A Short Take On The Opioid Crisis #ChronicPain

So yesterday’s STRONG pain meds have really helped my back and loosened off the upset spasming muscles which is great!

But the side effects SUCK!

Insomnia kept me up till around 2am and today I’ve got intense stomach cramps and bloating!

But I think I’ve now established there is not going to be a bowel explosion so it’s safe to leave home!

With the opioid crisis in America constantly gaining momentum I find myself wondering why anyone would choose to abuse these medications when they have such awful side effects. What I’ve described for me is one of the drugs with the ‘most manageable’ side effects the pain team and I could find furthermore yesterday I took one dose but split it in half and took each half hours apart… results urinary retention, nausea, bloating, cramps, insomnia and agitation and that was a low dose.

In America (and some would argue this is starting to happen in the UK) people are having to live with constant chronic unbearable pain because of a culture that treats them as addicts and drug seekers but here’s the thing…

I don’t think I know anyone with chronic pain that does not have to endure side effects as a result of taking opioid medications – truth is every time we take a dose of pain meds we are weighing up if the side effects are worth it!

We are not addicts, drug seeking or looking for attention.

We are trying to live the best life we can getting as much out of life as possible before the list of things we are unable to do grows longer. We don’t have terminal diagnosis but we do live our lives under a time pressure knowing our bodies are slowly giving out. We have to make the most of the times we are well and functioning and you know what sometimes that means we have to take opioids.

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Wheely Interesting Thoughts

So I don’t write much these days, I don’t have the time or energy and I kind of feel like I don’t have much to write about that wouldn’t be either self indulgent or read like a medical textbook! However its been over a year now since I became a part-time wheelchair user and got my electric Wheelchair Buzz and I’ve been thinking for a few weeks it would be good to put some thoughts down on paper, being a visually impaired electric wheelchair user and a guide dog owner in the UK is still a very rare thing so I kind of want to share in an attempt to help others.

The first run down of this will be some general thoughts and observations and then I intend to do some bullet point lists because everybody loves a good list.

The boring bit

Buzz is an Invcare Fox and I chose to have him in blue, he is on a lease from the Motorbility Scheme meaning I pay for him. A substantial amount of my weekly benefit pays for Buzz each week I also had to pay an upfront deposit and pay for necessary adaptations. I chose the Fox because of its ability to break down and fold to fit in a car, it was the most rugged and easily transportable chair I could find.

But wait your blind?

Yer I was terrified! I knew this was something I had to do to keep my independence and mobility but in reality I was very anxious about the whole thing. The thought of injuring another person or my Guide Dog Ollie terrified me and I mean terrified me! my first tentative sessions of driving Buzz I was on full alert using all my senses even though I had sighted people with me who were supportive encouraging and telling me I was a natural. From this test drive I went on to learn to use a long cane from Buzz

Learning to use a cane from a wheelchair

For me the first step was learning to use a cane with my left hand, I’m right-handed and had always struggled to hold and use my cane properly with my left hand. it felt alien at first but after looking at the way I grip the cane and some practice it became more natural. during this time I aimed to do extra cane practice whilst walking to get used to using the cane I learned though doing this that oh boy did I have a weak left wrist! The sweeping motion is exactly the same only the angle is obviously a bit different and you need a longer long cane. Initially going in a straight line is really difficult because you have to get used to one wrist making the arc for your cane and the other driving your chair. Sometimes the chair driving hand tries to copy your cane hand and you move from side to side unintentionally – I was reassured everyone does it. In my initial lessons I felt like I would never get the hang of it and then add in holding Ollie on the lead controlling her and I thought this is impossible!

by far the hardest part is that your brain has to focus on two or three things at once it takes a huge amount of concentration to get the cane skills down correctly to keep you safe and drive the powerchair. It is hard work, so next time you see me making it look effortless remember that it isn’t!

Having a good scanning technique is incredibly important if you are using a wheelchair a slip of a curb or down a step could result in flipping the chair with you in it and that would not end well.

Once I had mastered the local area the next step was to try to get on the bus again I was terrified but probably not for the reasons you might think.

