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HAWMC Day 1: Health Time Capsule

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Well folks, April is finally here – the sun is shining and flowers are blooming, Spring is definitely in the air – and of course begins the Health Activist Writer’s Month Challenge courtesy of WEGO Health. A challenge in which I have to write a post for every day in April – being provided with prompts that I have to write about.

Today’s prompt says the following:

Pretend you’re making a time capsule of you and your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it.

Okay, so first thing, according to Wikipedia, a time capsule is defined as:

“…a historic cache of goods or information, usually intended as a method of communication with future people…”

Sounds easy, right? However, I have had some difficulty – as my condition is not common and seems to be rare, especially as I have come across very little information regarding it and have not found anyone else living with the same condition as me. Although I take several different medications, none of which really treat my condition or its symptoms, they merely ease the severity of the symptoms.

So, to start I have decided to place a letter intended for whoever happens to find the capsule – a letter introducing myself, about my life, hobbies, interests, and of course, about my condition – the medical jargon, the symptoms and how it affects me and my daily life. Perhaps, also including transcripts of my blog posts to gain extra insight into my condition. My journal would also be a great tool to learn more about me and my condition, one which fully dictates everything I go through day in and day out, as well as thoughts and feelings, pretty much everything about me!!

Also, have included two letters – a referral letter and the other the first appointment to see a hospital consultant. You may be wondering why, but I think it would be interesting as part of social history to compare the waiting lists from the past and the present. What would the people living 2112 think of our waiting times to see a consultant? Would they be shocked at how long they are? This is also of some interest for people living in the UK considering the recent discussions into the reforms of the NHS. Whether the reforms will make any difference to the length of waiting times remains to be seen.

I have also included a visual aid to represent one of the main symptoms that I experience – dizziness. And I have represented the dizziness by placing a spinning top into the time capsule.

Perhaps when the person who opens the time capsule will get dizzy when looking at the toy spin round and round. Maybe then they will be able to appreciate what it is like to live with it 24/7 like myself.

I have placed my degree certificate and transcripts in there – to show that even when living with an invisible and life long condition, it does not have to stop you from achieving something great.

My crutch is something else that is going in. A mobility aid that helps me in my daily life, as my legs are weak and have trouble with balance, it helps (or at least tries to!) maintain my balance and so I don’t fall!!

Another problematic symptom that I experience is due to the spastic paraparesis, causing stiffness, heaviness and tingling sensations in my legs, and of course weakness which often leads to my legs giving way on me. However, this is obviously a symptom which nobody can see, so it lead me to ask how I would represent this in my tine capsule? Then I remembered, a nickname that I was given a while ago – Bambi!! Yes, I have been given a nickname based on the Disney who at the beginning on the film is unable to stand on his legs, falling over as he tries to – not unlike me when my legs are weak and they collapse from under me. So I have placed a cute cuddly toy of Bambi to represent the spastic paraparesis.

And I have also included a butterfly – something that I love to represent me. Love the symbolism of them – that they are free beings, able to go here and there, something that I wish I could do. And of course, they start off as something else and transform into something beautiful. Perhaps, that is what happens when we become ill – that we transform into a better version of ourselves.

So, that is my time capsule!! I think that when someone in 2112 will open this, they will probably be very baffled!! Although, for many years I think I have baffled many doctors as getting a final diagnosis was quite a battle.

Where would I hide the time capsule?  Well, it would probably hide it in the vast field near my house – it would be nice that somebody who in the future who’s living in the street where I am now would find it.  Can’t imagine that it would end up in a museum or anything, but even if it’s just to educate someone about the complexities of the brain, and the problems associated with neurological conditions, and those conditions which cannot be seen.

Hope you have enjoyed the first post and would love to hear any responses and thoughts you may have, don’t hesitate to comment.

What would you place in your time capsule??

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In Chronic Illness

Unsure of the Path I’m On…

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Hey Friends

Me again, for another post to my blog.  Hope all of you are OK.  I have to admit, lately I am struggling – feeling down, alone, sometimes I feel as if I have no friends or no-one that I can turn to – although absolutely no idea as to why I have been feeling like this…

May be down to the deterioration of my condition – the dizziness, which has been constant for some time now, seems to have become more intense, as well as the episodes of vertigo becoming much more frequent, and are often times are worse to deal with than the constant dizziness, especially when you take into account the visual disturbances – vision becoming foggy or blurry and unable to focus on anything, sometimes not even being able to recognise what I am looking at.

