Fatigue, coping and other things…

Fatigue, tiredness that doesn’t go away when you rest/sleep/sit down.

Pain doesn’t annoy me as much as fatigue, being tired all the time is no fun. Mostly because it stops you doing all the things you want to do. This Stene Prize submission is a short article describing life with the fatigue of psoriatic arthritis. I liked it because the author is a woman with children, so I can relate to it. The whole article is worth a read, but this quote struck me as being particularly apt.

“In my opinion coping is a short-term strategy and arthritis is a life-long disease.”

In another related article the author (Sharon Kilty) says:

“I have often heard people say that despite their arthritis they go on fighting and pushing themselves as giving up would be wrong and a sign of failure…All I can say is time does heal, you are not alone and making your arthritis your friend and working with it is a lot less tiring than fighting it all the way.“

I think I agree with this way of thinking. I could fight this forever more and still not “win”. Why set yourself up to fail?  I might find a combination of drugs that help, I might not. For the past 20 years I’ve had pain in my feet and trouble walking, not one of the suggestions by consultants, GP’s or physios helped.  That’s not to say they don’t help other people or that they weren’t worth trying, but I think you can miss out on a lot of life by searching for that elusive cure.

I think I need to consider this quote in more depth

“the person’s experience of living with their disease, in all dimensions, physically, emotionally, mentally, spiritually and socially.”

How do I feel about arthritis?

1) Physically e.g. it hurts, I can take pain killers or a hot bath, I can go to bed early or make something easy for dinner. I can let the housework go. I can wear comfortable shoes and sit down when I’ve had enough.  The physical side of things is pretty easy to get your head around.

2) Emotionally – The constant fatigue gets me down. I don’t like being a burden, asking my husband to do more when he’s already tired form a full time job.

3) Mentally. Is this different from emotionally?  I’m not sure?  Is arthritis something “I fight” or something “I live with”. Does it define me as a person?  Well, if you’re reading this blog, I’m sure you think it does, but then again, maybe this blog is an outlet, if I whinge about it here,  I don’t have to whinge about it in real-life, to my family or friends.

4) Spiritually.

*

Do I feel like I’ve been given arthritis? No.

Do I think some creator God is punishing me? No.

Do I feel like I’m being punished for deeds done in a past life. No!

Do I feel like this experience is supposed to shape me and make me a “better person”. No.

*

I believe in evolution by natural selection. Evolution depends on random chance mutations.  Somewhere in my family a random chance mutation arose that means some of us get psoriasis and some of us get psoriatic arthritis.  It just happens. My eyes are green. I don’t blame God for that. He didn’t give me green eyes. Green eyes have evolved over centuries and by chance and my genetic inheritance I have them.  The same is true for the arthritis, it just happened.  Shit happens. It’s not part of some master plan.  This is what I believe. I don’t expect others to agree with me.

What I like about Quakers is that you are allowed to explore your own beliefs and experiences and compare them with others. I’ve always believed that I have a questioning mind, which doesn’t do too well when asked to believe things “on faith”. If there is such a thing as a creator God, then he gave me this mind, so I can only assume I’m supposed to use it. Therefore I believe that arthritis just happened, I’ve not been chosen to “suffer” and my life hasn’t been mapped out for me.

5) Socially.  How do I feel about arthritis socially?  For me this is the hardest one to deal with. I try to hid it. I always have. It is how I operate. It almost feels like an ingrained, in built mechanism for living. I don’t want sympathy. If no one knows I have arthritis then I don’t have to deal with other peoples attitudes, assumptions and bl**dy stupid comments (Have you tried fish oil?  You need to do more exercise. You can’t let it rule your life…)

Socially, arthritis definitely affects my social life and has done for a very long time.  How long can you stand at a party/in a pub without sitting down?  How long can you dance at a ceilidh or a nightclub? If you want to drink you need to get the bus/train?  How far is the train station?  How long can you stand and wait for a bus?  How exhausted are you after a week at work? Do you even have the energy to be social?  What about those “comfortable” shoes, they hardly look good when you are dressed up for a night out? Using a walking stick would help, but what if someone saw me?  What would I say?

