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

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Wonky But Happy

“Hmmm that’ a nasty dislocation to have long term, take some morphine.”

“When you next see your neurologist, if I were you I would discuss having your botox more regularly. This degree of deviation, pain and dislocation on a regular basis is not good for you.”

“Wow. Ehlers-Danlos, and Dystonia. You couldn’t have asked for a worse combination of conditions there.”

“Are you sure you don’t want to go the hospital? I’m sure the A&E department will listen to you this time. I’ll even write you a note.”

These four word-for-word quotes from different health professionals give you an insight into the last week and a half of my life. My botox has worn off a couple of weeks ahead of schedule around my jaw, the rest is still working well, so overall I’m pretty happy. However this does mean I’ve been experiencing regular extreme spasms and dislocations in my jaw again, which in turn has an impact on my ability to talk, eat and drink.

Whilst my ability to communicate using British Sign Language is steadily improving, I took a trip to the doctors to get a prescription for some painkillers and muscle relaxants, as I’d like to eat, drink and talk in as little pain as possible. Whilst I have access to oramorph this is my last resort medication, and not something I am willing to take around my son unless it is an emergency. The doctor couldn’t quite believe the predicament I was in, let alone get his head around the fact that I did not fancy sitting for a couple of hours in my local A&E at a hospital that has repeatedly provided the wrong treatment despite direct instruction from my neurologist. I stated to him that as I don’t respond to local anaesthetic I would much rather take the painkillers and muscle relaxants at home and relocate my jaw myself when the spasm eased off. At this point I think he would have dragged me to the hospital if he could have.

We discussed at length (well I scribbled out for him what I was attempting to convey) my botox arrangement with my neurologist. It stunned him that I was willing to put up with these spasms for a further two and a half weeks. The moment was an odd one, with me not really in a great place with my distorted face, twisted neck and dislocated jaw to protest that actually I was doing great, but then he didn’t know me six years ago when I was bed bound, he didn’t even know me a week beforehand when my botox was working well, so I can see where his concern comes from.

At the time the above four quotes drove me nutty. But I know I’m easily wound up when in pain, so I can’t say that I am surprised. In reflection, whilst my jaw still is causing me significant pain from my current dislocation I can see my progress in pain management and self-care; which is an element I am proud to have improved on.

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February Update

I’m truly ashamed of how long it’s been since I last posted on here, that one blog post a week goal went out the window! But I’m still here ticking along desperately trying to find a moment in the day to sit down and share with you all where I’m at. The joy of being in my final 9 weeks of university, along with having a 9 month old baby & another book to write however means I really don’t seem to have enough hours in the day anymore and unfortunately regular updates have had to be postponed. I do intended to get back to a weekly format asap.

So what’s going on with me?

My Dystonia alien is being regularly forced into submission thanks to good old Dysport injections. I’m currently exploring how different exercises can be used to help in the management of the condition so please feel free to contact me with any articles you recommend or if you want to share what’s worked for you.

My optic neuritis has finally improved and I am waiting to see my lovely neurologist in April to discuss the results of a new MRI and Evoked Visual Potential tests. I’m hoping for the usual “nothing obvious to see, but we expect that with Dystonia” response.

My Tourette’s like symptoms have been slightly more prominent lately and I would love to hear from any spoonies with this/symptoms similar to this. The word ‘lemons’ escapes me far more often than I care for in a day and whilst this is manageable I’d still like to hear from others about any ways of calming it. Naturally this will be another little chat with the neurologist in april.

I’d like to take a quick moment to thank the many people who emailed me their thoughts/prayers etc after I shared my diagnosis of postnatal depression the other month. My PND I feel was the result of extremely poor and traumatic antenatal care*, after several hard months I feel like I am turning a corner. I cannot express enough how much hearing from so many of you who wished to share with me how you navigated PND helped me to feel less alone during a time where my emotions and anxiety where crippling me. Thank-you.

*Some elements of my antenatal care were perfectly fine however overall without going into detail it was a traumatic experience which need not of been so. Complaints were logged with the trust at the time.

