Physical Supports Made It Possible...

Hi Everyone!

I’m so sorry I haven’t posted in a while. As you’ve seen from my Exciting Announcement video, I have begun to reduce my medication so Dan & I can try for a baby. We’ve also been on holiday, which you can read about here. Something else happened & that is what I’d like to focus on in this post.

Before Dan & I went on holiday, I took part in a concert with one of the local orchestras. I went to music college to train as an oboist but, because of a shoulder injury I had not been able to play for more than a year - this is the result of my Ehlers-Danlos Syndrome Hypermobility Type. This was really tough for me & I was initially terrified at the prospect of playing again! As a result, I put off practicing because I was scared to further hurt my shoulder. Once I did pick up my oboe I was only able to play for 5 minutes (rehearsals are 3 hours long, with an additional rehearsal on the morning of the concert!).

My physio suggested me finding something to support my my arm outward. I remembered that my Dad had a support that he had to wear when he had his shoulder operation. He still had it, so I gave it a try! I can’t describe the support properly, so it’s probably best I show you…

This worked really well for playing my oboe, but my part in one of the three pieces included a second instrument - the core anglais. Unfortunately, Dad’s shoulder support wasn’t practical for this as I was unable to reach the reed to play!

My physio was amazing! I turned up with everything in tow! I showed him how the oboe worked with the support but not the core anglais & we worked together to find a solution. We devised a sling that I could use when playing the oboe but take my arm out of to play the core anglais & kept the section of Dad's support that my arm was able to rest on.

For a number of years I have also used a Koiman thumb rest - this is an ergonomic thumb rest that distributes the weight of the instrument across the whole of the thumb, rather than at just one point. Getting this changed my playing ability dramatically, so I thought I would share a few pics of this too!

This allowed me to do something I’d not thought I would be able to do again - to play in a concert. I can’t put into words how thankful I am to my physio!

Things may feel impossible, but you never know what the future holds!

Have you ever received support that’s allowed you to do something you didn’t think possible?

Tania Xx

Why I Wear Precision Tinted Lenses

Hi Everyone!

So you may have noticed a little change to my profile pic. What’s more obvious than the change in the length of my hair is that I’m wearing my precision tinted lenses. I thought what better way to address this than in a post on my health blog.

You may have already read my 'Embracing My Differences' post, discussing the blogging persona I created & why it wasn’t a true representation of myself. I was going to wait until launching my parenting blog to change my profile pic (along with a new blog design), but a couple of things made me re-think this. So I thought I’d use this post to tell you a little about the three reasons I wear my glasses. Where relevant, other posts will be linked. I don’t want to talk too much about the lenses themselves & the colourimetry test that is used to determine the colour of the lenses, as I am planning a video to focus purely on this.

Me on the way to an event - I'd never have been able to go had it not been for my glasses (the hat helped minimise the amount of light my eyes were exposed to aswell!)

Migraine – I suffer with Photosensitive Basilar Type Migraine, a rare form of migraine that affects the area of the brain situated at the base of the skull that is responsible of consciousness. What this means is that my chronic migraine (I’ve had a constant migraine since I was 11) can cause me to loose consciousness. The photosensitivity is the trigger that aggravates my migraine & is the sole reason for my loss of consciousness. I have two migraine posts, one on 'What Are They?' (symptoms) & 'Casuses & Triggers'. I plan to write a post specifically about Basilar Type migraine soon.

My migraine was the initial reason for my getting precision tinted lenses.

Mears-Irlen Syndrome – A visual perception disorder where the visual pathways between the eyes & the brain are interfered with by certain wavelengths of light. This condition is also known as Scotopic Sensitivity Syndrome, Pattern Glare & Visual Stress.

Dyslexia – Dyslexia is specific learning difficulty. I am both visually & aurally dyslexic. For me, this means that I have difficulty processing both written & spoken communication. As a result, my memory is poor (not helped by my migraine & other chronic pain either!). I can read a passage out loud or listen to spoken instructions & remember very little of it. I filmed a video on 'My Experiences With Dyslexia' for #DyslexiaAwarenessMonth.

I don’t think it would be an exaggeration to say that my symptoms for each of these (symptoms is probably not the best word when referring to dyslexia but lets roll with it!) are at least twice as bad if not more when I’m not wearing my glasses compared with when I am.

So that’s why I wear my glasses! I wouldn’t have been able to do numerous things if I didn’t have them. I count myself lucky that I was able to get them & that my family, friends & school were so supportive.

I wanted to be able to share the real me with you all, as you’ve always been so supportive of me!

Tania Xx

P.S. Precision tinted lenses can be used for a number of other conditions too!

Walk A Mile In My Shoes Before You Judge Me (Or Anyone With Chronic Illness)!

Hi Everyone!

