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

Posts tagged ‘dislocation’

Functional Paralysis = Quality Floor Time

Pain at the moment is my constant companion. After weeks of agonising, seizure inducing pain, and more hospital visits than I care for, I was informed I’d dislocated two ribs. I normally handle dislocation rather well; if my thumbs have popped out, it’s no big deal, I can pop them back in with ease, my jaw causes a fair bit of pain and in some cases I need help relocating it, but the majority of the time I can manipulate it back into place myself. My ribs however are a completely different story, there’s not a lot that can be done about it. I’ve had several medical professionals try and get them as close to where they should be as possible, a tear-jerking process might I add, and every time within hours they are back out of place. Sometime it’s simply because I twisted too fast or I sneezed or, if I’m a real dare devil, I tried to get out of bed. Everyday basic activities cause enough pain for me to be on regular codeine four times a day, and tramadol if I start seizing. The hospital doesn’t know what to do with me at first, they admitted me to: rule out anything more serious such as gallbladder problems; keep a close eye on the baby (who’s coping miraculously well with my faulty body) and keep me on regular doses of paracetamol, codeine and oramorph. Whilst they thankfully didn’t find anything on the scans that needed surgery, they did notice that both my kidneys are distended which won’t be helping my pain.

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Most days I’m a 6. Currently I’m a 9.

Now I’m back at home and it’s hard to know what to do with myself. There are some brief moments in the day when my pain feels manageable, like earlier today. Foolishly this afternoon, I decided to take advantage of feeling okay and fold some baby whilst clothes sitting on the floor. You would think that this is a job that shouldn’t take too long and isn’t exactly taxing, right? Wrong. The pain quickly got extreme enough, despite codeine, for me to realise if I didn’t lie down flat on the floor asap I was going to risk hurting myself as I knew my ability to stay conscious was fading. Whilst being on the floor was enough to keep me conscious for the majority of the time (I’m pretty sure I had 2 or 3 seizures), it wasn’t enough to stop my brain from going into functional paralysis mode. I spent just over an hour unable to move any part of my body, struggling to get my eyelids to flicker and completely unable to make a sound. I knew I needed help and that my partner was in the next room, but I had zero ways of indicating to him that I was in trouble.

It’s like having your mouth gagged, your eyes taped shut, and your entire body rolled up and bound tightly in a weighted blanket; the entire time even your thought processes become sluggish and it takes effort just to think. There’s so much temptation to just give in to unconsciousness, I can feel it on the horizon, creeping closer and there’s not a lot I can do to keep it at bay. Some days I admit I welcome it; being functionally paralysed terrifies me, I can’t bare being aware of how helpless I am at the moment in time. Other days simply managing to remain conscious feels like the biggest victory I could ever ask for and achieving it is my way of fighting back.

After about an hour on the floor I had regained enough control of my body to make small noises and through the blessing that is voice technology instruct my phone to call my partner. Eventually we got tramadol into me and managed to move me to our bed. I’m exhausted, it sounds bizarre but having your brain cut off from the rest of your body is shattering. I’m now curled up, wrapped in a fluffy blanket, relishing in the slightly duller pain. I’m admittedly scared to even consider moving but the pain killers have enabled me to feel my body and I’m in a safe place which is all I can ask for.

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Accepting Limitations

Yesterday was a hard day physically & emotionally. I was struggling to sit up without my heart rate shooting through the roof, experiencing extreme dizziness, fatigue and high pain levels. This is my new normal though, and it’s exhausting. Late morning I had a phone meeting with my university disability advisor. She enquired about my symptoms and their impact on day to day life, along with what advice I had been given from the Drs; this was so that a plan could be put in place for me to safely complete the next semester of my degree. Admitting that I was fainting 20-30 times a day on average, had been advised to be on bed rest and use my wheelchair if I had to go out (which results in dislocations if I self-propel) was not something I found easy to vocalise. The little stubborn voice in the back of my head was protesting that I was perfectly well enough to physically attend my lectures. However not being able to guarantee I’ll remain conscious, being unable to eat without fainting, and with tachycardia developing just by sitting up a decision was made that I could not safely attend uni without putting myself at risk. Normally I’d argue against this, and I wanted to, but I have to remember that it’s not just myself I would be putting at risk. Now this doesn’t mean I’ll be putting off the semester till next year, it just means I’ll have to complete it from home which is perfectly doable.

