Showing posts with label scoliosis. Show all posts
Showing posts with label scoliosis. Show all posts

Sunday, November 27, 2011

Dem bones, dem bones.....

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

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

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

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

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

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

Saturday, November 12, 2011

Acceptance

I remember one time years ago, shortly after I gave up work, meeting a woman who had arthritis in her shoulder. She told me that she would never let it beat her.

Those words stuck with me - but for a different reason than you would think.

Most people would say she’s a brave woman, she’s going to fight against that awful pain, and she’s not going to let it get her down.

But I think that was the day my attitude to life changed.

I had been doing that all my life - trying not to let pain beat me. Constantly fighting against my back pain. Fighting against it day in and day out.

When I was a teenager, I wouldn’t even admit that my back was hurting so much. I just wanted to be “normal”, whatever that is. Of course, I wasn’t normal - I had such an odd shaped back. As the scoliosis developed, it pushed my pelvis out of shape. But I tried to ignore it and the pain. I used to go shopping with my sister and I think I fainted in too many shopping centres for her liking. We were always standing in a queue about to buy something. My back got more and more painful from standing, but no, I wasn’t going to let it beat me. I stood there, then everything would go dark and down I went.

I lost count of how many times I fainted. That was my back’s way of telling me, ‘okay, if you’re not going to stop, I’ll make you!’ Of course, everybody looked at me, then asked when I’d last eaten. They all thought I must have been starving myself. But I wasn’t. The only thing I was guilty of was trying to walk around with a very sore back.

I eventually had to go off sick from work when I was twenty-five. It had been a nightmare. I wasn’t coping. But I just didn’t want to go off sick. No choice though. My back locked up on me and my Mum and Dad had to get the Doctor. I stayed off for about eight months and was determined to get back to work. I was due to get married, and I just didn’t want to start married life being “sick”, so I pushed myself. Actually, I pushed myself for the next two years or so. I was getting up in the morning, going to work, coming home and going to bed. I was fit for nothing. The pain was constant and I was struggling so much. Eventually, when I was 28, the realization came that I would have to give up work.

But I was still fighting. Still not wanting to let the pain beat me.

Then that woman said those words “I’ll never let it beat me”. Everything seemed to fall into place for me. I was in constant severe pain. I thought about it. Those were words I had used myself. Those words meant that I was in a fight. Who with? I was in a fight with my pain. The pain was mine, so I was fighting with myself. But my pain was stronger than me. I would never be able to beat it in a fight.


I think that was the point when I realised that I would have to learn to live alongside my pain rather than be in a constant battle against it. Fighting is negative and by nature, I am a positive person. I learned to listen to my body so much more. I learned that living with chronic pain would have to be part of my life. I learned that if I needed to sit down, I would have to do that. I learned that if my back said just to stay in bed all day, it meant business. I am not trying to say that we have the perfect relationship....I do occasionally try to ignore it, and it complains, but on the whole, I listen and do what I am told, and we get along better than before.

So I suppose I have accepted my life with chronic pain. But acceptance doesn't mean I have to like it!


For me, life is so much easier when there is no fighting involved. Especially when the person you are fighting with is yourself. Fighting uses up so much energy.....and trust me, when you live with constant pain, you need every ounce of energy.


Thursday, November 10, 2011

Weight a minute....

Ok....after all those years of being a big skinny-malink, it is finally happening. I am putting on weight. Too much. When I used to sit and stuff my face with whatever took my fancy (lots of chocolate), I could do so with the knowledge that my weight wouldn't change. Even if I wanted it to. People used to look at me with jealousy in their eyes. "I just need to look at a chocolate bar and my weight goes up" was something I heard from people all the time.  I was even asked if I was anorexic by a GP once. I just couldn't put on weight. And if I was ill, even just with the cold, I lost weight. Hmmm.....those were the days.

When I was ten, the scoliosis appeared. My Mum had me straight to the GP who sent an urgent referral to the orthopaedic surgeon at the local hospital. The surgeon wasn't too concerned about it. In fact, I can still hear his words in my head. "Eat lots of mars bars and it will never be noticeable!" Quite funny looking back on it now. Anyway I took him to his word. I ate lots of mars bars, but it was still noticeable. (As the years went on he did confess that he didn't know much about scoliosis)

Anyway, lots of mars bars, milky ways, flakes, dairy milk and the like later, I am starting to put on weight. Actually I started a couple of years ago. I was even quite excited by it. Finally I wasn't dangerously underweight according to height/weight charts. But gradually it has got higher and higher still. As the scoliosis worsened in my back, so did the back pain. Obviously, more weight for my back to carry would be a bad idea.

