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.
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.
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.
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.
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.
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.
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.
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
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!
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.
We recently had to return the power wheelchair we had on hire. It had been with us for the best part of a year and had quickly become a very integral part of daily life. It reduced my pain, dislocation frequency and enabled me to get out and about everyday. It was freeing. We’d hoped by the time it had to be returned that I’d have been seen by the local wheelchair service for an assessment as currently I dislocate my fingers while trying to push my manuel chair. However it’s a long waiting list and an appointment date is still a while a way.
In the meantime I’m reassessing how much activity I can do and what I do each day. My head deffinently believes I’m more capable than what my body thinks I am able to do. A lot of this week has been spent resting and trying to find a happy medium. However I’m also currently on week three of my period and I know that when I have extended bleeds I generally feel rubbish and my joints and muscles seem to be worse in general.
I’ve started introducing sleep hygiene into my night routine to help improve the quality of my sleep and to see if it improves how rested I feel. I’m trying to have no screens for an hour or two before bed. Instead I’m reading and crocheting. This has also given my mental health a little boost as well which is positive.
I’ve had a gyny appointment come through for the end of September, so not long to go now. Hopefully this one won’t get cancelled.
Today I received my first lot of maxfax injections in a year! These are to help control my recurrent jaw dislocations. Normally these are timed so they are six weeks after my last lot of neurology injections to help max the benefits from both. The pandemic put a bit of a pause to that.
It was a new Dr today who treated me, who couldn’t quite believe that despite looking fairly normal, upon exam my jaw was still out of place. So we opted to switch things up. I had the usual jabs along with some new ones. Hopefully we will see some improvement.
I’d forgotten how much Botox flu can wipe me out. So I’ve medicated up and I’m mentally allowing myself to slow down for the next few days to help recover.