Monday, December 24, 2012

Merry Christmas



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

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

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

Love to everyone.

 


Tuesday, December 18, 2012

Thinking of Others

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

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


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


Never.

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

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


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





Monday, November 26, 2012

My Invisible Friend

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

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

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

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

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

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






Monday, November 19, 2012

Pain??? What pain????

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

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

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

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

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


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

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

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

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

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

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

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


Monday, November 05, 2012

Looks Can Be Deceiving



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

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

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

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

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

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





Monday, October 22, 2012

Birthday Blog


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

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

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

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

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



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



Sunday, September 16, 2012

Tomorrow

Over the last ten days, all of our lives have changed so much. The loss of a loved one is so difficult, but when that loved one is young, it just seems so much worse. But it is frightening how quickly life can change.

Thankfully, we had nothing left unsaid, but I think due to the suddenness, it has made me think a lot. We can't always take life for granted. Sorry if it seems depressing......

 ❀❀❀

Tomorrow

Take a moment and think of this
There may be no tomorrow
But today something could be done
Meaning much less sorrow

Don’t let things be left unsaid
Don’t let distance grow
Sometimes all it takes is a call
Just to say hello

Take a minute and do those things
To save yourself some sorrow
Do it now. Do it today
For there may be no tomorrow
E.S.


Monday, September 10, 2012

Sadness

Back in February, I wrote a blog post about how lucky I was to have nieces and nephews. About how much I love them. About how much they make me laugh. I talked mainly about one niece in particular. I called her my crazy niece.........

crazy, but nice crazy.

Today I can’t put into words what I feel. Sadness just doesn’t cover it. We no longer have my beautiful, loving, crazy niece.


I was Heather's Godmother and from a young age, she called me her Fairy Godmother. I called her my Fairy Goddaughter as well as my crazy niece. I loved her so, so much and I just can’t get my head around the fact that I will never see her again.


This pain is worse than any physical pain I could ever suffer.


My poor sister and my other nieces. My pain is bad but I can’t begin to imagine what their pain must be like.


All we have now are memories. And she gave us so many beautiful memories. I can see her face and hear her voice. I can even hear her singing those Abba songs with that voice of hers. I can hear her laugh. I hope those memories never fade. She was such good fun and her heart was just so full of love. She was a special girl.

When I wrote that blog post in February, Heather read it, then wrote a comment under it in the form of a poem. I will treasure those words that she wrote. When I read it at the time, it made me laugh and cry at the same time. Today, I read it and I just cried.

Part of it I think is appropriate for the whole family right now. She said :-

How lucky I am to have a family like you,
my mum and her sisters are the best
as mine are too. 

We were the lucky ones Heather.  We were so, so lucky to have you in our lives. We all love you and will miss you forever. 



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, August 27, 2012

Listen To The Rain

Just listen........well, that’s if it’s raining where you live, and of course, if you can hear it.

Being so blessed to be living in one of the most beautiful countries in the world, means one thing - you need to put up with a fair amount of rain in order to keep it looking beautiful.

Just one of those things in life. You must always be prepared for rain. You need to nip to the shops, you must not leave the house without an umbrella. You want to hang out a load of washing, then you’ll be guaranteed of rain.  If the sun is shining and you decide to have a barbecue later, that can be enough to send in those rain clouds.

But we’re used to it.

We smile through it.

We even sing in it.

But one thing I can’t do is hear it. Nope, I can’t hear the rain. I discovered this a few weeks  ago while Ian and I were lying in bed early one morning and Ian said, “Listen to that rain.” I could hear no rain at all. In fact, I got out of bed, and practically had my ear against the window before I could hear it. I could see the rain no problem. It was heavy, lashing down, but I hadn’t been able to hear it.

I’ve mentioned on here before that I suffer from tinnitus, constant ringing and hissing in my ears. I wondered if the rain noise was on the same tone or pitch level as my tinnitus, and possibly my tinnitus was louder and drowning out the rain.

