November 2022 – Dystonia and Me

Archive, November 2022

Return to the Hospital

Posted on November 28, 2022 by dystoniaandme

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.

Archive, November 2022

Fridays Ambulance Call Out

Posted on November 27, 2022 by dystoniaandme

As the early light of Friday morning broke through the damp cover of night I lay in bed counting the minutes until my Drs practice opened. The pain in my lower back had been agony all night and I suspected my ongoing UTI had progressed. After a night of no sleep 8am couldn’t arrive quick enough.

By the time I arrived at my doctor’s for my 11am appointment my temp had hit 40.3c and I was in urinary retention, my heart rate and blood pressure were through the roof. I can vaguely remember being encouraged out of my wheelchair chair and onto the bed whilst they phoned an ambulance. Shivering with fever chills, and desperately tired. Three hours later I was in the back of an ambulance on my way to the hospital.

I don’t think I’ve ever seen A&E so busy. The staff were amazing and after quickly establishing my veins were playing hide and collapse they had an ultrasound out to guide them. They hooked me straight up to antibiotics for an upper kidney infection and told me urology would make me a plan.

Saturday morning three burly Urology consultants appeared at the end of my bed. “What would you like us to do?” The question caught me offguard. I’m rather used to staying quiet and listening so as not insult god complexes, or putting my thoughts across in a tonned down manner. When I explained I’d be happy to be guided by them, it was really refreshing as they took the moment to explain my options. I could that day under local anesthesia have a suprapubic catheter put in: this would involve a small incision in the tummy allowing them to put the catheter through and to the bladder. Alternatively I could have an indwelling urethera catheter and go home, to come back at a later to have the suprapubic catheter put in under a general. I chose the latter option giving them a brief explanation about my Ehlers-Danlos and how due to EDS you can pump me full of local but I’ll still feel everything. They happily accepted my decision .

Back in 2019 whilst pregnant with my daughter I’d agreed to surgery where they attempted to remove a large suspicious mole from my breast without pain relief or sedation due to the pregnancy. The local failed. I felt every cut. The team did their best to distract me but the whole thing was traumatic. I made the decision at the time to not put myself back in that situation ever again. So even though the suprapubic catheter is meant to be better long term I’m happy to wait a few extra days/weeks for it if it means they can put me under.

So why has this all happened? My guess is that it’s down to the Ehlers-Danlos. My bladder has been dodgy for well over a decade, it’s just recently sped up in its decline. I’m feeling a little emotionally up and down, frustrated mainly but I think it’s healthy to acknowledge that. I know this will all feel normal soon.

*On a side note if you use catheters and have any tips on making it more comfortable please get in touch!

Archive, November 2022

Motherhood and Pacing

Posted on November 25, 2022 by dystoniaandme

Being a mum is without a doubt one of the best, and most challenging, joys in my life. Whilst there is an element of predictability, there is also the beauty of their ever growing imagination. We never quite know what they will ask next or what game they’ll invent. It really is a blessing. Hearing my youngest call out in her sleep the other night “Sing for your treasure pirates!” is a memory I will treasure with a chuckle.

Last week my son and I found ourselves in the local children’s ward again. Luckily this time our stay was short. He had clung to me like a young monkey. The way children do when they’re feeling awful. He’s five now, and as much as I love holding him, especially as he’s usually so full of beans and always on the go, 13 hours like that took a physical toll. I knew better, but when our children are ill pacing goes out the window. It’s a week on and I’m only just starting to feel myself again.

We had found ourselves in hospital without much warning having been sent straight there by the GP. Normally I go armed with extra clothes, extra meds, books, etc. This time I just had my handbag. I will now always carry an extra day’s worth of meds with me.In the days after his discharge the fatigue was at levels it hasn’t been for awhile. My partner found me taking a break whilst getting ready for church on Sunday morning. I felt ridiculous but at the same time knew I needed to listen to my body

It’s a new balance I’m needing to learn to walk. In reflection I can see ways I could have helped limit the physical impact. For example I could have explained my conditions and asked if I could have had a small blanket to fold up to cushion behind my back where it was spasming etc. Hopefully this will help a tad next time.

