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

Posts tagged ‘Ehlers Danlos Syndrome Type 3’

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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Contemplating Dating

For the last eight months I have been frequenting the same coffee shop several times a week. If the sofa is available, I curl up in the corner of it whip out my notepad and will scrawl away for hours on end quite happily. It’s my routine, and one that I thoroughly enjoy. Spend enough time in places like this and you easily fall into habitual conversations and friendships with other coffee lovers.

The other day whilst lost in my thoughts, one of the regulars, Mr. Latte we shall call him, came over for our usual chat. Towards the end of our talk he asked if I’d be interested in going on a date and getting to know each other better. It was a lovely offer, and normally I would not hesitate, after all what do I have to lose? This time however I did pause. There have been so many occasions in the last year were I have watched my illnesses blow up a date in seconds; which is fine, it means time is not wasted, but it’s emotionally exhausting. Putting my conditions aside, I could not help but wonder how I would handle it. After the events of the other week the idea of being out with someone I only vaguely knew was not a pleasant one.

I find myself rather irritated by my reaction. When did I start to let my health and fears control me?  I have always been the person to say yes and jump on board. This momentary new attitude isn’t the person I am, and is one I refuse to allow to become part of me. My stumbled over “I’ll think about it”, is not something I’ll do again. If I want to do something, then great off I go, if I’d rather not then fine, that is also great. Saying either yes or no is okay, but I shall not be this indecisive person any longer.

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.

Hospital Post

Receiving post is a very everyday aspect of life. Normally it’s not something that I would get over excited about. Every now and then though there is an exception. I received today three different types of support splints that the hospital had decided to order for me. The team I was under in the hospital witnessed several of my dislocations and noticed general issues in my hands and feet that could be improved with ease.

Three of the four splints arrived this afternoon. Two are designed for my wrists and thumbs. Part of the issue with EDS is that the brain does not always know exactly where the joints are. These splints help provide feedback to the brain along with stabilizing the joints.

The third splint is a gel ankle brace. If there was an Olympic medal for ankles giving away and falling over, I would take the gold every single time. My ability to fall down curbs, over thin air, and up the stairs is impeccable. The gel supports on both sides of this will cushion the joint whilst aiding stabilization. My skin breaks very easily due to the EDS so this design should work wonderfully with my skin.

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I am hoping that the splints as a way of treating the EDS, and my upcoming Botox injections, should mean I spend less time hugging the floor.

Inpatient Program So Far…

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…

I’m Not Sorry…

My blog post earlier in the week sparked conversation on social media which is something I love to see; it also got me thinking. When I inform a date/potential date that I’m ill, I almost always apologise. I don’t quite know why I say sorry. Perhaps it is because I know that I’m not exactly what you see, but who really is, or maybe it is an automatic reaction to help deal with the social awkwardness that I’m feeling and attempting to suppress. I am awful for stuttering out an apology whenever nerves take hold.

This is a quality of myself that I can control. A rather refreshing thought. So after a period of reflection I’ve decided I’m no longer going to apologise for my conditions. They are part of me, good and bad. If I can learn to see the humour in them, then others can too. That’s not to say I won’t profusely apologise if I spasm and hit someone, of course I will – then again I’ll also probably laugh.

I feel quite delighted with my decision. Taking another step, and embracing my alien just that bit more.

An Exciting Month!

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!

Winter Precautions

If you had sat opposite me and my friends on the bus yesterday chances are you would not have had a clue there was anything wrong with me. When I shuddered, and my friends asked in hushed tones if I was cold, you would not have paid a second thought to it. In reality that shudder was my body trying desperately to twitch but failing due to the injections, my friends whispered question was simply because they know that the cold aggravates my Dystonia. I currently walk around Oxford like a human marshmallow, swaddled in layers, with my gloves, hat and scarf on. My joints are already painful most days. I compensate for this though, my bedroom generally feels like a sauna.

Winter is coming. For many Dystonia, EDS and other spoonies winter impacts their chronic illness, causing spasms, pain flares etc. Managing your symptoms gets harder and if you’re anything like me and run head first at every challenge your condition presents, then you’ll find that with winter you’ll crash and flare more often. Symptom diaries are a fantastic tool to keep. Learning what you can do to keep on top of your health is the best approach you can take.

I know that in winter If I go out with no gloves and only one pair of socks, I am going to spend the day apologizing to all the people I pass in the street as I’ll accidentally hit  them when I twitch. It’s humiliating, and avoidable if I just remember to wrap up. If my room gets to cold I know I shall spend the night in agony with my body spasming. Again this is avoidable. I may not be able to prevent every single spasm, but I can definitely prevent the worst of them by taking sensible measures.

So please all you amazing spoonie warriors, wrap up this winter and don’t put yourself at risk!

Botox injections

Today I was up in London to see my neurologist to get my six weekly injections. I was looking forward to speaking with him as this time round my botox had been 7 weeks apart. Normally this would have resulted in severe facial, neck and arm spasms but for a change I have been okay. It is only over the last few days that I have felt the familiar tugging sensation around my eyes, jaw and neck. Whilst I have had spasms in these areas it has been easy to cope with. My arm has been spasming/twitching more but still at what I consider an acceptable rate, so I was eager to discuss with him aiming for 7 weeks again. Now as luck would have it he’s not working that day in 7 weeks time, so my appointment is as usual in 6 weeks, but this something I would like to aim for.

I am not fond of needles at all. In fact watching the doctor draw the botox up each time is enough to make me want to run screaming from the room. Every 6 weeks I turn up at the hospital racked full of nerves, if the injections did not make such a big difference on my quality of life then I don’t think I’d go. I trust my neurologist completely however, and after two and a bit years of having him administer my injections I feel confident in his skill. You can imagine how sky high my nerves rocketed today when upon arrival I was informed that my neurologist was absent. The doctor filling in for him was perfectly pleasant, however having never met him before, I found it hard to sit still in the chair whilst he injected me.

Today was my first round of injections since developing Complex Regional Pain Syndrome. On my GP’s advice I tried covering the area that was going to be injected on my back with topical local anaesthetic. I find it hard just wearing clothing over my shoulder/arm at the moment so was dreading having a couple of needles being inserted. As I have mentioned before I have Ehlers Danlos Syndrome Type 3, this unfortunately means that local anaesthetic does not work for me. I had been hoping that as it was a topical one and not an injection that it would be slightly different and would work, however I discovered very quickly that this was not the case. I cannot describe what my arm has felt like over the last few hours, it has been a mix of a burning and pin and needles sensations. I am hoping that this will die down as the evening wears on.

Hopefully my neurologist will be at my next appointment and we can discuss our next steps.

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