiotherapy.co.uk/Injuries-Conditions/Hip/Research-Articles/Hip-Replacement-for-Adults-who-had-Perthes/a~4365/article.html

AARGH!

Autistic Meltdowns

I suddenly start to yell at the people around me, getting increasingly loud.  I yell abuse, threats and swear.  I stamp my feet, bash the table and cry, sobbing loudly.  I look like a toddler having a tantrum, except that I am a full grown adult.

A tantrum is voluntary, used as a tool to manipulate and get your own way.  However I have no control at this point, there is no planned purpose or manipulation intended.  My emotions are at over load and crashing down like an avalanche.  I am having an autistic meltdown.

This describes my meltdowns at their worst, when I totally loose it.  Not all my meltdowns are at that level.  They vary in intensity and in how long they last.

What causes me to have a meltdown is not always easy to pinpoint.  It can be caused by a sudden change in plans or lack of knowing what the plans are.  If plans are made and I am expected to be part of those plans, but I am not informed in exact detail as to what those plans are in advance, it can cause me to get confused and upset.  Any kind of confusing situation can cause a meltdown if it continues being confusing for a significant length of time.  Frustrating situations such as people continuously not listening to me or things going wrong a lot can be a trigger.  Another trigger can be interrupting one of my OCD routines, when I am already somewhat stressed.  Fatigue can be a cause, when I am too tired to control myself any more.  Major disappointment has been a trigger in the past.  Sometimes a meltdown can be me having made such an effort to fit into a situation for hours that I eventually explode.  I will have kept back opinions, been polite to people who frustrate me and basically have been in a situation I find difficult for so long that in the end a meltdown is like a cathartic release.  Putting pressure on me to do something I have clearly already said no to is a big trigger and can cause me to feel like you do not respect me, no means no!

Often a meltdown may not be caused by one specific thing, but by a series of things that can build up over time.  It can take hours or days for the triggers to build up sometimes and one last thing can be the final straw.  I can sometimes work out why I had a meltdown afterwards, but often struggle to know at the time and sometimes never figure it out.  Asking me at the time why I am having a meltdown is not a good idea, often it just makes my meltdown worse, making me frustrated that I do not know why I am having it.

Sometimes I can feel myself getting increasingly annoyed and know I need to get away from the situation.  If I need to leave a room or walk away let me, it will be better for everyone.  However I can’t always feel it coming and it will happen like it or not. 

When I was younger I had more frequent meltdowns that often lasted longer than they do now.  I had them a lot as a teenager in school.  I think I was frustrated with life then, feeling trapped in a school that did not really meet my needs.  Being undiagnosed I was not getting the right support.     Also I am sure puberty played a part.

I still have meltdowns, but less often than I used to.  I feel maturity has helped a lot having had time for my hormones to settle down and time for me to get used to life as an adult.  I also feel my independence has helped me.  Since l got my own flat I feel more stable and able to manage my own life.  I am in charge of what do and when, making me less confused and frustrated.  I am also better at dealing with certain kinds of stressful situations.

When I do have a meltdown now I find I they do not last as long as they used to.  I can calm myself down more quickly and rationalise with myself somewhat about the situation.  Being angry at people who can do nothing to help is daft and will not get me anywhere.

Yoga breathing can help slightly to prevent a meltdown getting worse, but it depends on the exact situation.  It helps me to focus my mind on the breathing and think calmer thoughts. 

I hate that I still have meltdowns at all.  It makes me come across as immature and selfish.  It gives the wrong impression about me to other people, like I am just some angry, hate filled bitch.  Telling me to grow up or to stop being so over sensitive is unhelpful, if I could totally stop having meltdowns I would.

Phrases that almost always annoy me in some way

Reading Facebook comments I started to notice there are several phrases that almost always manage to get on my nervous and make me feel like that person is either a moron or not very nice.  I started to think about other expressions I also really dislike and why I do not like them so much.  This is what I came up with.

Cheer up love, it might never happen

What if ‘it’ already did happen?  What if that is my normal expression?  This phrase is often said to women by men, the kind of men who expect women to be smiley and bubbly all the time, which is almost impossible to be constantly.  My thinking face often gets this comment by total strangers passing me in the street, which I think is actually quite rude.  They do not know me or what I am going through at that moment.

