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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Beginners guide to Kinesiology Tape

This stuff isn’t available on prescription which is sad as I really think it should be (my preferred brand is Rock tape if anyone wants to gift me some). If I have more than one part of me to tape at once it can get expensive. 

I really long to see a medical trial/study purely focused on the effectiveness of kinesiology taping in patients with EDS hypermobility type as I think it can be as effective as bracing/splinting. The last time I had recurring elbow dislocations I taped it and it gave great support and feedback. 

I think only then will the medical profession wake up and make this available on prescription – at roughly £12 a roll I hope that is soon!

By popular demand, here’s a quick introduction to using kinesiology tape. I am not officially trained in any way so if you’re unsure about taping please consult your physio or similar. This guide aims to provide a few hints and tips that will get you started with taping and help you decided if its right…

http://jboccupationaltherapy.co.uk/kinesiology-tape/

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

A Poem For You

I have fallen in LOVE ❤ with an album of late, the band Refuge released there Album Allowd A Voice (link is to iTunes) back in October and I have been playing it ever since! Possibly what I like most about it is that the songs are jammed in-between poetry and today I am going to share one of the poems with you because I think its fab!

The Universal Disease By Jeannine Nield

Someone starving, bleeding, crying
Screaming, tortured, slowly dying
How do you feel when you see
These scenes of pain and misery?
A crippled man with sightless eyes
With him you surely sympathise

A women battered black and blue
No doubt receives your pity too
How good we are at sympathy
When pain and torture we can see

But What if tears are left uncried
And screams and anger locked inside
With memories of abuse and fear
And hopelessness year after year?
As a child I was neglected
Ridiculed, ignored, rejected
Sexually abused by Dad
Yet grew up thinking ‘I’ was bad

Despite this I did well at school
But still I suffered ridicule
With others I could not relate
And so turned inward all my hate
No confidence, no self esteem
To be accepted was my dream
Tried sex and drugs to fill the void
But there was nothing I enjoyed
Poured out my heart to my GP

Where upon he labelled me
And down my spine there went a chill
As he pronounced me ‘MENTALLY ILL’

The fact that I’ve a high IQ
And that I’m kind and loving too
And with great talent have been blessed
Means nothing – because I’m depressed!
Twice I’ve attempted suicide
It would be better if I’d died
Because I’m still ignored, rejected
Ridiculed, neglected

Many so called ‘normal folk’
Treat my illness as a joke
Full of anger, scorn and greed
They seem oblivious to my need
And yet it’s ‘normal’ types like these
That fuel the fire of my disease
But I would rather be like me
And try to live in harmony
Than have a heart that’s full of hate
And skin as thick as armour-plate

You could help me to get well
To climb out of this living hell
Offer me a helping hand
Show me that you understand
Put away your needless fears
And all your preconceived ideas

‘MENTALLY ILL’ is just a label
Yes – I’m insecure, unstable
But if you’d lived my life instead
You, too, would be depressed – or dead!

Corneal Calamity

Well its been almost 2 weeks now since I saw a corneal specialist at the eye unit, meaning I now have 2 eye constants! For those not in the know the cornea is the clear window at the front of the eye, it plays a role  in shaping the eye and keeping it at the right pressure.

For a while now i have known I have a problem with mine, it all started way back when I started trying to wear contact lenses again, I was getting on fine with them, and gradually increasing the time I spent wearing them, not wearing glasses was great! As far as I was aware there where no problems until I went for a check up and it was found that my corneas on the other hand HATED the change and where dye was placed in my eye they shone back brightly in such a shade of fluorescent orange that the optometrist doing my contact lens stuff was utterly shocked and ran off in search of a camera. She didn’t find a camera but immediately stopped all talk of contacts and reffered me to see my eye consultant, this is probably approaching 2 years ago.

I was diagnosed with corneal oedema, basically flid filled sacks where forming on my cornea as a reaction to having higher than normal intraocular pressure (caused by Glaucoma) a change in medication and no more contacts for me and the general consensus of the consultants I saw was that all would be well.

unfortunately that was not the case, my corneas have continued to be cloudy, and got cloudier. To be perfectly honest I have not really noticed this except maybe when I am very tired I fund I struggled to read even large print as everything is just rather blurry. I was refered to  a corneal specialist.

Now we are back up to me sitting in the doctor’s office a few weeks ago, I was fully expecting on seeing Mr Corneal Specialist that I would simply have another change of medication and that would be that problem solved, what I was essentially told was totally unexpected and a total shock to the system.

It turns out I need a corneal transplant in both eyes, this involves taking the cornea from a donor (yes a DEAD PERSON) and implanting it into my eye, once my own damaged bit of cornea has been removed.