I think I need to give some serious thought to these things at Quakers, or as Quakers would say I need to consider these issues “in the light”.  I need to think about these things in a non-judging manner, to see what is the best way of living my life, for me.

This also ties into the ideas behind “Breathworks“, I recently read a book by one of the founders, “Living Well with Pain and Illness“, I’ll write a review on it, when I get a chance.

Sharon Kilty’s website reminds me of another quote from Flake HQ (written by a guy with both psoriasis and psoriatic arthritis)

“The derm I’m seeing these days said to me early on-with refreshing forthrightness- that he could prescribe ever more dangerous treatments, but opting for them would be my call“

It’s my body, for better or for worse, so ultimately I need to decide what risks and treatments are acceptable to me.

Quakers in the News

There are lots of stories in the news today about Quakers “allowing” same-sex marriages.  You don’t often read about Quakers in the mainstream press, although I’m not sure the focus entirely on same-sex marriages is a good thing.

Anyway when I looked into the story in more detail, I found lots of general information on the British Yearly Meeting website and this link to an article in the Guardian. There is a lot of discussion at the end of the article on whether Quakerism is any different to other forms of religion, which is worth a read.

Psoriatic arthritis in my hands

For the past 6 months or so, I’ve been bothered with pain and stiffness in my finger joints. In Novemeber 2008 the 4th finger on my right hand became fat, swollen, red and very very tender. It was hard to sleep because  even turning over was painful. Since then a similar thing has happened to the 5th finger and the middle finger on my left hand.

Just now (touch wood), they are stiff but only hurt if I bang into something. I can’t bend them properly or straighten them and it’s getting harder to grip things (like jar lids), but I can still type, obviously, as I am typing this.

I’ll post up these pictures, in case they help someone else looking for a diagnosis, it also means I’ll have a point of comparison to look back on. Don’t use this picture on your website (or anywhere else) without emailing me and asking my permission.

A hospital appointment

Well, I have an appointment to see a rheumatologist, less than 4 weeks after my last GP appointment, I am amazed! Well, it was 8 months ago that I first went to my GP, but you know, this is the NHS I was fully expecting to wait another 3-4  months.

I feel like crap today, I ache all over, especially my neck. I don’t know if it’s

a) the arthritis

b) I’m coming down with a cold

c) I just slept funny.

How do you tell? I’ve taken some paracetemol and I’m hoping I feel better soon, hopefully the kids will enjoy some extra tv time because that is all I’m fit for today.

Psoriatic Arthritis, blood tests and x-rays.

Well my blood test results are back, everything looks normal, which is good. CRP (C reactive peptide), is a general marker of inflammation, which can rise when you have an inflammatory arthritis. My value is less than 10. Anything from 10-150 can indicate an arthritis flare (although that is not true for everyone, some people can have a severe flare that doesn’t show in their blood work). Sometimes inflammatory arthritis can cause an increase in your white blood cell count and again there is no sign of that. Some people with chronic diseases like rheumatoid and psoriatic arthritis can develop anemia and fortunately my haemoglobin (Hb.) is now back to normal. I think I will keep taking the spatone.

That’s all good news on the blood front, unfortunately the x-rays did show signs of psoriatic arthritis. It can take several years before psoriatic arthritis causes damage that can be seen on x-rays.  See the webpage from “Learning Radiology” 0r the University of Washington MSK Resident Projects for the technical details.

How do I feel about all this. I’m not sure? I’m glad my bloodwork looks normal (even if I feel crap.)  I’m glad I’m not anaemic but if I’m not, then there must be another reason why I’m feeling so exhausted. I’m a bit disappointed that they can already see changes on the x-rays but there’s not much I can do about that. Oh well. That’s life,I just need to get my head around it.

Anaemia and Arthritis

	Iron Deficiency	B12 Deficiency Pernicious Anaemia	Anaemia of Chronic Disease
RBC Size	Microcytic	Macrocytic	Normocytic
MCV (82-99)	Decreased	Increased	Normal
MCH (27-32)	Low	Normal or High	Normal
TIBC	High	Normal	Normal or Low
Ferritin (10-291)	Low	High	Normal  or High
B12 (130-700)	Normal	Low	Normal
Folate (200-650)	Normal	Normal	Normal
RBC (4-5)	Low	Low	Low
Hb (12-16)	Low	Low	Low

I am waiting on the results of some blood tests. My previous blood results showed I was anaemic and I was prescribed iron tablets. I’ve been doing a bit of research into anaemia and there are lots of different types. In all types of anaemia your red blood cell and haemoglobin (the bit inside your red blood cells that is made with iron) are low.

