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

Saturday, April 02, 2016

Your Life, Your Choice

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

It's up to us to find them.

#YourLifeYourChoice





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, 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.



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.



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.....



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.

 


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.....



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



Saturday, September 01, 2012

Talk To The Animals

Having a bit of an off day today. One of those bad side effect days. The people who take all those meds will understand what that means. But I am trying hard to ignore it.

I’ve actually had a poorly husband for the last couple of weeks as he is recovering from an operation. This has meant that I’ve looked after him more than the other way around, as is normally the case. Although, he possibly makes a better job of looking after me.

It  has also meant that I have had to feed the hens. And they must like me, as they are giving me plenty of eggs every day. My feathered friends are at the door waiting for me every evening now. And I swear one of them is saying “Hello” to me. Ok, so maybe she doesn’t actually say hello, but I say hello to them, then one of them makes a noise in return which sounds just like my hello.


So now you all think I have finally flipped. I have lost the plot. Gone crazy. “The meds have finally got to her........”

Actually, no, I think I went crazy many years ago. Think it was when I was young. If a cat came into our garden, I would maiow to it, and it would maiow back to me. I didn’t have a clue what it was saying, but it seemed to understand me.


Of course, I have a cat of my own now, and yes, she also talks to me. But she doesn’t just maiow. She has several words in her vocabulary. “Hello” and “Thank you” are just a couple of them. And I’m sure she uses a few expletives when I let her in if she has been outside in the rain.

She also tells me if she has caught a mouse or some other delicacy. I can hear her talking about it a mile off. She always brings her food home to eat outside the door. Actually, I think she would really like to bring it in to the house as a gift for me, but I’m not too keen on mice.


I can hear her coming running up to the house making all sorts of strange noises. People have asked me how I know that noise means she is bringing something home to eat. I reply that she sounds as though she is talking with her mouth full.


So there you have it.....hens that say hello, a cat that talks and just don’t let me get started on what the dog is capable of doing!!





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.



Friday, June 29, 2012

 The Fight 
What’s this thing doing to my life?
Constantly attacked by a butcher’s knife
The handle hammering the side of my head
Feels like it must be made of lead
The blade is in my teeth slicing up to my eye
I have a question. Just one. “WHY?”
Just seems like a never ending hill
And I climb it. Popping pill after pill
I occasionally get somewhere near the top
Then, action begins. A sign appears. “STOP!”
The knives come out and they drag me back
Way down through that worn out track
I plead with them to leave me alone
But no. They stay. Silently, I groan

Pain has taken so much from me
One day, I hope, it will set me free
But until it does, I must keep up this fight
Day after day; night after night
Because I am Liz
The one who never loses the place
The one who always has a smile on her face
                                                                                E.S.





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.



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.


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!






Tuesday, April 10, 2012

My Dad

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


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

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

He always understands.

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

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



EDIT

I wanted to add this photo.

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