The tinnitus is very annoying, but I can live with it. No other option really. And no answers as to why I have that. It could be a side effect of the meds or it could just be another one of ‘my things’. Probably the latter.

I spoke to my GP about it, and she sent me to ENT for a hearing test. That was done a couple of weeks ago, and I found out that I do actually have some hearing loss. My hearing is lower than it should be.....not low enough to be deaf, but lower than it should be. And for one particular pitch level, it was even lower than that. And the sound of falling rain would fall into that category.

So that answered the question of why I couldn’t hear the rain. Now I would just like to know why I have some hearing loss. As far as I am aware, I used to be able to hear it fine.

But for now, I will just enjoy not hearing the rain, since we do seem to get an awful lot of the stuff. Maybe I am actually quite lucky!
Red and I not really enjoying the rain one day here a few years ago.


Friday, August 17, 2012

Didn't We Do Well.....

I have to say it.....prior to the Olympic Games I kept thinking what on earth had Britain been thinking when we put ourselves forward to host the Games. All that money when the country was struggling seemed obscene. All the hassle involved. I was sure we could become the laughing stock of the whole world. And I felt like that right up until the opening ceremony. 

Then some magic happened and my mind was changed.

Maybe it was seeing the Queen being whisked out of Buckingham Palace by James Bond, or maybe it was those young athletes getting to light the Olympic flame. I don’t know, but I was hooked for the next two weeks.

London 12 Olympics chose a slogan “Inspire a Nation”, and I certainly think it inspired people. But it was more than just about winning and getting medals. It was more than just about sport. There was a real feel of happiness in the country. People from all countries stood next to one another in race lanes with world politics and conflicts forgotten. And in the spectators' seats, people from all nations waved their flags as they cheered on their own and other countries. They celebrated the winners and cheered on those coming behind (I will not call them losers, because there were NO losers!). There seemed a sense of euphoria. Watching on television, you could almost feel the atmosphere. Even the sun shined for them!

It seemed to go smoothly, no problems, no bad press. And the athletes and spectators alike, couldn’t praise the thousands of volunteers highly enough. These people had willingly given up their time, to go and work at the Olympics, and I am sure they will remember those two weeks forever.

The closing ceremony was amazing, but sad in a way because it was a sign that the Olympics was over. It was like reading the final few pages of a good book. I am always at a loss afterwards and miss the people I had got to know throughout the chapters, and that was exactly how I felt on Monday morning. No checking to see what events to watch, no checking to see if any new records had been broken and no checking to see team GB’s medal tally. Speaking of which......we certainly did do well.



The Olympics might not have made us any money, it might have pulled us even further into debt, but I think it created a much needed feeling of pride in our nation, and yes, I am sure it did “Inspire a nation”



Monday, July 23, 2012

Symptom or Side Effect?

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

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

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


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

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

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

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


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


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

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



Wednesday, July 11, 2012

TN....The Suicide Disease

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

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

It sounds so over-dramatic. But is it?

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

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

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


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

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

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

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

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

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

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

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

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

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


Saturday, July 07, 2012

Papa

The 8th of July would have been my Papa's birthday. Had he still been alive, he would have reached the ripe old age of 101, and I could guarantee that he would still have had us all chuckling with laughter.

My Papa, was a fantastic man. A gentleman, but boy, could he make us all laugh with his antics. He used to do things like handstands and yodel and make funny noises just because he could, and of course, because it made all of his grandchildren laugh. He even used to go to the swimming baths and dive of the top dale and he was so proud of himself for doing so. When he was in his eighties, his GP saw him doing that and asked him to stop!

I could tell many a story about my Papa......all of his grandchildren could. When I was a little girl,  my Gran and Papa used to come to our house for dinner every Wednesday night. When my Papa was still working, I was allowed to walk down to meet him coming off the bus. On our way home, my Papa used to stop and buy me a bar of Fry's chocolate cream, a huge treat for me. I ate it on the way home, and he kept telling me "not to tell my Mammy!", which of course I didn't. Of course, then I could never finish my dinner, but my Mum was never the wiser about that bar of chocolate.

