disabled – Page 2 – Dystonia and Me

Archive, January 2021

Welcome to 2021

Posted on January 1, 2021 by dystoniaandme

2021 has arrived! We rang the new year in a quiet manner, a nice drink, a dislocated thumb and an early night after realising we were out of bandages (and spasms were forcing my thumb to remain out). I hope all of you had a lovely NYE and are healthy and safe at the start of this new year.

So what does 2021 hold in store for me?

As you may know from my facebook page I have set up my own holistic health coaching business which is designed to help people who are disabled/dealing with invisible illnesses. Holistic Health coaching is a partnership that will empower them, pin point problematic areas and find realistic tools to help improve quality of life, improve pain management, mental health wellbeing, and more.

Dystonia & Me Holistic Health Coach

Enabling others to improve their quality of life is a passion of mine. My own struggles in that area, along with fighting for help with mental health, pacing advice and more stuck me as how much holistic health coaches are needed. I know that I could have benefited greatly from one in the beginning. I look forward now to helping others, for anyone interested you can contact me here https://www.facebook.com/DystoniaandMeCoaching/

Archive, December 2020

International Day of Persons with Disabilities 2020

Posted on December 3, 2020 by dystoniaandme

The theme this year is ‘not all disabilities are visible’. This is stressing the fact that not every condition is immediately visible; according to the WHO report roughly two-thirds of people with a mental or neurological disorder will put off going to a doctor for help largely in part due to stigma, discrimination and neglect. As someone who has very much been on the receiving end of this trio when it comes to living with multiple neurological conditions, this comes as no surprise to me.

Looking at me as I am right now, curled up on the settee trying to not make to much noise so as to not wake the kids, you could be forgiven for not knowing I had a disability; even if your keen eyed and spotted my odd eyes you wouldn’t know that my sight was impacted and would be unlike to think too much about it. However even when you can spot my spasms or a dislocation, you cannot see my brain fog, my sensory loss, the neuropathic nerve pain, no one can see fatigue fight, the pain induced insomnia, the sixty odd dislocations a day and so much more.

I love talking with young children about my disabilities because they don’t hold back. “How does your chair work?” “Can you get upstairs?” “Do you have to put you your chair in the bath?” The look of fear on the parents faces as they worry that something not deemed politically correct may be asked is what I find disheartening. Without these beautiful minds being curious how can stigmas be fought against, broken down and normalised? This should be praised and encouraged. I appreciate that not everyone will want to be asked, but you’ll be surprised by how many people are more than happy to discuss these things.

Disabled people, whether the condition is visible or not, physical/mental/learning or otherwise are still people. Next time, pause, maybe ask a question, you could be amazed at how it opens your eyes.

Archive, December 2020

Disability Representation

Posted on December 1, 2020 by dystoniaandme

Representative. That word means so many things these days. We are always on the look out for something or someone that represent us in someway that we identify with. It’s been a long time since I stopped feeling that word was applicable to me anymore simply because as much as the world has made so much progress accepting disabled people there’s some pretty ridiculous hold ups too.

In politics there’s lots of loud, worringly not always up to date privalged folk making decisions that impact the likes of you and me. I always dread when they discuss the NHS or disability benefits and wonder how much time they’ve spent speaking and really listening to its core users. I’ve written many times and often been disgusted by the response back which has so inadequate they’ve not even referred to my letter remotely accurately.

In fashion I struggle to find clothes that don’t physically injure me when putting them on. I’d love to see more disabled friendly clothes hitting the stores at reasonable prices. For those of you thinking just avoid the clothes that cause injury I do for the most part, but I haven’t found a bra yet that I can take on and off without dislocating.

Councils; I am honestly curious when you design pavements, who decides on drop curb placements? As a wheelchair user, with brain fog more days than not, I have to try to remember the best wheelchair friendly routes. These often involve laughable detours. I’ve been debating starting a ‘The disappearing Dropcurb album’.

Film/TV. All I’m going to say on the subject is start hiring the talented disabled actors that are out there for roles, rather than able bodied household names. You have no excuse, make the adaptations needed to facilitate.

