Monday, October 31, 2011

The dangers of medication

I could write about all the side effects of the strong meds taken for Trigeminal Neuralgia.

I could write about the damage they must do to our organs from long term use.

I could write about the damage they must do to our brains.

But I won't.......I'm just going to tell you that I choked when I took my tablets last night before going to bed and I thought my number was up. I really did. And had hubby not been around to save my life, who knows.....

Ok, so maybe I am exaggerating again, but it was scary.

Friday, October 28, 2011

I don't like being a witch

One of the joys of not working due to my health is being able to watch daytime television. (Did I really just say that out loud?)

Anyway, as Hallowe'en is fast approaching, This Morning's fashion section was Hallowe'en costumes. I just caught the tail end of it, but couldn't believe what I was seeing. Kids costumes costing a fortune. For one night in the year! Have people gone mad? I thought there was no money in the country.

Whatever happened to people using their imagination, some old clothes and crepe paper? When I was young, I can remember my Mum making us costumes. One in particular for me - she emptied her button box, and sewed every single button on to a jumper and pair of jeans. I still don't know what I was supposed to be, but off I went to my party happy as Larry. Another costume, for my older sister this time, was made entirely from crepe paper. She remembers it well. She was a candle! A white crepe paper covered tube over her whole body, with an orange crepe paper flame on the top.

At that time, our costumes didn't look out of place. I don't think anyone ever thought to go out and buy a Hallowe'en costume. There were probably equally wild and worderful home-made out-fits going about at Hallowe'en at that time, as opposed to half the kids wearing the same outfit from the local Tesco or Asda. Speaking of which.....a few days ago we were in Asda, where a gorgeous little girl of about three, was standing clutching a broom, crying her little eyes out, saying, "But I don't like being a witch!" Her parents were oblivious to their daughter's plight and were obviously buying the costume which suited their budget. Poor wee soul, I don't think I'd like to be a witch either. Well, maybe now and again......

Thursday, October 27, 2011

A Magic Wand

Thanks to the wonders of the internet and of course Facebook, over the last year or so, I've "met" a lot of friends who also have trigeminal neuralgia.

I wrote this little verse a few weeks ago for those friends who are suffering from this, and other, just as horrible, conditions.

If I had a magic wand,
I would take away your pain
I'd let you have your life back
So you could smile again

If only it was possible
You would live a different way
No more pain and suffering
Just happiness every day

If only I could help you
I’d take the padlock off the chain
To release you from your life
Filled with chronic pain

If only I had that magic wand
If only that could be true
But a few kind words and a smile
Is the best that I can do

Could whoever owns that horse take it away.......Please

You know that horse? The one that keeps kicking me in the face. Well, it has taken a liking to kicking me in the ribs now too. Just in the right side, which is the same side as the TN affects my face. I feel like I have broken ribs. Okay.....maybe just badly bruised rather than broken, but they are very painful every time I move. It has been like this for a couple of weeks now, but has got worse over the last couple of days. I can't think of having done anything. I have an appointment to see my doctor in the middle of next week, so hopefully she can figure out what's wrong.

I am starting to think that maybe someone has a voodoo doll and is sticking some pins in it.

If I believed in reincarnation, I'd wonder who I would have been in a previous life. Must have been somebody pretty nasty. Hmm....don't think I'll even go there with that thought. Present life is difficult enough to deal with. I don't think I want to go worrying about past lives too.

Tuesday, October 25, 2011

The trouble with new meds

Feeling a little bit off today. Can't explain exactly....just want to sleep. No appetite. Just feel kind of yuck. Started on new tablets for the TN last week and I think that's the side effects starting to kick in. Hopefully the side effects will wear off soon. I need to give them a chance and hopefully the tablets will help.  If only they kicked in doing what they are supposed to do as quickly as the side effects.......

Monday, October 24, 2011

Pet Therapy

 I was chatting with a friend last night about blogs and cats. did read that correctly. Blogs, not dogs.

Anyway, it got me thinking that I better write something in my blog about my cat. But if I write something about the cat, then I need to write something about our dog as well (so he doesn't feel left out). Actually, I am probably wrong in saying he's a dog, because he's probably 70% human and 30% dog.  He understands most things we say, so we had to start spelling certain words so he doesn't understand them, but yes, he now can spell too!

It is certainly true that dogs give unconditional love. Our dog seems to have the ability to know exactly how we're feeling and if things are getting me down he just wants to bring me one of his toys to cheer me up. Either that, or he just climbs up beside me and snuggles in.

