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I went and I conquered!

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The prompt reads as given:

Health Activist Choice Day 1…Write about what whatever you want today!

I thought long and hard about what I wanted to write about for today’s post.  As we all know living with chronic illness is like riding a rollercoaster with a number of highs and lows; and unfortunately many of these are lows.  However as much as I struggle living with my neurological condition, I try my best to remain positive despite it, and so therefore I would like to write about an achievement that I have finally managed to accomplish.  As most of you may know, due to my neurological condition (a long-standing brain stem lesion) one of the main symptoms that accompany the said condition is severe and constant dizziness.

The dizziness, as we have found out is triggered by certain visual stimuli, such as large stores with its open spaces, high ceilings and fluorescent lighting.  This therefore, restricts me into where I am able to shop,  for example the clothing store Next, which also happens to be my favourite clothing store.  A few years ago, a Next opened up in a local retail store near to where I live, however, I was unable to shop in there because the store itself would trigger the dizziness and vertigo, and as a result make me feel very unwell.  When my carer started working for me, approximately fifteen months ago, we made one of my goals to be able to go into the store that was one of my favourite retailers.  Over the months we have tried and tried to no avail; sometimes we got as far as the door but the dizziness became so intense that we had to go straight back to the car.

However, last Thursday on a whim I decided that we should give it another try. As we are due to go on holiday soon, I still need some new clothes to take away with me and seen some clothes that I liked whilst browsing their website.  I have to admit, I love browsing their website and their delivery options are fantastic, for example you are able to order certain products by 9 PM and have them delivered the very next day.  However, there is a delivery charge, and when you order as much as I have done over the years, it really adds up.

I did it! I managed to go into store, and what’s even more is that I managed to shop and browse their lovely clothing and accessories for nearly an hour! And even managed to buy a couple of items!  I cannot describe the sense of accomplishment that I felt when I paid for my items! I actually did it! I defeated the dizziness and vertigo; pushed through and won.  I admit, there were a couple of moments that I nearly collapsed, and even went back to the car at one stage; and apparently at one point I even went green when the dizziness became so severe it made me feel very sick.  The trembling in my legs was also quite severe, but I took along my wheelchair which made it much easier; and even when I was just pushing the wheelchair it have me a sense of stability, and at least I didn’t have to contend with the worry of my legs collapsing beneath me.

I really have to thank the entire staff of Next at the Talbot Green Retail Store, who really made the experience much easier and were very helpful towards me and my situation.  One staff member noticed how unsteady I looked and offered to open up one of the cash registers to save me from queueing.  And the members of staff who diligently looked for items that I was looking for; going up to the stockroom to show me some of the options that were in stock.  It is fantastic customer service that really helps when suffering from a chronic illness or disability and more than makes us more likely to return.

So, I managed to conquer a very debilitating symptom and managed to physically shop in a store which I love.  Now, I have done it once, I look forward to many more visits to Next…

I hope you have enjoyed the new blog post!  Have you conquered any fears or battled through severe and debilitating symptoms to accomplish something that you have wanted to for so long? As ever I would love to hear your comments and stories of triumph over our symptoms and conditions!!  Feel free to share below in the comment section…

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In Chronic Illness

Weekly Photo Challenge: Growth

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Growth can be defined as an increase in some quantity over time.  The quantity can be physical (e.g. growth in height, growth in the amount of money possessed).  However it can also be abstract or metaphorical (e.g. a growth in one’s personality or psychological development.  And it is the former that has based the inspiration for this week’s photograph:

 

 

This was a picture taken at the recent ‘Life 4 Living’ Party and the subject of a recent post entitled ‘How Do You Solve a Problem Like…A High Ceiling’ .  As you may remember the party took place in a large hall with a high ceiling, which as you may recall is one of my main trigger for severe attacks of vertigo.

Before, my diagnosis my first instinct would have been much more leaned towards the flight part of the flight or fight response and would have left the room.  However on thus occasion and whether it is now due to the knowledge of why I was feeling the way I did and why, I managed to stay at the party for the entire 3 hours despite the vertigo and nausea!  That’s what I call growth!!

What does growth look like to you?

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In Chronic Illness

How do you solve a problem like…a high ceiling?

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Sorry for the lack of an update this week – truth be told, I haven’t had the greatest weeks with most of it spent lying on the sofa with the comfort of a quilt and watching endless hours of television (or at least trying to!!) feeling particularly dizzy, weak, nauseous and with frequent episodes of the ‘room spinning’ motion.