Finally I don’t expect to see representation of myself everywhere, that’s not exactly what I’m getting at. After all one of the beautiful things about human life is our differences, our uniques, our quirks. However that doesn’t mean that we shouldn’t address the issues I’ve raised above and as we’re heading into 2021 these really should be non issues by now.

Archive, Novemeber 2020

The Elephant

Posted on November 29, 2020 by dystoniaandme

I live with an elephant in the room; it comes with me wherever I go. Some people don’t mind the elephant, some have one of their own, others have a dislike for these elephants. It’s not always clear as to why. Maybe it’s worry, perhaps lack of understanding, and sometimes it’s ignorance.

Learning to accept my elephant of many names was a task that took great strength and many many years of learning to love myself all over again. I’m a sensitive soul; when my elephant upsets others it’s hard not to be offended. But I cannot change what I am, nor the diagnoses attached to me, or the symptoms that are ever present. Therefore the elephant is always in the corner. Sometimes small, sometimes big, sometimes putting on quite the performance.

However, I am who I am because of the path my life has taken. Disability has taught me a lot about myself, and it has opened my eyes to the need for self advocacy in a world that is a far cry from being disability friendly. The next time you are in a room with an elephant, address it, embrace it. Disability elephants are not scary things.

Archive, Novemeber 2020

Local Anaesthetic and Me

Posted on November 14, 2020 by dystoniaandme

When I was 17 weeks pregnant with my daughter I underwent surgery to remove a mole on the underneath of my right breast that had early cell changes. Due to the fact I was pregnant and it was a relatively short surgery they didn’t want to give me a general anaesthetic, so decided a local would do. Unfortunately my Ehlers-Danlos means I have no response to local anaesthetic and felt every cut, and every stitch. The whole process was rather traumatic and I’ve worked hard at trying to forget it.

I was admitted to my local hospital a couple of days ago due to worsening symptoms in my eye and leg. Due to this it was decided last night to bring my lumbar puncture forward to that evening. I explained that local anaesthetic does not work in the slightest for me. They decided to give me a double dose in the hope it would work; it didn’t, which I expected, maxfax team has tried injecting several times this amount with no effect previously. Now lumbar punctures are known to be painful anyway, so to know I was having one without effective pain relief was nerve wracking to say the least.

It was one of the most agonising experiences I have ever had. It took multiple attempts to place the needle correctly as they found the spaces inbetween the spinal collum to be be extremely narrow. It’s been just over twenty four hours since and I’ve struggled to move. My whole back is in horrondous pain, taking a deep breath or swallowing liquids really seems to agreviate it. I’ve also lost sensation over my waterworks which is concerning. I’ve spoken to the consultant but everyone’s answer over this is that I need an MRI, which apparently is booked but no can tell me a day or time.

I’m missing my kids loads but I know that being here is where I need to be. If this helps put a piece of the medical jigsaw in place and leads to better management that can only be a good thing. Just got to take everything one moment at a time.

September

What Can I Do For YouToday?

Posted on October 27, 2020 by dystoniaandme

What can I do for you today? It’s the standard greeting I find I’m met with at every doctors appointment, no matter the speciality. Perfectly poliet, open ended so therefore inviting me to dive in to the promblem that has brought me to their office. Expcept lately that is not how that questions makes me feel, it leaves me biting my sarcastic answer off of my tongue. Fix me, take my pain away, how about just stop my constant deterioation please and i’ll make do as I am but please press pause in the meantime. Let me correct myself, it’s not sarcasm, it’s truth, it’s honest words from a scared vulnerable person who wont utter them because I know the reality is the Drs are trying but their isn’t much they can do.

I was diagnosed yesterday with Trigeminal Neuragia, along with being informed they no longer expect the sight I’ve lost (the majority of it) in my left eye to return; I can see blurry outlines but I cannot work out shapes or distance. It was a bit of a hit emotionally as whenever I have had Optic neuritis before my sight has recovered fairly well, however this has been going on for a while now and if anything the pain has gotten worse behind my eye, it is incredibly intense. I’m trying not to dwell on this too much while we await my Evoked Potential results and wait for a date for my lumbar puncture test. Hopefully these tests will shed some light as to what is going on currently.

