Tag: pain

Posted in April 2016, Archive

Vulnerability and Dystonia

Posted on by dystoniaandme

Living with a chronic condition can have a detrimental effect on the sufferers attitudes or mental health. Many people experience disbelief from both the public and medical professionals during their fight to achieve an accurate diagnosis. Due to this many choose to refrain from openly talking about mental health conditions and passed traumas with doctors and those close to them. Often this becomes an early defensive behavior that is learned in on order to prevent pre-emptive judgement.

In 2012 during my fight for a diagnosis I found myself in the John Radcliffe for 8 days as I had developed Pain Triggered Non Epileptic Seizures, and my Dystonia had spread from my jaw to my eyes. I was very honest about my past with the consultants in charge of my care. I expressed that I had suffered physical abuse during my teenage years, that I had sought help and that I was now in a much happier place. I still view being honest with the doctor in charge of my care as a mistake however, due to the fact I had had this unfortunate experience I was informed all my symptoms were psychosomatic, and that I need neuro-psychiatric contact. As I’m sure you can imagine I did not take this well. I remember clearly stating that I would go talk to their psychiatrist, purely so I could jump through their hoops and prove them wrong.

Mere months later I had my diagnosis of Dystonia and a letter from my neurologist stating that my past experiences had no impact on my current state of health. That letter has not stopped doctors and acquaintances questioning me over the years though. On numerous occasions I have been asked if I am depressed. I am generally an optimistic person who loves nothing more than to laugh. Yet being repeatedly questioned has its impact. I am defensive of my health, I feel like I have to justify myself and that leaves me feeling vulnerable. For if people struggle to believe me when they can see the physical symptoms in front of them, what else will they close their mind too? Vulnerability is an emotion that too many sufferers of chronic illness experience. It comes in both physical and emotional forms. One of the best things a person can hear is ‘I believe you’. It is an empowering statement that allows us to relax and breath. Acceptance free of doubt opens up a line of honest communication. Something that we all need.

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Posted in April 2016, Archive

Dystonia Awareness Week 2016

Posted on by dystoniaandme

Dystonia Awareness Week has arrived! This naturally got me reflecting on my journey with my alien so far. It has been a long four years to say the least, but the experiences I have had on my journey so far has been worth it. I don’t think I will ever be 100% adjusted to the lack of control I have over my body, but I’ve accepted, adapted and molded who I am around my quirks.

At 17 when I was diagnosed with Oromandibular Dystonia I didn’t understand what was wrong with me. I thought it was some sort of infection causing the issue and that once dealt with it would just be an unpleasant memory. When I was diagnosed with Generalised Dystonia at 19 it felt like the end of the world. Emotionally I was a mess. I couldn’t wrap my head around how I had gone from training as a midwife to being unable to brush my own hair, let alone stand up. Now at 23 I have hope.

If you spoke to me about the condition even two years ago I would have told you that I could not imagine living the rest of my life with it. The idea alone used to reduce me to a quivering sobbing heap. Despite the pain and the spasms, I can now picture the long term. I understand that my Dystonia isn’t going anywhere but I’m okay with that. It’s part of my life now and although it can be pretty dire, it has at the same time filled my life with so much laughter.

As is now my annual tradition I shall be blogging daily through-out Awareness week, and going green for Dystonia. So hop on over here daily for more information on the condition.

For more on Oromandibular and Generalised Dystonia head on over to http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/mouth-or-tongue-dystonia

http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/generalised-dystonia

Posted in April 2016, Archive

Curve Ball

Posted on by dystoniaandme

You would think after almost four years I would have fallen into sync with the pattern of my botox cycle. I would know when to expect the good spells, and be prepared for the out of control moments. Perhaps it’s simply misguided denial that has resulted in me still being unable to predict these moments, it wouldn’t surprise me really.

Up until this evening  I had been enjoying a really good run. My body had been on very good behavior and as usual when I’m in this part of the cycle I had been making the most of every blissful pain free second. This evenings turn hit me out of the blue. I had been feeling slightly off whilst getting ready for a night out with my friends but hadn’t been able to quiet put my finger on why, so had decided to just ignore it and carry on laughing.

It wasn’t until we started making our way to our first destination of the evening that I realized what was wrong. Sitting down I had not noticed that the top of my back was slowly contorting. Each step I took was agonizing. My body simply twisted and further muscles joined in.

I’m not a naturally quiet person, I only generally quieten down when I’m in pain. The fact that I was virtually silent alerted my friends quickly that I needed to go home. So here I am now, lying down, arguing with myself, dressed up for a night out.

But hey at least I recognized I needed to come home.

Posted in April 2016, Archive

Chip; Dating Disaster 4

Posted on by dystoniaandme

After a productive three weeks in the hospital I’m finally back and settled in to university life again. What a better way to celebrate than providing you with the next installment of dating disasters? So hold on to your screens, grab some popcorn and settle in for a dose of embarrassment and reality.