Man up

To show emotions or feelings as a man is often seen as week or unmanly, but that is just a stereotype and it in no way makes you less of a man.   As a woman I find it more attractive when a man is able to show some emotions, it makes them not seems just cold, but whole and human.  Stereotyping men as always strong and tough means a lot of men do not admit when they need help and they can end up in serious situations with their mental health.

Just get over it

You cannot tell someone to just stop their own feelings.  To say it to someone can make them feel unheard and trivialised, as if you are dismissing how they feel.  It can make someone sound selfish and uncaring.  This is especially true in regards to mental health, a clinically depressed person cannot just get over it and I cannot just get over my OCD rituals that easily. 

I’m a bit OCD

OCD is not just being neat and arranging your music collection in alphabetical order, it is a serious mental health condition that can cause someone a great deal of stress and affect their ability to live their everyday life as they would wish.  You cannot be just a little bit OCD, you either meet the criteria to be diagnosed with it by a mental health professional or you do not.  The use of this phrase trivialises OCD and can prevent those really suffering from seeking help.

But you don’t look disabled

Some people seem to assume disabled people all use wheelchairs or at least some kind of walking aid and when they do not, act surprised when someone tells them they are disabled.  If someone considers their condition disables them, they are disabled, even if that condition does not require a walking aid.  Some people use this phrase when someone uses a disabled parking badge or disabled toilet but does not conform to their stereotype of disabled.  It is no one’s business why someone uses these facilities and people should not judge on appearances alone. 

What do you do?

In other words, how do you earn a living?  This can be an awkward question when you live on benefits and have not had paying work in some years.  When I tell people I sometimes get the rude eye role of ‘oh, you are one those lazy people who sponge off society’ or sometimes they just assume it must be because I am special needs, which, while that might sort of be partly true, they then often get rather patronising.  When some people ask I do not mind so much, but when someone I have only just met asks me or someone who really does not need to know, I can find it rather annoying.  It can help to say I volunteer, although some people do not respect volunteering and think it is an excuse to stay on benefits and not do ‘proper’ work.   

Young people today show no respect

This is a stupid expression since all age groups have some disrespectful people among them.  I have   seen elderly people disrespect the young just as much as I have seen the young disrespect them.  In fact even this expression is disrespectful as it makes out all the young are the same.  Respect is a two way street, are the elderly respecting the young in the first place? 

Special snowflakes

Young people often get called snowflakes now whenever they challenge an older person’s point of view or bring them up on their offensive behaviour such as racist jokes or use of derogatory expressions.  A special snowflake is used to describe a millennial that is seen as over sensitive, thinking the world revolves around them and that just moan about everything, but do not really care.  The current issue they are moaning about will not last; it will melt away and be replaced by a new one like a snowflake.  This is used to dismiss any younger person’s point of view by some and does not help a generation of young people already struggling to find their place in the world.  As Shelly Haslam-Ormerod says in online magazine The Conversation, ‘flippant stereotyping of a generation as weak based on their mental well-being contradicts efforts to reduce mental health stigma’.  As a millennial myself I find the term not only offensive, but used as a lazy argument or when an older person has clearly got no other defense for what they have said or done.

That’s so gay

Younger people often seem to use this expression now to mean something is bad, rubbish or stupid.  I am not sure how this came about, but it makes me uncomfortable.  It gives the word gay negative associations and I am sure the gay community does not need more negativity.       

Charity begins at home

Look after your own family and direct circle first, or in other words unless I have to come into direct contact with you regularly, I will not be offering you any help.  It is used as an excuse to not give any money or time to others by mostly quite selfish people.  I cannot see why I cannot care about both my family and friends and other wider causes at the same time, but this expression seems to be saying this is impossible to do, which is simply not true. 

I’m not racist, but…

Excuse me whilst I am actually racist.  If you feel you need to justify what you are about to say with this expression then do not say it or you simply are racist.  A truly non racist person would never need to make that statement in the first place.  

