Wednesday, 25 January 2012


Isn't it great when you wake up from what should have been a lovely refreshing nine hours of deep sleep only to feel absolutely shattered, minus any energy and engulfed with a general feeling of fed up-ness?
My old friend MS has decided that after the miracle of the baby sleeping straight through for the last six nights that I have got too used to feeling raring to go on waking and that it is definitely time for it to remind me that it is boss and the best way to do that would be to give me a delicious dose of fatigue. Brilliant.
Now I know many with MS already know exactly how I feel but for those lucky enough not to realise what fatigue is, let me explain.

  • I don't feel tired - I feel absolutely and utterly exhausted.
  • I don't feel a bit weary - I feel like I've been trekking a mountain for the last three days. Without a break.
  • I don't feel like I need to put my feet up - I feel like my legs will collapse under me if I stand.
  • I don't feel like I can't be bothered today - I feel like if I did, I would die.
  • I don't feel like I've had a late night with a bottle of wine - I feel like I was beaten around the head with the bottle and then kicked in the face and forced to stay awake for three nights straight.
  • I don't feel like going up the steps is a drag - I feel like the steps are so steep I will need a pulley to help me.

The thing is with this fatigue is that when you tell people without MS you feel tired, people without MS relate it to when they feel tired... but is it SO different.
In fact it is so different that I am getting too tired to explain any more.

Thursday, 19 January 2012

Week seven and eight after the Big A

Eight weeks after the Big A treatment, my immunity should now be back to full strength and my old friend MS should be kept at bay.
These last two weeks I seem to have turned a corner. I finally managed to shake off the bug which had been plaguing me for I don't know how long and I started feeling 'normal' again.
The bug had seen a bit of return of the MS symptoms I've had in the past such as feeling very dizzy when I lay down or stood up and my grip had become very weak which left me feeling quite flat about things.
But apart from that, I've been feeling ok generally and the symptoms haven't been that unbearable.
I've had my second monthly blood test and now I'm just waiting to see what happens next.
My guess is that I'll hear from the MS nurse or the neurology people at some point soon to see how I'm getting on... or I may not hear from them until I'm due for my second dose of the Big A in ten months time.
So overall, this whole treatment hasn't been as awful as I was expecting it to be.
I have learned a few lessons though which I will be putting into place for the next dose and among those are:

  • Avoid people with colds or any other bugs at all costs
  • Do not assume my weakened immunity be back to full strength before eight weeks
  • Remember it will take AGES to get over a bug until that eight weeks is up
  • That refusing to see people because they are ill is not rude, it is sensible
  • That if I find myself in a situation where I am in close contact with a buggy person, to leave...
  • ...And not feel bad about it
  • Do not listen to non-medical-people who try and convince me that after three weeks my immunity will be ok. It won't be.
  • To make sure I'm not rushed to feel better immediately after treatment
  • To rest and recuperate for as long as I need to
  • To be as selfish as I need to be to let my body get over the treatment.

I'll let you know how I'm getting on.

Tuesday, 3 January 2012

Week five and six after Big A

Apologies for the slackness in my blogging. I shouldn't moan, but I will. The reason for the silence has been:

1. Christmas and New Year festivities
2. The evil bug from hell still hanging around
3. A very snotty baby

I have been feeling pretty rough over the last fortnight, fighting this cold has really taken it out of me and I simply cannot seem to shake it. I fear I will always have this runny nose, cough and general lethargy. I also fear that people will start calling me by a new name... Phlegm Sian. (I'm sorry, too much detail. I have disgusted myself.)
It is hard to tell you how I am feeling post-the big A because I am so wrapped up in the misery of this cold.
But on a couple of positives.
I cooked a three course Turkey roast for eight people on Christmas Day. And on Boxing Day, I managed to cater for another seven. And I didn't collapse from exhaustion until a couple of days later. So the earlier fatigue that came with the Big A seems to have abated.
In fact, apart from the lingering bug which maybe is taking longer to shift due to my compromised immunity, I feel pretty much ok. I've had no reactions / no relapses / no negative effects.
Hopefully the next two weeks will see my immunity return properly and I can kick this bug in the head!