Posts Tagged ‘treatments’

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.