Thursday 25 October 2018

October is Dysautonomia Awareness Month.

October is Dysautonomia Awareness Month.

So what is dysautonomia?

Dysautonomia refers to a disorder in or with the autonomic nervous system. This is responsible for things like heart rate, blood pressure, digestion, kidney function, temperature control and more, basically all the bodily functions that occur without having to consciously things about it and it affects every part of the body.

"People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, and abnormal heart rates. 
Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted. There is no cure for any form of dysautonomia at this time but there is research bing done."
There are several illnesses that are caused by dysautonomia. I don't have any particular dysautonomia disorder but I am affected by dysautonomia due to my M.E. and HSD. I have a low blood pressure and faulty heart rate which leads to dizziness, light headedness and fainting. I also struggle with temperature control, especially feeling cold all the time and finding it difficult to warm up and my digestive system is slowed down too. 

Although there is no cure there are things that can be done to help manage my dysautonomia I take electrolyte supplements, and I've had to get over my dislike of salt and increase my salt intake and eat smaller meals. The idea behind smaller meals is that the you have a big meal all the blood goes to the digestive system leaving less blood for the rest of the body causing symptoms like dizziness and light headedness. Changing my posture too like when I lie down can also help.

Tuesday 23 October 2018

One Second Every Day: October 2018 - Week 3

So recently with a combination of being more poorly than my usual chronic illness self and little to write about I've fallen out od sync with keep up my weekly journal and 'one second every day' project but I'm trying to catch up with that and restart my journal and get back on track with my blog.
  • Monday 15th October - Quiet day at home. Managed to have a little bath and remembered this time to put the boiler on (it's currently broken so we're keeping it off as despite the radiators being turned off they're heating up) so I had a nice hot bath unlike the shower I had last week where the hot water ran out mid shower! I didn't realise that I had ran out of cream yarn for my crochet blanket so made an order for that and just made circles so I don't fall behind and watched more Pretty Little Liars on Netflix which I'm hooked on at the moment. At the moment my care agency are offering me a free ½ hour call as i'm been feeling a bit low and lonely at home so today I didn't feel up to going to the co-op so instead we took a drive to Tesco and posted a few letters there then came home.
  • Tuesday 16th October - Rigid muscles spasms have been playing me up today. I managed to get breakfast and dressed before they started to play me up but  when they started I could do very little. Thankfully my care supervisor from my care agency came round to do my 3 monthly care plan update and Dennis is amazing and he got me my meds, a tumbler of juice a coffee and made me a sandwich, all things I would have gone without if he hadn't of been there which he said just supports my need for Continuing Health Care as my symptoms are so unpredictable. Eventually they eased and I took a break from the TV to put some letters together as I'm going to the post office tomorrow. 
  • Wednesday 17th October - I had to wake up a bit earlier today as I had my Bluebird call at 10.30am. Tracy came and we headed to the post office and I posted some letters and a parcel and then we headed to Specsavers. Thankfully I had nothing else urgent to do as we was there for over an hour as last week when I had my home eye test I felt pressured into getting my glasses there and then but I wanted to look at what they had in store. I chose some different frames so hopefully I'll be able to get the ones I picked out today. I also got my current glasses adjusted as they where rubbing behind my ear. We was planning on going for coffee afterwards but we was so long in Specsavers Tracy nipped off to get the coffee for me. The reason I had my Bluebird call earlier today was because I had a teleconference meeting with the Royal College of Psychiatry which I am a member of the Child and Adolescent Public Education Board (or CAFPEB for short), so I got a quick sandwhich when I got home and then I've just spent the past few hours in the teleconference. I'm not panning to just chill out as I'm tired and my mind is a bit boggled from the teleconference. I have the the Bible Course at church tonight and I'm hoping I have the confidence to go as I haven't been back to church since the last bible study session where I had a prolonged seizure and ended up leaving in an ambulance so its taken my confidence a huge bashing.
  • Thursday 18th October - Had a nice chilled out day. Got on with some crocheting and making good progress with my blanket accompanied by coffee and Netflix.
  • Friday 19th October - Busy morning getting ready. In the afternoon I had my follow-up appointment with Dr Sally Moorcroft, a private Integrative Medicine Dr I've started seeing. I'm giving it a go and keeping an open mind about it and just seeing if it can help. She's prescribed me some homeopathic/herbal medicines to help with things like my energy levels, muscle spasms and sleep problems. She also found that my neck muscles are very tense which may count for the increase in my Chronic Daily Headaches so when I see her next month I'm also going to have a hot shells massage on my neck and shoulders to see if that helps untense my muscles, the alternatives she suggested to that are something called Bowen therapy or acupuncture. When I got home I had a really bad headache so went to have a nap. I forgot to put my nap app on so needed up oversleeping and waking up around 8.30pm and thinking it was the morning, I must have needed the sleep though.
  • Saturday 20th October - Had a nice chilled out day. When I got up I sorted out my usual meds for the day and also added in my new homeopathic/herbal medicines. Today has just been nice and paced out and I've got quite a lot of squares stitched onto my crochet blanket and I'm making good progress and it's not even November yet. I've also discovered a new game on my iPad which I've become a bit addicted to. I also finally got round to ordering some more nose studs and a Paperchase order as a friend's birthday is coming up and I saw some things when I was on the website that was perfect for another friend for Christmas so very unlike me I have officially started Christmas shopping! To carry on the theme I started making an Amazon Christmas wish list.  I also got some upsetting news that someone I know and was really close to is going to pass away which was really hard hitting. I also did some organising of my medical file and made some markers for future appointments so I know what ones I've been to and which ones I've got coming up.
  • Sunday 21st October - I hardly slept but I got up and ready and made it to church. During the early hours I got a letter typed up so the afternoon was spent putting that letter together and I forgot to pace myself so I got crash point and spent the rest of the day just resting.

