January 19, 2010

Living with RA

When we say we can’t do something because we don’t feel well, put yourself in our shoes by using the examples of our symptoms below…

Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot every time we do our shot.

Side Effects from the Shots: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

Painful Nodules or lumps of tissue under the skin: Put equal or unequal amounts of small pebbles in each shoe then take a walk; if we are mad at you we would prefer needles to pebbles.

Weakness: Apply Tightly 10 kg ankle weights and 10 kg thigh weights then take a 5 kilometer walk, clean the house, go shopping and then sit down – how ya’ feeling now?

Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzz.

Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

Limited Range Of Motion: Put on 6 or 7 layers of clothes, extra thick gloves and a heavy coat and try doing daily tasks, opening your medicine bottle, grasping a fork, combing hair, buttoning a shirt. How’s that working for ya’?

Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare RA fatigue to you being tired from only a few hours of sleep – it’s not the same at all.

Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.

Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

Vision Problems (Corneal Edema): Smear Vaseline on glasses and then wear them to read the newspaper.

Hoarseness: yell at the top of your lungs for hours. How are them golden pipes doing?

Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

Fear: Dream that you have lost complete feeling in your hands or feet and when you wake up wiggle your hands and feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.

Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 1°c outside and 20°c inside. Light a fire for the fireplace and then get into it. Once you have reached about 45°c tell me how you feel, even a person without RA would feel bad, now add all of the above symptoms.

Welcome to our world.

Then Finally…
After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.

This may sound harsh or exaggerated, but trust me when I say that it’s all true. RA is most times an ‘invisible’ disease because a lot of us with RA can walk around looking like we’re ok! What you don’t see are the rough times spent at home, alone, when we have flare ups, causing us the most pain. The next time you see someone with a chronic illness and see them smiling, just remember that they’re probably dealing with a whole lot more than the eye can see…and let them know that you care!


Marcia said...

Well said Nat. What's that saying, don't judge a book by its cover?

Is it okay though, if I don't try out some of your suggestions?

:) Marcia

Treesa said...

Hey nat thanks for sharing yourself with us...I dont know how u can cope with that everyday...no body can understand what ur going through unless they too have been through it...I find it really helpful when people are honest about what they are going through...lets face it we all like to think we r super woman but thats not realistic (i have to keep reminding myself that one)
i was a little judgemental of people with dif illnesses until last year...i was struck with severe panic disorder and depression (diognosed after 10 different doctors and my own research and phone calling)and then had a severe reaction to a medication and went for little trip to another planet for a few months! i had hullucinations, hot flushes, tremors, feeling like i was going to die, severe head pain and body aches, major adreniline rushes, heart pulpitations almost hospitalized on a few ocassions...and i woke up with severe anxiety and went to bed with it...then i become highly dependant on the anti anxiety drug i have never struggle so much just to get out of bed but i had to look after my two little ones... if i didnt have my husband and mum here to help i would have killed myself...
thank fully im doing a lot better not on anti anxiety meds anymore new depresion medication, seeing a shrink..exercise u know but each day is a struggle but im determined to fight it!!!!!! hope u dont mind me sharing...
Dont ever give up Nat! we are a lot stronger than we realize! luv n hugs Treez xx

Kathie said...

sorry to hear that things are unsettled Nat you are in my thoughts

Taryn said...

Thanks for sharing, Nat. My little boy has JIA, and sometimes I feel like doing all of the above to myself just so that I can fully understand what he is going through. It's so true what you said about being an invisible disease. People see Will running around and playing with the other kids, and think that I am making it all up (that he has JIA and how it affects him). They don't know what he goes through just so that he can be a kid.

Julene Matthews said...

I too have Ra and laughed at your description.It is so true.