Our wedding date is set for the end of next year and we couldn’t be more excited. The kids ask ‘how much longer” almost every day, and are very much looking forward to playing their parts on our special day. We have got well and truly stuck in to the planning and booking of our venues.
This is where my arsenal of equipment that holds my body together will come in handy. We will be splinting up my knees and ankles in the hope that I can hobble down the aisle on my walking sticks. I’ve currently got a Pinterest board dedicated to walking sticks in different shades of white/ivory/champagne so that once I’ve brought my dress I can match them. However if I have to roll down the aisle that’s fine too (it’s what I do every Sunday anyway 🤣 during mass), so I can always spruce my chair up with flowers.
One of the big factors for us is getting me through the day without a trip to A&E or an ambulance having to be called. Sounds simple really, doesn’t it? Yet it’s a very real possibility. I tire very quickly these days and my body goes downhill when that happens, so utilising my aids and working breaks into the day/sitting down frequently will be important. Having these planned in advance seems best for not running out of spoons* too quickly.
I’ve spoken to our photographer about my disabilities and he’s had experience with people with similar issues. Hes happy to listen and go off what I’m saying. If I’m doing well then fab, not feeling so hot then that’s ok too we can rejig positions. I was quite nervous about this conversation so this was a big relief that he was cool with it.
I’m ever so slightly taller than my partner which I am over the moon about as it removes all temptation to break out the heels I hung up years ago. I used to love love love a chunky wedge heel. But it’s just asking for trouble. So sensible flat shoes it is with good ankle support it is – to be honest I’d be quite happy barefoot but I think the church and the hotel wouldn’t be as thrilled. I’ll be gradually breaking these in as part of my EDS means my skin breaks super easily. It takes me months to adjust to shoes even when they’re a perfect fit without my feet bleeding.
Each passing minute, moment, breath, feels like a drawn out hour at this time of writing. By Botox was due at the end of January. It was scheduled for April. Thank Lord it was moved to mid March. My medication routine had kept me healthier for longer than I had dared hoped for, but now my little Dystonia alien is kicking my ass with vengeance.
My jaw has been dislocated for a full 24 hours straight now. It has been coming previously on and off before that. The aches in the joint and the building spasms told me all I needed to know. I’d adjusted my food intake to make sure I wasn’t aggreviating it, I was regularly applying heat packs, and doing basic physio stretches. On Tuesdays I sneezed and dislocated the jaw, and it came out again hours later while I was enjoy a nice brew.
I’m extremely lucky that while I was pregnant with Evie at around 9 weeks I got admitted to the gyny ward due to suspect Hyperemesis Gravidarum and kidney infection. The maxfax team came and taught my fiancé how to relocate my jaw to save me living in the A&E department trying to educate the staff. Them taking the time to teach Damon had a life changing impact as it’s dramatically cut down the amount of time I spend in A&E have it manipulated back in place.
The shear strenth of the spasms shock and terrify me. Despite muscle relaxants Dame has struggled to relocate my jaw today. Normally this would mean I need to take a trip up the hospital before it becomes worse. But honestly I don’t want to go. I know the drill, they’try twice, when it fails they send me by ambulance to Aintrree, the med students try and fail, I get scheduled for surgery, and then Dr. Godcomplex cancel the surgery because he doesn’t believe in Dystonia or EDS.
If you’ve made it this far through my foggy ramblings! Congrats 👏
Whenever I get ill with something like a cold/your more normal bugs, or as I prefer to call it muggle sick, my body always protests. Sunday I was feeling off and presumed I was having an ocular migrane, I get them often so didn’t really dwell on it. Alarm bells started going yesterday when I woke up with a temperature, sore throat, ringing ears and eye pain still. The lateral flow was negative so chalked it all up to an awful cold. After all I’d had covid a few months back and I am fully vaccinated.
It was a bad night of neck, jaw and back spasms. Upon opening my eyes this morning all I wanted to do was put pressure on them both. I recognized the pain. I had the same issue for almost six weeks following contracting covid last autumn. Sure enough this mornings lateral flows came back positive straight away. Which explains why my spasms have been playing up. My body is doing its usual protest, a way of saying it’s overwhelmed.
I’m feeling pretty run down but greatful to be vaccinatinated.
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!
It’s hard to know to where to start. I’m so tired from the painsomnia and I know that is partially responsible for my level of frustration, emotional upheaval and general anger towards this current situation. Focusing on one hour at a time seems to help.
Being very much limited in my capacity to move much is hitting me hard. Having finally found a medication that helped my Dystonia, then developing this prolapse and adapting to its limits feels like a slap in the face. I cannot empty my bladder fully due to it, which is resulting in bouts of incontinence with no warning, I haven’t been able to go the loo properly since Thursday last week and that’s causing its own pain. I move around with my thighs clamped together terrified of making it worse. There are 36weeks to go before the first consultant appointment.
Acknowledging that this hit my mental health is important. I was already in a bad patch due to ongoing hair loss causing anxiety. This new complication on top knocked me down, hard. I know I’m a fighter and will adjust with time. However it’s important to recognise that what I’m feeling is valid.
Before I sign off I want to touch on one thing; look beyond the filter. In the first photo above the filters has smoothed out most signs of exhaustion, my eyes almost look sparkling and awake. It’s a nice image with little hint of what’s going on. This is an image I would post on my personal profile or my author page; it doesn’t reflect my current issues. The second photo is filter free, the bags under my eye are clear to see and the dark rings obvious. The puffiness in my face from my meds hasn’t been smoothed out. This I would post on my Dystonia and Me page. It is a truthful image.
