Tag: blogger

Posted in Archive, February 2023

Hide & Seek…

Posted on by dystoniaandme

What? You found me already?! Dang you’re good. Though I suppose being back here in my second home isn’t really the best hiding place. But hey I had you for a minute there 😉

All jokes aside, I was admitted last Friday back to my local hospital. It wasn’t a surprise. I’d been going down hill quickly since my last discharge; unable to keep down food, meds or fluids for more than a few minutes at a time. I was feeling incredibly unwell.

My local practice has an amazing Advanced Nurse Practitioner (ANP) who takes fantastic care of me. She started doing regular tests to monitor me. My renal function was dropping fairly dramatically despite valiant attempts to sort the issue nothing helped so off to the hospital I was sent and have remained.

So far I have remained my usual medical mystery self. A Zebra to the core. Tolerating anything orally for generally mere minutes at best. Whilst urology have ruled things out on there side, my symptoms remain just as severe. Referrals have been made to the inpatient dietitian and gastro team so here’s hoping they’ll turn up at some point and they might have some fresh ideas..

Posted in Archive, November 2022

Declining Health

Posted on 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.

Posted in Archive, may 2022

Reintroducing Me

Posted on by dystoniaandme

I’ve had a few people on the Facebook fan/follower page for this blog asking for more information about myself recently. After coming up to ten(!) years of blogging and activism I feel it makes sense to post this small reintroduction for those who have joined me on my journey more recently.

First off my name is Rebecca, but please call me Becca. I’m 29 years old and not quite sure how I’m turning 30 this year when it feels like I only finished sixth form a year ago. I grew up in the south of England in Hertfordshire, and now live in the North West with my Fiancé and our two beautiful children.

In 2012 I became ill with Dystonia, untreated chronic Lyme disease, and worsening classical Ehlers-Danlos syndrome amongst many other things. I was bed bound for a very long time and took to blogging as a way of therapy, advocating, and connecting with others in similar positions. I’ve come a long way since then thanks to getting my Lyme disease treated, along side getting a medication routine that has helped control my other symptoms somewhat.

Back in the early days when I didn’t have much control

I have continued to blog on here, do lives on facebook, and advocate in various other ways as life with chronic illnesses is never the same. Even now when it’s drastically different from when I first became symptomatic there are still occasions where I have to fight for help. Without access to the medication I take daily I would be in hospital constantly.

Blogging has helped me feel less alone in this journey. I hope it’s helped those who read these post too.

Posted in April 2022, Archive, September

Friendship with Chronic illnesses

Posted on by dystoniaandme

Living with any chronic illness brings with it by nature a certain amount of unpredictability. For me that has meant no hour is the same from one to the next, let alone one day to the next day so forward planning always has to come with the understanding that extreme last minute cancellations are not just possible but likely especially when going through a rocky patch with symptom management. Part of pacing is actively choosing where to rest and cut back and sometimes that means staying home. A fact many healthy people forget. It results in people viewing me as unreliable/flakey/lazy and as a result many friendships have been lost over the last decade.

When I first became ill the isolation was deafening. It’s quite astounding how loud the silence is when people who you thought were your friends disappear when life gets hard. At the time I was confused and angry. Now I’m grateful, it showed me who my true friends were and ten years on I’m still very close to them and look forward to our reunions.

Recently I’ve gone through another bad spell. I’ve been able to do less than previously, I’ve cancelled multiple plans last minute despite my best efforts. But between my general chronic illness and complications caused by new issues my daily activity tolerance /spoons has been appalling. Basic activity wipes me out. Now this would have been devastating to me previously but now I’m just proud I’m listening to my body and learning where to cut back. I’m not going to lie it’s still upsetting losing friends but it’s not having the impact that it once would have had. I’m grateful to the community of online friends with chronic illnesses I’ve built rapport with whose understanding is everything.

Posted in Archive, march 2022

Reflecting on Side Effects

Posted on by dystoniaandme

I’ve not had to resort to Lorazapam this week for managing my jaw spasms/dislocations (yet). So far my usual meds and my Dr ordered bandage support, are doing the job along with Damon relocating it when needed. I hadn’t realised just how much the Lorazapam had been affecting me until it started to work its way out my system.

