Showing posts with label hope. Show all posts
Showing posts with label hope. Show all posts

Friday, February 21, 2014

Coping Mechanisms

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

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

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

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

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





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

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

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

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

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

There is always something to smile about.

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

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

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



Friday, December 06, 2013

My Mum

I've written about my Mum before in the posts Dear Mum and Mother's Day. She has also been in a few of my other posts, so I am sure you will have picked up that my Mum was very, very special.

To be honest, I didn't think I would ever write the post which I am about to write. But today, something is just making me write it.

Four years ago on this very day, my family and I were sitting around my Mum's bed waiting and hoping that she could have as peaceful an end to her life as possible. And thankfully she did, just a few minutes after midnight, my Mum passed away.

My Mum, out skipping with her granddaughter
Right up until the summer of that year, my Mum had been in perfect health. Better than perfect, in fact. My Mum was in her element when playing with her grandchildren. She would be outside 'running races' or skipping with my young niece. If the weather wasn't good enough to be outside doing that, she had the grandchildren in the kitchen baking pancakes, scones and cakes. If they were happy, she was happy.

But at the end of that summer, my Mum developed an irritating cough. A lot of people in the area had a similar irritating cough so nobody, including her doctor, thought it was anything to worry about. But it became persistant, and was dragging her down. The doctor was doing all the usual things doctors do for irritating coughs, but nothing was helping. I can remember visiting and I got a shock....she looked ghastly.

The doctor was coming in to visit the following day, and when he did, I think he got a shock too at how fast she seemed to be going downhill. He had her admitted to hospital. She was put on oxygen and looked so much better. But they had to find out the cause of the cough.

Turned out my Mum had cancer of the kidney and it had spread, and obviously now her lungs were affected. It was so widespread, and nothing could be done. She had no symptoms other than that cough, so there had been no reason to go to the doctor earlier. The doctor showed us the scan, and I remember asking if they were sure that was Mum's scan. She only went in with a cough, and now we were facing this.

We got Mum home, and just tried to make the most of the next few weeks. My Mum just faced up to this with a strength which was amazing, but didn't really surprise us.

I have told people in the past that those seven weeks were the worst weeks of my life, but in a strange way, they were also the best weeks of my life. The times we shared were more than special. I stayed there most of the time and we talked, we looked through photos together or we played scrabble. We laughed. We talked more. Sometimes we didn't talk. Sometimes we just looked at each other....no words were needed.

My Dad, sister and I kind of held each other together throughout those weeks. Actually, I think it was my Mum who was holding all of us together. But we get through it. And now today, four years on, it still feels as though she should answer the phone when I phone my Dad. It still feels like she should be in the kitchen when I visit, making me those treacle pancakes. It still feels like she should still be there. And I have realised that I like that feeling, and I never want it to stop. I like the memories and I don't want them to go. My Mum will always be part of me, part of who I am. She will always be in my head and she will always be in my heart giving me hope and strength when I need it.

So today is just one of those days when we have thought even more than usual about my Mum. And she has been there giving me and my family hope and strength today as always. And I know she always will be doing just that. She was special...very, very special.
My Mum at our wedding in 1992

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.....


Wednesday, February 29, 2012

Hope

My face wasn’t doing good last week. I mean, it’s never good, but last week it got worse. One day it just went off the charts for me.

This is what used to happen with my back. It would be bad, and I would learn to cope with it at that level. Then it would get worse, and I had to learn to cope with it at that new level.

I suppose that’s what living with chronic pain is like. It’s always there, so you kind of get used to it. Then it sends in a reminder. Just in case you had forgotten. If only..........

I felt like I had been coping with my face a little better before this last episode. I actually felt as though I was getting my life back on track. You know, like actually getting out of bed and getting dressed in the mornings. Then wham, bam, here we go again.


My GP had received a letter from the pain clinic a couple of weeks ago suggesting a new med for me to try. At that point, I was doing that bit better, and the thought of a new med actually scared me. Going through all the starting from scratch with it, the side effects, then of course, the big one - is it actually going to help?

My GP completely understood, and agreed with me. If I am doing ok on what I am on, there is no point in changing. Of course, the pain clinic hadn’t sent that letter just for the fun of it. It was because the pain clinic nurse called to see how I was doing a few weeks ago, right bang slap in the middle of a bad spell. So they were trying to help. It was shortly after I spoke to her that I had that little bit of a better spell. Then I get another bad spell. It can be like being on one of those rollercoasters. One day you're up, next your down. I guess I am just grateful for the 'up' days.

I am hoping that it was just a bad spell last week, and hopefully it will stay calmed down. Just now, it’s not too bad, but my teeth are feeling as though they are on the verge of going crazy. Or maybe that's just me......

But at least if it all does get worse again, then I know that there is another option out there for me. And I suppose it’s good to know that there are other options.

There have to be other options. And there has to be knowledge that someone is wanting to help.

But most of all, there has to be hope of finding a way out of this illness.

We need hope. A lot of hope.

We really need it.........