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Weekly Update #6

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It’s been a while since I last gave an update on medication. I’ve struggled to write anything, maybe writers block, I dunno.

Anyway, I’m still on 150mg extended release. I decided to take an extra few weeks to let me body adjust because I was feeling a little out of control. This was the right choice because I’m feeling more settled again. I’m ready to try and reduce again in a few weeks time.

I back to normal eating habits, although I’m finding it somewhat easier to eat better foods for me like more veggies and fruits. I’m also trying to aim for my 5 a day and 2 litres of water. I think what is important is to keep reminding myself that its okay if I don’t hit those targets as long as I can honestly say I tried. (Like, really honestly say). And I am still reducing portion size.

Over the past couple of weeks I have really been hurting and haven’t bee able to do any Pilates. I’m having to save energy and pain tolerance for things like showering and cooking dinner, both of which have been a struggle over the last 2 weeks. However, I am not putting this down to medication changes. I think it’s a combination of fibro flares and weather.

I’ve noticed a change in my sleep patterns and mind fogginess. The mind fog is clearing and rapidly. I don’t usually feel much of that any more, just on days where my fibro is bad. But, I am struggling to sleep at night. I’m waking up a lot and it doesn’t really feel like I ever get a deep enough sleep. Could this be because I’m also struggling to fall asleep?

I can’t thank mediation and YouTube enough. Those are the only thinks that are helping me sleep even though I am also trying to stick to a regular schedule. I’d recommend anything by Michael Sealey.

I think I’ve rambled on enough now.

Kim x




Dream #1

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Last night I had a really weird dream. One of those that wake you up and keep you awake. It only lets you lightly doze for the rest of the night and wakes you up every 30 minutes.

It wasn’t anything particular traumatic but something I felt was giving me a meaning. I feel these dreams are just another side effect from my meds. Thinking back, nothing they was in my dream was anything to do with what I was watching on TV it talking about with anyone.

What I remember was seeing a friend who was pregnant. She was about ready to pop and went to the hospital to find out the baby was going to be still born. I remember having a Lego set to build, and going to a shop/cafe like place. They had a secret room that they would let me in. It was very white and clean.

This room somehow became white walls of a cave/room. Hubby and my friend was there and the wind was really blowing outside. There was a storm and, even though we were inside, we all got struck be lightening. I was first and I starting having a fit from it. I tried to tell the others but I couldn’t speak.

I feel like there are certain parts of my dream that stood out to me and were giving me a hidden meaning.

When dreaming about stillborns, it’s often linked to the end of something. Maybe trust in someone. It can also be linked to disruptions, failures or the loss of the feeling of achievement, like when you are trying to finish a project but loose it close to the end.

The second thing that stood out was the lightening strike. Often it’s paired with intuition and inspiration, but can be linked to raw energy with both the power to generate and be destructive.

The last thing was the fit/seizure. That only happens after I’d been struck by lightening. I could talk it warm people. This is usually representing a loss of control. The thing is, I could have sworn t was real. I would have put money on that I’d had some kind of seizure in real life. It scared me.

Maybe something will happen that I have no control over, something I lose and the dream was a warning. Maybe my brain was working overtime from the week. It just feels odd because last night was the first time I’d meditated in a week.

Or maybe it’s all in my head?

Kim x

Weekly Update #5

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Well I haven’t been able to weigh myself this week but I’m sure that I haven’t lost anything (which I am totally blaming on Christmas)…

I’m still on the 150mg extended release and this is the first week I’ve actually thought “Maybe I shouldn’t do this.” I’ve been able to feel my mood rollercoaster and it’s been reported that I’ve been grumpy (Sorry to my dear hubby xxx).

I’m going to see this through until the new year and I plan to stay on the 150mg threshold for an extra month to give myself more time to settle. It might seem like this is a step back but I’m seeing this as a step forward. I’m recognising that I need more time and I need to get this worked out correctly.