He played Santa Claus at Sunday school Christmas parties, and I was there, sitting on his knee as he asked me what I wanted for Christmas and I didn't even know it was him.  I think he had that "Ho-ho-ho" down to perfection. Just like the yodelling. And just like the Tarzan call. Yes, he used to beat his chest and pretend to be Tarzan. And he didn't mind where he was when he did it.......I'm sure he did it while he was jumping of the top dale at the swimming baths. I know he did it once while he was in hospital and had nurses running from all directions.

But there are three things I am sure we all associate with my Papa - Aromatics, Guinness and......the bookies. He always had a bag of aromatics in his pocket and dished them out to us all. Only one and we had to see how long we could make it last. For those who don't know, aromatics were little brown or pink hard cinnamon flavoured sweets. I always lost that competition. I always crunched. My Papa was not a drinker, but he did enjoy his Guinness and when I was wee, I learned how to pour the perfect pint of Guinness. Then........I was allowed some of that white frothy stuff from the top. And so, we come to the bookies. My Papa's regular haunt, which none of us were meant to know about. All he did was bet about five pence (yes, pence!) on a horse so there was absolutely no harm in it, but he liked to make excuses for where he'd been. However, his memory wasn't that great, so he often forgot something. Could have been the milk he was supposed to get from the shop. Or it could have been our dog. Yes, on more than one occasion, my Papa tied our dog up outside the bookies while he went in to put his wee fly bet on the horses, then forgot to untie him when he was going home. Poor Patch.....but he did love my Papa for all of those walks.

My Gran and Papa used to travel to California to visit my Aunt, Uncle and my two cousins. They used to love going over there, then after my Gran passed away my Papa went almost every winter for several weeks. He became known to all the locals, and I am quite sure he became known to many quite simply as 'Papa'.  Everyone just loved him.....and I can understand why.

When Ian and I got our first computer years ago, we brought my Papa up to our house so we could do an MSN video call (old fashioned Skype) with the family in California. He was no longer able to fly over there, so this was a big thing for him to be able to chat to them and see them. Ian and I had a lump in our throats at the end, when my Papa actually thanked the computer screen for letting him see them. I think it made us realise how special that had been for him.

Like I said at the start, he was a man who could make anyone laugh, but he was gentleman too. We all loved him so much, and to this day, we all still miss him.

On his ninetieth birthday, I wrote him a poem.

Papa

A lot of memories come back to me
Of what you were like when I was wee
With your funny sayings and conundrums galore
You could certainly never be called a bore

With a pint of Guinness, you were a happy man
You’d even let me pour it from the can
You’d let me sup the froth from the top
But when I got to the black stuff, I had to stop

You were always trying to get us to do acrobatics
And holding competitions for sucking aromatics
You taught us how to yodel....yodel-eh-hee-hee
But it never did sound the same coming from me

You made us all laugh with your Tarzan call
But when you did it in hospital, they thought you’d had a fall
They thought you’d maybe had a cardiac arrest
Until they found you beating your chest

Remember when you used to take wee Patch for a walk
You’d say you were just going around the block
Then the heavens opened and it started to pour
And two hours later you’d walk through our door

But you were bone dry, not soaked to the skin
Then you’d explain, giving me a grin
“I stayed out of the rain, I stood under a tree”
That was the explanation you’d give to me

Stood under a tree!!
My foot! Hee-hee
I know how you never got wet
You were in the bookies having a wee fly bet!

I’ve so many memories - too many to tell
It just goes to show you’ve done your job well
You’ve given us love and laughter too
And that’s why everyone would like a Papa like you!
E.S.


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.





Sunday, June 24, 2012

It's all about money....

Our country, like so many others, has a wee bit of a financial problem just now. The solution? To get as many people off benefits and into work.

Sounds so simple, doesn't it?