It started Wednesday evening and I believe that the deterioration in my condition was due to the afternoon I spent at ‘Life 4 Living’; a local group I attend every week which promotes enjoyment, positivity and friendship.  Don’t get me wrong, I love my time at the group, and is something that I really look forward to, however, this week we had a local singer coming to the group to perform and so we left the confines of our usual room to conduct the session in the Day Centre’s Main Hall.

Now as I may have mentioned before that one of the triggers that seem to affect me much more than anything else are high ceilings.  The very first dizzy spell I experienced was in a DIY Superstore with vast ceilings and being in a place with high ceilings can bring on an attack of vertigo, causing my vision to become out of focus, balance becomes even more unsteady.  I have no idea why these places affect me so much but they just do – if anyone knows any such explanation I would love to know!!  The ceiling wasn’t particularly, much lower than what you would find to expect in a superstore for example, but as there was dips within the ceiling itself – progressing from higher to lower and so on just threw me for a loop – as if it was too much visual stimuli for my brain to process!

Unfortunately for me everywhere and every new store that is opening up seems to be big vast and open as well as the problematic high ceilings – as if the world I live in now no longer is fit for me, a lot of places coming out-of-bounds for me and my condition, nowhere being accessible for people ‘like’ me.

My Nemesis!

We had prior warning to the change of venue and knew what it was like in there beforehand so I was able to bring my Mum along for support and to help me if taken unwell. On a positive note, I did manage to stay in the hall for the entire group session (close to 3 hours) but even so I uncomfortable and unwell the entire time, and my balance was really bad also – thank god Mum was there to get me drinks and to help me get my food from the buffet.  As much as I did want there, I just wanted to enjoy myself with my Mum whom I do not get to go out with anymore on account with the severity of my symptoms as well as the awkwardness of spending a long amount of time out causes due to the weakness in my legs, and Mum was also looking forward to seeing the singer perform so didn’t want to spoil it for her.

The most embarrassing part came towards the end of the afternoon when coming to leave my legs seized up on me causing me to crash to the floor!! But still a good time was had by all!

And since then, I have really gone downhill, legs weak I have hardly been able to stand and generally feeling weak and lethargic – as if those three short hours just took everything out of me.  So here’s to a quick recovery in time for volunteering Monday and especially to the next meeting of ‘Life 4 Living’!!

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How I Got To Where I Am…

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Well, thought it was important to give some more information regarding my journey of me and my condition.

I was born in 1986.  Odd thing was, that when I was first-born the doctors thought there was something wrong me then… a nurse noticed that I held my legs rigid, which apparently is something which newborn babies are not supposed to do…

The doctors sent me for a brain scan when I was 2 days old… but nothing was found.

So, in any case had a pretty normal childhood, well, apart from my intense phobia of heights.  All of the experts say that phobias are learnt, however, I never had a bad experience with heights… strange thing is when I was a baby, my Mother took me for a check-up at the doctors.  When she tried to put me on the bed that you have at doctors’ surgeries, I started to scream and instantly grabbed onto my Mum  and wouldn’t let go.  Instinctively, she put the baby mat on the floor and laid me down… and I stopped screaming!!  Seems as if I have had a problem with heights from birth.

I remember from childhood, I also had a problem with standing on anything which is even slightly high up – even those long benches you find in gymnasiums which aren’t even that high from the ground… it was like whenever I stood on one I was unable to focus properly and felt like everything was moving sideways…

Then at 8 years, old during a trip to a DIY store I had my very first dizzy spell… felt as if everything was moving and that if I hadn’t grabbed onto something I would surely fall.  Had a few attacks after that, so was sent to the doctors’ for tests… all came back normal.  Noticed that the majority of dizzy spells that were happening to me was brought on in places which had wide open spaces and especially those with high ceilings.  Even now I have major problems being in places which are very open and those which have high ceilings… the current train of though of why these type of places bother me is some a problem with perception and how the brain processes information being received from my surrounding environment.

Anyhow, as it became more frequent I became panicky and anxious when these attacks would occur – I was only 8 and hadn’t a clue what was happening to me?  And as the doctor’s couldn’t find a cause I was labelled with an ‘anxiety disorder.’

Fast forward several years, and the dizziness had become much more frequent and wasn’t able to go anywhere without the aid of another person – managed to complete a Psychology Degree but had to have support to do so, such as having a ‘Buddy System’ in place taking me from lectures and a designated place where I was picked up by someone.  As the dizziness became more frequent, I knew deep down there was something wrong other than an anxiety disorder and had to fight to get referred to a neurologist who eventually diagnosed the long-standing brain stem lesion.  And in terms of the spastic paraparesis – have always felt stiffness and weakness in legs especially during sports at school and when walking – but always thought it was normal as I hadn’t know anything different!!

Anyway, that’s all for now.  Please feel free to leave a comment below.

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