Posted in Archive, february 2021, poems

Dislocations; Smashed Avocado Toast

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It’s the breath stealing, heart racing moments.

Nostrils flared, knuckles white with a fierce grip.

Head back, focused. Can’t swear.

Sausages. Bananas. Smashed Avocado on freaking toast.

Hospital? No. What can they do.

I’ll only spasm and dislocate again at one, then again at two.

Pass me Olaf, he needs his teeth done.

Sausages. Bananas. Smashed Avocado on freaking toast.

Fifth Knee dislocation of the day.

The spasms. Just. Wont. Stay. Away.

Still need to be a Floogal Rescue Machine.

Sausages. Bananas. Smashed Avocado on freaking toast.

Posted in Archive, covid-19, January 2021

Disability & Discrimination During Covid-19

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As the world adjust to Covid-19, those of us shielding in the UK (and the thousands of other impacted disabled folk) have read multiple news report to see how it will impact us next. Reading through each new regulation brought in to ‘flatten the curve’ screamed ableism. Whilst I agree the new rules were needed there was no consideration for the disabled people in society. Even under tier three regulations when we were allowed to reemerge from our homes after months of shielding, the regulations had no adaptions for us. They were discriminatory at best; put yourself in our shoes and suddenly being faced with having no access to a public disabled bathroom, having to que to shop with no where to sit when your physically need to, a lack of parking because many disabled spaces are now being taken up by outdoor seating for pubs and restaurants. Many disabled people who were being interviewed for research by Inclusion London reported that they felt excluded and marginalised.

There was a fantastic article in The Guardian today, with an interview by paralympian Sophie Carrigill addressing inequality, specifically around how the needs of disabled people have been ignored throughout our multiple lockdowns; you can read the article here. I completely agree with her, my social media is full of adverts every couple of scrolls trying to encourage me to sign up to one fitness program or another. Even my gym is going live and notifying me, along with influencers left, right and centre. Yet I am aware of only two people currently who cater with workouts for the disabled. What really shocked me though was when I went to comment under the article on facebook. It was disability discrimination and frankly simply disability hate comment after comment. The completely ignorance of people was astounding.

Adaptive Workouts – Disability FriEndly

A fellow Dystonia warrior Gina, runs Adaptive Martial Arts (I’m meant to be trying this when I’m having a healthy run myself!), which you can do via Zoom currently. The second, is a woman I recently found on instagram who teaches dance via her wheelchair her handle is @katestanforth .

Disability Discrimination – The evidence

There has been a significant rise in negative attitudes towards people with disabilities since the start of the pandemic, or to be more specific since the start of the shielding and need to wear a mask. Its not hard to find evidence of this, its all over social media but also sadly there multiple news and police reports on the subject.

A report by the neighbourhood watch found that a recent survey carried out found 62% of deaf and disabled people organisations reported an increase in disability hate crime referrals on the previous weeks – this was just after it was announced face masks were to become mandatory. I myself have twice been yelled at for not having mask on, once whilst relocating my jaw and once yesterday whilst having a sip of a drink.

The findings from Inclusion London Briefing are really quiet troubling about the rise in Disability Hate Crime during the course of this pandemic, you can read it here. To name a few examples 1) A rise in hate crime by neighbours including a rise in hate crime against disabled children whilst they are at home by neighbours. 2) A rise in verbal abuse against disabled peoples and instances of being spat at whilst out of the home due to inaccurate perception the disabled person being a ‘virus spreader’. 3) An in increase in online hate crime, often on social media platforms, in which disabled have been that their lives are inferior and that they are taking up resources from non disabled people.

Disability Inclusion Post Lockdown

Where do we go from here? It’s going to take a lot of work and advocacy to get us to some level of equality – which the Inclusion London Briefing article briefly does touch on. I don’t know when that will happen and how we go about getting the public to flip their perception again. Part of the way that perhaps that can happen is that when we come out lockdown the regulations allows for disabled people to use our bathrooms when necessary, and doesn’t turn our much coveted gold dust parking spots into garden seating for pubs. But that would only be the start, we need a whole lot more to turn peoples attitudes around.

Posted in Archive, December 2020

What’s In Your Flare Box

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The concept of a flare box is one that I didn’t properly venture into untill I attended the Stanmore Inpatient Pain Management course back in early 2016. It was really impressed on me that this was something that could impact my pain management. As soon as I got home I set about setting it up. Almost five years on and I still use these! In fact I have one in my bedroom and a second one by my desk downstairs so that they’ll always be accessible when needed.

A flare is generally considered to be a worsening of symptoms over a fair length of time e.g a week to a month or so. This is in comparison to just having a bad day or two of symptoms, then reducing to your normal levels.