Best Buddies
The cat, I am convinced, knows about my trigeminal neuralgia. I only realised this a few months ago. I was going through a particularly bad spell and was lying in my bed. The cat jumped up beside me and I thought she was going to lie on top of my duvet as she often does. But she slowly walked up towards my face. Ever so gently, she kind of brushed her face against the right side of my face (the bad side), and purred softly.  I don't know how long she stayed like that. It didn't hurt, she was just so gentle. I am convinced that she knows about my face and thought she was helping me.

How people can be cruel to their pets, I'll never know. My life certainly wouldn't be the same without those two!

Sunday, October 23, 2011

On a lighter note....

I do have a life which has a lot of pain in it, but I don't want to give the impression that it's all doom and gloom all the time.

By nature I am a happy person. I try to see the positives in life rather than the negatives.  I smile every day and I laugh every day (even though it hurts sometimes).  I believe that we have to take what we're given in life and live with it to the best of our abilities. Okay, so I'm not superhuman and I may have the odd day when I feel pretty down, but mostly, I try to get up every morning, put a smile on my face and get on with it.

It does help having a crazy husband who tries to make me laugh at every opportunity.

Saturday, October 22, 2011

Living with TN

My pain has actually been around for more years than I care to remember, but in the beginning I thought the pain was being caused by migraines or from toothache (even though the dentist could never find a problem). I was constantly telling my doctor about these headaches which hurt so badly and went on and on and on. I remember telling doctors that the pain was just everywhere....even my face was hurting. Nobody twigged. I just kept being given more painkillers and migraine remedies. But nothing helped. I think that doctors probably saw me as a lost cause. I think they probably put the headaches down to the stress of living with a chronic back problem. So they just kept signing prescriptions for me and gave me the sympathetic smile.

I gave up work seventeen years ago and I can remember as far back as then having headache after headache. But over the years the headaches became worse and that ‘toothache’ also became worse. Sometimes it was on the top teeth, sometimes the bottom, sometimes both top and bottom, but it was always there. Dentists seemed stumped by it. One dentist even told me that maybe I wasn’t cleaning my teeth properly!!! Finally, a new dentist I saw told me that this was a nerve problem and sent me to my doctor. It was the first time the word nerve had ever been mentioned. Finally I was diagnosed with Trigeminal Neuralgia.

So here I am now, a few years on. The pain is worse than ever. I have gone through several combinations of drugs, but still the pain worsens. Or maybe my tolerance level has lessened. Actually, I don’t think that is the case. The TN / ATN has definitely become worse over the years.

My ATN affects my head, face and teeth. On a good day, the pain is normally at a level of 3 or 4 out of 10. But that can change instantly. My pain is mostly right sided, however, the left side also gets affected by it from time to time. It can be made worse by a number of things like talking, eating, drinking or cleaning my teeth. But the worst thing for me and many others is cold. TN hates the cold.

It is now the 22nd of October and I really do not want to leave my house. I am scared of leaving my house. Even during the summer, a nice day, but a cool anyone else, that cool breeze was pleasant. But to me, it was frightening because it could make my pain worse. I hardly go out the house. In fact, some days, I hardly leave my bed. When the pain is bad, I just hope for sleep to take over. I don’t socialize. I didn’t do much of that anyway, due to my back problems, but now a social life is completely non-existent. Even the odd trip down to visit my family 40 miles away is now being affected. It’s not nice to go visiting when you are in pain. It is nice to see people. Kind of like a distraction. But to travel 40 miles, to then be in such bad pain isn’t good. TN affects so many aspects of life.

The pain in my head feels as if my head is trapped in a vice which is being turned tighter and tighter. My cheekbone and forehead feel as though they have been kicked by a horse. My teeth constantly feel as though someone has a pair of pliers and is trying to pull them out. I have a deep, deep pain in the back of my head, just behind my ear. When the TN affects me with shock type pain, it tends to be in my front teeth, top or bottom and radiates along my jaw on both sides right to my ears. It feels as if a live electric cable has been put against my teeth. It’s like torture.

I really do not know what life is like without pain. For most of my life I have lived with chronic back, head and face pain. People used to say that I don’t complain despite having these problems. That may have been true, but lately I have complained plenty. Possibly too much.....people possibly don’t really want to hear me complaining. I can’t blame them for that. Besides, it’s my problem, not anyone else’s. But life isn’t easy living with the pain of Trigeminal Neuralgia, and it becomes very difficult not to complain.

Trigemal Neuralgia takes over a person’s life. It also takes over their husband’s /wife’s / family’s life. Fortunately, I have a husband who understands and helps. Not everyone has one of those though. My husband is my rock and all I can do is say “thank you” to him.

What is Trigeminal Neuralgia

So.......Trigeminal Neuralgia (TN)

Here is a link to a web site which explains TN better than I could.

