Dec 4 2015

No more Facebook (for a while)

Mr Stuff

I’ve noticed recently that my moods have largely been governed by my reaction to Facebook. Lots of posts have been making me angry and I feel that my circle of friends is getting smaller based on responses to my posts, which has been making me sad. I’m also almost back the the point where I want to tell everyone to fuck off. So I’m signing out of it, again, for a while since that seemed to help a lot last time.

Then I started to think about it and it’s because I don’t get out much to see real people, which I’m trying hard to change, that this has become the way I communicate with others. I know I write this too but I don’t write this blog to be read, it’s a tool to get things out of my head. And as a means of communication Facebook is less than perfect, which only makes me want to go out and meet the actual people more.

So that’s what I’ll do, rely a lot less on electronic communications and meet up with the real people. Which I know I’ve said before, but I need to reinforce it in my head because at the end of the day I’m in a bad place mentally and it’s very easy to fall back into my hermit ways

Nov 25 2015

Shipwrecked in my past 

Mr Stuff

I’ve been thinking of ways to try and make it easier for people to understand my memory issues, which I know can be tough. The best I’ve come up with, with a little help, is a shipwreck metaphor.

I’ve been shipwrecked in my past, left floating alone in an empty ocean, clinging to anything I can find. The things I cling to can be people, who I see as islands, music or other little stimuli, I see as driftwood, and fleeting feelings and emotions, floating debris that is always out of reach.

This also comes with the fear that any islands I find will be desolate and unforgiving, driftwood could sink just as I get to it and I may never be able to reach the other floating debris. But I need to try and get to any support/shelter/safety I can find which means it will dominate my time for a while as I discover whether it’s a good thing for me or not. (Anyone else feel I’m getting carried away with this metaphor?)

I’ve also stopped saying I’ve lost my memory, I’ve temporarily misplaced it and it may come back. But it may not and I’m comfortable with that now, I think. But for now I’m floating along surrounded by a few islands in the distance, lots of floating driftwood and a field of debris slowly floating away, but there’s hope of a rescue when I see the neurology folk in January.

Then there is always the option that I just leave the past where it is. I’m still me whether I remember go I got here or not. But the problem with that is the emotions and feeling I often get, some move me to my very core, that I just can’t ignore. I need to explore them and see where they came from and see why they sometimes have such an effect on me. So I’m destined to remain floating around until I know more about why I’ve been shipwrecked in the first place.

Nov 22 2015

Come back Mr Sandman

Mr Stuff

One of the worst, and most hidden, parts about being ill is the effect on my sleep patterns. I don’t sleep well most of the time, waking often in the night, and a lot of the time I have to get up early. Really early.

When I wake up there is roughly a 25% chance that I’m able to get back to sleep, a lot of the time once I’m awake that’s me up for the day, and if that happens to be 3.30 am and there’s pain and discomfort there then that’s the way it is. And that happens a lot. Yesterday I was up at 3.30 am after eating get ‘s pizza that was probably too rich for me, and that’s the third time this week I’ve been up before 5 am. That then means I’m in bed by 10 pm and hoping I can have at least a bit of a lie in the next morning, which rarely happens.

The end result of all this is that I rarely get enough sleep, am always tired, it doesn’t help with my moods, it reduces my attention span, and loads more effects that I can’t be arsed to list. I try really hard to work, it’s very important for me and my mental health, but it will sometimes stop me from going in. If I’ve been up too early then I don’t feel I can work safely in the warehouse environment so I have to let the guys down by not coming in, which makes me feel that I’ve let them down and in turn I feel low.

Then there’s the “what to do” feeling of being awake at 3.30 am. I tend to play games but not for the fun of playing them, more for the wasting time effect they can have and the distraction from symptoms. I can’t put the heating on if it’s cold,  it would make the bedroom too hot and affect Mrs Stuff’s sleep, so if it’s cold I have to use a blanket which feels awkward. I also can’t put the TV on too loud so watching films or recorded shows is mainly out until maybe 6 am (my golden hour). I can’t take my mess too early as it will affect my whole day so will often sit in pain until 6 am, the earliest I can take them. 6 is also when it feels like the world is waking up, breakfast TV starts and I can hear the traffic getting busier, and that usually gives me a lift.