This is because the cells right at the back of my cornea are dying as a result of all the surgery I had as a baby that saved my sight in the first place, apparently it’s happening to everyone who had the kinds of surgery I had back in 1988. My cousin born a few years before me with the same eye conditions has exactly the same problem. So the death of the cells in the back of my cornea is causing them to break away from the rest of my corneal float around and get in the way turning all cloudy and full of fluid.

Cornea transplants are quite common and are more often than not successful and rejection is relatively rare, and if the worst does happen they simply repeat the surgery. However for me there are more risks, my eyes are smaller than average and I don’t have a lens which is normally critical in helping the eye keep its shape during the surgery.

On the plus side the surgery might improve my vision, I say this but too much of an increase of my vision would defiantly be a negative for me. I have always been at very best partially sighted, if I was offered a drug that could get me full sight tomorrow with no risks and a 100% guaranteed success rate – I would not take it! I am happy the way I am being blind is part of my entire identity I have never really known any different to suddenly be fully sighted I would struggle to cope with such massive life change.

On the other hand the surgery might not work, it could all go terribly wrong and might damage my vision further.

However by far the worst case scenario is that I do nothing, slowly the condition of my corneas will deteriorate and I will lose all the vision I have, the amount of pain I experience in my eyes would also increase. This scares me, as much as I don’t want to be fully sighted I don’t want my vision to deteriorate dramatically either, I value the eyesight I have enormously and the thought of going totally blind is heartbreaking for me, it would without a doubt turn my life upside down, as it would with anyone.

It’s been a difficult few weeks trying to work out what I want to do about all this ready for when I speak to Mr Corneal Consultant again in a  few months time, the decision actually seems clear, I have to go for surgery and just hope an pray everything goes to plan. To further complicate matters I am not ashamed to say I am rather phobic of hospitals, them make me incredibly uneasy. I am lead to believe that the surgery requires a 2-3 day stay in Hospital. I can just about cope with a visit to the eye unit the thought of spending time actually IN hospital scares the pants off me – As it would lots of other people I’m sure.

I see Mr Macular Consultant at the end of this month and there was talk when I saw Mr Corneal Consultant that I need to see a Glaucoma specialist as well as things are not to stable in that department at the moment either, apparently I may have come to the end of the road when it comes to glaucoma medication too, meaning I might need more eye surgery to do something for my glaucoma too.

Overall in it’s a particularly unhealthy time for my eyes, but there is still hope!

For those who like to watch disgusting things here’s a link to a Youtube Video of the type of surgery I need, I warn you it’s not nice to watch!

Spurred into action

Well bloggers its been a while quite frankly hasn’t it? In truth I have been rather apathetic when it comes to keeping the blogosphere updated in the world of Jemma Brown, this is in part has been due to sheer busyness but also a slight lack of motivation.

However this morning all that has gone I am ready to blog I am unsure as to whether it is the sleep deprivation, the mixture of caffeine and sugar rushing through my system or just my puzzlement and need to share it with someone who will understand – not that I totally expect this blog post to be understood by the masses. This last view point is not because it is complicated but because i myself am confused.

I’ve just read that NICE is withdrawing funding for the cancer drug Avastin.

The article is sketchy but this is a worry for me, Avastin is the drug that I periodically have injected into my right eye to help prevent the impending explosion of blood vessels that will without being kept in check result in my loosing all the vision in my right eye.

The treatment I have received three times now (I think – it might be two, I honestly can’t remember) without it I would have lost all the vision in my right eye by now. Don’t get me wrong my right eye is rubbish, it has always been the less useful of the two but as i am sure my readers will appreciate any vision no matter how little is precious.

So anyway back to the point in hand I am still researching as to whether the drug is also being withdrawn for its use in the treatment of Wet Macular Degeneration… Its a complicated issue so I am going to just ask my consultant when I see him next week.

You Know You’re a Blind Person When…

Last week I read this article by Charlie Swinbourne Titled “You Know Your Deaf When…(Part 1).

This of course got me thinking of the you know your blind when hilarity this is something I have often discussed with blind mates and it stuck me that I have failed to post something like this before. Thanks Charlie for bringing it to my attention!

I must say all of these things you are about to read are true and have happened.

I would also like to add that if you have your own additions to the list you are about to read stick them in a comment with your name, URL and whatever and I will add them in!

