It Feels Like I'm Starting Again

It might seem like an exaggeration, but in the last 12 months I have attempted to write a blog entry, only to find I haven't the energy, the patience, or at times, anything new to say. When you bear in mind that a blog is like a diary of events that you feel safe to share with others, I think that says a lot about my life and the isolation I live with.

Over the last 3 years I have come to 'know' my own face. Despite disliking everything about it, I know it well and that makes me very aware of new or changing sensations. I have recently been diagnosed with Cluster Headaches, but somehow that diagnosis doesn't seem to fit. I have also struggled to get an actual 'name' for the burning, dragging numbness in my face. I've had no answers from my own Neurosurgeon, in fact he referred to it as 'unfortunate'. Not to state the flipping obvious, but unfortunate just tells me it wasn't a planned outcome, it doesn't begin to tell me what it is or how to treat it. I have hardly talked to a GP since the one I really felt safe with left the practice a few years ago. The GP that I'm registered with has had some issue with me for a while, so I've felt unable to see him and talk to him. I've relied on telephone calls rather than GP visits. Also, starting to see different Doctors and feeling desperate to find one that listens, understands and wants to help takes up a tremendous amount of energy. Having to tell your story over and over again, is really difficult, but it's essential if you want answers. Sometimes, on this journey with chronic pain, it's alright to stop, rest for a while and then start the search again when you feel ready. I've met so many people along the way who don't allow themselves this time to rest and keep searching, travelling and hoping for answers; in the end, it is the very search itself that makes them feel hopeless and desperate.

Earlier this year I knew I needed to find someone who had a good, if not excellent understanding of TN. The Pain Management Dr I've been seeing has very little knowledge of facial pain but also, gives the impression that he just doesn't want to be there. Rather than discuss my issues, I tend to talk and cry and he tends to 'grunt'. I have no idea if this is in agreement with anything I've said or if he's even aware of what I'm saying. Knowing that this Dr is my only hope for adequate pain relief hasn't helped at all and at times I've felt really desperate for someone to help me, that I've found myself battling more and more depression. It was the realisation that he is never going to help and the serious bouts of depression that made me start to look for someone new.

After reading about different Neurologists, Neurosurgeons and Pain Management Specialists, I found someone who, from the information available to me, appeared to specialise in cases similar to mine. I decided to be proactive and called his Secretary. To my surprise he had availability just a few weeks later at a private hospital in Bristol. 

It was a long, painful journey down to Bristol, as I've only been in the car for a maximum of 15 minutes in over 3 years, but, this Dr finally gave me some answers and some options to explore. He actually couldn't say whether I had TN because he wasn't able to examine my face with any accuracy. My trigeminal nerve is permanently damaged and I do have Anaesthesia Dolorosa (AD), which occurs in less than 1% of people who have a Microvascular Decompression surgery (MVD). This was why he couldn't do a thorough examination of my face.

The Columbia University describe AD as, 'One of the most dreaded complications of the treatment of trigeminal neuralgia.  It occurs when the trigeminal nerve is damaged by surgery or physical trauma, resulting in numbness in the face, with pain present within the numb area. The two main symptoms of AD are facial numbness (much like the numbness from a dental anesthetic injection) and constant pain.  The pain is usually burning, pulling or stabbing but can also include a sharp, stinging, shooting or electrical component. Pressure and “heaviness” can also be part of the pain symptoms. Often there is eye pain.  Cold increases the feeling of numbness sometimes making the face feel frozen'.

I've read a lot about AD since my surgery so the diagnosis wasn't a shock. It was disappointing, because I know there's no treatment and they were words I've been dreading to hear. He did tell me that he's performed Deep Brain Stimulation (DBS) on 4 patients with similar symptoms and all are doing well. However, he also told me that DBS isn't funded by NHS England and that it would cost me £25,000 - £30,000. It's a very long, complicated surgery (some of which I would be awake for) and with no guaranteed outcome it feels far too risky and terrifying. My feelings may change, but I cannot imagine having surgery of any sort, let alone a much riskier brain surgery.

I was also told that I have Occipital Neuralgia (ON). This has occurred following my MVD. The nerve has possibly been damaged during the craniotomy or it has adhered itself to the scar tissue. ON causes pain across one side of your scalp and in my case it radiates from my neck and ends in my forehead, just above my eyebrow. It is a very strong, debilitating pain, making the scalp very sensitive to touch and has similar electric shock like symptoms as TN but over and across your scalp. This diagnosis was a shock and this was when I found out that I don't have Cluster Headaches. He was able to examine my scar and the area surrounding the occipital nerve. He told me that post craniotomy ON is rare, but it does happen. I seem determined to be in the 'rare' group for everything when it comes to anything to do with my MVD and I have to admit I'm angry and frustrated about that.