My two boxes differ slightly and reflect the area of the house I’m in. My upstairs box contains several TENs units and chargers, multiple wheat heat packs, a symptom diary and pen so I can write down anything that I think may be important to remember to tell my drs, some volterol cream, neck brace and various other splints for dislocations, earphones, lavender pillow spray, and some books.

My downstairs box has all of the above but it also has some cue cards for if I’ve struggling to physically talk, so I can just flash these up instead; these have my most used phrases on e.g please can you fill up my flask? Please can you reheat my wheat pack? It also contains some electrolyte water soluble tablets for if it’s my POTS is also worsened.

Everyone’s flare kits differ depending on what they feel they need in the flare, and my deffinently have evolved over time. For example right now both have spare socks added to them as I know cold feet induces spasms for me. So in winter some extra warming bits are a must. Plus five years ago I wasnt a mum, so there also contained a notepad with a list of easy binging Netflix show, a stash of free from chocolate and anything else that cheered me up.

Let me know in the comments if you use one!

Posted in Archive, Novemeber 2020

Who to Turn To?

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After a week long stay I was finally discharged from one of our local hospitals yesterday evening. I was admitted due to pain in my left eye which has optic neuritis, it had become overwhelming, to the point I felt I had to apply pressure on my eye to relieve it. I had also lost the sensation in the bottom half of my right leg.

During my time in the hospital they decided to carry out a Lumbar Puncture and MRI knowing that my neuro team wanted to do these anyway. The LP side effects I’m still dealing with, I am still having issues with my bladder, my whole leg now has no sensation, and I have a permanent horrondous headache. Both tests came back clear which left the dr’s there confused. On discharge I was diagnosed with Complex neurological disorders and global sensory loss in the right leg, and told my neuro team would take over figuring out the cause.

Today I had an Opthalmology appointment at another hospital. The opthamologist in charge of my care is wonderful. I sat down, he faced me and said “So you have MS ” he was quiet matter of fact about it. I corrected him and pointed out that my tests had come back clear. He muttered that they were wrong and went on to examine my eyes. After several tests he sat back looked me in the eyes and again said “Rebecca you have M.S”. He was quite insisted that my doctor’s must have missed something on my scans due to the state my eyes were in.

So where do I go from here? Such wildly different view points, everyone agreeing that my local neurology team needs to see me again and review what the different teams have found. However getting hold of them is darn impossible. Both myself and my gp surgery contacted them a few days before I was admitted informing them I was going downhill, and needed input desperately. Neither myself or my gp’s surgery has had a response yet.

Right now I’m very emotional and very stressed. I’m taking things moment by moment and trying to just accept things as they are and get on with it. But I work best with action plans and right now I don’t even know who’s responsible for my care. I feel very lost in the system.

Posted in Archive, Novemeber 2020

Local Anaesthetic and Me

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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.

Posted in Archive, Novemeber 2020

Vulnerability is Strength

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It’s a painsomnia night so I thought I would share with you all something that I’ve been coming back to frequently recently. Personally I’m a very sensitive, emotional person; now some may view that as a bad thing, others a good thing, some of you will be neutral. I can see the pros and cons, but it’s what makes me me, so yes I may cry buckets everytime we watch certain episodes of Vikings, or The Lion King but i’ll also laugh myself to stitches five minutes later. It’s a rollercoaster of life. It’s real, honest and truth.

So why do I, and I know many others with chronic illness will be able to identify with this, go on autopilot everytime a doctor, family member or friend asks after us? You know the drill, you walk into the drs room the doctor greets you and asks how you are before you get down to the nitty gritty. It’s a formality, so like a healthy person you respond with I’m good thanks, and you? It’s ridiculous! Why is it so hard to say you know what I’m actually not great at the moment and I need some help.

I forced myself to do this yesterday. I could hear the usual auto response slipping out my mouth, so I caught myself, took a breath, looked the doctor in the eye and said I’m pretty awful and I don’t know what to do. Now saying that wasn’t easy but boy did the relief for sharing the burden feel good. Making that choice to let the facade of I can cope with everything slip for a moment to ask for help took an incredible amount of inner strength and it’s something I’m going to practice doing more often. Vulnerability is not something to view in a negative light, in fact it allows others to reach out and see if they can improve your situation. Sometimes just talking things over can make a difference.

So just pause for a moment and think; are you like me and guilty of putting walls up? Is it worth flexing your inner strength and letting that vulnerability show? Let me know what you decide to do!

Posted in September

What Can I Do For YouToday?

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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.

Stock photo of pillbox