The aim of this post is two fold. I want to get my feelings down on paper & then move on. The other it to let people know that they are not alone – whether it be people judging them as to how sick they are, commenting on their weight or anything else where one person is made to feel bad about themselves. I’m also hoping this post will get people thinking about how their actions might be perceived by others, even if it is not in the intended way.

I’m in the initial throws of another phase of fatigue. I’m sure you’ll all be able to understand how much the situation I found myself in upset me.

I popped in to Lidl to pick up some chocolate, as it’s the only place I can get chocolate that doesn’t contain dairy & is a reasonable price! I buy in bulk so I don’t have to walk down too often, particularly in the cold.

The staff know me by sight as I’m in there at least once a week. The assistant on the till today asked me if I had a sweet tooth, a friendly question. He followed it up by saying he was surprised I had any teeth left! Still in a friendly manner. I told him that I crave sugar because of my meds. “Fair enough” he said.  “Not really” I replied, “I’ve put on 2 & 1/2st as a result!” All very friendly. It was at this point the woman behind me tutted!

I know looking back on it, she could have been tutting about anything. It really felt it was aimed at me though.

As I walked home, my brain was going into overdrive with thoughts like like ‘how dare she?’ & ‘what does she think gives her the right to judge me!’ It was this last thought that prompted me to write this post.

She doesn’t know me. She doesn’t know how ill I was before I started on Gabapentin. She also doesn’t know that I have lost 12lb & at my heaviest was 11st 10lb!

At the end of the day, if I dwell on her judgment of me it will only upset me, which won’t solve anything. This was something my Dad used to tell me when I was upset & I’ve only just been able to understand its importance!

So I’m going to put my Dad’s advice to good use by writing about my experience & then forgetting all about it. My friends & family accept & support me. Why should I care what other people think of me!?! After all, you could be the juiciest, ripest peach & there’ll always be someone who doesn’t like peach!

Have you found yourself in a situation where you’re being judged because of your condition?

How have/would you deal with it?

I hope you’re all having a low pain, low fatigue day!

Tania Xx

How Much Harm Could A Bottle Of Water Cause???

Hi Everyone!

As you may be aware, I have recently been diagnosed with EDS-Hypermobility Type/Hypermobility Syndrome, a connective tissue disorder. I do plan to write a little more on this, but for now, please do check out my lovely friend Chloe’s video 'Hypermobility Syndrome/Living With Chronic Illness' to learn more.

I was walking down the road on my way to work last week, rucksack (light) on my back & a (750ml) bottle of water in my hand when I dropped my water bottle. This event shouldn’t have been of any significance but it was.

I don’t know which was the cause & which the affect, but as I dropped my bottle of water I felt a sharp shooting pain in my shoulder. As this pain moved into my neck, I debated turning round & going home. I didn’t know how I would get through a day of teaching in the amount of pain I was in.

Whilst walking to the train station the pain continued & moved into my neck. By the time I reached my first school my shoulder, neck & upper back were in significant pain. I sit at reception for about ½ an hour because of the train timetable & the music practice room being in use when I arrive. As I was sitting there I was still debating going home. Somehow I made it through the day, but by the time I reached home I was unable to lift my arm above shoulder height.

I’m sat writing this 6 days later & though the pain is reduced, it has been constant. I’m teaching today & tomorrow, which makes it difficult to rest. The thing that really gets me though was that it was a water bottle! A WATER BOTTLE!!!!! Seriously!?!

Only an EDSer could do something like that!

Have you suffered any injuries that seem so ridiculous they could only happen to someone with a medical condition?

Tania Xx

PoTS - What Is It? (Symptoms)

Hi Everyone!

So I thought, as I’m being investigated for Postural Orthostatic Tachycardia Syndrome (PoTS) it would be good for me to outline the condition to have a reference point for other posts.

PoTS is one of a number of conditions covered by the umbrella term ‘dysautonomia’. Dysautonomia occurs when there is an abnormality in the autonomic nervous system (ANS). Bet you weren’t expecting a literacy lesson! The ANS is responsible for all the bodily functions that occur without the need for thought, such as your breathing & the beat of your heart.

Normally when a person stands up, their heart rate & blood pressure increase to counteract the forces of gravity. For those with PoTS, this mechanism fails. This can cause a number of symptoms, including:

Dizziness

Fainting

Fatigue

Palpitations

Shortness of breath

Excessive or reduced sweating

Digestive problems

Migraine

Poor sleep

This is by no means a comprehensive list and is intended as a guideline and basis for my future blog posts. If you suspect that you may suffer from PoTS, please consult your GP.

Tania Xx

Useful rescources –

PoTS UK. www.potsuk.org. © PoTS UK, 04/01/15

Healthline: Autonomic Dysfunction, Christine Case-Lo. www.healthline.com/health/autonomic-dysfunction#Overview1. © 2005 - 2014 Healthline Networks, Inc. 04/01/15