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.

Advertisements

Living Well When You Are Not Well…

This is really worth a read it sums up the experience of having your life shattered (for me it was like lots of mini shards falling off slowly over time) everything you wanted and dreamed of being flushed away down the pan and having to set new goals.

My goals are very day to day I’m going to focus on what I need to achieve today or this week and not think too far into the future.

One thing is very clear for me if I did not know that God has a perfect plan for my life and He had this plan set out for me before I was even born! I put all my trust and hope not in medicine (which tells me there is no hope) but in God who has a plan.

Living Well When You Are Not Well…

Living Well When You Are Not Well…
— Read on lilyingrace.com/2018/11/01/living-well-when-you-are-not-well/

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

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/

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.

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!