Another impeding element for me is regular light headiness and dizziness. Obviously this can be quite dangerous. Along with fatigue, it is one of the main things stopping me currently from working as a nurse. It also means that I do not drive. My feeling of independence is equal to that of a fourteen year old! Not only do I rely on people to shop, cook and clean for me, but I can’t even leave the house when I want to! I am so appreciative of the abilities I do have, because there are so many people out there that have so much less than I do. Of course, at 29 years of age however, having experienced independence and self reliance, to find yourself unable to work, drive or do most of the usual things that one does when looking after themselves, it is by no means an easy task to come to a place of acceptance of this situation! In theory, it sounds great to not have to work, or do house work or groceries, or cook dinner. It all adds up though, and those simple things that you take for granted and even begrudge, are groundings to what makes our lives interesting and filled with opportunity.
I am quite good at coping with my light headiness in that a lot of the time, people around me don’t even know that I am blacking out. I have dealt with it for as along as I can remember, so I can often keep walking or carrying out what I am doing, while my vision goes black. I know when I am having an episode that requires me to sit, and so far I have not hit the ground that I can remember! (I have certainly come close, and looked like a drunk staggering along, but I have managed to safely get myself down). I do try the usual recommendations: I drink water regularly, I include salt in my diet, I try to not get too hot and I eat regularly. These techniques don’t seem to make a huge difference, but then again, without doing it, it all could be a lot worse. Sometimes I have a feeling of ”not being here.” It is a peculiar sensation in which my body keeps moving but my mind feels like it has turned off, so for a brief while I feel like I am flying on auto and the pilot has leaped out with the parachute. I find that the only thing I can do when this happens is press my nails into my palms and try to force myself to concentrate on my surroundings, and I eventually come out of it. I have been aware of this feeling since I was a child.
Other solutions to dizziness can include making sure the people with you regularly are aware. It is so helpful when you don’t need to make a big deal of what is happening, and you can just nudge someone and they know that you just need some help; they can hold you up and help you to a seat, without a lengthy explanation of what is happening. I also keep an emergency pack of nibbles with me always, and try to have water on standby too.
Another problem when dealing with a long term illness, is cabin fever. Boredom can send you insane!! Sometimes I am struck by the fact I have no idea what I could do with the upcoming hours stretching before me. I am trying to find things that interest me that are within my current physical ability level. I have been attempting to learn more about my digital SLR camera. Upkeep of this blog gives me something to think about. I read as much as I can. My close friends are great; they understand that I can’t plan a certain activity on a certain day now, and are always flexible and accepting of a last minute change. They are also willing to sit with me in my couch world if that is all that I am up to.
It is easy to slip into a feeling of missing out and being left out, but I take strength from knowing that I at least have the ability to do some things, and I have supportive family and friends, and I have the financial ability to look after my health as best as possible. Sometimes it feels like I am at a complete dead end, and nothing is happening for me. Lately though, I have started to look at it like this: My life is a blank canvas. I have the ability to start afresh with the knowledge of who and what is important to me and I can paint it with whichever colours I choose.