Showing posts with label face pain. Show all posts
Showing posts with label face pain. Show all posts

Friday, February 21, 2014

Coping Mechanisms

When living with chronic pain, life can by tiring, frightening and frustrating.

A chronic pain patient has to learn ways of coping. It can become an emotional battleground, fighting against feelings of fear, anxiety, depression and even guilt. They have to find ways of relaxing and trying to clear their mind from the pain which can so easily take over their life. They have to find a way of keeping their identity so they do not become lost to their pain. Their pain must only be part of them - it cannot be allowed to take over.

The same applies for people living with someone else's chronic pain. Whether they are the patient's partner, parent, child or friend, their life can also be tiring, frightening and frustrating. In some ways, perhaps more so. They can get tired of watching the person they love struggle, frightened of the future, frightened of never seeing that person be free of pain. The frustration and guilt at times must be overwhelming, because they can do little, or sometimes nothing, to make that person's life easier.  It can be soul destroying for someone seeing a loved one in constant pain.

They also have to find ways of coping and relaxing so that they can also clear their mind of the pain. It is possibly even more important that they do this, so that they can continue to support the person they love.

Living with pain is certainly not easy....but living with someone else's pain is possibly even more difficult.





I have always been lucky. I think there is something in my genes which makes me just accept my pain for what it is, and cope with it as best I can. Maybe because I have grown up with pain, I simply don't know anything different, so I can just accept it more easily than some people who have had a normal life, then suddenly develop a chronic illness or condition. They then have a huge adjustment to make and have to learn to deal with that along with physical and emotional problems associated with their condition.

When I look at my life, I try not to focus on the negative parts. That would drag me down....and I can't let that happen. In fact, I think I try to take the negatives and turn them into something positive. Most of my blog posts are about my face pain, which is an extremely negative aspect of my life, so it could be said that I focus on that too much.....but my reason for focussing on that is to bring much needed awareness about Trigeminal Neuralgia. This helps myself as well as other people with the condition. That is my way of turning something very negative into something positive.

So my pain may be negative, but if I can take something positive from it, it helps me to deal with it.

I also look around me every day and find reasons to smile, and there are always plenty of reasons. I smile because I love where I live. I smile because I love that crazy guy I am married to. I smile because my family mean so much to me. I smile because my eight year old fox-red labrador still tries to climb up beside me for a cuddle. I smile when the cat talks to me (she does....she really does!)

I smile because I have started drawing again. I smiled because Ian made a pot of chicken soup this afternoon and it is delicious. There was a glimpse of sunshine and blue sky while I was out shopping...that made me smile thinking that Spring is somewhere just around the corner. Then on the way home, I saw the snow on the hills......that made me smile too because they just look beautiful covered in snow.

There is always something to smile about.

My life can be tiring, frightening and frustrating, but finding things to smile about, I think, is my coping mechanism. That is what helps get me through life.

Everybody living with pain (whether their own, or someone else's) has to find their own coping mechanism.

Finding it is the hard part, but once found, life can become so much easier.



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!

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, 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, 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.



Monday, May 07, 2012

Food Glorious Food

A few days ago, my sister asked me if I wanted to join her for lunch today. She was going to be spending an afternoon at a health spa near me with a group of friends, and before it, they were all having lunch together at a restaurant close by. She asked if I wanted to join them there for lunch.

I never really know how I am going to be feeling from one day to the next, and I have come to really hate making plans in advance. Besides, I kind of panicked at the thought of going for lunch with eight people, most of whom I don’t know. And, I have to eat so slowly because of my face, I would probably still have been eating when they were all having to leave for their relaxing afternoon at the spa. I don’t know what would be worse - having lunch with people I don’t know, or being such a slow coach and sitting in a restaurant finishing my lunch myself. So I opted out. I did however enjoy a plate of Ian’s homemade minestrone soup, which is delicious, so don’t go feeling sorry for me.

Eating, when you suffer from trigeminal neuralgia can often become a huge problem. Even drinking can be difficult. Nothing too hot, nothing too cold, food can’t be too hard, too crunchy, too chewy. Some things are just a definite no.
This isn't Ian's ministrone by the way. I have to say that I used
the photo from a recipe on http://www.twopeasandtheirpod.com

I love soup and I practically survive on it. I’m not complaining - I really do love soup. Ian makes most of our soup, and he does make a really good pot of soup, so we always have containers of it in the freezer. But I do actually enjoy the trigeminal neuralgia diet, also known as the ‘soft food diet’. Soup, mashed potatoes, rice pudding, custard etc.

Of course, I do miss some things, especially ice-cream, but that’s just one of those things which I have come to accept. Eating ice cream would be like me going out in a freezing cold wind with no scarf covering my face......in other words, a bit stupid. So no point in crying over what I can’t have.

I suppose it’s just like life really.

