Showing posts with label TN. Show all posts
Showing posts with label TN. 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





If you enjoyed reading this blog post, you may also enjoy :

Good Pain

Friday, March 21, 2014

What's Worse Than Spam?

I once wrote a blog post about how much I hate spam. Well, there is something else I really hate even more than spam. Can look a bit like spam, even sounds like spam....but it is worse than spam.




The internet must be like a playground to scammers. Some of them are very clever. They do their research, find the right audience and find a weak point. Then they prey...

People with illnesses and disabilities are often that target audience. We have a weak point....we don't want to be ill or have a disability. We want a cure, we want to get better, we will try almost anything. So the scammers throw us a line and reel us in.

Whether they try to sell us supplements with amazing claims that they will cure nerve pain, or some new fangled machine which will do wonders for our painful bodies, they shout out one word : SCAM

Their websites normally have testimonials written by "clients"......in actual fact, those testimonials are often made up by the company.

When we started our Trigeminal Neuralgia awareness page, a young woman came onto the page and said she used a certain (very expensive) supplement and her TN was cured. She claimed to have lots of friends with TN, and they used the supplement too, and they were all cured. Amazing! Truth was that she didn't even know what Trigeminal Neuralgia was, and she knew nobody with the condition. She eventually admitted to me that the testimonials on the website were all fake. Every single one. She was trying to make some extra money by generating business. She came to the wrong awareness page that day.

I am not suggesting that all supplements are made by companies who prey on vulnerable people. Some supplements are good, and some may help things like nerve pain. But, people should check the company out, and ask doctors or pharmacists if they are safe to take, especially when taking other meds. Some herbal supplements can interfere with many meds, so it is always best to be safe.

Something else I came across this week is a clinic using laser therapy. Their website claims that their laser therapy will cure Trigeminal Neuralgia.

  • Proof that their therapy can cure TN is in the testimonials. (Yes, the testimonials which they have possibly made up)
  • They claim their laser is ten times stronger than an other laser. (I'm not sure if this is good or bad)
  • If you have medical insurance, it will not cover laser treatment.
  • If you want to know how much this laser therapy costs, they will not tell you until you have a consultation.
  • They say that you will normally have two thirty minute treatments per day possibly over three weeks. (Surely they should be able to give a price if it is a set length of time for a session)
  • They say it is a cure for TN, yet they say that if it does not work the first time, you can have another round of treatments for half price. (That would be if you have any money left after the first round of treatments)
  • Oh, and you can enjoy the area and stay in a lovely hotel while you are there. (The hotels in the area must love this clinic)

I have seen people ask about this laser therapy....people with TN see that word CURE and think it could change their lives. TN isn't just about pain, it can ruin people's lives. They become desperate for a cure. They use their savings, take out loans, sell their possessions.....they would pay anything for a cure.

Except, this doesn't seem to be curing those people. People have lost thousands of dollars, pinning their hopes on being pain free, but after the treatment, they have the same pain (sometimes worse), and empty bank books.

I don't know enough about laser therapy to know whether or not it can actually help anyone. It may help some people. My husband told me last night that someone he knows had accidentally left his laser torch switch on. It burnt a hole in the wooden table. So I don't think I would like to try laser therapy, especially with the knowledge that their laser is ten times stronger than any other.

I know that there are no real cures out there for Trigeminal Neuralgia. The Facial Pain Research Foundation is trying to find a cure, and we can rest assured that when they do, it will go through the correct channels of being tested etc before it reaches us.

I really hate knowing that people are out their trying to take advantage of people who live with illness and disabilities. Scammers are the lowest of the low, they prey on vulnerable people. They give people hope, they take their money, but they do not cure people.

When we see the word "cure" on an advert or website, we all need to be very cautious. Ask questions, ask doctors, look out for one another.....we need to ensure that people are not taken in by those false claims.


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!!!



Friday, September 27, 2013

An Explanation

I do worry that I am pushing TN down people's throats these days, but I think you'll have gathered that I am kind of passionate about getting awareness for this condition.