The most common one that most people have heard of is, iron deficiency anaemia, this is the one that is helped by iron pills (or by eating lots of black pudding and chocolate, yum!). From what I can gather, if your red blood cells look small down the microscope, the volume of your red blood cells is small. Your iron stores (ferritin) are low, your mean cell (MCH) haemoglobin is low but your total iron binding protein is high then you probably have iron deficiency anaemia (assuming your B12 and folate levels are normal).

Another type of anaemia is pernicious anaemia, which is caused by your bodies inability to absorb the vitamin B12. This type of anaemia is not cured by taking iron pills, you need to have B12 injections (roughly every 3 months). To be diagnosed with this you need to have low levels of B12 and high levels of iron stores (ferritin), your red cells will also look bigger than normal down the microscope. Unlike iron deficiency anaemia your total iron binding protein will be normal and so will your mean cell haemoglobin.

There is another type of anaemia, related to inflammatory conditions like psoriatic and rheumatoid arthritis, this is caused by high (untreated) levels of inflammation in your body. It is quite hard to tell it apart from iron deficiency anaemia (and some people can have both at the same time). If you are anaemic and you have an inflammatory condition and all your other blood results are normal you probably have an “anaemia of chronic disease”. Sometimes people with high inflammation do show a raised ferritin level, but if the B12 level is normal then this isn’t caused by pernicious anaemia. Anaemia of chronic disease improves when the underlying condition is treated and doesn’t improve with iron tablets.

Interestingly pernicious anaemia can be an autoimmune disease (like psoriatic arthritis, rheumatoid arthritis and thyroid problems).  If you have one autoimmune disease you are more likely to get another. My Grandmother had pernicious anaemia and an underactive thyroid which is why I did a bit more research into anaemia and psoriatic arthritis. Hopefully I’m just tired and anaemic because of the psoriatic arthritis and not because I have something else wrong with me!

I like to learn things by looking at pictures, so I also drew the table at the top with some diagrams, which help me remember the important points.  I still forget what questions to ask when I see my GP though!

Information from

http://en.wikipedia.org/wiki/Total_iron-binding_capacity

http://www.nursingtimes.net/nursing-practice-clinical-research/laboratory-diagnosis-and-investigation-of-anaemia/203856.article

http://www.aafp.org/afp/20030301/979.pdf

http://www.arc.org.uk/arthinfo/patpubs/6269/6269.asp

Pathophysiology By Carie Ann Braun, Cindy Miller Anderson (Pg 398) (found using google books searching for folate, iron deficiency anemia)

The reference ranges given in the table are from a UK NHS hospital and apply to females.

There is more than one sort of arthritis?

Is there more than one sort of arthritis?  Oh yes, about 100-200 different types (you can check out a list on Wikipediea Arthritis – Wikipedia) The first one most people think of is:

*

1) Osteoarthritis (OA) – this is caused by wear and tear on the joints, you tend to get it as you get older. Osteoarthritis is called a non-inflammatory arthritis. An inflammatory arthritis has inflammatory white blood cells in the joint fluid.  Osteoarthritis has no white blood cells in the joint fluid so is termed non-inflammatory.

Inflammation (a red and hot area of the body) is caused (or “mediated”) by the immune system.  White blood cells are a part (or “component”) of the immune system. There are about 30 different types of inflammatory arthritis.  The most common one is rheumatoid arthritis.

2) Rheumatoid Arthritis (RA) – an inflammatory arthritis, the bodies immune system attacks it’s own joints and causes pain, stiffness and often swelling. Most people (about 80%) with RA, have something called RF, Rhematoid Factor, in their blood.

3) Psoriatic Arthritis (PA) – another inflammatory (immune mediated) arthritis, this is the one I have (although some unlucky people can get several different types of arthritis at the same time).  Most people (about 85%) get the psoriasis (itchy flaky skin) first, but some people (15%) get sore joints before they have trouble with their skin. Most people with PA, don’t have RF (Rheumatoid Factor) in their blood.