Now this isn’t a surprise. Clonzepam and Diazepam are listed as allergies for me as they cause psychotic reactions when I take them. It seem to be a family of meds I don’t get along with but unfortunately need at some point now and then unless we find a better alternative to turn to. This time it was like someone had extinguished all hope. Even though my Dystonia is well controlled these days, the fact that my Ehlers-Danlos is getting worse seemed unmanageable. Crushing. Uncontrollable.

Now that it’s out of my system I can see how much of an affect it was having. Yes my EDS is on a downwards spiral at the moment, but we’re adapting and I am blessed with a supportive Fiancé and family who are helping me. My life is very much one full of hope and love. It’s helpful that I have my blog to turn to read to myself on bad days.

Botox is on Friday which I’m much looking forward to. I cannot wait to take these bandages off.

Posted in Archive, February 2022

Saturday Spent in A&E

Posted on by dystoniaandme

This morning was meant to be normal. For us that meant breakfast, chair yoga, meds, get the kids ready for their football club and rush out the door. Then it quitens down from midday. We do homework, see family, and enjoy nature. Today life had other ideas. Damon had already tried to relocate my jaw several times with no success before the kids football. By the time we were on our way home I was crying and asked to be dropped at the hospital.

I knew in myself that this was the right call. I don’t get upset over pain easily. If I’m like this then I need to be seen. Despite being rushed off their feet I was called through and quickly wheeled in to resus very quickly. The reason for this being that jaw dislocations can pose a risk for compromising ones airway. Normally they don’t bother x-raying me, but today they did. A number of drs were shocked at how bad it was, and that I’d let it stay like that since Wednesday.

The doctor looking after me wanted to try a few different methods before resorting to sedation. So a wad of tongue depressors were inserted into my mouth for half an hour to attempt to tire the muscles. Personally I don’t find this helpful, it just hurts, but I’ll do what I’m asked if it gets me treatment that I need eventually.

In the end they did have to sedate me. The Dr told me after that it was a extremely strong spasms pushing the jaw out and it was very difficult to relocate. The first time they got it in the jaw dislocated again immediately. Once they managed it for a second time they quickly bandaged me up to encourage/help support the jaw to remain in place.

I’m now home feeling worn down, emotional, bruised and tired. I’ve got to remain bandaged for a while as it settles and start being more conscious of my jaw movements. Not the sort of headwear I’d been planning on wearing to church tomorrow but heyho. Got to keep laughing.

Posted in Archive, January 2022, September

Day to Day Management

Posted on by dystoniaandme

No day is ever the same when living with chronic illness. The routine may be vaguely the same but each day revolves around adapting to what symptoms are presenting that day and the severity of them in the moment. What may be rather bad in the morning may be insignificant in comparison to another symptom by midday

A good example of this is today. Sundays are always our family rest days. We go to church, sometimes have family to us but generally speaking we are at home together. Now I was already shattered after a bad night sleep with nerve pain in lower right leg and lower back pain. However upon getting up my neck spasm started pulling my head down towards my shoulder. It’s a particularly nasty spasm that’s hard to break. I have a percriped Aspen collar for when my neck does which I alternate with wearing a TENS unit and a heat pack.

Picture of me ready for church wearing my Aspen collar to been help support and straighten my neck

I’ve not had to wear this collar in a while. The overly nervous me did my best to disguise it with a scarf as we sent out for church. It deffinently took some getting used to wearing it out and about and learning to ignore the second glances once again. But it’s worth to help ease off the painful spasms somewhat.

Off to church. Scarf ‘hiding’ my neck support

My Botox appointment is extremely late this time round having being schedule for almost six months instead of three. Whilst I’m hoping for a cancilation to come up, I am in the mean time going to ask my general practitioner to allow me to my Trihexyphenidyl untill I’ve had my injections

Posted in Archive, December 2021

Waking Up Blank

Posted on by dystoniaandme

Staring up at a pair of eyes, a mouth moving above me, making a sound that honestly I don’t quite understand and I don’t like the noise. The light is too bright. I just want to close my eyes and sleep. I like sleep. I’m tired. It’s too loud.

I open my eyes again. The words from above demand it. Ah the eyes have a name. I recognise my partner. Why won’t he let me sleep. The floor is hurting me.

I need sleep.

More noise. I don’t like it. I want to shut my ears. Turn the lights off. Cocoon my body in comfort and warmth. My body doesn’t feel like mine. It’s clumsy and not easy to move. It hurts.

