I’ve spent so much time at my hospital over the years that it has taken on a somewhat homely familiarity. Don’t get me wrong, it is not somewhere I particularly enjoy going, but it has become somewhere that feels safe, a reassuring constant in my life. This month has seen me going back and forth more times than usual for various things, not all MS-related, and each time I have been treated with the scrupulous care that I’ve come to love and expect from the NHS.
This week I was in for yet another MRI scan, this time to rule out any possibility of PML (Progressive Multifocal Leukoencephalopathy), which is a potentially deadly side effect of certain MS drugs, before I switch treatment.
I parked up next to the mobile MRI units that have fairly recently cropped up, taking over most of the disabled parking spaces in the car park – as ever, disabled spaces are expendable, even in a place where you would expect many blue badge users to frequent. I knew I was likely to be scanned in one of these units but needed to report to reception first and wait to be called.
My walking has been so poor of late that the long and winding, fluorescent green corridor leading to reception seemed never-ending. To make matters worse, on successfully reaching the counter, my legs simply couldn’t support me for the lengthy wait while the gentleman in front was causing a hoo-ha due to being in the wrong place, or him being the wrong man, or it being the wrong time, or the wrong day, or the wrong something. So, I did what I always do in these situations and squatted inelegantly on the floor while I awaited my turn. When I was finally seen I was directed to sit on a chair in the green corridor. My bottom had barely brushed the seat when I was summoned by an assistant radiographer and painfully ushered all the way back along the winding, fluorescent green corridor to the mobile MRI unit sitting directly next to my car in the car park.
The assistant was so patient with me, although annoyingly she insisted on walking behind to allow me to set the pace. I can’t stand people walking close behind me, it gets me all panicky and anxious! She offered to carry my crutch so that I could grab hold of the stair rails leading up to the scanner and kept close behind me in case I should fall. I wasn’t knowingly giving out ‘help me’ signals, in fact, I don’t usually respond well to being offered assistance, I guess she could just see that my walking was a bit off.
Getting onto the scan bed was an effort, my left leg really has given up these days and both the radiographer and his assistant had to heave my legs up for me. Once inside the scanner I was disappointed to find that there was to be no tortoise, upside down or otherwise, to keep me company. Instead, I had a plain old nothingness to stare at while the sounds of magnetic tapping and banging echoed around me. Oh well, seeing as I was having just my brain scanned that morning there was not really any need for entertainment, it was probably the quickest scan I have ever undergone. Before I knew it, I was being escorted out again, this time with the helpful assistant walking backwards in front of me, ready to soften my fall.
I didn’t fall, I never had any intention of falling, but I appreciated the concern all the same. Now all that was left to do was to stroll around to the other side of the hospital to validate my parking ticket, which I get free as a blue badge holder. I don’t think you’ll be terribly surprised to hear that I didn’t make it to the ticket machine. Instead, I flopped into my car, which, after all, was right there, and simply called for ‘help’ at the barrier.
The Wibbly Dinosaur 
What seems normal to everyone else is such a massive and overwhelming effort for us. Another situation where a scooter is invaluable !
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Yes! Something as simple as walking a few yards out of your way is like being faced with a marathon!
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A scooter is a fantastic tool, but I couldn’t afford the crane thing that gets it out of the car, so my scooter has now become completely useless. It sits there in the boot looking into space like a dog in a trance! I can no longer lift 25kg of metal on my own without joining it on the floor!
So its back to using the only stronger bit my body offers, my arms, but I fear they are starting to misbehave, not ms related, but arthritis. I was a basketball, then wheelchair basketball coach for over 20 years, and staring at a hoop for 4 hours a day and trying to make ridiculously long passes and shots, has taken its toll on my warn out body! BUT, I crack on, I desperately don’t want to give up, but its very tempting at times. I share the hospital pain with you wibbly, but next time, use your wheelchair as sometimes it causes much less stress ..that reminds me, we need to get you sorted with grant applications so you can have a very lightweight one, like Kates. It would make a massive difference to your ability to get out and about.
With your current wheelchair, does it have power assist on it? If not, I can point you in the right direction for this. Keep you head held as high as possible, you are a great girl xx
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Thanks, Nick! I actually have a wheelchair assessment on Monday, my current wheelie is simply no good unless I have someone to push me about in it. It’s also very heavy and awkward to lift in and out of the car! If you’re able to help with applications that would be great, I totally have wheelchair envy when it comes to Kate’s new set of wheels xx
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I know that feeling where your legs just feel like jelly and the urge to just give in and sit on the floor after shifting from one leg to the other with your stick hoping that you are going to not collapse in a heap.
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Yep! It’s exhausting isn’t it?!
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Hi Emily – I have just listened to you speaking on an MS Trust podcast, as a result I searched out Wibbly Dinosaur and have just read one or two of your blogs (I will definitely read more in the future but I am supposed to be working today!!!). I just wanted to say that I love the way that you write and tell your story; there is such clarity to the way you describe your experiences and the journey you are on. I can also 100% associate with some of the challenges and feelings you describe. I am 10 years along my journey since SPMS diagnosis and am maybe only now coming to terms with the realities of life, facing up to the loss (of past capabilities) and acceptance of the future. I look forward to hearing more from you and following your journey as we grasp with both hands the next phases of our lives. Enjoy the moment.
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What a lovely message to receive, thank you. I always love to hear from people who can relate to all the fun and games that MS brings!
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