Last time I had my blood checked, I did not have RF, which was a relief, although psoriatic arthritis can be severe, rheumatoid arthritis tends to be worse, so I was pleased that I “only” had PA and not RA. Hopefully it will stay that way.

The UK Arthritis Research Campaign produce  lots of different booklets on different types of arthritis. They are detailed and helpful and well worth a look if you want more information on a specific type of arthritis. Children can get arthritis too, not just young people.  In Scotland Arthritis Care run “Joint Potential” for young adults aged 16-25 years, there are places available on their courses now, click on the link if you are interested. Arthritis care also have a “Young People’s” section in their discussion forum.

The Testimonies – Do I tell the truth?

While searching for a better explanation of the testimonies, I discovered this website, which gives a general introduction to Quakers (mostly in the US and UK). It’s maybe not the most scholarly introduction and I’m not sure about the accuracy of some of the information, but I thought it was well written and easy to understand.

Quakers – encyclopedia article – Citizendium

Testimonies

In the Quaker faith, the word “testimony” is used to describe a “living truth within the human heart as it is acted out in everyday life.”[4] A testimony differs from a creed in that they are spiritually, inwardly governed by the individual and are not imposed upon the membership. They serve as basic guidelines to live by, with the flexibility to be interpreted by the individual “under the Light.”

* Testimony of Peace – This is the testimony that Quakers are most known for. It stems from their belief in human equality and their conviction that love is at the heart of existence. Quakers live this testimony by being actively involved in peace activism.
* Testimony of Simplicity – The call for simple living and resisting the temptation of material dependencies in order to maintain spiritual responsiveness.
* Testimony of Truth and Integrity – The belief that truth should be spoken in all aspects of life.
* Testimony of Equality – The belief that all humans are of equal spiritual worth. It rejects the social class hierarchy and encourages equal treatment in all areas for all human beings.

[4]  http://quakersfp.live.poptech.coop/qfp/chap23/23.11.html

I like the suggestion that the testimonies need to be “acted out in everyday life”. Which made me think about my previous post “Do you tell people you have arthritis“. No, I don’t, clearly I’m not speaking the truth in all aspects of life. Then again, realistically we don’t all go round with billboards on proclaiming the minutiae of our daily life’s. This is something I will need to think about some more. See, this blog has been useful already!

I started this blog to help me think more deeply about how my Quaker faith affects my everyday life.  I see blogs as a modern version of keeping a journal. As Jim Pym points out in his book “Listening to the Light“

Throughout their history Quakers have been great journal writers… Journal writing is not something from the past, and it is not just something that is recommended for a chosen talented few…Like the Quaker faith itself, it is there for anyone who feels attracted to it, as well as being a significant spiritual practice in its own right”.

So I am taking Mr Pym’s advice and starting a journal (of sorts).

I also think blogs are easy ways to jot down things you want to remember but are prone to forgetting.  It is easy to search a blog and find a phrase. I have a handwritten book of poems and quotes that are personal and meaningful to me, but can I find a specific poem or quote when I want it? No!  Hopefully the information I record here will be a bit easier to search (and I can always print it out, if I should feel the need).

What do Quakers believe?

What do Quakers believe? Well it depends on the Quaker!  How you live your life is more important than a written set of rules, Quakers have (about) 4 testimonies that they try and act on in every day life.

Quaker Testimonies

Peace – the one most people have heard of e.g. many Quakers were conscientious objectors to WWII or the Vietnam war.

Equality -treating people equally, e.g. not discriminating on the basis of gender, race, sexual orientation etc.  All very trendy now, but Quakers have been bearing witness to this for hundreds of years.

Simplicity – not using more than you need, this can be expanded to include the environment, i.e. not wasting the earths resources to support a materialistic lifestyle, again this viewpoint is becoming more trendy and mainstream.

Truth/Integrity – In 18th Century Britain Quakers were barred from entering University, so many become went into business. Several famous UK firms were started by Quakers including Cadburys, Rowantree’s and Clark’s. As employers these companies sought to treat their employees fairly, for example the creation of “Bournville” to house the factory workers at Cadbury’s in Birmingham.