I’d been seeing a guy, let’s call him John Smith, for a couple of weeks. He was entertaining, the attraction was mutual and things between us were progressing well. We had reached that thrilling stage of where do we go from here? It’s always an entertaining dance of social blunders. It’s an attractive situation to be in, and we were both thriving off the tension building. We had talked briefly about my jackpot of disorders and at the time I think he truly believed that he could cope with it all. I was more than happy to believe this. You would think I would know better by now. It would have been different if he had seen just what contortionist tricks my body is capable of from the word go, but when we met my injections were in full swing and so he had never borne witness to my reality.

One night, not that long ago, we were curled up watching a comedy. I always laugh hard at the sound of my own laughter, I’m a bit of a nutter like that. Seeing me in stitches conjured up warm and fuzzy feelings for Mr. Smith, and he leant over to kiss me. It started off great, slow, full of nerves from both of us. Have you ever yawned whilst kissing someone? Not the most attractive move, so to try and hide this, I pulled back. No one wants their face yawned on after all. John read this as me giving into my nervousness, so a little bit too enthusiastically placed his hands on either side of my face to pull me back towards him. If he had had his eyes open, he would have seen the horror in mine. As he pulled on my yawning cheeks I felt the spasm roar to life in my jaw, and the oh so familiar pain as my jaw dislocated.

Everybody deals with witnessing a person dislocate differently. Some people feel sick, others just want to get you seen by a Doctor. I can understand all of these reactions, I’m certain if it was the other way around I would be exactly the same. What I didn’t expect was the wide tumbling range of emotions that erupted from him. For the most part he was repulsed, partially due to the dislocation and partly because he had caused it. Then came the upset, anger and panic. I sat there rubbing in the volterol, knocking back muscle relaxants and pain killers, alternating between trying to calm him down and relocate my jaw.

It was one of the first times I have had someone blame me for being too breakable. At the time I was hurt, it wasn’t like I had not forewarned him. Now I hold my hands up and laugh it off. I am the opposite of breakable, I’m much like Chip the teacup in Disney’s Beauty and the Beast; Slightly chipped but otherwise a barrel of laughter, and perfectly functioning. Looking at me on a bad day I can understand why a person may get the wrong impression, but sit calmly and talk to me and I’ll tell you just how resilient I am. Stick around and I’ll even show you. For now, I’m going to enjoy being ‘breakable’, laugh at my mistakes, highs and downright weird life path. I love my body, flaws and all.

Posted in April 2016, Archive

Inpatient Program So Far…

Posted on by dystoniaandme

I am currently an inpatient at The Royal National Orthopedic Hospital Stanmore on a rehabilitation and pain management program. I have just started my second week and so far it has been an interesting learning curve. The program has many components to it which all relate back to pacing. It would seem that after four years of my neurologist stressing to me the need to pace my life I may finally be learning – but don’t celebrate yet, it’a slow change but I’m getting there.

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Morning Physio Exercises 

I have been really impressed with the course so far, the staff are fantastic. My assigned physio is fantastic and happily allows me to laugh my way through our sessions. Hydrotherapy has been my favorite therapy so far. The water provides resistance whilst enabling ease of movement in a relatively pain free environment. We had a session on foiling flare ups today, it’s rather reassuring to know that when I am discharged at the end of next week that I shall leave with a plan that shall help give me the tools to cope with it.

Whilst I am overall thrilled with the program and have been impressed with the therapies provided I cannot help but be tickled with the kitchen. So far everyday I have explained that I am allergic to X, Y and Z, and everyday I have been served food that I’m anaphylatic to. Ironically the hospital won an award last week for their catering…

Posted in Archive, March 2016

3 Weeks Rehabilition Program

Posted on by dystoniaandme

After a year and a half of waiting tomorrow I am being admitted into The Royal National  Orthopedic Hospital Stanmore for intensive rehabilitation for my Ehlers Danlos Syndrome Type Three. I am a mix bag of nervous and excitement. From talking to previous inpatients  of the program it sounds extremely positive and successful. There are many different components to the rehab, such as hydrotherapy, physiotherapy, pain management and sessions with psychologists. On the most part I am very optimistic, my consultants all feel that the treatment should offer significant improvement.

The only part of the program I am wary about is the psychology sessions. If I could opt out of these I would.  Now I shall be sensible and fully cooperate with them but I can’t help my reluctance. I have had years of sessions with varying types of psychologists. Since I have been ill I have had specific sessions with cognitive behavioral therapists to attempt to control my seizures, however out of the three therapists I have seen only one has looked at me holistically. Due to this my file now contains a note from my neurologist instructing therapists not to focus on my past and informing them it has no impact on my medical situation. Click on  VLOG and blog for more info. However, many therapists choose to ignore this. Whilst I am sure the psychologists I am going to be seeing over the next few weeks will be lovely, I worry that they will be like the many I have seen before.

I get admitted at 8:30am tomorrow morning, so it’s not long to go now. My neurologist is convinced it will make a huge difference to my jaw and I’m keeping my fingers crossed he is right.

