Archive | July, 2013

Warning – this is a moan!!

25 Jul

Well, it has finally happened, knew it would.  Karen has left the forum, or having extended leave from her holiday!

Now, I am probably jumping to conclusions or projecting my own bloody gripes with the forum but it is a wretched place to be right now.  Newbies have been getting a bit much, if you try to help they don’t like what you say or question it.  They completely and utterly forget that we are ill with the disease they think they have.  Karen is very very clever and knows way too much and passes that on to whoever, whenever for no money and quite often no thanks.  I think the MS Society needs to think about that.

There are clicks forming as well.  If you post, making valid, helpful suggestions or just speaking from experience, you get ignored.  A year ago, you would get someone saying, I agree or that was good advice etc. but not now.  It is disheartening, so I don’t bother now.  I still look, offer help if I feel i can contribute (very unconfident mind).

I am dedicating this post to Karen, who helped me and guided me through one of the most traumatic, frightening experiences of my life.

Thank you xx



8 Jul

For the last couple weeks my MS has put a strangle hold on me.  My arms feel like they have weights strapped to them making every little thing twice as hard.  So frustrating and frightening at the same time.

I hesitated to contact my Nurse, I didn’t want to bother her and I wasn’t sure if it was a relapse (still learning).  Finally, on Friday night, I emailed her, having spent the day and night hardly able to move.  I was tearful but grateful I had booked the day off work the week before.  I wouldn’t have coped at work on the Saturday, no way.  As I am writing this, I am unsure how this weekend will pan out.

My Physio appointment was today, a review.  She was concerned and said it was the right thing to do to contact the Nurse.  She said it was a possible relapse, MS playing up (like a reminder, how could I forget) or progression.  That would be just my luck going SP.  Possible though. All I do know is, the remitting part of RRMS has yet to make an appearance.  The last couple of years leading up to diagnosis have been rough and it’s only gotten worse.

I’m not ready for this on any level.  There are days when you can convince yourself otherwise but then you get knocked on your arse like I have now and bam, reality bites, hard.