That’s it, it’s not very complicated in theory, in practice it’s much harder. Some people focus their life’s on one particular aspect of the testimonies, e.g. campaigning for peace in Northern Ireland. Others find that at different points in their life’s the focus of their beliefs and actions changes. This is to be expected, there is no set rule for how you act out the testimonies in your own life. There is more information on the Quaker testimonies in wikipedia.

Do Quakers believe in the bible? Some (probably the majority) do, some don’t. Quakers are also encouraged to seek out the truth in other religious writings  (as well as the bible) which is something I like. It’s nice to learn about other peoples views, I’ve never really believed “I’m right, you’re all wrong and are going to burn in hell” view of religion. It’s not a very good basis for developing peaceful relationships, is it?

Do you tell people you have arthritis?

Do you tell people you have arthritis? No!  That’s the trouble with arthritis, young people think you are having them on (“what at your age? don’t be daft…”). Old people think you are exaggerating (“arthritis? wait until your my age then you’ll know what arthritis is…”) Or the one that irritates me most, “arthritis? oh, I had that, I took some fish oil, cleared it right up.”   AAARRGGH.

My parents, husband and brother know I have psoriatic arthritis, so do my five close friends that I’ve known since school.  Apart from that, the rest of my family and friends don’t know. The people in my home town don’t know and neither do my friends/Friends at my local Quaker meeting. Not yet anyway.  I may tell them at some point, but it’s not really something I want to post on Facebook (I know, I know I’m writing a blog on the internet, open for all to see…).

I can just imagine the status updates…What’s on your mind?

AmyM has a permanent crippling type of arthritis that can’t be cured (the pessimistic post)

or perhaps

AmyM has arthritis hopefully she’ll be right as rain when the pills kick in (the optimistic post)

Either way, probably not the best way to go about telling people. I think the reality is somewhere in between, I doubt any medication will be a magic “cure” but there are new drugs coming on the market all the time so the situation certainly isn’t hopeless. I don’t expect drugs will be the only option I’m going to have to make some “lifestyle changes” (that usually means giving up stuff you like) and I’m sure everyone will tell me how useful physio/Pilate’s/exercise/swimming etc is. I just need to find a combination of things that I enjoy and I will stick to. Easy in theory but so much harder in practice.

I have never, ever told my employers I have difficulty standing and walking. I used to work in a very competitive environment, any sign of “weakness” was taken as an indication that you “weren’t up to the job” or you “couldn’t cut it”. As of yet I don’t feel disabled. It’s certainly not a label I would use to describe myself so there is no way I’d tick the “do you have a disability or long term health condition box…” on an application form. Maybe my views on that will change in a few years time.

I think the reason I have a hard time telling people is that I don’t want any sympathy or special treatment. I’ve been able to hide the fact I can’t stand for long or walk very far from most people, most of the time.  The only real exceptions to that are the people I’ve lived with. Some days, after a long day at work the most I could do when I got home was make it from the front door to the sofa. Eating was an optional extra (even standing for long enough to make a sandwich was not an option). Under those circumstances even the most unobservant flatmate starts to twig that something isn’t quite right. Maybe it will be easier now I have a diagnosis? I think saying “my feet hurt because I have arthritis” will generate more sympathy than simply saying “my feet hurt”. It’s daft, because the pain is the same but people just like to have labels, I guess it helps them make sense of the world.

So how long have you had arthritis then?

A simple question?  How long have you had arthritis? Answer, I’m not sure. My GP diagnosed psoriatic arthritis, based on my swollen fingers and negative RF (rheumatoid factor) blood result in 2008. So that would mean I’ve only had arthritis for a few months.

I think I’ve had arthritis for 20 years, this is something I want to discuss with the specalist/consultant if and when I see him.  I have had “sore feet” for 20 years. I have seen many different GP’s and several consultants. The general consensus is that I have:

1) Achilles tendinitis, an inflammation of the tendon that joins the back of the heel to your leg/calf muscle

2) plantar fasciitis, an inflammation of the ligaments on the sole of your feet that joins your heel bone to your toe joints.