This Dr recommended Inpatient Pain Management Therapy, but as yet I haven't managed to find anywhere local that runs a programme like this. I can only imagine that weaning off medications and titrating new ones is a very different experience as an inpatient. There would be someone there to talk to about side effects or to decide that a certain medication isn't going to suit you. Treatments for side effects, support, one to one therapy and maybe, ending up on a cocktail of medication that has better results and improves quality of life. This is what I'm hoping inpatient pain management could offer and that gives me hope. 

Why then, if I have a little hope, do I feel so depressed? 

Enough

Have you heard the saying, 'I wish you enough'? 

Well, the story is about an old lady who is at the airport, saying goodbye to her Daughter. Somebody close by heard her say, 'I wish you enough'. After her Daughter had gone through the gate, this person was believed to ask what it meant. According to the story, this was her explanation.

"When we say, 'I wish you enough' we are wanting the other person to have a life filled with just enough good things to sustain them". She explained that it was passed down by generations and continued to recite what she obviously knew by heart.

"I wish you enough sun to keep your attitude bright.

I wish you enough rain to appreciate the sun more.

I wish you enough happiness to keep your spirit alive.

I wish you enough pain so that the smallest joys in life appear much bigger.

I wish you enough gain to satisfy your wanting.

I wish you enough loss to appreciate all that you possess.

I wish you enough hellos to get you through the final good-bye."

Author Unknown

I often think about saying or writing this wish to people, but have always avoided it. I don't want to be too clichéd or feel I have to explain it. I worry that it might sound as though it lacked sincerity. However,  I really like the sentiment.
The Oxford English Dictionary defines the meaning of the word 'enough' as, '

As much or as many as required'. Surely what one person considers to be the ideal amount, a suitable level or appropriate measure will be different to the next person? But the biggest factor in this of course, depends entirely on the subject or topic you're talking about. It could be any of the things written above in the story, in fact it could mean anything.

As somebody with chronic pain I use or think the word 'enough', quite a lot. I describe myself as 'not enough' or 'not good enough' and live with feelings of inadequacy most of the time. I don't earn enough because I can't work, I haven't played with Harry enough because I've had to rest or I didn't achieve enough today because I was struggling with medication side effects. The list could go on. Some may say that it's easier or that we're more inclined to focus on the negatives and I'm sure there is some truth in that. However, I can honestly tell you that there's nothing 'easy' about believing you aren't good enough. But this is the reality, in my experience, of most people who live with chronic pain.

Unrelenting, debilitating chronic pain is exhausting. The implications and the effects of chronic pain are devastating. Depression and feelings of low self esteem caused by chronic pain are truly horrendous. Yet, despite this, you can be enough, achieve enough and feel enough. It's really a matter of realising, that within your limitations, you are here and in some small way, you are experiencing life.

I live for the moments when I feel nice and however short they are, I have to accept that they're enough. I know that I achieve what I can, when I can and either way, I'm not inadequate. I might have days and days where I feel it, but I have moments where I know it's not true. For as long as my life has to be dictated at some level, by this griping, burning, zapping pain in my head and face, I will accept, when I can, that I am enough, I am giving enough and that moments of happiness are infinitely better than not allowing yourself to see them or feel them.

Every single person is given the opportunity to have enough, if they let themselves. The secret is finding the way and not allowing the pain to mask everything that's good in your life. I don't manage this all the time, not even every week, but I'm learning and eventually I'll start to notice other times where I'm being given enough. 

I refuse to live my whole life feeling inadequate. Right now I'll accept that they'll be days, maybe longer, but I won't let myself miss out on having and being and feeling 'enough'.

To anyone who might be reading this,

I wish you enough.

Nikki

                                  Graphics created and owned by Nikki Samuel

Fundraising

In 2013 I was very active in the First International Trigeminal Neuralgia Awareness Day, on, and leading up to October 7th. I had created graphics, a video, had some media attention with CNN and the BBC and whilst not focusing on one area, I wore myself out. Several weeks after the awareness day I decided that I wanted to shift my attention to fund raising for the Facial Pain Research Foundation. We had a lot more people dedicated to the cause and as an International TN Awareness Fighter, I could still be involved in awareness, but as part of a much bigger team effort.

The only problem I could see, was how could one person, who almost never leaves the house and literally has no 'social group' actually raise any money? All the ideas I had involved large numbers of people, walking, racing, sponsoring or gathering together for a fete or gala. Unfortunately, none of these were things I felt able to do. So for someone who spends a lot of her life in bed, I admit that I was beginning to feel defeated. 

But then I started to listen to what my fellow TN sufferers wanted and that seemed to be something to wear; an outward sign that they were supporting a particular health condition/cause. So, I started to put some money aside until I had enough to buy some Trigeminal Neuralgia wristbands in our colour teal. Confident I would make back my initial outlay, I also looked into sourcing a ribbon shaped lapel pin and, within 3 days, I had a design I liked. Somewhere on the other side of the world, manufacturing began! These were items I could sell and it was something I could do on my own, without crowds of people and from the comfort of my living room.

