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Accepting that a part of your body doesn't work as it should, or how to get used to a minor disability?

Antje77

Guru
Retired Moderator
Messages
21,100
Location
Friesland (the Netherlands)
Type of diabetes
LADA
Treatment type
Insulin
As some of you know, my left arm hasn't been working right for a couple of months now.
No pain, but some of the muscles in the arm don't play along. I can still do many things with it, but some things I can't, like lifting things. Annoying, but hey, things will pass.

A while back I had an EMG (measueres electrical activity in various muscles and nerve activity), which showed that some of my arm and shoulder muscles didn't get the message from my brain. Didn't show the cause though.
So on monday I had an MRI.
Online results are back today so I spent some time deciphering all the technical stuff, it will likely be at least 3 weeks, possibly longer before the neurologist has time to go over the results with me and do the translation for me.

If I understand correctly, I have cervical foraminal stenosis in my neck, a narrowing of the canals where nerves leave your spine.
Again if I understand correctly, this isn't something treatable unless it gets much worse.
So it looks like perhaps things won't pass this time...

And I'm trying to wrap my head around this 'never' (if indeed it's a never), and I'm not sure how I feel about it.
I'm currently looking into finding a 'real' job for the first time in a long time, and suddenly quite a lot of doors have slammed shut in my face. I'm not even sure what type of job I want, but many physical jobs will be out before I even looked into them. And those are the type of jobs I've been playing with in the past 6 months.

So not sure what my question is, but I would like to hear your thoughts and experiences, maybe it helps!
 
It's probably as frustrating as admitting that your pancreas is no longer working. But diabetes didn't stop you from living a full life, did it? At least you were a cool moderator, so you can look for a "normal" job in IT or something related to communicating with people, because you're great at it. You also obviously know the tourism industry very well, because you have worked a lot in this field, so you can do the same, but as a manager who selects a tour for a tourist
Lots of hugs from me
 
First, you grieve. Same as with anything that knocks you for a six. Like diabetes probably did. You go through all those stages, anger, bargaining etc, until you end up at acceptance, all of which you know already... And somewhere in between those stages, you figure out what your limits are, what your options are yet, and how this will fit into your life. Because it will go on, with or without a fully functioning arm.

And it is an absolute b**** to have to go through. Again! Because there's been enough grief already... And I am so very, very sorry the news, far as you've sussed it out so far, isn't better. (Kornelis feels the same way, he's commiserating as well.)

Get in touch with someone from the UWV maybe? You might be entitled to a -probably partial- arbeidsongeschiktheidsuitkering, and they'll likely help you look for a job that does fit your abilities, probably better than the other agencies you've been in touch with can... You've got a sharp, amazing mind, and the rest of you, save for your arm and pancreas, is pretty functional yet, so.... Don't give up if you won't want to. And keep in mind the disability pension thing, whether partial or whole, won't get the same response as any other uitkering, because they won't tell you to "eat your house" first.

That's the practical stuff, really.. Which is all entirely useless when it comes down to healing your heart over this, and won't help your arm.

Antje, I am so, so sorry it's looking this bad.
*big hugs, that last a while*
Jo
 
A) we can't diagnose here
B) you can't diagnose here
This document uses simple terms that might help your research, but dotn go jumping to conclusions until you've seen your doctor
 

Attachments

Practical as always!
And thanks a lot for believing me a cool moderator, much appreciated.
IT, I don't believe so, being a mod was taxing my IT skills to the max. Otherwise, excellent suggestions, even though at the moment I'm sulking because I wanted to be doing something fun and physical outdoors. Which likely wouldn't have been the best course for me anyway, but having that decided for me by my stupid arm makes me cross. I'll get over it though!
 
Diabetes was different, it was something I could do something about and beat its lower back from day one, even if it wasn't (and isn't) without frustration. Otherwise, you're right, of course you're right.
UWV is completely useless at the moment, but I've been in contact with some other organisations to help me find my way in this adult thing of working. To be continued.
Sharp and amazing minds are all well and good (and very enjoyable), but it's hard to find a job based on that alone without an education or relevant work experience, unless you're very lucky.
Let's hope those organisations have something sensible to tell me.

Thanks for your friendly message, and thanks to Kornelis as well. How did he do on his online test?
 
