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.
After discovering recently the wait to be assessed in my area for an electric wheelchair was likely to be several months if not more, we decided to explore what other options were out there. My happy accident after days of searching and getting to the point of really feeling like I was just going to have to accept that I was essentially mainly house bound at the moment, I stumbled across National Mobility Hire, which I have until April 2021; hopefully by then I will have had my assessment but that’s about the current wait time. I only wish I had found them sooner. This morning they dropped my electric wheelchair off and it’s as if they gave me the key to life back.
As soon as Damon had got home from work we set off out with the kids to test drive the chair. It was a complete and utter dream, to be in control was empowering and so uplifting. It gave me such a boost. Since loosing the use of my leg I’ve been unable to take my son to school, such a basic task every parent does and it has devastated me. We weren’t entitled to help from the council as he’s not compulsory school age, my partners hours change every other week so he couldn’t take him, and Covid-19 has limited our options for help as we live in a Tier 3 area. Honestly with each week that was going past it was harder to figure out; this chair completely changes that, it enables me to get him there and back again. Knowing I can do this myself again brought me so much joy.
With every general election, and with every leadership contest, we get new a new prime minister. A new figure, each with their own agenda and view. When it comes to politics, my number one concern has always been for the potential impact that the candidate and party will have on the NHS. Many laughed when America elected Trump to the presidency and in my eyes I worry that the conservative party may have just followed suit.
During President Trump’s recent visit to the UK he stated that everything was on the table for a deal – including our NHS! Whilst Theresa May later retracted his statement, it is clear where Trumps eyes are focused for trade and both he and Boris Johnson made it publicly known that they are on good terms. Is Boris as brazen as to go as far as ignoring May’s stance and instead pursuing a US/UK trade deal which involves the NHS to a degree? Who knows but I for one wouldn’t be surprised.
So why such concern? As with any service, the NHS has its issues which is to be expected when it is incredibly underfunded and overstretched, however the NHS is a complete blessing. Without our NHS I could not afford my treatment: regular injections and medications allow me to eat, drink, swallow, see and communicate with others verbally. It is literally life changing. For many, such as myself, the possibility that the NHS could be impacted is a terrifying prospect.
Late Tuesday afternoon whilst curled up on the sofa nattering away to my partner my jaw dislocated. It wasn’t a surprise. It had felt off all day, with pain radiating around the area, and visibly subluxing often so I had stuck to soft foods all day. Being me though I hadn’t considered that talking a bit less might help. I rather excel at talking. It’s quite unusual for me to not to be able to relocate my own jaw but I decided that I’d try and sleep on it and if it was still bad in the morning I’d get checked over. I can almost hear you shaking your head at me, in hindsight I agree that was a silly decision.
So yesterday morning I took myself off to the Walk-In centre where after a quick (and right) lecture on dislocated jaws being an emergency I was whisked off to my local hospital. It was my first time visiting the A&E up here since I’ve moved and I was a tad nervous. But the staff were wonderful. They were rushed off their feet, but they were so kind, it was a breath of fresh air in comparison to what I am used to.
X-rays confirmed that the right side of my jaw was fully dislocated. After using a rather unbelievable amount of tongue depressors failed to relocate it, it was decided to take me round to the resus unit where I could be sedated and they could try and manually relocate it for me. They were so full of confidence, to the point I too was full of confidence, I happily offered them my arm whilst they pushed the sedative through, I can remember giggling as it kicked in…and then I can just remember the pressure as they tried to manipulate it. Two different doctors tried three times. I screamed. My jaw failed to relocate. They were lovely though. At this point the decision was made to phone for an ambulance to take me to a different hospital to see the specialists there.
When the consultant walked through the door I could have broken down; and to be fair I did about five minutes later. I’d seen him previously about 7 years ago and the visit burns in the back of my mind as a prime example as exactly what a doctor shouldn’t be. Upon entering the room this Dr recognised me instantly. He doesn’t believe in Dystonia. He ignored the fact I have EDS and suffer with frequent jaw dislocations. Whilst I am thankful he relocated my jaw, I cannot express how belittled, put down and worthless he made me feel. Upon leaving the hospital he advised that I start on a liquid diet but gave no further advice on time frame or inteventions in the meantime.
Out of frustration with feeling like I just didn’t know what to do to help myself this morning I went to see my GP, I am lucky to have a wonderful one up here. He was quiet astonished that I had been discharged from the hospital last night as you can see my jaw subluxing still and with my history its only a matter of hours/days until it fully dislocates again. So I’ve been referred to the oral surgeon and on strict orders to maintain a liquid diet until then. Dystonia and EDS are two conditions that really work against each other so here’s hoping there’s a not too drastic treatment plan in the future.
Today the NHS celebrates its 70th birthday, and with this milestone it is important to acknowledge what a valuable asset it is. With a government that seems to care very little about it, it is more vital than ever before that we shout from the rooftops about the wonders it performs day and night 365 days a year, and make our opinions known when it comes to ensuring that the NHS receives the funds it needs to continue you the amazing work it currently performs.