I bought some small teal organza bags for the lapel pin and white organza bags for the wristbands, so I could make the presentation of the items look even better. I bought a large bag of dried lavender and I put a small scoop into each package, to make them smell nice when they were opened. I knew that these items were selling to TN sufferers and I sincerely wanted them to smile as they opened up their package from the UK, not only to find their awareness items, but also to see that I'd given them some thought and paid attention to detail. There are days that TN sufferers can't find anything to smile about and I wanted their package, despite being a reminder of the pain they live with, to give them a reason to smile. That in itself was a big success!

I set up a new email address that I would give out purely for awareness items, I knew I had to keep orders separate from my personal email because I get so confused, so easily. I was helped by a friend and fellow TN'er in the US - Debbie Murphy, to set up a spreadsheet that kept a tally as I added each order. That spreadsheet helped me keep myself up to date with invoice numbers, payment details and also if the package had been sent. But because of my medication and the memory issues I have, I had to keep on top of orders and payments as they came in and I needed to keep my documents and files updated. I did have a couple of days, where my pain levels were too high for me to even package an order, but people were patient and very supportive. Even though some people had paid, they were more concerned about my well being than their orders. I was so touched and calmed by their responses. It took me several days to send out the invoices, which involved a lot of concentration for this medicated mind of mine, but I eventually got through them all!

The wristbands and lapel pins sold out within 10 days. Orders were sent to Sweden, Finland, Ireland, Italy, France, Germany, Scotland, Australia, New Zealand, Wales, America, Jersey and Canada. I sent a few to well known people and celebrities for promotional purposes and kept one for myself for my hard work!

In total I raised £1500 (just under $2500 US).

If we believe that one person can't make a difference, they never will. But my fund raising project proved to me, that we can all make a big difference. If we spend too long looking at what we can't do, we'll lose sight of the things we can do. I was feeling defeated by my personal situation and believed that in isolation I couldn't raise any money. There is something everyone can do, if they put their mind to it. Having paid the large one off payment for the lapel pin mold, I think I will invest in another batch as there are still people asking for them. But for now, I have our Second International TN Awareness Day to think about and I have more people and places I hope to ask for support. My TN prison prevents me from doing a lot, but with my trusty iPad and the ability to send emails, use Twitter and contact people electronically, I remain passionate about TN awareness, the Turn Teal for TN campaign and raising money for the Facial Pain Research Foundation. 

                Graphics created and owned by Nikki Samuel

I'm Stuck and I'm Losing

I am stuck. Stuck in a place of negativity. I feel surrounded by stale and stagnant energy that is coming from within me. It feels as though I HAVE to move on from this place or this 'nothing' life will be all I ever have.

My reasons for starting this blog, as I've stated many times, were to help me make a decision. I needed to decide whether I could or should go ahead and have brain surgery. When I think back to that time and read about my life, I know that I made the right decision. I was gradually getting more and more defeated by the unbearable pain. I knew I couldn't carry on like that. I was tired and broken. My decision to have brain surgery, was to fix this. I knew the risks, I knew the possible complications, but ultimately I hoped and believed that like so many before me, that I would be fixed, mended.

I have focused on the outcome, the horrendous complications, the anger and frustration in other posts. I might have also mentioned my regret. I truly don't remember if I have talked about that. But I do regret the decision that I (ME) made, to go forward, with hope in my heart and positivity oozing from every pore, and let someone (possibly relatively inexperienced) delve into the depths of my skull, with tiny, minute instruments and cauterise, move and manipulate the nerves and very delicate areas of my brain. Yes, the whole of the brain is delicate, of course, but I have no other words that feel suitable to describe the part of me that was being touched and operated on!

I had major complications that almost took my life. With counselling and in time the PTSD will go and the horrendous memories will fade and bother me no more. The physical scars are of no concern. They are an outward sign of an obvious battle.

The surgery itself failed. Well that was a chance I took and people are regularly offered a second chance MVD, even a third chance. I might have been a candidate to try again. But I'm not, and I cannot make sense of that either. But in time, my surgery failing, even while others have success, is just my personal journey and I know I could learn to live with that. I would still have this pain, but I'd have tried whatever was on offer to reduce it. But the complications and the tiny 1% of people who have AD after surgical treatment means I can't try again and, sadly, leads me to the worst part of it all.

So far it sounds like I'm actually finding good ways of processing, coping, learning and moving forward, but THIS is where I get stuck.

