The 'Fug' – “There’s someone at the door…”

[JustinP]

Just wondered if this was anyone else’s experience of the 3 month post-VM window? I’m trying to capture a series of milestones in writing so I can refer to them later. Short-term memory issues and all that! Also, as I never, that’s never, want to go back here again...

Who the heck is that at this time? “I’m coming, hang-on”. What day is it? Wednesday, I think. But it was just Saturday. I remember that as I felt better then (I did, right?). The sun was out and there’s nothing to feel guilty about being ill for on Saturday. But what happened to Monday and Tuesday? I'm not much of a fan of Sundays so I don’t miss that one, but seriously. Go downstairs man. Move your legs. Are these stairs really steep, or it is just me. I can’t get out of breath going down stairs can I? That's not right.

11:32am. I guess that’s a respectable time for the doorbell to ring. Darn it. I’m still in my jogging bottoms [substitute PJs, sweats, onesie]. That’s okay, right. Sure, you’re not well. Give yourself a break, and who cares. You're supposed to be resting, but how do you do that again? Anyway, who is it? I used to like guests, I think, though can't quite remember, but what do they want now; can’t they come back later? They can see the curtains are still drawn. I need space.

Deal Lord it’s the meningitis case worker [substitute guest as required]. Of course, it’s Wednesday. I wrote that down somewhere, right? Did I? But where is my list, and what else is on it. Drink water. Yes, that’s always there. Good. I must do that. Drink more water. Yes, it's all good. [Doorbell rings again] No, it's not. Why is this is so hard. I have to take the battery out of that bell, it's SO loud. Was it always that loud, penetrating into my skull like a skewered pig. Pull yourself together man, it’s just the front door. You can do it.

If it Wednesday [the fear is setting in] what did happen to the rest of the week. I need to stop worrying, seriously, or….ah, no, not now, please, no… it’s coming… [metaphyscial hand grabs the backbone and...]Spine Snap I. Damn that hurts...wait, wait, I need to breathe. Why can't I breathe when it happens, or do I hold it? When will it stop, please, make it stop. “Hang on a minute, I'm coming”.

[Looks through the glass] What is he doing here today. Doesn’t he know how sick I am. I can’t do this. It hurts. It really, really hurts. Help me please. Go away, for the love of everything holy, go away……No, hang on, don’t go. I need someone to witness this. I have all my limbs but why does it keep hurting so. He knows right, he really knows what this means and why. He can 'see' it. He can see I'm missing something. “I’m coming…”. What's his name again?

[Door opens] God that is bright, and noisy too. Is that the light making a noise, or...this can’t just be me right. Turn it off please, come on,

- “You okay [insert name]. You don’t look so good.”

“Thank you. I’m…not...not feeling too good today.”

- “Shall I come back another day?”

“NO please, stay….I mean, it’s nice to have someone here. Come in. Would you like a cup of tea”.

- “Thank you, that would be lovely”

Darn it. What have I done. I can't make a cup of tea! Remember what happened last time. Serously, have you thought this through. Have you got the list? No, No! Did you write one? Just tell him you can't do it...

“No problem. Take a seat and I’ll be right there”.

How do you do this for heck’s sake? Oh no. Stop stressing or it'll come again. I can’t do this. Sure, it’s just tea but….what’s the time; did I have those painkillers yet? I must have done as it's past 0900 (when did I get up? is it really Wednesday, and what would I be doing at work now? [getting very scared]) but why aren’t they working. Work damn you! I should never have got out of bed. And why the heck is it the kitchen light so bright. Turn it off quickly before, oh no,….Spine Snap II…

*Spine snap – The implacable feeling that an unseen force has ripped your astral backbone and spinal cord from your body, and cracked them like a wet-towel in a locker room. As the pain waves converge and ‘snap’ with an inaudible deafening crack just below the base of the skull, the pain radiates across your cranium in excruciating ripples. Finally, as the force of gravity increases to that of Jupiter, it pulls you into foetal positon with a half-caught breath and water streaming from your eyes. Why me, please, what did I do to deserve....

[JustinP]

PS, I had occasion to ask my Meningitis Now case worker (Steve) for help this week - which reminded me of the above - and he was there is a matter of hours. Thank you Sir, and I hope I make a better cuppa now. I may have blamed the bags last time, but that wasn't fully true!

[Sjw69]

Hi I understand in some ways where your coming from but you seem to be suffering much more drastically than myself. VM in 2010 left me a total different person than the person I was before and still am. Now I'm very depressed and suffer with anxiety as you seem to worry a lot. I totally lost my memory and speech and had to in 2010. Did you suffer same problem.

