Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘doctors’

I’m A Spoonie, Not An Addict

Over recent months’ painkillers and Drs’ willingness to prescribe certain painkillers has been a hot topic in the news and on social media. Every country has different takes on the matter, but patient’s opinions are largely the same: We’re not addicts, so don’t treat us like we are! Now I’m not trying to deny that there are people out there, that for whatever reason, will say and do pretty much anything in order to get their hands-on prescription painkillers; but it’s sad that a handful of people can have such a dramatic influence on the chronic illness society. The majority of us need these medications.

Over the last few years I have had my meds altered significantly. I have met some Drs who didn’t want to prescribe me anything stronger than paracetamol, and whilst I’m always grateful for anything that makes a dent in the pain, I tend to find that paracetamol doesn’t make a huge difference to the agonizing spasms, or dislocated joints. If you have ever dislocated your jaw and then had spasms and tremors aggravate it for hours/days afterwards, you’d know that paracetamol isn’t going to do the job. Throw in pain triggered seizures and you’re in for one heck of a ride…and oh yeah more pain, on top of the existing pain, it’s a vicious cycle. Some Drs I have been under have been more than happy to have an open discussion about my medication, and then offer me a selection of painkillers that they feel are appropriate. I will always choose to start at the less extreme option.

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There is no getting around the fact that painkillers can be addictive, and this is where the problem comes in. I completely understand a medical professional not wanting to provide a long course of pills that have the potential to cause more issues such as addiction and withdrawal. That makes perfect sense. However, there are ways to go about talking through this with patients that are sensitive rather than demeaning. I have lost count of how many times I have been accused of being addicted to pain meds, I’ve had Drs suggest I have counselling for my traumatic past as a replacement for my painkillers. Now correct me if I’m wrong but I fail to see how counselling for previous issues will solve a movement disorder and a genetic connective tissue disorder. I understand that a low mood can cause a patient’s pain tolerance to drop, and that pain in turn can cause low moods, but I still have a major problem with this line of thinking. I’ve given in to Drs on all of these occasions, and have been satisfied in the notes that get sent to them by therapists querying why on earth they thought I needed therapy. Believe it or not I am pretty happy despite being physically flawed.

Patients should not have to worry about admitting to their care provider that they are struggling to handle their pain. They should be sure in the knowledge that their Doctor will examine all the options that are open, be that a change in prescription, a physical therapy referral etc. There are many avenues to dealing with pain that should be explored and there are great patient courses teaching you how to reduce your pain as much as you can without meds. But we shouldn’t be made to feel like criminals for holding our hands up and saying I need help. If I wake up in the morning and I’m in pain then I know that by pacing and with regular breaks in the day that I can minimise the potential exaggeration of pain, however if I wake up with spasms/dislocations or both, then it’s reassuring to know that I can dull that pain to a point where I can function.

There’s no shame in needing help and asking for it.

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This happens too often!

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Four Years On

Five years ago I was ordering every midwifery textbook and journal listed on my degree reading list; excitedly absorbing every word each page had to offer. Through that next year I lived and breathed for the job. I am immensely proud and blessed to have had that opportunity and experience.

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That year, however was blighted by ill health. I had operation  after operation and frequent trips to the local A&E. Reflecting back on that time I can track the dramatic decline in my health before my Dystonia took root at the end of July 2012 and Benedict my Dystonia Alien became part of daily life.

For the first year I honestly did not cope. People would tell me how well I was doing and silently I would disagree. I was spending the majority of my time holed up in my room desperately searching for any other answer, any other curable illness that could explain my symptoms. I had no idea how to be me anymore. I had built my whole identity around midwifery, the reality that I was, and still am, to ill to practice had me in denial for many years.

Since 2013 I’ve rediscovered how to live and enjoy life no matter the severity of my symptoms. It does not matter if I am reliant on a wheelchair/stick/splint or if my body is spasming to the point of distortion and dislocation, there is always something positive to latch on to.

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Now that’s not to say down days don’t occur,  they do but on a far less frequent basis than previously. Generally these are only after baffling drs or a new diagnosis being added to the growing list.

Living life with a goal oriented focus has been a huge help for me. It doesn’t matter how big or small the aim in mind, the motivation it provides is key. This mindset has enabled me to qualify as a Reflexologist, complete an AS in creative writing, start a new degree that I adore and now focus on getting my novel to publication.

Aiming and achieving my goals enables me to feel as if I am defeating Benedict. I know he’s never going away but it makes living with him easier. When I first got diagnosed I could barely imagine the next week let alone year. The idea of living with my conditions for any length of time was to painful and deeply upsetting. Four years on I can look to the future with the knowledge that my body will never function as it should but excited as to what new milestones I can achieve next.