My 5th cranial nerve - my Trigeminal Nerve - was 'accidentally', 'inadvertently', 'permanently' damaged. The symptoms this causes, the pain and the discomfort from that damage is unbearable, constant, unrelenting and untreatable. There is NOTHING to even help with nerve damage. No surgery to repair it and no medications to relieve the griping pain or to return the sensation. I'm not only stuck on this, I'm stuck with this and I'm angry, bitter, confused and incredibly depressed. Prior to surgery I had 'why me' days, now I have 'why me' weeks and there's no answer. It's my journey, it's my experience, it's mine, mine, MINE! The answer to the problem is supposed to be inside me. But I can't find it! I hide behind my humour, I prefer to support others, I would do anything rather than face my own reality head on and not give up until I've conquered it.

I've tried Mindfulness, Meditation and Guided Meditation, Crystals, maintaining my body temperature as close as I can within 2 degrees (between 18 and 20). I've tried distraction, laughing, colouring and writing. Despite the pain, I've tried talking, Spiritual Healing, Massage, Counselling, chewing, warmth, cold, steam, reiki, facial massage and exercises that were given to me by the Speech and Language Therapist. But the feeling, the pain, the dense, burning numbness is no different now than it was when I woke up in recovery in March 2014. So I have to stop looking for pain relief and learn new ways, more effective ways, of living and coping with it.

I have to find a way to live with this, to make this 'OK' and to stop feeling sorry for myself. I need to move on and find some way of resembling the Nikki I used to know. One thing that isn't helping and is only going to get worse is the fact that I feel so defeated by this, I've given up trying. The less I've moved around, the more my muscles and strength have been lost and wasted. The more I've felt that my body is failing me, the more I've sat back and let it. I've gained more and more weight and now I doubt I could even walk further than the end of the garden and back.

I'm not an inspirational woman, I'm not a survivor, a warrior or a fighter. I've turned into a quitter. I raise awareness rather than lift my head up and face the truth. I have lost my fighting spirit and unless I find it again, I'm going to lose the fight completely. My body won't withstand much more and rather than keep saying these things in chitter chatter, letting out just small bits here and there, standing, blinded in the headlights for all this time, I need to find a place to start and then START. Talking about it and thinking about it is useless, unless it's because you're planning and preparing yourself for change. This post isn't for sympathy or words of comfort, I genuinely, truly need help. 

I need to lose weight. Walk a little everyday no matter how I'm feeling or how much it will impact on my pain - sitting is still very painful, moving is very painful, but looking at 4 walls every single day is painful emotionally and spiritually.

Push myself, one small step at a time to do something - but I have to achieve something more than some pretty colouring or raising awareness of a disease that I can't even fight myself.

Make healthier choices about EVERY aspect of my life

And I need to let go of anger, bitterness, frustration, sadness and regret. Bad things happen. I need to find a way to make peace with that. Only then will I find a way to live with this level of pain. 

                      

                                          Author Unknown. Design by Nikki Samuel

  

Complaining

Searching tirelessly for email addresses, cutting and pasting the information, adding the ribbon, making sure I make note of who I've contacted, saving everything to the 'Lighting Requests 2014' folder...and on and on it goes.

Yes it's relatively tedious, but again this year there aren't many doing it. Yes, there are more than last year, of which I'm VERY grateful, but I'm curious why more people don't get involved in this aspect of the awareness day.

It is very, very satisfying and fulfilling when a place says yes, and in the UK a few people have really added to our success. However, either places say no, because of money, or they don't support causes, or they have a list of causes that they already support, or they simply don't have the facilities, or they just don't reply.

I appreciate that people don't want their name in the newspaper or they don't want to appear on their local news (that's proven to be the most effective and yet people aren't prepared to do it), but a lighting request is something they really can achieve. As there are many more if us involved in this years campaign, there is a lot more support and I for one, don't feel as stressed or under pressure. The result of several very stressful months really took their toll last year and I was physically and emotionally unwell for quite a few months.

What I really don't understand is this.

Some of us are doing everything we can possibly think of to raise awareness. Talking about and focusing on the actual awareness day is such a positive thing. That's the day we can explain why a nearby landmark is lit up in a glorious teal colour. That's the day we will get the media involved, we will make people listen. And yet, every single day there are people complaining that TN and a Facial Pain Disorders aren't understood or they remain unknown. These people are free to get involved and help raise awareness, or to help educate their local community, hospital, dental practice, chiropractor, etc etc. But instead, they won't do any of those things. They won't donate £5 or $5 or any other amount to support the hard work that's happening by some individuals who want to light up a famous old landmark. In the UK a lot of places don't have the facilities to light up, let alone in a certain colour. Anyway, my point is, that people appear to prefer to complain about the lack of awareness, than to actually help out and show some faith in what we've already achieved.

It is a mentality that I'll never understand. In my attempts to not give a rude response, I tend not to reply if someone in a support group complains about lack of understanding and awareness. My reply would be easy, I'd simply say 'Change it then'!