You’ll be glad to know that although still on antibiotics my eldest is back to his bouncing about cheeky self.

Archive, November 2022

Declining Health

Posted on November 15, 2022 by dystoniaandme

“It’s your choice. Do you want to keep trying to cope with the pain at home, or I can send you up to the hospital?” I sat opposite my doctor, wanting to explode. Not at them. My doctor has gone all out over the last month trying to help me. I’m on week four/five of an infection which has in turn irritated my usual spasms, my pelvic prolapse which has been a problem for 3 years (and I’m still waiting to see the specialist) is causing its own issues, and I now have to self-catheterize daily. Hospital admission is tempting, but the local hospital isn’t that great with rare conditions, and someone needs to be here for the kids. I decided to remain home, where I know my meds wouldn’t be messed with and I could use heat therapy and a TENS machine too.

Week four going into week five of antibiotics

It’s something that I’m struggling with quite a lot at the moment, the sensation that my body is deteriorating at a rapid rate again. It goes through phases of this, its part and parcel of having multiple chronic conditions. Knowing that doesn’t make it any easier though. I recently made the decision to start having therapy again; struggling to accept new declines in my health is something I’m making sure to discuss.

My decline in health at the moment is mainly due to my Ehlers-Danlos, however my Dystonia is impacting this too. Ever tried using a catheter with hands that tremor? It’s by no means easy! I’ve not got a Botox date yet with the new hospital but I’m hoping they maybe willing to try injecting my hands so as to make this whole process a bit easier.

Archive, November 2022

First Neurology Appointment

Posted on November 1, 2022 by dystoniaandme

The nerves leading up to today’s appointment had been doubling with each sunrise. I was dreading meeting my new neurologist. After a decade under the care of Prof Wonderful, and have met more than a handful of neurologists with severe god complexes before I wasn’t feeling very optimistic. Whilst I knew that it was ridiculous to tarnish all neurologists with the same brush, I had met multiple neuro’s from this particular hospital before who had awful bedside manners. Previously they had refused to take me on as patient as they had deemed me too complicated at my first appointment. The second time they met me my symptoms were brushed under the rug with a quick “ah it’s most likely a side effect of your Ehlers Danlos” but didn’t run any tests to back this up. So I was hesitant to say the least, and that I would once again be swept under the rug.

The appointment had come rather suddenly as an opening slot had become available via their virtual neurology clinic. Whilst it meant that I still wouldn’t get my botox, it would at least mean that my foot would be in the door, my name on their patient list, which feels like a positive step forwards after several months of floating around in the neurology space waiting to be allocated to a hospital.

I was pleasantly surprised by the neurologist who met with me. He was open about his retirement plans and understood my wishes for continuity of care due to the complex nature of my health. It was agreed that I would be assigned to a different neurologist, whose specialism was Dystonia, he reassured me he would book me into the botox clinic as soon a space became available. I had expected there to be an issue when I brought up the frequency of my injections (6 weekly) as this is quite a small gap between treatments than what most prescribe. His understanding of the matter was not one I’d been met with before. Normally I have to really battle to get my Drs to understand that this treatment regime was one created out of necessity to keep me out of the hospital due to the severity of my Oromandibular Dystonia.

We had had a brief chat over where we felt my treatment needed to be going moving forwards as whilst the majority of my body is fairly well controlled my jaw is feeling much like a losing battle. I still have a lot of baby teeth as I don’t have the adult teeth for them in my mouth, which at almost 30 I’m pretty happy their still in place! However several are now painful and wobbly due to the battering they have received from my tremors, spasms, and dislocations. We know from previous experiences there is no point in wiring the jaw shut as the spasms are strong enough to break the wires, but further intervention in some form is needed. We briefly discussed today playing around further with the EMG machine to see if that can pinpoint better the areas needed to be injected and some surgeries we can try. These though will obviously be needed to be discussed again in greater detail face to-face.

Overall it was a very positive appointment. I’m still devastated not to be under my old neurologist, he really helped me not only accept my conditions but also reign myself back in when I needed it. He helped me to adapt to my new life and for that, I will be forever grateful.