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Another Referrel

Eye-chartSitting back in the upright, green leather chair, I stare straight ahead at the wall with my left eye covered up, where supposedly I should be able to see two rows of letters. I can’t see a thing. Not even there outline. I can see a white blurry box on the wall but that’s about it. The optician is quite frankly horrified at the deterioration of sight in my right eye. It has only been eight months since my last appointment, this dramatic result shocks us both. I thought my glasses prescription just needed a slight tweak. As it turns out new glasses cannot fix this issue. By the end of the examination she murmurs a simple sentence that chills me. “I need to refer you to the hospital, the muscles in your eye are not working properly”. What?! This was meant to be a routine appointment.

I questioned whether it could be my Dystonia, and while it was a possibility, she was not convinced it was. She explained the three different medical specialists I would most likely see at the hospital, the last being a neurologist. It always seems to end up there.Can I just have a new brain? As it always goes with these things it shall most likely be a wait before I am seen. In the meantime the possibility of another intruder controlling my body, my sight, hangs in the air. If it turns out to be Dystonia then other than piling me with more medication there is very little they can do, as they are unable to inject these particular muscles.

Over the years I have always been told that my left eye has compensated for my right. Its doing this now more than ever. With both uncovered I can see, things get blurry now and then but generally I’m okay. Cover up my left eye and the words in front of me are blurry, I cannot even focus on my own hands! It’s times like these that I want to take the faulty parts of my body out, line them up and just yell at them. Realistically I know it’s not going to get me anywhere, I’ve also banned myself from googling my symptoms, I know it will just tell me I’m  going to die, it’s one of the things google does best! I’d rather wait for hopefully a much more optimistic diagnosis from a Doctor.

So I’m keeping my fingers crossed that it’s not the Dystonia, and that it is a condition that they can easily treat! It would make a nice change.

Judging When To Get Checked Out

Saturday evening, after a drizzly but fantastic day spent at Ascot racecourse, I found myself lying on my side in the living room in a fair degree of pain after my hip gave way. After a quick feel I was certain that it hadn’t dislocated and the fact I had remained conscious and had not slipped straight into one of my seizures reassured me that nothing too untoward was at play. However my hip, when not spasming, has never been the reason for me falling before, so the fact I was not seizing I felt could not be 100% relied upon. Perhaps my brain had functionally paralyzed that part of my body? Even momentarily, would have been enough, after all my hip had caused me increasing amounts of pain all day.

I still don’t know why this happened. After spending a couple of hours on the floor we eventually got me to my room, and I spent the following day, on bed rest, taking plenty of regular painkillers and ant-inflammatory’s. It is only now on Tuesday that I am walking around without as much discomfort, though I’m still taking regular anti-inflammatory’s. One of the issues I often find with my myriad of medical conditions is judging when to get arising issues checked out. With my bones I usually go by whether the complaint is swollen or not, this is on the advice of a plastic consultant, due to my EDS. However when it comes to the rest of my conditions it can be pretty hit or miss.

When I end up in Accident & Emergency, or when I’m at my GP’s, I often feel like I’m wasting their time because of how often I’m there. The best they can do is patch up the new issue; like sticking a fabric plaster on a cut before getting in a bath. It’s almost pointless because you’re just going to have to stick another one on when you get out, but for the mean time it’ll do. The reasonable part of me knows this isn’t the case, that I need their help and I’m extremely thankful for it. But whilst I’m there I can’t deny that’s how I’m feeling, especially when a lot of appointments involve me battling to receive treatment I need.

Judging when to get checked out is a minefield. So often I leave things until they have reached a point where I probably have made it worse for myself. This seems to be a common issue among people with chronic health conditions. Many of us have accepted that we are chronically ill and that we will have falls or spasms etc., we just don’t want to make a nuisance of ourselves or accept another symptom or injury.

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Mind and Body: Opposite Ends Of The Spectrum

The difference between my mental and physical capabilities is vast. Dystonia has meant that my health has changed frequently and I have to constantly remind myself that just because I think I can do something doesn’t necessarily mean I can. Those who know me well, know that I tend to think well I’ll give it a go and if I spasm, then I’ll learn from it. Trouble is, my thought pattern then alters to well body, you may have spasmed last time, but if I do it again perhaps you will learn. It is not a smart way to deal with the condition; my neurologist really is a saint for putting up with me.

Mentally I feel no different to how I did before I became ill. If anything I am more determined to do things, to attempt to try to retrain my brain. It may sound slightly out there, but if you can desensitize nerves, then why not reteach the brain movements? I’m determined to get it through to my Dystonia alien, that twitching and throwing things just isn’t polite.

