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Ugh, I am so tired. Fatigue and psoriatic arthritis

The title says it all. I feel so tired. I ache. My arms and legs feel like lead. The worst time is between 4-6pm. Even if I lie down for half an hour at 3pm, I still struggle to get dinner ready, entertain the kids and get tided up afterwards. I wish there was a drug I could take to make me feel less tired.

WebMD has 10 tips to fight psoriatic arthritis fatigue, there are some good suggestions but I still don’t know how to get through the evening meal/bed routine.

1 Change your schedule – well I used to work a full time job and a part-time one on top, now I just look after the kids and work from home.  There’s not much more I can cut out!

2 Get enough sleep – I usually take 30 minutes to 1 hour to fall asleep, I always have, once I am asleep I sleep through, I could try going to bed earlier, but then I’d lose the little free time I do have. I am definitely getting a good 6-7 hours sleep a night, so I’m not complaining, long may it continue.

3 Excercise 30 minutes a day -well, we have two dogs, I walk them twice a day (my husband walks them first thing) so I am getting excercise.  Anyone who has two toddlers will know that you don’t spend much time sitting still.

4 Prioritize – Playing with the kids is more important than housework.  Yep, no arguments there, as long as my house isn’t a health hazard I’m not too bothered .

5 Seek Support – So far I’ve online done this online, checking out the National Psoriasis Forums (http://talkpsoriasis.org) and Arthritis Care Forums, both  have loads of information and a supportive community. I think that most of the local groups are likely to be full of 60-80 year olds and I’d feel quite out of place.

6 Treat depression – My life is good, I don’t feel depressed, just tired. I always feel happier when it’s sunny though, maybe I should try some vitamin D supplements?

7 Eat Right- I do enjoy food and I don’t want my children eating crap, so we do eat three meals a day, very little of what we eat is processed. I’ve heard that potatoes and tomatoes can make arthritis worse, but I like potatoes and tomatoes and I don’t want to cut them out of my diet.  I did try and avoid tomatoes for a while, do you know how many things contain tomatoes?  A lot more than I realised!

8 Support your joints – Use braces and supportive footwear when your joint are inflammed. I always wear MBT shoes, they are one of the few things that help, although my last pair have worn out a lot quicker than any of my previous pairs, I might look for other shoes with rocking soles when I need to replace them, MBTs are too expensive.

9 Do something you enjoy. – Well, I like to play the flute, I still can, even with my swollen fingers, I’m glad I don’t make my living with music, or I’d be in real trouble. I usually pay for it the next day my fingers are ofter more red and painful. Maybe I should find a more “arthritis freindly” hobby. I probably only have time to do fun stuff once or twice a week, it’s hard when the kids are so little, I don’t get much time to myself.

10 Streess Reduction – I do have a breathworks relaxation CD that I use once or twice a month, maybe I should use it more often.  I also have a CD by Jon Kabat Zinn. I really appreciate the time I spend at Quakers, but I know I need to make more time for daily silence. So easy in theory, so hard in practice!

Well, lots of ideas, but I don’t think I’m any further forward in coping with the tiredness. I’m waiting on the results of more blood tests to rule out anemia and thyroid problems, but last time these were checked they were fine, so I do think the tiredness is down to the psoriatic arthritis. I wish I could figure this one out, maybe I just need to accept that this is how my life will be, at least until I start on the DMARDs.

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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.