Yawn

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.

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.

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!

Week four after the Big A

Such is the saddo that I am, I am constantly surfing the web looking for new information about MS and possible treatments and I just happened to be reading something on the Big A when it reminded me that I need to have monthly blood tests to check my blood count.
Then I realised I was now in the fourth week after having the treatment so I hot-footed it to the day unit at the hospital and got my blood done. Why I need to get my blood checked monthly has been explained to me but I can't remember why it needs to be done although I suspect it has something to do with the possible side-effects the drug can bring on.
So week four has been, again, very uneventful.
We are all still fighting off the cold that my very thoughtful family member decided to share with us the weekend before last but it hasn't been too bad. My baby son is worst and on antibiotics but I seem to have got away with it - touch wood!
And hopefully this uneventfulness will continue.
Merry Christmas x

Week three after the Big A (and I'm moaning)

If things had been going to plan and I had stayed away from people with the lurg, this week would have been fine. I am sure my energy levels would have continued to rise and I would have been feeling back to my old self.

But things haven't quite gone to plan. 

A weekend visit to family resulted in me catching a disgusting cold thanks to the thoughtfulness of a certain family member who failed to tell me he was ill before we arrived (knowing my immunity was compromised and giving me the option of staying away) and so I had to socialise with him and his filthy germs. 

Despite his insistence that my immune system would be back to its full strength now, after all it has been all of three weeks since it was obliterated, and the doctors were just being over-zealous in their warnings to stay away from the ill, I caught the bug.

It was not a surprise to be honest - the way he was sneezing, I'm surprised he didn't infect the entire village.

All week I have been feeling rotten. The fatigue has been at an all time high and I generally feel really run down and under the weather. 

To prove I am feeling run down, a HUGE spot has erupted on my chin. It seriously is like a parasite and has a pulse and everything...! I fear it is going to be here for the duration of the Christmas festivities.

I digress.

So I can't really tell you what the Big A treatment has left me feeling this week because I have this cold and it has taken over everything else.

I have finished the anti-viral pills issued to me after the Big A though so that is one piece of Big A news but apart from that, I really am just doing my best to get over this cold. *cough cough, sneeze, sniff*

Let's get moving

I've just completed my first bit of exercise since I had the Big A - and I've gotta say, I feel brilliant!
It was 45 minutes of (light) weight bearing aerobics done in the comfort of my living room in front of the telly with a very nice American lady (Erin O'Brien's Strong Body Ageless Body if anyone is interested) telling me what to do. My heart was beating fast, I was pink cheeked and had a sheen of sweat and it has really cheered me up.
Since being told I had MS, I've been nervous of doing exercise because if you read everything I've read on MS, you start believing that getting hot will bring on symptoms. I used to enjoy running - ok jogging. Oh ok if you want to be pedantic about it, fast walking, but I've been worried about going out on my own for a run in case I get a spasm or my feet go numb or my balance goes weird and I am stuck on the streets of north Cardiff  miles (alright, I'll admit it - just a mile) away from home with no way of contacting my husband to come and rescue me.
So I thought I would see how I coped with a fitness DVD and you know what - it has cheered me up no end. For one thing, I could do most of the moves despite months of idleness and also that my old friend MS was happy enough not to join in!
So bring on tomorrow when my muscles decide to punish me for getting them to work - I can't wait for the ache. It's been too long.

Week two after the Big A

The last week has been a tale of two halves.
Week two after the Big A started off okay. I actually felt pretty normal and then mid-week came and it was downhill from there.
To say I had a lack of energy would be a complete understatement.
There were a few moments when I actually didn't think I had the strength to get through the day and the longing to phone my husband to come home from work and take over babysitting duties so I could just curl up on the sofa was almost overwhelming.
Being the brave little soldier I am, I resisted ringing him and forced myself to get through the day feeling light-headed, weak and altogether pathetic.
Headaches have been a source of irritation. Usually coming on during the night and waking me from my slumber, they have been pretty intense but I was able to get them to subside about half an hour after taking a couple of paracetamol.
The weird thing about the intense fatigue I've been getting is there doesn't seem to be any trigger. I either wake up feeling great or I wake up feeling like death. There doesn't appear to be any reason for the fatigue or any reason for why it disappears.
In terms of avoiding bugs, well so far so good. I have been shunning places where I know there will be lots of people. Christmas shopping has been done online as has the weekly 'big shop'.
I've also avoiding hugging and kissing visitors to the house and haven't been apologetic about it either!
And my hands are starting to get quite sore because I am constantly washing them.
I'm still taking the anti-viral tablets but as I enter week three post-Big A, I'm feeling positive that my immune system is rebuilding itself and that I may well have gone through the worst now.