But the benefits they are talking about are sickness and disability benefits. The thought is, that most of the claimants are fraudulently claiming. The truth is, that probably a very small proportion are fraudulently claiming.

So, to try to sort out the real claimants from the others, claimants are being assessed by private companies (with no medical expertise), who work on a bonus scheme. The bonus scheme basically means that the more people they put off benefits, the more money the company makes from the government.

Now that sounds really fair, doesn't it..........

People with legitimate illnesses or disabilities have been taken off benefits. Those people have then had to go through appeal procedures (which cost the government more money), then their benefit has been reinstated. Sick people have been losing sleep worrying about this, some have even taken their own lives through fear of this.

Maybe it's time for the government to find other ways of saving some money.

Just one example of what they could do.......perhaps they could fill the "legal" loophole where stars and celebrities avoid paying tax.

I'm talking about Jimmy Carr, the (unfunny, in my opinion) comedian, who with the help of clever lawyers and accountants, he has managed to pay 1% in tax, while paying for his £8.5 million home in cash. Apparently he earns over three million a year......but pays 1% in tax??? And he has not broken the law!

The story about this broke last week in the news, and of course, Jimmy Carr is now saying that he is very sorry. Hmm.....yes, he is sorry. Sorry that he's been caught! And no doubt, there will be a few other celebrities shaking in their shoes right now, in case they're caught doing the same thing.

Ok, I know everyone would try to find ways of paying less tax, but 1% when you are earning that much just seems a bit ridiculous. Especially when doctors, nurses, teachers, mechanics, cleaners, secretaries etc do NOT have a choice.

So, yes, why doesn't the government try to fill that loophole in order to get a few more pennies in the piggy bank. I'm sure it would fill up much faster than the campaign against sick and disabled people.





Thursday, June 21, 2012

Catching Up

That seems to be the story of my life. I am forever trying to catch up and never seem to be able to keep on top things. I always seem to have a job which is needing done whether it be cleaning, washing clothes, cooking.....oh, and there is always a pile of clothes wanting to be ironed.....I just don't want to iron them.

I suppose every housewife is the same, but I learned not to let it worry me too much many years ago. My back was at its worse when we first got married, and it was hard enough getting out of bed some days, never mind run around with the vacuum cleaner. So housework could wait. But things can only pile up for so long, otherwise, the pile falls over, and just creates more work. Now, I am lucky, since I do have a hubby who is not adverse to helping with household chores and he is also a dab hand in the kitchen. But the ironing......well, that's one task that even he isn't keen on.

So today, that's what I am trying to tackle - the ironing pile. I actually thought it might be a good distraction. I had a bad TN pain day yesterday and spent a lot of the day trying to sleep it away. I don't want to get caught in that trap again of sleeping all day because my face hurts, so the iron is out today, and I have been pressing on with great gusto. I've only done half of it, so who knows, maybe by the time I have finished I will have forgotten about my face pain. Maybe I will have forgotten that there is a  butcher's knife wedged between my teeth and going up my cheek to my eye. Or maybe I could stand there and iron so much that my back will become so painful that it will make me wonder what all the fuss is about TN. Who knows...........

Actually, I can't complain much, because my pain has been reasonably low recently. I think my concoction of meds seems to be helping. The pain has been there, but I have been able to cope with it so much better. So a couple of bad days isn't so bad. I just wish the butcher would take his knife back.


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 22, 2012

Beautiful sunny weather here today, so I have been sitting outside. Inside the car, believe it or not. Even although it is sunny, there is still a breeze which I don't want near my face. Breeze and TN do not go well together.

I couldn't take my eyes off the side wall of the house. We have housemartins nesting there. These birds amaze me the way the swoop about in the sky looking for food, all the time chattering away to each other. Every year about the beginning of May they start to appear, having flown here from Africa. Some nests were still there from last year, but there are new birds who start building new ones. They come, they lay eggs, rear their young, then at the beginning of Autumn, they leave for Africa again. This is like their holiday home.

