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

Wednesday, May 01, 2013

Guilt

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

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



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



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

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



But it isn’t just that.

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


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

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

I actually feel guilty for being me!


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

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


So time to get rid of the guilt.

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



Wednesday, January 30, 2013

Good Pain

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

Well, I believe it can.

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

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

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




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



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.





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 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.




Sunday, November 27, 2011

Dem bones, dem bones.....

One of those days yesterday. My face was bad. My ribs were bad.  I don't think I was out of my bed too much the whole day.

I have had the ultrasound scan for the rib pain, and it came back all clear. So that's at least one bit of good news.

So why all this pain? It feels like my ribs are too tight for my body....like they are squashing me. My GP thinks (and I agree) that the rib pain is related to my back.

This scoliosis has a lot to answer for! It wouldn't surprise me if it also has something to do with the Trigeminal Neuralgia. I did ask the neurologist if that could be the case but he categorically said no, there was no connection between the head and the back. Hmmm.....I think I categorically disagree with that. I seem to remember a song called Dem Bones, Dem Bones. It went something like this :-

The toe bone connected to the heel bone,
The heel bone connected to the foot bone,
The foot bone connected to the leg bone,
The leg bone connected to the knee bone,
The knee bone connected to the thigh bone,
The thigh bone connected to the back bone,
The back bone connected to the neck bone,
The neck bone connected to the head bone,

Okay, I know that human anatomy is a little bit more intricate than just a bunch of bones pinned together with some nails and screws, but surely there is a connection. Surely.....

Friday, October 21, 2011

Up late, sore face

So.......here I am, 40 minutes after midnight and I am still messing around with this blog.

Actually, I would have gone off to bed a while ago, but I am sitting here hoping that my tablets kick in for my trigeminal neuralgia. Tri what? That's the normal response.

Trigeminal Neuralgia

Not nice. Not fair. And not wanting to write about it tonight, so I won't. I'll save that little gem for another day.

All I'll say just now is "AAAAARRRRGGGGHHHHHH......I am sick to the back teeth of living with chronic pain!" Whoever first used that saying must have had trigeminal neuralgia. Right now my back teeth really hurt, my front teeth really hurt, my head really hurts, my face really hurts.

Not much fun....but that's life for some people. But you know what....I still smile. Sometimes it hurts, but I still smile and I hope I never stop smiling.

Now I will get off to bed and hopefully sleep.