Me today – sorry to have missed my regular Sunday blog groups!
Me today – sorry to have missed my regular Sunday blog groups!
OK not quite a film star! I might have mislead you slightly in the title, but I hope it got your attention. Hollywood is not calling any day soon, and I don’t think the beautiful girl is destined for a career directing or behind the camera, but we did laugh whilst doing our bit for “We Are Zebra Strong”! I tried very hard to involve the younger zebras from the PainPals house, but when I suggested appearing in front of the camera the response was along the lines of “in your dreams”!
We are nearing the end of Ehlers Danlos Awareness month – and awareness month for many other chronic illnesses – but for those of us living with these bedfellows the awareness is a daily reality, not just a month rolling around annually.
Chronically Jenni has once again put together some videos sharing lives of fellow zebras – in fact she had so much material this year that she made 5 Youtube features. If you watch closely you might find yours truly in the mix!
Please take a look – bookmark for later – share with friends and family. Just getting the name out there raises awareness for us! Details of fellow zebras can be found on Jenni’s channel.
Find Jenni here:
Thank you for watching!
This is a blog post from Caz at Invisibly Me blog marking:
International Awareness Day – ME/CFS // Fibromyalgia // MCS – 12th May 2018
★ ★ ★
Today I’d like to do my own little tribute for the International Awareness Day for Fibromyalgia. It’s a little in advance as I’m sure that come Saturday there will be many posts on this.
Fibromyalgia has long been looked upon with scepticism, with many individuals and medical professionals doubting its existence. Some have regarded it as an umbrella term for lack of an officially recognised diagnosis, while others have intimated it to be psychological. Recent years have thankfully begun to shed light on this condition. Tireless campaigning has helped to raise awareness, increase understanding and has worked towards official recognition. But the fight isn’t over yet. There’s a long way to go to reduce stigma and improve both diagnosis and treatment for those dealing with fibromyalgia.
I was officially diagnosed with fibro by my rheumatologist last year after dealing with symptoms for years, initially thought of as being due to other conditions, that there was nothing wrong with me or perhaps that it was in my head (which they also said about my stomach issues, and here I am now, with a stoma!) For a while, I had asked to avoid labels and ‘umbrella terms’, mostly for fear it would signal the end of the road. I didn’t want them to stop looking for causes and the root of the problem, leaving me forever feeling worse and with no real way to get any better. I wanted them to keep looking, to figure out what was wrong, how my life has taken such a turn so quickly and left me like this for so long. The official diagnosis is to be reviewed in the near future due to overlapping symptoms between fibro & ME and the query over whether it’s both.
For full post visit Invisibly Me – and please share!
This challenge has been started by Tayler @strugglinsmol on Twitter and she would very much like all zebras to take the challenge and help spread awareness!! Please share, tweet and join our #FragilebutUnbreakable challenge!
I will save you from more wittering today and publish the second half later this week!
#FragileButUnbreakable #EhlersDanlosAwarenessMonth #ZebraStrong
Someone opened the door today
And out I went into the world.
The sky was grey and the earth was wet
A chill in the air permeated my bones.
Nerves and joints hurt so bad
The titanium inside felt icy cold,
Pains misfiring and doing battle
With the pulses of current sent
To stop them in their tracks
From the electrode sleeping
Against my spinal cord.
Someone fought the cold today
As the park cafe beckoned,
A small alcove housed my wheels
And provided shelter.
Whilst an external heater,
At the lightest touch of a switch,
Spilt a glimmer of light and warmth
To wrestle with the cold world.
Last week I took up a volunteering role as a Chronic Pain Advisor for the online community of a UK disability charity (Scope). I was approached through this blog to take part and those of you who have been with me for a while will know that this is right up my street. To say that I am deeply honoured to have been asked is an understatement.
Pin for later
I have started to make some comments on the site, and it suddenly felt very real when an official title popped up after my name. It has also made me consider the importance of just how we relate to each other and the advice that we give – as a health care professional, a volunteer advisor or indeed a loved one. For each and every person is an individual and will come with very different needs – how often is this truly recognised by our health care professionals when seeing people with chronic conditions?
At a recent support group meeting the importance for sensitive communication skills became very apparent. Everyone in the group either had the condition or had a relative/loved one with, in this case, Ehlers Danlos Syndrome and had gathered to hear a medical professional, deemed an expert in his field, speak. Spoonies, don’t shout me down, but I do worry sometimes that when a group gathers there can be a danger of frightening new members with horrific tales of hospitals and procedures, but also a competitive element toward who has which symptoms – I have written about this before.
It became increasingly obvious as this particular meeting went on, that a couple of comments made by the presenter were very upsetting to some group members. I am certain that there was no ill will meant, but a point was made that this illness is not progressive, and the insinuation was that any progression in symptoms was down to the individual not exercising sufficiently. Now there may be an element of truth in this – the need to keep moving in order to prevent deconditioning – but the way in which it was said made many in the room feel like they were not trying hard enough. Picture yours truly sat in the front row in my wheelchair, and the message that I could have taken was that if I had done my exercises properly I could have restored my mobility and eliminated my pain.