But the part that really amazes me is how on earth do they find their way every year to the same spot? I can hardly make it to my local Tesco without using a sat-nav. I know it's the same for other birds. They travel half way across the world every year. No maps, no AA route planner, no sat-navs. They just find their way.

I know there are several theories including earth's magnetism, position of the moon or the sun. But I don't think anyone really knows. I just think they are extremely clever. Humans are supposed to be the intelligent life on the planet, but I think there are other species on earth which are a lot smarter than us.

Ian used to keep homing pigeons. At this time of year the pigeon racing started. Prior to the racing, Ian took his birds out for a training session a couple of times a week. That involved packing his pigeons in a basket, me packing a picnic, and off we went for a drive. We would arrive at our destination, have our picnic while the pigeons settled after their drive. Then Ian opened their basket and released them. We always watched them as they circled about in the sky a few times, then headed off for home. We got back in the car and drove home, and inevitabely, the pigeons were sitting on the roof waiting for us. They nearly always arrived home before us. As the destination got further, I stayed at home, while he went away to realease the birds. My job was to watch for them coming home, so I could let him know which bird arrived home first.

Pigeon racing became a serious hobby for Ian. He looked after his pigeons, or doos, as they're called in Scotland, with such care and attention.  On a Friday night, he carefully selected which birds would go to the club, to be taken away to a destination and realeased the following morning. The destinations could be sixty miles away, or a few hundred miles away.

Then on the Saturday morning the fun began. The waiting. Nothing was allowed to get in the way of the doo races. We had to be at home for the arrival. Well, Ian had. I wasn't quite so keen. Not at the beginning anyway. But I have to admit that the excitement did grow on me. But I tended to sit in the house looking out the window, while Ian waited for them outside. I could hear him whistling, calling them, shaking a can of peanuts to encourage them to go into the loft. Sometimes, it, or rather he, was a great source of amusement to me and I often put pen to paper, writing poems about Ian and his doos.

Ian's doos actually did quite well and won several of the races. I didn't really take much to do with them. Well, actually, I took nothing to do with them! I wasn't too keen on being too close to "things" which fly. But one Saturday, Ian had to go out and asked me to clock the birds in. I was so nervous, and worried, but I did agree. He kept phoning to ask me if any of his doos were home. Sadly, no, they hadn't arrived. I felt guilty, as if it was my fault. But finally, out of nowhere, a pigeon appeared above me and flew to the pigeon loft. I quickly got the rubber ring off its leg, and put it into the special clock. Then another bird arrived, then another.....

Now I knew why Ian had been so excited by pigeon racing. It did give me a thrill seeing those birds come home from a race. The next time he phoned to see if any had arrived home and I was able to proudly tell him that I had four race rings in the pigeon clock. Later that night we found his birds had taken the top four prizes in the racing club. I was so proud of myself....but all I had done was put the rings in the clock. It was those birds who had done the hard work. The glory was all theirs.

But how, just how do they do it?

Shortly after that race, we moved house, so no longer had the pigeons. But I often sit and read those poems I wrote and remember those race days. Do I miss them? No.....but they are good days to look back on. Even on the worst of days, I can raise a smile thinking of the day I timed in the first four pigeons in the club.

Ian and his Doos
He talks about nothing else. It's just "Doos, doos, doos!"
At least he's not in the pub every night, downing lots of booze
But I am wondering if it's the doos he loves
The way he treats them with kid gloves
He scrapes them out faithfully, checking all their motions
Gives them all that special feeding, never mind the pills and potions
He puts garlic in their water and even gives them herbal tea
Honestly, I’m sure they are better fed than me
He puts them in their basket, then takes them for a run
Then whispers sweet nothings about going to have some fun
"Look, the sun is shining....it really is the perfect day
A nice wee spot in the country," that's what I've heard him say
Then off he goes to the perfect spot with his precious pigeons
And I'm left at home.........timing in the guid yins!
Then he calls on his way back home with sweet nothings just for me
"Are they home yet?"then he asks me what's for tea! 
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.



