Iced Brain

It is Sunday afternoon and I am sitting on the sofa watching two of my lovely girls do my Zumba workout. They are having a great time, laughing and joking away with each other. I say MY Zumba workout but to be honest I have never even done it.  You see it was around the time that I ordered the entire kit that my symptoms all flared up and the most energetic thing I have done since then is start this blog.

I keep waiting to wake up symptom free, is that ever going to happen? I want to Zumba!

Today I have been on pain pills (the strongest over the counter ones available) trying to relieve some of the pressure in my head.  It feels like someone literally has my head in a vice grip. It is NOT nice.  I have never really been a person who gets a lot of headaches or migraines (in fact I don't think I have ever had a migraine from my experience of friends who suffer with them) and I would rather not start now thanks.

Last night the insomnia kicked in and when I got up to go to the bathroom I noticed a really strange (new) sensation in my head.  It was as though somebody had popped an ice cube into my brain.  Literally the left side (near the top) of my head had a feeling of being freezing cold and almost wet.  It felt weird and more than a little worrying.

When I saw my Neurologist last week he said that he "wasn't worried" about any of my symptoms although he understood that they were "bothersome" to me.

Bothersome?  BOTHERSOME?  Hey Doc, let me stick that pencil in your eyeball and then tell me if THAT is bothersome (sorry but I do get annoyed when how I feel is minimised by someone that should have more understanding)!!

So, once again I am back on the internet to see if the ice cube in my brain is something typical for MS sufferers and sure enough, the cold and wet sensation seems to be quite common.  I think my Google is going to start saying "Oh no, not you again" soon.

I have spoken to so many people who have felt like their Doctor didn't believe them or thought they were exaggerating.  It seems to be such a common theme.  I am almost at the point where I am not comfortable reporting any of these new symptoms or issues as I don't feel like he wants to hear about another "bothersome" issue.  I think that is quite sad really but it just seems to be the way it is.

I truly appreciate all of messages I have received from other MSers sharing their own experiences because it is a reminder that even though it feels like it sometimes, I am not alone in this nightmare journey.

I am determined that I WILL be doing Zumba soon. I just need my friend Caroline to finish the magic fairy dust that she promised me she is working on, which is really nice of her since I would never let her be "Sandy" when we did our version of Grease. I just hope that this new feeling in my head won't be a regular visitor.

So enough about me, how are YOU?

Have You Heard The One About Twitchy Toes?

One of the things that MSers talk about is the fatigue.  Now let's be clear, this isn't just the feeling of being tired.  This is the kind of fatigue that makes you want to crawl up in a ball on the sofa and not move.

Yesterday when I woke up I had decided that I was going to thumb my nose at MS and finally get that Zumba DVD out of the box.  You see before I had this relapse I had ordered the whole Zumba exercise package, complete with the Toning Sticks (that sound really funky when you shake them and take me back to my school days when I was allowed to use the maracas).  I woke up fully intending to get my bum off the sofa and that maybe if I exercised I would feel better and more energised.

Well, that is what my HEAD wanted to do.  My body however had other ideas.

Every time I stood up the room would spin around like I was on a merry-go-round and my legs felt weak and trembly. By Noon I hadn't even mustered up the energy to shower, which was a little embarrassing when a delivery man (who comes here quite regularly) rang the doorbell.  I apologised for my appearance (didn't want him to think I was a lazy cow for still being in my pyjamas at lunch time) although when I explained why he very sweetly told me that I "still looked gorgeous" to him.  He did make me smile but was clearly not mentally balanced!

You see lately my shower is taken in shifts and goes something like this:

Step one:  Take a shower, wrap hair in towel and put on PJ's.
(Come downstairs and sit on sofa for half an hour).

Step two:  Go back upstairs, get dressed and apply makeup.  Comb wet hair through.
(Come downstairs and sit on sofa for half an hour, let hair dry out).

Step three:  Try to make the best of the hair that now looks like crap because I was to knackered to blow dry.

So to get to my point (oh there is one? I hear you say) you would think that after feeling this exhausted all day long that I would fall into bed and into a full night of blissful, deep sleep, right?


WRONG!

You see in some sort of sick cosmic joke there is a thing called MS Insomnia and I suffer from "Middle Insomnia", which means I fall asleep and then every night, like clockwork at around 2.30am I am wide awake and just can't get back to sleep.

How rubbish is that?

After a couple of hours of laying there in the darkness I was bored with facebook and had read the downloaded digital magazine from cover to cover.  I decided to put the put my iPhone down and try to shut my eyes.




It was at this point that my toes start to twitch.  "You have GOT to be kidding me".  I actually said that out loud, hoping my toes would hear and go to sleep.

My other half, Phil, woke up and asked what the matter was and when I told him he said "hey, I have a joke for you".

"Go on then" I replied.

Are you ready for this my friends?

He replied with "what's the difference between twitchy toes and non-twitchy toes?"

I knew this wasn't going well but played along.

The punchline?  MS!

He started to chuckle to himself (he was so proud, bless) and I just said "not funny".  He was trying to cheer me up but personally I think he should leave the funnies to Michael McIntyre (but don't tell him I said that!).

Today I was supposed to be going to the gym for a swim (thought this might be a more realistic goal than Zumba) but it's almost noon and I am still on the sofa.  I am however showered, dressed and made-up (although I have to confess to wet hair).


So enough about me, how are YOU?
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