Monday 25 November 2013

Seizures in Sleep?

For the last 4 years I have not slept next to somebody. What one doesn't realise is that not sleeping next to another person means you have pretty much no idea what you do while you sleep. Recently I was dragged away to visit my sister as my mum wanted the company. There was only a double room, so we ended up sharing a bed together. Oh my...

... apparently something very odd occurs during my sleep... I seem to have some kind of seizure. It happened two nights while I was asleep. I am completely unaware of the whole thing. I don't snore (which I knew as I have been recording myself during my sleep using a sleep app). Th funny thing is, the sleep app was recording me in the night for apparent snoring, but whenever I listened to the sound recordings, all I could hear was masses of rustling noises as if someone was moving around loads, which I never really could make sense of. Now I am thinking - is that me jerking around during these episodes I seem to be having? It would make sense of the sound recordings if it were. It would also make sense if I am doing this because I have been really struggling morning-wise for some years and the doctors agreed it's not normal; however, they never followed through on the sleep study which one doctor advised another doctor I should have. They thought I might have sleep apnea or something of that nature. I wake up feeling appalling - as if I have gone 10 rounds in the boxing ring, with migraines/headaches, lightheadedness and nausea etc. Now I am wondering, if I can tackle this issue, maybe I would feel a bit better during the day and also be able to function more normally in the morning (i.e. get up without this mammoth struggle and actually be present in the moment rather than off on another planet in a distant galaxy far over there - which is where my morning brain likes to reside).

Took this picture while away of: the beautiful Hampshire Downs
I started doing some research (as usual) and it seems that nocturnal seizures are known to occur in some people with M.E. Hmmm... who knew? Anyway, aside from taking a pharmaceutical (which I would have to find a doctor willing to prescribe), I can try taking L-Theanine. I was taking it before for a while, but when it ran out, I never bought any more. It's meant to be effective in helping prevent these seizure issues, so I shall have to try it again and see how I feel in the daytime.

Poor Millie (my dog)... I think I have probably been driving her insane at night with all this movement (she sleeps in really late these days and also seems tired all day). The irony being that my dog has epilepsy and has woken me in the night to have a seizure... so we're somewhat even.

Monday 18 November 2013

Argh! Good and Bad

Things continue to be quite difficult. I seem to be going through some kind of personal hell, but there is light at the end of the tunnel...

To cut a long story short, I was suffering that much that I thought I would finally just up the LDN to the 4.5mg. The rationale being: seeing as I already felt so awful, the side effects of my dose increase would be lost in the general awfulness (no time like the present eh?). So I did it. I took about a week to get over the LDN herx (which I am surprised I still got this far along the dose increase), and I am now feeling the better effects of it.

The better effects are:

I managed to do a little sewing yesterday and this morning (on the sewing machine - pictured below). I managed to play Words with Friends (I gave up last week and resigned or whatever it is you do... as my brain was just stuck) and win (by a few points). My sleep has improved massively... in fact this is the biggest difference!!! It's exciting. The time I am getting to sleep has been swinging round quite dramatically (as in quickly) from 2-3 a.m. to 1 a.m.-ish. When I get to sleep, I am dreaming! Dreaming big dreams... that I remember some of the next morning. I also feel as if I am sleeping rather than being in this weird state of semi-consciousness that I call sleep and others would call dozing.

The not so good (room for improvement):

I have been spending every day in bed whereas normally I try to be downstairs for a big chunk and go back to bed around 5-ish. This started before LDN and I am hoping it might go away. Recently on the good days I have manged 1 to 2 hours spread out over the day downstairs eating my meals and doing a wee bit of something (can't even think/remember what), and on the bad days I haven't managed that and actually gave in (probably shouldn't put it that way) and just lay there. I think it's hard not to start to feel down and panicky when this happens. Part of my panick and depressive feelings have been hormonal and part have been just pure fed-up-ness. I sat in bed crying - something I never do - because I am so fed up with dealing with my body and the horrid pain and nausea. I have been really nauseous... and just when I think it's gone, it comes back. I have been through periods of chronic nausea before, so it's not a new thing... just it seems to come in episodes of weeks or months and then disappear for a long time. I don't really know what that is. It seems to happen when I feel worse and have a decreased ability level. Not that my body loses any weight... but that's a whole other issue.

