Showing posts with label chronic back pain. Show all posts
Showing posts with label chronic back pain. Show all posts

Saturday, April 02, 2016

Your Life, Your Choice

Since April is "Your Life, Your Choice" month, I felt the need to write a wee blog post about it. Actually, I didn't feel the need at all.....I chose to write it. (Big difference!)

We all go through life making choices. What time to set the alarm? Breakfast or no breakfast? Tea or coffee? Chocolate or......chocolate? Sometimes the choices are simple. Some choices might be easier to make than others.

My Mum used to tell me that I had a good attitude to life. She said that no matter what life gave me, I always tried to smile and just get on with life.

I turned fifty last month (not really by choice๐Ÿ˜ฎ), but I can look back on my life and I realise that my Mum was right. I do have a good attitude and I am quite proud to admit that.

I try to find the positives in everything. When I find only negative, I try my hardest to turn it around. I try to find something to feel happy about. Something to make me smile. Something....anything which can make a difficult situation a wee bit better. And there is always something.

☔️ Caught in the rain on way to the car - thankful we have a car.
๐Ÿ“Not a single bit of chocolate in the house - but I have fruit!
๐ŸŒŽ Can't afford to go on holiday - have you seen the views from my house?

Obviously those are trivial examples, but they are real examples. For me, it seems natural to find positives. But I know it's not the same for everyone. However, it is believed that people have the power to choose whether to live with negativity or positivity.

It has long been established that positive thinking can lead to a happier, more contented life. For people living with a chronic illness of any kind, it is believed that a positive outlook can also help them to cope with and manage their illness.

I would say that in my case, that is definitely true.

When faced with daily health issues and chronic pain, I personally believe that 'choosing' positivity is so important.

I wake up in the morning and don't know if my back will cope with getting out of bed. My husband has to help me with some of my clothes, because I can't manage myself. Am I going to be able to make myself a cup of tea, or do I need to rely on my husband to do that too. My face hurts the minute I wake up. I don't know if the pain from it will stay at that level, or if it will get worse throughout the day. Will I struggle with food? Will I be able to clean my teeth? Will I need to spend most of the day in bed because of pain in some part of my body?

I could easily wake up in the morning and think about those things and be slowly dragged down into a deep black hole. But I don't want to be in that hole and I don't have to go into it. I have a choice.

Instead, I choose to be grateful. I choose to be optimistic. I choose to smile. I choose to be happy. It's my life and I choose to focus on positivity. 


I wake up and say, thank goodness I have a rail by my bed to help me get up; I'm glad my understanding husband is here to help me throughout the day; I enjoy porridge, soup, pasta and other soft food which is easier to eat; I have a dog who laughs as he bounces through to see me when he decides I've stayed in bed too long; a cat who seems to sense when I'm having a bad day and sits by my side.

Do those things take away my pain? No, of course they don't. But those kind of things help me cope with my problems. My life's not a bed of roses, but those positive thoughts help to put a smile on my face and get on with life, just as my Mum used to say.

Everyone has choices in life and there are always positives to be found.

It's up to us to find them.

#YourLifeYourChoice





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Good Pain

Friday, October 25, 2013

SPAM

Picture from the Official UK Spam website
www.spam-uk.com
I hate spam. Always have.

That pink chopped ham and pork which comes in the tin whose purpose in life is to cut half your fingers off...Sorry to any Spam lovers out there, but that stuff just makes me go eeeuuugh.

But my blog post isn't actually about that kind of Spam. It's about the email type of spam. The equivalent of the junk mail which the postman brings on a daily basis. It all gets kind of annoying. I don't want to buy watches, handbags or even those little blue pills. And I don't want to give anyone my bank details so that they can deposit half a million US dollars into my account. I don't believe the story that Great Auntie Doris has left me all that money, nor do I believe I can save the computer world by forwarding on a message about a fake virus. But those are the joys of computing......

Spam on Skype is a little different. Messages, normally from a General in the US army (yeah right!), who is just back from serving in Afghanistan. Wanting some friendship. Oh, and I was nearly always told that I have a friendly face and a lovely smile.

I actually laughed when I received those messages. My Skype profile picture is just a design, there is no photo showing a friendly face or lovely smile. So Skype spam gave me a laugh, but I began receiving the messages like this every day, and they became tedious.

However, I finally found a way to stop them. Went into Skpe profile and unticked the box "female". Simple as that. Not a single message since.

