Wednesday, December 21, 2011

One Year of Copaxone

Wow, can you believe it?  I hardly can.  I have now injected myself with Mr C 370 times... For those of you scratching your head as to what this milestone is, I have been injecting Copaxone for Multiple Sclerosis for a whole year.

I can remember being utterly devastated at the news given to me by my neurologist just over a year ago now.  I had come to accept I had MS, but mostly, from day to day, I could ignore it and get on with my life without anyone really needing to know about it.  I only had sensory symptoms - weird tingling, buzzing and sometimes a first thing in the morning Lhermitte's sign.  Most of these symptoms I put down to other things.  Once I was chatting to my husband about the tingling you get after exercise and he looked at me funny and said, well that must be an MS thing.  So, as you can imagine being told by my neuro that I had some activity going on in my brain (I'm pretty sure he didn't mean thinking!) and that I needed to start medication to calm the inflammation down, spelt out the worst impending doom in my book.

I was point blank, scared out of my wits.  I think while I managed to keep a lovely calm exterior, internally I was preparing for the worst.  I read up about Mr C on the net and found a multitude of nasty symptoms to email my neuro about... he replied calmly and sensibly (of course)... but how could all those opinions be wrong?  Yet I knew I had a responsibility to my young family to stay as healthy as possible for as long as possible, thus I knew I would start Mr C and persevere with it.

I remember C day clearly, as if it was yesterday in fact.  My family were all at home and we ever so patiently waited for the MS nurse from MSWA to arrive.  She came in a little white car, was really tall and introduced herself as Ann.  She spent a very long time talking through our concerns in a laconic, yet laid back style.  She knew what she was talking about and this put my mind at ease.  But then it came time for her to give me my first injection.  It seemed to me like she dawdled, dragging it out, when all I wanted her to do was press the auto inject and fire Mr C through my skin and into my fat cells.  I guess time slows when you are experiencing extreme anxiety.  When she finally did press the button, what I felt was nothing like a bee sting, which would have required that I jump up and down and swear quite a lot.  About a minute later a slow burn commenced and a red spot developed.  The red spot grew and finally developed into a welt.

In the beginning, my injections didn’t tickle, but were nothing like a bee sting.  I rotated my injection sites as suggested and would do my stomach, hips and thighs.  I was advised not to do the backs of my arms, firstly because how can you inject the back of your upper arms and secondly because I like to wear sleeveless tops.  The injection sites usually turned into big welts, which lasted a few days.  Sometimes, a few days after the welts disappeared the site would begin to itch.  But you know what, I don't get the welts now, the injections don't sting at all - in fact sometimes the only way I know I have given myself the injection is to check the syringe is empty and unless I am doing a completely new injection site, I don't itch either.  I have given up doing my thighs, because I don't want to risk the dreaded lipoatrophy or pots holes on my thighs because I like to wear bathers/swimmers/a swim suit/cossie/togs in summer and it winter too, for the kids swimming lessons.  I try my hardest to rotate injection sites on my stomach and hips, but I'm a bit too lazy to do the whole diagram thing and mark the exact location of the injection to make sure I don't hit that spot again in four days’ time.  I also know that when I keep a list about certain things I will become obsessive about them... and I don't need that crazy business going on right now.

So since being on Mr C I have had one full MRI of my spinal cord and brain.  My neuro was unconcerned by a small lesion which was not active and did not request that I come in and see him.  I took that to mean Mr C was doing his job and would remain in his fulltime permanent position as a decoy for my immune system.  I have another MRI booked for June/July.  I'm not concerned as currently I have no new symptoms.

So what have I learned in this year of daily injections?  I have learned that there are a lot of websites and social media pages out there that obviously want to help people with MS, but do no more than breed fear through inaccurate information and personal opinion.  I have learnt that many people with MS do not know much about their disease and therefore are frightened by going to these websites and pages.  I have learnt that many people on such websites and social media pages will only talk about their WORST experiences with MS and MS medication.  I have learnt that the average Jo or Joe does not necessarily know the things that I have learnt this last year - that personal experience and opinion does not equal fact about MS.

If you are reading this and you have MS, I beg you to go to highly regarded and well known MS websites where facts about Multiple Sclerosis are recorded and read up on them. Your homework is to get to know your disease.  If you are feeling mentally strong enough, then brave the websites and social media pages where fellow MS-ers write about their personal experiences and voice their opinions.  But if you are feeling fragile then I would suggest that these opinions and personal experiences are not a good place to be.  After all, your personal experience will be different to everyone else - because you are different.  You are not going to know how something will affect you until you have experienced it yourself!

Shall I get off my soapbox now?

I just think about all the worry and concern I spent pondering what might happen when I started Mr C, such as gaining weight and know now that I could have saved myself a whole lot of mental anguish.  I bet many of those people who put on weight while taking Mr C, just started eating more or exercising less but attributed this weight gain to Mr C... you just don't know other peoples circumstances.  However I know myself pretty well and I will continue visiting these web pages that cause me mental anguish, but not because of the problems that Mr C could cause me gleaned from other peoples experiences.  But rather due to ill-informed people with MS teaching and informing ill-informed people with MS. 

Anyways my lovelies, yay me for injecting myself for 12 months! 

Merry Christmas, have a safe and prosperous new year and thanks for reading.