As a new part-time wheelchair user I was really worried about the reaction of other people on the bus and the bus drivers – yes i was worried about what people where thinking about me. I was also concerned about the dreaded reverse round the corner and all the poles on the bus to get into the wheelchair space… there is a lot to bump into! My first attempt at getting on and off the bus it was raining and the bus was leaning on a camber towards the pavement it was an out of service bus and there was no pressure but it did not fill me with confidence. the combination of wet and sloping meant that every time I tried to get off the bus my wheelchair slid and I had very little control I thought if its going to be like this everytime I wont be getting the bus very often. Thankfully its really not like that all the time and after more practice and then introducing Ollie to the idea we now travel by bus regularly in Buzz.

The results of all that training

This is the best bit even when I am really poorly I can now get Ollie out for a walk or get to the hospital or my GP. I can now take ollie for a free run independently without the help of another person which has been so good for both of us. I can enjoy walking along the shore and stopping to watch the world go by and take pictures. I can take ollie for really long walks and go to events and carnivals without constantly looking for somewhere to sit down. At times when im fatigued I can still go out and enjoy life without pushing my body beyond its limits.

My wheelchair means I can still be me!

And with that I will sign off for now but there is more to come on this topic

New year new you – NO!

Now there’s a phrase that’s branded about a lot at this time of year I have no idea who first coined the phrase but I hate it… I shall explain why and start by being a little pedantic!

First off lets get this straight it is impossible to create a new you at new year or any other time. Until science evolves to the point where we can clone humans this is fundamentally impossible. Yea bits of us can replaced – I have the cornea of a very kind hearted individual who agreed to be an organ and tissue donor upon their passing.

Here’s my next issue God created you PERFECT! Whatever quirks or traits you have where planned by God. You are a beautiful creation the idea of ditching all that beauty and perfection from God to create a new you just does not compute in my brain. God loves you infinitely the way you are and created you to be you and no one else. 

Then there is the issue of chronic illness for people like me there is no cure (or hope of a cure) my body is the body I was born with and no amount of diet changes or exercise will make that body function normally. 

That’s just a tiny taste of why The phrase grates on me so much!

So new year new you can do one!

#DWP & #ATOS at it again please read! – #disability #ESA & #ATOS

I just read an article that has hugely saddened me, please keep reading and follow the link to get the full story.

A blind woman has been made seriously physically ill by ATOS and the DWP working in a way that totally disregards the Equality Act.

Having just read the facts of what happened I am so stunned that I really don’t know what to say.

The matter boils down to one of what’s sometimes called a print disability. The term print disability can be used to describe anyone who is unable or would struggle to read standard print. It’s an umbrella term and can be used to describe conditions such as total blindness, dyslexia and intellectual disabilities.

In this case the lady in question uses Braille or audio instead of standard print and ATOS & DWP are unable to produce this.

They then told her that she would have to find someone to fill out the form for her.

The stress of this landed her in hospital.

As I said at the beginning this saddens me you might think that’s a strange reaction, maybe it is but for me it’s personal.

As I’ve mentioned before my mum is almost totally blind her way of dealing with written correspondence is Braille.

My mum requested the same form as the woman in this story in Braille and got the response at the other end of the phone that said ‘I’m not sure if we do Braille but we should I will try and get it for you’.

The form the arrived in standard print with a deadline to have it completed and the threat that missing that deadline will result in loss of benefits.

My mum is lucky she got help from my dad and a local charity but for thousands of other people this is not the case.

I have also had help to fill out the form in question. I’ve also had the stress of trying to get it done in time for the deadline bearing in mind I get one hour of support a week!

What Is Hypermobility Syndrome?

This article really sums up my experince of joint Hypermobility, its written by the fantastic people at the Hypermobility Syndrome Association (HMSA).

Below is a brief quote from the article that neatly sums up what hypermobility is.

However some hypermobile people can injure their joints, and their ligaments, tendons and other ‘soft tissues’ within and around a joint. This is because the joints twist or over extend easily, may partially dislocate (or ‘sublux’), or in a few cases may actually dislocate. These injuries may cause immediate pain and sometimes also lead to longer-term pain.

The majority of people recover from an injury though this may be slower than normal. Some hypermobile people, however, either recover only partly or continue to repeatedly injure various parts of their body. This is one presentation of JHS.

