Sorry…..I really haven’t been on here as much as I want to. Thank you to those of you who have been following my journey.
I’m really struggling at the moment. I haven’t been well since Friday last week, my right eye has been shut pretty much continously. (For those of you who think this is no big deal tape your eye shut for 24 hours and see what its like. I think you will probably manage an hour before you decide you have had enough).I’m suffering with double vision as well. I’m very weak and any movement is sending my heart racing. Being on my feet is causing me to feel like I’m going to pass out.I’ve been taking the mestinon but my eye refuses to budge. If I up the dose, I feel like its too much and my body shakes like crazy. My right eye lid looks bruised. I’m at the end of my tether with feeling this way.
I don’t think I’m depressed, I have none of my normal signs well pre undiagnosed MG signs, like sleeping in the day or waking ridiculuosly early or crying all the time. I don’t want to withdraw from people and the thought of leaving the house doesn’t fill me with dread. Its just a low mood, which I always get when I have a flare up, like now.
I’m just seriously fed up with not being able to do the things I used to. Just simple things like hoovering the stairs or changing the beds. Sometimes its more adventurous things like driving or taking the dogs out for a walk. I feel so trapped in this utterly useless body. I feel fine but when I go to do something it betrays me.
I will be completely honest some times I do think it would be easier if my life ceased.I wouldn’t have to face this torture, my husband wouldn’t have to worry about me all the time and could get on with a normal life. My parents wouldn’t have to worry about me from one day to the next.
That solution would be easy for me, but not those around me. It would have a bigger impact on their lives than I care to imagine. It would ruin their lives. I care too much about them to hurt them in that way. Plus I’m a coward and couldn’t do something that would hurt.
I have to say just because I think about it doesn’t mean I’m suicidal. It doesn’t consume my thoughts every minute of everyday. These thoughts come when I am bad like this, because without treatment I can’t see things ever getting better. I don’t want to spend the next 30-40 years living like this, a half life. The thought of it fills me with dread. So I do what I always do, limit myself to one days pity party and move on.
I think days and thoughts like this are pretty normal when you are suffering from a chronic illness, its just not many people care to admit they happen. People want you to stoic and cheerful in the face of adversity, but they’ve not walked a mile in your shoes. How can they judge without the experience of it? There is a pressure on those of us who live like this to continually pretend that we are ok, we even lie to other people that have the illness to say we are fine. Its just part of chronic illness that you don’t talk about it. You also worry that people will get bored if they ask you how are you? and your constant reply is crappy. You worry that this perceived negativity will push them away. So you dare not admit that ideally you would like to curl up in a ball in a darkened room and wait to get better. People dont understand that.
Tomorrow I will probably wake up and feel better about everything, I may still have ptosis and double vision, but my mood may have lifted. If it hasn’t I will distract myself and get myself out of it.