It’s Dystonia awareness month and across social media it’s amazing to see so many people taking part. This year I decided to switch my fundraising activities up a little bit and do something different and unique.
I’ve put together a short poetry collection, Freefall Dysfunctionally Me, from which all royalties will be donated to Dystonia UK on an ongoing basis. The collection covers multiple aspects of life with Dystonia such as job loss, friendship loss, Relearning to love ones self, being a disabled mum, Government’s view on those with disabilities, medical trauma and much more. My aim was to write from my experiences and not sugar coat anything. The odd one is more upbeat, cheerful and self accepting; an accurate depiction of my rare days of self confidence.
The collection is currently available via Amazon but comes out globally in stores from the middle of the month .
When I stumbled across the article in the Guardian during the early hours of Saturday morning I was horror struck. “Sajid Javid calls for patients to pay for GP and A&E visits” the bold headline all but shouted. The fear that boiled up instantly is one I imagine Sajid Javid is not familiar with. Fear of what might happen to you if you cannot access the medical help you need. A familiar fear. Rumours have circled for years that the Conservative government wants the NHS to fail so they justify privatising it. It’s a statement we’ve all heard, and although it’s one I’ve always dismissed as a rumour it’s still brought that stomach churning fear with it.
Could I afford my life changing treatment if it was private? No. Would I be able to afford my almost weekly GP appointments,a necessity to lower my hospital admissions? No. Would I be able to afford my multiple monthly A&E trips for my regular dislocations/spasms/seizures/etc? Nope. Not a chance. Would I have a hope of affording inpatient care – I was admitted twice in November, once in December, and twice more in January. There isn’t a flying monkey of a chance. That’s before we factor in operation costs, ambulances, outpatient appointments etc. It’s a terrifying prospect.
I’ve experienced life without my regular injections and daily meditations, I end up hospitalised on a feeding tube, blind due to eyes spasms, body twisted in spasm and jaw dislocated. It’s hell. It’s an experience I wouldn’t wish on anyone. Yet it’s what I would live with if dismantling our NHS happens.
Yes right now Sajid is only talking about GP and A&E fees. But once we allow the government to open that door will we be able to prevent a tidal wave of change from crashing through? For many just those two charges would be too much at a time where we already have people relying on public warm spots due to the cost of living crisis. I feel his suggestion will simply limit access to our incredible NHS, further isolating the vulnerable and the disabled.
It’s been a long day. I arrived at the walk-in unit before 8 this morning in agony and with an obvious infection in my incision site.A half hour later I was on my way to hospital being sent straight back to the surgical assessment unit, ive since bounced around the wards for a few hours as they are full to the brim.
My incision site has been leaking pus and the pain I have internally can only be described as a scaping and burning sensation. It’s been leaving me in tears unable to move. The member of staff I saw was lovely. Quickly established that I needed my suprapubic catheter changed to a new one due to the infection and did so. Despite the morphine I struggled with the pain. The reg came to check and make a plan “once the infections gone you’ll learn to adjust to the pain”. A sentence that seems utterly barbaric to utter to a woman shaking in pain, clearly unwell, and whose just expressed the severity of the pain she’s in.
I count my lucky stars for the team member who was in charge of looking after me today. Who could see how much I was struggling and did everything she could for me.
I’m now waiting for a bed on the ward where we can get antibiotics started and try to get my pain under control.
In my head life after the suprapubic catheter insertion was going to return to normal pretty instantly. I didn’t really factor in healing time (which is prolonged due to my eds), or think much about the lifestyle adjustments I was going to need to make. Typical me really. Full speed ahead mindset with no allowances for my health; you’d think I’d be a dab hand at this by now.
The first 48 hours or so my mindset was pretty good. I was just so relieved to have got through the operation without any major complications and was still dopey from the morphine. Yesterday and today have been a lot harder. The bladder and urethral spasms have been constant, the insertion site has leaked frequently, and the scrapping sensation in my bladder leaves me wanting to remain motionless. I was discharged with very little information on how to care for the catheter or what to expect/, how to manage. Simply we’ll see you in six weeks.
We discovered quite quickly that even my usual clothes were no longer suitable. My leggings which I live in are simply too tight for the bag to go underneath without compressing it. Whilst I could wear the whole system on the outside, I’m not there mentally yet, to brave being out and about with that on show yet is daunting. These probably all seem like trival problems but they add up.
I know once all the pain has settled down and we find a medicine to help with the bladder spasms etc I will feel better about it all. I just wish I had been more informed on what to expect and what to do once I was home. On a more positive note I am so thankful for the support group on Facebook that I found who have been a treasure trove of information for me the last few days. I have ve always found comfort in information so this group has been a saving grace.
I have loved snow for as long as I can remember. I’m a winter girl. It lights a spark in me like nothing else. My eyes are forever scanning the grey winter skyline in search of signs of an incoming flurry.
It doesn’t matter that the freezing bite in the air adds another layer of pain to my joints, or the kiss of the snow brings on more spasms. All of that is worth the delight in hearing the crunch of the snow, the fits of laughter of my children as they attempt to stay upright (whilst their dad dramatically falls in the snow), watching as they all run ahead in a cascade of ice, snowballs , giggles and shivers. It brings me such happiness.
Our little exploration may have exhausted me, but it was worth every single moment.
Well I’m back. In the hospital that is. After a short escape and my catheter spectacularly failing I was instructed back to return to the hospital. I was ushered back to the ward and greeted by baymates from the previous day. The nursing staff quickly whipped out the original catheter and placed a larger one in.
Whilst the original one was by no means pleasant, I’d got through the insertion with barely a grimace having been used to catheterising myself daily anyway. This second one was something else. It took several painful attempts to insert, immediately I found myself experiencing a burning sensation that left me in tears and trying not to move so as not to aggravate the sensation. The staff reassured me it should pass.
This morning, after no sleep thanks to pain, the consultant ordered medicine to ease the bladder spasms, assured me it would help and then I’d be discharged. It took 12 hours for the medicine to come to the ward, I’ve only just been given it. I have spent the day begging for relief. The bladder spasms I could deal with, the bypass round the catheter I could deal with, the burning sensation in the urethera? That I couldn’t cope with. The searing relentless sensation frankly overwhelming. After a day being inconsolable the nurses removed it. The relief was immediate. I’ve no idea why it happened when the first one was ok. They are now monitoring to make sure I don’t go back into retention and can cope with intermittent catheterising in the meantime.
The indwelling catheter was meant to be a solution until they could do the op to fit the suprapubic catheter. Hopefully I’ll be able to manage without it until then.
Dystonia and Me 