My experiences of therapy

I have tried various kinds of therapy for my mental health over many years, some though the NHS and some I have found for myself.  These are my experiences of the therapies I have tried.

Cogitative Behavioural Therapy (CBT)

‘CBT is based on the concept that your thoughts, feelings, physical sensations and actions are interconnected, and that negative thoughts and feelings can trap you in a vicious cycle’, (www.nhs.uk/conditions/cognitive-behavioural-therapy-cbt/). 

It aims to break down problems into smaller more manageable parts.  You are shown how to change negative patterns to improve the way you feel.  Unlike other talking therapies it focuses on current problems rather than issues from your past.  It is most commonly used to treat anxiety and depression; hence I have had it for my OCD, which is a type of anxiety disorder.  

However it was not that well explained to me when I had it and seemed based on the idea that I could just stop and walk away from my OCD rituals, which if I could do that I would not be needing therapy in the first place.  The NHS website says each session should last thirty to sixty minuets, but after my initial session most of them did not last that long.  I was encouraged to take a lot of my therapy sessions by phone, which seemed to not be a very effective form of therapy for me. 

CBT does not address winder problems such as other mental health issues that could be impacting on your anxiety or depression.  I have since found out that CBT is often ineffective for people with autism, such as me, as it does not address the autistic side of things.  All CBT seemed to do for me was to get rid of one OCD ritual for it to be replaced with another.  I can see how this might help if you have a dangerous ritual, but otherwise seems a bit unhelpful.  I can see CBT might work for some who have not got more complex issues, but it was not for me.  However this seems to be the only therapy a lot of people can ever access on the NHS as if it is a panacea that will cure all mental health issues. 

Mindfulness

Mindfulness is a type of meditation that focuses on being present in the moment without judging anything. ‘A typical meditation consists of focusing your full attention on your breath as it flows in and out of your body. Focusing on each breath in this way allows you to observe your thoughts as they arise in your mind and, little by little, to let go of struggling with them. You come to realise that thoughts come and go of their own accord; that you are not your thoughts. You can watch as they appear in your mind, seemingly from thin air, and watch again as they disappear’, (http://franticworld.com/what-is-mindfulness/)

Mindfulness is about noticing what your body and mind are telling you, and then being able to react more calmly to things.  One exercise is a mindful body scan where you focus your attention slowly through the body one part at a time.  Tensing up and relaxing muscles as you go so you notice the difference between the two states.

Mindfulness can help problems such as anxiety, depression and stress.  Some mindfulness exercises are often used as part of other therapies and workshops.  I have found some of the exercises helpful as part of laughter yoga and drama therapy.  I find focusing on my breathing sometimes helps me to clear my mind and relax.  However I feel that the word mindfulness has been corrupted as a marketing term to sell stuff from colouring books to health food snacks, and I refuse to buy anything labelled as such.  

Counseling

Counseling encourages you to talk about your feelings and emotions with a trained therapist.  They can help you clarify issues, explore your options, develop strategies and increase self-awareness.  I had counseling at university and later through my GP surgery.  I found it slightly helpful at university as she gave me some strategies I could use, but the other counseling I had achieved nothing other than me talking about my issues and going round in circles.    

Anger Management

Anger management aims to help you understand why you are angry and find a healthier way to express yourself.  CBT is often used in anger management to help deal with negative thought patterns.

I had some anger management as a teenager, whilst the relaxation part helped a little bit; I feel I was not mature enough yet to put the techniques into practise properly.  I was also depressed off and on at the time which may have not helped me to make the most of it. 

Group Therapy

Group therapy is a form of psychotherapy in which one or more therapists treat a group of clients at the same time.  Some uses CBT or mindfulness.  Group therapy tends to be focused on one particular issue such as addiction meetings, a shared illness or mental health condition or a traumatic experience you may have in common.  Some groups use skills training as therapy such as art, drama or music.  Group therapy has several advantages such as knowing you are not alone with the shared experiences and feelings, sharing ideas and information and hope when you see others recovering.