Here we go again

I don’t even know where to begin. My head is all over the place and honestly I feel more than a little bit miffed with my body. Here we are at the start of another year and I’m already waiting tests results for yet another diagnosis. Yup you read that right ANOTHER diagnosis, not an alternative or differential diagnosis but another brand spanking in all its inconvenient glory. In 4 to 8 weeks I’ll have my answer and until then I am meant to carry on as normal.

Usually that’s doable but right now I feel pretty defeated. I know this feeling will pass and that I will cope just like I always do however what I am currently experiencing is consuming, depressing and suffocating.

So here we go again. Distraction techniques in full swing and disney soundtrack blasting.

Body Meet Osteoarthritis

This week I found myself sitting in the preop clinic of a knee replacement clinic. On my arrival it didn’t take long to piece together where I was, and even less time to start panicking as to why I was there considering I was expecting to see the Orthotic department not the surgical team.

The Dr I’d been assigned was lovely and surprisingly familiar with the majority of my conditions. I was pleasantly taken aback to discover that they had scheduled all the xrays and scans into the appointment time slot, so I was carted off down to X Ray where my knees, hips and ankles were x-rayed from multiple angles (so far I’ve just had the results for my knees). Having these pictures taken took quite awhile as trying to get my knees and and toes all pointing in the right direction is a rather impossible task. I got the impression the radiographers were not used to my host of conditions as my uncompromising feet proved quite the problem, and by manipulating them into a forewards position my knees subluxed!

So far the x-rays have revealed that I have Osteoarthritis in my knees and that really I need new knees, however due to my EDS that surgery is extremely unlikely to provide any long term relief so my surgeon wants to delay it for as long as possible. So for now the plan is to try to shift as much weight as I can to ease the pressure on my joints and delay the surgery. Whilst the diagnosis is disappointing it explains the pain I’ve been in for the last few years. I’m just keeping my finger crossed the x-rays won’t show it in my hips and ankles too.

Before I sign off, Spoonies it’s cold outside! Please if you find you are affected by the cold spend that extra spoon wrapping up warm or having a longer bath. Practice self care. This time of year can be hard, I know I’m suffering, so be kind to yourselves.

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Mental Health & Chronic Illness

Mental Health awareness day was last week and I wanted to write this blog post then but honestly it was too hard. My mental health right now is not great. I’m by no means awful but it’s not where I’d like it to be. It’s been an accumulation of being chronically ill for numerous years and stressful life events adding on top of that.

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A major part of the problem right now is my medication. One of the many side effects that many of my medications can cause is anxiety and depression. Whilst I wouldn’t class myself as depressed, I am aware that my anxiety and amount of pain attacks have increased recently and I’m defiantly on the weepy side. However life events haven’t helped either, Just last week I went to collect my little boys prescription from the chemist and found myself being motioned to sit silently on the floor with him due to a lady with a knife ransacking the place; this understandably has made me anxious about leaving the flat on my own, even though I know that I am being irrational as I know that the chances of being in that situation again are very small.

Yesterday I attended the emergency eye clinic at my local hospital and was informed that I have my fourth bout of optic neuritis is a year and a half. Due to this and some more symptoms they have made the decision to refer me to a specialist neuro and carry out testing again for multiple sclerosis; another spanner in the works.

Between my physical & mental health plus the stress of uni work, I feel like I need to let myself have a good cry, pick myself up and carry on except there isn’t time to cry. Don’t get me wrong I love my life but I’m finding it hard to know what to do to help myself. I force myself to do what scares me like leave the flat but it’s draining working up the courage to do so. I would talk to the doctor about it but I daren’t risk it as I know they will stop my painkillers if they start worrying about depression which I need for my seizures. I have ordered myself a mindful mediation manual and CD and hoping that a holistic attitude will help.