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MrsA2 said:
A) we can't diagnose here
B) you can't diagnose here
This document uses simple terms that might help your research, but dotn go jumping to conclusions until you've seen your doctor
Click to expand...
Thanks, and you're correct, you can't diagnose, I can't diagnose, hence the multiple disclaimers in my post.
I also took a shortcut for waiting for the neurologist and sent a copy of the results to my physio, asking if he thought my interpretation and expectation was more or less correct.
If I'm correct, it will be the physio who's next to look into it, may as well start that without waiting for the neurologist.
 

don't tell anyone this secret, but in most cases we just Google faster than others but in general, I did not mean the work of a programmer, but for example a manager (technical skills are needed at the level of working with word and excel, but the ability to interact with capricious customers is really needed, and you have it, because you worked with tourists), a technical support operator (in 70% of cases, this is about the same as explaining to a forum participant where to find the right button, and in the remaining 30% of cases it is to come to the programmers and say "fix it"), a content manager or a SEO specialist (if you write without mistakes). In the end, you can start a channel on YouTube or any other social network and monetize it (about diabetes, boats, travel, dogs or something that you are passionate about)

I'm willing to bet that if you need to provide feedback on your work as a moderator, we will write several dozen cool reviews in just a day
 
hi @Antje77 big hugs.
Please don't assume the worst. I cannot say anything useful here and you will need to get a clearer picture from your neurologist. That said, there is huge progress in the area of spinal nerve damages. For example I've seen tetraplegics that manage to get (partial) use of their arms back. We are rooting for you.
 
Oh @Antje77 . I am not looking for a pity party, and I guess you don’t want one either.
Life has a habit of getting in the way of what you think you have planned. As someone who has experienced this on more than one occasion, I can identify with your concerns, and tell of my own experience of similar. I have changed career a few times in my life. First on becoming a mum, in the ‘dark ages’ when there was no such thing as maternity leave, and women were expected to stay home and do ‘domestic duties’ either as soon as they married, or certainly when they had children. Don’t get me wrong. I loved the time Ispent rearing our family, I just was shocked that at the time, it wasn’t possible to do both. I left a career I loved, reluctantly, but used the time to enjoy learning alongside my little ones, and developed a career in childcare and education, until they were at school, when I was about to embark on a new career in teaching in further education. A week before I was due to start, I was in a road accident, damaging my spine. That career ended before it began.

I used the convalescence time to read and study. Following the accident as I wasn’t recovering mobility, and had pain and trouble with arms and using hands, a MRI scan ( a new innovation at the time) showed I had, at 38 years of age, severe stenosis in the cervical spine. I had suffered arthritic joints since my early teens, but this was a huge shock.

Not wishing to take over your thread, but when the shock wore off I realised I had a choice….. Fret about what I had lost, (and I won’t deny, I mourned that life I almost had)… Or concentrate on what I could do, and develop that. So I went to university, with young people who were a similar age to my own kids. It was hard, because I did have pain, and I did struggle, I think a lot of those young students thought it was a pain having an oldie like me in their lectures, but they soon warmed to me, because I knew how to use a library, and read research papers, and manage my time, and so I did make some young friends. I missed out on a lot of the student parties, though. I enjoyed a different career after I graduated. One that was very fulfilling. I also, due to the spine problem, I missed the walking and dancing, but embraced swimming and aqua exercise again. That helps with pain relief, and functionality.

Enough about me…. Antje77, I have, I am sure, told you before, you have many skills and talents. You can find something to give you a fulfilling life. You enjoy swimming, too. Keep moving. Keep meeting people. Look for voluntary opportunities. Socialise in real life situations as well as online. You are young enough, and smart enough to reinvent yourself. Please don’t let any health condition define you. There will be plenty of things you can do. Go out and find them, and don’t anticipate the MRI results, or write yourself off. There are lots of new treatments available, that were not around when I was first diagnosed. I still have pain and some disability, but they are manageable.
Be kind to yourself. You can do lots of things. Believe! As doors shut on you, you will be able to see more clearly that others will open, and some will be in buildings not yet developed our built. Keep looking with an open mind.

edit for a couple of typos, but most likely missed many more!
 
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Hi @Antje77
I can only add my own sympathy and understanding for you and that useless appendage, that begs attention.
you know my circumstances and my health issues (list underneath)
And a few years on you as well.
I do know what it's like to be told there is no cure to a condition, more than once no magic pill, just control.
then again with my spondylitis, that needs attention, which is very similar to your nerve neck issues. They did originally think that I had the same but it's my blood vessels becomes narrowed because of neck movement.
anyway, back in the late nineties, I had my left arm in a sling because of an accident in work, my shoulder muscle was damaged and my nerve bundle was stretched out.
It was nearly three months off work, which included physio, manipulation of my nerve bundle and surrounding muscle area. It healed.
But like arthritis, it is worse in winter than summer.
But my shoulder and arm are now great.
Going through my experience with my neurologist, with the other conditions, he gave me confidence to be more resilient and do as much manual work I could.
A job is not beyond me.. But because of my wife's disabilities, I need my arms more every day.
You are right physio will give you the tools to help you through this, I have neck, shoulder arm, leg and back stretching, and doing a lot in my garden as well as the chores etc.
I know you won't give in to this, get the treatment that is right for you.
My bestest wishes, mate.
 
