Day By Day, Hour By Hour.

It has been a long time since my last post. It has been quite difficult to put pen to paper, I haven't been in the right head space. 

My pain has been absolutely horrendous. It has gotten worse and worse, to the point where it leaves me incapable of doing anything. Trigeminal Neuralgia has taken over my life, despite my valiant efforts to fight this monstrous condition. The pain is so intense now, it's difficult to function. I do have good days, where the pain isn't as bad. It allows me to be normal for a while, paint a smile on my face and pretend that everything is fantastic. That is almost as hard as dealing with TN. I will write more about that soon. 

What is normal though? Are any of us normal? I don't think so. I have had so much time to reflect on why TN has decided to invade my brain, why I have horrific Migraines and why I have Fibromyalgia. I admit I have spent quite a lot of time feeling sorry for myself. That was foolish, as it serves no purpose. I see things a lot clearer now, it's like a cloud has lifted. We are all unique, we all have our own little quirks and issues. Some happen to be worse than others, and some people seem to have everything laid out in front of them. Why is that?? 

I have been grieving for the life I used to have. My job, friends, and freedom. Trigeminal Neuralgia has taken it away, snatched it out from under me almost 5 years ago. I am now almost accepting the inevitable truth that I will have TN for the rest of my life. It's a hard pill to swallow, but I know things could be a hell of a lot worse. 

My pain is awful now, so bad that I cry my eyes out. I bury my head in my pillow to hide this from others. This is my Battle and I must fight it. I have wonderful support. My family are there when I need them, and I do need them often. 

Fibromyalgia has also decided to wreak havoc on my body. It's insane. I feel like an old woman at times, every bone and joint in my body scream in pain. My shoulders, elbows, hips and feet are really bad. I am always tired, even if I sleep. It's wearing me out. I have an appointment with the Rheumatologist soon, so lets hope he will have a magic wand and make it go away. If not, I will just have to keep going. Taking things day by day, and sometimes hour by hour. I have managed so far, no point stressing about things I can't control. 

Chronic Pain Times Two

It's been a very long time since I posted anything. Everything has been very difficult and up in the air. In my previous post I mentioned that I have had lots of new symptoms. I thought I was getting a bad flu, but the dreaded flu never came, but the pains became more frequent, more widespread and a hell of a lot more painful! I went to my GP, and he thought I may have Fibromyalgia. It was a preliminary diagnosis, as I only had the pains and aches for a couple of weeks. I was advised to just carry on, and hopefully the pains would subside. Guess what, they didn't. 

Along with the joint pain, my skin is so sore. Clothes feel so heavy, and I am so weak ordinary everyday tasks seem like a huge burden. I am also constantly tired, whether I get some sleep or not. My GP says that it's fatigue, another damn symptom of Fibromyalgia. I have been to my doctors many times since Christmas, and both doctors in the practice agree that as well as Trigeminal Neuralgia, I do have Fibromyalgia. But, Fibro has to be properly diagnosed my a Rheumatologist, so I am hoping with every fiber of my being that it's not Fibro. I would prefer something else that can be cured with some magic pill. Having one incurable Chronic Illnesses is bad enough, but two?? 

My Trigeminal Neuralgia and Migraine pain has gotten worse than ever before. The intensity is severe, the constant burning on both sides is so difficult to handle. The shocks are quite frequent, there are days when the shocks are only a couple of seconds apart. Those are extremely dark days, and there is nothing I can do, and nowhere I can go for help. I have vowed never to go to hospital again. The more I think of it, the more I realise how badly I was treated while there. My new Consultant lied to me, straight to my face. After I was discharged, I was promised I would be seen as an outpatient within 4 weeks. That was in August 2016. It's now March 2017, and I am still waiting for my appointment. This Doctor has helped to completely destroy my faith in the health system here in Ireland. (Which is not hard.) She lied to me, patronised me and she was quite aggressive and really mean. I was at my most vulnerable while there. I reached out and asked for some help, but all I got was false hope and lies. I will never go back there for help. I have to go back for outpatient appointments, but I will never go to A&E and if I ever do get a letter from her, I will tell her what she can do with it. I am still angry about this, and I realise that it can't be just me. How many other people out there have been treated cruelly in our hospitals?

