Another week with MS – and it’s World MS Trend Day! #WMSTD #cureMS

Just another week with MS. When you have MS you’re never alone and you never have a shortage of people to talk about the most intimate parts of your daily life.

Once again – I leave nothing out! In honour of World MS Trend Day I thought I would give you a little insight into this week with MS.

Tuesday – 6 monthly urologist appointment to see the man who told me 6 months ago that I have a “pristine bladder” – there’s something to put on your resume! He still can’t believe how good my bladder is, so we will do another ultrasound in 6 months. Our conversation? How do I pee when I can’t transfer myself onto the loo and Ian isn’t at home? He doesn’t know, but the only solution he can think of is doing self catheterization…but if I can’t transfer, my hands aren’t good enough. He looked puzzled… ah well….see you in 6 months.

By the time I left I couldn’t speak, couldn’t move. Perhaps we should have gone back in and asked him how he thought I should be now… No… I went home to bed. Slept 5 hours. Woke up no different. No speech and movement all evening. Ian doing full transfers for me.

Wednesday: I need repeat prescriptions so I go to see my GP, again. We go over my neurologist appointment and my urologist appointment. (Try say those two words fast…neurologist, urologist…only an ne different!) So we end up talking about how to pee when I can’t transfer. She’s firmly against catheters going to my pristine bladder so says she will put in a referral to my Occupational Therapist as “they often have great solutions”. I can’t be the only person in history with this problem?!? Why is there no answer to this that these people just know?!?

I tell her not to worry, I’m seeing my community nurse the next day and she works with the OT so she usually does a referral anyway. No, no, I want to do it, says my GP. Fine, knock your socks off.

And you’re not speaking very well, are you? Really!!!!

I go home with no speech, no movement, go to bed. Sleep a lot, again. 

The phone rings “Michelle, this is intake appointments! Are you okay! We just had a referral from your doctor saying you must be seen tomorrow about your bladder…” I explain that all is okay, that my GP must have got the wrong end of the stick. I go back to sleep.

Thursday: The community nurse comes. For an hour and a half we talk about all the things I can’t do. We talk about me not being able to transfer (sometimes) and how do I pee if Ian isn’t here…she decides I’m not safe to be left alone for more than an hour or two… so….

We decide it’s time to apply for CSIL – independent support so Ian can have some respite…geocaching time…each month. What a process! We have to keep a diary for a month and time every action Ian does for me. Get my clothes out for me? That’ll be two minutes! Chop my food up? Another couple of minutes. It’s going to be a long month…

She left…I went to bed and slept a lot. Some speech, some movement, but not the usual amount

So in three days I have talked to four people about my pristine bladder and not being able to transfer (sometimes) to pee – a urologist, a GP, an intake booking clerk and a community nurse – and a have an appointment with an OT to come… and I still don’t have an answer… HOW DO I PEE IF I CAN’T TRANSFER (SOMETIMES) ON MY OWN?!?

Thank you MS, thank you. Without you, my life would be empty of these conversations…

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