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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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.

BBC – Ouch! disability – Play – Dear Disabled Friend – Andre Jordan: Dear Disabled Friend #65

BBC – Ouch! disability – Play – Dear Disabled Friend – Andre Jordan: Dear Disabled Friend #65.

Oh its all about the ‘S’ Word!

For those of you that don’t know my autobiography is going to be called “Brave Special Different” Due to the frequency of the times these words are used in my direction as a form of patronisation, I dislike this VERY much!

And don’t get me started on “differently abled”… I swear I’m not a violent person but someone saying those two words in that combination could push me over the edge!

BBC – Ouch! (disability) – Opinion – Disability Bitch – Disability Bitch vs blind people

BBC – Ouch! (disability) – Opinion – Disability Bitch – Disability Bitch vs blind people.

I have to say I would have to agree with Disability Bitch on this one, I don’t get what RNIB sees to gain by telling the world that blind people are a bigger drain on the econermy than many other disabled people.

It worries me take stats like that the wrong way and anything can happen, I worry it will open the doors to all kinds of discrimination and service cuts in many areas that are stretched already!

The country is facing economic depression – simple cure kill off all the blind people and it will all be fine. I seriously hope not, but look at history it has happened before.

BBC – Ouch! (disability) – Opinion – Disability Bitch – Disability Bitch vs blind people

BBC – Ouch! (disability) – Opinion – Disability Bitch – Disability Bitch vs blind people.

I have to say I would have to agree with Disability Bitch on this one, i don’t get what RNIB sees to gain by telling the world that blind people are a bigger drain on the econermy than many other disabled people.

It worries me take stats like that the wrong way and anything can happen, I worry it will open the doors to all kinds of discrimination and service cuts in many areas that are stretched already!

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!

The effect of it all

What’s been the effect of all this new eye stuff on my vision, my life and the way I live?

Bloody hell I was clumsy before but now seriously I am worse than ever,  everywhere I go it seems I cause a trail of destruction!
Any co-ordination I once had has now gone completely, and lets face it hand eye co-ordination has NEVER been my strong point.
Balance to has got worse I wobble a lot more than ever before, I’m falling a lot more than I have in a long time to and I’m rather tired with it all.
Possibly the worst bit is the eye strain, persistent headaches and being tired and grumpy all the time.
So in short I spill everything, walk into stuff, break things and am generally a walking disaster!
Oh well at least its amusing for you all to watch all my mishaps!

Change will happen to ME

It seems strange to be writing about change as I have just changed the layout of this blog, it seems to be creating a little sub theme, but the change I am referring to here is a life change.

It’s at this point I need to mention Beth and her blog ‘Screw Bronze‘; I have been following Beth’s blog ever since the start of the Ouch project and she is a truly fantastic example of a human being, if you do nothing else today just pop over to her blog and have a read. Her latest post titled ‘Badminton, illness and change’ has really hit me and helped me with a change I am getting to grips with right now.
As I am sure readers will be aware I have a bone condition in addition to being VI its that (not so) little thing that everyone ALWAYS forgets about, but trust me I never forget about it!
My condition has always been one that is likely to flare up and deteriorate over time, I have always known this but today I have come to a bit of a milestone.
After walking down The (EFFING) Eiffel Tower and then yesterday (just as things where improving) managing to slip over in the mud I am having a very serious flare up.
My left hip and knee take it in turns to be very painful and I am really struggling to balance.
I have hit the point I always knew would happen, it is time to obtain a walking stick.
This is for me a bit of a big thing, I am possibly being a bit pathetic but now the time has come I am finding it rather difficult.
People will see me and Gus and then a stick I’m worried about what will go through peoples heads, questions they might ask and the reactions of my friends, acquaintances and complete strangers.
Reading Beth’s blog has made me realise, its just an adjustment to a new normal for me and everyone else, I have no need to feel self conscious or concerned about peoples perceptions and prejudices.
I am ME; a stunningly beautiful, 20 year old, independent. visually impaired woman who sometimes needs to use a stick to get about and more importantly I will not be ashamed of what I am.
OK its a change for me to think about using a stick, but it will only be a change for so long, and then it will become the norm, nothing will be different.

Review of 2009 > Hopes for 2009

It’s 2009  so I wanted to wish all readers a happy new year and wish you all a happy, healthy year filled with great stuff!

