So whats it like?

Im often asked by people to describe what its like living with this disease. Its very hard to explain, because unless you have lived with it, its very hard for another person to truly understand.

Today for example I awoke with both eyes shut and I was unable to open them. This is the first time this has happened on waking. I have had bilateral ptosis before, but never first thing in the morning. Luckily I keep my mestinon beside the bed so I just had to fumble around until I found it. Once I had taken the pill and waited for 30 minutes both eyes opened. But sometimes one pill isn’t enough.

Ok so you might think not being able to open your eyes isn’t that big of a deal, but what if you need the toilet? Or you are home alone as I am? The only way I can see in this situation is to either hold my eyes open or to tape them open. Neither option is very comfortable.

Other symptoms I get on a daily basis are double vision, again not a big deal. But what if you are trying to climb stairs, cook a meal or even send a text message. Im lucky that I know that the image on the left is the correct one and I can normally work my way around it. In the beginning though I had to just go to bed and close my eyes until it went away.

I also have bouts of nystagmus (rapid jerky eye movements). This gets so bad that I just can’t see. My eyes just refuse to focus on anything and just jerk around in their sockets. Again the only thing that you can do for this is to lie down and close your eyes. Trying to function when your eyes are behaving like this just leads to extreme nausea. Your eyes send messages to your brain which in turn sends messages to your inner ear which controls your balance. So if your eyes aren’t focusing on anything you end up feeling sick.

Due to the unpredictability of my eyes I can no longer drive.

Most of the time I feel incredibly weak. Its like having a set of weights tied to each limb. You shake with fatigue on every movement. Standing in the shower has become impossible, I have to use a shower stool. Standing to do the dishes – no I have to sit on a stool. Holding my arm out to change channels on the tv with the remote can also be a challenge.

Every day is a constant battle on deciding on what I will compromise on. Do I dry my hair after a shower or will that mess my arms up for the day? Do I try and do some cleaning or will I not be able to walk and get myself to the toilet for the afternoon. Every physical action has a physical consequence.

You can usually tell how Im feeling by what Im wearing. If Im in my pj’s I haven’t got out of bed. If Im wearing a tracksuit I should be in bed, but I feel so isolated up there Ive got up. The rest of the time I try and avoid anything with buttons. My fingers just cant cope with them! So its jeans that are too big around the waist so I can pull them up and down avoiding the flies and button. I also wear fleece jumpers so I can just pull them on and off.

Breathing is also an issue for me. Some days it feels like an elephant has sat on my chest and I can’t take a deep breath. Doing anything physical can leave me fighting for breath. My pulse sky rockets up to 145 -160 bpm and it takes a while to recover. Today I tried a test that they use to assess your breathing. You take in a deep breath and then as you exhale you count out loud. Normal people can get anywhere between 40-50. I managed 17 with great difficulty. I noticed the other day when talking with a neighbour I couldn’t complete a sentence without taking in a breath. It can be scary at times.

My speech can be affected, causing me to sound like Im coming down with a cold or I can start to slur and people assume that I am drunk. I answered the telephone once when my speach was bad and the caller said “your drunk” and put the phone down on me. My voice can also become very quiet or non existent. My tongue can also become weak causing me to not be able to form words. When this happens I have to speak very slowly so that my tongue has time to catch up. It can be embarrassing, but luckily people that know me understand.

The only thing I can just about cope with is using the internet, but there are some days that I can’t even manage that. It could be that I can’t physically lift the laptop, or that my fingers wont work to type or it could be that my eyes are playing up so I can’t see the screen.

Luckily I have made friends with people all around the world and I am part of forums on numerous topics. That gives me something to do with my days, which at times can be very long and lonely.

I started this blog to give me something to do and as a kind of therapy. I thank the lord that I live in this digital age other wise I would be truly alone.

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