Friday, December 30, 2011

And a Happy New Year!


Christmas has come, and Christmas has gone.
Pressies opened. Thank you said.Wrapping paper has been put into the recycling bin.
Turkey has been eaten again and again. So Christmas is over, it's all done.

Everything dealt with.

Except for pain

This stupid horrible horrendous pain of TN


Can I shout and scream?
Just occasionally I would like to do that.
I really HATE having Trigeminal Neuralgia!


I wish that Trigeminal Neuralgia was as seasonal as a snowman.


Actually, I wish that trigeminal Neuralgia didn't exist! At all!!



As you may have gathered I have had another pretty bad spell.  Actually, really bad spell, or very bad spell would be more appropriate, because it certainly wasn’t pretty.

I thought I was going to get away lightly and have a low pain day on Christmas, but my back decided to play up worse than normal. I don’t know if it was a trapped nerve, but I was struggling to move very much. Hubby did make a delicious Christmas dinner though. And I wouldn't have expected anything other than that from him.

So it was lots of lying in bed and taking extra painkillers on Christmas day and it eventually seemed to ease a bit.

But over the next couple of days as my back improved, my face became worse. No electric shock pains thankfully, just the feeling of constantly being hit hard across my cheekbone with a hammer. My teeth were agony. Like being pulled hard with pliers. Even my gums and tongue were hurting. My forehead felt as though it was being banged against a wall and my head was stuck in a vice.

The pain was so intense. I could have cried....but that would have hurt more. All I could do was take more painkillers and hope that they would send me to sleep. Fortunately they did, and over the last few days, I have done nothing much other than that.

Today it is a lot calmer thank goodness. The teeth pain is there, but not quite so bad. More like what I am used to on a daily basis. My cheekbone and forehead hurt, but not so bad. As the day goes on, I can feel it getting slightly worse, maybe just a reminder to top up on the painkillers. Maybe even time for a wee snooze. So that's what I'll do. Maybe if I could just sleep until midnight tomorrow, it could just disappear with 2011.

I think I have maybe had that wish before. But with every year, the pain seems to get worse instead of better.

Anyway......enough of my moaning. Maybe I should make a New Year's resolution to stop moaning and get on with living!!

I wish everyone a very happy New Year. Wishing you all good health, enough wealth, and plenty of happiness for 2012. And as they say in Scotland, "Lang may yer lum reek!"




Sunday, December 25, 2011

Merry Christmas


Well, the day has arrived.....presents opened, turkey in the oven and now I'm ready for a wee snooze. And apart from opening the presents, I haven't done anything else. Hubby has done the lot - prepared the veg, stuffed the turkey, and wrapped the little piggies in their blankets. Yes, I've got a good man.....one of the best.

I've also got the best dog in the world. Okay, I know everyone says that about their dogs. But mine really is.
He gave us a laugh the other night. My sister had given us a bag of Christmas presents and in it was a present, all wrapped up for my dog from my niece. The bag was sitting on the table behind the couch (his couch). He kept sitting there and every so often looked round at the bag then gave me a look that said, "I know there is something in there for me!" Next he jumped up to try to examine the bag a bit more. He actually reminded me of myself when I was a wee girl. If I saw the Christmas presents before Christmas, there was no stopping me. I just had to have a feel, a shake, a sniff.....I was always so desperate to find out what was inside. My Mum and Dad always had a terrible job hiding the Christmas presents....but they did manage to.
Now, I really didn't thing that I would need to hide Christmas presents from a six year old fox-red labrador. He just couldn't wait to get in at those presents. He was getting so excited and how do you explain to a dog that Christmas is another two days away? It just doesn't work. Besides, it was making us laugh. And as I keep saying, laughing is good.
Then my hubby said that we should take the presents out of bag and lay them on the floor to see if our boy could find the present my niece had wrapped for him. So we did that and lay them on the floor. Red sat eagerly waiting to be told he could go find his. And he went straight to it. No hesitation, just straight to his present. I guess he would have made an excellent sniffer dog for the police, but he might not have been quite as happy. And I certainly wouldn't. Nor would my hubby. He is, as I said, quite simply the best.

