Meeting aliens

I went to my bed early last night, I was so tired that I just couldn’t stay up any longer, but my extra sleep was wiped out by having to get up twice. I should have know before I headed to bed, when have any of my plans to make things better actually worked in the last few years. I thought that yesterday’s laxatives just hadn’t worked, but something was telling me not to take anymore yet, just wait, they worked sort of just before midnight. I say sort of, as it was followed by the wind that had been missing for the last two days and the unmistakable feeling of my internal contents repositioning themselves, a few minutes of relief from the pressure across the top of my stomach and it was back before I could even enjoy it.

I woke this morning both tired and cold, the house seemed to be freezing and 2 hours of having the fire on in the living room, hasn’t really made a huge difference. I had told Adam the other day that as we now do have the central heating off and as the house is holding it heat, that this weekend he could open the curtains for the first time this year, I so wish I hadn’t. We really don’t seem to be able to shack winter off this year, but having built up his hopes, I just can’t let him down as I know how much he hates the fact that I close the house down for winter, however long it lasts. I know it is something that a lot of people don’t understand, but there is a fact, double glazing or not, we loose heat out of the house through our windows, so I keep the curtains closed right through the winter to save money on heating. The nights are still cold, so I at least I can still get away with closing them long before it is dark, I doubt it will end our marriage long argument that sunset is when the bottom of the sun touches the horizon, not when it becomes totally dark, even showing him the proof online, hasn’t changed his personal opinion, he is right, the rest of the world is wrong, I just smile.

We sat last night and had a talk about going to the hospital on Tuesday, Adam wanted to know if I had finished writing the piece that I want to take with us. I had to tell him that I haven’t looked at it for a couple of days, as I just didn’t think the doctor would want to read everything that I had written, it is too long at a page and a half. He hasn’t read it yet, but still thinks that it is a good idea to take it with us and to at least try to get the doctor to read it and add it to my notes as we are in total agreement now that I can’t go on like this any longer. Anyone looking at me in the last few days can see that I am in permanent discomfort and frequently in pain, but getting that across, the actual impact of living like this, well I don’t know how to do that other than in the written word.

When you have been ill for a long time, you begin to see that the worst symptom is the one that is dominating your life at that second. It changes, day to day, week to week, but no matter how bad the pain or discomfort that I am living with right now, at this second, the symptom that is getting to me the most is my brain. I hate this, I hate feeling that I am locked inside with a limited ability to get across what is happening. That stress of just talking to someone other than my family locks me even further inside, it wipes away all those things that I want to say and I find myself searching around an empty mind for not just the words, but the fact as well. Add on to that the stress of being outside my home, my cocoon, and I diminish into a silent lump that says little and when I do, it is interspaced by stutters and word searches that can go on forever. This is one of the problems that I suspect happens to everyone with a condition that affects our brains, when we are talking to people who know that, who understand it, we have a freedom that helps in a strange way to keep us more fluent, even if only in our imagination. Put us in front of someone, especially a doctor who is, in fact, a doctor who doesn’t specialise in our condition, but are a god when it comes to our health and we fall apart. Yet there we are because we have no choice, no other route into getting help, any help with how to manage what is happening to us, searching for the person or solution that can put the breaks on to the spiral we are caught up in.

There is something so wrong with this whole process, this determination by the outside world that we are part of it when, in fact, we are clearly not really part of it at all. I am incapable of functioning like every other person out there, I freely admit that I know without a doubt that I am not capable of it any longer, not just physically but more importantly mentally. It is an alien environment for someone who hasn’t put a foot into it in 8 years, yes I have been out, I have been to the hospital but I still haven’t put a foot outside. I haven’t been out there by myself, having to deal with people, with conversation, or even with talking to a doctor by myself, I always have Adam with me, as I would be a million times worse if he wasn’t there. There is a limit though to what Adam can do for me, he doesn’t live inside my body, he just watches me, he doesn’t know the pain or the discomfort that I am in, he just watches it and rightly or wrongly, I hide as much as I can. Take me out of here, take me into that alien world the place that now means nothing to me other than fear as I might as well be being dumped on the moon, as my memories of it are as clear and as detailed as my knowledge of a world that has changed beyond my comprehension. If those doctors whose care we are in really wanted to help us, they should come to us, they should speak to us in our own environments where there is a good chance that we would be more able to actually tell them the details that they need to truly be able to make our lives better. I know that there is as much chance of that happening as there is of my actually stepping on the moon.

Being housebound changes so much about how we see life and the world we can no longer reach, it is a little like moving city, then returning to it several years later to find that someone has rebuilt it since you left and nothing is where it once was and the people you once knew, have all been replaced. My world ceased to exist 8 years ago, what is out there, the people who are out there, are worse than aliens, as aliens aren’t familiar, aliens don’t speak a language that you sort of understand nor do you feel they should understand you. I am locked in a time warp, I am a person who is out of sight and out of mind of those who I still depend on to make the life I have better. I am in a position that until you share it, I sincerely doubt that anyone can truly understand the impact that it has on everything and every day. That is truly where our care falls down, no doctor who hasn’t been that ill that they have become unable to leave their homes, or who live their lives locked in pain can possibly understand just how it destroys you, all they can do is half observe what is there in front of them, I say half observe as that is all of the picture that is available to them.

