Home > Psoriatic Arthritis > “Arthritis at your age?”

“Arthritis at your age?”

I found this webpage while browsing “Arthritis at your age“, sadly the author of the book/site died this month.This section seemed a good summary, it was written about rheumatoid arthritis but could be applied to psoriatic arthritis:

Sociologist Carolyn L Wiener (University of California) analysed the socio-psychological aspects in an article, The Burden of Rheumatoid Arthritis: Tolerating the Uncertainty (Soc Sci & Med, Vol 9, Pergamon Press 1975).

“The variability of progression, severity and areas of involvement cannot be stressed enough. For example, an arthritic may have reduced mobility but no impairment of skill, reduced energy but no interference with mobility, reduced energy one day and renewed energy the next and so on. Loss of skill will remain fairly constant if it is caused by deformity, but it is variable if caused by swelling; the other resources, mobility and energy, can fluctuate. There is uncertainty about:

  1. whether there will be any pain, swelling or stiffness;
  2. the area of involvement;
  3. the intensity of the disability;
  4. whether the onset will be gradual or sudden;
  5. how long it will last;
  6. how frequently flare-ups will occur…”

http://www.dumville.org/aaya/chapter_12.html

I think the fact that my energy level can change, practically hourly is what is getting to me most, one day I can do a lot and feel almost “normal” the next I can hardly get out of bed and everything is a struggle, which then makes me feel guilty because I can’t even keep up with the house work, let alone my job or other responsibilities. Some other quotes that I can relate to are these:

“It’s not easy, sometimes, because I have good and bad days. I feel the pressure to be like other people — to run up a flight of stairs to get something, to reach something down from a shelf, to use a typewriter keyboard. So many little jobs, that others take for wanted, and don’t seem to realise I can’t do. How much of this pressure is deliberate I don’t really know.”

“Fit people (the ones with duodenal ulcers, varicose veins, or blood pressure but no outward manifestations of abnormality) find it difficult to be normal with the disabled. They are tense before they start. The first thing they want to know is, ‘What’s wrong?’ And then, ‘How long? Never! I thought…! My aunt…! Have you tried…? mud, codeine, turkish baths, vegetarianism, bee stings, cortisone, corks in the bed, real leather shoes, ACTH, REST, EXERCISE, PRAYER?’ When these questions have been answered, they relax and sometimes turn out to be quite nice people; just thought they were helping. “ (In Paul Hunt’s Stigma)

In Michael Leitch’s Living with Arthritis (Lennard/Collins) Phil echoed the worrying thoughts of many married people with RA:

“I was very concerned about my husband, and I think what I felt must be a fear with many women who have arthritis. He has always been very supportive, and I have been lucky in that respect; but in the early days I remember thinking; ‘What am I going to do if he leaves me?’ I didn’t want him to go — of course I didn’t — but if he had decided to leave us, I would have understood.

“The husband of someone with arthritis has a lot of pressure on him. He comes in the door after a long day at work and he does not know what he is going to find. It may be all right: she may have felt OK and been able to manage. But supposing she had had a bad day, which had been a real struggle to get through — what then? I can imagine husbands standing outside the door and thinking, What’s going to face me tonight?”

http://www.dumville.org/aaya/chapter_25.html

I like  the quotes from this  website because they go into detail, I was getting fed up with “leaflets” that had a paragraph saying

” you’ll feel angry (but don’t get too angry!) you’ll feel depressed (but don’t get too depressed!) etc etc”

Great, that doesn’t really help, life goes on, how do you deal with that?  A patronising blurb telling me it’s okay to cry and then get on with things is NOT what I need, I need some way of getting on with my life without feeling like I’m incapable or a failure. The “arthritis at your age” website lists a lot of autobiography’s, maybe I should try reading one of those.

I like the idea that managing peoples reactions and controlling how long you discuss arthritis is a skill that can be learnt.  You can learn to stay sitting in social situations and not feel self-conscious. I need to work on those skills!! A lot!

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Categories: Psoriatic Arthritis
  1. August 29, 2009 at 2:01 am

    A great blog ! I really enjoyed it . I also have arthritis. I feel alot of the same feeling.

  2. February 28, 2010 at 8:37 pm

    Rheumatic pains or arthritis after checked diarrhoea Abrotanum 30 or 200 4 hourly (6 Doses)

    • arthriticquaker
      May 15, 2010 at 8:55 pm

      Are you trying to sell me something? If so you’re not doing very well!

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