Anyway, I have decided, seeing as this is how my body wants to be right now, I am not going to push it. I am reining back in and giving myself this extra bed time and not making any social commitments even though I promised quite a few people I would see them in November. Oops. I feel A LOT better horizontalish (legs up) than I do standing up or sitting up. It's almost like going back to Pacing 101. I do think this also probably has to do with the autonomic issues as my body's urge to faint/blackout seems to be on a high at the moment and of course when I am more horizontal it's not causing me that issue, which feels a relief.


Friday 8 November 2013

I'm not going to lie, I've been quite ill...

I am loathe to write this, but at the same time, I feel I should.

While I have made progress in certain areas of my ill health, I am not going to lie... I am still not doing well overall... I am grateful for any gains and small mercies, but if I am honest, over the past few months I have been on-and-off quite unwell. I am not bedbound all the time, but I am having long periods of being bound to my bed and just getting up to go to the loo. Even after all these years I find it hard to always know why... sometimes it's obvious: I did this activity/thing, and the PEM is what occurs later... but sometimes it seems as if I am doing all the right things.pacing well and still suffering. It's hard to know what to do then... because you don't know why, so you can't formulate a plan of attack. I know it's bad when I start fantasising about mobility scooters and those wheely things that have a seat on them that mainly elderly people use.

I see now it's called a: Rollator. This image comes from:
http://www.completecareshop.co.uk/index.html
Being excited by those things also depresses me as it's further away from my goals in life and I feel as if having to rely on them is going backwards towards the wheelchair. I want to be going forwards towards fitness!! I am also scared about deconditioning.

I know for a fact that winter does not suit me - lower light levels (and lower Vitamin D), the cold and damp, all have an impact. I try to remember to use the SAD light when I can tolerate it and I am taking high dose Vitamin D daily.  I have also added in a sublingual Vitamin B complex. The cold and damp I cannot really change except to try and keep warm and to wear my gloves when going into cold situations to stop my hands flaring up.

I also think I have been under quite a lot of stress and pressure over the past few months - for various reasons. Certainly setting up business #1, which as I mentioned before is taking ages, has been taking up energy and I think that I am not pacing myself well enough there. I am either doing it or doing nothing at all... at the moment I am in limbo because I need to get a workstation and the one I wanted suddenly went up in price by about £80! I feel guilty when I don't do work at my business as I need to develop my own income stream and become more independent. I also feel frustrated because I actually want to do it and get it going... I know I can be useful and good at something, but I am always fighting these limitations and sometimes on top I end up fighting viral/bacterial infections or the allergies... and that just makes everything 10 times harder/worse.

Overall, if I am honest with myself, I have been doing more this year and not really realising or properly allowing for it, so then I pay for it by being 'unable' or going backwards or progessively getting sicker. I think what frustrates me the most is that on the LDN, I have had some periods where I felt different - in a way that I haven't felt before... since being sick - and because of that, I took it as a sign I could do all these things... and overall that feeling has now gone. Being a glass half full person, I do acknowledge that at least the fact I could feel like that is a sign of hope... that my body could one day be somewhat better or even have some kind of miraculous 90% cure or 100% cure (I did read about this happening to someone who had been sick with M.E. for 19 years).

I have one more increase of LDN to do, so I am now thinking that I probably should do that, as if it does make me feel awful, then at least it goes along with my current awfulness and I probably won't notice it as much as I would if I were in a good patch. I am hoping this increase might kick start my system again. My concern being that if it does, if I am at the maximum what happens if this situation occurs again (which I suspect it might). I did read of a lady with M.E. who split her dose of LDN when this happened and it worked. So I am going to look into that more and see if that might be an option for me.

The gluten free diet is also having a major impact - now if I eat gluten, I am getting a clear (and nasty) reaction, which in one way is scary and unpleasant, but in another way makes me feel that at least sticking to this might bring about some gut healing and help me overall. It is quite hard to be GF when I do get to go out - and I was unwittingly glutened which made me really ill... so now I am figuring out how to be even more careful. It's far easier to cope with the food element at home (so there is some benefit to being stuck at home most of the time).