Sheesh so sorry to hear that @ANTJE. What a thing to happen. Is it arthritis that‘s caused the stenosis ? I have herniated discs in my lumber region of my spine and my legs ache all the time if I walk, but not when I’m stationary. I also have mild stenosis and it’s from the arthritis , small bone spurry things that press on my spinal canal and it causes the aching in my legs. It showed up on my MRI - stenosis ! Not sure what they can do other than cortisol injections. Life can be hard sometimes.
You have a bunch of people rooting for you , including me. I hope they are able to give you more answers and an understanding of why and what can be done.
 
Diabetes was different, maybe, but it required research, and now you'll have to find work-arounds and adjustments too... The full function of the arm may not be salvageable, but... If there are work-arounds for a defunct pancreas, there might be ones for your arm. Things you can do where you don't need it, or no more than it can actually handle etc. See what your options are with an arm less. I had a one-armed shrink once, and he put a little paperweight on his prescription pad, so he could write without it going anywhere. Work-arounds.

I do hope those folks will be able to help... Especially now that you're a hair's breath from a diagnosis and they'll know what to realistically expect. (Most people assume something'll be fixed with 6 weeks of taking it easier than usual and a couple of NSAIDs)

Oh, Kornelis failed the test, which was to be expected, really. He was too tense and stressed, which usually seems to kick his dyslexia into overdrive, which it did now. He barely knew what he was reading, and that makes it hard to give the right answers. Knowing what the question is, helps! Everything being in English acerbated things, of course. But now he knows what to expect, how it works and how much time he has per question, so I figure the re-take of the exam'll later this weekend, will be fine. He's not as worked up about it. And if it happens again, well.. Like I said before, he knows how to do these things... The exam doesn't really mean much in that respect.

Anyway, I do hope you're feeling alright and you've had a good night's sleep. Or are still having one. Not everyone wakes up well before the b**t crack of dawn, to shoot heather and deer.

Hugs!!!
Jo
 
So sorry to hear this @Antje77 . The unknown plays horrible tricks with one's mental health and equanimity. I came to a similar "roadblock" in 2018, knowing (or thinking that I knew) that there were 3 possible outcomes - rejection, pancreatitis or cancer. Although the hospital reassured me that it wasn't cancer before making further investigations, I spent 6 months as a zombie, unable to settle to anything. With hindsight that was 6 wasted months. The problem was solved by gradually adjusting existing medication. Although it is easy for me to say, I agree with @Lupf 's advice. The good thing is you are being investigated. I really hope they sort you out quickly and positively. The very best of luck!
 
I've had several careers, including 9 years as a physiotherapist. There is a lot that can be done with many conditions, but as with any other profession, skills sets vary. The most important thing is that you have a diagnosis. If a practitioner doesn't work in the way that suits, try another. There will be someone with the experience to suit your condition and be able to improve it, and it will take time, but then it's taken time to get this far too.

I've had a number of spectacular accidents involving fast horses and big fences, and my spine isn't good, but I found a wonderful chiropractor. If you have the chance and inclination, try chiropractors and/or osteopaths as well as the physios. The good ones use whatever skills are known to benefit a particular condition.

We are all here for you.
 

Its odd

I’ve been off work for nearly a year due to issues related to back/neck

It started with difficulty walking this is due to a cyst in the lower spine that causes compression on the spinal cord

I’ve also had issues with left arm…. Pain/numbness and difficulty with grip, this is caused by a severe root nerve compression in the neck

I also have a lot of mid back pain due to bulging discs and spurs on the vertebrae

Got an appointment in a month to discuss what surgical options are available

It’s difficult as physio has said I’m unfit / unsafe for work
 
I'm so sorry to hear this @searley . I'll have my fingers crossed they can do something for you!
 
I have only 3 (maybe 4) physio appointments left for this year unless I want to pay for them myself, so I'll have to make the most out of those appointments. I'm sure they're willing to think on how to do this. Thanks to my physio having been on holiday when I wanted to have my last appointment, there are now 2 of them who looked at it already.
The last one asked if I'd be willing to share the results from my MRI with the both of them because he was curious, so I did to satisfy his curiosity and added my questions in the mail.
This means there are likely two physio's looking into it and possibly discussing what they can do, all without me spending one of the appointments left.
I think both of them are physio/chiropractors,hopefully they'll come up with a plan!
 
JoKalsbeek said:
Anyway, I do hope you're feeling alright and you've had a good night's sleep. Or are still having one. Not everyone wakes up well before the b**t crack of dawn, to shoot heather and deer.
Click to expand...
Today is a much better day, if somewhat hungover.
One day for sulking and then back to life. I might have another sulking day after I know more, we'll see.

Got drunk yesterday, had a long zoom meeting with a friend until deep in the night, slept until noon and woke up ready for a swim.
Fed the animals, fed my neighbour's animals, brewed coffee and drove off with my first cuppa for a nice cold swim to get rid of the hangover.
Drove to a friend to pick her up for a second swim, in the sea this time, and haven't worried about the arm for a moment today.

Worries will come back of course, especially work related, but not today.
 
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