Now on to Facebook. I, along with many others, get the occasional private message turning up from some strange stranger looking for lasting friendship, and they just happened to come across my profile. And guess what.....they are also Generals in the US army who have just been serving in Afghanistan. How boring, can't they think of some other occupation?

Anyway, they are easy to deal with. Hit report....they're gone.

However, the other day, I received one of the above private messages on Facebook. The usual kind of message, but he had also poked me!!! For those who don't use Facebook, you can click a button to poke a friend. A friendly poke to say hello. I'm not overly keen on friendly pokes. I have sore ribs, pokes could hurt.

But this poke was from a stranger. A stranger! Poking me!!

That's worse than spam.  It's even worse than Spam!

Eeeuuugh!!!



Saturday, August 03, 2013

Smile, and the world smiles with you, cry and you cry alone?

With thanks to Nikki Samuel for allowing me to share
I saw the this post on Facebook today by a friend, Nikki Samuel. I asked if I could share it here because it inspired this blog post.

The last few months have felt a bit like this for me. It's not lke me to get down for long, but yep, I got down. And I hate myself for feeling like that. One part of me was helping with the End TN campaign, trying to give others support, and smiling.

Yes, smiling.

But behind that smile it was a completely different story. It wasn't something I could just shake off. Ian could see it and worried and did everything in his power to help me. Some days I felt like I was crying.....but only on the inside. I was still normal on the outside.

The pain, I have lived with for most of my life now, so it wasn't that. I'm used to the pain. I'm used to living my life around the pain. But there were other symptoms this year like vertigo and the numbness on my feet and legs which obviously concerned me. There was a big worry to do with benefits this year too - that has definitely played a part in my mood. As well as that, my father-in-law has had two mini strokes recently. My own Dad doesn't keep the best of health. And of course, regular readers of my blog will know about me having lost my niece last year.

Who knows why we go on a downward spiral sometimes. Thankfully, I didn't reach the bottom (not even very far down), but it is certainly easier to go down than it is to climb back up. I am climbing up though.

But seeing Nikki's post this morning really made me think.....none of us ever know what is behind a person's smile. There could be pain, emotional issues, family worries.

Some people may wear their heart on their sleeve. Other people keep theirs well hidden under thick layers.

Neither way is wrong.....but sometimes we should remember that a person's smile could be hiding a whole lot more than we will ever realise.



Tuesday, May 15, 2012

The Country Road

There is no denying that living with constant chronic pain is not easy.

Through the internet, I have come to meet many people living with pain. We try to support one another. We try to lift each other's spirits. We just try to help one another.

But from time to time, we all wish we could do the things we used to do and to be able to do things faster. But perhaps we need to learn to take small steps, and in taking those small steps, we will notice the things which people taking larger steps just don't notice. Things they take for granted.

Supposing we all have a destination. We have a choice.....we can go on the busy motorway, get really stressed out along the way about the busy, fast moving traffic, or we can choose to go on the quiet country roads, the much more scenic route. The motorway journey will get us there twice as fast, but that country road is slow. We just never know who we might get stuck behind - it could take forever.

But here we are, the chronic pain sufferers, we have no choice, we can't take that motorway journey.

We must take that country road.

We'll get there just the same. But it will be a much longer journey. But imagine what we might see along the way? We have to take our time. That means we can enjoy the scenery. We can take the time to watch the clouds in the sky. We can take the time to look at the birds in the air.

But most of all, we have time for other people on that same journey. And they have time for us. They might stop to spend a few minutes with us, even though it makes their own journey a bit longer. They might even point out something that they noticed along the way.  And, if you need a bit of help, it is guaranteed that someone will come along and give you whatever you need.  If you break down on that country road, a fellow traveller will help you out. They will understand why you have broken down. They will help you. They will support you. They will let you lean on them until you are able to carry on.

Does that happen on the motorway?

Thankfully, there will always be some people who are not chronic pain sufferers who choose to take that country road along with us. They take it because they want to help the people who have no choice. There are many people out there like that. And if you are one of those people I thank you, because you are making someone's journey a little bit easier.

If you live with chronic pain, I hope that you can find some good points to your journey. Take a look across at your fellow travellers and say hello, because maybe right now, they could use a rest and a chat.



Friday, April 13, 2012

Normality

Everyone who knows me knows that I do try to smile even though I am hurting. But occasionally I do have off-days. On one of my recent off days I wrote a poem. A very long poem, called Normality.