There will be an awareness day on the 7th of October.....first ever. After that, I will try to slow down a little bit with the TN posts. (That's not a promise though :) )

The trouble is, TN and other chronic pain are part of my life. Unfortunately, a big part.

Other people write in blogs and on facebook about what they've been doing, places they've been, what they've eaten for dinner, but my life kind of revolves around my pain. I'm not looking for sympathy here......just trying to explain.

I actually have a nice life, I am a happy person, and believe it or not, despite the pain, I consider myself to be pretty lucky.

But, I know how much TN is ignored by the medical profession. I know how difficult it is for people to get a proper diagnosis, and I know how difficult it is for people to get the correct meds to help. And I know that those correct meds don't really help all that well!

So, if you are still following my blog and facebook page, thank you! It means a lot.

Friday, September 20, 2013

A Spoonful of Sugar Helps the Medicine go down....

A couple of days ago I came across an article in the Daily Mail....a health expert has been doing studies and came to the conclusion that sugar is bad for us. Duh! Think we all know it's not the best thing for us, but, in moderation I'm sure it's ok.

But, why are health experts doing studies on things like this?
And, why are newspapers writing about them?

There are countless illnesses and conditions which are forgotten about.

Where are the health experts? Off discussing how bad a mars bar is for you?
Where are the Newspapers? The television and radio news?

There are no statistics about Trigeminal Neuralgia. And no cure.

Our stories are obviously not interesting enough for the media. Stories of children living with this constant pain, stories of people being imprisoned in there homes because of the pain, stories of people losing their jobs, their homes, their partners....their lives.

Why is it that the only people fighting for awareness are the sufferers and carers themselves?

I have written countless letters to newspapers, tv & radio, but get no reply. But after seeing that story about the dangers of sugar, I wrote a letter to the newspaper saying more or less what I said above. I did get a reply saying it was being passed on to the Editor. I don't think for a minute that it will make anyone publish a story about Trigeminal Neuralgia, but at least the letter was read...and who knows.

But if any of you come across stories like that, and you say, that's ridiculous.....they write about that, but don't bother with TN or other serious, but not talked about condition.....write to them. Tell them.

And if anyone is interested in the article about sugar....it's here
And, if you are interested in writing to the Daily Mail with a similar message, you'll find the email address here 
 
 

Thursday, August 22, 2013

TN Awareness

When I was a young girl, I was forever writing to television shows and magazines, normally entering competitions, but never got a reply.

These days, I am forever writing to numerous television shows, newspapers and magazines trying to promote TN awareness.  I still don't get replies. But I will keep writing.

It is so difficult trying to promote something that nobody seems interested in. Even the World Health Organization are not interested in it. However, there is a petition to try to change that. If you haven't heard of the petition, you can sign it here. (It costs no money to sign.) If W.H.O. actually become interested, it could change things.....there could be funding for education, awareness and even research. If you haven't signed it, please do so (even if you don't have TN).

There is so much going on at the moment to do with TN Awareness. There are more and more blogs appearing, so many support and awareness groups on Facebook.

A friend will be doing a Twitter chat about TN with Treatment Diaries on Twitter on the 27th of August at 8pm ET. If you want to read about it, you can check it out here. Being in the UK, I might not manage to watch it live, but hopefully will catch up the following day.

This year, there will be a TN awareness day. For the first time ever.....an International Trigeminal Neuralgia Awareness day on Monday, the 7th of October.

Our own End Trigeminal Neuralgia  awareness page has grown more than we ever thought it would, with just under 2000 followers at the moment. We also have a private support group on facebook which is also growing, and of course, we have our End TN blog and our videos on YouTube  We're on Twitter, Tumblr and Pinterest. We are about supporting people, both sufferers and caregivers, creating awareness, and making information files for people. If you haven't looked before, you should check the Notes section on the awareness page.

We pretty much have social media covered. It's mainstream media which we have a problem with.

What is it that decides if a story is worthy enough to make the news, or a national newspaper? How do people get a story on to a TV show, or even a magazine?

Trigeminal Neuralgia is a horrible, cruel condition. The awareness is essential. If you are reading this, and you have any suggestions how we can get awareness to a wider audience, please let us know.






