This is a Pain Rant
A major Pain (and anger) rant
I have had a day from hell
Yet again
And I am 100% sick of it....
I ran out of my Solpadol painkillers this evening, which I feel guilty taking because it is always emphasised to me that they are addictive blah blah blah BLAH
Why the hell would I want to be addicted to something that barely makes a difference to me and my pain ? I've heard rumours that taking 60mg of codeine once will make you as high as a kite, let alone taking it 3 times a day....
All it does for me is SOMETIMES it takes the top edge off of the pain... and SOMETIMES it slightly relaxes the muscles...
And sometimes I would never know I'd taken it... so much for the wonderful euphoric effect
I wish !
So... I had 2 doses and then none for this evening... although the 2 lots I took today had hardly any effect. I have had a day of horrible pain and stiffness, and to make matters worse it was cold and I had to pay late bills instead of ordering heating oil with my meagre months salary (€300 for part time work) !
And another thing... I have apparently had arthritis for years as an adult (besides having Stills Disease as a child since I was 2), and now my spine is also affected seriously, why, at the very most, does my consultant only ever offer me NSAIDS ? Which he knows I can't take as my stomach is ********.
Why after several years seeing the same consultant do I not have a full diagnosis and and am not being treated specifically ?
A part of me says 'Girl YOU don't complain enough maybe'.... And then... at times... I even consider that maybe I'm imagining all this pain and inflammation and I'm not given the required drugs as I'm not ill enough to warrant them...
See how insidious the whole situation gets ?
All I know is I'm sick of IT.... Sick of the constant never ever ending pain and stiffness.... It's like living your whole life walking through MUD, and having PAIN walking through mud... Even opening a door hurts in the joints of my hand and in the arm muscles and in my shoulder...
I have to consciously consider and think about every single movement I make, and I can feel every single movement I make, feel it in every single muscle in my body. I have to consciously walk, it's no longer unconscious.
SO
Despite the fact that I can't even afford heating oil, or a plumber to fix the system and restore my hot water, I will scrimp and save and go without...
I am going to get an appointment with another consultant and if I'm lucky hopefully make life bearable again, because as it is I do nothing but struggle through pain and extreme exhaustion. I have almost no current quality of life.
Watch this space...
Showing posts with label Rheumatoid Arthritis General. Show all posts
Showing posts with label Rheumatoid Arthritis General. Show all posts
19 October 2009
28 September 2009
Off The Grains - Result
Well its been a while now since I decided to try and see if not eating grains made any kind of difference to me personally.
I was 99% good !
And 1% bad....
Well we can't all be perfect. Especially not me!
I mostly didn't eat any kind of grain at all. I lapsed on a very few occasions, such as croissants... a cheese and marmite sarnie.....small bits of rice... testing a bit of a peanut butter cookie I made for a friend...
I actually do feel a bit less stiff, and in particular much less bloated. But the pain levels are the same. As a result I will definitely continue to eat a lot less grains, in particular ones containing gluten, as the less bloated feeling is much more comfortable all round.
I have some very good tasting gluten free wholegrain organic pasta made by Doves Farm in the UK. They make a fantastic range of very high quality organic flours and related products, which I use whenever I can.
I have also almost completely cut out sugar, but I always put honey in my drinks etc anyway. Maybe this has also helped with reducing the stiffness slightly, its hard to tell. However I ate very little sugar before reducing it.
But I definitely feel less bloated and therefore more comfortable.
And I have lost 10lbs ! Which is a big bonus for my joints and muscles and my back.
I was 99% good !
And 1% bad....
Well we can't all be perfect. Especially not me!
I mostly didn't eat any kind of grain at all. I lapsed on a very few occasions, such as croissants... a cheese and marmite sarnie.....small bits of rice... testing a bit of a peanut butter cookie I made for a friend...
I actually do feel a bit less stiff, and in particular much less bloated. But the pain levels are the same. As a result I will definitely continue to eat a lot less grains, in particular ones containing gluten, as the less bloated feeling is much more comfortable all round.
I have some very good tasting gluten free wholegrain organic pasta made by Doves Farm in the UK. They make a fantastic range of very high quality organic flours and related products, which I use whenever I can.
I have also almost completely cut out sugar, but I always put honey in my drinks etc anyway. Maybe this has also helped with reducing the stiffness slightly, its hard to tell. However I ate very little sugar before reducing it.
But I definitely feel less bloated and therefore more comfortable.
And I have lost 10lbs ! Which is a big bonus for my joints and muscles and my back.
25 August 2009
An Introduction To Me
I have had RA since I was 2 (Stills Disease). You would think that I would be used to it, and in some ways I am. However, it partially went away from about age 10 to my mid 30s and then re-appeared, slowly, insidiously and bit by bit eating into how I led my life.
It is now, as a 48 year old woman, that total acceptance is impossible. If I totally accept it then I am letting it have its wicked way. And as long as I fight it, it will never win. I feel very strongly about this, as positive thought begets positive action.
RA is an auto immune disease. This is where the body’s auto immune system attacks the body’s own tissues, in the case of RA primarily the joints and the tissues surrounding them, and in some cases other organs of the body.
Your immune system normally hunts down and then kills off all invaders in your body, such as infections and such. With an auto immune disease such as RA, it also attacks healthy tissue, creating the well known inflammation associated with RA.
In my mind Rheumatoid Arthritis should not have the word ‘arthritis’ in its name. It is a systemic illness involving other parts of the body, as well as the joints. In some quarters it is known as Rheumatoid Disease, and personally I prefer this. But that’s just me being awkward!
