Jan 3 2016

Seeya 2015

Mr Stuff

It’s been an odd year, some highs and lots of lows that kinda balanced each other out.

My illness continues to beat me up although I think I’m getting better with it now, but it can still surprise me. Despite that I’ve been trying to get out more socially with mixed results, I’ve made it out to a few big things but still seem to struggle with just going to the pub with my mates. But I have made it out to 2 gigs, PWEI and Lounge Kittens, and that’s massive.

It’s also a year where I’ve been back in touch with some important people from my past, at almost the same time that I realise I can’t remember my past. Bittersweet much. And that’s been my biggest blow of 2015, I can clearly remember the past few years, vaguely remember back to getting married in 2005 but not much before that. I’ve spoken to people who knew me then, each telling stories of our past, but none of them have triggered any memories of the past. But I’m seeing a neurologist in February and really hope I can get to the bottom of this and that it’s nothing scary. I know my long term illness is serious but not life threatening but this memory loss is a big unknown and scares the hell out of me.

It’s also because of this memory issue and the resulting emotional state that I’ve been a lot more honest with people in the latter half of this year. It’s become important to me that people know how I feel, not that I’ve ever been shy about expressing my opinions. At times it makes for some uncomfortable conversations but it’s not been anything surprising so far, and I’m also aware that I don’t want to hurt anyone’s feelings just to make me feel a little better.

Anyway come on 2016, I’m interested to see what you’ve got planned for me…


Dec 7 2015

I’m not trained for this

Mr Stuff

I was chatting with a good friend recently and a very good point came up, in general men aren’t really good at showing emotion, we’re just not trained for it. I’m not being chauvinistic in saying that, it’s all in our (my) upbringing. I’ve been taught to suppress emotions, bury it all down and hope it goes away. And you know what, it doesn’t.

Usually other stuff gets in the way and it gets lost, but right now emotions are mainly what I run on. There’s nothing to replace them, distract me from them or make them go away and I’ve had to learn quickly how to deal with that. It mainly involves a lot of crying, most of which has been when I’m on my own as I’m still unfamiliar with sharing that much emotion, I think Mrs Stuff may have been as surprised as me when it came out.

I’m also being very careful not to add any more to my overflowing bucket of emotion. I’m deliberately listening to music that I know is safe and not watching things that may set me off. Also not looking at Facebook when I’m at work, or doing anything else that may trigger another little break down at work. 

It’s a narrow path to walk but I need to deal with all I currently have before adding too much more. Although I know that in order to face this thing I will need to, but by then I’ll hopefully be better at dealing with it all.


Dec 5 2015

Vulnerable

Mr Stuff

I’m feeling very emotional and vulnerable today. I met up with Miss X last night and it was great, we chatted for hours about everything, including a lot of stuff about our past together. I only felt a little uncomfortable and once we started chatting the anxiety and nerves went away, although I was a bit emotional.

But this morning I was up at 3 am, probably a mixture of unfamiliar beer, stress, anxiety and maybe a little adrenaline. So I started the day tired, in pain and nauseaus to the point of rushing to the toilet a few times in case I vomited, not done that in a while. Oh and I was still quite emotional from last night. Then it hit me.

I started thinking about last night and that it was the first time I’ve spoken to someone that I have no memory of, everyone else has been in my life recently. And I felt vulnerable, sad, emotional, embarrassed and stupid that my memory has failed. Then came the waterworks, and I think it’s the first time I’ve really cried in front of Mrs Stuff. I feel so broken and all of a sudden it’s become a very real thing, something is wrong and has caused me to misplace my memories which also scares me a little.

I trust Miss X but others from my past could tell me anything and I have no way of knowing if it’s true or not, hence the vulnerability. So I’m going to face this thing head on, I have no real idea how yet, and it will cause me pain and sadness along the way but I need to know how broken I am. I can’t hide from it, I have a real problem and can’t call the A Team, so I’ll come up with a plan.

On the plus side there was a habit that Miss X has that was very familiar, I don’t remember it exactly but the image was familiar and comforting to me. Nothing else triggered any memories but I’m still taking that as a small win.


Dec 4 2015

Broken!

Mr Stuff

I’ve had a big fall in my mental state recently, I was doing really well for a while but have fallen a long way in a short time. I’ve no confidence in myself, I’m seeing criticism where there is none, feeling anxious about everything and generally very low. And it’s all been very sudden which got me thinking is this the Domperidone withdrawal I’ve been expecting?

I’m not looking for an excuse, as I do have a very stressful thing happening this week which could be adding to it, but that alone doesn’t explain why I’ve fallen so far so fast.


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 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.