I was feeling very sorry for myself at the time and started thinking about some of the things which have gone wrong over my life. Then my doorbell rung. A friend had decided on the spur of the moment to come to see me. Almost instantly, my mood lifted. It was a much needed visit!

I really don't have days like that too often. I just tend to get a smile on my face and work my way through the day. But it was just so nice to get that surprise visit the other day.

I finished my poem when I was in a better frame of mind and have decided to put it here. I'm not putting it here to look for sympathy. Sympathy doesn't help me. I'm actually putting it here in the hope that it might help some other people who are also going through tough times. We all find our own ways of coping with our problems. And no matter how bad a problem seems at the time, we can get through them. Somehow, we get through them.




Normality

I think it began with my back
I was ten
It decided to grow out of shape
I got worse after that
The scoliosis affected my pelvis
I can remember praying
Yes, praying
That I could just be normal
Just let me wake up and be normal
That’s all I wanted
It’s not what I got

I always felt kind of strange
An oddity
But it became worse, not better
The migraines started
Blind spots and sparkling lights
Afterwards, the headache
I was thirteen
Painful joints started too
Knees occasionally, fingers were worst
I wanted normality
It’s not what I got

That twisted back became painful
I was still at school
Sitting in classrooms I felt it burn
I tried to ignore it
I pretended it wasn’t there
I was still praying
For normality
I didn’t want to be like this
Just let me wake up and be normal
That’s all I wanted
It’s not what I got

I got checked out for Marfan’s
Relief!!
I didn’t have it, but I was Marfan-like
I had some of the symptoms
One was a mitral valve prolapse
Amongst the other things
Why me?
What was going on?
Please, just let me be normal
Why can’t I be normal?
I’ve never had that

The back pain got much worse
Much worse
I certainly couldn’t ignore it
It kept making me faint
The muscles were in spasm
I could hardly move
Pain
I was only about twenty-four
Now I prayed that the pain would go
That’s all I wanted
It’s not what I got

Heart palpitations started at the same time
My heart raced
It pounded like it would jump out my body
It could last for a minute
Or as long as two hours or more
Came on for no reason
No reason at all
It was frightening. Scary
Once a week, sometimes more
Was this normal?
Certainly not

The headaches were getting worse
I was under 25
Not always blind spots or sparkling lights
But my face was hurting too
Just constant pain on my head and face
And my teeth. They hurt like mad
Like torture
The doctors said it was migraine
The dentist, well he said it was normal
Actually I know now
It was the start of TN

There have been a few other things along the way
Like Raynaud’s
Plenty of aches and pains, from my ribs to my toes
The shoulders and neck
It just seems that my life has been full of pain
Pain is just part of my life
It’s normal
No point in praying to be normal
Living with pain IS normal for me
I wanted normality
But not like this

So what did I do to deserve all this
Nothing
That’s right.....I did absolutely nothing
I don’t deserve this pain
But I’ve got it. And I need to smile through it
That’s my way of coping
Not by praying
It didn’t change things for all those years
It didn’t take my pain away or straighten my spine
That was what I wanted
But that wasn’t what I got

Life can be very unfair sometimes
Extremely
There is no ‘one size fits all’ for everyone
So everyone is normal
Even me, with my odd back and all my pain
And trust me, there are people much worse
And they’re normal too
So now I don’t pray to be normal
I don’t pray for my pain to be taken away
I laugh. I smile. I stay happy
I cope with my pain that way


I never look ahead to the future
I can’t
I’m sure it would frighten me if I tried
I’ve enough to deal with the present
So I try to just deal with today
Pain is just part of my life
That is normality
So I smile, I laugh, I stay happy
Because that is just how I deal with my pain
I smile, I laugh, I stay happy
But sometimes, I just say ‘why?’
                                            E.S.





Tuesday, April 10, 2012

My Dad

Today is my Dad's birthday. He is seventy-nine......not that you would know it. He certainly doesn't look that age. He has a perfectly full head of hair. With not a single grey to be shown.  He probably makes a few men a fraction of his age a wee bit jealous of what he has growing on his head. And more than a few women. (Including yours truly!)


But, I don't just love him because of his hair. My Dad is a special man. Very quiet, he keeps himself in the background, but should anyone need his help, he is right there. He's always been like that.

I'm not having a very good time with my pain just now, otherwise I would have been down to see him today. I feel bad that I'm not there to say happy birthday to him in person, but he understands.