As well as that, my legs seem to be gradually becoming worse too – experiencing many ‘drop attacks’ in which my legs suddenly give way from under me, with no warning.  That is the one of the hardest things to deal with also – the unpredictability of it all – going out perhaps, not knowing whether my legs will collapse, and when you take into account that often I find myself often unable to get up after these ‘attacks’ making plans to go anywhere becomes very difficult.

Take one example: on a Monday, I volunteer for a local Mental Health charity, which I have done for a couple of years now.  So, on my way, my Dad takes me to a local supermarket to go and buy some lunch, and last Monday was no exception.  However, whilst  buying my lunch, my legs gave way, and like on several occasions found difficulty in being able to get back on my feet again as my legs were so weak, and felt as if they were trembling a lot, so consequently  my Dad had to take me back to the car and buy lunch for me.  Legs never really recovered after that, so felt as if I wasn’t much use at the Centre, but often is nice just to get out of the house for a few hours.

Later on, had another appointment with the doctor.  Basically, told him of all the difficulties I have been having, the seemingly progression and deterioration of the condition, etc.  And once again was told “unfortunately, with conditions like these it isn’t much that we can do, and  no drugs are going to help with the weakness…”, basically another way of saying “There isn’t anything we can do, you just have to live with it.”  Mum even asked whether there was any possibility that I may need to use a wheelchair in the future, and the doctor just nodded his head in agreement, that may be my future…  I was shocked and a little upset, as I honestly never really thought that I may need one, people have said that maybe I should, but never really thought that I may need to actually us one, more so for going out, as still need to use the muscles so they don’t atrophy.  But if I need one, then so be it, as there are worse things in life, hey?

I have been often told that I need to exercise and make use of the muscles as often and as much as I can, however, as I am unable to stand for very long, it makes finding any forms of exercise that I am able to do very difficult, my legs and problems with balance and co-ordination, etc. My exercise bike has been increasingly difficult to use as often feel that I am going to fall off, and the Wii Fit that we have does not often recognise me during some of the games as when you are required to stand still, my body is swaying back and forth…

However, I have recently bought a machine that hopefully may increase the strength in legs (although isn’t  guaranteed that it will work) and also keep me fit and in shape.  It is called an Aeropilates Machine  –  a machine that incorporates pilates exercises with a resistance machine….

AeroPilates 4695 4 Corded Machine and Cardio Board
AeroPilates 4695 4 Corded Machine and Cardio Board

“Pilates was invented by Joseph Pilates in the 1920s as a way of incorporating a full body workout to build muscle and core strength. Over time pilates has come to be the preferred means of exercise for a wide range of people from athletes and dancers to those with common household injuries like injured backs. It’s benefits are wide-reaching and provide not only fitness and toning, but also help with injuries that you might have. An aero pilates machine apply the basic principles and effectively ‘super charge’ your workout so that you reap the rewards of pilates with an aerobic workout that aids with blood flow and muscle growth.”

Anyway, I’ll be off now, doing some exercises on my new AeroPilates machine – fingers crossed that I will see some benefits soon…

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In Chronic Illness

Fighting the Battle…

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Hey Everyone

Haven’t posted in a while, for which I apologise for, but lately am finding things so tough as of late.

The symptoms that I experience with my condition – as I have mentioned before:

  • Dizziness
  • Stiffness and weakness in legs (Spastic Paraparesis)
  • Sporadic episodes of vertigo with visual disturbances such as double vision, tunnel vision

All these seem to worsening… for example, a couple of days this week my legs were so weak that I could barely stand, and as a consequence most of those days were spent in bed watching mind-numbing day-time television, or listening to audio books – I love reading but the visual disturbances were so bad that I really was unable to focus on a book, and after several recommendations from others in a similar position to mind, bought some audiobooks to pass the time when I am having bad times and unable to read.