I never posted either photo (until now). It got me thinking about the need to act ok when I’m not. It’s quite a damaging reality. We see it everyday. Just some food for thought. Personally I’m going to stop using filters, see the reaction to truthful imperfections and struggles. Live my truth. (unless me and my daughter are using it to be bunny’s)
I woke up the other week with a pain that felt slightly familiar but I couldn’t quite put my finger on it. I lay in bed gently testing my muscles and noting what was spasming or dislocated. After all it’s not unusual for me to wake up with a dislocation here and a spasm there. Satisfied that no major joints were out of place I got up. Then it hit me.
The pain in my vaginal area brought tears to my eyes. I immediately clamped my thighs together. I can only describe it as feeling like my uterus was plummeting out of me. A quick check with a mirror confirmed what my nerves were telling me. Prolapse. Again. This time far worse.
Ive been back and forth to the drs multiple times since that morning. Honestly the difference between seeing a male Dr and female Dr is gobsmacking. When I saw the female practioner I got asked how I’m managing, offered pain relief, and my concerns listened to. When I spoke to the male Dr he dismissed my pain levels telling me that he couldn’t understand it as a prolapse shouldn’t hurt – never mind the fact I also had an Infection in my uterus at the same time. He gaslighted me completely.
I’ve been researching like a madwoman since I started this journey in desperation to make sure I am referred to the right department as quickly as possible. 38 weeks is the current wait time to our hospitals urogynyolgical clinic. 38 weeks. I can’t wrap my head around that figure. Meanwhile I’m sitting here with my prolapse literally outside of my body causing a significant amount of pain.
Ive been pretty upset, a lot of tears have been shed. My mental health has not been great and I’ve not really got my head round this yet. I know that the prolapse will be due to my EDS. I can accept that. What I’m finding hard is the fact I can barely do more than a few minutes movement before needing a long rest due to pain.
Im not sure how long this journey will be but I’ll keep it documented. I’m sure this reads as a ramble but it helps me to get it all written down.
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”.
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.
Botox for me is life changing. Without it I would be hospitalised on an NG tube, unable to talk, swallow, eat, or drink. I’ve ended up in that exact situation previously. It’s unpleasant to say the least. I’m fortunate enough to receive Botox from my neurologist every twelve weeks and then a top up at the six week mark in the cycle from my maxofacial team to keep my jaw going.
I am extremely fortunate to experience very little in the way of side effects. Generally speaking I get ‘botox flu’ for a few days after and a flare in my complex regional pain Syndrome symptoms in my arm. This time though my mouth has been weakened slightly by the Botox. It’s not physically painful in anyway at all, it simply means the corners of my mouth are dropping.
At first I didn’t notice it to much, then I was hyper aware. I found myself wanting to be in pictures as little as possible as I knew I’d fixate on the turned down corners of my mouth despite the focused effort to smile. I was finding myself deleting photos of myself and the kids, myself on days out etc, over something as ridiculous as an altered smile.
It’s not as obvious in both photos above, but the fact I’ve kept these picture is a big step forward. I started to think about the example I was setting my children. It was not a healthy one. I do not want them to grow up thinking that we should scrutinize photos for imperfections. Photos have always been for us a treasure trove of memories, to help remind us of the many memories we have made together. Both my kids love getting our photo albums out to look at and this something I hope long continues.
My altered smile, is not permanent, however it is a reminder that I am one of the lucky ones who receives treatment and responds to it. That is something to celebrate not to fixate on. Whether it stays droopy or returns to normal I’ll keep snapping photos of our days out making memories. After all it wasn’t long ago I thought Dystonia meant the life I have now would be impossible. Forever thankful for Botox injections and medication.
As I have mentioned previously following a discussion with my neurologist I tried a couple of different medications to see if we could get a better handle on my spasms. In particular the spasms around my jaw as these cause me significant issues with pain, dislocations, and make it next to impossible some days to relocate my jaw; I’ve had the joy previously of coming round from an operation to have my jaw relocated under GA, only to dislocate when I wake up due to spasms, and have my surgeon coming running over to put it back in and bandage my jaw up. Not a pleasant experience.
Trihexyphenidyl is the medication we have added into my daily regime and it has made a huge difference. Little things like I can brush my teeth now with an adult sized toothbrush rather than a children’s one are possible, and instead of dislocating my jaw by brushing my teeth, my jaw is just in a small spasm and achy. My son commented the other day on the fact that my face isn’t wonky all the time and asked if my Jaw Dr had fixed my jaw. We had a quick chat about mummy’s silly brain and moved on, but for me that showed just how amazing this medicine has been.
I saw my neurologist the other week and he has suggested increasing the dosage further as I am currently not experiencing any side effects. I’m waiting to receive a copy of his letter to my gp explaining that I have the go ahead to do this at my own pace, so we can see just what improvements we can get.
Right now, thanks to lovely female hormones, I’m sitting here feeling quite sore all over as my body goes downhill each month due to the fluctuating hormonal changes. I’ve had several subluxes today in shoulder which have in turn aggravated neck spasms. Normally I’d be quite grumpy about all of this, and yes I’m not exactly thrilled, but having the Dystonia side of things more controlled doesn’t half make coping with the EDS etc, easier. Everything just feels that little bit more manageable right now, and that’s fantastic.