Category: January 2018

Posted in Archive, January 2018

You’ll learn to deal with the pain

Posted on by dystoniaandme

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.

Posted in Archive, January 2018

Overwhelmed But That’s Okay

Posted on by dystoniaandme

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.

Posted in Archive, January 2018

Here we go again

Posted on by dystoniaandme

I don’t even know where to begin. My head is all over the place and honestly I feel more than a little bit miffed with my body. Here we are at the start of another year and I’m already waiting tests results for yet another diagnosis. Yup you read that right ANOTHER diagnosis, not an alternative or differential diagnosis but another brand spanking in all its inconvenient glory. In 4 to 8 weeks I’ll have my answer and until then I am meant to carry on as normal.

Usually that’s doable but right now I feel pretty defeated. I know this feeling will pass and that I will cope just like I always do however what I am currently experiencing is consuming, depressing and suffocating.

So here we go again. Distraction techniques in full swing and disney soundtrack blasting.