7 years in May since I was diagnosed.: I've been... - PMRGCAuk

PMRGCAuk

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7 years in May since I was diagnosed.

IdasMum profile image
5 Replies

I've been reminding myself how far I've come.

Back in 2016 I was struggling to have enough energy to get dressed and spent many days in my PJ's. Most I managed was to provide a meal each day. Showering was exhausting so that didn't happen often either. Back then I had few spoons and when they were gone they were gone.

Today, after several weeks of planning/preparing/shifting stuff, we're camping at home. Kitchen almost out of bounds, no sitting room, no comfortable sofas/chairs to collapse on and no CEILINGS! We're living much of the day in Mark's bunker and I am up in one of the bedrooms with my Mac and tablet. I think we're acclimatising, just as well as the work downstairs is on hold until and electrician comes to sort out some dodgy wiring in the ceilings. Once that is done, the ceiling replacement can continue and then a complete redecoration of the lounge and kitchen. It'll be worth it.

The busyness, extra (forced) walking etc has actually improved my overall stamina. I am coping.

I walked around my daughter's small village yesterday, only around 1km in all but did it without thinking.

Today I showered, cleaned the shower, stripped the bed, made dinner, remade the bed (with Mark) and then mopped the floors upstairs after he'd vacuumed. As you can see, I am feeling pleased with myself.

In other news, Mark has been suffering with his knees and his mobility declined really quickly. He says he suddenly felt very old. He girded his loins (having no knees to gird) and we saw our Dr to ask for Hyaluronic Acid injections. (Dr had mentioned them over 2 years ago). This week we discovered it can only be prescribed by a Rheumy. Chances of us getting an appt before Canadian trip in May are slim.

There is a website here called DocLib where one can make appointments for various medical interventions and I went on there Thursday evening to book Mark a radiology appt. I then check for rheumy appts and amazingly found one, same day as his Xray. All the other appts with various rheumys were for mid June. So, fingers crossed we get him sorted before May. During this time I've persuaded Mark to take analgesia, and swapped him from Paracetamol to Ibuprofen. He's improved loads, so am hopeful whatever the outcome of Weds.

I hope you're all enjoying better health and have had a peaceful day.

Photo is of Jazz the mouse killer!

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IdasMum
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5 Replies
Nextoneplease profile image
Nextoneplease

Oh well done IdasMum 😊🎉xx

So pleased you’ve come so far and are doing so much better. I bet it’s felt a long road at times…..! Great you can do so much. Just be careful not to overdo things. You want to enjoy that trip in May 🤩

All the best and thanks for such a positive post xx

scrambledegg profile image
scrambledegg

An inspirational story. You should be proud of yourself.

PMRpro profile image
PMRproAmbassador

I wish you joy - never doing it again!!!!!!

IdasMum profile image
IdasMum

Thanks all. 😀

Jackoh profile image
Jackoh

Inspirational and encouraging! 💐

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