Feeling Vulnerable

I've put off writing about my feelings of being vulnerable because I know this hurts the most. I am a 39 year old woman, I am married and I have a 5 year old little boy. I have been in charge of a busy hospital ward, I own a house and drive a car. I look after my own finances and pay my own bills. However, for the past 2 years at least I have been unable to function more and more and have now reached a point where I rely heavily on other people. I no longer get my own groceries or my own laundry. If Sarah is going out or visiting her Parents, my Mum takes her place and 'supports' me in taking care of myself and Harry. I get scared if Harry and I are alone, because my pain levels can alter within seconds. If that happens I am unable to take care of me, let alone a young child. At night I take medication which, assuming the pain isn't too great, will knock me out and I worry that I won't be able to wake up for Harry. If I need extra medication and Harry needed me, there is no way I would hear him. If he was unwell, I wouldn't know. If he had a nightmare, I wouldn't be there to comfort him. So, to avoid any of that happening, I am never alone with him at night. That makes me feel completely incapable and unable to take care of my own child. I'm ashamed to admit that I can only function if someone else is with me, most of the time. It truly terrifies me that I am so vulnerable. Without my Mum we would almost definitely be a family in crisis and on the days where both Sarah and I are unable to function, if we didn't have my Mum I have no idea how we would cope. Some people have said that we would cope, because we'd find the strength for Harry's sake. I can only speak personally, but when my pain level is at its worst, there is no chance of me being able to stand up and prepare food or do the things that Harry would need throughout the day. The most I can achieve on those days, is to go to the bathroom, drink something that is given to me and find a comfortable position for my head.

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.

Medication and Stuff

I think we grow up with faith in the medical approach to health care. Medicine is often viewed as being able to 'cure' or 'treat' anything and everything. There are millions of people being kept alive by medicine and others who have exhausted pharmaceutical options for their illness or disease. I started on a combination of medications that, at the time, I thought was really frightening. I was rarely seen taking pain relief for a headache prior to this, so with hindsight any regular medication was going to be unwelcome. I didn't hesitate though. I had taken my first few pills 6 hours after Harry's birth. As time went on, some drugs were gradually increased while others were replaced by much stronger and harder to tolerate medicine. Most of these I had only administered to patients who were acutely ill or dying, which did make me wonder how someone, otherwise relatively fit and well had ended up taking such a horrible cocktail of drugs. Some are licensed for epilepsy, others for palliative care, some for MS, and one for mental health conditions. They were also found, in studies, to have 'good' results for treating neuropathic pain. I still worry, when a warning label reminds you that it is unsafe to flush your medication down the toilet, why someone would consider it safe for me to put into my body! However, when you have severe, debilitating pain, you stop questioning the logic and the reason and find yourself desperate and more than willing to take anything you're given. Pain management try every procedure possible to treat your pain, sometimes with success, others are less fortunate. Not only do you end up on a worrying cocktail of medication, some that your body is addicted too, others that require regular blood tests to make sure they aren't damaging your liver or kidneys and most with horrendous, life changing side effects.


So what happens when you have exhausted all the possible pharmaceutical options for your nerve pain and you have run out of options? This is the situation I find myself in and, until recently I was beginning to wonder whether there would ever be any hope at all. 