How lucky can one person be? A hubby and a dog who can make me laugh.

And laughter is surely the best gift anyone could ever receive.

I hope that you have had a lovely day and been able to find something to make you laugh today.

Merry Christmas






Wednesday, December 21, 2011

Bah humbug.....


Well, thankfully the pain has calmed down a bit and I feel almost normal. But I don’t think I’ll ever feel really normal.

But, just who was the bright spark who decided what normal should be anyway? I don’t think I like that word too much. People should never feel the need to look a particular way just to feel “normal”. It just shouldn’t happen. Learn to love yourself the way you are, that would be my advice to people.

And if I’m getting the chance to dish out advice, here’s another piece - don’t make school kids stand carol singing in freezing cold wind and rain. Hubby took me out the other day to visit family and that was one of the sights we saw on the journey. A bunch of dripping wet, freezing cold kids singing Silent Night in front of half a dozen equally dripping wet and freezing cold women. I think there may be a few houses in that town with rather poorly Mums and children this week.

I must admit that it did make it feel a wee bit more like Christmas. I have been feeling a bit of an Ebenezer Scrooge this year. I just haven’t felt well enough to trail the shops looking for Christmas presents. I haven’t felt like putting up any Christmas decorations. I have hung up our Christmas cards though....but that’s it. There’s not a piece of tinsel in sight. And I don’t think there will be this Christmas.

Oh well.......anyone fancy one of my humbugs?


Sunday, December 11, 2011

Having a Bad Day


I really don’t get this.

I am on Cymbalta, Amitriptyline, Tegretol and use Lidocaine patches on my face and it still hurts so much.

I am adding in occasional pain killers and muscle relaxants.

How can I go on putting all those drugs into my body AND still live with this pain.

At one point last night I felt as though my head was in between a pair of cymbals. Both sides of my head were being hit. My temples were getting it. Then I got struck across my forehead every now and then. My teeth felt as if all the nerves were raw. I ate some mashed potato with cheese for dinner. It was warm, not too hot, but some went near the right side of my teeth. It hurt big time.

Today, the head pain has gone thankfully. But my right cheekbone hurts like I’ve been punched in the face. It’s just constant, from my cheekbone, right around my eye socket to the my temple. I feel like I have earache, but I know it’s just this Trigeminal Neuralgia. My teeth are bad. Two in particular......got that feeling of someone pulling them with pliers.

Plus the rib pain is still here. Just as bad, if not worse. The ultrasound scan was clear, so I know it’s nothing ‘inside’, but whatever is causing it is not nice.

I am so fed up with this.

Just give me one day of feeling normal.


Sorry for going on about it, just really needed to vent a bit.....



Thursday, December 08, 2011

Hurricane

So......in this past couple of weeks, we have had torrential rain which flooded places, damaged roads and made my dog really not want to go outside. He did though......occasionally. He is very good with bladder and bowel control. Thankfully!!

The torrential rain stopped, then the snow started. I thought that the ground would be too wet for the snow to lie. Shows how much I know, doesn’t it. About six inches. That was how much snow we had. No worries for the dog there as he loves the snow. He would stay out all day if he could.

The cat meanwhile, just in case you were wondering, hasn’t set foot outside since we put a stove into the kitchen. Actually, that’s wrong.....we put a smaller stove in the living room a couple of weeks before. The cat found her spot in front of it and hardly moved. Then we got the stove set up in the kitchen, so we didn’t light the stove in the living room. The cat still didn’t move from her spot in front of the living room stove....despite it not being lit. I think she just sat there wistfully waiting for it to heat up. We kept bringing her through to the kitchen, but each time she made a hasty exit to the living room. Maybe she was worried in case anyone stole that spot she had claimed as hers. Anyway, about four days later, she realised that we were getting a nice heat in kitchen, not the living room, so she decided to join us.