Fiery Fury of Flare UPs

Being chronically means I live with the knowledge that at some point, someday I will have a flare of one or more of my conditions. I could go months without one and then have several back to back, or they could be fairly regular. Flare ups are unpredictable, sometimes it’s obvious as to what caused them, and other times there seems to be no rhyme or reason to them. Managing them is a joke. Other than knocking back the muscle relaxants and painkillers the only thing to do is try and ride it out.

I’m currently in the middle of an Ehlers Danlos Syndrome Type 3 and Complex Regional Pain Syndrome flare up. Agony is not a strong enough word to describe the sheer amount of pain that I am in. I knew my EDS flare up was coming, my pain had been getting dramatically worse over 72 hours and it felt like I had battered every inch of my body. What I wasn’t prepared for however was my CRPS to act up.

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It’s hard to communicate to people who don’t have CRPS exactly what type of hellish pain it is. The only way I can think to describe is this. Imagine you have several vegetable peelers the width of your leg, someone is dragging all of them down every millimetre of your leg with excruciating slowness. Digging the blade in to the point it reaches your bones. This evil being has a partner in crime, who is simultaneously pouring vinegar into your open wounds whilst dropping lit matches on to you. On top of all of this is Benedict the Dystonia Alien who is rejoicing in contorting your leg in every position imaginable heightening the pain further.

This pain is constant. Its at the point were it feels like a miracle if I manage 5 minutes without crying. My oramorph only makes a slightly dent in the pain. Sleep is a distant memory as my leg is ravaged with mind boggling pain.  All I can do is hope and pray that this flare up ends soon and does not once again become a fixture in my day to day life.

5th Blog Birthday

Happy Birthday Dystonia and Me!

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Can you believe it’s been 5 years of blogging already? I can’t quite wrap my head around how quickly this has come around. It feels like just last week, I searched for a webhost desperate to spread awareness of Dystonia after feeling like I was floundering in a sea of uncertainty with little resources to pursue in my quest for answers. Now I confidently tackle my condition head on and happily refer people to resources  I have come  to know and trust.

When I started blogging it was completely in the mindset that it would be purely to raise awareness. Over the last 5 years this has evolved to be a space where I can openly and honestly express myself without fear, safe in the knowledge that someone out in the vast vacuum of the web will be able to relate to what I am going through. My blog has become a site for awareness, expression and connection; I cannot get over how many online friends  I have made. Whilst I am sad that so many of you have to live with this life altering condition, I am thankful for each one of you that has become a vital part of my day to day support network.

Over the last few years this blog has been nominated on several occasions for awards, won one, and even become a resource that several neurologists hand out when diagnosing new patients (this still flatters, astounds and thrills me). I’ve had other sufferers pounce on me with hugs and their stories at hospitals; I love this, it shows me that I am doing something right.

Just a few years ago, reaching this milestone seemed ridiculous. I didn’t know how to live each day let alone 5 years with this hideous condition. Now, several diagnoses later, I have learned to find joy and laughter in my spasms, to treasure every moment that puts a smile on my face and be thankful that drs like my neurologist exist, for without my neuro my world would be darker (literally). So instead of being disheartened that 5 years on I’m still battling, I’m lifting my chin, defying my alien and celebrating each little success.

Here’s to another 5 years.

Spoonie Issues; Postnatal Complications

I’ve been toying with the idea of writing this post for a few weeks. It’s a tad on the personal side, but as I find blogging so therapeutic I figured it may help to write it all down. As you know almost four months ago I gave birth to my handsome smiley boy. It’s  been a whirlwind few months since and I love being a mum. However I’ve been experiencing complications ever since and after my last doctor’s appointment I feel a bit shaken up.

With the exception of 5 days (spaced out) I haven’t stopped bleeding since I gave birth. At first I put this down to the fact I obtained a second degree tear during my labour that took a long time to heal.  I frequently wonder if its related to my EDS but Mr Google hasn’t shed much light on that. I’ve tried hormone medication designed to prevent the bleeding but other than causing further hellish stomach pains it didn’t make a difference. I’ve now been prescribed a new medication to make me clot more whilst I wait for an urgent appointment with the gyny team.