I don't go out any more. Every move I make increases my pain level, even reaching to put my seatbelt on causes another electric shock across my face. If the wind blows and brushes my face it almost makes my legs buckle underneath me with the pain. The stores have either heating or air conditioning, which always triggers a flare up and the difference in temperature makes the pain rage. Each footstep I make causes a pounding, pounding sensation in my cheek and upper teeth and anything that makes my heart rate increase causes more stabbing sensations across the left side of my face. I'd take a shower but I'm beginning to wonder if those days are gone now as the shower head cannot be aiming at my face. I even feel the trickle of the water running down my cheek, which causes discomfort. So now I have baths, which aren't too bad in the Winter months, but are a nuisance in the Summer. This pain is so debilitating, it leaves you scared to move, unable to go out, unhelpful in daily chores and reluctant to do anything or go anywhere. Sometimes you are unable to sit up, other times unable to lay down and sleep is usually disrupted making for very long, lonely painful nights. I cannot chew anything that is slightly too 'chewy', lift anything too heavy, do too much talking, especially on the phone, bend over, move too quickly or tolerate any kind of heat. I have a burning sensation in my cheek and under my eye, a stabbing feeling in my ear, electric shocks across my face, severe pain in my top jaw and teeth and pain into my nose. I refuse to make plans, because I cannot predict how I will be on that day and over the years I've lost friends and family members because they don't understand. The pain is often too much to bear, which leads to further episodes of depression and that causes even more reluctance to try anything. Every single day I feel completely useless.


Ironically, that is only the impact of the pain. There are even more problems caused by side effects of the medication. Everybody is an individual and everyone will react differently to each drug, so nothing you read in the patient information leaflets can tell you how YOU will react. Personally I have experienced a lot of weight gain from the insatiable hunger caused by one of the tablets I take. I am constantly sweating from another, I'm drowsy at best, my short term memory is dreadful, I have tingling sensations throughout my body, I get shaky, nauseous, my skin itches, I have a dry mouth, altered blood results leaving me permanently anaemic...to name but a few!


As a result I have been left with very little hope, for now or the future. I follow current research and read about new trials taking place for treating nerve pain. But as time passes, Harry gets older and the more I miss. More importantly, the more HE misses, because if I were well, or better than I am now, maybe I would be able to do more than sit and watch the day go by. With little hope on my side I paid privately to see a Neurologist, not something my own Doctor thought was necessary because he said 'it won't change anything'. But in my constant battle I search for answers, especially an organic cause for the pain. The Neurologist ordered 2 MRI's, one of my brain to look for MS plaques and the other a cross section of the area around my trigeminal nerve. I was so sure there would be nothing to report on the scans, because that is often the case with facial pain. However, the first scan was clear thankfully, the second showed a large blood vessel (artery) pressing on my trigeminal nerve. After all this time, there in front of me was a written report that could explain my pain. He referred me to the Neurosurgeon.


My appointment with the Neurosurgeon caused a lot of anxiety. He was either going to offer me some hope or remind me, as many had before him, that there wasn't any. However, he offered me surgery. Micro-vascular decompression (MVD) is basically brain surgery where they start off making an S shaped incision on your scalp, drilling into the skull, getting behind the brain stem to reach the trigeminal nerve where they separate the nerve and the vessel and put in some Teflon to prevent the nerve being put under the same pressure. The risks are substantial and the Neurosurgeon was very blunt about that. However, it is brain surgery and there are bound to be more potential complications than having your tonsils removed. Unfortunately the outcome is unpredictable. For some it gives complete relief over time, others get some relief, there are those that get no relief at all and other people who have had an MVD only to find they have even more symptoms and problems than they did before.


There is a small chance that having the MVD could give me the opportunity to live again, to free myself of some, if not all the medication and to be able to do more with my life and my family. However, there is also the chance that it could leave me much worse off than I am now. A decision needs to be made...

Expectation

Health and well-being are very precious things. When you're fit and healthy, it isn't often that you wonder what it would be like if you suddenly woke up seriously ill, disabled or with severe chronic pain. When I was running around, working as a Senior Staff Nurse in charge of a busy acute renal ward, answering the hospital bleep and dealing with constant phone calls and, not least, taking care of my patients, I often felt lucky to be living a full life and for being well. People would talk to me about their experiences and I realised, many times, that life was incredibly precious and fragile. Nevertheless, most of the time I lived my life taking everything I had for granted, as a lot of people do.