Anyway, getting back to the snow. Six inches of miserable, cold, wet, horrible snow we had.......and there’s nothing quite as good as a hurricane to shift it!

Yes, I did say a hurricane!!! Okay, you probably know by now that I exaggerate a bit, but some news reports did say that there were winds of 165mph in some places. Now, that says  hurricane to me.

Thankfully, it sounds like it has calmed down a bit now, just a little bit, but it appears to have brought some more snow with it. Lovely.

This is not Trigeminal Neuralgia weather.

I’m joining the cat in front of the stove for the rest of the winter.

Either that or under the duvet.

Monday, December 05, 2011

Smile

So it’s been another few tough days.

Oh how I would love to write that I’ve had  few good days. I know it would make a lot of people happy as well as myself and hubby. But living with chronic pain doesn’t quite work like that.


Sometimes I worry about writing this blog. I am basically opening up my everyday life to the world. Well, not quite the world, maybe just a few people. But some of those people are close family members. And some of them have read my blog and they have told me that it had made them cry. They understood my life and my condition better.........but they had cried.

I feel bad that I have made people cry. That wasn’t my intention.

But those people have also told me that they are glad I have started writing this. They are glad that they understand better. And they think that writing it must be good for me. I actually agree with that. I am sure that I mentioned it before that I think it’s kind of therapeutic getting it all out, so to speak.

I know I definitely have said this before, but I’ll say it again anyway........I don’t want people to think my life is all doom and gloom. It’s not. Even over the last few days, I could still raise a smile. I’m glad that I can. And I am glad that I have a husband who helps with that. I feel bad for him. I would hate to be in his position - wanting to help, but feeling that there’s nothing I could do. But, he does help me a lot. Apart from everyday chores and cooking etc. he just needs to say something, or do something, and that’s it, I’m away.....laughing....one hand holding my face, the other clutching those sore ribs.

But it’s not just him who can make me laugh or get me smiling. Lots of things do. Simple things. Silly things. Maybe I’ll make a list some day.

I just really, really believe that it is better for everyone to smile. Whether you’re rich or poor, healthy or sick, a smile makes the world a brighter place. Smiles are special. Smiles can say things that words can't. You might just make someone's day by giving them a smile. So next time you see someone without a smile, give them one on yours.

But one more thing about smiles. They're a bit like rabbits. They breed easily. Smiles tend to breed more smiles. Starts with just one, then before you know it, everyone is doing it.

So this is a great big S-M-I-L-E from me.

Now you have to pass it on to someone else.

Thursday, December 01, 2011

Trigeminal Neuralgia Association

Sometimes I write when I'm having a bad day.......don't worry, I'm not running out of things to write about and repeating myself.....I'm not having a very good day, so I'm writing.

Sore face, sore teeth, sore ribs, sore knees........anyway, I don't want to bore you with all that.

Last week I decided to join the Trigeminal Neuralgia Association UK. I should have joined long before this. Membership is a mere £15.

The TNA try to collate and share figures, research and information about TN as well as providing support for members.  They also try to promote awareness and understanding of TN amongst the general public and healthcare professionals.

If it wasn't for groups like this, perhaps no research would ever be done on conditions like TN. It's considered rare (although I would argue this case), so what's the point of governments spending any money on it? I reckon there is a big point!!

So a huge thank you to all of those organizations out there and all of their hard workers, who most often volunteer their services free of charge. I always say that there may be a lot of bad people in the world, but I am quite sure that there are more good than bad.

Tuesday, November 29, 2011

Sometimes.....
Sometimes I write when I’m having a bad day
The descriptions of pain come easily that way
But there are times I’ll wait until the day after
Then I’ll maybe inject a wee bit of laughter
Laughter is important in a life with pain
Somehow it helps to loosen that chain
A smile, a friendly face, can help so much
An understanding letter, a hug or a touch
A call, an email just saying you care
Just letting me know that someone is there
Those are the things which get me through each day
To know people are there, in their own way
E.S.