These problems can interfere with daily activities, schooling, work etc. The pain associated with this can become widespread and persistent and might initially be diagnosed as or confused with another condition called Fibromyalgia.

As you may have seen if you follow me on twitter I dislocated my thumb on Friday evening. I did this doing something simple that would cause no problem for most people – tearing off a piece of duct tape!

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Former Archdeacon of Wells, Dick Ackworth, denounces unfair ‘benefits test’ – read why and sign his petition. #ukmh #MentalHealth

My own ‘medical’ was an absolute farce!

My assessor was provided with evidence from all my consultants but still when it came to my visual acuity test I said what I could see and my assessor said ” now try really hard”. As if if I put enough effort in I wouldn’t be blind!

My mum is also going through an ESA appeal as they found her fit for work when she quite clearly isn’t!

These tests cause nothing but stress and are carried out in a way that is often demeaning and causes distress.

They are not fit for purpose.

Laughing at mental illness – good news for Russell Howard

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Russell Howards Good News 3

I really enjoy radio and TV comedy and comedy clubs. As I tweeted a couple of weeks ago:

“I love laughing. And this comedy series with @RussellHoward always ends with an uplifting story.”

My tweet included a link to the BBC Three show Russell Howard’s Good News. This show, now in its eighth series, is written by Howard and is a light hearted upbeat sample of the previous week’s news stories. The show includes lots of humorous video clips and newspaper headlines, a mystery guest with a whimsical skill which Howard samples on stage, and ends with an unashamedly cheesy story. The show’s material is tested in front of an audience on Sunday, filmed on Tuesday then the show airs on Thursday. It’s the channel’s most successful entertainment show ever.

Last Thursday, to warm people up for the new series that started tonight, Howard’s 2011 stage show Right Here…

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New non-emergency health phone number to launch

Please see: BBC News – New non-emergency health phone number to launch.

Now my first question here is do we really need one?

NHS direct has come under a lot of flak for taking doctors and nurses out of hospitals and putting them in call centres – They also have to take action for the worst case senario when someone calls them which often leads to people being Ambulanced to hospital when they don’t neccessicarly need it.

I recently had the experience of being involved in an accident one evening, I should have gone to Hospital, a walk in centre (well at the time more hop in) would have been ideal but NO!

My local hospital with a walk in centre closes its doors at 9pm minor accidents and injuries do not happen in Gosport after this time.

This makes the nearest hospital with any form of A&E style care more then 10 miles away according to Google maps the journey would take around 45minutes in a car – I shudder to think about the cost of that in a taxi.

As it happened I was totally unable to get any treatment after my accident, the next morning I decided the pain of walking was not worth the 5 minutes down the road to the local hop in centre  so didn’t bother, had it been open at the time of my accident I would have defiantly sought medical attention.

So what would we all rather  – A new phone number managed in a call centre with lots of nice forms and paperwork and computer systems that break OR Hospitals actually being open, with enough nurses and Doctors and HCA’s and cleaners and receptionists and the right equipment when you need it?

Mind and Soul : 16 things not to say

Please take a look at the site I got this from its a real gold mine for Christian friendly mental health information… Not that nay MH info sights are not Christian friendly…ah… You get what I mean and its LATE!

Mind and Soul : 16 things not to say.

Things not to say


Yes, these have all been said! Yes, actually to people’s faces! In BOLD: What you said. Then: What the person heard!

Just give it to God!
One quick prayer and it’s all over, sorted, done and dusted!

Have you tried praying?
Just a thought, maybe you haven’t thought about it yet, you know even though you’ve been a Christian for 15 years?

Pull yourself together
You need a stiff talking to and someone needs to tell you

We all feel like that sometimes but you have to snap out of it
You know you’re not suffering anything else that no-one else doesn’t feel now and then so why can’t you just snap out of it like everyone else does?

Are you reading your bible?
I know you’ve been a Christian for 15 years and you use to preach, but maybe you’ve forgotten that when you are so ill and you cannot rationalise, you’re seeing things and hearing things, you can’t make sense of your words and anything or anyone around you, you’re visions blurred and your head feels like it’s going to explode, you can just pick up your bible and claim a scripture! It’s great isn’t it, as simple as ABC

I’m not getting into the boat with you – you’re full of self pity
No, I’m not even going to listen to anything you say as that would mean that I’m getting in the boat with you and agreeing with what you are saying and that would mean that I’ll be helping you simmer in your self pity and I don’t want to be classed as a negative person like you

Just fight it!
Just refuse to feel like that in the name of Jesus, refuse it, rebuke it, don’t receive it?