He always understands.

He has lived most of his life with chronic back pain too, so he really does understand pain.

I hope he has a lovely birthday today. I know my sister will do her best to make it a special day for him.



EDIT

I wanted to add this photo.

This is the birthday cake which my niece and her friend made for my Dad yesterday.




Wednesday, March 28, 2012

Patient or Carer???

Last week was a really bad week with my pain and by Friday night, I really didn’t know what to do, because the pain in my face and head was extreme. I could have cried, but that would have made the pain worse.

Thankfully it started to calm down over the weekend.

By Tuesday, when  I was feeling a good bit better (isn't that typical), I had an appointment to see my GP.

I am sure her other patients must hate me. I must have been in her room for a lot longer than the allotted appointment time . She has increased my Tegretol now to the maximum allowed dose, and she is looking into another drug, should the Tegretol still not work. The problem is trying to work out how the new drug would work alongside the drugs I am on already. She'll figure it out. She tries so hard to help me. I can see in her face that she is actually disappointed when the meds don’t work. Not just from a doctor’s point of view, but she seems to genuinely care about me and my pain.

Back at home, my husband.......well, where would I be without him? He’s down to earth, not all slushy and gushy, but when I am needing his help, he is right there. Getting tablets, making sure I eat, trying to help in whatever way he can. But most especially, trying to take my mind off the pain. Yes, he is still making me laugh. I am so grateful for that. Although, on Friday night, I really don’t think anything could have made me laugh. But he was still there by my side.

So......two carers. One, my GP; the other, my husband.

Now, obviously, I couldn’t trade places with my doctor....I don’t have the qualifications for that.

But my husband, I have to say that I would never, ever want to trade places with him. I would rather keep the pain than give it to him. I would hate to do the job he does. I would hate to be the carer of a loved one. I don’t mean that I would hate to do the physical job of looking after my husband. Of course, I would do that. I would do whatever I was physically able to do for him.

I mean I would hate to watch my husband suffer from the pain of Trigeminal Neuralgia or some other form of chronic pain. I would be crying seeing him in that pain. I couldn’t try to distract him by making him laugh. If he was in so much pain that he was almost crying, I would do the crying for him.

So no matter how bad my Trigeminal Neuralgia or my back pain ever gets, I would rather take the pain than have the tables turned and watch him suffer from it. The physical part of caring is not the issue. It is the emotional part of watching the person you love most in the world suffer, knowing that you can’t rid them of their pain.


His isn’t an easy job. And I really don’t think that spouses or other family members who are carers get enough credit for what they do. At times, it must be physically tiring. But it also must be emotionally exhausting some of the time.

By the way, my husband doesn't read my blog, so I'm not just writing this so that he will read it and know that I appreciate him.  I am sure he already knows that. And the reason he doesn't read it - he says that he lives with me, he sees my pain every day. He copes with it all, but if he were to read my blog, actually read about my pain in black and white, he reckons he would hit a breaking point. Then he couldn't cope.

The chronic pain patient doesn't get it easy. But I believe that their carer doesn't get it too easy either.


Saturday, March 03, 2012

Taking In The Sun


Today, the sun is shining here. A freezing cold wind blowing outside, but right now the sun is shining. I love just standing at the window, taking in that sunshine. I feel like I am giving my body a wee boost. Most people go on a summer holiday for that. But I am quite happy to get that sunshine through the window of my house.

Holidays, I think, are a thing of the past for me. It’s not the actual holiday which is the problem.....just the getting there.

I remember one time going on holiday, many, many years ago, I was getting airport assistance. At the British airports, that meant a wheelchair with someone to push it. In Amsterdam, where I had to change flights, it meant going aboard an electric buggy and a woman driving at a great speed. I had to say goodbye to my family, and I could only hope that I was deposited in the correct departure lounge to meet up with them again. 

The woman who was driving looked at me, and told me I looked good. It was one of those looks that said that she thought I looked too well to be needing airport assistance. I actually thanked her for telling me I looked good and left it at that....she didn’t need to know why I needed airport assistance. She only had to get me to the correct departure lounge.

Actually, I felt lucky, in fact, privileged to be starting my holiday on one of my better days. It could have been the opposite, so I was grateful to be looking good.

Obviously I needed airport assistance due to my back and my inability to walk about two miles across Amsterdam airport. Assistance wouldn’t have been given for my Trigeminal Neuralgia, since obviously I don’t walk using my face. (Although sometimes it feels like somebody is walking ON my face!)

