Showing posts with label coping. Show all posts
Showing posts with label coping. 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.



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.



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!

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, 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.....



Thursday, October 11, 2012


 Sometimes there are just no words.......


We travelled about 400 miles down south for my niece’s funeral on the 28th of September. It was a beautiful celebration of her life and I was able to spend some special time with my sister. There weren’t a lot of words between the two of us, because there really aren’t any at a time like this, but there were lots of tears and lots of hugging.

Hugs just seem perfect when there are no words.

I’ve been trying to get back into writing my blog since then, but then I think, ‘how can I start writing about my life?’ Everything seems so unimportant in life in comparison to what my family has gone through recently. Everything seems so trivial in comparison to my sister losing her 27 year old, lovely, crazy, beautiful daughter. 

But all the trivial things do still go on. Even for my sister.


People have said to me in the past that they don’t know how I cope living with chronic pain. I have no option. I just have to get on with it. Sometimes people are strong because they have to be, sometimes there are just no options. Being strong and coping are the only options available.

Now I hear the question being asked about my sister. But she will cope. She is strong. She has to be. And I am so so proud of her.

I only wish there weren’t so many miles between us.

We may be many miles apart
But we will always be close at heart

As I hold you in my thoughts each day
Wishing I could help in some small way
To hold your hand to help you through
And show how much I think of you
If only I could take away the pain

The way the sun can dry the rain

If only words could take away
The pain you feel every day



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.....


Friday, May 25, 2012

In Sickness and In Health

I remember standing at the altar saying our vows when we got married. Ian always tries to make me laugh, and even then he didn't miss the opportunity. The line, 'in sickness, in health', he gave me a look which had me chuckling a wee bit. I had warned him not to do that. That was my biggest fear...standing at the front of the church, giggling uncontrollably and unable to speak. Somehow, I regained composure and I carried on.

But that wee bit of laughter is a sign of how we've lived ever since, even throughout health issues. Throughout the pain, throughout the hardly able to move days, Ian has always managed to make me laugh. Laughing can be bad when you have trigeminal neuralgia, but that's a breeze compared to laughing when you have a broken rib!

It's probably important to stress that Ian isn't actually laughing at me, but laughing with me. And a bit of laughter while I am in a lot of pain is so good for my mind and soul. It makes life a wee bit nicer. And if he has succeeded in making me laugh, I am sure it has made his life a wee bit nicer too.

I always say that my pain not only affects me, but my husband too. How true this is. For every person who lives with any kind of chronic illness, there is most likely at least one person living with it along with them.



Living with a chronic health condition

It's not easy.....but it's not easy for the partner either

It's frightening......but it's frightening for the partner too

It's stressful.....but it's also stressful for the partner

It affects so many aspects of life.....for their partner too

It affects social life, work life, home life....for both


I don't know where I would be without Ian. He is the one who keeps me strong. He looks after me when I am needing looked after. He is the one who picks me up when I am down. And yes, he picks me up when I fall down! He is my carer.....but he still my husband.

I don't know how he copes. He sees me when my pain is at its worst. He watches me count out my meds every day, sometimes he has to get them for me in the middle of the night. He takes me to countless doctor and hospital appointments. He sees the way the meds affect me some days.......I'm sure I must drive him crazy at times. I drive myself crazy. Like when I sleep most of the day. Like when the words won't come. Like when the memory doesn't remember. Like when I just do plain silly things sometimes. Like when I tripped over my own big feet and nearly landed in the chicken plucker! (Rest assured that I am bruised, but unplucked!)

But he just raises his eyebrows and shakes his head and laughs it off. I'm not trying to say he's a saint. He's not.....but neither am I. But I am extremely lucky. Somehow, we cope with it all together.

Perhaps, along with the meds which we are dished out, maybe doctors should think about our partners too. I know that there is no magic pill to make life easier, just like there is no magic pill to take away the TN. But maybe if partners knew that the doctor was looking out for them too, it could maybe help a little. Sometimes a little care for the carer is in order to make sure they are coping.


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.



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, April 24, 2012



Picture it........the sun is shining, you are happy, but you cannot ignore that big grey cloud threatening to ruin the day.


That’s what chronic pain is like. Even on a good day, you live with a fear that it could all change suddenly.

That is what trigeminal neuralgia and other chronic illnesses do to people. We either seem to live in pain, or live in fear of being in pain.

Recently, I have had a few reasonably good days. The pain never leaves, but it is not nearly so bad. But, as I am going about the house singing my heart out, at the back of my mind, there is a niggling fear that it could just change at any minute.

Today I am trying to tell myself to forget that fear. Just enjoy it. I reckon I cope with the bad days pretty well, but when I get a good one, it’s silly to ruin it because of a niggling fear that it will turn bad.

So I will keep singing my heart out. I will sing as loudly as I can. Because that’s what I do when I’m happy.

The fact that I can’t sing a note in tune doesn’t make a jot of difference.

Well, maybe it does to Ian....

Yes, poor Ian.... I always sing when I am happy.  Sometimes I even sing when I am in pain. But on a day like today, I sing. I sing non-stop. I sing loudly. Actually, I probably sound as though I am in pain! But I don’t care......I like to sing. I even sing with a silly voice sometimes. I even sing with silly words because I don’t know the real words. I just like to sing.

Okay, truth be told, it's not poor Ian at all. He actually joins in with me. So maybe he really does enjoy my singing. Either that or he joins in to drown me out.

Probably just as well we live at the end of a valley with no neighbours!






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.





Wednesday, March 28, 2012

Patient or Carer???


Not been doing too good. Again.......yes, again!!!!!

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

I ended up taking diazepam which helped me get to sleep. I woke up through the night with the pain, but thankfully the following day, it did start to calm down.

By Tuesday, when  I was feeling a good bit better, I had an appointment to see my GP.

Oh, 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 has the patience of a Saint and 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, that husband of mine.......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 loving, caring 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.

So, you see, the chronic pain patient doesn't get it easy. But I believe that their carer, if it is a loved one, doesn't get it too easy either.



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.........