My legs were trembling so bad, a feeling similar to when your legs feel like jelly when you are nervous, that I just was unable to stand for very long, so really was unable to do much at all and realised how much we all take for granted – going for a showers, making a drink or lunch for ourselves, and so on.  The dizziness was also very intense, as I have mentioned before the dizziness is constantly there, but the intensity of it changes from day-to-day, sometimes moment to moment.  The way it makes me feel is as if I am totally unbalanced, and unable to ground myself, and when standing I can literally feel myself swaying back and forth.  The episodes of vertigo, however differs in that they are episodic, and so come and go (although are becoming much more frequent) and with the vertigo comes the sensation of the world moving, for many it feels as if the room is spinning.  However, I would describe it as everything moving back and forth, and often includes tunnel vision.

As I was so bad my parents pushed me into making another appointment to see our local GP.. after some thought I have made one, although I just get this feeling that I am just wasting the time of the doctor, as it has already  been said that there is nothing that can be done, so it there much point in going?  Should I ask to see the neurological consultant again, even though they are unable to do anything for me?

And on top of all this – it’s also the emotional impact living with a chronic or life-long condition, the feeling of being alone, that no-one else understands what you are going through.  The isolation of being in a room by oneself, no-one to talk to…

Feelings of loneliness and isolation...

Through all of this, not being able to go by myself, in case of a fall or if the visual disturbances come on with no warning, leaving me unable to really focus on where I am (dangerous and could lead to an accident), it has left me very lonely and with no friends, apart from my online support network which is fantastic, but just wish that I could live a normal life, and do things with someone else such as shopping, or going for a cup of coffee, etc.

However this is the card I have been dealt, and maybe there is a reason why ‘this’ did happen to me., and am meant to do something with everything I have dealt with or have learnt from all of this… Now I just need to find the answer and what I am able to do with my life….

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In Chronic Illness

An Introduction…

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Hello to my first post of my brand new blog.

Just a little about me … I am 25 and from a town in South Wales, United Kingdom.

A little over a year ago, or is it two??  Anyway, I was diagnosed with a long-standing brain stem lesion.  What is that you ask?  Well, to answer that question, a lesion is by definition any abnormal change involving tissue or an organ through disease or injury. With mine, it is basically scarring on the brain stem.  The brain stem being the part of the brain that sits right on the bottom of the brain connecting the brain itself with the spinal cord.

Diagram of the Brain

Am not sure  about all the technical jargon involving the brain stem, or indeed exactly the part of which the scarring is located.  But for me, the lesion causes, and has caused since the age of 8 chronic and disabling dizziness – the sensation that the world around you is moving, for many this sensation feels as if the room is spinning around… although for me it generally feels as if my world is pulsating back and forward… back and forward.  And the general feeling of disequilibrium… not of being stable, as if at any minute you are going to fall.  For example, when standing up, and for many of you, you can stand there completely still like the Queen’s Guard you see outside of Buckingham Palace.  However, in my case I am unable to stand still, and instead my body sways in a back and forward motion.   The dizziness used to come and go in sporadic episodes, but now as my brain has changed and grew my illness has progressed and now I am in a state of disequilibrium 24/7.  The vertigo or ‘the sensation of the room moving’ comes and goes in episodes, although these episodes seem to be much more frequent than they have ever been.

The brain stem is also important for balance, and unfortunately for me do not seem to have much balance!  As a consequence I fall regularly and am unsteady on my feet… so if you ever see me on the street, I am not drunk, OK??

As well as those issues regarding balance and the dizziness, I also suffer from something called ‘spastic paraparesis’.  Spastic paraparesis causes muscle stiffness and weakness in the legs, in some cases, which has started happening with me can affect the arms also.  The SP has meant that my legs have become very stiff, making it difficult to walk and causing discomfort and pain and as they are weak I am unable to stand for any more than 10 to 15 minutes before they collapse from under me.

Well, that’s it for the first post, folks!  I’ll be updating whenever… more about my condition, more about me, commenting on stories that affect me, that kind of thing…

Hope you enjoyed… and feel free to comment too…

 

Origin of Image: CancerHelpUK

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