It’s been decided that I need a procedure to look around and see if there is any obvious issue that hasn’t already been picked up on my scans that have been carried out over the last couple of weeks. My Dr’s advice has been that if the scan doesn’t show anything obvious that can be treated, then she recommends that I have a serious chat with the gyny team on having a hysterectomy. I find it hard to believe that at 24 years of age that a hysterectomy is my only option. In my mind that just isn’t an option and there has to be others.

I struggle with my conditions day to day as it is, throw in recovering from major surgery and the complications that come with that procedure and it doesn’t seem worth it. As you can imagine I’ve been quite wound up about it; I would love to hear from anyone who has had similar postnatal complications, and if you don’t mind sharing I would be curious to hear what treatments you tried.

New Adventure

As many of you may remember in the summer of 2016 I attempted having a little part time job, this backfired on me when my employer refused to make reasonable adjustments and my body went into an extreme flair up.  At the time this wasn’t too bad, but it did leave me pondering as to what I realistically could do.  In February this year I moved in with my wonderful partner, now as you may or may not know such a milestone negatively affects benefits.  I’d been on ESA for quite a while, but moving in with Dame left me £400 worse off each month. The government’s current system presumes that your partner can A) earn enough to be able to afford to be the sole provider B) Is happy to financially support you.

A £400 drop in my income was quite significant as you can imagine.  So I’ve been wracking my brains as to what work I could do that wouldn’t leave me spasming and seizing in a hospital bed. I’d heard about Younique, a high quality skin care and makeup company that would allow me to set my own hours and work from home. In all honesty I thought it was to good to be true, but this week I took the plunge and messaged a fellow spoonie to get her take on the business. She spoke extremely highly of it, and knowing that someone in a similar health situation to me could make it work gave me home.

So here I am now. Today is the start of my 10 day online launch party, and I’m feeling incredibly excited by this opportunity. If you’d like to see what I’m doing then click on over to https://www.facebook.com/smilesparkleglow/. Fingers crossed that this adventure will be just what I need.

Chronic Lyme Disease – An Open Letter to the BBC

Dear BBC

Today you published the article ‘Matt Dawson: I had to have heart surgery after a tick bite’. At first I was thrilled, it is always uplifting to see articles highlighting this condition being shared by the mainstream media. However as I eagerly absorbed each sentence , I could feel my heart sinking further in my chest. In fact I’m pretty sure it dropped straight out of me and into the flat below under the weight of my disappointment! You could have taken this opportunity to really highlight the world wide issue when it comes to diagnosing and treating Lyme and Chronic Lyme Disease. The fact that you didn’t leap at this opportunity is beyond me. What happened to the BBC being at the forefront of reporting, challenging the establishment, pushing boundaries?

You even went as far as mentioning that if Lyme goes untreated it can go on to attack and cause ‘debilitating neurological problems’. This was your perfect opening to delve into the devastating condition that is Chronic Lyme; you could have examined how the tests for Lyme disease are extremely inaccurate and false negatives are a frequent occurrence; you could have investigated how NICE guidelines have left the few doctors who are up to date enough with the research in the area to believe in Chronic Lyme, unable to treat their patients without risking their medical licence. You could have mentioned how, if you are in the unfortunate situation of having to fundraise money to pay for your treatment, you are looking at a minimum of £10,000 for private medical bills and that there is no guarantee that you will be cured. You could have investigated how many people that are given the early treatment are actually, years later, successfully cured.

I was bitten by a tick at the age of 6, at the age of 22 I was diagnosed with Chronic Neurological Lyme Disease. Almost 3 years on and I am still fighting. Last year I was informed by neurologists that they were 99% certain I had MS, but then my MRI came back clean, when I brought up Lyme my case was swept under the carpet. Sufferers are abandoned, left to battle their own way through the system, made to feel like a fraud whilst their lives and their health fall apart. Unlike your report suggests, it’s not as easy as walking into a hospital and stating you have Lyme and hoping for treatment. It feels like a life sentence.

I am living that life sentence.

 

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