I am very lucky. I have a lot of people who care. Some people don’t. Some people are dealing with health issues on their own. I don’t know how they cope.

So for all the laughter, smiles, friendly faces, emails, phone calls, hugs and understanding letters, I say thank you. You all know who you are ♥♥♥

Sometimes, they crop up just at the right time and make a difference.



Sunday, November 27, 2011

Dem bones, dem bones.....

One of those days yesterday. My face was bad. My ribs were bad.  I don't think I was out of my bed too much the whole day.

I have had the ultrasound scan for the rib pain, and it came back all clear. So that's at least one bit of good news.

So why all this pain? It feels like my ribs are too tight for my body....like they are squashing me. My GP thinks (and I agree) that the rib pain is related to my back.

This scoliosis has a lot to answer for! It wouldn't surprise me if it also has something to do with the Trigeminal Neuralgia. I did ask the neurologist if that could be the case but he categorically said no, there was no connection between the head and the back. Hmmm.....I think I categorically disagree with that. I seem to remember a song called Dem Bones, Dem Bones. It went something like this :-

The toe bone connected to the heel bone,
The heel bone connected to the foot bone,
The foot bone connected to the leg bone,
The leg bone connected to the knee bone,
The knee bone connected to the thigh bone,
The thigh bone connected to the back bone,
The back bone connected to the neck bone,
The neck bone connected to the head bone,

Okay, I know that human anatomy is a little bit more intricate than just a bunch of bones pinned together with some nails and screws, but surely there is a connection. Surely.....

Friday, November 25, 2011

Hibernation Time

Well, it's official.....winter is upon us.

It's cold outside (now I've got that song in my head!) and we have snow. Mostly rain, but we have had snow.  And it is extremely blustery outside. Time for me to hibernate I think.

I can't say I've ever liked cold weather. I've always had poor circulation, so my hands and feet have always objected. The rest of my body wasn't to keen on it either, but trigeminal neuralgia absolutely hates the cold. Even a blast of cold air from the freezer makes the pain worse.

I now have a lovely collection of hats, scarves, snoods and hoods to keep the cold off my face. Oh yes, I even have a tight knit, double layered, zip front balaclava. Only my eyes are exposed. (I don't suppose I would get very far if my eyes were covered!) Anyway, so far I have only worn it when going from the house to the car, then from the car to the house. I would need to pluck up a bit of courage to wear it in the supermarket. Or the bank. Actually, I don't think I'll ever chance that. The words balaclava and bank just don't seem to go well together.

As it is just now, I walk about holding my scarf over my face and have my hood up on my jacket. I do get some strange looks while walking about covering my face. But, hey, there comes a stage in your life when you have to stop worrying about people giving you strange looks. Maybe I should hang a placard around my neck to let the world know that I have Trigeminal Neuralgia, in case people think I am trying to hide my garlic breath or something like that.

I really don't intend on going out much through the winter. No matter how well covered up I am, I still need to breathe. That cold air shoots right up my nose and feels like electricity hitting my brain. Breathing through my mouth would be even worse.....so yes, I think it is time for me to hibernate.

Anyway, I really must go.....but baby, it's cold outside ♫♫♫


Tuesday, November 22, 2011

New Guest Book

I have added a guest book. The link to it is just up there ⤴ underneath my heading. 

Some people have tried to add comments in the comments box at the end of each post, but somehow that doesn't always seem to work.

Anyway, I thought a guest book might work better.  It will be nice to get some feedback from you. So please drop by and say hello.....or whatever you would like to say.