In the mean time I feel much like this blog; I am all over the place, one minute quite happy dealing with things as they come, the next frustrated that despite almost a decade of chronic illness a level of normality is yet to be reached. I’m still fighting against the current of deteriation. It may be as useless as trying to swim the wrong way around wild rapids but it helps to know that I am trying to do something to counter the every growing pill box.

Wednesday Video Live

Video• Posted on October 14, 2020February 24, 2022 by dystoniaandme

Archive, October 2019

Full Body Dysfunction

Posted on October 17, 2019February 24, 2022 by dystoniaandme

I had really debated whether or not I would post this blog. As you will know over the last 7 years I have strived to share the ups and downs of my journey with you all in a brutally honest fashion. However what I am experiencing right now is something I am finding to be increadibly difficult to deal with and awfully humiliating at times. However as I have found in the past that ripping the metaphorical band aid off and sharing bluntly with you all to be rather helpful I figured I may as well start at the beginning.

I shall try to keep it brief. About three weeks ago after several days struggling with a dislocated jaw and severe spasms to the point I couldnt eat or drink I collapsed in the kitchen. The resulting head injury leading to an ambulance needing to be phoned. Several seizures later I was whisked off to resus. I dont remember much of the first four or so days in the hospital. Luckily despite being severly ill I had the sense to keep notes of my concerns, for example being denied antisickness and painkillers following several hours of vomitting and seizures.

For some unknown reason that was never communicated to me all of my medications were stopped the whole time I was in the hospital which led to uncontrolled seizures, spasms and pain. My kidneys were found to be damaged, there are changes to my spine and in my brain matter, I have been diagnosed with epilepsy. Twice whilst I was in there I had an NG tube placed and failed. Unfortunately the second time round it took the drs 6 hours to view the xray showing it misplaced. In this time I was quite distressed due to the fact I was violently vomitting blood due to a tear from the ng in the lower eosphaoghes for the better part of the 6 hours all with a dislocated jaw. A rather agonizing experience.

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Throughout my 6 days in hospital I was on IV fluids 24 7 due to the fact I currently am having extreme difficulty swallowing and can go days at a time unable to do so. At the point of discharge I had managed a few sips in a 3 hour period and was discharged with no plan of action. Its been a hurrondous time since then with me only getting worse. However I am now also completely bowl incontinent which has left me terrified to leave the house. But being the mum of a 2year old means fear cant win.

Hopefully I’ll have a more optimistic update soon.

Archive, November 2015

Week 7 – Agony

Posted on November 10, 2015February 24, 2022 by dystoniaandme

images I’m currently on week seven of my Botox cycle. My injections are not being administered for another week due to a mistake (lets presume it’s a mistake and not my new neurologist being devious, because being frank I would not put it past him). I should be in bed asleep right now. Normally I would currently either be asleep or out with friends. Instead I am medicated to the extreme, I have lavender wheat bags heated up wrapped round my neck, and resting along my jaw and heat packs stuck along my back. To say I’m in agony would be an understatement.

I have resorted to taking Oramorph, a medication I try my best to avoid, however I would much rather give in and take it than have a seizure (click here to read what a seizure is like), and right now I’m concerned that with the amount of pain I am in that I will have one. My brain is not staying connected to my mouth tonight, functional paralysis is something I have suffered from for a few years now, but it has never ceased to terrify me. I understand that it is simply my brain being unable to cope with the amount of pain I am in, so it disconnects from the affected part but it is an unnatural experience that no matter how much I attempt to laugh off unnerves me.

Tonight my jaw is particularly bad, and is frequently being functionally paralysed leaving me unable to verbally communicate. It may seem like a small thing to some, but when you are trying to desperately to get any part of your mouth; whether that be your lips, tongue, just anything, to move and they won’t, apart from when they spasm, its horrendous. I cannot yell for help if I need it, I cannot cry in frustration or call someone to talk too to distract myself. I am stuck with my jaw spasming, distorting itself in ways that should not be possible, threatening to dislocate, and all I can do is cry silent tears, pray that I do not have a seizure and use this blog as an outlet for my pent-up frustration with this crushing condition.

I have a 9am lecture tomorrow morning. Which I am determined to attend, most likely in a wheelchair for my own safety, one of my close friends has agreed to take me there which has helped put my mind at rest. For now it is back to attempt sleep and hope that my little Dystonia Alien allows me some rest