I had some group therapy in my early teens which used activities and discussions to help us.  Whilst I feel I did benefit slightly from it, I feel that it was hard to make the most of it due to some of the group not really wanting to be there.  I also feel that some of the group could have been a bad influence on me had I been more vulnerable, trying to persuade me during the breaks to take up smoking for example.

Laughter Yoga

Laughter yoga is a group therapy based on the idea that laughter is healthy, both for the mind and body.  Exercises are done to create laughter, starting with forced laughter; it usually turns into real laughter.  It uses chanting, clapping and games to encourage a sense of playfulness.  It often uses elements of drama therapy and visualisation techniques.  Yogic breathing is done in-between laughter exercises, relaxing the mind and body.  At the end of each session laughter meditation is done using some elements of mindfulness. 

I first encountered laughter yoga about three years ago and then last summer I started attending a new weekly session run by a friend of mine in the town where I live.  It helps me to relax and de-stress.  It is not hard work and I find it great fun.  I can understand it might not be for everyone, you need to be fairly comfortable with letting yourself go in front of others, (my drama background maybe helpful in this).  However I highly recommend giving it a try as it is my favourite form of therapy I have tried.

Drama Therapy

Theatre techniques are used to help personal growth and mental well-being.  Drama therapy is often used in schools, prisons, hospitals and in work places to promote team building and healthy working relationships.  It involves role play, voice work, movement and storytelling.  It can help people explore personal and social issues.  It helps some people learn to express themselves better.  As part of my drama studies over many years I have done a few workshops using drama as therapy to explore various topics. I think workshops have great potential to help a lot of people, but it has to not be forced on people as some could be very uncomfortable with it and not everyone is able to do things like this in front of a group.  

Self Help Books and Online

Often I have found that self-help is more effective.  I have read a few books on autism and mental health and used various online message boards and chat rooms.  Also I have watched some documentaries on TV about my issues.  I have often learnt more about how to help myself from these things than any professional therapy I have had because I can pick and choose what elements to read and watch and do it in my own time.  I also feel less pressure to recover or learn a technique in a set time period.  Plus the ideas are not restricted to the NHS guidelines which often appear very strict and limiting.

Hobbies can also be a kind of therapy, for me writing is like that.  Writing my thoughts down is helpful, so I keep a daily diary.  Writing this blog often feels as satisfying as therapy.  Sharing my issues, anxieties and feelings often helps me.  A lot of people seem to find art therapeutic.   

I have found therapy is a very personal experience and what works for one person, maybe less effective for another, even with same diagnosis.  It is worth trying different therapies or even retrying one at different stages of your life.  What may have not helped as a teenager, maybe more effective when you are more mature and not forced into it by your parents.  Do not just rely on what a doctor can refer you for, but do your own research into what is on offer in your local area outside of official medical channels.  There are other kinds of therapy that I know less about that maybe worth looking into.  Sometimes people need a combination of therapy and medication which is perfectly valid, it does not mean therapy has failed if you also need medication.  Therapy also requires will power and wanting to learn from it, being ready to get well, forcing it will not work.

Being on benefits is not a life style choice

I am fed up with the ignorant and rude comments made about people on benefits.  I would like to say what it is really like to live on benefits.

