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:
- 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…
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….