The appetite is coming back with vengeance but I also haven’t been doing my meditation either. I’m trying to channel it into eating more fruits and veggies. Even thought I think I’m hungrier, it’s easier to make better choices.

I’m also finding sleep harder. Staying asleep, getting to sleep. I’m trying to stick to a bed time routine which sees me going to bed at about 9pm, but I could still sleep for 12 hours.

Before I could have slept for 14-16 hours. I don’t feel any tireder for sleeping for less, which is good.

I was thinking that I was failing a little, and I was worried that I was going to have to go back. But after writing this I feel that I’m not as our of control as I thought. Maybe this is just me? Maybe I’m but a happy, bubbly person.

Everyone has mood swings, and moments of tears and frustrations. Maybe I’m not as ill as I thought, or maybe I’m learning to deal with myself as a person.

Kim x

Weekly Update #4

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Man, I’m starting to loose track of these!

Totally weight loss: 2kgs

Weekly weight loss: 0kgs

Medication: new dosage of 150mg extended release.

Starting today I’m only on the 150mg extended release. The thing I am worrying about the most is sleep. I need my sleep. I love it. Even when I was a baby I slept well and a lot. I get slumpy (sleepy-grumpy) easily and I’m not a nice person to be around. Lately I’ve been using a lot of meditation to help with that.

So the food thing is still an issue. I really can’t eat as much as I used too, and I shoes in things like chocolates. Where as before I could eat a whole sharing bag of Galaxy Counters, these days I struggle with even a quarter. I want more fruit and veggies. It’s like my body is choosing them. I’m also not fussed whether I eat or not. For the most part I’m eating because I should or because I like the taste, not hunger.

I’m also starting to wear some stuff I couldn’t fit into before so maybe my scales are wrong because they don’t show a great loss. I can feel certain parts of my body have changed and I feel I am curvier in the right places. Hubby has noticed a difference too.

I’m still having mood swings but trying really hard to manage them, although I feel they are becoming more noticeable to outsiders. I don’t know if I’m struggling to manage my autism more or not. Those parts of me are struggling to be kept under control.

I need to be in a routine and I need to have things done in a certain way. It’s getting to me more and more when this doesn’t happen. Yes, I know I sound like a spoilt brat but I promise you it’s not just about getting my own way.

Generally still having less foggy brain days (except for the fibro ones), but I am having more aches and pains lately. At the moment I’m choosing to put them down to either fibro, tiredness, or both.

The next 4 weeks will be a challenge especially with Christmas, and I’m toying with the idea of trying to keep a mood by hour diary. This is when you take a 12 hour period, like 8am to 8pm and every hour you right down a number from 1 to 10. 1 being the worst possible mood you can imagine and 10 being the best, manic mood.

But I’m pretty lazy and it is the holidays so we’ll see…

Kim x

Weekly Update #3

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Day 22

No adjustments in medication this week. We are keeping to 150mg extended release and 25mg immediate.

I’ve discovered a new side effect! Memory loss. I forget things very quickly, usually within minutes of being told them or thinking of them, and now need reminders for everything. Like yesterday and today I tried to constantly remind myself to put medication in my work bag. I set reminders on my phone. I still managed to forget and only remembered that I didn’t have them until it was time to take them.

I still have a loss of appetite and have lost some weight but I think more inches. Some clothes and parts of my body are feeling different, but my weight has only decreased by 2kgs.

I still think I’ve been doing well with mood changes. I’m still noticing some but nothing I can’t cope with, or cant pull myself out of. Until today.

I have a mini-breakdown (for lack of a better word). I called the doctors at the beginning of the week to get my next months tablets and was told they know nothing of the change. After a lot of ringing around I finally managed to speak to the medical secretary who ensured that the letter confirming the change was to be fax over urgently yesterday.

I called them today and was told I would get a call back from the doctor. I did (shock) and was told that he would try to get my medications issued early next week. The thing is, he advise that they probably had the letter and that it just hadn’t been processed at the surgery.