I have a feeling that having more solid sleeping patterns would have a big impact on my physical and mental health, but it’s also my physical health that is stopping me from having those solid patterns. Fair to say it’s one of the more hidden parts of my illness that passes me off the most

Nov 18 2015

Right brain we need to talk

Mr Stuff

I had a new tattoo done yesterday and was really excited about it, so the going into town and 2 hours spent in the tattoo studio were all ok for me. Once it was done I had plans to go and see my oldest buddy, which I was also ok with, although I was starting to feel a little anxious. But I can do this.

I wandered into a pharmacy to get some bepanthen and moisturising shower gel, got to look after new ink, and all was still good. Then as I wandered past a big shopping centre I saw Miss X, my ex and first love that I’m confused about. That just spun my head into a frenzy.

I wasn’t expecting to see her and I become shy, confused, a little lost and just needed to get home. To put this into some perspective our relationship was over 20 years ago and I don’t know why I’m reacting like this. So I booked it straight home.

I let Johnny know I wasn’t coming round and why, which triggered a long phone call. During which I made it clear that I love Mrs Stuff to bits, I don’t want to think about how I could have dealt with illness without her, and I’m not going to try to get back with my ex. So that’s all good.

But it felt to me as though we’d recently split and I was in “avoiding” mode. Fair to say it’s doing my fucking head in at the moment. I’m in a full on break up funk for a relationship that ended over 20 years ago with someone I have seen since then, as far as I know. Sad songs speak to me so I avoid them.

It just makes no sense. I’ve been happily married for 10 years and no reason for there not to be decades more. But without the memories I’m a slave to my emotions and am trying hard to rationally deal with it. I’ve had chats with both Mrs Stuff and Miss X (FB pm) and they’re both fine with all this which is great, but I’m not. My head is in conflict and I need to snap the fuck out of it before I risk my marriage as Mrs Stuff gets bored of hearing about it.

Nov 18 2015

Say hello to my little friend

Mr Stuff

I had some more ink done yesterday and who knew I had a vestigial twin inside my leg. Well at least now he can see what’s going on, unless I’m wearing trousers. Hmmm maybe he didn’t think this through 😀

Nov 16 2015

The work do and a challenge

Mr Stuff

Last week I made it out to a work do in a place I’ve never been to before with about 70 other people. That might not sound like much but for me it’s like climbing Everest.

  • A place I’ve never been to is a big trigger. I don’t know the exits for a quick getaway, don’t know how far it is from the safety of home, don’t know how cramped it might be.
  • Then there’s the number of people, 70 odd people and I only knew maybe 10 – 20. That’s a lot of unknown to deal with.

The anxiety was strong but I made it and had a pretty good time and I need to move on the momentum it’s given me. For the last 3 years (it’s longer than that but that’s a rough estimate) I’ve been a hermit, hiding in the house and not wanting to go anywhere or see anyone and that will change.

My goal is to be more social and comfortable with it by Xmas. It’s a big goal and will take me outside my comfort zone but for too long I’ve been resentful that others have lives and do stuff but I don’t. It’s my time to have a life and already have a few things in my diary, some of which are going to be a challenge but that’s just what I’m looking for.

Nov 8 2015

Just (don’t) Say No!

Mr Stuff

It’s really easy to say no, especially when you have a long term illness.

“Do you want to go out” – no
“Do you want company” – no

Two examples of the biggest no’s I go through in the average week, and there are a lot of them. 

Home is safe, I have all my stuff, access to the bathroom (which I need), easy to chill and be alone if needed plus there’s no pressure to do anything. It’s a big rut to fall into and I’ve taken root in that rut. It’s a pattern I’ve fallen in and out of over the last few years and it’s a tough fight to get out of it, especially given I rarely want to do anything anyway. But I need to rip up my roots (metaphorically speaking of course) and get the hell out of it.