I’ve had both Achilles tendinitis and plantar fasciitis in both feet for twenty years, I never responded to any treatment (taping, heel lifts, calf stretches, strengthening exercises, ultrasound, shoe insoles, anti-inflammatories or night splints).  The only time the pain in my tendons has eased was when I was pregnant. Go figure!  Most people complain about getting sore feet when they are pregnant, I was quite literally gob smacked when I realised my feet were better when I was pregnant, because I thought they would be much, much worse.

I’m skinny, I always have been, but several doctors have been at pains to point out that if I gained weight it would put even more strain on my feet (which is why I assumed being pregnant would be a disaster, for my feet, at least   If I had been overweight I am quite sure that all my foot pains would have been blamed on that and I really feel for people who struggle to get a diagnosis because all aches and pains are blamed on their weight.

After both my children were born I suffered “a flare”,  this is when your psoriasis and arthritis gets a lot worse in a very short space of time. You feel like crap, it’s like having flu. You are physically shattered and it hurts to move. Even if you do sleep you still feel exhausted when you wake up. In both cases this lasted for several months. The only trouble was, I didn’t realise what was happening and put it down to trying to cope with the physical exhaustion and the sleepless nights that are part and parcel of living with a new born. I’m a bit of a slow learner, if I have any more kids hopefully I’ll be able to recognise a flare as it happen, not that there is much you can take drugs wise if you are breast feeding, but at least I won’t beat myself up about it and think that I am just a wimp or a bad mother.

So how long have I had arthritis? Well, I feel like I’ve been living with it for twenty years but I’ve only had a name for it for a few months. Does that make me a newbie or an old hand? I’ve got used to coping with my sore feet and the limitations that brings, now I just need to apply those lessons to other parts of my body.  Sounds simple doesn’t it?

Quakers – that’s some sort of cult isn’t it?

People have some strange ideas about Quakers. Some people think it’s some sort of cult. Nothing could be further from the truth, the whole idea of Quakerism is that you make up your own mind, based on your own experience. No brainwashing involved. Quakers are officially called the Religious Society of Friends, they are a Christian denomination that started about 300 years ago, in the UK.

There are a couple of other myths that I’ve come across.

1) You can’t be a Quaker, you don’t wear old fashioned clothes and a funny hat/bonnet.

A tiny minority of Quakers (mostly in the United States) do “dress plain” i.e. complete with bonnets and long skirts. Every Quaker I’ve ever met wears regular clothes. Some Quakers chose to wear clothes that are fairly traded, but there aren’t any set rules you have to follow.

2) You can’t be a Quaker, you drive a car/watch television/ use the internet…

Some people seem to confuse Quakers with the Amish. The Amish are a Christian denomination, in the US and Canada.  The confusion probably comes about because both the Amish and Quakers are known for simple living and non violence.  In some Amish communities this includes using horse drawn carriages and living without modern conveniences such as electricity. All the Quakers I know live in modern houses, some may choose not to run a car or watch television but modern conveniences are not in anyway forbidden.

Another reason for confusion between the Amish and Quakers is that there are a large number of Amish people (50,000) in Pennsylvania. Pennsylvania was, in colonial times known as “the Quaker province“. Quakers believe in religious freedom for everyone, which allowed the Amish communities to prosper in that region.

3) Quakers only eat porridge

Most people have seen the image of a quaker man on porridge oats. The Quaker cereal company have no ties with Quakers. In fact the Quaker logo is a good example of branding.  Quakers were thought to epitomise integrity, honesty and purity which the people at the oat company thought would be a good trademark, the quaker man logo was registered in 1877 and continues to be used by Quaker Oats to this day.

Personally I’m not a big fan of porridge, I know its good for you but I certainly wouldn’t eat it just because it has a picture of an 18th century quaker on the packet!

4) If you need to join a religous society just to make friends you must be really sad.

Hmm, I admit, I prefer the term Quaker to “Religious Society of Friends”, a religious society of friends does sound a bit sad. If you need to go to a religious society to make friends you must be a bit of a weirdo. I suppose I do think some Quakers are a bit weird, but just like any other group of people, be that a sports team, a choir, a church, a playgroup or the mates you meet up with in the pub it takes all sorts and the world would be dull if we were all the same.

