Reflecting Allowed

Maha Bali’s blog about education

Shake Gently, Love. Or Mind the Handshake

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Ok in my head the blogpost title follows the Speak Softly, Love song. Maybe mind the Handshake is cooler coz I’ll be in London? Dunno ๐Ÿ™‚

I’m on my way to two events, a DMLL Visiting fellowship with at Coventry University and OER18 (one day of it) inshallah.

I’m worried about the toll of trip on my body for the first time in my life. I’m the one who went to Rome and back in one day to meet Jim Groom and give a workshop with him at an AMICAL conference. I am the one who, after arriving from long haul trips have jumped right into friends’ weddings within hours of landing.

This time is different. I am traveling for the first time as someone currently going through a flare up of rheumatoid arthritis (family with me on airplane, friends with me on some train rides). I was kind of diagnosed a week ago (undifferentiated arthritis that is probably early stage rheumatoid) but today my doctor confirmed, based on self-reported pain escalation despite meds, that I officially have rheumatoid arthritis (an autoimmune disease that involves inflammation of the joints). I have most of the clinical symptoms but none of the lab tests, but that’s not unusual esp for early stage. Kudos to my mom and husband (doctors not specialized in this) for recognizing this for what it was as soon as I mentioned my main symptom (a weird pain I had for 3 months on both index fingers that feels like a twisted/sprained ankle without injury causing it… I had not mentioned it before because I did not know how to explain or describe and I just tolerated it..until pain became debilitating and I could no longer function fully).

My fingers and wrists are most affected. The following things hurt A LOT

  1. When my kid holds my hand. Doctor calls this the squeeze test. We have found new ways of holding hands that don’t hurt me as much… Because how can I not hold her hand?
  2. Firm handshakes. I noticed how gentle my rheumatologsit shook my hand. I usually prefer firm handshakes, but now I appreciate gentle ones. A firm one this week would make me grit my teeth at best.
  3. Writing on paper. Can no longer do my bank signature well coz my grip on pens hurts a lot. My bank tellers last week went nuts. Will buy special pen grips fpr arthritis when i find em inshallah. If u know where to find in UK, please lemme know
  4. Typing. I use google voice typing on my phone and typing on phone is not awful. Typing on iPad is comfy-ish. Typing on computer kills my wrists and fingers. Need to work that one out. Need large mouse and wrist rest I think.
  5. Clothes: I can,t do buttons or zippers or ribbons or turn my kid’s socks inside out.. She’s become more independent, and I took out all my clothes that I can wear without buttons or such, so wardrobe makeover ๐Ÿ˜‰
  6. Shoes. Wearing only shoes I can slip on without using hands, though my mom got me this long-handled utensil to help. Still no shoelaces. I love shoelaces ๐Ÿ™
  7. Eating. Can,t hold fine utensils so use my kid’s baby spoons and forks w fat handles, or eat w my hand bigger stuff like apples or sandwiches or soft to cut like fish. Jaw also hurts a bit, trouble swallowng, so less crunchy stuff. Soup. Mashed. Fish. Bananas. Drink my veggies even, why not? This will workout great in UK coz I eat pesce-vegetarian there anyway.
  8. Lotsa kitchen stuff. Taking breaks when I can. Turning keys. Unavoidable when alone.

I am thankful this is hopefully inshallah temporary. Meds are awful but I think they are helping already (ok, yday they were not, but new meds today seem to be…inshallah)

I am thankful hands are not essential to my job…my husband is a surgeon and this would be torture and an end of his job, maybe.

I’m glad this happened when my kid was old enough (six) and relatively independent. I carried her a lot up until now so she,ll be fine, I think,from now on inshallah. Im glad this happened after i had her, because if it had happened before, i would not be able to try getting pregnant with one of my meds, or I would get a likely flare up after birth.

So..yeah..thankful also for my family,s support, and my wonderful friends and doctor. But shake gently…or hug if we are close enough to do so (close friends, I mean, haha)

Strangley, I am most thankful for my new capacity to empathize with invisible minor disabilities from firsthand experience. I now know that people see my mom’s walking stick and think she is the patient, not me. I know they see me not holding my child’s hand and not understand. Or see my bad handwriting and incongruent signatures and not understand at all. So yeah, thankful for that, too, and thankful it is temporary and not (yet) disability but rather limitations of functionality. And working on lifestyle changes to help me stay as productive and comfortable as possible and do everything I used to do as a mom inshallah (well, that I still need to do. Not going back to helping her get dressed when she pretends she needs help. Emergencies only).

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