Over the last two weeks I have been far more active than usual. With my exams over and done with, and no revision needing to be done, I have filled my spare time with constant activities.  Part of me is aware of my neuros six weekly reminders to not overdo it. I know that eventually my body will crash and spasm far more than usual, putting me at risk of seizing. It would be far more sensible to pace myself, to do an allotted amount each day. To do this would make my Drs happy, but I doubt it would reassure anyone that I was any safer; friends and family would still be concerned about me. I would still be ‘ill’.

To live my life by allotted sensible slots wouldn’t make me happy. Burning out now and then hurts like mad and I always say that I’ll take more care next time…followed by a laugh because I know I don’t mean this. I love to be as busy as I can. I will never overload myself completely; don’t get me wrong I allow for plenty of down time, chilling with a good DVD, recuperating. But slowing down isn’t for me, I know I’m ill, my body gives me a daily reminder (when the Botox is wearing off) with all the walls I hit, the jaw spasms and mad blinking but I have a lot of living to catch up on. I plan to do just that.

Unpredictable but Not Alone.

Dystonia is an unpredictable condition. It tends to progress slowly and the severity of a person’s symptoms can vary from one day to another“, NHS Choices. This quote sums up Dystonia quite nice and simply I think. It is extremely unpredictable, which makes it hard to work out what you are capable of doing one day to the next, if you guess wrong the games over for the day. In my case guessing wrong would result in me putting my spasming body to bed and hoping that a long nap will help calm my symptoms down…but thats providing the spasms don’t stop me from getting to sleep. I always try to make the most out of each day, to accomplish as much as I can incase the next day results in being unable to move from my bed. However trying this can often backfire on me and ensures that I spend the next day in bed, but sometimes if I’m really lucky I get away with it for a day or two. These are the days I love, as on these days I am beating my Dystonia – not permanently, but even an hour of winning is a huge achievement.

Dystonia symptoms and it’s impact varies from person to person. A quick glance at the Dystonia Society’s list of type of Dystonia and their symptoms gives you an idea of just how wide a range http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia . Due to this it does not surprise me that Doctors understand so little about the condition, why patients have little choice but to fight tooth and nail to find a treatment that works for them, to find a doctor who will listen. Through the power of the internet I have slowly got in touch with more and more sufferers, and even a handful of curious doctors. The sufferers amaze me. I hear the stories, and count myself lucky that I have a good support network, something many do not have. We all band together to raise our voices to get Dystonia out there, and it’s working. Slowly but it’s working. The emails I get from Doctors around the world prove that.

Yesterday at Choir we were practicing Christmas songs, which got me thinking of all the things I was thankful for. As much as I wish nobody had to suffer from this hideous condition, I am so extremely thankful that there are others out there. That those of us lucky to have found each other can support one another, give advice and a listening ear. Without being in contact with these amazing people, I honestly wonder how I would cope. I am also thankful to those of you who read this blog, and often share it with others. Since becoming ill I have become determined to become an advocate for Dystonia, to make my voice heard, and bring awareness to the condition and what it is like to live with it. Looking at the comments you lovely people leave me, the shares, likes and statistics  brings me such happiness, as it shows me just how far my voice is being heard and assures me I am on the right path.

On one last note, I promised a while ago to upload photos of the amazing women who raised money to buy me a bath lift. I have attached them underneath. I feel incredibly lucky to have met such generous and caring women.

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Ambulance Trip

After two weeks of no seizures, and no ambulance trips since July, my seizure free luck ran out yesterday. Having had a fantastic day at college, I collapsed outside my house after my legs went into a bad spasm. I feel sorry for my poor friend who took me home that day as it was not a nice experience for her.

I gave my body a good whack on the ground when I collapsed, triggering my seizures. Normally with my Non Epileptic Seizures I come round, even if it is just for a second, between them. However yesterday this did not happen, I remained unconscious in between. Luckily my younger brother and one of younger sisters were at home, so they were able to bring pillows, blankets etc out  to keep me warm whilst my friend kept me safe.

An ambulance had to be called, thankfully I always tell everyone that I have a letter from my neurologist in my handbag instructing paramedics and doctors on what to do. This letter meant that the paramedics quickly administered diazepam to me. As I was remaining unconscious and had been unconscious for so long I was given oxygen and taken to the resus unit at the hospital, where I was monitored for several hours.

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I feel sorry for the first doctor in charge of me as he was very unsure of my condition and therefore seemed to feel frustrated as he was unable to help me. My body being its usual unhelpful self did its typical vein disappearing act. It took the poor man seven attempts to get a line in me and bloods out of me.