Quakers refer to other Quakers as “Friends” (with a capital F) similar to the use of the word Deaf with a capital D in the deaf/Deaf community. It’s a bit odd at first, but you get use to it after awhile. Some older Quakers still use the Thee/Thou (meaning “you”) among Friends. Although I’ve only heard that once or twice.

Some of my good friends are Quakers, there are plenty of other Quakers that I know in passing but wouldn’t call them friends in the conventional sense.

5) Do you try and convert people?

Lord No!  I can think of nothing worse, the thought of:

a) trying to convert people or

b) listening to someone that wanted to convert me

Fills me with dread and horror. If you go to a Quaker meeting a few people will probably say hello, but they won’t start “bible-bashing”. The whole idea of Quakerism is that your “life speaks”. You don’t need to go round telling people you are a Quaker but you should be honest and fair with others, your whole life should be an example, not just what you do for an hour on a Sunday.

You mean, I could have met a Quaker and not even realised it?  Yep, very probably. If you want a slightly more sarcastic take on these questions check out Bob Loblaws Blog.

Psoriatic Arthritis

Arthritis is something old people get, right?  I wish!  Many old people have arthritis, but so do some young people, there are different types. All arthritis causes painful stiff joints. The one most people think of is osteoarthritis which you tend to get as you age.  The other one most people have heard of is rheumatoid arthritis (RA), it tends to affect younger people and can be very severe.  Few people have heard of psoriatic arthritis (PA).  Psoriasis is a skin disease, you get red itchy circles (or plaques) of skin that flake off. You tend to get it on your elbows and knees, although you can get it anywhere on your body. Psoriasis isn’t contagious.  You can’t catch it from someone.

About 10-20% of people with this flaky skin develop problems with their joints. I am one of them.  As I type this the 4th (ring) finger of my hand is swollen and a bit sore. At last, an excuse for my typos! The pinky finger on my right hand is going the same way. I’m left handed so this doesn’t bother my as much as you might think, but I’m starting to feel the same thing happening in the middle finger of my left hand and I’m not too chuffed about that.

My hands have been sore for about 6 months now. My GP has X-rayed my right hand and I’m waiting on the results. I don’t think the X-rays will show much, it can take years for the damage from psoriatic arthritis to show on X-rays, but I just need to be patient and wait for the results (not one of my strong points).

I’m also waiting on the result of some blood tests.  6 months ago, my GP test me for RF (Rheumatoid Factor), RF shows up in about 80% of people with rheumatoid arthritis, fortunately that was negative, which means I probably have psoriatic arthritis and not rheumatoid arthritis.  My GP has repeated that test and they are also checking the levels of the “inflammatory marker” CRP in my blood.

My GP seems to be quite through, he also ordered a full blood count, 6 months ago this showed I was anaemic so I’ll be interested to see if that’s still the case or if all the black pudding and spatone water I’ve been having have upped my iron levels. Apparently anaemia is not uncommon in people with inflammatory arthritis (both PA an RA are types of inflammatory arthritis) and it doesn’t always respond to iron tablets.

Hopefully in a week or two I’ll know what the results of these test are. There is not a specific test for psoriatic arthritis. I wish they would find one!  In fact, I wish I knew some lab somewhere was even trying to find one!

Hello world!

My first post, I’m not so sure about this theme, it’s a bit hard to read, but I like the picture of the girl.  I intend to keep a sporadic blog so I can keep track of my thoughts on two important themes in my life. Quakerism and Psoriatic arthritis, please don’t think that the two are directly related!

Not all quakers are arthritic and not everyone with psoriatic arthritis is a quaker

I quite like the name arthritic quaker, it makes me sound at least 90 years old and very wise when the truth of the matter is I’m 30 and in serious need of some wisdom…

I’ll be interested to see how this blog develops, will I mostly write about arthritis, or will I spend most of my time musing on Quakerism and how it applies to my life?  I don’t imagine too many posts will combine the two subjects, but you never know.

To read all posts follow this link

http://arthriticquaker.wordpress.com/

The arthritis posts are here

http://arthriticquaker.wordpress.com/category/psoriatic-arthritis/

The Quaker posts are here

http://arthriticquaker.wordpress.com/category/quaker/

Please feel free to leave comments if you wish.

PS I changed the theme with the girl, the text size was too small, the links were hard to read and any uploads really contrasted with the dark green background.