Living with constant excruciating pain is such a battle. Trying to stay as positive as possible, plaster the fakest smile on my face is intolerable, but necessary. Someone very wise said to me recently, "We are all fantastic liars," and she is so right! What do the majority of chronic pain patients say when someone asks how they are?

Do they say;
"I'm ok,"
"I'm fine,"
"I'm good thanks,"

or

Do they say;
"I feel like s**t"
"My pain is really bad today"
"It feels like Freddy Krueger is tearing open my skull, while battery acid is running down my face and some crazy person has attached jump leads to each nerve."



I bet most of us go for the 1st option, where we lie and pretend that everything is sunshine and daisies. This deception is necessary for most of us, but it is draining and exhausting. 

TN Nightmare

I am so tired. I am exhausted actually. Trigeminal Neuralgia pain wakes me almost every night. The pain is so intense that I am afraid to move a muscle. 

Last night, I was awake until 3am, couldn't even think about sleep although I was wrecked. My face was on fire, it was swollen and when I looked into the mirror I got a fright. I looked awful, I have uneven pupils, one side of my face was swollen and I was trying my best not to cry. Crying makes the pain a lot worse. 

I eventually fell asleep, only to wake up at 5.30am with pain radiating down the left side of my body. It wasn't just my face, it was everywhere. I tried to stay calm and it took about twenty minutes for this to ease a little. I got out of bed and walked around my room for a while, just pacing trying to distract myself. 

I was told my a migraine nurse to refrain from taking painkillers as she thinks there is a migraine element to my pain, but I put my back out two weeks ago and it's still painful. I swallowed a couple and went downstairs. She doesn't have to cope with chronic pain, and it's so easy to give orders like this when sitting down and writing my life story down in bullet points. 

Everything seems so much worse at night, it's the silence I think. During the day there are so many distractions. Whether it's writing tonnes of emails, cleaning the house or talking to my sisters and friends, life seems that bit more bearable. Night time is complete and utter hell. I was always a night owl, even as a child, but waking up in so much pain is soul destroying. 

I know that there are support groups that I can reach out to at night, but it never came into my head. This is not the first time this has happened, and I know it's stupid not to call someone, but realistically what can anyone else do? I would just be worrying them unnecessarily. 

As I am writing this, the pain is sharp and burning. Medications I am taking are not doing their job, and it is really difficult to beat back the anger.  

Limitations and Lethargy

My life has changed so much since my diagnosis. Atypical Trigeminal Neuralgia has leached the energy from my system. I am 28 years old and I need to nap a few times a day. Seriously, I am only 28! 

I am so tired all the time, and there are some nights that I get a few hours of much needed sleep, but the way I feel now, I could sleep for a week straight. My dose of Amytriptyline has been increased so I am taking 100mg at night. This is effective mostly. There are nights that I wake up and I want to scream. 

It feels like Freddy Krueger has torn open my face and attached jump leads to every nerve. Showing that I am in pain is exhausting, but pretending that I am ok is completely draining. 

Is it the medications that are causing this lethargy? Is it the fact that I have constant extremely bad facial pain? Is it a combination of the two?

I never, ever would take a nap during the day. Even when I was younger and I had a raging hangover, I would still get out of bed and do something constructive with my day. Sometimes when I was quite ill I would have to stay in bed, but I would usually watch old movies all day, feel sorry for myself, but I wouldn't nap.

Napping makes me feel like a child, but it is something that is necessary to function. 

I have realised that there are limitations now, I can't do everything that I used to do and making peace with that is difficult. I have to be kind to myself, and everyone that has Trigeminal Neuralgia or any other chronic pain conditions needs to do the same. 

Is Pain All That There Is?

Trigeminal Neuralgia pain is the worst I have ever felt in all my life. 

Sleep is difficult, talking hurts like hell and every single thing that I need to do on a daily basis is becoming increasingly difficult. Brushing my hair is hell, showering is pure torture and brushing my teeth feels like I am using a cheese grater inside my mouth instead of a toothbrush, Moisturising also hurts, and putting on make-up is nasty. 

