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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Woman With #EDS Fires Back After Being Accused of Misusing Disabled Parking | The Mighty

“I think it’s my turn to say something.”

Source: Woman With EDS Fires Back After Being Accused of Misusing Disabled Parking | The Mighty

 

This is a constant concern of mine initially when I first had a blue badge (UK disabled parking permit) as a blind individual with a guide dog I delt with people asking why I needed one when I could walk fine.

I used to have to justify it, even to friends and I know many others have too. Its all about being able to get your guide dog in and out of the car safely (if you have a guide dog). If the dog is traveling in the front footwell you need to be able to get the car door open as wide as it will go to get both dog and owner out safely, disabled parking bays allow for this and also if your dog is in the boot of the car many have extra space at the back  to allow you to get your dog out without standing in traffic. it makes things a lot safer for all involved. The second reason is parking closer makes it easier for a blind person to get into for example a  store safely. Navigating a car park with traffic can be tricky even with sighted assistance so the less time that is spent in the path of oncoming traffic the better.

Over the years I’ve become more than comfortable explaining that to people but now I have an additional need.

You see I also have EDS and if its a bad day I am DESPERATE to get in that blue badge spot. On a bad day for me I am in a lot of pain and my legs feel like they could buckle at any moment.

This is obviously something people can’t see its totally invisible – in fact I’m pretty sure most of my friends don’t get how bad my bad days are ( with the exception of the inner circle you know who you are) and why is this? because I spent years hiding it.

So basically people don’t judge you just can’t see how much pain the person next to you is in or what they are going through.

Fragility

I’ve become aware over the last few months just how fragile the human body is and what a God given miracle it is that the majority of people have a fully working body – it may have its individual quirks but generally speaking works ok. Everything from the cells in our liver to the way the ball and socket joints in our shoulders and hips fit together was so perfectly created by God our creator.

Increasingly mine doesn’t work how it should, and of late its been hard to accept this and deal with the frustrations it causes.

Aside from being a bit blind I’ve got hypermobility syndrome it affects the connective tissue in my body it means my joints are very loose, I’m very double jointed. My joints are under significantly more strain than your average joints, they less stable  and more prone to dislocation and injury. As a quirk it also makes LA less effective so for recent surgery i had to have 5x the normal amount injected into me!

Since the beginning of june I’ve sprained my ankle (for the millionth time), I had just got back on my feet after that and then I developed sciatica and had crippling nerve pain in my leg and then I’ve spent the last 3 weeks in constant pain every day with some kind of back/neck/shoulder problem.

Its all brought to my attention just how fragile the human body is – particularly mine!

Most recently I’ve had knee problems I injured my medial cruciate ligament back in December, we are now well into <arch and although my MCL is feeling a lot better I injured the burser just as it was starting to improve. The result I’m in pain every day at the moment some days are better than others but I’m very limited as to what I can do physically. I can’t even run for a bus let alone play football or cricket, I can’t handle uneven pavements or stairs but I’m thankful every day that I’m not on crutches and I’m able to walk.

I’m not going to lie there have been times over the last few months when I have really thought ‘God why’? Its a totally human reaction to living in pain and suffering. The way I think of it is simply this: Nothing bad (pain) comes from God on top of this we re all born in the image of God and are perfect in his eyes regardless of what physical or psychological disability we are born with. God also has a purpose for all this as he has a perfect plan for my life – for example my recent knee injury has seen me start wheelchair basketball and its been fantastic I plan to continue playing when/if my knee recovers. It has been a totally liberating experience!

The other thing of course is that its quite difficult to explain this to people unlike my blindness people can’t see it, when people look at me they see someone that is 6ft1 that looks strong but in fact my joints are incredibly weak. Someone bumping into me in the street while i was caring a bag of shopping (which wasn’t even very heavy) caused my elbow to pop out of joint and then back in a couple of months ago. I sometimes feel like i need a fluorescent sign above my head warning people that I’m coming, as if a guide dog wasn’t a big enough sign!

I have to make a conscious effort to tell people my limitations and trying to articulate whats wrong with me tends to be quite tricky – I don’t want to moan at people all the time and i think its quite hard for people to imagine what goes on inside my joints even when i do explain.  Like everyone I find it hard to admit to my vulnerabilities so it can be a real challenge.

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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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!

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.

Its A Tough Time For Me

As I sit and write this I struggle somewhat with how to start, in truth it has been an incredibly difficult few weeks for me on all kinds of levels.