I am lucky to have experienced both sides of our NHS, as a student midwife I witnessed the strain in staff numbers and how overworked they are; as a patient I honestly doubt whether I would still be alive without them. I’ve had more ambulance trips than I care to count, and spent many months over the years being cared for as an inpatient. Without my neurologist I know that I would have little quality of life; I would not be able to eat, drink, talk, see, or move my limbs. He enables me to live a life that is fulfilling.
To the NHS I say thank you. Without you many lives would be extinguished, and many more would be experiencing incredible suffering. Thank-you for doing your all every day and night all year long. Thank-you for continuing to provide outstanding care despite your own government failing to supply you adequately. Thank-you.
Today you published the article ‘Matt Dawson: I had to have heart surgery after a tick bite’. At first I was thrilled, it is always uplifting to see articles highlighting this condition being shared by the mainstream media. However as I eagerly absorbed each sentence , I could feel my heart sinking further in my chest. In fact I’m pretty sure it dropped straight out of me and into the flat below under the weight of my disappointment! You could have taken this opportunity to really highlight the world wide issue when it comes to diagnosing and treating Lyme and Chronic Lyme Disease. The fact that you didn’t leap at this opportunity is beyond me. What happened to the BBC being at the forefront of reporting, challenging the establishment, pushing boundaries?
You even went as far as mentioning that if Lyme goes untreated it can go on to attack and cause ‘debilitating neurological problems’. This was your perfect opening to delve into the devastating condition that is Chronic Lyme; you could have examined how the tests for Lyme disease are extremely inaccurate and false negatives are a frequent occurrence; you could have investigated how NICE guidelines have left the few doctors who are up to date enough with the research in the area to believe in Chronic Lyme, unable to treat their patients without risking their medical licence. You could have mentioned how, if you are in the unfortunate situation of having to fundraise money to pay for your treatment, you are looking at a minimum of £10,000 for private medical bills and that there is no guarantee that you will be cured. You could have investigated how many people that are given the early treatment are actually, years later, successfully cured.
I was bitten by a tick at the age of 6, at the age of 22 I was diagnosed with Chronic Neurological Lyme Disease. Almost 3 years on and I am still fighting. Last year I was informed by neurologists that they were 99% certain I had MS, but then my MRI came back clean, when I brought up Lyme my case was swept under the carpet. Sufferers are abandoned, left to battle their own way through the system, made to feel like a fraud whilst their lives and their health fall apart. Unlike your report suggests, it’s not as easy as walking into a hospital and stating you have Lyme and hoping for treatment. It feels like a life sentence.
Yes that’s right Dr, at the tender age of six I was bitten by a mythological creature. Within six months of this terrifying beast having a chew on my thigh you diagnosed me with M.E. You had exhausted all other diagnostic criteria. Not once did you consider that something so dramatic as a dragon bite may have occurred. Had you have taken a thorough medical history maybe right from the start you would have suspected Lyme Disease, perhaps you would have treated me and cured me of this hideous illness straight away. But how silly of me. You are a Dr, you do not deal in the likes of maybes, possibilities and mythological creatures; only cold hard facts, ones that fit nicely into your tick boxes.
Over the last 17 years do you know how many times your kind have uttered the words “It would appear you have X, but I am unsure because you just don’t fit into any of these boxes exactly!” Since when did the boxes become so rigid and unadaptable, are we not all unique individuals with our own mix of conditions that affects us all in varying ways? If as people we are so unpredictable in the way a condition may manifest, why then are your boxes so unforgiving. Only Monday of this week the Dr sat there trying to decide whether to diagnose me with inflammation of the optic nerve in both eyes or inflamed retinas in both eyes. Frankly the lovely woman was lost, I had her quiet confounded. She could see plainly that I was rather ill, her barrage of tests confirmed that, but not one of them could put their finger on as to why. I sat there quietly next to my mother, both of us whispering “The dragon bit me 17 years ago, but you don’t believe in Chronic Lyme Disease.”
Now replace the word dragon with a tick. This small seemingly insignificant creature is known to carry, in many cases, Lyme Disease. A disease that more often than not will report a false negative during testing due to the lack of accurate testing methods available. Oh but a lumbar puncture would pick it up you say? Yes, it sometimes does, but my neurologist swears me away from it for fear of making my Dystonia worse. One hospital says we will give you IV antibiotics that you need to cure you but we will only do this if you have an L.P, another admits they are 100% certain I have chronic Lyme but their hands are tied due to regulations that are out of date and blinded with inaccuracies.
Chronic Lyme is often hailed as the Great Pretender. You only have to look at me to see why. Here I am in another flare up of symptoms, attempting to treat each one as it appears. Its distressing really, knowing that IV antibiotics would cure but regulations prevent this as I’ve had both positive and negative results. So in the meantime it’s a guessing game of what will subdue the next round of symptoms for now.