Writing this blog has become really quite important to me. In some ways I am finding it quite therapeutic as I can get all my moans and groans out of my system. I also know that it is helping people I know to understand what my life is like. I always tried to hide a lot of my pain from people. But if you keep doing that, nobody will ever really understand. I really hope that eventually more people will understand Trigeminal Neuralgia. And obviously, I hope that a real cure can be found for this condition. So many people are suffering from this and other hard to treat conditions every day of their lives. 


Saturday, November 19, 2011

I Miss Me

Been a rough few days here.

Just feel like I am constantly being knocked down with pain somewhere. My trigeminal neuralgia pain has been bad, but as well as that, the rib pain just hasn't eased, my back has been feeling it, my knees, my legs......I really don't know what's going on. Withdrawal from the milky ways maybe??

I hate moaning like this, yet it's all I seem to do these days. That person who never used to complain has gone from my life. I miss her. She always had a smile. She always had time to listen to other people's problems and brush aside her own. She always said she was fine, even though she wasn't. I want that person back in my life but I really don't know how to get her back.

I miss me.

Living with a chronic painful condition does change a person.

It is very difficult to stay happy all the time when there is a constant reminder of the pain. It is very difficult to find energy to do anything, when even getting out of bed hurts. It is very difficult to even hold a conversation with someone about anything other than pain.


Maybe one day, the old me will come back for a visit. I hope she stays. ♥

Tuesday, November 15, 2011

Dear Mum,

Today, just like this day every year, I want to pick up the phone to say “Happy Birthday”, then to come down to spend the day with you.

But, sadly, I can no longer do that.

It’s been almost two years now, but it still feels so recent. It still feels like you should answer the phone when I call the house to speak to Dad. It still feels like you should be there in your house when I visit Dad.

It’s strange. The memories are there.....so clear. You’re there in the kitchen taking some treacle scones out of the oven. You baked them because you knew I was visiting. I can almost smell those scones when I think of it.

Your smile. Your eyes. So happy always.

I have so many memories and they are all so good. I’m lucky to have them.

I am so so lucky and so proud to have had you as my Mum.

So wherever you are Mum, my very special Mum......happy birthday xx





When God created Betty.......

He looked down on earth one day
From that throne of His above
And decided to create a special lady
Whose heart would be full of love
She’d have extra special qualities
Like compassion and understanding
And an extra special nature
Which would never be demanding
He added patience and thoughtfulness
And lots of kindness too
Then he mixed them altogether
And the end result was you!

Love you forever Mum




Monday, November 14, 2011

A verse to start the week........


 
Monday
Today it is Monday
You wonder how I know
Ah, quite simple really
The computer told me so

Where would I be without it
I can’t begin to guess
Because, to put it quite bluntly
My head is in a mess

The memory’s not so good now
And words just don’t come out
Everything I start to say
I quickly start to doubt

I think my brain stopped connecting
With my lips and fingers too
Spellcheck has made this readable
Or else you wouldn’t have clue!

My fingers do their own thing
And seem to dance around those keys
I type Rs instead of Ws
And mix my Gs with Bs

Is it because I’m getting older
Or is it just my meds
I think it’s the second option
They do this to our heads
E.S.

Saturday, November 12, 2011

Acceptance

I remember one time years ago, shortly after I gave up work, meeting a woman who had arthritis in her shoulder. She told me that she would never let it beat her.

Those words stuck with me - but for a different reason than you would think.

Most people would say she’s a brave woman, she’s going to fight against that awful pain, and she’s not going to let it get her down.

But I think that was the day my attitude to life changed.

I had been doing that all my life - trying not to let pain beat me. Constantly fighting against my back pain. Fighting against it day in and day out.

When I was a teenager, I wouldn’t even admit that my back was hurting so much. I just wanted to be “normal”, whatever that is. Of course, I wasn’t normal - I had such an odd shaped back. As the scoliosis developed, it pushed my pelvis out of shape. But I tried to ignore it and the pain. I used to go shopping with my sister and I think I fainted in too many shopping centres for her liking. We were always standing in a queue about to buy something. My back got more and more painful from standing, but no, I wasn’t going to let it beat me. I stood there, then everything would go dark and down I went.