Despite the fact that I know this plan of action is reasonable and realistic I couldn’t help but feel defeated. I know I’m not well enough to attend class, but to me that’s not acceptable I feel as if I should be trying harder; it’s a ridiculous attitude to have, but it’s there nonetheless.

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Late last night I found myself feeling deflated and quite sorry for myself. I know this is pain related, I haven’t had so many bad pain days in a row for some time, so when periods of pain flare ups occur it impacts my view of things. Normally I’d just increase my meds, count down till my botox injections, knowing that in a matter of days I’ll be enjoying a good spell again. The fact that (unless an emergency spasm occurs ) there is no botox, no muscle relaxants, and limited pain relief options available until after the baby is here is hard. This is mainly due to having to accept my limitations once again.

Talking through how your feeling is something that I feel is undeniably important in enabling a person to help themselves. It’s the main reason I’m composing this post, so that I’ve expressed myself and can start focusing on being proactive rather than moping about.  I spent a good chunk of time talking to my mum about this turn of events yesterday afternoon. Looking back now I can already laugh at the number of times I uttered the phrase “I don’t understand” or “I don’t know what to do”. The reality is I understand perfectly well why I’m not able to go to class, I have a crystal-clear understanding of the fact all of my chronic illnesses can get worse during pregnancy (and the majority of them have) however this is a temporary change, I also understand it’s okay to feel this way.

There’s really not a whole lot I can do to change the situation, unless anyone can point me in the direction of a fairy godmother? I can manage my pain the best I can but other than that focusing on the positives that surround me is the best way to keep smiling; when I look at what’s already happening this year (moving to a new flat, expecting our son, still being able to complete the academic year, and a publisher agreeing to take on my novel) I have to admit I have more than enough to be smiling about.

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Dystonia and Pregnancy So Far

Each of my conditions have reacted differently to my pregnancy and some new complications with my body have also arisen. So I’ve decided to incorporate these experiences into my blog with each condition being addressed in its own post as they are all unique and confusing in their own way.

At four weeks, pregnant my neurologist told me I needed to come off all of my medication due to the risks they presented to the baby as he developed. At that time, I was having six weekly Botox injections to my eyes, jaw, neck, and left shoulder, and I was on a range of oral medications including Gabapentin, Tramadol, Cetirizine, Topiramate, Dantrolene and more. My dosage for each of these medications were not particularly low which meant coming off them was a bit a of worry, luckily only the Gabapentin caused withdrawal symptoms (something I knew to expect after having the dosage adjusted several times over the years). I’m not sure if you’ve experienced withdrawal from Gabapentin, so picture uncontrollable weepiness because a cloud looks so beautiful, paranoia to the point you’re convinced that the shadow of the tree you just walked past is going to murder you and hideous night sweats. It’s not a walk in the park by any means but thankfully these symptoms didn’t last too long.

My main concern was how I would cope without Botox and my muscle relaxant Dantrolene. Over the last four and a half years I have been reliant on my six weekly Botox to keep me resembling an almost functional person, and Dantrolene was the only muscle relaxant that I found effective and can stay awake on for more than 5 minutes at a time. After expressing my concerns to my neuro he reassured me that I may not find these 9 months as terrifying as I expected, as some women reported experiencing an improvement in their symptoms in pregnancy. I wanted to believe him badly, any improvement I would take in a heartbeat, but at the same time I found it extremely hard to believe that something as natural as pregnancy could offer me an improvement that medication was unable to provide. Now I bow down to the wonder that is pregnancy, I’m currently almost 6 months’ pregnant and unbelievably my Dystonia isn’t too bad.