Wednesday, June 26, 2013

Determination

Every so often something happens in life which pulls you up and gives you determination to keep doing what you have been trying to do. And it makes you try even harder.

A few months ago that happened to me when I met (online) the mother of a teenage boy who has been suffering from Atypical Trigeminal Neuralgia since he was about eight years old. I couldn't believe it. I had read that children can suffer, but when you get to know of one, it's a whole other story. Learning about that boy pushed me at that time. It made our awareness campaign even more important.

A similar thing happened just a couple of days ago, when we met a woman (again online) who thinks her daughter possibly has Trigeminal Neuralgia, or something similar. The bigger problem here is that her daughter has cerebal palsy and is unable to talk. Unable to tell where exactly the pain is. Unable to say just how bad it is. However, she has stopped laughing. She is no longer the happy girl she once was. She struggles to eat. It is too painful to even swallow.

The worst part in this story is that this poor woman was getting no help. It was as though doctors were not interested in helping. This girl had no voice to complain about the pain, and it was as if doctors were thinking that was ok.

THAT IS NOT OK.

This girl has as much right to be free from pain as any other person, whether they be a child or an adult.

The poor woman was at her wit's end trying to make people listen to her. But the people who are supposed to be there to help were ignoring her. It is so wrong.

I haven't been able to get that beautiful girl out of my head.

I can only hope that things improve. They have to.

I have seen a video of her laughing three years ago prior to the start of her facial pain. My wish is to see a new video of her laughing again.

Once again, this story makes our awareness campaign so important. And it is pushing me to try harder.  I am determined that our campaign will do something positive for people with TN.

People may get sick of me asking them to share our posters, watch our videos and read our blog, but I will keep asking.

The only way forward is by awareness.

End TN put out a new blog post today. Please, when you get time, take a look, follow it and share it. Please click here to read End TN's blog.


And if you haven't seen our awareness page on Facebook, click here.



Friday, June 14, 2013

It's All About Awareness

I wish I didn't have pain.

I wish I wasn't so tired.

I wish I didn't have to take so many meds every day.

Ohhh......I could make lots of wishes. But there really is no point.

You have to make the best with what you've got. And I do try to do that. Most of the time anyway.

But there are "those days" when I do feel a wee bit sorry for myself. But I'm sure everyone gets those. Thankfully, they don't last for long and I can get back to normal again.  I hear people say that they wished they could feel normal.....but this is normal for me, with all the pain, the tiredness and all the other bits and pieces. It's what I am used to. Of course, I wish I wasn't, but.......

Isn't it sad that for so many people, this is what "normal" is. So many people live with illnesses and conditions day in and day out with no chance of change. And so many people's conditions are invisible to others. Just like Trigeminal Neuralgia.

facebook.com/endTrigeminalNeuralgia
This week's post on our TN Awareness page on Facebook was about the fact that Trigeminal Neuralgia is invisible. However, on a positive note, there are a lot of awareness groups just now, so it may be invisible, but it is certainly not going to be silent any longer. We want everyone to know about TN.

Our own group now has this week started a TN blog. If you haven't already seen it, please take a look and let us know what you think. Here's the link http://endtn.blogspot.co.uk/

So there you go. You came to read my blog and get a link to another one as well.

A special two for one offer for today only!

Wednesday, May 01, 2013

Guilt

Something that often comes along with living with chronic pain is guilt.

I always trying to stay positive, trying to do what I can with a smile on my face. I still occasionally get a bit down in the dumps. I will not call it depression, because depression is a lot more serious. Depression is completely different. I get a bit down, just like everyone, but I can also pick myself back up.



However, I do often suffer bouts of guilt. I will add now that nobody makes me feel guilty except myself. But those bouts of guilt are more difficult to deal with.



I had to take early retirement when I was 28, two years after getting married. My pain has always ruled both our lives. But it gradually became worse over the years. Now I do less, my husband does more and I do feel guilty.

