Tag Archives: Moods and thoughts

Name change

13 Apr

Not sure if I like it but for now it is all I could think of.

I took my usual Monday afternoon Avonex injection and I feel like crap right now.  Some weeks are better than others but today isn’t a good one.  I have a love hate relationship with my drug of choice, I am so lucky to have any drug that is fighting it however little % effectiveness but I hate the way it makes me feel and the pre-injection anxiety.

Something that I need to get off my chest is the current theme among MS patients is this, if your MS doesn’t have progressive in the title, then you aren’t progressive.  I am very aware that MS can be more progressive in some people but I do take umbrage at the suggestion that relapse remitting is some sort of golden ticket in the MS world – it isn’t.  We all progress, if were weren’t, then why take disease modifying treatments?  Are they not taken to help slow progression?  Did someone miss that bit of information?  Why are the MS organisations not doing more to correct this?  This is playing right into DWPs hands (following on from yesterday).  During my assessment, she said oh you have RR like that means fine.  We have treatments therefore we are fine, right?  No, wrong.

I really don’t know from a general society point of view that the types of MS are helping us at all.  In a lot of ways I wished the types were behind closed doors for the medical professionals.

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Moody (but better today)

15 Jan

After yesterday’s dark mood, I feel slightly more upbeat today.

I read through my clinical exam findings, my husband did and we both agreed that something is up.  My husband is convinced it is what got me in the MRI scanner.  It is very scary knowing that that my body is not functioning properly from the midline.  I have visions of my legs just ‘going’ and not being able to take my son to school.  I’m frightened and there is no one to really talk to.  My Sister knows I am being investigated but has convinced herself that I am fine as I haven’t heard anything.  I didn’t have the heart to tell her that with Neurology there isn’t much point in rushing or whipping in a patient quick as there are no cures for upper motor neurone damage.

I plan to tell my Mum about my problems after her Birthday at the end of this month.  I have kept this from her because she will get so anxious about it I fear for her health!  I need to have something concrete to tell her otherwise she will play it down which will upset me or go the other way and have a breakdown.  I can’t win.

I am already pondering my family’s reaction to all this (should it happen).  Will they bury their heads in the sand, play it down by saying things like, ‘but you look so well’, or, ‘I know  so and so with xyz and they are okay’.  It won’t be easy that’s for sure.

Also found out yesterday some young woman asked my husband out for a drink yesterday. She didn’t do her homework did she?  We only got married last October.