For starters University is not going well, it’s not the fault of any individuals but in short I am not getting the disability support I need to be able to keep up with my able bodied peers.

Books are inaccessible, I can’t even find the books I need to look at in the library independently let alone read them.

I have library support time where support workers help me find the materials I need and the read the relevent content which I record as audio compleate with page numbers and all the referencing data one could ever need. From these audio recordings I can then make my own notes, copy down quotes word for word and complete my essays and other research just as well as any other student.

The current problem being that unfortunately The University’s disability support team are massively over stretched, understaffed and struggling to meet the demand.

I have in the last few weeks only been getting one or two hours a week of this reading support which has meant that I am seriously struggling to keep up with my workload in a big way. My lecturers are understandably concerned about my progress and my ability to cope alongside my peers and the whole situation is just leaving me incredibly stressed!

Aside from the academic problems I continue to have serious issues with where I am living, unfortunately for me I am in first year halls even though I am in my second year.

The freshers I live with are phenomenally selfish and have all year caused problems for Gus and myself. There have been weeks during this academic year where they have literally partied every night until around three maybe four in the morning. When they finally come home they are completely out of their minds on alcohol and who knows what else screaming their heads off. That’s not to mention the many times I have left my room to walk down the corridor only to trip over some shoes or another object that has just been left in the middle of the corridor or worst still discovered that they have broken a glass and not made any attempt to clean it up!

Recently things got to the point where they were finally given their final warning about the noise they make. Since this has happened things have improved slightly but I am still regularly kept awake at night.

Only being able to sleep for a few hours has a serious impact on my ability to function, I will be the first to admit that I need a lot of sleep to function normally and if I don’t get it I can struggle with even the most basic of tasks. A three-hour session on public relations is a serious test of my ability to stay focused after such a terrible nights sleep. I worry that the lecturers see me yawning my head off in sessions and think I am really bored or that I have been out partying all night when in fact I have been in halls tucked up in bed attempting to sleep through a heard of elephants running around the corridors slamming doors, playing loud music and screaming there heads off.

Last week things got particularly bad the freshers where having a loud evening and I had already called security earlier on in the evening who had ask the freashers to keep the noise down. It got to half past twelve and there were a group of them congregating outside my door already drunk making a right racket. I had had enough so poked my head out of my door in my PJ’s with no glasses on to explain that I had a nine o’clock lecture in the morning and that I needed to get some sleep. I then got what can only be described as verbal abuse back, very personally aimed around my disability. It’s nothing I have not heard a million and one times before, I reported the issue and it has been dealt with very seriously so I at least feel like I have closure on that particular matter.

Somewhat unsurprisingly considering all the stress I have been under I developed a virus that I have really been struggling with in the last week mainly I have just been rather nauseous but it has had one slightly more unusual twist. It caused me to break out in very bad hives, the skin on pretty most of my body turned bright red puffed out and developed little bumps that almost looked like insect bites. By far the worst part of this was the incredibly intense itching. It is incredibly hard to concentrate on Harbermas’ theory of the ‘public sphere’ when all your mind is really thinking about is how much you would like to rip off your skin in the hope that having no skin would help the itching – of course this is totally irrational! I can however draw a line under the whole affair as yesterday I saw a very nice doctor who gave me a very strong prescription for some antihistamine which has totally cured me and for this I am incredibly grateful.

As well as all of the above my life has run very far from smoothly, Gus and I had a serious incident that had the potential to end his career as a guide dog, luckily as of yesterday this is all sorted now and Gus will all being well continue to be my guide dog for a long time to come. Gus was also ill for a week with various infections, he had to have a week of very light work and was utterly miserable but is now once again fighting fit.

The relationship I was in has ended, we still intend to stay friends as we are already booked in to see Jon Bon Jovi at Wembley Arena in the summer and as we play on the same cricket team.

I am once again having pretty serious issue with my shoulder from September to January I was undergoing physio. I have now been booted out by the physio department for missing an appointment. It was totally out of my control as I had a really bad fall and could barley walk let alone trek for 30 minutes to get to the appointment, but rules are rules. Honestly in my opinion the physiotherapy was doing my shoulder absolutely no good whatsoever, I spent an age every morning and evening making sure I did my exercises to no avail. If anything my shoulder is currently worse than it ever was, nerves are being pinched which is as painful as it sounds.

So all in all I have had a very rough time of it all recently and in truth it has seriously got me down, there has literally been one problem after another and I am just hoping everything will turn out ok in the end. I am incredibly stressed which does not help matters one bit so I am trying to remain calm and not let the world around me bother me too much!

