...Over Analyzing...
I decided to push my Motherly guilt aside and put the girls into Nursery/Holiday Club for the full day today instead of just the morning while I work, in the hope that the rest will reduce my symptoms down to a more manageable level - and that they would have a lovely entertaining day. I was lucky to also get a few hours to myself on Sunday too and so two uninterrupted sessions of back-to-back episodes of "Sex and the City" have successfully distracted and cheered me up a little and I have to say - I do feel better for the rest (and distraction!)
Feeling a little more rested (and braver for it!) I phoned my Neurologist's secretary this afternoon to ask if there was any news on my appointment - there was not, I still had no appointment allocated and was told the follow up appointments were now waiting until December!! She asked for my number and said she would speak to appointments to see what sort of wait I could expect. Within the hour she called me back to say she had managed to get me in on the 16th September which I am so grateful for....I have to say that I am not so grateful for the 8am time slot (!) but she said it was better to be early as its my first appointment so they can decided what tests to do and have all morning to do as many as they need. At my initial appointment my Neuro said he wanted to do the RNS and possibly the MuSK test...it got me wondering if anyone on here has had the RNS test as I have mainly read about EMG and SFEMG's?? Is the preparation any different?? Maybe I should post on the discussion board?
My over-analyzing has gone into over-drive!! What if I'm having a typically good day for my appointment? But then again will I ever be as bad as I would like to be for the tests?! What if the early morning masks my symptoms enough to pass the tests? Can I really doubt these tests if I don't get the only diagnosis I feel explains my symptoms? From what I've read here, YES! But in reality, I really don't think I can pursue a third opinion...or that my GP will support and refer accordingly!
My biggest fear is having no diagnosis or even worse - being told it is in my head....again. Do I think I am depressed? Definitely Not. Anxious? A little. Crazy?? If I am then I am blissfully unaware of it and hope to stay that way!! If that label is given to me then I will ask for a referral to a Psychiatrist this time for evaluation in the hope that they will have the answers of how to make this stop so I can go back to living my life - not just watching it pass me by!!
I know that I cannot spend the next 5 weeks playing these thoughts over and over in my head, what will be, will be and me worrying (or over-analyzing!) won't change that. I need information to be prepared but I have to learn to stop trying to control and analyze everything....which is hard as this is how I deal with everything and my anxiousness comes from the way this illness defies control or predictability!!
So, my solution? For now...back to back episodes of Sex and the City! I'll have to figure the rest as I go!
Feeling a little more rested (and braver for it!) I phoned my Neurologist's secretary this afternoon to ask if there was any news on my appointment - there was not, I still had no appointment allocated and was told the follow up appointments were now waiting until December!! She asked for my number and said she would speak to appointments to see what sort of wait I could expect. Within the hour she called me back to say she had managed to get me in on the 16th September which I am so grateful for....I have to say that I am not so grateful for the 8am time slot (!) but she said it was better to be early as its my first appointment so they can decided what tests to do and have all morning to do as many as they need. At my initial appointment my Neuro said he wanted to do the RNS and possibly the MuSK test...it got me wondering if anyone on here has had the RNS test as I have mainly read about EMG and SFEMG's?? Is the preparation any different?? Maybe I should post on the discussion board?
My over-analyzing has gone into over-drive!! What if I'm having a typically good day for my appointment? But then again will I ever be as bad as I would like to be for the tests?! What if the early morning masks my symptoms enough to pass the tests? Can I really doubt these tests if I don't get the only diagnosis I feel explains my symptoms? From what I've read here, YES! But in reality, I really don't think I can pursue a third opinion...or that my GP will support and refer accordingly!
My biggest fear is having no diagnosis or even worse - being told it is in my head....again. Do I think I am depressed? Definitely Not. Anxious? A little. Crazy?? If I am then I am blissfully unaware of it and hope to stay that way!! If that label is given to me then I will ask for a referral to a Psychiatrist this time for evaluation in the hope that they will have the answers of how to make this stop so I can go back to living my life - not just watching it pass me by!!
I know that I cannot spend the next 5 weeks playing these thoughts over and over in my head, what will be, will be and me worrying (or over-analyzing!) won't change that. I need information to be prepared but I have to learn to stop trying to control and analyze everything....which is hard as this is how I deal with everything and my anxiousness comes from the way this illness defies control or predictability!!
So, my solution? For now...back to back episodes of Sex and the City! I'll have to figure the rest as I go!
Replies
When I first was having symptoms, I put off going to the doctor for weeks because I was afraid they wouldn\'t believe me! I didn\'t at all understand what was happening to me, but I remember making sure to chew gum as I waited in the waiting room, because I\'d noticed that chewing made my jaw weaker. This disease, and it\'s unpredictability, really does force us to give up control, and that\'s frustrating. I\'m glad you got an appointment sooner than December, and I hope you get some answers!
So glad to hear you have a September appointment. Rest is so important so keep up watching those Sex in the Ciry episodes! Gez
Get up VERY early that day, avoid caffeine, eat a terribly decadent breakfast to tire your jaw and cause symptoms via dietary badness, and get drunk the night before. Well, maybe not drunk, but have a cocktail. Rosie and I are always marveling at how absurd it is to have to produce symptoms in conformity to schedules.
It is not in your head. Stand confident in your observations of your body. :-)
My appt is also the 16th.
Good luck!
Waiting is so hard. You are doing the right thing in trying to keep your mind off of your tests.. Do what is best for you. Your children will probably enjoy some extra play time. I will be thinking of you. Barbel
Thank you all for your supportive comments!
I will remember the chewing gum Vieve! That is a great tip as they are going to do the test on my face! Thank you for your message - I know exactly how you feel about being scared the Doctors won\'t believe you!
Gez, I have to say the Sex and the City episodes are the best medicine I have on offer right now so will definitely keep at it!!
Elinora - you are so right, its more like being on trial than going to someone who is meant to be there to help! Thank you for believing me, after Neuro #1 I feel like I have to prove myself to everyone and its nice to hear that people don\'t agree with him that it\'s in my head. I will try to stand confident - thank you! I am just going to read your journal entry properly as I haven\'t had the chance yet properly but I did see briefly that our appointments are the same day - I will think of you while I am there, I think in a strange way it will be a comfort...like I am not alone, despite the time difference - if that makes any sense!!! Good Luck to you too!!
Barbel - thank you as always for your lovely message and kinds thoughts, I really appreciate it.
Eve.x