[JustinP in reply to Sjw69]

Hi SJW, thanks for responding and apologies for the delay my end.

I pass back through the Fug now and then, but hope to not go back there fully if I can help it! I did reflect after posting and think the timeline (for me) was probably more like 6 weeks to 3 months. From 3 months onwards, things did start to take an upturn. That said, I'm not the same guy anymore and have lost a certain something(s), some of which I'm still lamenting, other losses I've accepted, and still more of which changes I'm confident I have yet to tackle (sometimes when I do something I take for granted, however long the period since I last did it, I need to approach it as if for the first time).

On the worry front, I am definitely more prone to this than I was before, though worry, anxiety and the darker moments occupy different places for me, some of which differences are linked to the circles of control I used to have, and am now clutching at (what I can control; influence, and everything else outside of those). That is, I 'worry' about those things I can't control which I used to be fairly equimonious about (loss of job; house; partner; family; effects of the weather, I know, weird). However un/likely it may be that these are in jeopardy, I fret about them as I feel I can do little to stop them being eroded. This seems to be part of the 'new me' that I hope may settle in time, and feels a bit like someone else is taking my life for a joy-ride and I'm a silent passenger in the back wondering just where we're going! I think it comes from having taken health for granted for so long, my psyche now wonders 'what next?'. Time may tell is this will settle.

The 'anxiety' is something else, totally new and was truly horrific during the Fug-times. It was much more spiky and came in waves of: inability to think or recall clearly, which led to confusion, which ended in anxiety (eg. how do I make tea? but it's just tea, it can't be that hard...blimey, I'm so unwell, I remember how to make tea; what else can't I do either??). This sort of shrunk the circle of my influence much closer to me, and the more I realised I'd forgot, the more the anxiety spiked. I go through this again sometimes but recognise the beast much more now and am more able to swallow deeply and wait for it to pass. (If that stage of the Fug requires heavy doses of codeine/pain-killers, this can be a problem though as the reliance on it to mask the problem makes it harder in the long run. You have to suck it and see I figure and avoiding the inevitable won't fly, for me anyway)

The darker times are their own animal and this is a tight-rope I'm walking constantly at the moment. For me, it comes down to how hard the fall is when I suffer a new loss. Some I can handle, while others could tip me over the edge. I'm going through quite a few changes at the minute, so I'm not able then to say much at this time other than I'm watching this space very keenly as are some very close friends of mine (the ones I've not lost, and in hindsight, the only real ones I had). If you're further along this road than I, I think we're all pretty close behind and can hold each others' hands as the lights go out. Have you tried to get some help to rebalance? I'm being supported by counsellors, Meningitis Now, dear friends, complimentary therapists and others. Without this network I'd be at sea.

On the memory front, I'm starting to finally settle now (I'm now 9 months since a severe VM episode with a full-on Fug period). I find that post-VM, some practical long-term memories just can't be recalled. No matter how much I chase the thread round my head, or feel it on the tip of my tongue, 'looking' for it hurts like heck and drains my batteries totally. These memories started to come back even during the Fug but require more effort than before. I suffer more on the hand-eye coordination front though I know others had real trouble learning to walk again and believe Jonad (who may be reading) was in that camp.

But I certainly suffered a speech issue (which, having a profond stammer as a child, was not surprising to me). Even that was weird though - I could speak about what I needed, what I could see, and how I felt physcially with ease. But as soon as I tried to verbalise how I felt mentally or emotionally, or to discuss a day ahead or yesterday, the neurons shut down and I pretty much passed out. The effort required was too much, and I could only live in the immediate present. That brought on a lot of anxiety, but is much better now and I manage to hide it well. (Always make sure you just talk about today :-))

Overall, my ability to communicate (which I've been doing loads of work on - meditation, reiki, cranio-osteopathy, and some neurolinguistics) and long-term memory recall are 'functioning' okay now, but just need a bunch more effort to get the mental librarian to pull up the archives or open his mouth than before! The short term memory is another story...think collander and you'll be pretty close. I've compensated there with the Queen's form of dialogue - repeat the last 3 words of what you've just heard and everyone thinks you're on top of your game. I then write down any rules + actions I've picked up. A bit of a fudge but it's all I've got at the minute I know this ain't going to get better either. I just need more coping mechanisms to handle it.

Does that help?

[sopie]

Thanks for your post. Yes you have nearly described my case. The pain, the noise, the light, the memory, the noise in your head as your neck cracks and the oh yeah, the shock waves in you back as you walk, or ride in a car, or move, -- not sure you referenced this, but again, it could be my memory gap again.