I feel really self conscious without my war paint. I despise leaving the house without it. I know that it is a silly and some people would say stupid thing to worry about, but it is how I am. 

I just want some of this pain to ease. Just a little. I have daydreams often. In them, I am working, living my life and completely pain free. I would give almost anything for this. It is futile, and each day passes with extreme burning pain, electric shocks overwhelm me every couple of minutes and the stabbing sensation is never ending. 

I feel that I am loosing myself. I look into the mirror and my appearance has changed, there is a blank and glassy look in my uneven pupils, my skin is pale and the swollen black bags under my eyes make me look like I am much older than my 28 years. 

I also don't recognise the woman reflected back. I am miserable, and there isn't much in life that brings me joy, and I don't care about very much any more. I do try and put up a front, I paint my face, struggle to tame my hair and plaster a smile on my face. 

My medications make me feel drunk and stupid, and I am positive that my IQ has dropped 50 points since my diagnosis, which for me is torture. 

Sleep is certainly my nemesis of late. 

I wonder how long I can go without sleep? 2 or 3 hours a night is ridiculous. I have to keep hoping that one morning I will wake up, and my first thought or yelp isn't due to pain. I want my vision back, I need it back. I read a lot, and I love to drive. 

Will there ever be an escape from the pain? Is pain all that there is??

Remaining Sane Through The Pain

I have been out of hospital a few days now, and it is seriously awesome to be home. It is just so hard to deal with the pain. Sleep is evading me. I cannot get any rest. Every little task is a struggle. For example, I decided to dust and hoover my bedroom. (No idea how it got so dusty, it was vacant for two weeks). Anyway, after I cleaned a little, I was so exhausted and in so much pain that I had to go lie down. I could barely see, my left arm was completely numb and the pain was excruciating.

My doctors always ask me to rate my pain from 0 to 10. 0 being pain free, and 10 being the worst pain ever. At the moment, my pain level is a 9. Yep, a 9. It is really unfair, and I am struggling to cope.

I was asked a simple question today, and it has been on my mind. Someone I know asked me how was I not driven mad by this pain. I just answered by saying that I didn't know. How am I retaining my sanity though? How are all the Trigeminal Neuralgia sufferers coping with this monster? It would be really interesting to hear other warriors' tales of woe.

I have been ordered to get a lot of rest, my doctors wanted me on complete bed rest, but that isn't possible. Things need to be done, and I go nuts if I sit still for long. I am really independent, and the fact that I can't drive until my vision returns is pissing me off.

Why is this happening to me?


I have filled in my prescriptions and even though my meds have been increased, I am still waiting for my pain to lessen. Remaining upbeat and positive is almost as hard as dealing with the pain. All I want to do is curl up and sleep until the pain goes away.

That would be surrendering though, and I am far to stubborn for that.

My plan for the next few days is to do nothing. Watch a bit of TV, try and read a little and generally keep my mind busy. This will last until the end of the week if I am lucky and I will want to bash my head against a wall. (I have actually considered this during a level 10 attack.) I used to devour books, I could read a 500 page book in less than two hours, now with my wonky vision, I can maybe read 50 pages a day, and that bugs me. Another thing Trigeminal Neuralgia has stolen from me.

What else will TN take from me?

Understanding

What would we do without a support system? I know that I would be completely lost, and without hope. I have a terrific family who really look after me.


I have been active in many support groups online and there is one thing that caught my attention. Trigeminal Neuralgia warriors are finding it so difficult to describe the pain to family and friends, and they feel bereft and slightly betrayed.  


Invisible pain, whether it's TN or any other beastly condition, is impossible to describe accurately. As I have stated before, when you see someone with a visible wound, eg a broken leg, it is so easy to empathise with them. When our pain is internal, nobody can possibly understand.


Fellow TN warriors, think back to the wonderful time that you were pain free. Now imagine that your best friend told you they were in chronic and relentless pain. Would you fully understand? I believe that unless you suffer from pain, you cannot appreciate how life changing it can be.