Saturday, May 12, 2012

Coping

I had an appointment at my pain clinic through the week. We were discussing how people have to learn to cope with living with chronic pain, as opposed to sitting feeling sorry for ourselves, waiting for a miraculous cure. We also need to learn to cope with living with a certain degree of side effects with the meds. (What I can’t figure out is why side effects affect me worse some days than other days.....but that’s a whole other blog post)

I think that’s where acceptance comes in. I know I’ve mentioned it before with regard to my back pain. But for any type of chronic pain, I think there needs to be a degree of acceptance in order to cope. If you can’t accept what you have to deal with, you get angry, upset and annoyed with it. All that does is wear you down. Tires you out. And trust me, when you are dealing with chronic pain, you need every single ounce of energy.

It is the same with the meds. They might help, but they also might give us a few extra pounds to carry about. They might make us a bit more tired and a bit woozy. But if they help the pain a bit, then maybe it’s worth accepting those side effects. (Obviously not, if the side effects are serious)



I’m not trying to say that we shouldn’t moan sometimes. We need to do that from time to time. It’s like a release valve. Get it out of our systems.....then get on with living again.

I’m also not saying that we should just accept that we have chronic pain, and curl up and do nothing. But maybe we should accept it, and also accept that there are some things in life that we can’t do any more because of it. But......we can find other things instead. Even if it is something as crazy as writing a blog!

Sometimes coping means using a distraction. For me, a distraction could be anything from watching Britain’s Got Talent to counting just how many sleeping positions my dog can get into in the space of one hour. Literally anything, rather than think about how much pain I’m in. I am still working towards getting back to drawing and painting. I managed it one day a few weeks ago....and I will get back to it again. I will! That would be the perfect distraction for me, but going back to the acceptance part - I have to accept that some days I just can’t even think about trying to draw a straight line.

The other problem nearly all chronic patients suffer from is the feeling of isolation. The feeling that nobody ‘really’ understands. Sometimes they have that feeling even if they are surrounded by loving, caring family, so can you imagine what it must be like for people who live alone with their pain? To be honest, I can’t really imagine how bad that would be. I think that is why support groups are so good. Whether on-line or actual real life groups, I am convinced that they must help people who feel isolated. To feel that there is someone out there who really understands the pain you are in really does make a difference.

So.....you’ll probably think that I’ve got it all worked out now.....no more bad days. Hmmm.....if only.
 I actually started writing this on Wednesday evenening, after my pain clinic appointment. The following day we were out, and my pain got worse. By Friday, I was hardly out of my bed. My face and head were so painful. Today, the pain has calmed down a little bit, but I have that woozy feeling I mentioned earlier.

It's not always easy not to get upset at having this kind of life. It's not always easy not to get angry with this pain. It's not always easy to find a distraction when you're in terrible pain.


But we can only try.......and that's what counts.


Monday, May 07, 2012

Food Glorious Food

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

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

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

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

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

I suppose it’s just like life really.

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


Wednesday, May 02, 2012

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


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

What I wrote was this -

Joke for the day



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

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

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

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


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


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

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

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

Yesterday, I tried to do that.

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

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

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


I had pushed my limits a little bit.

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




Thursday, April 26, 2012

Oh dear.....

Since I had been having a few better days earlier this week, I decided to do a bit of tidying in my kitchen cupboards. This was a long overdue and much needed task, but one of those jobs that I always put off. Kind of like the ironing!

I had so many biscuit tins in my cupboards that it was unbelievable. Most of them empty, I am afraid to say. I used to bake when I was feeling better, so those tins were often filled with some home-made goodies. Now they just contained crumbs or shop bought biscuits.

I was trying to get a bit more organization into the cupboard, so some tins just had to go. As I lifted a tin from the back, I heard the rattle of a biscuit inside. I opened it to find a shortbread biscuit. A home-made shortbread biscuit! Why there was a single biscuit left in the tin, I don't know. Normally when home-made cakes or biscuits are in the house, they disappear kind of quickly. And normally, when we eat the second last biscuit, we say that it wouldn't be fair to leave one single one all by itself in the tin.....it would get lonely! So I don't quite know why one was left. Perhaps I left it for Ian. Perhaps Ian left it for me. I don't know.