Since my facial pain started in 2005 I've appreciated life even more. My life is no longer full and I don't remember the last time I had a sense of well-being. In fact my life is entirely predictable. Each day consists of the same things, the only variation being when I sleep or how much my pain is affecting my ability to function. If I'm awake all night I tend to sleep the following day when my body reaches a point where sleep is the only option. If I do sleep at night, it is never enough and I will always have an afternoon nap. The impact on my family and on my life with them is enormous. There are days when I hardly see Harry at all and other days when I'm with him, but the only energy I have to give is conversation or short games on the Wii. I look at him and feel such a sense of loss. I always knew what kind of Mummy I would be, playful, spontaneous and fun but with a firm set of ground rules. Perhaps I was looking at parenting through rose tinted glasses but the reality of being a Mum is far, far removed from everything I expected it to be.

Harry's arrival into this world was an induced labour at 38 weeks because I was suicidal. Being pregnant meant I couldn't take any medication for the pain and I had spent almost 15 weeks in bed in severe pain. Although everything about the pregnancy had gone smoothly I was denied the chance to enjoy it. I loved being pregnant, I was proud of my baby bump and yet the constant pain became too much for me to bear. I was desperate to give birth, not so I could hold my precious new born baby, but so I could be given medication to treat the pain. Once Harry had arrived, I expected the medication to cure the pain and I would return to my normal self. I'm so very thankful that I had no idea how it would really turn out.

Surround-Sound

I've experienced the 'surround-sound' idea of hope several times during my life. Waiting for exam results, graduating as a nurse and interviews for jobs. In 2005 I think my sense of hope was at its greatest. Hoping that I might conceive and that I might have my own child was huge. My hopes for Motherhood!! In May 2005 we were sitting in a local bar in Fuerteventura talking about our 'plans' for our return to England. I remember the evening so well, because I felt like it was a dream and I was desperately hoping it would become a reality.


I didn't have to wait too long before there was wonderful news to share with our families. Pregnant - and after our very first 'try'! It was the most amazing feeling in the world.


Only a few weeks into the pregnancy we had some devastating news, Nan was dying. I did manage to tell her our news and she had a picture of our first scan next to her bed. Seeing Nan deteriorate and watching her fade away was horrendous. There were blessings, she was able to leave hospital and my Mum, in her wonderful way, took perfect care of her. I felt so guilty at this time because I was unable to help as much as I would have wanted. I did small things, but nothing close to level of care I would have liked to have given. Nan died 1 hour after my birthday ended in September. Losing her from our lives was totally devastating. However, we had every reason to be strong because there was a new life to look forward too.


Just a few weeks after losing Nan I found out my Dad was dying. We weren't close, but nevertheless it was very sad news. While he battled against terminal cancer his main goal was to see his first Grandchild. 


In October we went for the detail scan which showed a healthy baby boy! The news was perfect and I remember, so clearly, how much it lifted everyone's spirits. Mum was daring herself to be excited, despite coping with the loss of her Mum and my Dad had convinced his Consultant to give him chemotherapy in an attempt to make him live a little longer.


It was a couple of days later, that I felt a pain in the left side of my face.


That was October 2005 and here we are in January 2012. Perhaps none of the above is relevant to where I am now, but it is important to me to reflect on how much hope I felt that year and to look at the sequence of events that happened prior to the day this pain started. I am surprised that after all that has happened, that I still have hope, but obviously I do, or I wouldn't be writing this.

Hope

'When the world says, 'Give up' - Hope whispers, 'Try it one more time' - Anonymous

I always liked the idea that hope was a quiet voice that only you could hear. This thought usually came to me during the low times in life. I suspect, like most people, hope was a completely different idea or concept when things were going well. Instead of it being a whisper, it would probably be in surround-sound that was impossible to ignore. At those times it would be seen as a great incentive, achievement or even certainty about the future. Hope is the one thing that motivates us to carry on when we feel defeated and to never give up when life is particularly challenging.


It may take a while for me to write what I need to say, but, I need to make a very big decision, probably the hardest decision I have made in my life so far and one that could change my life forever. For this reason, I want to look closely at what is happening in my life right now and revisit some significant times from the past 7 years. Only then, if I listen hard enough, am I likely to hear the whispers of hope that will enable me to make my decision.