Trigeminal Neuralgia

For me, and so many other people, this disease is like a living hell sometimes. And the times when it’s not a living hell, we live in fear because we know that it’s just waiting to come back.

Like everything in life, TN affects everybody differently. For me I have constant pain which is actually classed as Atypical Trigeminal Neuralgia. Sometimes it’s referred to as trigeminal neuropathic pain or even just chronic facial pain. That seems too simple a name to give to something which is so powerful. I also get the ‘electric shock’ or ‘zap’ type pain of Classical Trigeminal Neuralgia. Fortunately, I don’t experience that too often. But when I do get that, it tends to be in my teeth and is a total nightmare.

Some people can get those shocks constantly at any point of the tregeminal nerve. Some may get the shocks for a time, and then nothing for weeks, months or even years. Other people get hit by those shocks relentlessly.

But for those who have Atypical, the pain never really goes. You have to become accustomed to living with a certain degree of pain, despite being on several medications. Obviously, the meds give problems too, but life without them would be unbearable.

Before being diagnosed with TN, I had never heard of this condition. Not many people have heard of it. Doctors seem very often to be at a loss, as it is such a difficult condition to treat.

It is not a life threatening condition, therefore, research into it does not tend to get a lot of funding. I say that TN is not a life threatening condition....however, it has earned the nickname “The suicide disease”.

Friday, October 21, 2011


Thank Goodness It's Friday......I remember when that meant something.

Friday....the last day of the working week. A reason to celebrate. The weekend was approaching.  A weekend for relaxing, shopping, socializing, doing whatever took your fancy.

But now things are different.  Friday, Saturday, Sunday.....there's nothing special about them any more. A Saturday could be a Tuesday - makes no difference to me. Every day seems the same. 

I had to take early retirement from work at a fairly young age. Actually, I was twenty-eight. I have scoliosis, and it had taken its toll on my back. I had pushed myself too long and too hard to carry on working, so by that age, I was in a pretty bad way. It took a lot of years to figure out that I really shouldn't push myself like that.

It was a big adjustment giving up work at that age, but I had no other option. I literally couldn't have carried on any longer. I consider myself so lucky that I live in a country which looks after people with disabilities.

Seventeen years on, and I still occassionally push myself, and still get frustrated because pain affects my life so much. But now the trigeminal neuralgia actually makes my back problems seem almost insignificant. And my back problems definitely are NOT insignificant.

I can remember back a number of years ago, Cadbury's had an advert for Crunchies. How I loved crunchies. Anyway, the advert used the TGIF slogan, but changed it to Thank Crunchie It's Friday! Friday was the perfect excuse to have a crunchie. As if I needed an excuse to eat a crunchie!! Now, Friday or not,  I daren't even try to eat a crunchie for fear of making the pain in my teeth worse.

So now it makes no odds to me what day of the week it is. Every day is like a weekend for me. Only difference is that there is no shopping, socializing or doing whatever takes my fancy.  And definitely no crunchies! Just relaxing for me. Oh what a life!!

Up late, sore face I am, 40 minutes after midnight and I am still messing around with this blog.

Actually, I would have gone off to bed a while ago, but I am sitting here hoping that my tablets kick in for my trigeminal neuralgia. Tri what? That's the normal response.

Trigeminal Neuralgia

Not nice. Not fair. And not wanting to write about it tonight, so I won't. I'll save that little gem for another day.

All I'll say just now is "AAAAARRRRGGGGHHHHHH......I am sick to the back teeth of living with chronic pain!" Whoever first used that saying must have had trigeminal neuralgia. Right now my back teeth really hurt, my front teeth really hurt, my head really hurts, my face really hurts.

Not much fun....but that's life for some people. But you know what....I still smile. Sometimes it hurts, but I still smile and I hope I never stop smiling.

Now I will get off to bed and hopefully sleep.

Thursday, October 20, 2011

Everybody's doing it........

Blogging that is. Just about everybody seems to be blogging these days.

Must be contagious, since I just had the urge to start one myself. And why not? Well, I suppose the main reason is that I don't have very much to say that would be of any interest to anyone out there, but, hey, just humour me. The novelty will wear off no doubt and Rambling Prose will probably fade away into obscurity before too long.

The first part of the blog was hard enough. I had to think of a name. Hmmm.....that stumped me. Hubby suggested Liz's Ramblings which inspired me to think of Rambling Prose.  So there I was, really pleased with coming up with such an original name for a blog, only to discover it's one of the more common blog names. Did I just say common? Popular! I meant popular!

So.....I've named my blog, I've even designed it (with a nice blue sky background), now I just have to think of something to write about. I'll be back.........