Braille: A necessity for a modern day VI journalist?

Since my right eye deteriorated so suddenly I have been solely reliant on my left eye for every single day to day task, from reading large print resources to putting on make up one eye must to the job of two.

As a result I am getting more eye strain than ever before which tends to make life a little tricky, hopefully over time my eyes and brain will adjust to the way things are now but there is know way of knowing when or if that will completely happen.

As a result my university lecturers  have strongly advised me to learn braille and they are not just saying this out of the blue, they have been doing there research and have spoken to several blind journalists who have all have stated the importance of braille for VI journalists and have declared that it is a crutial must have skill.

The issue of course is that I have absolutely no experience of learning braille and will have to learn it from scratch, something that I know will be very difficult  considering how late I will be starting to learn.

In addition I can’t afford the price of even a basic Brailler something that is quite essential in order to learn how to write braille, I have been trawling the web already trying to find a cheap model or a second hand one but have so far come back with nothing. if anyone thinks they may be able to help with this please get in touch!

I also have to find a Braille tutor to teach me, I have absolutely no idea on where to start looking or who is going to pay for the lessons as cost is going to be a serious issue even if I do get a part-time job.

I really do see the possible benefits one thing I have learnt through the whole process of my right eye deteriorating is that nothing is guaranteed and all though it is a cliché nothing should be taken for granted. With this in mind I defiantly need to start learning Braille so I guess I will keep you posted.

BBC – Ouch! – Best days of your life?

BBC – Ouch! (disability) – Opinion – Best days of your life?.

School – for me it was not the happiest days of my life, in primary school I was isolated and ignored by my class mates, I had no friends was often bulled and did not have enough support for me to be able to access everything that went on in class.

Secondary school saw me make friends who accepted me for who I was, I had about 10 or so friends. The rest of the school saw me as an easy target and I was bullied, abused  and assaulted. As if that wasn’t all bad enough I had the teachers to deal with and the stigma of having an adult sat next to me in every class.

Then there where all the little problems that come up in class, having someone read to you in a room that is silent, having to sit right in front of the video to try and see it, missing out on posters, news and important events thanks to not being able to see them.

College was supposed to get better and at first support wise everything was a lot better I had more choice as to when I did and didn’t want support, but there where serious issues with members of staff. One such member of staff did not treat me well as a result of my disability, it was constant verbal abuse, that has damaged me forever.

College also saw my isolation return, for the first 2 years at college most days I had one of my best friends to keep me company at break and lunch times. By my third year I spent all breaks and lunchtimes either sat in the library, wandering around the campus in circuits or I just left and went for a walk.

It’s actually painful writing this post, there are many events during my education what I simply cannot write about, I have kept this post to the bare minimum but at the same time I feel I  have to convey what as a disabled kid I went through and now I feel thoroughly depressed!

My Day On The Ward

It’s just over a week now since I spent a day on the short stay ward of the eye unit, it was a long day particularly as I was sat there for about 4 hours waiting for it to be my turn.

Then when it was my turn all went well,  I didn’t see the needle coming towards my eye scream cry and then run, I was calm.

The whole op itself was about as horrific as I expected, my eye was numbed with drops and then rinsed out and then numbed and then rinsed a good few times.

Then I discovered there where actually two needles to go in the eye, needle number one was to numb it all and was supposed to sting, I love how oxymoronic that is!

I braced myself for the terror of the numbing needle and it was a complete anti climax didn’t sting at all really.

Then I got told to look left so the big gun, needle complete with Avastin could be inserted.

It hurt a lot!

My surgeon had to apply a lot of pressure to get the needle to pierce through my sclera (the white bit of the eye) and when the needle did get through it hurt a lot and there was a very odd popping sensation, I suppose you would expect that really but it was gross!

I can now conclude that the numbing injection number one did not work!

Due to the amount of pressure the surgeon had to apply my eyeball was very bruised and a lot of the surface blood vessels leaked so I left hospital with the white of my eyeball blood red.

As the numbing drops wore off I gradually got more and more pain in my eye, it streamed with tears constantly (which was irritating).

I had real big problems going outside in the sun and wind and stuff so I ended up having to patch my eye to make it  more comfortable. I can now safely say that I have heard every pirate joke going!

It’s taken a week for it to fully settle down and there is still some discolouration but I look less like a freak now.

I have to go back to see my specialist to discuss how it went and if it needs to be done again 4 weeks after it was done, its been 10 days and so far I have not had an appointment come through  so I think I will be chasing up the appointments system yet again!