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an L.P, another admits they are 100% certain I have chronic Lyme but their hands are tied due to regulations that are out of date and blinded with inaccuracies.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.
The title says it all. I am filled with relief. I have spent the last week hardly sleeping, overthinking and consumed with dread at today’s hospital appointment. Good news for a change though. I do not have MS! The Dr was uncertain as to whether the issue with my sight is being caused by inflamed optic nerves or inflamed retinas, she’s leaning more towards the problem being with my retinas. Because my left eye, which is my ‘good eye’ also shows signs of being affected I have been prescribed a 3 week course of steroids to help speed up the recovery process.
Emotionally I feel drained, and a lot of sleep needs to be caught up on but I am thrilled to know what’s going on with my body and that it can be sorted! This evening is being spent recuperating with Harry Potter, and dairyfree chocolate. What more can a girl want?!
I learnt many things from Harry Potter…this was one of them.
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!
I’m the sort of person that words come easily to, whether that’s verbally or written. I may pause to search for a word once in a while if my brain fog is bad, but normally I’ll pluck another out to replace it. It’s an unusual scenario when I feel so completely stumped and unable to find one to suit my needs. Yet for the past week that’s exactly how I have felt. I’ve tested every word I can think of, yet none quite fit. Which makes trying to describe the situation I’m in now difficult.
When I saw my neurologist last Wednesday, he decided to add Botox injections to my shoulder to see if this would help control my twitches. This has helped beyond my wildest imagination. At first the pain that followed I put down to my body reacting to the injections, after all I do experience similar pain in my neck each time I get my injections. However unlike my neck, the pain has not improved, even lying down at night is painful. Consequently sleep is almost non-existent . Carrying things, anything touching my shoulder is extremely uncomfortable. I don’t feel like pain is the right descriptive word however, though it most definitively applys the majority of the time, I don’t know how to verbalize the sensation that I am experiencing. It is so uncomfortable and is setting my teeth on edge as it is constant. Hopefully it will ease off soon.
On a more positive note I have attached below the photo below that I promised of me standing.
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!!
Today I had an appointment at Jacketts Field Neurological Centre for my neuro-physiotherapy assessment. I was slightly worried as I had heard very mixed reviews about the unit but was doing my best to go with an open mind. As it was an assessment I knew a lot of the time there would be spent answering questions verbally e.g how does your spasms affect your ability to swallow or do you have any walking ability? However some of it was going to be physical, this left me concerned as my body is currently in meltdown mode due to lack of Botox so moving about could be painful. Luckily my mother agreed to come with me which put my mind at rest, if the worst did happen and I had seizure after seizure and an ambulance needed to be called, I would be safe and my mother would be able to instruct them on what needed to be done – however all that worrying was for nothing as I didn’t have a seizure 🙂
After answering a lot of questions and having a good laugh with the physiotherapist, it was time to demonstrate just what my little Dystonia alien does to my legs. Figuring I would only have to take two or three steps with my walking sticks, plus the physio and my mum holding me up, I happily stripped off my splints and stood up. This promptly set off my spasms in my legs and the next things I knew I was on the floor! I had not even taken one step! Benedict obviously had been enjoying playing twister with my face and got his knickers in a right old twister when asked for my legs to join in…stroppy sod! As much as my body is now a little sore at least it gave the physio a good idea of what exactly I am contending with.
Due to how much my body does, the assessment did not get finished even though we majorly ran over time! So we have had to book another assessment in! I am really looking forward to this.
On a quick note this Saturday I am attending my local Dystonia Society Group meeting, this will be this first one I have been to and I am so excited to meet other people with my condition!
The last several days have been very busy and very positive. I finally feel that I am getting things in place that I need and have an aspect of control. As I have little control over parts of my body, having control over some aspects of my life is very satisfying and makes up for my Dystonia alien crazy ways.
This coming Monday I am going to my local hospital for an appointment with the Orthotic department. My splints have served me well over the last few months, however as it has gotten colder my spasms in my legs have gotten worse. My right leg spasms so strongly that it often manages to escape my splints. I am hoping Orthotics may have an idea of what they could do to help. If not I have some images of some splints that I think may be able to contain my legs. It would mean having a solid front section to the splint as well as a solid back, this I think would work well as it would be a lot harder for my leg to break through. I’m looking forward to hearing their ideas.
When the Dystonia hit my legs I was given your standard NHS wheelchair – lets describe it as sturdy. My poor mother struggles to lift it in and out the car, and watching my friends lift it makes me feel awful. Recently however the functional paralysis that I experience on and off has meant that my wheelchair needs some extras added to it but this is not something that is possible. This has meant that when I have an episode of paralysis affecting my back I have ended up flopping half out the wheelchair and being stuck till it comes back.
So after a couple of weeks of pointing this out repeatedly to the NHS Wheelchair service I am now being reassessed to see if I qualify for a voucher that would enable a chair to be customized for me. Even better news is that the even with all the extra things added to it the chair will still be much lighter than my current one.
Knowing that my splint and wheelchair issues are going to be dealt with has given me such peace of mind and enabled me to relax. They are such small issues but in the long run have a big impact so having the two solved will make a big difference.
Last Saturday I attended a bring and buy sale at my local Church. One of the stalls was raising money for The Dystonia Society. In the end just over a £100 was raised, which is incredible. I would just like to say a huge thank-you to everyone involved.
