Emotional Detachment

It's interesting, that when I read to this point, I've shown little or no emotion, detached myself from all of it and been nothing more than factual. Facts are helpful when writing information, but how could I be living with this condition and not have strong emotions? I would be mad to think I can purely base my decision on facts, because my feelings are equally as important.


I want to write down a typical day and I may as well start with today....oh heck!!


This week I have had 3 nights with no sleep at all. Whilst I do get a few hours during the day my body clock, times for medication and my day is ruined. I have no energy to push on through, so I tend to find myself sitting in one position relying on online games or a few games on the Wii with Harry. Last night I was in bed just after 1am. I thought I had a good chance of sleeping as I hadn't slept the night before. I got up again, for a quick drink and finally got back into bed at 2.30am. Every night I feel the anxiety of knowing that Harry will wake up at his regular time and obviously, want someone up and ready to throw themselves into the day with him. On the whole we try and share the mornings. If I've been up all night then I'm awake when Harry gets up and I keep going until Sarah wakes up and is able to cope with the day. Other than breakfast, he is very self sufficient. He'll spend time on his laptop, he has lots of games and educational puzzles that he does. He's also got his Wii which is excellent on one hand and yet doesn't allow him to burn off any energy. He also likes it more in 2 player mode, so he's constantly asking for someone to play with him. As an only child Harry see's us as his Parents, but also his siblings to a degree. We're the only people he can share his games with, but also his anger, frustration, joy, fears, anxieties, aggression and of course he's always pushing the boundaries as he gets older. It is really hard for us all, that both Sarah and I have disabilities. Harry has 2 parents who rely heavily on strong medication and who are less able to get out and do things with him. Like all children he gets bored and whilst I know it is perfectly normal, I usually focus on our disabilities as being the reason that Harry gets bored. In fact, anything that I view as a problem or a disappointment in Harry's life I see as a direct result of our disabilities. If I'm honest, I actually blame myself and my condition, because Sarah is more capable of doing things with him and does at least take him out sometimes.


Last night I finally fell asleep. My body and mind were exhausted and despite the pain and the difficulty laying down, I had a feeling I'd reached a point where sleep was inevitable. When I heard Harry chatting away this morning I had my daily morning cuddle, chatted briefly and asked him to wake Sarah up. I just hoped that she would be able to get up with him so I could carry on sleeping. She is suffering with really bad headaches and has just been started on medication for blood pressure. I woke up and saw that I slept until 10am! I am instantly aware of my pain and on the whole it is often quite bad in the morning. Not a day goes by that I don't wish I could just stay in bed and not have to face the world. I know, without a doubt, and this morning is a perfect example, that it's Harry who motivates me to get up. He's reached an age where he makes observations about how much or how little I sleep, he answers his own question when he asks me to do something with him and comments on the times I try and have a lay down. Despite this being Harry's normality for the last 3 years, he is obviously aware that our lives are generally different to that of most people.


When I got up Harry was pleased to see me. I look forward to walking into the living room because I know his reaction will lift me. There is nothing quite like that feeling of being wanted, even if it is short lived! I go straight to the kitchen for my morning medication in the hopes that it will start working as quickly as possible. I always have this fear when I first get up, that the pain won't improve or that it'll get worse. I can't predict how it will be, although on the days it's bad, it remains that way. 
It wasn't long before Sarah was laying in the chair and falling asleep. Her head was getting worse and she needed to close her eyes for a while. I won't deny that my heart sinks when I know it's just me and Harry. I know I can achieve whatever needs to be done, but over and above what he needs is impossible. I'm beginning to wonder if there is any weather condition that my face actually likes. When the seasons change there is a noticeable flare up, but on top of that each season brings something that makes my pain unbearable. For this reason I am rarely outside in the garden. It would need to be a calm day, not too hot and not too cold. This morning it started off frosty as temperatures had dropped to -4 overnight and so far they haven't gone higher than +3 C. The cold on my face causes it to burn and the stabbing sensations begin. So today, unless Harry was comfortable to play in the garden on his own, it meant staying inside. Sadly, Harry doesn't like playing in the garden on his own, despite having his climbing frame, his own little house, a bike and many other toys. What he wants is someone to play his game with him and saying no is so disappointing for him. I have a snood that is useful in some conditions, but if it brushes against my cheek too much or makes my face too warm I am in immense pain and that can last anything from a few minutes to a couple of days. So while Sarah slept, I had a game on the Wii and Harry and I chatted about the different characters. As usual I felt it wasn't enough and that I should be doing a lot more to make my little boy happy. But, I knew that too much movement and exertion would increase my pain to another level. I am so scared that this will happen, I live in constant fear of doing something that will trigger a flare up which could subsequently last for days or even weeks sometimes.