Despite this incident ruining my good streak, I am still viewing it as progress! Hopefully these blues and twos trips to hospital will continue to be less and less, until they fizzle out completely all together. It may take time, but it will one day happen. I am so thankful for my letter from my neurologist, I am sure with it out I would not have received diazepam so quickly, and that was much-needed to help bring me round.

I am now home and shall be spending the next couple of days recuperating from yesterdays events.

Inquisitive Nature

Two of the most common questions people ask each and every day are how and why. Why do people get ill? How do we know that colour is actually green? Why is it always me? How does this work? Sometime we are not seeking an answer when we ask these question and the question has been asked in rhetorical way e.g why me. However the majority of the time we are seeking an answer. As humans, like the majority of animals, our own nature makes us inquisitive, we like to know the ins and outs of everything and anything, but if you put us in a situation when we cannot find an answer, well then we become fixated.

Which is exactly what is happening to me now. I am completely fixated on what caused my Dystonia, what turned my whole world upside down gave it a good shake and then righted it with all the pieces jumbled up! The logical side of me knows that the chances of me finding out why is extremely small, yet still I try to work it out. I sift through pages and pages of information grasping at any small shred that could contain the answer I’ve been looking for.

No matter how often I tell myself that an answer is not going to make much of a difference, I still continue my search. I am almost amused at myself for how desperate I am for an answer. For even when I find the answer, other than it giving me some piece of mind, it is not going to change much.  However until the doctors agree to help me, I know that I shall keep looking, so that if the day comes when there is no answer, I can sit back and think well at least I tried.

For now though I am going to try to reign in my inquisitive self, and remind myself to spend less time looking for something I may never find and more time enjoying the wonders around me.

Bring It On!

Yesterday afternoon I collapsed outside of my house and started having Non Epileptic seizures and Dystonic spasms. As I was not regaining consciousness I was rushed by ambulance (with blues and twos on) to my local hospital, where I was luckily treated by the lovely doctor who I had seen the last time I was there. The doctor remembered exactly who I was and even where the best place to take blood from me was! I was extremely impressed with how I was treated. I was unconscious for a couple of hours and have very little memory of the event.

Today I am rather sore, but I am also feeling inspired! My illness repeatedly puts me through hell and back, but its ok! I know that no matter what my little Dystonia alien throws at me, I will get through it. The image below depicts exactly how I am feeling.

Whilst Dystonia and Non Epileptic Attack Disorder are truly hideous conditions to have, I could be so much worse off. I could have cancer or another potentially life threatening disease! So I feel blessed that my condition merely limits me.

Through being ill I have had the privilege to talk to and meet some of the nicest people I have ever met. They all support me and give me strength! For example other bloggers and health activists; talking to them is a joy, as they can understand, advise and support me. Another great example are the amazing staff in the chemist by my doctors. I love going in there as I always get a warm welcome and have a quick chat, which puts me in a great mood.

I may suffer from a hideous condition, but I am so much more than just an ill person. I am a health activist, a fighter, I can be anything I want, and I can achieve anything I want. Just you wait and see!

 

What caused my Dystonia?

Since Dystonia started affecting me nine months ago, I  have often asked what caused it? I have accepted the fact that I have Dystonia, and why it is me that has it is no longer important to me. What does matter to me is what has caused it!!

I understand that Dystonia is caused by a part of the brain called the Basal Ganglia sending out the wrong signals, but what caused it to do that? Is it genetic, do I have a gene mutation, is it due to dopamine, have I fell and landed on my head to many times? It may seem like a trivial thing to dwell on, as after all knowing why/what caused the Dystonia, does not change the fact that I have it, all it may do is change my treatment plan. Yet it remains an important issue to me, I need to know what caused my brain to stop functioning the way it should.

What I cannot understand either is why the Doctors do not want to find out the cause? I had a CT scan done back in August which confirmed that there was nothing structurally wrong with my brain. Knowing that is great, it’s a relief and something that I can strike off as a probable cause. However beyond this scan no other test has been done, so how can they treat me if they do not know the cause? I know in many cases the cause is not always found, however surely the logical thing to do would be to test for gene mutations, trial me on levadopa etc, check that there is no cause which would require a different treatment plan, before trying and the majority of the time failing, to control my symptoms?

I try my best to avoid thinking about what has caused this, as I understand that I am unlikely to get an answer any time soon, but that does not stop me wanting it. All I can do is hope that a doctor will eventually test me for possible causes. Even if an obvious cause can not be found, I would be much happier knowing that they had at least tried!

So for now, I shall cross my fingers and hope that I will one day get the answers that I need. Until then I shall continue to press my doctors to carry out the tests, until they decided to listen to me.

 

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