Of course, I know that this is not the case for me and I also know that I do work at keeping as physically fit as I can and have always done my EDS exercises. Years of yoga kept me nursing for nearly 20 years beyond my initial back surgery! I also know that I can be bloody minded in my determination to do something…..but on days when fatigue hits, or pain flares, or the POTS leaves me reeling with dizziness and unable to sit upright, I assure you I will not respond well to being made to feel I am not trying! (Family..hold your tongues now and forget the other meaning of the word).
So this takes me back to my original point – we are all individuals and whilst we might share a diagnosis and certain symptoms, our actual experiences will all be different. Only this morning someone said to me that they appreciated that their own pain was nowhere near as bad as mine, but they would like some advice….But pain is subjective and we cannot compare my pain with your pain. I replied that one of the first things I learnt as a student nurse nearly 30 years ago was “pain is what the patient says it is” and I still believe this. Sadly a lack of time at appointments, a lack of communication skills to unpick a patient’s symptoms, and a lack of continuity to develop a trusting relationship between patient and medic, all fail to allow for true individual care of the person. This can be made even harder to swallow when a sweeping comment is made about symptoms by someone who has never actually experienced them.
It is so important for us spoonies to feel that we are listened to and being treated seriously – actually I think this is important for everyone, particularly where health is concerned and I hope to be able to justify the faith shown in me by the charity. The exception to this though is the couple of cases of man flu in our house at the moment, and their belief that their pain is worse than anything else!!! This is where my patience wears thin!
So I made it to the pain clinic in one piece – just! The body work did its utmost to stop me and it was probably the furthest that I have travelled in my motability chariot (in time – it was rush hour travelling into London, you understand!) – so our arrival at St Thomas’ was surrounded by a cacophony of feelings in back, hips and thighs, with the right hip spluttering the loudest.
Fortunately parking is never an issue because the carpark is so blooming expensive – but, any blue badge pals out there – did you know that at St Thomas’ you are able to park for free if you show your appointment letter and you actual blue badge to PALS. At Guys you can also park for free in the NCP carpark along the road by presenting your letter, NCP ticket and blue badge to security before you leave. Might have saved someone a small fortune there! What was an issue was getting into a lift from the basement to the ground floor – I mean, come on people, I am not sitting a wheelchair because I am feeling a bit tired. I can’t actually climb the stairs!!
The engine revived with caffeine and banana, we checked in to the pain clinic which faces directly opposite Big Ben and the Houses of Parliament – currently shrouded in scaffold. I always forget just what a wind tunnel is created along this stretch of the Thames and Wednesday morning was no exception – good job I was using my wheels because the icy gusts would have tackled me easily. As predicted the CNS was surprised and concerned when she saw me, but once I reassured her that the bodywork changes before her are down to the dreaded stretchy body parts, she went about checking the pain levels. I am pleased to report that once her little box of tricks “spoke” to my implanted little box of “tricks”, it was established that my switching on and off, general usage of the stimulator and recharging is all scoring full marks! Hurray.
Next the tricky part. Any chance of a retune? This was no problem and the external box turned off and then turned back on the internal box…..jump starting the battery back to life and automatically altering the sensation. The biggest difference is the feeling in the sole of my foot – it is difficult to describe, but the electrical pulses feel more rapid and “wider”. The pathway of the pain through my foot is so specific that I could draw it for you to see, so the area that needs to be covered by the neurostimulation is very specific and so very specific electrodes in the lead on the spinal cord need to be active. But how about getting some of that lovely electrical stimulation that knocks out the way my dodgy wiring sends perceived pain to my nerve centre – my brain – into my right hip and thigh??
Of course the proper response is that nothing can be altered for pains that haven’t been investigated – it wouldn’t be good to mask pain that is due to injury or a new illness. But of course in this case one bendy chassis is causing wear and tear on the bearings and axles, putting the tracking off massively. The biggest concern had to be keeping the pain coverage in my right side to the same level – it would be awful to lose the fantastic coverage i have. But with a little tweaking she managed to give me a little sensation in my hip and if I lean back into the chair (or better still lie down onto the electrodes) the strength of the stimulation increases. It doesn’t get rid of the pain or even mask it in the same way that it masks the nerve pain, but any little bit of relief this rust bucket will take!
So the bodywork may not have been replaced by a shiny, sleek sports model, but with a bit of fine tuning it is slightly more comfortable. (BTW the beach buggy above was Dunc’s first car, and whilst sparkly, not very comfortable!). Thanks for all the good wishes – really appreciated. Now I’m off to recharge my battery for a new week…..and in this case I assure you I am being literal, not metaphorical. Should take me a couple of hours to complete!