I lost count of how many times I fainted. That was my back’s way of telling me, ‘okay, if you’re not going to stop, I’ll make you!’ Of course, everybody looked at me, then asked when I’d last eaten. They all thought I must have been starving myself. But I wasn’t. The only thing I was guilty of was trying to walk around with a very sore back.

I eventually had to go off sick from work when I was twenty-five. It had been a nightmare. I wasn’t coping. But I just didn’t want to go off sick. No choice though. My back locked up on me and my Mum and Dad had to get the Doctor. I stayed off for about eight months and was determined to get back to work. I was due to get married, and I just didn’t want to start married life being “sick”, so I pushed myself. Actually, I pushed myself for the next two years or so. I was getting up in the morning, going to work, coming home and going to bed. I was fit for nothing. The pain was constant and I was struggling so much. Eventually, when I was 28, the realization came that I would have to give up work.

But I was still fighting. Still not wanting to let the pain beat me.

Then that woman said those words “I’ll never let it beat me”. Everything seemed to fall into place for me. I was in constant severe pain. I thought about it. Those were words I had used myself. Those words meant that I was in a fight. Who with? I was in a fight with my pain. The pain was mine, so I was fighting with myself. But my pain was stronger than me. I would never be able to beat it in a fight.


I think that was the point when I realised that I would have to learn to live alongside my pain rather than be in a constant battle against it. Fighting is negative and by nature, I am a positive person. I learned to listen to my body so much more. I learned that living with chronic pain would have to be part of my life. I learned that if I needed to sit down, I would have to do that. I learned that if my back said just to stay in bed all day, it meant business. I am not trying to say that we have the perfect relationship....I do occasionally try to ignore it, and it complains, but on the whole, I listen and do what I am told, and we get along better than before.

So I suppose I have accepted my life with chronic pain. But acceptance doesn't mean I have to like it!


For me, life is so much easier when there is no fighting involved. Especially when the person you are fighting with is yourself. Fighting uses up so much energy.....and trust me, when you live with constant pain, you need every ounce of energy.


Thursday, November 10, 2011

Weight a minute....

Ok....after all those years of being a big skinny-malink, it is finally happening. I am putting on weight. Too much. When I used to sit and stuff my face with whatever took my fancy (lots of chocolate), I could do so with the knowledge that my weight wouldn't change. Even if I wanted it to. People used to look at me with jealousy in their eyes. "I just need to look at a chocolate bar and my weight goes up" was something I heard from people all the time.  I was even asked if I was anorexic by a GP once. I just couldn't put on weight. And if I was ill, even just with the cold, I lost weight. Hmmm.....those were the days.

When I was ten, the scoliosis appeared. My Mum had me straight to the GP who sent an urgent referral to the orthopaedic surgeon at the local hospital. The surgeon wasn't too concerned about it. In fact, I can still hear his words in my head. "Eat lots of mars bars and it will never be noticeable!" Quite funny looking back on it now. Anyway I took him to his word. I ate lots of mars bars, but it was still noticeable. (As the years went on he did confess that he didn't know much about scoliosis)

Anyway, lots of mars bars, milky ways, flakes, dairy milk and the like later, I am starting to put on weight. Actually I started a couple of years ago. I was even quite excited by it. Finally I wasn't dangerously underweight according to height/weight charts. But gradually it has got higher and higher still. As the scoliosis worsened in my back, so did the back pain. Obviously, more weight for my back to carry would be a bad idea.

Coincidentally, my weight started to rise once I started taking all the different meds for my Trigeminal Neuralgia. So I could blame the meds for the rise. Also, the past couple of years have been particularly bad pain-wise and I have spent a lot of my time just lying in my bed. So I could blame that too. But......the truth is that while I have lain in my bed feeling sore, I have taken a liking to milky ways. Nice and soft, no chewing involved, just nice and sweet.