For the first 12ish weeks I only had minor symptoms, which was a relief as my severe morning sickness (I was diagnosed with Hyperemesis Gravidarum) meant that I wasn’t by any means well enough to cope with any severe spasms. By week 14 however I was admitted to hospital after spending 24 hours with my jaw dislocated and in spasm, unable to eat or drink. In the end, I was in the hospital for a week whilst they attempted to figure out what to do with me; without fail several times a day a Dr would look at me and be shocked that my jaw was still dislocated. I think my let’s laugh through the pain attitude confused them further. Eventually, after my midwife got involved and advocated on my behalf (amazing woman!) my neuro agreed to administer botox to my jaw and restart me on a small dose of Gabapentin, which has allowed me to remain fairly normal with the exception of the odd spasm; but I’ll take the odd daily spasm over an agonising spasm that refuses completely to go away.

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Late November, day 5 in the hospital after being moved to maternity high dependency unit

Whilst my Dystonia is without a doubt very much present still, as it likes to remind me by leaving me functionally blind or distorting my jaw, I’m coping far better than I had ever imagined. I had truly expected to spend my pregnancy bed bound in hospital stuck on a feeding tube with irritable limbs, the fact that this hasn’t (touch wood) materialised feels like a miracle, especially as a feeding tube was at the start debated. If it could just stay like this for the remainder of the pregnancy I’ll thank my lucky stars.

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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Living with Ehlers-Danlos Syndrome Type 3

I don’t talk about my EDS much, though it’s a painful condition it’s symptoms are by far less noticeable than my Dystonia. This has resulted in me being more than happy to allow it to simmer away in the background. Often people think that the condition means I’m simply just ‘a bit bendy’. The reality is slightly more complicated.

EDS Type Three affects multiple parts of the body. In my case my skin is stretchy but tears and bruises very easily, I have multiple allergies, sublux and dislocate at the slightest thing and have chronic pain. When I talk about my subluxations and dislocations people often presume that I have to have fallen over, or injured myself in some way to cause it. This is not the case; this week I woke up on Wednesday morning to discover I had dislocated my thumb in my sleep. I laughed so much at this because it is frankly a ridiculous situation to find yourself in.13184635_898295980296182_140464853_o

Whilst the EDS and Dystonia are two separate conditions they impact each other. My jaw spasms will often result in a dislocation, this happens more and more frequently. Previously the two conditions acting up at the same time would have been enough to set a seizure off. It’s a worry I have in the back of my mind frequently, there is always a chance that the next dislocation will result in me seizing in an ambulance. However, despite a recent increase in dislocations I am currently just coming up to six months’ seizure free; which has me thrilled to bits.

Chip; Dating Disaster 4

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.

Excitement and Nervousness

Living with Dystonia and my other medical conditions guarantees that no two days are ever the same. I learnt that a long time ago. Yet two years into it it and it can still shock me. The difference in me when you compare last Sunday to today is astounding! Last Sunday feels like a life-time ago, not a mere week. Last week I was confined to my bed all day, so ill that a member of my family was with me all day, today I am pretty much pain free, hardly spasming and enjoying every second of it.

Last week it was as if we had taken me off all my medications. I was blind, every part of me was spasming. My jaw spasmed to the point it eventually dislocated! There are not words to describe the pain I was in, or the pain caused by attempting to swallow pain killers and muscles relaxants whilst in that state. At points the only way I was able to communicate to my mum was by twitching a finger to let her know I was conscious but my body was out of my control. It was hell. I have not had a day that bad in such a very long time.

Today I have no pain medications in me, I am able to move about without setting another part of my body off. The only parts of me that are daring to play up are my neck and jaw. This is not surprising as my Botox injections are due Tuesday. However considering that fact I am feeling extremely happy and lucky that they are not spasming more than they currently are. Its as if Benedict is still recuperating from last weeks attack.

I have started treatment for my Chronic Neurological Lyme Disease now. It shall be extremely interesting to see which of my spasms were due to the Neurological Lyme, and which are caused by the Dystonia. Hopefully over the next few weeks I shall start to see improvements and get an idea of what spasms I shall have to live with and which ones I don’t. I’m extremely excitement but nervous!

 

 

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