But people do look at you sometimes and question whether you are really ‘sick’ or have a disability. People can often see that my back is painful by the way I am walking. But when it comes to my face.....nothing shows. Nothing at all. And considering the pain, I wish people could sometimes see it. It must be hard for people to understand how much pain someone can be in when they cannot see anything. I know all my family and friends try to understand it, but other people really can’t get it.

It’s like you break your arm, you have a plaster.

You get a bad cut, you get stitches.

Even if you have the flu, people can see that.

But Trigeminal Neuralgia and other invisible illnesses don’t have anything to show for themselves. So sometimes people can look at us and tell us we are looking well. Other than walking about with an axe through my head, and a drill in my teeth, nobody would know that I have any form of facial pain.

But you know what.......even though I might be feel absolutely lousy inside, it is still nice to be told you’re looking good. Especially at my age!!! Though I guess that's nice at any age.

Anyway, enough writing for today.

Off to take in some more sun.





Wednesday, February 29, 2012

Hope

My face wasn’t doing good last week. I mean, it’s never good, but last week it got worse. One day it just went off the charts for me.

This is what used to happen with my back. It would be bad, and I would learn to cope with it at that level. Then it would get worse, and I had to learn to cope with it at that new level.

I suppose that’s what living with chronic pain is like. It’s always there, so you kind of get used to it. Then it sends in a reminder. Just in case you had forgotten. If only..........

I felt like I had been coping with my face a little better before this last episode. I actually felt as though I was getting my life back on track. You know, like actually getting out of bed and getting dressed in the mornings. Then wham, bam, here we go again.


My GP had received a letter from the pain clinic a couple of weeks ago suggesting a new med for me to try. At that point, I was doing that bit better, and the thought of a new med actually scared me. Going through all the starting from scratch with it, the side effects, then of course, the big one - is it actually going to help?

My GP completely understood, and agreed with me. If I am doing ok on what I am on, there is no point in changing. Of course, the pain clinic hadn’t sent that letter just for the fun of it. It was because the pain clinic nurse called to see how I was doing a few weeks ago, right bang slap in the middle of a bad spell. So they were trying to help. It was shortly after I spoke to her that I had that little bit of a better spell. Then I get another bad spell. It can be like being on one of those rollercoasters. One day you're up, next your down. I guess I am just grateful for the 'up' days.

I am hoping that it was just a bad spell last week, and hopefully it will stay calmed down. Just now, it’s not too bad, but my teeth are feeling as though they are on the verge of going crazy. Or maybe that's just me......

But at least if it all does get worse again, then I know that there is another option out there for me. And I suppose it’s good to know that there are other options.

There have to be other options. And there has to be knowledge that someone is wanting to help.

But most of all, there has to be hope of finding a way out of this illness.

We need hope. A lot of hope.

We really need it.........

Friday, February 17, 2012

Coping

Living like this really drags me down sometimes.

The chronic pain.

It just doesn’t go away.

Of course, then I had to have that fall and give myself cracked ribs on top of everything else. That pain is still really bad, but I’m kind of getting used to it now. Just another pain to add to the list.

I do get some good days. But to be honest, the good days aren’t really all that good. And they probably won’t ever be.

I’m not being negative or a pessimist by saying this. I’m being realistic.


I am sure that life is the same for most people who suffer from a chronic painful condition.

Many chronic pain sufferers don’t actually have a life.

They just cope.

Every day.....they just cope. Somehow.

I often say that I think of myself as a positive person. But that’s not to say that things don’t get me down sometimes. That’s ok. It’s allowed. I am human after all. Just as long as I don’t stay down for too long. I need to be able to get back up again. And the longer I’m down, the harder it is to climb back up.

Other people think of me as positive too. A friend told me the other day that I have great spirit. She doesn’t think that she could ever cope with what I live with. But she could. Most people could. That is just how we are made. We have something in us which makes us cope with whatever life throws at us. And when we’re coping with that, it can throw us something else and we learn to cope with that too.

So maybe we are actually all the same. Me, coping with my pain, someone else coping with family troubles. Someone else coping with their money worries or problems at work.

 So maybe I’m not any different from anyone else. Maybe we are all coping. Just coping with different things.

But for most people, they cope as well as having a life.

But for many people with a chronic pain condition - they just cope.

Chronic pain IS their life.





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!

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.