Quote:
Originally Posted by Unsure81
Hi everyone - I hope your MG is behaving itself and you are all doing ok.
I wanted to ask those of you that are having success with your medication and are able to "control" the majority (or hopefully all) of your symptoms if it helped to alleviate the "psychological" effects of this disease.
To explain myself - as you are by now well aware I am still awaiting diagnosis and don't know if I do have MG despite the Dr's acknowledging there really is nothing else it could be. I know I've posted about the way I have reduced my lifestyle,(ie social life, exercise...basically anything other than work and my little girls is pretty much non existent and even those are a struggle most of the time!) and adapted my life to keep the symptoms as low as possible and to be honest - I have been doing this for 9 years with the fluctuating symptoms so almost accept my reduced activity level quite easily - despite the odd bad few days when the frustration sets in!
My main concern is the psychological impact this has had - after the illness started 9 years ago - I really struggled after being told it was "all in my head" and even believed it myself to the point that I didn't believe/trust whatever my body was telling me. So when I would be out on a day out or driving in my car and would begin to feel weaker, or get breathless/chest pressure or my eyes felt as though they were closing etc etc I was convinced that this was all in my head and began to become very panicky which in turn developed into generalized anxiety. I just couldn't trust myself not to be ill when I was out and became scared of embarrassing myself as "it was all in my head" and there was no cause of these symptoms - anxiety was the only answer. I began to become scared of driving my daughters around as I thought I would faint as that was how I rationalized the "weak" feelings and generally didn't trust myself to take them out for the day alone in case I became unwell and was unable to walk fast enough to catch them if they ran off etc. I would like to point out that I tried medication for anxiety (HUGE mistake, it made me worse - I lasted 4 horrible weeks!) Counselling, Anxiety Workshops, The Linden Method....the list is endless!! I consider myself reasonably intelligent and I completely understand every aspect of anxiety as I have a compulsion to research and do whatever necessary to get better and every "expert" I met commented on how they couldn't understand why my symptoms continued. I am now starting to think it is because I actually WAS feeling unwell and was dismissing my body trying to tell me so!!
I hope I haven't waffled too much there - I'm not good at short stories! I just wondered - if anyone can identify with this and if so (assuming I do get a diagnosis and some medication to help) did the medication and effectively the control of the symptoms help to learn to "trust" your body again and gain your confidence that you are not going to feel ill every time you leave the house for more than an hour!
Thanks again everyone - wishing you all a lovely day  |
I can so identify with this, I feel like I wrote this post myself. I was also thinking I was going to "faint" because I didn't know what was happening, especially in the car with my two kids! I would shake my head to try and stay "awake" and I told myself it was all in my head and I was just freaking out. But the breathlessness was REAL and not anxiety at all. I think you were not feeling well and your body was telling you this, my body was saying "alert alert! something bad is happening!" and i would just roll down the car window and think I just needed more air. My flare ups fade a bit, I found out this year that I was triggering myself year after year with a certain medication, and my confidence comes back with better health, I hope that yours does too. I had to have a helper for a long time with driving (I was so weak) and with my kids until I felt ok being alone again with them. I hope that you too will gain your confidence back, especially when you get a diagnosis, because then you can make a plan and feel more in charge of your life. Good luck to you!