At approximately 35 weeks pregnant, I genuinely began to wonder if there was going to be a baby. After all those long painful weeks with nobody listening, after teeth were drilled into or removed unnecessarily, I started to think about ending my life. I was honest about it, to my Partner Sarah and to my Mum, saying that jumping under a bus would make them listen and realise that they'd failed ME. I thought it was the only option available to me and against my better judgement I was talked into seeing my GP, again. I talked to him about my thoughts of suicide, but even then he told me to hold on until the baby was born. He even prescribed medication for me to start immediately after delivery! I remember packing Cocodamol and Diclofenac in my 'baby bag' to take with us when I went into labour.
In all those weeks I was in bed, watching my bump grow, I was too unwell and weak to even feel the inclination to sit at my desk and look on the Internet for more information. I didn't read anything or research anything, I was told it was Atypical Facial Pain and I didn't think I needed to know anymore. In fact, as far as I was concerned, once my baby was born, the medication I had already been prescribed would take away this exhausting pain and I would throw myself back into my life and into motherhood. However, I'd reached a point where I was desperate. Even if I was able to reach my due date, they would still insist I continue for a further 2 weeks before inducing labour. I couldn't face the possibility of enduring another 3 weeks, let alone another 5. After doing everything to protect my unborn child, unless I could get him out and hand him over to Sarah, if I died, he was coming with me. I returned to my GP and I begged him to help me. At this point he referred me to an Obstetrician.
5 days later I was sat in the Obstetricians room, with 7 other health care professionals surrounding me. I had no idea if he could help or if he'd disregard my pain like everyone else had. To my surprise, his reaction was completely different. First of all he congratulated me on getting as far into the pregnancy as I had, which was the first time anyone had really acknowledged my pain and my strength. He said that because I was past 37 weeks, I was considered to have reached full term. He said he would induce labour on the following Monday (this was on Thursday) and that until then, I could take Cocodamol a few times a day. He saved my life that day, and the life of my Son, Harry.
Harry is now 9 1/2 years old. Since his arrival I've done a lot of reading on the subject of facial neuralgia's. I've read a series of medical reviews, journals, newspaper articles and I've even been featured in a few! Like anyone who has searched the Internet I've read the term 'the suicide disease' dozens of times. I could relate to that. I had felt that way and I had my suicide planned out in detail.
I had a good few years where medication and procedures helped me with my pain. I wasn't as active as before and had to be very careful of triggers, but I was able to return to work, albeit not in a clinical role, but as a research nurse. I wasn't the 'fun Mum' I always believed I would be, but I was doing the best I could.
Anyone who's read my blog will know that in 2010 my pain and my situation deteriorated. Despite the same medications and procedures my pain levels increased, I could no longer work and I was back to living in bed. I tried various different medications, but they either didn't suit me or they didn't help and I was back to feeling a similar desperation that I'd felt when I was pregnant. This time I didn't have to consider my unborn child, but now I had to consider my young, adorable, vibrant little boy who I loved with all my heart. The thought of leaving him was unbearable. So I fought for a referral to a Neurologist, who, after seeing a compression on my MRI scan, referred me to a Neurosurgeon.
My MVD experience is detailed in a few earlier blog entries. I won't repeat myself and tell it all again as it was so horrendous, but please take a look at the following entries, if you haven't read them already.
If someone lives with chronic pain, they each have a story to tell. Everyone has their own experiences, of the pain and the impact it's had on their lives. We're individuals and surely we fight to be treated that way, not only by our family and friends, but especially by health care providers. No two scenarios are the same and we are entitled to feel however we feel about our OWN situation, nobody should dictate how we think or feel.
There is a new uprising in the debate about whether TN should be nicknamed 'the suicide disease'. It was given to TN (and several other chronic pain conditions, ie CRPS and Cluster Headaches) at some point in history. At the time those nicknames were given, treatments, medications and surgical options were very different. But despite all those changes, Trigeminal Neuralgia pain is the same as it was decades ago. If the pain doesn't respond to medications, if surgical options are unsuccessful, or worse, cause even greater pain, we are left with serious, invasive experimental procedures that are extremely costly and still can't guarantee any pain relief.
Perhaps situations like mine are rare. I know that only 1% of people who have MVD surgery are left with Anesthesia Dolorosa, but despite that, TN itself is a desperate situation if left untreated or if it doesn't respond to current medications or procedures.
I have little regard for 'nicknames' and I have never used the nickname for TN for public awareness posts. However, I have used the term to describe my condition to friends and family and I know there are times that people have completely ignored the name 'Trigeminal Neuralgia', but stopped and listened when I've told them the nickname and why it was given. It is still well documented that the pain of TN is one of the worst pains known. I struggle with depression as a result of my pain and the impact on my life. I have days, weeks, where I truly believe that I cannot live through another moment of this debilitating pain and I do think about suicide quite regularly. I have one reason for still being here and that's for my child. My love for him is greater than anything in the world. I could never leave him. However, that doesn't mean I don't think about it or consider it as an option, it means that he is the little person that saves me each time I find myself in that dark place. But I don't feel suicidal to scare anyone or to get a shock reaction from those around me. I don't feel suicidal because of a nickname or because I've been told that people do end their lives or even because I've lost friends, with TN, because they felt that suicide was their only option. I feel suicidal because sometimes the pain is greater than my ability to cope with it, because of all that I've lost and still have to miss out on each and every single day. Despite this, I believe I am still a fighter, a warrior , a survivor, and I continue to hold onto the threads of hope, even when those threads feel as thin as a cobweb. I am not a quitter, but at times I do feel defeated.
Maybe I'm the only person who feels this way, but questionable statistics and a historical nickname do not influence how I feel, the pain does. I won't allow anyone to dictate what name I should use, how I can describe it, the impact it has on my life or how I should feel. The nickname doesn't scare me personally, the pain and everything I've been through and am still going through, scares me; because it is worse than anything I could have ever imagined. However I respect that the nickname does scare people, certainly those newly diagnosed and the children and teenagers with TN. What we cannot do, in the midst of a discussion about 'the suicide disease', is belittle those who feel it, who fight the depths of despair that they feel leaves them only that option. Who are we to judge how someone else feels, they haven't lived the same experience or fought the same battle. I live in fear, because of pain, I refuse to live in fear in case my feelings aren't the same as other people's. I cannot live in fear of upsetting or alienating a community that I am a part of, where I belong and feel at home, because they might not 'approve' or 'accept' how I feel. In my mind, Trigeminal Neuralgia (and the other contributing factors that cause my additional pain), can and do drive people to suicide. The nickname, therefore, is very appropriate in my personal opinion.
There are times in life, where having severe emotional or physical pain, leads someone to believe that there is only one option left.
~ Images created by Nikki Samuel ~
