Enter The Sandman

Oh I wish…..but it is far too hot to sleep tonight. Too humid.
Oooh – it’s just started raining. Let’s hope that brings the temperature down a bit. But not too much rain….there has already been flooding in some parts of our county today, and the roof of a shop caved in under the weight of an hour long torrential downpour. That we don’t want!!
But a breeze……that would be soooo good.

After my last lot of blood tests showed my vit D3 levels had fallen again, and after my biomedical scientist friend pointed out to me that I could almost double the blood levels I have now and still be within normal bounds (bearing in mind 2 years ago my blood levels were practically non existant), I decided to double the dose I am currently taking.  So I am now taking 6,000 iu a day. My bloods will be re-done in a few weeks, so I thought……why not.

I’ve been taking the double dose for about 4 days now,  and I had a really nasty couple of days at the end of last week with my FM, that felt like the start of a flare; but that seems to have settled out of the ‘flare zone’, so I am wondering if the increased vit d has helped that.

I suppose only time will tell.
Once I have these migraines under control – and hopefully my referral wont take too long – then it will be time to tackle my sleep, I think.

It does baffle me sometimes that the drs dont seem to take things like sleep problems seriously. But I was reading today about a study – a 40 yr long one – and one of the conclusions that was drawn from it was that women who sleep with a light on are more likely to be obese.
Now I know that there are lots of other factors and that its typical of the media to grab onto one specific little factlet like that. But it does make you wonder …..well, it makes me wonder…….about our world and how different it is to even 20 years ago, and how far removed we are from our natural circadian rhythms, especially with street lights, TVs, computers etc.

I know when I have been on the boat, how sleepy I feel as the sun goes down, and how much more easily I wake up in the morning. No streetlights, no TV, and usually just dim lighting inside the boat.

Whereas at home…..well, the last 4 months I have hardly watched any TV or used my pc mainly because of my migraines – even using my phone will trigger one. But I dont get to sleep easily at night. I sleep in chunks of 2 – 4 hours but that’s day and night. Sometimes its 2 hrs asleep/ 2 hrs awake/ 2 hrs asleep etc.
Sometimes I can go 20 hrs and not sleep. Its mad!!! And it doesnt make life easy at all.
Plus the endocrinologist said that my wonky sleep would in effect fight against the benefits of the vit d.

Sometimes……when I am feeling very anti-modern medicine/modern world I wonder what would happen if I came off all my meds. De-toxed from them, basically and tried a ‘reboot’.

I have no doubt it would be terribly painful. But when you see that the side effects of the pills are the actual symptoms you want to be rid of…….I dunno…..I just wonder sometimes, you know?

Would I ever be brave enough? 

These damn migraines and this depression…..I have as big a task before me, I think, as I did just after my surgery, in regaining…..not mobility this time….but …stamina, maybe; maybe strength. Some kind of ‘normal’ definitely.

And each day, I have to wake up …..more so than I used to….and see where I am at. How my body feels, painwise, shakiness wise, balance wise. Am I just achey or am I hurty? How hurty?

How am I in myself? Is this a good day or a not so good day? Or is it an out and out bad day? Do I want to hide under the covers or just stay in my room? Could I possibly face the outside world today?

And then there’s the migraine checks. They can change in the blink of an eye – literally. But if my face is stiff and unmoving on one side when I wake up, it pulls me down, those are days that I want to hide, even if its an otherwise good day.

But the headache, the flashing lights, the zig zagging lights, the light sensitivity…..I have at least one most days. Probably 5/7 days.

You see from February….when this hemi migraine kind of exploded….and then from March……and into April…….my world, as I knew it blew apart. It only started coming back together at the beginning of May.
There have been hiccups. Of course there have.
But it’s only June now.

Why do people expect things to happen quickly? Or instantly?
Is it the culture of half hour TV shows in portions of 10 minutes?
Because some things take time. It takes a lot longer to rebuild than it does to destroy.

But every day now – I think of my dad, and something he imparted to me.

Every day it’s like starting again. Every day I have to see what happens. Every day I have that bit of……hope combined with “fuck you life!”

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4 Responses to Enter The Sandman

  1. Christina says:

    Have they tried any migraine medicine? I’ve been on some, but I didn’t like them. They made me feel like I was dying. My chest would get really tight, so I thought I was going to stop breathing and die. But I have a friend who takes migraine meds and they don’t affect her like they do me.


    • Moongazer says:

      I’ve just typed 2 replies and they both disappeared *sigh*

      Hiya!! Yes, I take Topiramate 100mg a day. I’ve had classic migraine since i was 14. But this hemiplegic migraine only got diagnosed in Feb after a suspected TIA. Although I had been telling my dr for almost 2 yrs that one side of my face wasnt working properly. I was MRI’d but they didnt find anything and she put it down to FM. But its not.
      The episode in Feb took a good 3 weeks to get over and despite doubling the topiramate, the symptoms have been persistent since then.
      They thought maybe they were caused by hormones as when i was 23 and pregnant with my youngest I had 2 or 3 nasty episodes where i lost the power of speech and total use of one side of my body, but my blood results came back fine! The drs then didnt give it a name just said a weird kind of migraine.


      • Christina says:

        That’s so odd! (I’ve been having problems with WordPress too….) I would ask for a new medication. Cause the one your on clearly isn’t working. I’d be so freaked out thinking I was having a stroke! I’m thinking about you, and I hope they figure this poop out. Cause I can’t even imagine how sucky it is. 😦 ((Gentle hugs!))


        • Moongazer says:

          Thank you xx I’m hoping the neurologist will know what to do too. My GP wont change any of my meds until I have seen them, which is very frustrating coz I dont think my anti depressants are doing anything either. And I wonder if in fact the meds arent actually the problem in the first place *sigh*.
          ((((((hugs)))))) back at ya 🙂


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