I’ve got a work party on Tuesday that I’m going to use to gauge how I’m doing socially. I’m already anxious about it but I’m putting my foot down and telling myself I’ll be going. I’ll be surrounded by great friends and some of the people I love the most, so it will be a safe environment. And a lot of the people there know how I am at the moment and have promised to keep an eye on me and evacuate me back home if I really need to leave. I’m really hoping it’s all ok and I can use it as a springboard to go out more, there are people I miss seeing and I promised myself adventures a few months ago. 

Nov 6 2015

Day 2872, no change

Mr Stuff

I used to have a counter on here charting how many days I’ve been ill but removed it after day 1000 because it made me sad. Today I looked again at the number of days and it’s jumped to 2872, which was quite a shock.

A great friend recently shared another blog post with me all about depression, something that I kinda thought I had but it’s a very personal thing and hard to know. But so much of the post applied to me that it made me quite emotional.

I spend most days just doing things to waste time until I can go to sleep and start the whole process off again. The things I used to take great joy from, computer games as a big example, are just a series of trophies to gain right now. I still use games to de-stress and clear my head but I’m not enjoying it like I used to.

Destiny is a great example of this, I’ve met a lot of great people through that game, some of which I count as great friends. We would play together doing raids every week, it would be a great laugh and I’d get so many strange looks from Mrs Stuff from the things I’d say over the mic. I’d be counting the days until I could play again, my agoraphobia and social awkwardness could take a back seat for once. I spent more time with my new virtual friends than I did with my real life friends which sounds sad but it’s how I was. Now fast forward to now, with my added memory issues, and I just can’t be bothered to play it. Nothing has changed between my virtual buddies and me, I just don’t enjoy the challenge anymore which came as a big surprise to me when I first noticed it.

I keep saying that this memory thing has hit me hard and I really mean it. Maybe it’s just a thing that has bought a lot of other things into focus and made me think more about my illness and situation, it’s hard to say. All I do know is that nearly every morning I wake with teary eyes, for no reason I can explain, nearly everything I do feels like a way of wasting time until I can sleep and I’m a lot more emotional than I used to be (as far as I can remember anyway). 

2872 days and counting

Nov 4 2015

It’s a kind of remembering

Mr Stuff

The other day I stumbled across an old diary I kept in my late teens and early twenties and it was full of stuff that I really should remember. 

The majority of it is whiny crap, the sort of stuff you’d expect from a shy young man, and was quite embarrassing. But there were some big revelations, it mentions the woman I lost my virginity to, Lucie, and I can’t even recognise her from a picture these days. I was a late bloomer so that was in my twenties, but it mentions that I lied about it to save myself from embarrassment of being a virgin, such a silly thing to give a shit about. So much for you’ll never forget your first 😉

It also mentions the woman who was my first love, which makes sense to me given the emotions I get when I see pictures of her. Without the memories of being together and breaking up that’s a tough one to deal with, but knowing Mrs Stuff is by my side makes that a lot easier. 

Also some friends that were my entire world back then are big in the diary but forgotten in my head, sorry Big Stew, Alex and Julie. 

So, as is the way, I burnt the damned thing. I don’t want to have forced memories that I can’t truly remember, and that’s what was in there. It read like an extension of the Adrian Mole diaries and not my past.

There’s another quick snapshot of the crap I’m dealing with right now for ya. It’s not pleasant and I’ve retreated so far into my shell that there’s little daylight coming through but I’ll fight my way back out. It might just take a little while 

Oct 27 2015

Just what I needed

Mr Stuff

After taking it for at least 6 years my doc has taken me off Domperidone, apparently it can cause heart problems. So I’ve moved over to Stemetil as my anti nausea tablet of choice. 

So far the change has given me more nausea than usual, but that’s to be expected since my body needs to get used to the new meds. Hopefully this stage won’t last too long, but then I’ll hit the inevitable withdrawal from Domperidone. I’ve looked it up on Google, always a good choice for health expertise, and it could take up to 8 weeks or so before the symptoms hit. So just in time for Xmas I can expect depression and anxiety, fantastic. Although I’m not really too sure I’ll notice when those symptoms hit