But, you look so well…

Yesterday was World Arthritis Day and @RosieCosy sent me this link to a really good demonstration on how it is to live with arthritis for a day

However, arthritis doesn’t happen overnight, you don’t just go to sleep and wake up in the “body suit”.  It  is a slow, debilitating illness which can take months or years to develop enough for a diagnosis to be made, as so many people find out.

Mine started in my right hand, around 6 years ago when I was living in Spain. I put it down firstly to the stress of moving, then to too much driving and cleaning, our house had 23 rooms!  My right hand aches, I can feel it right down to my bones, sometimes the ache travels up my arm. I have even felt the same dull ache in my eyes.  It has never deteriorated though, I have bad days with it when I can’t use it and have it wrapped up to try to ease the pain but in general, I cope well with it.

A year ago next week I first saw a Rheumatologist about it, having been referred by my GP.  She ordered full bone scans which did not show any arthritis in my hand but did pick it up in my right toe, which had been painful but I assumed it was just one of those things, as you do…  The toe took until February to stiffen, finally locking itself completely around June.

A year on, I am now walking with a stick, yes, I took “the Secret” out this week after so much Twitter support..  I was amazed at the difference it made, not just to my mobility but to the way I was treated by others. Suddenly, I was disabled in their eyes. I was offered help, doors opened for me, people started unnecessary conversations, maybe to prove they’re not disablist?  Who knows.. It was eye-opening though.

Once I have my operations, I probably wont need the Secret but I will still be suffering from an invisible condition. Just because you cannot see illness, does not mean it doesn’t exist..

Please raise awareness for invisible illness when you can.  If you have a story you would like me to add to this page, please give me a nudge : )

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9 Comments

  1. I’d say he definitely should consider meds now rather than later. Joint damage can’t be repaired and most drugs are better taken earlier rather than later as they tend to be far more effective taken earlier in the disease. It’s not just joint damage either. Inflammatory arthritis increases the chance of cardiovascular disease because of the systemic inflammation.

  2. My son had chronic arthritis at 10 when his immune system attacked him. He is now 23 works as plumber + tries to ignore it….in denial. His feet are bad at the mo. He refuses to take any meds as he thinks he will save them for later. Ive bought him some special boots because I want his feet to be warm this winter. He is so brave and youd never guess so its reassuring to read your blog. Like you he uses humor to laugh away the pain. Thanx for being an inspiration.

    • Oh, poor lad.. some meds can halt the progression tho :*( Also, has he seen a podiatrist? There might be something that can be done now to save his feet. Mine have been left too long now, I need surgery on both but had I had appropriate treatment sooner, that may have been preventable, or at least delayed.

      Best wishes to both of you xxx

  3. Two of my three sons have hearing loss. The six year old now wears hearing aids, but his long hair covers them, the three year old won’t keep his in.
    Even though one primary school teacher knew he had hearing loss, she claimed at one parents evening “he just doesn’t listen!”… I couldn’t help but smirk.
    I remember reading another mum claiming of her profoundly deaf son she sometimes used to wish he had a physically obvious disability like blindness or no legs so that people would not just assume he was rude, ignorant, stupid. He was deaf, but to everyone else he was just a moron who couldn’t speak properly, wouldn’t talk to them when they spoke to his back and didn’t move in queues when asked from behind.
    I must admit, I never read your blog before MHC, until the letter of support you did for Manic, but I’m pleased I do now read it for my own enjoyment.
    You’re raising important issues not just for yourself, but for a whole swathe of people who are very often ignored by the abled-masses.
    Peace and love to you and yours from me and mine.

  4. My dear, you have my admiration, my support and my prayers that you will get your operation and that it will improve the quality of your life. I have been told that I have degenerative arthritis of the spine and I must admit that it does bother me on occasion.

    Your friend,
    Dave (mrdatman.wordpress.com)

  5. Mine flares up increasingly so. The pain at times is excruciating. A kind pensioner is whittling me a sturdy walking aid. Doctors just want to drug me which stops me from working so I have wheat bags and ice bags alternately to ease it. I get by. I hope your operation goes well my friend xxx

  6. The highly debilitating and very common symptom of arthritis that you rarely hear about is fatigue. I don’t think people really understand how incredibly disabling the fatigue aspect of arthritis can be. When I attended a course called Challenging Arthritis, run by Arthritis Care, the students had a diverse range of rhuematological conditions, yet a across the board fatigue came up as a consistant problem for everyone there.


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