Coincidentally, my weight started to rise once I started taking all the different meds for my Trigeminal Neuralgia. So I could blame the meds for the rise. Also, the past couple of years have been particularly bad pain-wise and I have spent a lot of my time just lying in my bed. So I could blame that too. But......the truth is that while I have lain in my bed feeling sore, I have taken a liking to milky ways. Nice and soft, no chewing involved, just nice and sweet.

So there you have it, for the last two years or so, I have stuffed my face with milky ways. Giving myself the excuse that because I have so much pain, I deserve a wee treat. Giving myself the excuse that the tablets I take make me put on weight. Like it was written in the directions, these tablets need a milky way to help them on their way down!

But it has to stop. I will have no clothes that fit if this carries on. I am not dieting. Just not eating any more of those silly milky ways. No more!

Saturday, October 22, 2011

Living with TN


My pain has actually been around for more years than I care to remember, but in the beginning I thought the pain was being caused by migraines or from toothache (even though the dentist could never find a problem). I was constantly telling my doctor about these headaches which hurt so badly and went on and on and on. I remember telling doctors that the pain was just everywhere....even my face was hurting. Nobody twigged. I just kept being given more painkillers and migraine remedies. But nothing helped. I think that doctors probably saw me as a lost cause. I think they probably put the headaches down to the stress of living with a chronic back problem. So they just kept signing prescriptions for me and gave me the sympathetic smile.

I gave up work seventeen years ago and I can remember as far back as then having headache after headache. But over the years the headaches became worse and that ‘toothache’ also became worse. Sometimes it was on the top teeth, sometimes the bottom, sometimes both top and bottom, but it was always there. Dentists seemed stumped by it. One dentist even told me that maybe I wasn’t cleaning my teeth properly!!! Finally, a new dentist I saw told me that this was a nerve problem and sent me to my doctor. It was the first time the word nerve had ever been mentioned. Finally I was diagnosed with Trigeminal Neuralgia.

So here I am now, a few years on. The pain is worse than ever. I have gone through several combinations of drugs, but still the pain worsens. Or maybe my tolerance level has lessened. Actually, I don’t think that is the case. The TN / ATN has definitely become worse over the years.

My ATN affects my head, face and teeth. On a good day, the pain is normally at a level of 3 or 4 out of 10. But that can change instantly. My pain is mostly right sided, however, the left side also gets affected by it from time to time. It can be made worse by a number of things like talking, eating, drinking or cleaning my teeth. But the worst thing for me and many others is cold. TN hates the cold.

It is now the 22nd of October and I really do not want to leave my house. I am scared of leaving my house. Even during the summer, a nice day, but a cool breeze.....to anyone else, that cool breeze was pleasant. But to me, it was frightening because it could make my pain worse. I hardly go out the house. In fact, some days, I hardly leave my bed. When the pain is bad, I just hope for sleep to take over. I don’t socialize. I didn’t do much of that anyway, due to my back problems, but now a social life is completely non-existent. Even the odd trip down to visit my family 40 miles away is now being affected. It’s not nice to go visiting when you are in pain. It is nice to see people. Kind of like a distraction. But to travel 40 miles, to then be in such bad pain isn’t good. TN affects so many aspects of life.

The pain in my head feels as if my head is trapped in a vice which is being turned tighter and tighter. My cheekbone and forehead feel as though they have been kicked by a horse. My teeth constantly feel as though someone has a pair of pliers and is trying to pull them out. I have a deep, deep pain in the back of my head, just behind my ear. When the TN affects me with shock type pain, it tends to be in my front teeth, top or bottom and radiates along my jaw on both sides right to my ears. It feels as if a live electric cable has been put against my teeth. It’s like torture.

I really do not know what life is like without pain. For most of my life I have lived with chronic back, head and face pain. People used to say that I don’t complain despite having these problems. That may have been true, but lately I have complained plenty. Possibly too much.....people possibly don’t really want to hear me complaining. I can’t blame them for that. Besides, it’s my problem, not anyone else’s. But life isn’t easy living with the pain of Trigeminal Neuralgia, and it becomes very difficult not to complain.

Trigemal Neuralgia takes over a person’s life. It also takes over their husband’s /wife’s / family’s life. Fortunately, I have a husband who understands and helps. Not everyone has one of those though. My husband is my rock and all I can do is say “thank you” to him.