I also thought I should write some kind of reflection on 2008 and my hopes for 2009, so here it goes.
2008 started with a new relationship, which at the time was fantastic, however 6 months later it became very apparent that it was wrong for both of us to continue how we where, we where in hindsight simply too different; that was the end of that. At the time devastating but now it was the right thing to happen.
The first half of the year was pretty mundane, I was ticking over at college, with a unconditional offer I didn’t NEED to be there, naturally motivation to continue diminished, leaving me running at tick over, putting in lots of effort was pointless.
Of course lets not forget that for the first half of the year I was in the deep, darkness of major depression trying to find an anti-depressant that worked for me and wondering if I would ever be the same person again. I went on some horrible meds in this time that made me ill or seemed to improve my condition for a few weeks and then caused me to drop back down with a big bump, I remained on the end of a very long waiting list for further treatment on the NHS, and felt rubbish!  
Eventually my fantastic (now former) GP got me on the right medication for me, everyone is different and it takes time to find these things, but things started to look up.
Then in May I got a phone call that has completely changed my life,  a call form Guide Dogs to say they thought they had a match for me, the match of course being Gus who you will all know the story of.
At the end of June, begging of July Gus and I trained and my life changed hugely for the better, he really is guide dog of the year material!
Not only did this mark the start of me and my boy it marked the end of college and time to start preparing for the move to university, big but positive changes where afoot.
September saw the start of university which is fantastic, breaking news day which was utterly terrifying but probably good, and meeting all the new people. Gus and I continue to have a fantastic time at univeristy, I think Gus sometimes wishes there where more dogs at university to play with but over all he loves it.
( HAPPY NEW YEAR TO ALL MY NEW UNI BUDDIES!! see you Monday.)
Sadly 2008 also saw the end of my guest blogging for Ouch! I hope to be able to do more stuff with the team in the future but for now I am incredibly thankful for the opportunities they gave me as a teenager with no idea what to do with there life they helped me to find my path and follow it!
So what about 2009? 
I have many hopes for the year, my first of which is to try and be less of a complete wuss, I need to have more confidence in my writing ability, not something that can be done over night by anymeans but a year should be a start.
I hope to be off my anti-depressants by the end of 2009, I am now in recovery but the medication I am on is rather a high dose and highly addictive, so this is more of a challenge than it may seem to some, I am determined to get there and hope that 2009 will see me in a true state of recovery!
I hope Gus has a healthier new year, that is accident free and good for him.
I all ready have a lot of things planned for the new year, lots of which you will probably hear about here first so I would also like to take a moment to thank you all for reading this crap!

Ouch! The Streets, and a bit about me

[Wow yet again it appears to be quite some time since I last blogged, I really am getting lazy so am as of now going to commit to keeping my blog up to date.]

 

Ouch!


I have no excuses now for not keeping the blog up to date, the Ouch! Guest blogging program has been put to an end with the redesign of there website, so I am no longer writing for Ouch! I still have a webcam that technically belongs to them so you may well see me on Ouch! again in the future. 

Talking of Ouch! they have recently re designed there website and I would encourage anyone involved in web design to go and take a look at what a fully accessible website CAN look like. 

Lots of websites these days claim to be accessible to people that are visually impaired by offering the option of changing the text size, however in most cases this completely messes with the page layout text becomes crowded and overlaps other areas of text and usually becomes unreadable, the Ouch! website with its new design is fabulous!

The Streets 


Ok a band I’m really loving at the moment would have to be The streets, for anyone that has not heard there audio album offering I would seriously recommend it there album, is titled ‘Everything is borrowed’ It’s really worth a listen. One of the, I think lesser-known tracks on the album is this one the lyrics of which I have copied and pasted especially for you!

The strongest person I know – The Streets


One of the first things about you I did see

Is that you verse your views quietly

When nature verses truths I get violent feelings

But softly time will reply that’s wise

 

A delicate gesture of why you see

The best route through this being right through here

But met with a cute blind snide of fear

Best to go along with their idea

 

But , you gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

After taking the worst route, blatantly

Bang on cue we manage losing way

But in a squirmy backed and screwed up way

They actually managed passing you the blame

 

With that mad man wrapped with rage

Even then your temper stays exactly the same

And in that manner is the manner you stay

Beautiful person that’s happily unchanged

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

In the heat of speech

Your words improve

Right out of reach in my stirred up words

But every time they f**king blurt out drool

I’m noticing they’re all learning from you

 

Cos even though they know they cursed you

They should’ve admitted that they were fools

The next time they’re wanting to work things through

The very first person they turn to is you

 

Cos you gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

On a personal level


Well how am I? Now there is an intriguing question! I have had a few problems of late with my existing bone condition; in short my knee is playing up quite substantially. Approximately 2 years ago now I had a seriously large amount of physiotherapy on the knee in question, the effects of which would appear to have completely worn off. So here I am again feeling old beyond my years and in pain. I have now seen a doctor who has unfortunately not done a lot about it other than give me a prescription for 5 lots of Tubigrip and painkillers.

 

My problem with this is that its not going to sort out the long term issue (I am aware that nothing will do this completely), painkillers can become addictive and don’t alleviate all the pain very often and Tubigrip is fine as a temporary thing but the way the doctor suggested I should start wearing it all the time. This is a problem because Tubigrip is very flexible and elastic, it does not stay where it is put and with the knee joint in particular it creases up in the bend of the knee and digs in causing more pain.

 

Technicalities aside it is still essentially the same thing my bone condition and joints deteriorating, I’m not going to try and be upbeat about it, I’m going to be honest and say it’s a real blow, particularly as I have just started playing blind cricket again.

 

Other than all that I am doing ok, at the moment struggling slightly with a complete lack of creativity but I will get through that.

 

It could be worse

I keep reminding myself of this little mantra

It could be worse