I dread the days when Sarah and I are both suffering so much that we can't function. Knowing that it is just me is hard enough, but at least I know he is safe and warm, fed and sometimes dressed if it is only me who is unable to function. Today we are coping, leaving chores that don't need to be done and managing to cope with the essentials. It isn't a healthy day for any of us, but for a 5 year old I believe it is much worse. We talk about 'pyjama days' and often, if there is nothing happening that day, Harry will ask for a pyjama day. On the whole I see no harm, he is a little person who knows what he likes and a lot of people like a day where they just remain in something comfortable. However, I worry about the impact of him not getting dressed everyday. I get more and more concerned that he'll see that a lazy day is something you have regularly, that he won't wear clothes that aren't soft like pyjama's and that his routine is affected by my lack of ability to cope. Today I failed to get clothes out and to persuade him to put them on despite having bought him some joggers and long sleeve t-shirts that are just as comfortable as pyjama's. How can anyone understand that pain can be so severe it prevents you from helping your child get dressed? Even I wonder how that is possible and I live with the pain! But as I write this, I can't help but wonder how much happens in my day that is habit, perhaps something that happens for an 'easier' life or if these things will potentially trigger an exacerbation of the pain. I suspect the answer is a combination of all of the above.


By mid afternoon my pain levels were rising. I felt myself feeling more drowsy, despite only taking my regular medication. I hadn't added anything extra but I felt as though I could sleep. Initially that's what I was going to do, but with Sarah not feeling good and Harry in need of constant interaction, I knew it was unfair. I also knew I was going to struggle to push on without a sleep, but hoped it gave me a better chance of sleeping tonight. The days are depressing and make me feel very sad. I literally don't remember the last time I left the house with Harry and yet only a few years ago we were pottering around in my little car while Sarah was at work. I cannot imagine having the strength to do that now or to have pain levels that would allow it. I grieve for what we've lost and feel constant guilt and regret for the disappointment that I imagine Harry feels everyday. Staying at home, in the house, gives the mind and soul no opportunity to recharge and awaken any energy. The only energy I feel is stagnant and stale and again, that must impact on a young life. Sometimes I believe that if we could just get out, get some fresh air and a change of scenery then we would all feel better. Sarah does get Harry out, she does manage a lot more than I do but I know that us all getting out together would be healthier and make for a happier home. The hurdles that need to be overcome are often too high, I could maybe do the jump but the landing would hurt and most likely hurt for days. I decide what is 'worth' the pain but, as I'm writing this I wonder if I'm allowing the hurdles to appear bigger than they really are.


By the evening we had eaten in 'shifts'. Harry ate at his usual time, Sarah started it and I served it up. We've tried working it that we all sit at the table together, but so many things prevent that from happening, we accept that it happens whenever it happens! We ate slightly later, another softish diet with little chewing. 
I have reached the point where I know I won't be able to get comfortable if I was laying down, but also that sitting up is now causing my face to start raging. While the fire is burning, I'm not sitting too close, I'm not too hot or cold and I haven't talked a lot. I am feeling frustrated that there is no obvious trigger for the pain to increase. Not only that, but I decided I couldn't do very much today because I didn't want to risk the pain getting worse than it was already, but it has increased anyway!


I don't know what will happen tonight, whether I will sleep or not, but it is obvious from re-reading this that today was one of my good days.

Brain Surgery

All brain surgery is not without its risks. I think that's pretty obvious! But the risks that are specific to MVD are what I have to focus on.


There is a small risk of a stroke, as they need to work so close to the brain stem. I'm trying to imagine how I would feel if I woke up from a surgery that I chose to have, to find out I'd had a stroke. One of the reasons I'm writing this blog is to take a look at my life now, to see snippets of each day and, in doing so, decide if I really can carry on like this. If by writing it down I realise that remaining like this is unthinkable then I have to consider if my only source of hope is to go ahead with the surgery. But, if I wake up and find that I've had a stroke I will need something written down that I can't question, something that made the decision 'easier'.
There is also a small, but real risk of a bleed, again, they are working on the brain and there could be a post-op bleed. I will need clear clarification of why I made my decision. I need to be certain that surgery is my best option for the future, despite the risks.
CSF (Cerebral Spinal Fluid) can leak, because they have drilled into the skull. The leak can happen through the nostrils or from the surgery site. I know this can be treated and the leak will stop, it can take time and can cause severe discomfort, it will mean having to lay completely flat and wait for the leak to finally stop. Having a portal of exit, where fluid can leak, also means there is an entry point for bacteria which could lead to meningitis. I am not going to expand on that, meningitis and its complications are well known. This is, again, a very small risk, but it has to be considered along with everything else. 
Other risks are related to increasing the problems with the facial pain and sensations. You can have complete or partial hearing loss, a facial palsy which leads to that side of your face drooping and being unable to close your eye. Damage to other facial nerves that can cause burning and more pain.


More pain and facial symptoms, results of a stroke, a bleed, a spinal fluid leak or meningitis are what I need to risk to possibly get some relief, or complete relief from my current pain and situation.