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

Posts tagged ‘social media’

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.

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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.

 

Redefining Pacing Parameters

Since my latest flare up began I’ve been taking extra care to make sure I acknowledge my accomplishments no matter how small each day and attempting to redefine my pacing parameters.  This is a key tool for me to keep in mind at all time. Mainly as it enures I acknowledge my further limitations during a flare up and act accordingly, but also as it keeps me focused on the positives and prevents me getting tuck in a emotional rut which often occurs in flare ups.

I had a wonderful opportunity as part of my publishing internship yesterday to direct and film an interview with an author signed to the publishing house. It was a fantastic experience that I thoroughly enjoyed.  However like all things it required spoons, and far more than I had anticipated. Despite my lack of spoon saving preparation I got through the day relatively intact and the repercussions didn’t kick in until today.

This is where I feel like I’ve made leaps and bounds in handling life with chronic illnesses. I didn’t attempt to struggle through the pain today, or go to the other extreme and do nothing (although sometimes this is needed); instead I decided we would go about our day as planned but I would use my wheelchair the whole time, with baby snug in his sling against me, and Dame pushing me rather than me risking dislocating a joint or three by self propelling.

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We only nipped out for a short while as avoiding over stimulation is key on days when I feel my health is on a downward kilter. So a relaxing jaunt to the local coffee house and then onto Waitrose was our plan. I was quite overjoyed to find a wheelchair friendly trolley. A rare treat, that has quiet made my day.

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“Who Is That Guy?”

After receiving several messages across various social media platforms regarding the pictures I’ve been posting, I figured it was time I addressed them. The quick answer to your questions is I found a really great guy.

Who is he?

Meet Damon, my ridiculously wonderful boyfriend. He’s rather fantastic, and sees my chronic illness as just part of me being ‘unique’. Whether I’m twitching and hitting him, panicking about new symptoms, or worrying about hitting my preorder requirements he’s supportive and helps to keep me grounded and calm. He has an ability to make me giggle no matter my pain levels, and understands that I would always much rather laugh at my conditions than make a big deal out of it.

Is he Coffee shop guy?

Nope he isn’t. However, our first date did start off in Costa Coffee. We sat across from each other and had a fab laugh before heading down to the local museum where I promptly spilt the remainder of my coffee down the front of my jeans. He had to spend the next few hours walking around with me looking like I had had an accident. Luckily Damon is equally as clumsy as myself, so laughing off incidents like this is a frequent occurrence.

How come you haven’t blogged about him?

Well I have mentioned him briefly in a blog a couple of weeks back. But I decided to hold off on blogging about him whilst our relationship developed. I’m blessed that not only does he understand that I don’t want my illness to hinder my life but that I also need to pace myself (which as you all know I am rather terrible at). He is really good at reminding me not to use my spoons up, and checking that I am physically up to whatever we have planned that day.

Making The Most Of This Life One Spoon At A Time

My list of chronic conditions is an ever growing one; Dystonia, EDS Type 3, Non-Epileptic Seizures, Postural Hypotension and more! The list of hospital appointments is just as long. As I was diagnosed with each one I felt very much as if I were being forced to pause and take a step back in life. Almost as if I had no choice but to fail at achieving my goals. That may seem over dramatic, but it was a very real, very overwhelming emotion. Learning to accept life as spoonie was and still is a challenge. As I have mentioned before I have developed an attitude of watch me achieve everything you tell me that I won’t be able to. I shall achieve and aspire to all my dreams.

When I was exploring signing with my publisher I noticed that in their facts and questions page that they recommended if you were ill, waiting until you had recovered before going down this publishing path, because it is hard and a lot of work. Now obviously this is referring to recoverable conditions, hence why I skipped over it.  For my novel to be published I have to achieve 250 preorders, otherwise it won’t be able to go ahead (https://www.britainsnextbestseller.com/beta//books/?id=55). So for the next six weeks I have to put a lot of work into advertising and self-promotion via social media. Self-promotion may sound like an easy task but when one eye isn’t working and your body is dodgy anyway you tire easily. I know many of you know the feeling. This is when I adore Facebooks scheduled post function, it’s fantastic for when I need a quick break.

