Not even a professional weakling

[whisperit]

This time last year, I was a member of no less than THREE (count 'em!) professional registers. Today, I got my automated email advising me that my membership of the NMC has lapsed - "it is now illegal to practice as a nurse or midwife". That was the last of my registrations left, so I am now a TOTAL AMATEUR.

Yesterday, I was seen by my rheumy. Or rather, my rheumy's Registrar, a very pleasant 14 year old, who tried a few things and decided that my chronically raised CPK levels were probably due to chronic Search-me-itis. We debated the distinction between "fatigue" and "weakness", and it appears that so long as one can hold one's arms out for a minute and a half, one is not officially weak. I was thus denied a go on the electromyogram.

I'd be interested in anyone else's thoughts on this, actually. What counts as "weakness" and what is "fatigue"? Your opinions may be used as the basis for setting up the new UK Register of Professional Weaklings, Saps and Milksops.

PS Wow! As I was typing this, there was a commotion in the bush next to the window, and my Sparrowhawk emerged with a squawling Starling in her talons. A pair of Magpies were on the case immediately, and she took off with them in hot pursuit. More drama than a Scandi-noir some days, here.

[PMRpro]

The differentiation between fatigue and weakness seems to cause a perennial problem to medics - and I wouldn't have said holding your arms out was a measure of weakness. I can hold out my arms for that sort of test but I'm too weak to do other things. That's not a very good explanation either - but the only way you know definitely is to be tested I'd have thought.

These healthcare professionals get younger every week...

Hope you learn to enjoy being an amateur. OH eventually decided the registrations were really not worth the cost as they kept putting the price up. He was told he couldn't do xyz in the UK - since his hobby work was now in Austria and not directly clinical it seemed pointless. The hurt does fade - but I do know where you are coming from... xxxx

[whisperit in reply to PMRpro]

Thanks PMRpro,

To be fair, she also got me to push back against her - I'm sure you are familiar with those little arm-wrestling "tests" - but it did strike me that this is an inadequate way of assessing muscle weakness, and no test of stamina at all - which is surely a key element in this. Unless that comes under "fatigue"???

I appreciate your good wishes and yes, one thing I am glad about is no longer having to hand over the large annual fees - not to mention the paperwork x

[Lupiknits in reply to whisperit]

Did the work experience schoolgirl only do the arm weakness trick? I actually have teensy arm muscles from holding my weight off my bum on car rides, which are rather uncomfortable. Leeds is the pothole capital of England with extra high speed bumps.

I've had the leg pushing thing, to be told I have very weak muscles and wastage. I can hold my arms out for a minute and a half but now buy doggy grub in 3 kilo, more expensive sacks. I had so much trouble with the last large value one, there were enough scattered dog nuggets to make it smell as if I'd been practising gravy wrestling.

I think I call weakness an increased inability to do physical stuff the average person can, and fatigue is sleeping, sleeping, and swooning on a chaise longue

I'm sorry you're no longer considered a professional. If it helps, my contribution to a large study went from page one of google results to page ten. That was three years ago: not looking anymore.

I think most of us are professional "some kind of thingyitis" medical mysteries though.

[PMRpro in reply to Lupiknits]

Your analyses are always spot on... xxxx

[Treetop33 in reply to Lupiknits]

Interesting to hear your thoughts on that strength test, which I didn't think had anything to do with fatigue (which is more that "I can't stay upright or awake anymore/I'm done for the day" feeling).

I sometimes think it's hard for them to understand it if they don't have the problem themselves and haven't read around (that being said, I have a friend who is a GP and she reads all sorts of experiential accounts of illnesses to understand better...I think she knows it, ahem, doesn't come automatically to her).

Sorry to hear about your epochal moment career wise. It is significant and painful to move on. Maybe you'll find a different way to make an impact, which fits with your health (writing, maybe? I really enjoyed reading your post Wisperit - full of interesting ideas!).

[whisperit in reply to Treetop33]

Thanks, treetop,

I have been struggling to describe my symptoms around this for ages. I think the difference between "weakness" and "fatigue",in medical terms, is that weakness is a permanent state, unrelieved by rest, whereas "fatigue" is more transitory, and alleviated by rest. Neither of these seem adequate for how I feel. My experience is more of a constant sensation throughout my body of a kind of pervasive ennervation. Even lying in bed, I have a sensation that is slightly less than tingling, but more than nothing, that I "normally" would associate with having done a lot of exercise and needing rest. On top of this are the experiences of poor effort tolerance (e.g. setting off to walk half a mile, only to find that I am exhausted after 100 yards). On top of that is sleepiness....I feel that I could sleep for 100 years, but when I get to bed, I lie there for hours, awake but tired beyond....I feel this is worth a long discussion, it's very subjective, yet very real....thank you for your thoughts x

[happytulip]

Snap, got the same email today myself.