One of Ian's favourites too - a round shortbread, rolled in demerara sugar, just the way my Gran used to make them. Her biscuit tin was always full of them. My other Gran used to make the more traditional Scottish shortbread, equally delicious, but I tend to make that only at New Year. She taught me how to make it when I was a young girl and I cherish those memories standing in her kitchen, kneading the shortbread dough with her.

But anyway, that poor old shortbread biscuit......I have not got a clue how old it was. I haven't baked for months. I'm quite sure I haven't baked this year. Oh dear.....yes, oh dear, that biscuit could be six month old maybe. Maybe less. But possibly more! So I am afraid it went into the bin. I am surprised that it didn't just jump out of the tin and into the bin by itself!

It might not have been eaten when it was supposed to be eaten, but that wee shortbread biscuit still gave me some enjoyment when I found it as it brought back some lovely memories of both my Grans.

Note that I still haven't tackled my ironing pile, and there may well be clothes in there which have been there for as long as that lonely shortbread biscuit lived in that tin. Hmm......well, another little while won't harm them then, will it?




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!






Monday, April 16, 2012

Body Shop

A friend on a forum mentioned yesterday that she could be doing with a new leg. There were a few replies from others saying that they could use a new brain, new back etc.

Just like cars need a new set of tyres and exhausts, we could all do with new body parts too. Wouldn’t it be good if we could just walk into a body parts shop and replace the bits and pieces which give us bother.

Imagine you’re out for your shopping, and in between the butcher’s and the greengrocer’s, there it is........the Spare Body Parts Shop.

“Excuse me, I’m looking for a new leg, 30 inches long, about this wide.....”

“Right or left Madam?”  Well, it would need to be right, wouldn’t it. Couldn’t go about with two left feet, could we?

“None in stock at the moment......need to order that up for you. Will be in next week.” Wow what a service!

A new back....a new face......oh that sounds just like a dream come true. 


I’m sure replacement body parts would cost a fortune or even.....yes, wait for it.....an arm and a leg! (Sorry, just had to get that in)

But I’m sure it would be worth it to a lot of people.
Do you dread getting out of bed? 
Is your hip giving you gyp?
Is that shoulder making you feel older?
A brain causing pain?
Worry no more, just pop to our store
For legs, brains & backs and much, much more..........





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.





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, April 08, 2012

Happy Easter


When I was a wee girl, Easter didn’t mean lots of chocolate eggs.

It meant decorating a boiled egg then going to the nearest hill, and rolling the egg down from the top. Then of course, I ate the egg, no matter what it was covered in, even if the shell had burst on the way down. I peeled off the remnants of the shell, the grass and who knows whatever else, then enjoyed my egg.

A few years ago when we moved here, my niece and nephew came here to do the same. Plenty of hills to choose from, we all decorated our eggs, then off we went. This was a sight to be seen. My Mum, then in her early seventies, climbed a hill with my niece, nephew, Red, the dog and the eggs.

My Dad, my sister, her husband, Ian and myself all stood at the bottom to cheer them on.

So, the first egg was rolled......my dog saw it and immediately ran after it, caught up with it before it even got half-way down the hill, crunched through the shell and ate it. Then the second egg came......oh, this was a great game for Red. A bit disappointing for my niece and nephew as they didn’t get the chance to see their eggs roll all the way to the bottom, but what a laugh we had that day.

By the time the fourth egg was on it’s way, I was shouting to hold Red back. “No more eggs!”

Everyone just laughed, “But he’s having fun!!!!” I couldn’t argue with that. He was having fun. We were all having fun.

But let me tell you.....it wasn’t much fun in our house later that night. There was a rather unpleasant smell in the air!