If you also find that family and friends tend to lose their patience, cut them a bit of slack. They love and care about you, they do understand on some level. Part of your loved ones frustration is helplessness. They cannot bear to see you in pain, but they are powerless to stop it.

I always believe that you should surround yourself with good people that care. One great friend is better than ten acquaintances.


So go easy on family and friends. I know for a fact that TN can change people too. I am Queen Bitch some days. I don't mean to be, but it's hard to smile, laugh and be happy when there are demons dancing under my skin.

If there is anyone out there with a story to tell about their wonderful support system, feel free to contact me. I want to compile a section where we can tell our stories to help each other.

Have a low pain day!

Top 10 Things To NOT Say To Someone With A Chronic Illness

Side Effects

There are certain medications that have been documented as having a huge impact on the pain of Trigeminal Neuralgia. As no two people with TN have the very same symptoms, medications will effect everyone differently.

I have tried lots of different ones. Tegretol was the worst. I did notice some improvement with pain, but the side effects were ridiculous. I started off on a fairly low dose, but it did not agree with me. My GP informed me that it might take a few weeks for my body to adjust to Tegretol, but after two months the side effects were worse. I couldn't drive, I was always stumbling, my balance was gone, I was talking complete nonsense most of the time and my memory was bad, really bad. If I needed to drive somewhere, I couldn't take my tablets, or I had to wait about 3-4 hours after taking them to drive.

That is no way to live life.

I was taken of Tegretol and having already tried Lyrica and Baclofen(that made me collapse), my neurologist wanted to give Lyrica another try. As I have mentioned before, I have been on a very low dose and I am slowly increasing it. There is to date, NO DIFFERENCE in my pain. Over the counter and prescription painkillers have little effect on my Trigeminal Neuralgia pain, they make me sleepy so I don't take them. I am also afraid of becoming dependant on them.

Are the medications worth the side effects? There was a subtle difference on Tegretol, but my stupid body can't tolerate it, even in small doses.

My GP knows that I am sensitive to meds, and I highly am allergic to quite a few, so he is very reluctant to change my meds. I am STILL waiting for an appointment with the pain clinic in Beaumont Hospital so hopefully they will find a miracle drug for me.

Sleep Demons

Will I have another night like last night? Yes, probably. When Trigeminal Neuralgia pain stops me from sleeping, I become a raging bitch. If I'm being honest, I can survive on about four to five hours sleep a night, I'm built that way. But to get NO SLEEP, things get serious.

Sleep is wonderful. It's necessary to keep your mind and body in tip top condition. It allows your body to heal and regenerate after the day's exertions. When that necessary healing power is taken away due to pain, everything seems hopeless.

Anyone with TN, knows that a bad night's sleep is not unusual, and with the cocktail of medications that most of us have to take, sleep is even more necessary. Some meds help you sleep, as in they knock you out! That isn't proper sleep though, and the next morning, I experienced "hangover" like side effects, but without the alcohol induced fun.

Lack of sleep also messes with your head. You become nervous, paranoid and I have even hallucinated. Some things do help me though. If I do an hour on the exercise bike, shower and go straight to bed, I am more inclined to sleep for a few hours. If I read a book, I will stay awake until that book is finished. (It's a flaw, I'm a book addict, so I never start a book at night.)

I have recently started Yoga, and it is truly fantastic. I was sceptical at first, because it seemed like ridiculously expensive stretching, but after watching a beginner DVD and copying some of the easy poses, I was wrecked, and amazingly relaxed. When the session ended and the very flexible lady on my TV screen advised to lie down and focus on breathing, I almost fell asleep.

I neglected my Yoga routine for the past few days and my sleep patterns are ridiculous, so I will try again, and see if it does the trick. Yoga doesn't take away my Trigeminal Neuralgia pain, but it helps me relax, focus on my breathing and it distracts me from the dancing fire ants in my face.

If you are like me and NEED a few hours sleep, try Yoga. Get a DVD, and attempt the so-called easy poses in the comfort of your own home. (I was lucky I did it at home, because I attempted a few poses and fell over, but my dog was my only audience and she doesn't judge.)

Has anyone any tips? Do you have your own sleep demons and what overcomes them?