You will always remain a professional, just a retired one on grounds of ill health. You will always remain a medic, just a retired one on grounds of ill health.

Yes it's gutting and I hate it. But you are still an advocate for a very important patient, you! You can still stand up to the 12 year old medic who doesnt consider it necessary to do xyz about ABC. You can make their jaw drop with your knowledge and experience about your own condition and treatments and I KNOW that you won't be shy about pushing them for the correct investigations and treatments. You would have done it for years for other people, now time to do it only for you.

Not being on that register anymore doesn't stop you from being you. Being on that register is only part of the identity that it gives you. If you're a medic, you are a born medic, whether you can still sign a passport or not! And that goodness we dont have to pay those fees anymore!

Just do me a favour. In the future, I too am likely to have a black dog day about not being on said register anymore....so poke this post back at me.

You're doing great. You managed your daughters graduation, you are managing to reduce your pred and you are dealing with lapsing your registration and still being able to offer advice and support to others.

Take care!

[whisperit in reply to happytulip]

happytulip, you are lovely. Funny enough, my first thought when I got the email was "I wonder if happytulip is looking at the same email this morning". I hope you are doing OK with it. Thank you x

[misty14]

Hi Whisperit

Sorry you had ' that email' today and how it makes you feel. No one can take away your career and abilities. Look how you've been able to help so many on here with your knowledge and clever writing. I agree with treetop that maybe you could pursue writing in this new chapter of your life!.

Good luck with your neurology appt. hope more helpful than the 12 year old Rheumy!. Maybe a change would be a good idea?.

Glad the wildlife are keeping you busy and hope your mum's OK. X

[whisperit in reply to misty14]

Hey misty,

Thank you for those kind words. I am doing a bit of a writing project as it goes; a sort of memoir for my daughter with stories from when she was tiny and of those bits of the family that she only knows from photos - my grandparents were a funny bunch on both sides - and that is something I like doing. Mum meanwhile has been given a day for her big op - just 10 days away now. So I'm going to write something for her too in the next few days, which hopefully will help keep her spirits up. Hope all is well with you xx

[misty14 in reply to whisperit]

Hi Whisperit

It's wonderful what your doing for your daughter and so important she knows about family in case she wants to trace family history later on!. Last winter my mum did it for me , I've found it really helpful. Do you watch Who do you think you are?.

Best of luck for your mum, can't be easy thinking about it!. I'm sure she'll love what you write as you do have a quirky way with words. I also should have added that this illness takes so much away from us and it's tough!. Have you been better back to 5 mg?. I've made it to 7 mg and feel OK after a bumpy start. Feel pleased I've reduced them by 13 mg in two years done very slowly. I've recovered from a broken foot in the six weeks and just got strong nerve pain as injections have worn off earlier because of having to wear a big boot!. Thanks for asking. Keep us posted how it all goes. Fingers crossed for your mum. X

[whisperit in reply to misty14]

Thanks misty,

You've been doing well with the preds! It really bites back if it thinks you are taking it for granted, doesn't it? I'm back to 4 now, as after a couple of weeks on 5 I started getting those burning cheeks and night sweats etc, and it didn't seem to be giving me any benefits. Interestingly, I saw a new GP last week, who said he would encourage me to cut out the steroids altogether if I can. He also suggested a couple of other things that my usual GP has not, so I think I will be changing my loyalties.

A broken foot, though!? How the devil...etc? So painful! And having to hop everywhere! Surely you ought to get a free pass from all other illness and injury! Haven't you (we) suffered enough!!!???

Hope the hedgehog is doing well; I'm off to feed mine right now x

[misty14 in reply to whisperit]

Thanks Whisperit , I do feel pleased about the steroids as its always been tough to reduce!. Never been on 4 and 5 mg which has made me prone to breaking a bone but I m healed and walked in a big boot, no hopping!. It's great to see a new GP who has new ideas. Would be fab if you came off the steroids. I've been told I won't ever!.glad he's made other suggestions you like. Glad hedgewig is still coming. Ours has just arrived too , there stocking up for hibernation I think. We've had adults and two babies Harry sends his love.goid luck for neurology. X