I am so angry right now. I have tried to get in to see my GP for about two weeks now, but as I have been unable to see him I asked him to phone me. I wanted to discuss having IV antibiotics arranged. When I saw my neurologist 5 weeks ago, he agreed that a lumbar puncture would do me more damage than good and that it was worth switching from oral antibiotics to IV. My neurologist put all of this in a letter for my GP.
My GP is usual a great source of help, and I usually think he is fantastic – however usual is the key word here. Today was one of those days where he was exceptionally un-helpful and left me in a rage. He stated that he did not want to arrange it as it would be “complicated”, and he wants me to come in so he can explain why it was “complicated”. When I pointed out the reason I had not been into see him was because he was fully booked in the evenings when someone is at home to take me, he claimed that was nonsense – I had to bite my tongue at this point as I’m sure the receptionist would not lie to me for 2 weeks about him being booked up. He then asked to speak to my mother!!!! Now I am sorry but I am 20, why on earth is he asking this?! Now my mother comes to all my appointments with me, but really what is so complicated that he has to explain to my mum instead of myself?
I feel disgusted, disappointed and disheartened. He wants ANOTHER letter from my neurologist about IV treatment. Luckily I have an appointment with my Neurological Consultant next Tuesday, so I shall explain and ask him to write another one then, but this is all beyond ridiculous. He already has one letter stating it, how will another one saying the same thing make any difference?
I could go privately and pay for the treatment myself, however it is very expensive and I don’t see why I should to do so, when my neurologist was happy for it to be done on the NHS. Why does the medical profession insist on picking a fight with me at every hurdle? All I want is to rid me body of the disease that caused my Dystonia, is that really too much to ask? After all if they had picked up on it 14 years ago I would not have Dystonia now!
Yesterday I phoned the Breakspear hospital in Hemel Hempstead which has a reputation for being fantastic at treating Lyme Disease. It is unfortunately a private hospital so is costly, however my health means a lot more to me than money. I spoke to one of their patient liaison officers about what I was aiming to get from the appointment, specifically the information I need as to exactly what medication I need to be taking and in what form, such as oral or intravenous, so that I can go back to my GP and ask to have the treatment done on the NHS. The P.L.O reassured me that they could tell me all of this in the appointment and that it was up to me where I seek treatment afterwards. I am hoping the NHS will treat me but if not I shall use this hospital. I am very lucky that I don’t live very far away from it.
As I did not want any tests done whilst I was there they are able to see me on the 7th August. This is fantastic as they originally offered me an appointment for the end of September. I am slowly composing a list of questions for the Specialist, as I do not want to forget to ask something vital whilst I am there. I am really looking forward to this appointment and hope it will be all I want it to be.
This morning i went blind and as usual due to the pain it triggered off a seizure. Unfortunately I was sitting a little too close to the edge of the bed and seized off it on to the floor. I think I hit my head on my scales as when I came round my head was really throbbing. My body did not take kindly to my fall and has since played up for the rest of the day.
This evening my poor mother has spent hours in my bedroom looking after me and preventing me from having another fall whilst my whole body spasmed and I had many seizures. My Non Epileptic Seizures really take it out of me, and as a result they leave me wanting to just curl up in a ball and go to sleep. Tonight I am feeling more tired than usual but I think this is because I had to take a diazepam to try to control my spasms and seizures.
Despite my body misbehaving today I am still on a high from Tuesdays consultant appointment and from the excitement from my upcoming appointment with a Lyme Disease Specialist. Things are finally looking a bit better!
Over the last couple of days I have not felt to great and my spasms have been awful. I have found myself going from being boiling hot one moment to shaking with cold the next, along with some interesting spasms. My legs latest trick is to spasm so that the leg is completely back to front, which is not a comfortable position to be in. I am going to try and get my mum to capture a picture of it the next time it happens.
Thankfully today I am feeling slightly more like myself and my spasms have been less extreme. I don’t know if the antibiotics that I am on as a trial for possible Lyme Disease caused the increase in spasms or if I was just under the weather.
I am still waiting to hear from my consultant in regards to being admitted for a week so that I can get some help. We last heard from him on around the 15th April and despite us sending him several emails and chasing his secretary we have heard nothing. When ever I have an appointment with my consultant he seems great, however I am getting more and more frustrated with the lack of help I am getting! Everything that was being arranged for me seems to be not quiet what he gave me the impression it would be. Last October he put me on the waiting list for an inpatient intensive therapy program, and told me that the waiting list for the program was about a year long. However I had an appointment up at the hospital the other day where I was interviewed by two members of staff who will at some point decide IF they are going to admit me to the ward or not. IF I do get admitted it will not be until around June 2014.
I struggle to believe that there is no other help out there that could be put in place for me now. I understand that hospital wards are busy, however surly there must somewhere be at least an outpatient Neuro Physiotherapy service that I could be referred to This is going to be something I will discuss with him when I eventually get to see him. I am hoping that I will at least have an outpatient appointment with him soon as I am in need of my Botox injections for my jaw and neck to be redone.
Until my consultant sorts everything out I am going to keep my fingers crossed that Lyme Disease is what has caused this mess, as at least then I know the cause and that is one thing I can stop worrying about.