***

When I come round there’s no telling how long it will take before I’m back in the room so to speak. The amnesia affect can last an unnerving amount of time. It often takes multiple conversations before I’ll retain information. So my fiancé will have to repeadedly inform me that I’ve had a seizure. I’ll get upset and he will calmly explain what’s happened. 1) has he had to phone an ambulance 2) what medicines he’s administered 3) how/where I am 4) any obvious dislocations that need addressing 5) ask me (if I’m with it) how I’m feeling and what I need.

I had a bad one the other day. I fell during it and hit my body darn good. Four days on and in still in pain. I came to bed early tonight as I couldn’t bear my leg pain anymore and need to lie down. My neck feels like I’ve been hit by an iron bar.

I’m grateful that they are more controlled in comparison to when they first started. But boy do they hit me something rotten when they happen. Heat bags are my best friend at the moment!

Posted in Archive, September 2021

‘Learn to live with it’

Posted on by dystoniaandme

After over a year of my follow up gyny appointment being rearranged and cancelled repeadedly by the hospital due to Covid, I finally saw the consultant. I arrived with high hopes, a notebook full of the requested data they’d asked me to log, and a very grumpy daughter who would have preferred we’d stayed on the bus.

After reassuring staff that I’d contracted Covid at the start of the month and hadn’t escaped isolation, they took my temp which was border line high. Feeling thankful that a quick round of begging and reassuring them that I felt fine, I was allowed to stay. Two hours later, I was seen with grumpy toddler who was vocalising her unhappiness in tow.

Normally when I have a female gyny the appointment goes slightly better. I explained that my periods were getting worse 48 days long on average but 73 was getting more frequent. That they left me physically sick and due to the change in hormones increased my eds symptoms. She brushed it to one side.

“You will have to learn to live with it”. I’m pretty my face was a picture. My emotions were not in check as I was desperate for this appointment to go well, having last time discussed albation with me. Meds are no option for me due to my EDS, I understand that, hell we had even tried that. I queried the more radical surgical and was told not untill I’m forty, at the moment I am 28.

I can’t get my head around it really. I’m lucky to get more than two weeks between each cycle. It leaves me in pain, sick and exhausted. But yeah sure “learn to live with it”.

Posted in Archive, September 2021

Covid-19 has arrived in our household

Posted on by dystoniaandme

Toward the end of last week our youngest woke with a fever. She didn’t have a cough, a runny nose or anything that particular screamed that it could be Covid-19, nor were we aware of anyone that we had seen recently who had developed it. So we were not particularly worried. However we arranged for her to have a PCR test as govt guidelines list a temperature as one of the signs to watch for. We didn’t expect a positive result, thinking instead it was far more likely to be a normal cold. After all the kids seem to have colds constantly. Less than 24 hours later at 1am in the morning my phone buzzed to let us know we needed to isolate. She had covid.

We tried our best to keep the anxiety at bay. Both myself and my partner are fully vaccinated, having received our vaccines at the start of the year. Yet after shielding for so long, and reading up on the virus over the past 18 months on the many different issues it can cause, it was hard not to worry. Both my son and I were shielders. Stefan, tested positive two days later. Whilst he has been undeniably feeling rotten and suffered more than Evie, he has luckily coped far better than we expected and is now seeming more like his cheeky self again.

We thought that we may have escaped catching it. Almost a week went by and then Damon tested positive. I was already isolating away from the rest of my household to try and avoid catching it as I had developed sinusitis which my body was already struggling to cope with. At my partners suggestions I was feeling worse rather than improving on my antibiotics I took a lateral flow test. The test result line appeared in less than twenty seconds. So off we went for a PCR again, which soon confirmed what we all ready knew.

This extremely short blog has taken me nine hours to write – ridicules I know. The fatigue I am experiencing is unreal I keep falling asleep while writing it despite being sat up with laptop on me. My body is not happy with a mirad of symptoms between dislocations, nerve pain, fatigue, spasms, no smell and taste, itchiness all over, breathlessness and spams on the left side of face which feels is as if it is determined to detach itself from my skull and be on its’ merry way.

My apologies for not getting round to live on facebook today. I needed to sleep. Hopefully tomorrow if I am feeling up for it I will do but it will depend on how I’m feeling.