If only Drs believed in mythological beasts like Dragons and Lyme Disease.
Since I last blogged things have been hectic. I have spent the majority of my days either at the hospital having various investigations carried out, or on the phone to them chasing down followup appointments. This week I have had more bloods taken and an MRI of my brain, eyes and spine with contrast performed. Tuesdays MRI experience seemed a bit surreal. It took 35 minutes, three medical personnel and 7 attempts before I was successfully cannulated as my veins were up to their usual disappearing act. This time allowed for me to internally become quiet anxious at the thought of being in the MRI machine for a minimum of an hour – in the end it was about one hour twenty. I am generally not a claustrophobic person, but this machine brings that fear out in me, this is most likely exacerbated by the fact that I have to be strapped to the table to ensure my spasms cannot move me around to much and distort the images.
My stress levels have been through the roof this last week. I have fought so hard over the last four years to be put on a medication regime that allows me to have more control over my body again, and live a relatively normal life. The mere thought that my body may become more of an issue again is distressing. However I am lucky that I have a good support system in place, my family help keep me distracted, my boyfriend is great at talking through my concerns with me, and my councilor has been a fantastic space for me to vent and explore my frustrations at my faulty body.
I get the results of my MRI on Monday. So I shall know then whether more investigations need to be carried out or if it is MS.
Over the last few month social media has been aflame in reaction to your demand of a seven day week NHS, and dismissive and degrading attitude towards Junior Drs. For weeks I decided not to weigh in on the argument but as an extremely frequent user of the NHS I feel it right to raise my voice. I may sit here typing away and complain about yet another run in with my neurologist, but whenever I have really needed the NHS they have been there, 7 days a week, 24 hours a day!
For almost two years my condition was seriously uncontrolled, this resulted in an ambulance being called out at least once, if not twice, a month. The paramedics had never heard of any of my conditions; they had to learn on the spot and stabilize me the best they could before transferring me to the hospital. My family have nothing but three years of positive thanks for the paramedics we have come into contact with.
Whilst I lie seizing on a trolley, unconscious in a hospital because my brain cannot deal with the pain my movement disorder is causing; it is the Junior Drs that 9 out of 10 times provide the treatment. They are not yet stuck in rigid textbook ways, they want to learn and get stuck in with my non-compliant body, trying everything they can think of. They have gone above up and beyond for me.
My neurologist has scheduled appointments at 5pm but not seen me till gone 6pm. He could have sent me home; he could have had me booked into another clinic or requested a member of his team see me. However, he stayed on into the evening to treat me, he spent more time than he needed listening and answering my questions. His clinic had long since closed but he always makes time for those who need it, I have not once seen him turn a patient away due to the time.
So you see Mr Hunt, I have experienced a fair section of the NHS services over the years. I have had scheduled appointments and I have been rushed into resus by ambulance at 3am on a Sunday morning. They are already providing an incredible 24/7 service, instead of cutting budgets and debilitating already struggling hospitals, try enabling them for a change!
Currently I feel like I am a whirlwind of emotions – confusion, terror, anger, helplessness – are to name a few. From the 1st of September almost daily I will get another test result back from the private hospital, and then on the 10th I shall attend to see if they have decided to treat me or not. If they do agree then I cannot even begin to describe the relief I would feel at finally getting the correct treatment. But it would be very bittersweet relief as I would have to somehow fund this treatment.
Yet the panic I am already feeling about finances is nothing in comparison to the terror I feel about having to deal with the spasms caused by my Lyme Disease on top of my Dystonia again. I know that I have dealt with it all before so I CAN cope again, but I don’t want to. The thought of it sends me running for the hills. When my hands spasmed before I frequently used to tell my mum that I felt like I had pulled my fingers out of joint, I’ve recently been diagnosed with Ehlers Danlos type 3, which makes it highly likely that I was subluxing in my fingers. To be frank I am scared of the extra amount of pain that untreated Lyme Disease will bring. At the moment with oral treatment it is dulled down, manageable. Which has enabled me to learn to cope with Dystonia and the pain that it causes. I don’t want to go back to being rushed by ambulance in to hospital every month.
I have enough oral antibiotics to get me through to the middle of September at the moment. From our recent experience of coming off the antibiotics and the deterioration that that caused I am loath to go through it again. Its quite selfish really as I know a lot of my fear stems for not wanting to lose my hands again. I love being able to do simple activities such as brushing my own hair. It is a sign of independance and I get such satisfaction from being able to do tasks such as this.
The majority of my Dystonia is well controlled with Botox, and Benedict is not inflicting too much pain at the moment. I just want to maintain/improve my condition. In the meantime I shall keep my fingers crossed that the private hospital wants to treat me, and wish to the NHS fairy that they open their eyes and acknowledge chronic Lyme, and start treating us sufferers properly!!
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