Happy Easter to all my friends. But, please don't eat too many eggs at one sitting, whether they be the chocolate or the plain old boiled variety.





Sunday, April 01, 2012

Bring Out The Violins.....Nah, Don't Bother

Sometimes I feel like I am teetering on the edge. The edge of what, I don’t quite know. About to scream?  About to burst into floods of tears? Or about to go to bed and sleep for the rest of the day? The third option is probably the one I’ll go for. I do that sometimes. Well, actually, I do that quite a lot. I never actually burst into floods of tears. And I don’t scream. Well, I did when I fell that time and cracked my ribs on the wardrobe. But that’s probably the only time.

I guess I am feeling sorry for myself.  I try to avoid that, but some days, I can’t help but feel life isn’t very fair. I know it’s not fair for a lot of people. But I am not superhuman, so this does get to me sometimes.

I do try to stay positive all the time, but sometimes that is hard work. I know I have lots of things to be grateful for in life.....but sometimes.....just sometimes, I can’t help but think about what chronic pain has taken away from me.

Life has always been different. Most of the time it has been kind of matter of fact that I just couldn’t do things because of the pain. I just accepted it. Took it all in my stride. No screaming and shouting.....I just got on with it. I even laughed things off.

People can be stupid sometimes.......actually insensitive. Way back after giving up work through ill health, I remember a friend saying that he thought I should take up child-minding. Great money in it, he said. Ahem.....ok, so I wasn’t fit to work as a clerical officer, but you think I’d be ok for child minding? Ian and I didn’t have children ourselves, because for starters,  we didn’t know what a pregnancy would have done to my back, but common sense told us it would get worse and I just wasn’t going to be fit enough to look after a baby, let alone once that baby gets to the toddling stage. One of those ‘head must rule the heart’ decisions.

But those big things.....I didn’t let them beat me down. Obviously I had a lot of help getting over the big hurdles like those of not having children and giving up work. Ian and I were in that together. He kind of knew what he was getting when he got married to me. He knew about the pain. He couldn’t not know about it. And even back then, he tried to keep me smiling throughout it. “In sickness and in health.....” I do remember him making a funny face at me when we came to that line in our wedding vows. I’m surprised I didn’t start giggling through the service.

But pain has tried to take away so many of the smaller things too. Hobbies that I have, then the pain gets too much, so I need to stop. Jewellery making, needlework, card making, painting. Then there’s the cooking and baking. Unless you are in pain, you don’t appreciate how much making a plate of plain old mince and tatties hurts.

I still try to do some of these things. Yes, there is pain.....but I want to do things sometimes. I don’t want to just lie about and do nothing. I want to cook dinner sometimes, even though it hurts. I want to bake Ian his favourite apple and cinnamon cake sometimes. I want to make my Dad a birthday card. I want to draw. I want to get the paintbrushes out again. And I will......sometime.

The problem is that now it’s not just pain that prevents me from doing things. The high doses of medication for the trigeminal neuralgia come with their own problems. With every increase, or change there comes a new set of side effects ranging from tiredness to twitches. I desperately want to draw but just now I can’t keep my fingers steady. They shake and they twitch at random, so maybe not the time to be picking up the pencils. I could just see me trying to draw Red, my labrador, and he would look like a curly haired poodle. Think he would be quite offended.

      ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀   ❀❀❀

Well, I did start the day feeling sorry for myself.....wrote this, but didn’t publish it in my blog. I wasn’t sure if I should. I am not looking for sympathy.

But, I had a long sleep this afternoon, and woke up feeling better. So, maybe the sleep helped. Maybe me writing about how I was feeling helped. I don’t really know what helped. I don’t really care. I am back to being me......back to just accepting that my life has to be like this. And being positive.
 So I decided to publish it anyway. Just to let people see that everybody can have bad days. Everybody can feel sorry for themselves sometimes. But the main thing is that everybody can pick up again. Sometimes, you just need to get it out of your system.


Now, I wonder if anyone is wanting a portrait of a curly haired poodle..........


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.