Ok so after all that…

You know you’re a blind person when…

  • You accidentally wash your hair in factor 30 sun creme.
  • You don’t have a single pair of matching socks.
  • You hand your sister a container which you think is shampoo, your slightly less blind sister manages to see that it is in fact Hob Bright oven cleaner.
  • You go on holiday and accidentally come back with someone else’s Guide Dog.
  • You persuade a friend to play darts with you and hit your friend in the leg when it’s your turn.
  • The phrase ‘Blind Drunk’ has a totally different meaning to you.
  • You are totally unaware that the city you live in is completely consumed with fog… it always looks like that to you!
  • You HATE the idea of Shared streets!
  • You hate car drivers except when they are driving you somewhere.
  • Because you have some vision strangers refuse to accept that you are blind.
  • You get told off by the Police for walking into a bollard, they think you have had enough to drink already; ON YOUR WAY TO THE PUB!
  • Having a Guide Dog or cane means you never get ID’d in pubs.
  • You have full conversations with what you think is your friend, you later discover she’s not actually there.
  • Walking straight past the person you are supposed to be meeting is a regular occurrence even if it is someone you know well such as a parent.
  • Reading the cooking instructions on the food you purchase is totally impossible so you guess.
  • A person walks up to you says your name and starts a conversation you talk for a bit and they leave… You still have no idea who it was.
  • What colour are my trousers?’ is a perfectly reasonable question to ask a date.
  • You high-five the persons face instead of their hand.
  • Other people tell you to ‘watch out’ and then apologise and get all embarrassed.
  • You don’t care about 3D.
  • You stop traffic… With your cane/Guide Dog.
  • People you meet tell you all about their blind aunt flora (or other relative) and ask if you know her… After all, all you blindies know each other well.
  • The thought of you running scares your off duty Guide Dog so much that he proceeds to jump on you to make you stop.
  • You wear ear plugs to gigs… your ears are very valuable.
  • Walking along you hold on to your friend’s arm EVERYONE assumes you’re a couple.
  • Audio Description gets you VERY excited.
  • You forget that the friends you are meeting can see, you text them telling them exactly where you are sitting instructions on how to navigate to your position and what colour jumper you are wearing.
  • ‘How long is your cane?’ is a totally innocent question.
  • You spread Marmalade on your toast and take a big bite… Only to discover its actually mustard.
  • You walk into glass doors.

I’ve Had A Needle Stuck In My Eye AGAIN!

It’s official on Tuesday I visited the eye unit and had my second injection of a drug called Avastin.

The aim of this needle poking is to make some blood vessels at the back of my eye that should not be there wither and die! It’s these tiny blood vessels that cause hemorrhages that damage my Macular that then lead to vision loss.

The process of being injected involves having lots of rather stingy local anesthetic eye drops placed in you offending eye. Then the whole area is cleaned with orange surgical grade antiseptic including the eye-ball. Then more this time slightly less stingy anesthetic eye drops. It’s at this point things get interesting a clip is then applied to hold both the upper and lower eye lids open, this is not to fun and I did feel some discomfort all the way along with the clip on my eye this time.  The big guns then come out local anesthetic is then injected underneath the cornea in the area around where the injection is going to go, this also stings a bit.  Finally it is time for the final and biggest needle yet the one containing the Avastin. The only way this can really be described is its like someone poking you in the eye with a needle the initial area where it goes in is numb but as soon as it pierces the white area of the eye it hurts.

Upon leaving the hospital I was given the advice that my eye would probably hurt later and that I would probably need to take some painkillers inside my head I was thinking actually I need some right now!

Tuesday and Wednesday my pain was on and off pretty bad its like someone has punched you hard in the eyeball alone, in effect your eye is bruised. I will say this time I looked less like something from a horror movie as my eye did not go blood-red.

Blinder

Well readers as you may well be aware I have, simply for ease of understanding labeled myself as a blindie for some time. When you refer to yourself as a blinky most people of a certain age think you are talking about a cartoon koala bear not describing your visual impairment as partially sighted. So blindie has worked to convey that sense of hey I’m visually impaired it’s not a taboo subject and I am comfortable to talk and even joke about it.

I have been partially sighted since the day I was born, well I was actually born with very little sight at all but after some fantastic surgeons working there magic on my tiny peepers all I have ever known is partially sighted.

Growing up it has been drummed into me, quite rightly by various medical professionals, my parents, teachers and sometimes even friends that I have to be careful about a bang on the head. This is because if I sustain a serious blow to the head I am at a higher risk than your average human being of detaching a retina at the back of either eye or worst case scenario both!

I never expected anything more than this, I am a realist and I am grateful for what I have. I also never really expected anything less for most of my life I thought everything was going to stay stable and  be the same for ever. Oh how naive I was!

Last Monday I went for my appointment after I had the hemorrhage a few weeks ago. The very nice consultant, who incidentally reads my blog here (hello Mr N) confirmed that I have had a bleed and the general state of my eyes,  especially the right one is not good.

We decided together that I could now be registered blind, before that moment I was partially sighted the way I had always been growing up and suddenly I had the new label of a blind person.

The thing is the more I think about it the more I realise that it is just a label but this is very difficult to comprehend.

A tiny part of me is devastated which I think is only natural but in reality the change of terms means almost nothing. I have not changed as a person my life is not going to change much if at all with this new label but it feels very strange.

I guess to sum up everything quite simply its a blow and a shock but it could be worse and it’s not the end of the world.

Positives will come out of it,  I have the joy now as a person registered as blind to a half price TV license so one day when I have enough space and money to buy a TV I can look forward to paying less license fee!