I used to be able to push myself more, but now I just don’t have the energy. I also don’t think I am physically capable of pushing myself anyway. I put my feet out of my bed in the mornings (at some late hour normally), and feel as though my feet won’t hold up my body. I struggle with everything. Life is hard. Just living is difficult some days. And yes, I feel guilty that I can’t do what I wish I could.



But it isn’t just that.

 It’s other things.....like not phoning someone, not getting around to answering someone’s email or Facebook message. Not reading blogs or Facebook posts that I would normally read. Or getting tired mid-conversation and losing track. Forgetting things. Getting things wrong. Just generally not being able to keep up.


I used to do things. I baked. I painted. Made cards. Made Jewellery.  I wrote. I even ironed occasionally. Now, I think I have become a zombie. I get up, I eat, I sleep. Maybe take a turn or two on a scrabble game, but that's about the height of it.

Sometimes I hate being me. Being me is tiring. And I feel guilty for being me.

I actually feel guilty for being me!


I could spend my life wishing things were different, but they’re not, and they’re not likely to become different.

Living with constant pain uses a lot of energy. And guilt is what I class as negative energy. We, chronic pain sufferers, can’t allow energy to be wasted on something like guilt. We need every single ounce of it just to get through the day.


So time to get rid of the guilt.

Might be easier said than done though.....



Wednesday, January 30, 2013

Good Pain

I often say that sometimes I get "good pain" and people look at me strangely. How can pain ever be good?

Well, I believe it can.

Certain things can cause me to have more pain than usual. Like going out in the cold. Like brushing my teeth. Like eating some foods. Obviously those things don't give good pain. Far from it.

Talking causes pain sometimes. Singing causes pain (not just for me!) And laughing causes pain. Those things cause what I call "good pain" Especially the laughing. I call it good pain because I did enjoy the activity at the time, and I knew at the time that I would end up being more painful, but sometimes the pain is just worth it.
Yesterday we went out visiting the family for the first time this year. One of my nieces is staying with my Dad for a couple of weeks with her little girl. This little girl is four and an absolute bundle of fun. She just doesn't stop. I wish I had a tiny bit of her energy. She had us laughing non-stop and we had such a good day. So I laughed non-stop, and yes, I felt the pain a lot then and a lot today, but it was so worth it. Definitely "good pain".

So if someone ever tells they get good pain, please don't look at them strangely. They've possibly discovered that sometimes pain is worth it.




Friday, January 04, 2013

I am a bit slow off the mark here, but I want to wish all of you a very happy new year. 
 I hope you all managed to enjoy the Christmas and New Year celebrations.

The week between Christmas and New Year, proved to be a crazy one for me. I had to increase my tegretol about three weeks before and fortunately, I had no adverse effects.

Obviously they decided to build up in my system for three weeks and then they hit me. And they really did hit me.


I had been feeling kind of “off” all day. This in itself was nothing unusual. I get days like this often. I call them my “side effect” days. Just a general horrible feeling which I find hard to describe and I put them down to the meds I’m on.

However, I went to bed early, slept on and off, then got up through the night to go to the loo. I felt a bit staggery when I got out of bed....again nothing that unusual. However, the staggering went to full scale balance loss. The place was spinning and I think I bounced off of everything in sight, eventually catching my leg on something which led me to fall into a heap on the floor.


Ian (yet again, poor man!) came running and picked me up and got me into a chair. He had thought that I had done my usual and tripped over something. But when I tried to explain that I was so dizzy, I found my voice had gone strange too.
 

When I did get back to bed, I think I lay their so rigidly, to try to stop the spinning, but I never slept a wink. Nor did Ian. I have to say I didn’t even think about the increase in my meds. I was scared.....I actually thought there was something seriously wrong with me. It was Ian who suggested that it may be a side effect and sure enough, on checking, it is listed there for higher doses. So dose back down, pain back up. Eventually, no more dizziness, but a few bruises to show for it all.



Oh, these meds.....so horrible having to take them. But I don’t know how I’d cope without without them.


Anyway I hope 2013 is better to everyone.