(BTW: any St Thomas’ pain/input patients out there – the booking system was changed last year and the nurses are no longer allowed to book our appointments. But since central bookings has taken over, quite a few of us have slipped through the net – hence why I had no appointment last year. If you have a problem call them or email the nurses at their catchy new address:
Tomorrow I go back to St Thomas’ hospital, London to the Pain clinic and it struck me that this is where my new life as a blogger began. Three years ago I was first seen in the Pain clinic for the start of physical and psychological interviews to assess my suitability for a spinal cord stimulator trial. Just over two years ago I became the recipient of an implant. So much has changed in this time.
The last time that I was seen – approx 20 months ago – I walked into the clinic and was able to report that the scs had made a huge difference to my pain but we made a decision not to try to link it in to my neuropathic bladder damage. Tomorrow the clinical nurse specialists might be surprised to see me enter in my wheelchair, albeit a smart burgundy number, rather than on my sparkly walking stick. They might be shocked to learn that my autonomic nervous system has become increasingly worse since the implant onto my spinal cord – merely coincidence, I couldn’t really say – causing me to regularly have severe dizzy spells, faints and difficulty controlling my body temperature. I did dislocate several joints whilst I was on the residential 2 week pain course so this wouldn’t be new, but the fact that my right shoulder is out of place more than it is in and the faints generally knock a few body parts out of alignment might raise eyebrows.
All in all I think we can safely conclude that the body is behaving more like that of an eighty something, rather than a forty something (no, my own kids….I have not yet hit half a century!). So it feels like time for a tune up……last week it was the cardiologist – heart still ticking, although the pipework could be in better nick! Saggy vessels were the delicate descriptors for the network carrying the blood of yours truly. Yesterday it was the turn of a new consultant – the upper gastro intestinal – to cast an eye upon this beauty. She deemed a camera necessary to check out the fuel pipes and investigate the pains and possible paralysis of the stomach. Something to look forward to. Next week there is a trip to the bone man – yes Mr Orthopaedic Shoulder Specialist is going to look at the dodgy joints, check the scan which will show a classic dislocation and hopefully come up with a solution to glue the arm permanently in place and all with minimum pain. I think there may be a visit to the rheumatologist on the cards sometime soon, but don’t want to be greedy.
So tomorrow I hope that I can have a tune up – maybe the frequency and bandwave of the stimulation increased and widened to cover my right hip and leg too. At the moment it covers the chronic, constant nerve pain in my back, left leg and foot – the result of nerve root damage in the lumbar spine. The pain in my hips is different and is caused by a mix of arthritis, recurrent dislocations and stretched ligaments/soft tissue. But the whole host of chronic pain types are all as a result of my Ehlers Danlos Syndrome, literally a pain in the neck that has gradually overtaken life, but no use whinging as my kids remind me daily! So when the nurses express surprise to see me so altered, it won’t be because the scs isn’t working – would I have it done again? In a heartbeat as it has given me a way to manage some of the pain.
But I am hoping that with their little box of tricks, that looks very like a mechanics electronics box for tuning a modern car, the nurse might be able to switch on a couple more electrodes, alter the band width, tune in some good music and drown out some of this other bl**dy pain. They might not be able to get rid of the rust, but will report back when I am wired for sound!
I came upon this review from Zec at Sat on My Butt blog and just knew that I had to share it with you – particularly those in the UK chronic illness community. You might remember that I reviewed a CBD oil last year and I have been interested in trying something but was unsure what might be comparable (the oil that I reviewed was sent from the States)….this could be it! Unfortunately we are currently funding our old dog’s
drug habit pain medication, and of course the family will vote that he comes before mum!! But this has been added to my list for Santa!
For the past three weeks I have been using the Medipen.
Medipen aren’t allowed to make any medical claims about their product, but fortunately. nothing stops me from doing that!
So what is a Medipen?
A Medipen is a Cannabinoid delivery device that vaporises the Cannabinoids that are in coconut oil, I am and have always been a non smoker and I have no problem using the Medipen.
The vapour is very smooth and doesn’t make you cough and splutter.
The cartridges contain 1ml of Cannabinoids suspended in a pharmaceutical grade Coconut oil.
What are Cannabinoids?
The Cannabis plant is made up from 114 different compounds, the THC is the compound that gives the psychoactive or high sensation people get when smoking cannabis.
The Medipen cartridges contain CBD, CBDV & CBG which do not give those sensations but they have been proven to help people with a wide ranges of health conditions.
Inside our bodies we have cannabinoid receptors, they are part of the endocannabinoid system.
It is now believed that originally humans would have gathered wild growing cannabis to use as food and our bodies use it to help combat many ills and conditions.
Cannabis has now been bred to contain more and more THC to give people a high and that has led to Cannabis getting a bad reputation and becoming illegal.
I received the Medipen starter kit that comes in a tin and contains The base of the pen that contains the battery and the brains and also a rubber tip on the end that works with touch screen devices.
It also contains a USB charger and a Medipen cartridge containing the Cannabinoids.
It really is foolproof, you screw on the cartridge, place the tip in your mouth and suck and that’s it,no on or off button or settings, it is ready to go at any time.
To read Zec’s verdict on the Medipen for his anxiety and chronic pain read the full post here: http://www.satonmybutt.co.uk/review-medipen/