Today I am going to try again to put into word something that a doctor will read and will feel, if only slightly what it is now like to be me and hope that somehow they can actually give me the help that I need. It’s now my fifth month of living like this, my fifth month and I have had enough, there has to be something they can do to make it more bearable.

Read my blog from 2 years ago today – 16/05/13 – Withdrawal or Overdose

I have now for years always taken my final medication for the day at 7pm, I started taking it at that time as I was up daily at 4:30 am for work so it fitted well into the required cycle. 7pm is also the time that I always switch mentally from daytime mode to night time, I pour out my glass of coke and replace the contents of my glass with a well deserved Gin and Tonic. Well deserved then as I would have been working from 5am almost….

I am here

In the last few weeks I have had some amazing messages both here and on Twitter, I know it might seem odd for someone who can sit here and pour out page after page about everything from the physical to the emotional, that I honestly never know how to answer them. It is one of the problems that I have battled with for a really long time and I guess it has to do with two issues, the first being that it is something like having a conversation. For too many years the only people I speak to regularly is Adam, Teressa and my friend Jake, outside of that I rarely talk to anyone, partly because there is no one else out there that ever calls me and waiting for me to call is like waiting for hell to freeze, it just won’t happen. I don’t not phone people out of rudeness, but because I either don’t even think about it, or if I do I forget as quickly, or for the biggest reason of all, I have nothing to say that they haven’t heard already and I never actually talk about what is going on with my health with anyone unless I am pushed. Talking to stranger is even worse as I get myself in a knot between my brain not giving me words, stuttering and worse still I totally forget why I wanted to speak to them in the first place. Recently Adam has taken over anything phone based for me, but that clearly doesn’t explain why I can’t type a reply, other than the mental connection of conversation.

One of the things that I find so difficult is the fact everyone is being so nice to me and praising me for what I see as nothing, all I do here and on Twitter is to be me. Praise in any form, doesn’t sit easy with me and replying beyond a stuttered thank you, is impossible. That has nothing to do with my health, although I would say that it has got worse over the last few years, no that has to do with the first half of my life, when I heard nothing that ever even sounded like praise, no matter what, I was always in the wrong. I do find the written word easier than face to face conversation in the respect that I can read it back before I send it, but I have more than once discovered that people don’t take what I say in the way that I mean it, both spoken and written. When I write my posts it is a little like writing to me, I don’t really think deeply about it in any way, what falls out of my head can be just as much of a surprise to me as it is to others, but when I direct that at another person, it seems to fall apart. These days I spend 10 minutes just thinking of how to answer a tweet, without it sounding patronising, pitying or sickly sweet and that is only a max of a 140 character. Ask me a question and I have no problem, say something nice, or tell my your story and I suddenly seem to freeze, so scared of saying the wrong thing. The worst thing is, I so love hearing about other people and I hugely appreciate that someone who doesn’t really know me outside my words, cares enough to even send me two words, yet how to reply is this huge ball of stress that scares the hell out of me.

Life, compounded by brain damage, has turned anything that is even close to social interaction more than just hard, it’s often impossible. When things are bad for me, I can’t even talk to Adam outside of passing comments and that is when I pour things out here, as at least he can read them and find out how his wife is. Yet again my brain has poured out what has turned out to be a complete post, when it was meant only to produce the first paragraph. All I really wanted to say was thank you, to all of you who remind me I am still human and an apology for my remiss in not truly replying as one. Another problem with replying, I think has just been made clear, I ramble on.

This may not be what I intended to write but that is the way with the truth, it just has to be heard in full, as without the detail, it can sound like nothing other than an excuse. When your brain is no longer the way it was and you know that, it is often hard to do what is right at the right time. Every day I read every tweet that was sent to me in the past 24 hours, I search through them for questions or words that make it easy for me to show I am here and I am hearing all of you, some days it is easier than others, some days it is impossible, but it doesn’t mean I don’t care, just that I am locked inside somewhere observing, reading, enjoying, sympathising and empathising, just not capable right then of reaching back. I used to think that being housebound would be the thing that would limit me, but it hasn’t been, I have shouted and shoved my way into the worlds of so many people, some for a short time, others for years now, but there is a limit that I can’t escape and that is the one my brain is building bigger and stronger over time, slowly it is closing down my ability to truly interact, I am just grateful that I can at least express myself and talk here, to anyone who wants to hear me.


Please read my blog from 2 years ago today – 05/01/13 – New leg please!

Well it happened I woke up this morning early because of the pain! What is it they say about don’t mentions something or it will happen, my fault then I guess. It was extreme nerve pain……