So there you have it, for the last two years or so, I have stuffed my face with milky ways. Giving myself the excuse that because I have so much pain, I deserve a wee treat. Giving myself the excuse that the tablets I take make me put on weight. Like it was written in the directions, these tablets need a milky way to help them on their way down!

But it has to stop. I will have no clothes that fit if this carries on. I am not dieting. Just not eating any more of those silly milky ways. No more!

Tuesday, November 08, 2011

Lucky Girl!

Well, the dentist visit wasn’t nearly as bad as I expected thanks to a very nice, very considerate and very gentle dentist. There may be some bad ones out there, but thank goodness I’ve got one of the good ones. 

I must be lucky - a good GP, a good dentist, the best ever hubby.......what more could a girl want!

Ouch, ouch, ouch

So.....last night the pain got really bad. Having Trigeminal Neuralgia really is a pain. It had been bad during the day yesterday, but steadily got worse.  I had semolina pudding for dinner. (I do actually enjoy that). Anyway, as the night went on I felt worse. Constant pressure on my cheek bone and head. Had to take off my glasses. My teeth.....well, they were really bad. I wanted to sleep, but I just couldn't.

I use Lidocaine patches and normally put them on at nine at night, when I am taking my nightly dose of meds, but last night I put them on at eight o'clock and took the meds then too. By ten o'clock, thankfully the amitriptyline made me fall asleep.

I woke up early this morning, still not good, but better than last night.

But I have a huge worry today. I have an appointment for a check up at the dentist today. I am petrified. When I go there on a good day, all her poking and prodding turns it into a bad day. So I dread to think how I'll be afterwards today.

But I need to go.

When you get so much pain in your teeth, you don't actually know if it's always TN pain or if it's maybe toothache. So the dentist does need to check in case there's a problem. Sometimes I actually wish she would say, 'Yes, I see a huge cavity there, so you're needing some work done.' I know that must sound crazy to most people, but TN sufferers will understand. At least that would be a reason for the pain, and could actually be fixed. Get a filling done, and no more pain. Sounds good. But in reality, our teeth aren't what's causing the problem. It's that trigeminal nerve. I know a lot of people who have gone to their dentist and had teeth taken out because they thought it would cure the pain. But it doesn't. They get left with the same pain but no teeth.

Oh the joys.......


Monday, November 07, 2011

You're worth it!

We had a friend over visiting last night. We don't see much of her, so it was nice catching up. Chatting and laughing. Good for the soul. Not so good for the face though.

I knew last night today would be be bad, but sometimes a bit more pain is worth it. Like I say chatting and laughing are good for the soul.

Sometimes we have to do things and we just know that our pain will be worse afterwards. But I do believe that occassionally some pain is worth it. Catching up with friends and chatting with them are worth it. If you are taking the time to read this, then you are worth it!  And most definitely pain after laughing is worth it!

I hope that I can always find reason to laugh. Because life with no laughter doesn't sound like a lot of fun.





Friday, November 04, 2011

One of those days!

Sore.

Sore every day.

But today sorer than normal. The constant pain on the right  hand side of my forehead and all around my eye socket. My cheek bone and along my bottom jaw on the right. My teeth hurting today on both sides. Not fun. Feels like they're all being pulled out with pliers. Pain on the left side of my forehead just starting now. And my head is hurting.

This is life with Trigeminal Neuralgia. Not fun at all.

And my ribs are still hurting big time.

Saw my GP the other day and she increased my Tegretol. She also checked my rib pain and believes it is simply rib pain. I've possibly hurt it from coughing or sneezing. But she is sending me for a scan just to double check.

Going back to bed. Hopefully I will sleep and wake up feeling better.

Night night

(that should be day day, but that just doesn't sound right!)

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
E.S.

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.

Yes.....you 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 breeze.....to 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

TGIF

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

So.......here 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.........