On the 7th Day of Christmas…


Again, I so sorry to have missed another day for the ’12 Days of Christmas’ – again, yesterday was a bad day so I was unable to get the opportunity to write a post.

The 7th ‘Day of Christmas’ asks us to write about a physical activity or sport that we are thankful for whilst living with a chronic illness.  I suppose for me, I am thankful for the ‘AeroPilates’ machine that I together with my Mum.  Conventional exercise such as aerobics, or even sports such as hockey, netball or football is no good for me due to the weakness in my legs, I am unable to stand or even walk for very long, so any forms of exercise is very difficult for me.



This is why I am so grateful for the ‘AeroPilates’ machine as I am able to do exercise without worrying about my legs giving way, as all the exercises I am able to do whilst lying down.  The machine also comes with a rebounder, which is like a mini trampoline which fits at the bottom of the machine – with this, you are able to get a cardiovascular workout, and can even get your heart rate faster than jogging on a treadmill.

So, with the ‘AeroPilates’ machine I am able to get a full body workout with one machine without the worry of my legs giving way potentially causing a serious accident! This is especially important for a condition like mine, as without exercise, the muscles that are already weak can go into atrophy – making them even more weak, and leaving me with the inability to use these muscles.  As my doctor says ‘use it or lose it’!  Thanks to the ‘AeroPilates machine’ I can!!  I have seen no real improvement in terms of my legs becoming stronger, and have been getting worse, but hopefully with exercising regularly on the machine the weakness won’t progress even further.

And for that I am ‘chronically’ thankful’!


Exercising: When it is it too much? And Upcoming Celebration

Hey Everyone

So, have been really good lately, and have gone on the new AeroPilates Machine nearly everyday – the minor day missed because I have been too unwell or have had other things going on so didn’t manage to ‘fit’ it in during my day.

It has mostly been going well, think have gotten to grips with most of the exercises which were difficult to start off with – and boy, can you feel it working!! However, I have found myself feeling extremely tired afterwards and with my legs feeling extremely weak, sometimes not even been able to get back up straight away afterwards. During a particular exercise, you are required to put your legs in these straps and to raise the legs 90° in the air, on doing this however I am finding that my legs jerks and shakes, similar to what happens when the doctors are checking my reflexes, it used to just happen with my left leg as it seems to be weaker but has just started happening with my right leg too, and have started seening it happening with my arms when doing some of the arm exercises.

Does this mean that my legs are starting to become weaker and my arms are beginning to become weak also?? Just great!! Now my Mum is telling me constantly not to overdo it on the AeroPilates but whilst I am on there I don’t feel particularly tired, so how am I supposed to tell when enough is enough?? To demonstrate how the AeroPilates machine works here is a video from YouTube with some of the exercises that can be done on the machine:

On a happier note, this week I will be celebrating my 26th Birthday – and whilst it is supposed to be a lovely celebration surrounded by friends, going out perhaps to a local nightclub or bar, I however will find myself alone for some of the day whilst Mum and Dad are at work. Having this kind of ‘disability’ I am finding it a struggle to find someway of celebrating, given my condition and how it affects me especially considering how it often leaves me feeling fatigued, extremely dizzy and with legs so weak I am unable to walk or stand for very long. I have however been invited to a local Resource Centre where I volunteer to celebrate my day – although it will mean having to get a taxi from my house to the centre and back again.

Yet, another disadvantage of having such a disability – having to really think things through before going somewhere and planning the journey and all that comes with it instead of being able to just go out and do.



Unsure of the Path I’m On…

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…