Monday, December 24, 2012

Merry Christmas



To all of you who read my blog, I am always very grateful.  I have said to some people that my blog is almost like therapy for me. It is the place where I am totally honest about my pain and can have a right good old moan and, believe me, it helps. So a big thank you to everyone for taking the time to read my ramblings.

I hope that you and your families have a lovely Christmas. And for any of you or those with friends or family who suffer from  Trigeminal Neuralgia or any other form of pain, I truly hope that you or they have as pain free a Christmas as is possible.

Christmas isn't always the happiest day of the year. Apart from all the rushing and wrapping, cooking and cleaning, it is often a time when people remember the loved ones who are sadly no longer with us. Hopefully we can remember those people and let their memories make us smile tomorrow. Not just tomorrow. Hopefully their memories can make us smile always.

Love to everyone.

 


Tuesday, December 18, 2012

Thinking of Others

Trigeminal Neuralgia is a horrible disease. The pain is bad. Really bad. However, there are always things in life worse than it.

The other day, we heard of the horrendous shooting in the school in Connecticut. Constantly we hear of tragedies, whether they be from a war torn country, or from a horrific road accident in our own country. Whether there is one life lost or ten, it is still a tragedy.


People say that it is worse when things like this happen near Christmas. But it isn’t worse......if it were worse, it would imply that any other time of year would be better. But it would never be better for tragedies like these.


Never.

We, as a human race are strong. Resilient. We bounce back and we can do it time after time. 

It is just so sad that we have to bounce back from such tragedies.


Lately I have done a lot of complaining about my face. But then I think about what some people are going through right now, including my own sister having lost her daughter earlier in the year, and I realise that I’ve got life pretty easy.





Monday, November 26, 2012

My Invisible Friend

It struck me this morning (literally, right across my cheekbone), that TN is like having an invisible friend. Except it's not really much of a friend.......more like an enemy.

It is there with me all the time. Wakes up with me. Goes to sleep with me. It comes with me to clean my teeth and absolutely hates me doing that and tells me so in no uncertain terms.

Actually, it's with me all the time. I even feed it with it's own special diet. Oh, it just loves those tegretol tablets. Cymbalta aren't so bad either. The amitriptyline.....well I don't think it's so keen on them. But I force them down anyway, despite the choking. My friend must cost the NHS a fortune.

I'm really getting a wee bit fed up of having this invisible friend. I try to be nice to it. I actually try my best to look after it. I don't treat it badly. So I don't know why it's being so nasty to me.

I am not wishing it to go visit anyone else, but I would like it to go away somewhere far away and not come back.

Maybe the next time they send an aircraft up on a mission to investigate Mars, they could take everyone's TN with them.....and leave it there.






Monday, November 19, 2012

Pain??? What pain????

I try hard to ignore it. I have had a lot of practice over the years and I will never stop trying.

Ok, so I don’t ignore it 100% It’s not possible. I am on a lot of medication for it, so obviously I have had to come out and admit to it time and time again, rather than suffer in silence.

But I have always tried my hardest not to talk too much about the pain. I may have had the odd day here and there when I have slipped up and did have a right good old moan, but I really have tried not to. And I have my reasons.

Well, just one reason actually. Talking about it means thinking about it. And thinking about it means it brings me down. And I don't want to be down.

I suppose it’s like watching surgery on the television. You sit watching, squirming as the knife makes its first cut. It’s easier just to change channels or go make a cup of tea until that part is over. The surgery still took place, but you were able to avoid being affected by it.


If I was to explain, really explain, what my pain is like every day, it would bring me down. It is easier for me to ‘change the channel’ and avoid that. My pain still takes place, I still have to live with it, but this way I don’t get brought down by it.

Anyone who reads my blog must think, “she never stops moaning about the pain she’s in!” Yes......I do.....but my blog is different. You see my blog is my little release valve. The place where I allow myself to moan. My place to moan and in moaning about it, I hopefully help a little bit in raising awareness of Trigeminal Neuralgia. So few people know about this disease. It needs more knowledge. More understanding. More research. More funding.

And today my TN really hurts. Big time. Today I feel like screaming and shouting about this stupid TN, so I will moan about it.

