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Posts Tagged ‘coping’

Feeling Better?

December 31, 2009 2 comments

I haven’t posted much this month, partly because it’s December and I’ve been busy and partly because I am feeling better.  Yes, that’s right, I don’t want to jinx it by writing it down but I am feeling better.

The bone-crushing fatigue I’ve had for almost all of 2009 seems to have lifted, I’m no longer struggling to sit and stand by lunchtime. I can get my work done in the evening and manage housework at the weekend.

None of my joints are too bad either, my ankle still isn’t great and the snow and ice have made it clear how much range of motion I’ve lost in that joint since it started flaring up several months ago, but it’s not screaming agony to walk down the stairs and that has to be a good thing.

The other reason I think I’m feeling so well is I’ve just had an appointment with the rheumatologist, and I always seem to make a miraculous recovery about 2 days before I visit the doctors. Anyway, I trudged through the snow, for a 5 minute consultation that consisted of “yes, you seem to be doing better, come back in 6 months”.  6 months is an improvement on 3 months, lets hope none of my other joints flare up in the mean time.

I think that is the trouble with this disease, it’s so unpredictable. I am constantly waiting for another joint to flare up and give me trouble and based on past experience that will happen again.  I also know that the fatigue could flare up again any time and if anything, I find that thought more depressing.  Fatigue screws up your life, I don’t care what anyone says about pacing and finding your limits.  At the end of the day, if you can’t do what you want to do (and often HAVE) to do in a day then it’s frustrating and depressing however much you “pace” or “goal set”.  When that fatigue goes on for months it’s very hard to keep up any semblance of a normal life.

Anyway, enough moaning. Here’s hoping 2010 is a good one.

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Walking sticks, canes etc

November 14, 2009 Leave a comment

So back to the present moment of today, I once again have to get used to the laser vision stares that come my way as I walk down the street. A seemingly healthy guy with a cane just seems to draw a lot of eyes. For some reason, strangers always feel the need to ask me what sport I was playing when I got my “injury”. Uh, I got into a cage match with my immune system, and my immune system seems to have won. I am tired of pretending to be a soccer player, but they always seem to like that response and leave happy. (I used to answer by saying that I had rheumatoid arthritis, but that never seemed to work — too many blank stares, and too many comments on my age.) I was once even asked if I had gotten hurt while mountain climbing. How adventurous of me, no?

RA Guy – On Becoming Visible

Okay, I know I have “disclosure issues”. i.e. I don’t like telling people I have arthritis because, quite frankly it’s none of their business.  I don’t want their sympathy and I don’t want their crappy fish oil/no tomato/no potato cures.

So I can really relate to this post “on becoming visible”, I have used a walking stick in the past, I have a couple. I started of with a nicely carved solid wood one. It really helped, I was in a lot less pain, for about a week. Trouble was, I was putting so much weight through the stick that my hand shoulder etc started to hurt and I quickly realised that I would rather have sore feet than a sore hand. What I couldn’t cope with were the “laser vision stares”. I would rather be in pain. Vain but true.

A few years on I got a different stick, more of a hiking pole, but with a nice comfy handle. It also had a bit of a spring in it so it was easeir on my hand/arm. It was still a stick.  Young people, who look fit and healthy with a cane attract stares.  Everyone is trying to work out “what is wrong with you”, if you look to be walking okay (maybe becuase you’ve just left the house but you know you’ve got an hours shopping to do). people assume you are “faking it” or “attention seeking”.

The other thing that nobody gets is that with arthritis you can be up and down faster than a bloody yo-yo.  I can need a stick one week and not the next.  This does no mean I am “getting better”. Using a stick does not mean I am “getting worse”.  No one understands flares until they live with them. For me, it’s easier to put up with the pain than face other peoples judgment. For now anyway, I don’t know what I’ll do when I can’t lean on the pushchair!!

 

Parenting and arthritis

November 14, 2009 Leave a comment

This was in a post on the excellent RA guys website:

They don’t want their momma to feel pain and when I do, they feel insecure and uncertain about how to rescue me.

This was in the comments section, it made me think

It is going on two years for me with my journey with RA and Fibromyalgia. My older son is nine and a half and the baby turns a year old next month. The hardest part for me is dealing with the fact that the baby will never have the same mother that my nine year old had.

This also made me wonder whether I am strong enough to conquer anything and everything. Am I, as a parent, required to be unbreakable or always be confident about myself, about my parenting skills and about preparing my children for the world? I guess the answer to that is that we are all learning as we go.

http://www.rheumatoidarthritisguy.com/2009/08/parenting-ra/

I can understand that kids find uncertainty frightening so I can understand hiding your arthritis from them as much as possible.  I can also understand the need to be open and honest with your kids without scaring them. A difficult balancing act.

As this post points out, it’s not the pain itself that is frightening, it’s not knowing what to do that is scary. So if the pain is bad giving the kids a task like getting a wheat pack or a glass of water (something/anything) is better and less frightening for them, because then they have something useful to do.

How much do you want to let your kids know?  How much are your kids going to tell their friends/friends parents/teachers?  How much can you ask of your kids? How many chores are too many? (or not enough!).