I’d never allow myself to get in that state
Sorry but what’s happened to you, will never happen to me, I’m fit, healthy and loving life, no way will what’s happened to you happen to me!

You’re looking really well
You look like there’s nothing wrong with you, in fact I think you’re making it all up, cause to me, you look like everyone else

It’s your own fault
I was reading Job the other day, what sin is in your life that you haven’t confessed and dealt with yet?

There’s no such thing as depression, you’re just feeling sorry for yourself
What is all this poppycock about depression and illness? you need to get a grip and stop pretending you are ill

You’re a hypochondriac
Honestly, there’s people out there who are really ill, I think you enjoy it

Shouting at someone
I need to disciple you, discipline you and put you right, now STOP IT

Why can’t the doctors do anything?
Why can’t the doctors sort you out? I mean they’ve always sorted me out and everyone I know so why can’t they sort you out? Tell me? It’s very frustrating and I can’t work it out

You should just stop taking all those tablets and just trust in God
Now I have a physical condition so if I stop taking my tablets, I would die, if you stop taking your medication nothing will happen apart from you will be trusting God more and you won’t have any side effects, so simple!

It’s a choice – you can change if you want to
Yeah… of course I choose to hate my self and wish I was dead… Thank you for pointing out it’s just a choice that I need to make

Things to say instead


This is OK to say in BOLD and This is why it’s OK. It’s not as hard as it sounds. Just be kind and empower them

If you want to talk, I’m here to listen
I care about what’s happening to you and need to listen to you as a friend to show you that. Then I can understand and help you. I realise this is going to take longer with someone who is mentally ill.

I’m praying for you, do you want me to pray for you now?
I don’t have any magic answers and I’m not trying to give you one but what I can do is pray for you. I know God answers prayer.

I have some practical wisdom I can share with you.
Because I’ve spent time with you and listened to you, I can see you need rest, space, food, spiritual advice etc and can help you.

I have no idea what it must feel like because I’ve never suffered from mental illness but I can understand it better now
I can’t contemplate what it must feel like to be mentally ill and I can now have sympathy to anyone with mental illness because I understand it now.

Could I help you spiritually in any way, perhaps share some scriptures that you may be able to draw strength from?
I can’t imagine what its like to not be able to draw from my bible because I’ve lost the ability to think clearly and be in control of my mind. If I can help by writing some scriptures out or reading from the bible for you, or get some bible tapes for you, I will.

Shall we go out together somewhere? Can I take you out somewhere?
Special times with friends help and if I can help take you out for a while it may help you escape from the same surroundings and focus on something else for a while. It must be awful when you are to not be able to go out at all because you are ill and you’ve lost your work world and other social outlets.

I can see your not feeling great at the moment, do you want me to go and come back tomorrow or another day?
I can appreciate that if you’re having a really bad day, I should come back another time and I’ll be able to help better

Do you need help getting your medication or a lift to the specialists?
This is a really practical thing that you need and half an hour of my time would be a real answer to prayer to you

Talk to them about something positive in their life, or an improvement that you’ve noticed
Sometimes when you are so in the middle of something and experiencing it every day you can’t see the small improvements that are happening or recognise an achievement or progress

Find out any likes, hobbies, what makes them laugh and work towards helping them achieve one of these
Laughter’s good medicine, we all need purpose in our lives and to feel we’re achieving something.

Help them work through a panic attack, and irrational thoughts.
Help them to breathe by going through simple exercises, pray for them, talk through calmly their thoughts and help them rationalise them.) All the physical effects it can feel like you are dying and is very scary. This can be very draining yourself especially if emotionally attached so take time to recuperate yourself after.

Don’t give up on them; it can take along time and a lot of hard work to help someone recover. They need friends and loved ones to stick by them.
Medication alone won’t do it; it’s all the social help and one to one work and prayer that will see the breakthrough

Alan and Amanda Stephenson, 05/05/2010