Update - MRI booked!

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Just a quick update to check in (hope everyone had a good Xmas!) as currently going through a rough patch fatigue and neuro wise so can't type too much! Have an MRI scan booked. Whilst I've already had one that was clear I have to jump through hoops again to get anywhere. Hoping that means some movement this year! It's looking like plain old Chronic Fatigue/ME though which doesn't show up in tests so more fighting to get anywhere I imagine.

Going to ring the local council for a needs assessment as well - the house I'm doesn't work for me and the location means I'm completely housebound as I can't get out in a wheelchair due to where it's situated. My wheelchair is effectively not fit for purpose either - had to get it repaired yet again before Christmas. My disability benefits claim has also been processed - the nurse that called was really understanding. It's weird in that I completely forget about my autism in conversations nowadays even though it was really quite disabling (lack of full interoceptive awareness explains my lifelong continence issues - although it seems most people grow out of it, I still have issues (can go without eating and drinking if I don't plan/am not prompted)).

Uni was a bit overoptimistic I feel - having read stories of other Chronic Fatigue sufferers I won't beat myself up about it. Plan now is to get this year done (lectures are online anyway which is better for me fatigue wise and there was much transport drama yet again towards the end of last term) and then take a break until my brain fog is better and I'm living somewhere where transport is easier. The thing is, my mum's effectively my care giver and if I can't live independently. She's been contemplating moving as well over the years so we'll see. If it has to be residential care for me then so be it. I'm committed to making a success of this degree so will do what it takes to be able to travel in. If this year is a write off then so be it really - just glad I gave it a go!

My current project is finding good jeans to wear with protection. Whilst it's easy to find underwear/jumpsuits made with more space for nappies, it's hard to find jeans/chinos etc. with the same considerations in mind.

 

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Sci_Fi_Fan -- What does the ME in Chronic Fatigue/ME mean? I am Chronic Fatigue/Fibromyalgia with insomnia. Probably because I tend to nod off during the day. If I stay in one position during the day for too long, I tend to fall asleep. Like if I am sitting at my computer too long, I tend to fall asleep! Glad your MRI is booked. What is it of? Contemplating foot surgery on both feet. Can't bear weight on each foot for six weeks at all. How to go to bathroom? Solution: Commode by side of bed. That's all I can think of! What kind of jeans are you contemplating? Lee jeans for women were always a good fit for me. However, I always wear skirts & dresses, as I always like to wear fresh underpants every time after I use the bathroom. My Caregiver doesn't like it though. She ends up washing 140 pairs of undies each week!

 

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Sci_Fi_Fan: Had a number of MRIs, for different issues. It is amazing how they can rotate the image and zoom in and out, the sheer clarity (if they used the right machine) once it is on a tablet or computer screen. Lying on that table is sure boring. Glad I'm not claustrophobic. At least Pegasi (is that the plural of Pegasus?) can probably sleep through it. (sorry!)
Not everything on the East side of the Pond sounds better than here on the West side. We did have to go to a charity to get a wheelchair that fit the apartment, for a month's use. The insurance wasn't going to. Powered wheel chair? That takes an act of Congress or a Veteran's organization.

What you just made me wonder is: I don't believe they ever did an MRI for the incontinence. Not that I would know if it would find anything, but. Anyone else? Anyone had any results that helped, except to determine "nothing wrong that we could see"?
That's one pricey test to get a "not that we could see" result. Over $4,000.00, not counting the technicians, readers, etc., on this side of the pond. Grrrrrr.

Good luck, & hope your mum manages to find living quarters that work for both of you.

 

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@pegasi99 ME's just the technical name for Chronic Fatigue (Myalgic Encephalomyelitis). Sorry to hear you're having similar issues. I've come across some jeans optimised for wheelchair users and it seems that ultimately what's needed is a gusseted crotch for extra room for protection. I get what you mean about the underwear - it's why I started wearing protection. It's really cut down laundry and that's a big help fatigue wise.

@AlasSouth Yeah, hear you about powerchairs. It's ultimately what I need due to the neuro and fatigue issues as I can't self-propel much. They're so insanely expensive.

Had two MRIs done in summer 2020, one of which was full body and no abnormalities whatsoever bar a minor thing which explains why I get back pain now and again. Trying to get it done was hard, probably due to the cost involved.