Posted in Archive, March 2016, September

An Exciting Month!

Posted on by dystoniaandme

This month is full of opportunities that I never expected to experience. Towards the end of the month I’m going to Amsterdam for a few days with the university, followed by three weeks as an inpatient in the Royal National Orthopaedic Hospital Stanmore. It is an exciting time to say the least.

The publishing trip to Amsterdam shall not only be an insightful opportunity for my course, but shall also allow me to explore how my body will react to travelling. Visiting other countries was a luxury, that when I first became ill in 2012, I thought would have to be swept under the carpet and not thought about again. However, in comparison to four years ago my bundle of conditions are extremely well controlled, instilling me with the confidence to explore this opportunity further. To help ensure that I am as safe as can be my neurologist agreed to administer my Botox a week early to knock unwanted spasms on the head.

Back in 2013 this was me; reliant on a wheelchair with monthly ambulance trips to A&E.

Three years on I’m incredibly lucky to have a regime of medication and injections that enables me to live life to the full. I still need my wheelchair every now and then, but it is no longer a necessity for daily life.

12575854_826427370816377_1942932212_nLess than a week after I return from the trip it is off to RNOH I go for three weeks of intensive rehabilitation for my EDS Type Three. I have been on the waiting list for this stint for almost a year and a half, so I’m a bag of excitement and nerves in anticipation for my admission. My time there should enable me to carry on life with better habits when it comes to using my joints, hopefully that will mean less over extending, and help strengthen the weaker muscles and ligaments.

During my interview for the treatment we discussed what I would like to focus on strengthening, my first answer out of the several I was allowed to give, was my jaw. The combination of EDS and Dystonia means that my jaw comes out of place extremely easily, which inflicts a severe amount of pain. Knowing that jaw physiotherapy will be possible is huge news for me, as this issue is the main factor behind my seizures. Anything that will decrease the amount of subluxations and dislocations for my jaw has the potential to make an incredible difference to my life.

Needless to say I’m counting down the days to go!

Posted in Archive, December 2015, September

But You Don’t Look Sick

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12394480_804191833039931_1805113062_oWell first off thanks for the compliment! I work hard on making sure that I don’t look completely awful. The more my body is playing up the more care I take with my appearance; it cheers me up, and that’s one step towards having a good day. Mr judgemental Taxi man, I may not look as ill as you would like me to, but I was on the way to the Drs this morning because on top of all my chronic health conditions I had contracted yet another chest infection along with sinusitis. Yeah my immune system sucks. Infections on top of my pre-existing conditions are always detrimental and not something my body copes with well. I needed to get a prescription to nip it in the bud!1419509_804226453036469_22790295_o

What do you deem as sick? Do I need to be wheelchair bound, using a walking stick or screaming in agony? Some days that is me. There are days when my meds are not strong enough to control my dysfunctional body, where my body contorts and contracts into positions that you could not imagine. Would you believe I was sick then? Not everyone does. There have been healthcare professionals who have stood by debating over which symptoms are real and which are fake in an attempt to get drugs. This is simply because they do not understand my conditions, I do not blame them, it’s not like my brain has developed the common ailments after all. However taking a moment to listen to someone before making a judgement is not hard.

Next time you see someone who isn’t stereotypically ‘sick’, pause and think.

Posted in Archive, December 2015, September

Laughter; Breaking Down Barriers

Posted on by dystoniaandme

What would life be without laughter? My life was full of it before chronic illnesses decided to move in, but over the last few years I can honestly say I have had many more laughs because of my disorder. Twitched and accidentally hit someone, tongue spasms, fallen over because I spasmed and lost my balance; all of these scenarios result in laughter, it has become my natural response. Yesterday an acquaintance was complementing my ability to cope, she mentioned how she didn’t know how I continued to deal with my mix of conditions day in and day out, and still be able to laugh. Now I acknowledge that not everyone would deal the same way as I do, but I cannot think of another way to cope.
Should I be angry, scared, terrified at the unknown implications of my disorders in the years to come? I’ll hold my hands up; I feel all of those emotions regularly. However, the sheer ridiculousness of the situations I have ended up in thanks to my dysfunctional body has ensured that these negative feelings are not consuming. Laughing, breaks down the emotional barriers that I put up whenever fear raises its grey head, and the barriers that others put up when they don’t know how to respond to what they have witnessed.
It is natural to see me spasm and hit something and for you to feel unsure how to react. We live in society where everyone is so easily offended, that people silently look the other way attempting to un-see the abnormal. If I am giggling at the hilarity of the situation, and let’s be frank it’s a painful but amusing moment, I would much rather you joined in. Laughter allows us to talk about what we are experiencing, it is a fantastic way to spread awareness. I’ve had friends who have mentioned they feel wrong for laughing. It would only be wrong if you were laughing at me, not if you are laughing with me. Don’t over-complicate a beautiful thing.

Posted in Archive, November 2015, September

Dear Mr. Hunt

Posted on by dystoniaandme

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!