I will moan about feeling as though I have been punched in the face and head by Mike Tyson. I will moan about feeling as though the dentist from Hell is trying to pull some teeth with pliers. I will moan about feeling battered and bruised even although there is not a mark to show for it. I will moan about this horrible relentless pain.

I could also throw in a few extra moans about aches and pains elsewhere, but I won’t bother. I think that’s more than enough moaning for one day.

So.....that’s my moaning session over. That means I am back to being me.....I will not think about it any more, because I cannot let it get me down.

I cannot, and I will not let it get me down.


Monday, November 05, 2012

Looks Can Be Deceiving



For a few days last week, I was certain that every time I looked in the mirror I would see a different face looking back at me. A face all beaten and bruised, with an axe slicing through my head. But it wasn't......it was just the same old me.

Today I expect to see a knitting needle poking into my right eye......but that's not the case. That's how it feels, but there is nothing to show.

But that's Trigeminal Neuralgia for you. One of many Invisible Illnesses. With pain like this, you would expect to have something to show for it. But there is nothing......not a single mark. This kind of pain should be written all over your face for the world to see, but it's not. It's hidden. Invisible.

I have been doing a bit better - still painful, just more bearable.....but then days like these come along and jolt me back to reality.

Oh well, I guess that's life with TN.

Now it's time for wee snooze because that axe is coming back. Maybe it will scare away the knitting needle!





Monday, October 22, 2012

Birthday Blog


Well, I just realised that it was on the 20th of October last year when I started my ramblings here on my blog. I missed its birthday by two days!

It's actually quite hard to believe that a whole year has passed already. It's been a year of sharing so many aspects of my life. It's been a year of me trying to explain about life with TN, even though that's meant moaning about my pain almost constantly, something which I actually hate to do. But it's also been a year when I've shared a bit of laughter, and, especially recently, some sadness and tears. I have also had the pleasure of getting to know some people who have read my blog. Some are fellow bloggers, some are also sufferers of TN or other painful conditions. I have enjoyed reading the comments people leave, and I guess I would be lying if I didn't admit that I do enjoy that feeling of knowing that people have actually been reading what I have written.

I have learned quite a lot over the last twelve months.....mainly that it is ok for me to moan and talk about my pain. I tended not to do that in the past. I tended to keep it in. But in actual fact, it has almost been like a relief getting it out. Kind of therapeutic, I suppose.

Yes, my life can be pretty horrible sometimes due to the pain, but, it is also pretty good too. So I can moan, but I can also laugh. Sometimes life can seem like a bit of an uphill struggle. But I always manage to get to the top of that hill. There may be another hill ahead, but I know I will get to the top of that one too. The good thing about it being a struggle is that it is always such a relief to get to the top. Now, imagine if life was all just plain sailing.........would there be the same enjoyment, the same sense of relief and achievement in reaching a destination?

So I will continue trying to smile my way through my life with all its hurdles, and I will contintue to ramble on about it here. I hope you will continue on that journey with me.....



Monday, July 23, 2012

Symptom or Side Effect?

I’ve been wanting to write this post for a while. It is something which I am sure most people like myself will recognize. We take so many strong drugs that it becomes more and more difficult to distinguish between the two - symptom or side effect.

We develop symptoms and nobody knows if it is something wrong with us, or if they are simply side effects of the drugs.

I think we all get used to side effects like a bit of weight gain, maybe some nausea, constipation, etc.....but if the drugs are helping the pain, it’s maybe worth putting up with those.


But there are also other side effects like constant tiredness, ringing in the ears, heart palpitations, that feeling of fuzziness in the brain, losing balance, the bad memory........the list could go on and on. Again, if the pain is being helped, sometimes we would rather put up with those too.

Those are some of my side effects......most people on these drugs suffer them too.

The strange thing for me is that if I am going through a better spell, I don’t suffer from the side effects as much as I do when my face is really bad. But when my face is playing up, so do the side effects. Strange?? I think it is.

This past week, I wasn’t having a good week with my face, and as usual, all those side effects seemed to flare up too. But my knees were also painful, along with my legs, ankles and even feet. Some mornings I have got up out of bed and felt that my feet couldn’t take my weight. (Maybe they don’t like the extra weight I have put on!)


