Tuesday, November 29, 2011

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

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........

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

Saturday, November 12, 2011


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 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!)