He also couldn’t tell me how long it will take for them to completely process it… So… what do I do? Do I just go without? My consultant explicitly told me not too because of how long I’d been on them.┬áDo I skip doses to make them last longer? Do I go down there to beg and plead? Am I going to have to do this every month when I need a change?

So this triggered an awful spiral down; I’ll just hurt myself and go to A&E. I’ll force them to help me. It’s my fault for being so broken and it would be so much easier if no one had to deal with this. I mean, the doctors surely think so.

I know these thought are bad, and I’m probably overwhelmed by Christmas but I just couldn’t help me. So I cried and Adam talked to me. I probably worried him which I feel awful for but I just can’t fight like this every month. And no one can fight for me.

I’m hoping this get resolved and I get to continue on my journey to get off my medication. I’m putting this all down to just being overwhelmed.

I blame Christmas.

Kim x




Weekly Update #2

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Day 15

No adjustments in meds this week. We are keeping to 150mg extended release and 25mg immediate.


The lack of appetite is still there, although maybe not at strong. There are some days where I am struggling to eat at all, but I’m taking this opportunity to eat smaller portions and better food in the hope that the two combined mean some more weight loss.

I’m also feeling clearer still which is great. I’ve also noticed less headaches. I’m starting to wonder if this is maybe the reason why I was having so many. They were always put down to stress and anxiety because I’ve had them since childhood. But *touch wood* they keep at bay.

Thankfully the aches and pains and cleared up and I’m back to the usual amount given that I have other health issues. I’m also a more normal temperature but that could just be the cold weather.

My moods have been a little wobbly but nothing I can’t handle, and my rubbish mood today is being put down to Amazon not delivering a parcel they said they would.

I’ve still been sleeping fairly well. I’m keeping a fairly strict bedtime routine which may seem childish to some people but when you can go days without sleeping it helps to make your body think it’s due to be tired at the same time every day. I’m keeping up with meditation too, which is also helping me sleep.

So far I’m feeling this is going well. I feel more human. More like me. It’s really giving me hope for the future. I’m hoping these are genuine side effects… or is it all in my head?

Kim x

Weekly Update #1

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Weekly Update #1

I originally saw the doctor on the 22nd November who agreed that I was stable enough and had developed sufficient coping strategies to look at starting to reduce my medication. After being on it for 5 years I’m going to have to taper this off slowly because, even though quetiapine isn’t chemically addictive in the same way as benzos, my body and brain will have adjusted to work with the chemicals I’ve been putting into it.

Changing this rapidly could give me some horrible and serious withdrawals which I’d like to avoid as much as possible. I’m not going to be able to avoid everything but at least I can try to minimise it.

Even though I’m not on a massive dose (200mg extended release at night) I’ll still need to taper. So we agreed going down to 150mg extended release and 25mg standard release. This is only a 25mg reduction overall and the doctor said that I probably wouldn’t feel anything for at least 4 weeks, but I’m not so sure. Extended release and immediate will be explained in another blog.

Because of this difference in type of medication it feels like I’ve taken a bigger dose decrease and I’m wondering if that’s why I’m feeling different.

Over the past week the biggest change I’ve noticed has to be my eating habits. A doctor once explained to me how the meds I’m on change how my body processes fat and glucose. I’ve gone from easily eating 3 meals a day and never feeling full to forcing myself to eat at all (which, lets face it, probably won’t do me much harm short term).

The next biggest change in my mood and brain function. I feel…clearer and less foggy. More in control but saying that, I’ve felt my mood change more frequently. Not as violently as they were, but it’s still there. I’m still fairly sure my husband will say I’m still as clumsy and ditzy as before.

The last change I’ve noticed is flu like symptoms. Being achy and cold and I’m never normally cold. Friends and family joke that I could on the north pole and still be warm. I’m hurting more, but something feels different.

So, do I have a cold? Is it just a fibro flare? Did I overstretch at Pilates?

Or is it all in my head?

Kim x