Sometimes we waste too much time yearning for the things we don’t or can't have, instead of appreciating the things that we do have. So every time we wish for something, maybe we should take a step back and just look around at what we do have instead.


Wednesday, May 02, 2012

Fairies Have Limits.....But I Don't


Anyone who is my friend on Facebook would have known that over the weekend my pain had been bad again. I did something I don’t normally do, and I actually broadcast it as my facebook status. Well, not quite in so many words, but I’m sure they figured it out.

What I wrote was this -

Joke for the day



A fairy suddenly appeared in front of three women waving her magic wand. "I have three wishes," she said, "you can each have one."

The first woman quickly said that she wished she could have lots of money. Immediately, her mobile phone rang with a text telling her she had all six numbers in the lottery.

The second woman said she wanted to find a man who would love her forever. Instantly, a man appeared with a dozen red roses professing his undying love for her.

The third woman was in so much pain that she could barely talk. "Money doesn't mean anything to me. I already have a husband who loves me. But I live with Trigeminal Neuralgia, just like thousands of other people world wide. So my wish is that you could take away this disease from everyone." The fairy waved her wand. Nothing happened. She tried again. Still nothing. She called fairy headquarters to ask what was wrong. They told her that the third wish had been just too much to expect. Even fairies have their limits.


The moral of this is that you can make a joke out of a lot of things in life. But living with a disease like Trigeminal Neuralgia is no joke and never will be a joke.


Thankfully, I did perk up a bit the next day and I found my smile again. I hate it when I lose that. Having the pain is bad enough, but when I lose my smile too, that’s a whole other story.

So you will be pleased to know that the smile is firmly planted on my face and I am really trying to keep it there. Life definitely seems better when you smile.

Fairies may have their limits, but that doesn't mean that I need to have limits as well. In fact, I think I need to try to push my limits sometimes.

Yesterday, I tried to do that.

I actually drove to town to collect a prescription for Ian who has a chest infection. This was the first time that I have driven for weeks. If my pain is at its worst, I just wouldn’t drive. And some days, the effect of my tablets make me feel as though my head is full of cotton wool, so on these days, I definitely wouldn’t drive. But yesterday, my head felt clearer, so I knew I would manage the twenty minute journey.

I picked up Ian’s prescription, then nipped to the supermarket for a few things. Well, trust me, I landed there just as the local primary schools were coming out. All the Mums had also decided to nip to the supermarket for a few things with all their kids in tow. The noise was crazy. I suffer from constant ringing in my ears. Like fuzzy electricity, buzzing away inside my head all the time. I don’t know if it’s just another one of my ‘things’, or if it’s just another side effect of my medication. But all the noise inside my head plus all the noise of squealing children in the supermarket nearly had me going demented. By the time I got to the cereal aisle, I was ready to scream. So I quickly paid for my shopping, and headed home.

Of course, by the time I arrived home, I was shattered and went straight to bed for a sleep. But I was pleased with myself that I had actually gone out and done something for a change.


I had pushed my limits a little bit.

I know a twenty minute journey to the shops means nothing to most people, but for me, that was quite a big deal. My face is worse today from the cold yesterday, even though I was dressed as if it was the middle of January and not the first of May. That cold was enough to make my face worse. But I am still glad that I went out. I achieved something.  I pushed my limits and it made me feel good.




Tuesday, March 13, 2012

Word Of The Day - JINX


And it wasn't used in Scrabble.

No, quite simply, it's me. I am a jinx.

Well, I had a few better days since my last med increase. My GP increased my Tegretol, and prescribed it in the slow release form. After a couple of weeks, I felt a difference. In fact, I was starting to feel like I could get my life back. I had less pain in my face and it felt so good. I even managed to do some drawing a few days ago. The pain hadn't gone, I don't expect it ever to do that, but it was better.

My only problem......I actually had the audacity to tell people.

I wanted to share it. I wanted to share it with people who care about me. I wanted to share it with people with the same problem, in the hope that maybe my combination of meds could help them.

Of course, after telling people, the pain has come back with a vengeance.

I suppose it's just like saying that we are having lovely weather, then we get rain the next day.

I just hope that this little nasty spell is just a little glitch, and I'll get my good days back. Please.....I did enjoy them. I didn't abuse it. I didn't go out in the cold or anything like that. I didn't eat ice-cream.

But, hey, it was nice while it lasted!




It was good, a few days with a bit less pain
But maybe I should have used my brain
But instead, I was happy, and wanted to share
So I told some people, the ones who care
It's happened before, so I should know better
But, no....I had to spell it out, letter by letter
Like I said, I was happy, and I wanted to share
Then it comes back like a punishment....it's so unfair!
I shouldn't have said anything, that's what hubby thinks
And I have to agree.......I am a JINX
E.S.


                 

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.........

Thursday, December 01, 2011

Trigeminal Neuralgia Association

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

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

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

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

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

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

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.