Gratitude list...
  • Dennis for taking the time out of his day to help me out
  • My care agency for offering me a free ½ hour call 
  • My carers
  • Coffee
  • Being able to afford to see Dr Sally
  • My fight to just keep going when the going gets tough (because I have no choice but to fight)

Wednesday 17 October 2018

October is Dyslexia Awareness Month

So October is Dyslexia Awareness Month. I've had dyslexia all my life, but it took a long time for it to be picked up and diagnosed. I have a very vivid memory of being 4/5years old and struggling with my reading homework which including the word 'what' and I was insistent that the word was pronounced 'w-hat' and my Dad was desperately trying to get me to say 'what'. 

Dyslexia is a form of 'Specific Learning Difficulty' (very different to a 'Learning Disability')

Having dyslexia doesn't mean I'm not intelligent - my brain just works a bit differently and gets a bit more scattered than other people's and I think more in pictures rather than words.

Dyslexia runs in our family - both myself, my brother and my Dad have it.

I always struggled with reading and spelling. I hated being called out to read aloud in class as people would laugh at my reading aloud ability or dis-ability in my case. What I found most frustrating was I was so bright, when it came to writing our work out my head would be buzzing with ideas of what I wanted to say but putting pen to paper was slow and very difficult and I was always pulled up for not finishing my work or for my spelling errors. Despite my intelligence I was in the bottom set for work so some of the other students that where on my table preferred to pick on me rather than do their work so I didn't;t really enjoy school that much.

Finally when my dyslexia was picked up, assessed and diagnosed is was almost like a sigh of relief. I quite beating myself up and my IQ was higher than average but for things like reading and writing speak I scored so low it wasn't on the chart but other things I scored very highly on so I was able to work with my strengths. I also got introduced to assistive technology which has been a lifeline and I got a support worker in class as well as 1:1 teaching sessions to help me with the things I found difficult. I also got special arrangements for examinations.

Some of the assistive technology I use is Dragon which a voice controlled, so I can control my computer with my voice and i can talk and it will type for me. Read and Write Gold which has lots of different features like reading out text, having a more advanced spell checker, a word dictionary, screen overlay, high lighter organiser and many more. I also use Inspiration in which you can mind map out things such as essays, blog posts etc.

Looking back I think I would have done better at education if my dyslexia hod of been picked up sooner but I pleased with myself for how far I did get without the support and knowledge of my dyslexia.

So, what is Dyslexia?
  • Dyslexia is one of a family of Specific Learning Difficulties.
  • Many people who have dyslexia have strong visual, creative and problem solving skills.
  • Dyslexia is not linked to intelligence but can make learning difficult.
  • Dyslexia is a life-long condition which has a substantial effect on an individual’s day to day activities and is classed as a disability under the Equality Act 2010.
  • Dyslexia varies from person to person and no two people will have the same set of strengths and weaknesses.
  • It often co-occurs with related conditions, such as dyspraxia, dyscalculia and attention deficit disorder.
  • Dyslexic individuals often have difficulty processing and remembering information.
- The Dyslexia Association
 Alongside the dyslexia I also have Scotopic Sensitivity, or Irlens. Some people have this alongside their dyslexia, other can have it without having dyslexia. This was picked up a long time before my dyslexia.

Wearing tinted lenses - originally it was green, then blue and now purple they help to 'unscramble' the words on a page and makes it easier to focus on the text. I also have a colour filer on my laptop, iPad and phone which does the same thing.