Throughout my life, I have suffered from painful knees and other joint pains every so often. No cause found for it, but very painful. They eventually settle down again. But I think on top of everything else, it got me down a bit last week. Joint pains could possibly be yet another side-effect? The tablets get the blame for everything. But who knows....possibly I am just falling to pieces.


Actually, falling to pieces wouldn’t really surprise me as I have fallen so often recently.  I just seem to fall for no reason. Trip over my own feet! I think Ian is thinking about wrapping me in bubble-wrap before I get out of bed in the morning. I try to laugh it off and blame the tablets making me unsteady.

But it gets more and more difficult to laugh it off some days.



Wednesday, July 11, 2012

TN....The Suicide Disease

Something I have always hated about Trigeminal Neuralgia (other than the pain) is the nickname it has acquired over the years of “The Suicide Disease”.

I always think that it is such a horrible thing for a patient to read when they are newly diagnosed and trying to find more information. It also must be awful for relatives or friends to read. It gives a feeling of hopelessness, a feeling of living the rest of their lives in fear.

It sounds so over-dramatic. But is it?

People do become dragged down by the pain, by the meds and by the life they have to lead due to Trigeminal Neuralgia.

The pain from Trigeminal Neuralgia is supposedly the “worst pain known to mankind”. Many years ago, there were no treatments available, therefore, I am sure that suicide did seem like the only option to sufferers. But nowadays, we do have medications and other treatments, although there is still no perfect solution. The meds are very much trial and error,  and very often, do not give 100% pain relief. And of course, the meds bring a whole bunch of side effects, some of which can be very serious. There are surgical options, but unfortunately, they don’t work for everybody either.

I see it day in and day out on forums - people say that they feel they can’t carry on living like this. They feel so alone with their problem. Some people have no support, no family or friends who are prepared to even try to understand. Many people cannot cope with how the pain alters their lifestyle. Many people become so depressed as they feel that they will never find a way out of this pain filled life. 


I really wish the nickname didn't exist. I think it does nothing but bring fear and place a bigger burden on the shoulders of sufferers and their families.

Still so few people know about trigeminal neuralgia and I think that’s where the problem lies. Even most doctors struggle to understand the condition. Patients with TN are desperate for a time when people do not screw up their face wondering why on earth we complain so much about “a bit of toothache”, why we don’t just go to the dentist, or suggest we take some paracetamol for the headache we “always seem to have”, or even suggest we just get out for some fresh air.

If more people know about the disease, there will be more understanding. And hopefully more understanding means more funding into research. More research hopefully means a cure for this horrible condition.

The TNA,  the Trigeminal Neuralgia Association in the UK, tries to ensure patients get the correct information about meds and treatment, and tries to offer some kind of hope. It tries to raise awareness and it has a support network for patients. There are many forums and websites online doing similar. Through my blog, I am trying to raise awareness of the condition. Other people I know, also write blogs about TN. Some of them are patients, some are the carers. I have listed a few below :

  • Gilly's blog - Gilly's husband developed TN and went through surgery to try to help. I think this is such an important blog, as it shows the side of a loved one, looking on, trying to help, sometimes feeling helpless.
  • Lena's blog - Lena, not only has TN, but other painful conditions which, like TN, have little understanding. 
  • Carol's blog - a lady who has endured TN for over thirty years of suffering, including surgery which has gone wrong. 

In our own small way, we are trying to raise awareness and make people understand, not just about trigeminal neuralgia, but about what it is like to live with the condition.

Maybe one day, there will be more understanding about trigeminal neuralgia.

Maybe one day there will be something better out there which can help this pain.

As sufferers, we need to live in hope of there being something better.

Since you are reading this, then I know that are either a sufferer, or you do already try to understand what it is like to have trigeminal neuralgia. Perhaps you could share what you know with someone who doesn’t, or point them in the direction of the TNA, or even share the links to our blogs. Click the logos below the post to share it, then you will be helping to raise awareness too. Thank you.....