The next six weeks are going to be manic, and nerve wracking. However, it’s also exciting. I’m keeping my fingers crossed that I can achieve, despite everything , and manage to hit the 250 requirement! If you are a love of fantasy then you can order my debut novel here https://www.britainsnextbestseller.com/beta//books/?id=55

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Social Media Shocked By Attractive ‘Undateable’

Last night Channel 4 The Undateables aired again. How this show is still running is beyond me. Whenever it is on  social media is lit up with viewers making remarks that they deem to be humerous, but in reality are rude and disrepectful about the disability of the personality appearing.The shows title in itself represents the many issues with the show. As long as you label someone with a disability Undateable then how are you going to break down the barriers around it?

Today papers and social media are running mad with the fact that a young man on last night’s episode is a rather handsome chap. I’m sorry, but what?! Why is there an expectation in life that to be disabled you must be hideously disfigured, wheelchair bound etc. Some disabilities are invisible,  some of us appear ‘normal’. Shows such as The Undateables are doing very little to break down the barrier and stigma that surrounds people with health conditions of any type.

It is for this reason that I turned down their offer to appear on the show when they approached me; I sent them a detailed response explaining why, they replied by providing me with contact details for if I changed my mind. I stand by my decision now more than before especially after the response to lasts nights episode. It is appalling to see that society is shocked that disabled people can be attractive/Datable too!

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.

The Ballet of I’m Fine

I’m very aware that today’s blog post may come across as me being grumpy, I assure you I’m not! I’m quiet cheery really. However I want to discuss a certain topic that is often glossed over when it comes to chronic illness. I like to refer to it as the Ballet of I’m Fine. We sufferers are experts in the dance, but it is one that we resent pirouetting to with a passion. Too often I see across the social media platforms people airing their feelings at having being cast in this ballet once again. But what else are they to do? Far too often we are acutely aware of people not wanting to know if we are anything but fine. It does not matter to them if our limbs are hideously distorted due to spasms, if our speech is slurred and our sight impaired. They are willing to blindly over look what they can see in front of them, as long as we dance the same old dance.

Well, why should we?! Let’s be honest here people, my ballet shoes are hardly ever worn, I air my illness through my blog. Yes I wish I didn’t have my conditions, but I do and I’m doing my best to raise awareness and carry on with life. So please excuse me if I retire from the Ballet of I’m Fine all together. I have been guilty of smoothing over my illness before to people I know would rather not hear about it. But enough is enough, the dancing shoes are going in the bin.

Chronic illness is not something to be ashamed off. We should not be living in the shadows with life passing by. So we are slightly different, we are unique. That simply makes us interesting. Instead of staring at me in the street, I would much rather you politely inquired as to what was wrong. I would love the chance to educate more people on the condition.

To you folk who care enough to truly listen to how we are holding up, you don’t know how amazing you are!

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Dystonia Awareness Week

From today to the 11th of May is Dystonia Awareness week! To celebrate it and help spread awareness I have taken apart in the Go Green for Dystonia campaign. I decided that I would do this in a similar way to last year and have dyed a section of my hair green for the week (luckily it will wash out quickly).

Photo: Green streak in my hair and wearing green for Dystonia awarness week.

I have a of couple awareness activities planned for this week besides being part of the Go Green for Dystonia Campaign. The first of my awareness activities is to do a blog every day, minus today’s entry I plan for each one to focus on a different aspect of Dystonia and how they can impact on day-to-day life. On Wednesday I am running an Awareness event at my college which I am really excited about, it’ll be a fantastic opportunity to educate lots of people on the condition and raise a bit of money for The Dystonia Society.

I have also signed up to Thunderclap, which is something all of you lovely readers can get involved with too! Thunderclap sends out an awareness message via your Facebook/twitter/tumbler (depending on what you choose) at 1:30pm on May 9th. It’s a great way to spread the word about Dystonia. Even Stephen Fry has signed up for it! If you would like to join in here is the link https://www.thunderclap.it/projects/9777-dystonia-awareness-week.

 

 

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