  • When people describe it as ‘choosing to live off the government’, I would like to point out for most people it was not a choice.  I did not sit in school and think; when I grow up I want to live on benefits.  I had dreams and ambitions the same as most young people do.
  • Being on benefits does not automatically make me a lazy person.  I volunteer for three local good causes and try to be an active part of my local community.
  • I am not on befits because I am stupid.  I have various qualifications including a degree.
  • When people say ‘just get a job’ they have no idea how long and hard I tried to get a job.  I spent years applying for work and went to lots of interviews.  I tried really hard at every interview to get the job. 
  • I did not ‘turn down perfectly OK work as beneath me’.  I had an interview at McDonalds, they were the ones to turn me down and I would have willingly taken the job.   
  • Some people on benefits are simply too ill or disabled to work.  They are not lazy; they just know their limitations and know that they would actually be unable to fulfill most job roles to any satisfactory level. 
  • Not everyone on benefits is an addict on illegal drugs or an alcoholic.  I have never taken illegal substances and am not a heavy drinker.  Hardly anyone I know on benefits is an addict.
  • Getting benefits is not as easy as some people think it is.  Claim forms are tricky to even fill in.  Firstly you need internet access these days to get most kinds of benefits which for some people is not always easy.  Secondly the forms are often long and confusing.  If you cannot read or write well they are difficult.  Yes you can get help to fill in a claim from charities, but you often have to be able to get to them and have limited time with them.  You often need proof of certain things which can be hard to get sometimes.  Then they keep changing the rules on who can claim what and how, making it even more confusing.
  • Some people make out immigrants often come here just to live of benefits and can claim them almost as soon as they enter the country.  This is simply not the case as the Full Fact charity explain ‘Most non-EU nationals who are subject to immigration control are not allowed access to “public funds” (such as jobseekers’ allowance or tax credits), although they can use public services like the NHS and education.’  The rules on what immigrants can claim in benefits are complicated, and not as simple as turning up and filling in a form as this article explains https://fullfact.org/immigration/migration-and-welfare-benefits/  
  • Then there are sickness benefits.  On Employment and Support Allowance or Personal Independents Payments you have to have a medical assessment, which is not always easy, without someone with me I would have struggled to find the place it was held.  An awful lot of people fail these medicals, even those who are obviously very sick.  I failed my medical and had to appeal, which meant going to court.  Yes I had to go to an actual court, with a judge and a full on hearing.  This process can be scary, intimidating and somewhat embarrassing.  I had to listen to my support worker list the ways I failed at being an adult, which was not easy to hear, although I know she did it for the right reasons.  Not everyone even has support when they go through this process which must be really scary and I am not sure if I would another time as I no longer have a support worker.
  • I have had people say I should be working and not on sickness benefits because someone else they know who has the same condition as me is working.  Every disability and illness will affect the person with it differently to the next person.  Maybe if I only had that one condition I would be working, but like a lot of people I have a few different things which combine to make it harder.  Some might have had a lucky break finding an employer willing to hire someone disabled or sick, but not every employer is willing to deal with someone who may need more support and time off than the average employee. 
  • People who threaten those on sickness benefits with reporting them to the DWP as they seem perfectly fit and able to work need to mind their own business.  That person may not leave the house on a bad day, so you only see them on a good day when they are able to do more.  They may also only be going out as they simply have to and once they get home again may end up in bed for the next few hours recovering.  My mental health fluctuates and I do not always know if I am going to be able to get out the next day, so holding down a job full time would be very hard.  When people do not fit the stereotype idea of disabled it can result in being judged as a benefit cheat by others which is rarely the case.  
  • Being on benefits does not mean I should never have a night out or go and enjoy myself in some way.  Sick and disabled people can leave the house for more than just hospital appointments.  If I did not get out and socialise I would end up more ill physically and mentally, and then cost society more as a bigger drain on the NHS.  
  • The assumption can be that benefits should only pay for the bare essentials such as food and utility bills, and if I have anything more I must be getting far too much money.  Some people do only get benefits that cover the bare essentials, and sometimes not even that, hence the rise in food banks.  However I live alone and do not have any children so my day to day living costs can be kept quite minimal.  I am careful with money and so can afford to have some social outings and nights out now and then and can afford to have some nice things in my flat.  Besides, a lot of my nicer things are second hand from charity shops or things family no longer wanted, or gifts for birthdays or Christmas.  
  • Some people who judge others for being on benefits may be on benefits themselves but not realise it.  Things like Working Tax Credits, Cold Weather payments and even state pensions are technically a benefit.
  • The stigma of being on benefits is enough to put some people off claiming what they could and only doing so when totally desperate, by which point it might be they left it so long they have made their health worse or ended up in debt.  The nasty comments and societies attitude are putting some people at risk.

The demonising of those on benefits needs to stop.  I am sure a few do cheat the benefits system, but it is a teeny, tiny minority and most are just trying to survive.  Until you have lived on benefits for a while, try not to judge what you do not really know.  Bear in mind the phrase there but for the grace of God go you or I.  Most people are one accident or illness or job redundancy away from needing to claim them.