Showing posts with label meds. Show all posts
Showing posts with label meds. Show all posts

Friday, June 14, 2013

It's All About Awareness

I wish I didn't have pain.

I wish I wasn't so tired.

I wish I didn't have to take so many meds every day.

Ohhh......I could make lots of wishes. But there really is no point.

You have to make the best with what you've got. And I do try to do that. Most of the time anyway.

But there are "those days" when I do feel a wee bit sorry for myself. But I'm sure everyone gets those. Thankfully, they don't last for long and I can get back to normal again.  I hear people say that they wished they could feel normal.....but this is normal for me, with all the pain, the tiredness and all the other bits and pieces. It's what I am used to. Of course, I wish I wasn't, but.......

Isn't it sad that for so many people, this is what "normal" is. So many people live with illnesses and conditions day in and day out with no chance of change. And so many people's conditions are invisible to others. Just like Trigeminal Neuralgia.

facebook.com/endTrigeminalNeuralgia
This week's post on our TN Awareness page on Facebook was about the fact that Trigeminal Neuralgia is invisible. However, on a positive note, there are a lot of awareness groups just now, so it may be invisible, but it is certainly not going to be silent any longer. We want everyone to know about TN.

Our own group now has this week started a TN blog. If you haven't already seen it, please take a look and let us know what you think. Here's the link http://endtn.blogspot.co.uk/

So there you go. You came to read my blog and get a link to another one as well.

A special two for one offer for today only!

Friday, January 04, 2013

I am a bit slow off the mark here, but I want to wish all of you a very happy new year. 
 I hope you all managed to enjoy the Christmas and New Year celebrations.

The week between Christmas and New Year, proved to be a crazy one for me. I had to increase my tegretol about three weeks before and fortunately, I had no adverse effects.

Obviously they decided to build up in my system for three weeks and then they hit me. And they really did hit me.


I had been feeling kind of “off” all day. This in itself was nothing unusual. I get days like this often. I call them my “side effect” days. Just a general horrible feeling which I find hard to describe and I put them down to the meds I’m on.

However, I went to bed early, slept on and off, then got up through the night to go to the loo. I felt a bit staggery when I got out of bed....again nothing that unusual. However, the staggering went to full scale balance loss. The place was spinning and I think I bounced off of everything in sight, eventually catching my leg on something which led me to fall into a heap on the floor.


Ian (yet again, poor man!) came running and picked me up and got me into a chair. He had thought that I had done my usual and tripped over something. But when I tried to explain that I was so dizzy, I found my voice had gone strange too.
 

When I did get back to bed, I think I lay their so rigidly, to try to stop the spinning, but I never slept a wink. Nor did Ian. I have to say I didn’t even think about the increase in my meds. I was scared.....I actually thought there was something seriously wrong with me. It was Ian who suggested that it may be a side effect and sure enough, on checking, it is listed there for higher doses. So dose back down, pain back up. Eventually, no more dizziness, but a few bruises to show for it all.



Oh, these meds.....so horrible having to take them. But I don’t know how I’d cope without without them.


Anyway I hope 2013 is better to everyone.




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.


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.....


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.


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.




Wednesday, March 28, 2012

Patient or Carer???

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

Thankfully it started to calm down over the weekend.

By Tuesday, when  I was feeling a good bit better (isn't that typical), I had an appointment to see my GP.

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 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, my husband.......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 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.

The chronic pain patient doesn't get it easy. But I believe that their carer doesn't get it too easy either.


Saturday, October 22, 2011

What is Trigeminal Neuralgia

So.......Trigeminal Neuralgia (TN)

Here is a link to a web site which explains TN better than I could.

Trigeminal Neuralgia

For me, and so many other people, this disease is like a living hell sometimes. And the times when it’s not a living hell, we live in fear because we know that it’s just waiting to come back.

Like everything in life, TN affects everybody differently. For me I have constant pain which is actually classed as Atypical Trigeminal Neuralgia. Sometimes it’s referred to as trigeminal neuropathic pain or even just chronic facial pain. That seems too simple a name to give to something which is so powerful. I also get the ‘electric shock’ or ‘zap’ type pain of Classical Trigeminal Neuralgia. Fortunately, I don’t experience that too often. But when I do get that, it tends to be in my teeth and is a total nightmare.

Some people can get those shocks constantly at any point of the tregeminal nerve. Some may get the shocks for a time, and then nothing for weeks, months or even years. Other people get hit by those shocks relentlessly.

But for those who have Atypical, the pain never really goes. You have to become accustomed to living with a certain degree of pain, despite being on several medications. Obviously, the meds give problems too, but life without them would be unbearable.

Before being diagnosed with TN, I had never heard of this condition. Not many people have heard of it. Doctors seem very often to be at a loss, as it is such a difficult condition to treat.

It is not a life threatening condition, therefore, research into it does not tend to get a lot of funding. I say that TN is not a life threatening condition....however, it has earned the nickname “The suicide disease”.