"Irlen Syndrome (also referred to at times as Meares-Irlen Syndrome, Scotopic Sensitivity Syndrome, and Visual Stress) is a perceptual processing disorder. It is not an optical problem. It is a problem with the brain’s ability to process visual information."
- Irlen 

Friday 12 October 2018

GUEST POST by Hayley Ann for World Arthritis Day 2018


Today’s the day, that I not only love; but I hate with that same part of me. Well, let me back up a bit. In October of 2013 I had dislocated my hip, something I was told “That can’t be possible, without an injury.” And “That I was faking just for attention.” When clearly, that wasn’t the case at all. They done X-ray, after X-ray, scan after scan, and had taken more blood than I had EVER seen in my life. Finally, for a man to walk in my room after 3 am on October 16th 2013 and diagnosed me with Juvenile Idiopathic Arthritis. This took OVER 3 weeks of being in the hospital. We (my dad, the doctor, an i) talked for well over two hours about how, and why this went undetected and undiagnosed for so long. He said “I have no idea, it’s been there all along” You see, when I was little I was a very very sick child (constantly having pneumonia, lung and chest infections, and being very prone to being sick) every time, they gave me steroids and my inflammatory markers would drop. I’d go back for a check up after a few days, and my inflammatory markers were down), back to my normal doc (that treated my asthma) several weeks later, and my inflammatory markers were sky high again. 

You see, every time my inflammatory markers would rise, they’d instantly think it was my lungs or asthma and put me back on steroids (because you know, it worked before!) So therefore no one ever done the digging as for the exact reason why my inflammatory markers were always high. They never put together my knee problems, the inflammatory markers, and the wanting to use my other hand; could be arthritis. Now, I’m not mad at my past doctors for not realizing it, by any means. That’s not what I’m saying at all. What I’m saying is, back in the early 2000’s (or very late 90’s) there wasn’t all of this medical technology around. Okay well, some of it may have been. We just didn’t have access to it in a very small town in Ohio. 

The doctor came back early the next morning and hooked me up on some medications to help my arthritis, as well as talking more to us now that we had some time to let it sink in. He said that later that day I would need at least one more test. We gladly agreed, because he was one of the only people to believe me and because of that, other doctors now believed me. After that scan (within just 10 minutes of me being back in my hospital room) he walked in to inform me and my parents that I “Passed with flying colors” which was the first time ever, that specific phrase wasn’t so good. I literally did “pass with flying colors” as it came back positive and the screen was lit up with many different colors on different bones and joints in my body. They got me back on my feet to see him outpatient and I got to go home. 

Through the many weeks, months, and even years of being diagnosed. There’s been a lot of “This is it,  this is what we’ve been waiting for!” To only be let down with something to the effect of “This isn’t good.” Or “This medication isn’t working anymore.” Or even that “I was denied for a trial, because my age (17.5) was “too young” to be considered in their 18+ age group. Only because within the 6+ months to go through the testing, meetings, blood work, scans, new doctors visits. All before I could even start the medication HAD they approved me. **Spoiler alert: I got accepted almost 2.5 years later. And once again, the medication didn’t work of me!**
Or being told “That if you try this medication, there’s a possibility that you won’t ever be able to have kids.” Or “That you’ll never be able to live by yourself, because with constant new medications, you never know when something could go wrong. “

It’s been just a few days shy of five years of this. Five years since I’ve been diagnosed. And here is what I’ve accomplished since then, because I’m #StrongerThanArthritis 
  • I’ve been a camp counselor for kids with chronic illnesses twice!
  • I graduated high school 
  • I’ve created a support group for the Chronically ill, here on Facebook
  • I co-created Spoonie Care Boxes, where we send care packages to the Chronically ill, based on their illness. (Instagram link @spooniecareboxes)
  • I’ve made some pretty amazingly sick friends (literally)
  • I’ve met some amazing nurses and doctors along the way, that truly are invested in my life
  • I’ve learned to speak up for myself. 

And most importantly 
Even when it hurt so bad, even when it takes them 8 tries to get an IV so I can have the medication that improves my quality of life, Even when I’m throwing up so much that I can’t even think straight, even when I’ve been discouraged because if I wasn’t sick I’d be in college or about to graduate from college, even when I’m told no, or that “It isn’t humanly possible” I still push through.

Honestly, I couldn’t do this If it wasn’t for the unconditional love from my dad. No matter how many times I get extremely scary or disheartening news from the doctors, he doesn’t even flinch. When I know it’s scary for him too.
He holds my hair back while I’m throwing up, gives me shots (the kind with medication, not alcohol. Nobody take that the wrong way), holds my hand when I’m having a really hard moment. Let’s me cry for enough time and then says “Alright sis, this is horrible and I know it. But you need to get your sh*t together so we can conquer this too. “
He chases down the nurses for my meds, calls doctors when I can barely get out of bed, and goes to every single appointment with me. 
That, ladies and gentlemen is unconditional love. He doesn’t HAVE to do any of this. When I turned 18, he could have said “Alright, you’re on your own” but he didn’t. He’s pretty great too!

Remember, you’re ALWAYS ENOUGH!
Keep conquering 
Love Hayley Ann