How it affects me
I have pain in almost all my joints, some a lot more severe that others, and to varying degrees. Sometimes certain joints are worse, and then another time it will be different joints that cause me the most annoyance.
I have pain in every muscle in my body. I literally hurt all over. They are also all ‘stiff’, and at its worse, it’s as if I have semi cramp all over. I assume this is caused by inflammation.
I don’t have the strength in my muscles I once had (and no it’s not old age!)
The constant severe inflammation in my wrists appears to have caused carpel tunnel syndrome in both hands.
Practically it means I can’t turn taps off properly. I have to lift a kettle or saucepan with 2 hands as I am liable to drop it (I don’t always have as tight a grip as my brain tells me that I do). I have to use my upper arms and shoulders to lift myself out of a bath (extremely painful as the RA is in them too of course). I can’t kneel down at all as the pain is unbearable. Stairs are a pain in the neck (and the knees and the rest of the body) as on a bad day I have to drag myself up via the banister. I have to lift myself off of and out of chairs, which is very painful. I can’t start my petrol lawnmower, chainsaw, brush-cutter etc anymore, (I have had to buy namby pamby electric or battery versions). I am often exhausted just sweeping one room, and then of course bending to use the dustpan and brush is extremely painful (which means I use avoidance and the house is not always as spick and span as it should be). And as for dating… what guy wants to date a woman who can barely do steps or stairs and who has to lift herself out of a chair in a restaurant !
Having said that, to the best of my ability I do not let it stop me doing anything. And I never will.
Additional Info - In early 2010 I was also diagnosed with Fibromyalgia, which explained a lot of the strange things I had been complaining of. It was also confirmed that I had some damage from Osteoarthritis, probably due to damage as a child, and the joints not wearing normally as an adult.
It is now, as a 48 year old woman, that total acceptance is impossible. If I totally accept it then I am letting it have its wicked way. And as long as I fight it, it will never win. I feel very strongly about this, as positive thought begets positive action.
RA is an auto immune disease. This is where the body’s auto immune system attacks the body’s own tissues, in the case of RA primarily the joints and the tissues surrounding them, and in some cases other organs of the body.
Your immune system normally hunts down and then kills off all invaders in your body, such as infections and such. With an auto immune disease such as RA, it also attacks healthy tissue, creating the well known inflammation associated with RA.
In my mind Rheumatoid Arthritis should not have the word ‘arthritis’ in its name. It is a systemic illness involving other parts of the body, as well as the joints. In some quarters it is known as Rheumatoid Disease, and personally I prefer this. But that’s just me being awkward!
How it affects me
I have pain in almost all my joints, some a lot more severe that others, and to varying degrees. Sometimes certain joints are worse, and then another time it will be different joints that cause me the most annoyance.
I have pain in every muscle in my body. I literally hurt all over. They are also all ‘stiff’, and at its worse, it’s as if I have semi cramp all over. I assume this is caused by inflammation.
I don’t have the strength in my muscles I once had (and no it’s not old age!)
The constant severe inflammation in my wrists appears to have caused carpel tunnel syndrome in both hands.
Practically it means I can’t turn taps off properly. I have to lift a kettle or saucepan with 2 hands as I am liable to drop it (I don’t always have as tight a grip as my brain tells me that I do). I have to use my upper arms and shoulders to lift myself out of a bath (extremely painful as the RA is in them too of course). I can’t kneel down at all as the pain is unbearable. Stairs are a pain in the neck (and the knees and the rest of the body) as on a bad day I have to drag myself up via the banister. I have to lift myself off of and out of chairs, which is very painful. I can’t start my petrol lawnmower, chainsaw, brush-cutter etc anymore, (I have had to buy namby pamby electric or battery versions). I am often exhausted just sweeping one room, and then of course bending to use the dustpan and brush is extremely painful (which means I use avoidance and the house is not always as spick and span as it should be). And as for dating… what guy wants to date a woman who can barely do steps or stairs and who has to lift herself out of a chair in a restaurant !
Having said that, to the best of my ability I do not let it stop me doing anything. And I never will.
Additional Info - In early 2010 I was also diagnosed with Fibromyalgia, which explained a lot of the strange things I had been complaining of. It was also confirmed that I had some damage from Osteoarthritis, probably due to damage as a child, and the joints not wearing normally as an adult.
18 August 2009
Welcome
Welcome to my very first post on my new blog - Living with Rheumatoid Arthritis in Ireland.
I intend to make this not only a record of my experiences of the disease, but a source of information, a place for sharing and a haven for people who feel isolated in their difficulties.
I hope to post a minimum of twice a week, maybe more. I want to make this a fun place, as well as an information and ideas place.
Many thanks for visiting and I hope that you come again as often as you wish.
Please say hello, either by comment or email. I would like for this to be an interactive blog as much as possible. To make that possible I am happy to post peoples experiences and ideas, but I will always research things myself prior to posting to ensure a fair and accurate blog.
Happy reading !
I intend to make this not only a record of my experiences of the disease, but a source of information, a place for sharing and a haven for people who feel isolated in their difficulties.
I hope to post a minimum of twice a week, maybe more. I want to make this a fun place, as well as an information and ideas place.
Many thanks for visiting and I hope that you come again as often as you wish.
Please say hello, either by comment or email. I would like for this to be an interactive blog as much as possible. To make that possible I am happy to post peoples experiences and ideas, but I will always research things myself prior to posting to ensure a fair and accurate blog.
Happy reading !
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