Mondays

Today, it is Monday - Christmas Day. Last Monday, I joined lots of friends at the MS Therapy Centre Christmas lunch here in Swansea. I sat on the table with many of my old friends that I used to hyperbaric dive with. Two of the people on that table were CAPers. Well, to be exact, one of them is now an ex-CAPer. Her screen name here on this site is Moggie. She walks normally with no stick (cane). She proudly lifted her leg from under the table and showed me that she was wearing big red heels. Regardless of MS, I really don't know how women walk in those things anyway. She was certainly doing great. Leigh (the other CAPer there) made the comment "She just doesn't look like there's anything wrong with her at all!"

Yes, it was great to be with old friends from the oxygen chamber once again.

The Monday before that, I had a hospital appointment. I wasn't really quite sure why I was there. I wasn't expecting a lesson in any sort of theoretical physics. I certainly was not expecting a lesson in time and space. It was my MS annual review. That's what they told me it was, anyway. I pointed out that it had been well over 2 years since they'd last seen me. She looked surprised and then just dismissed it and said "Oh well, we're behind".

There were three of us in the room including me. The other two were being paid to be there. One was a nurse. A so-called specialist nurse. An MS nurse. She hardly said anything. There was hardly any opportunity for her to say much. The other woman in the room was a physiotherapist. She seemed to run the whole show. I did actually wonder at one point whether the Secretary of State for Health, Jeremy Hunt, actually answers to her. I have met her before. Her opening words were "Well, we have nothing for you."

She asked about any symptoms that were problematic of mine. I explained about my cold feed and cold lower legs. Even despite an electric blanket being turned up to max, it can take hours before my legs actually warm up. I was sat in my power wheelchair. It was a good job that I was actually sitting down. All of these years I have been suffering increasingly from this cold in my legs and feet and it didn't occur to me what this bint was about to come out with. She said "Try wearing a thick pair of socks"! Well, I would never have thought of that. I later told Froggy (who has virtually the same problem) what she said. Froggy burst out laughing.

I also discussed my inverted sleep pattern problem. I have asked whether it would be them or my GP that would prescribe for this. This bint then went off into some story about why she thought a doctor would not prescribe sleep medication (I already have melatonin). I pointed out to her that she was a physiotherapist, not a doctor and it was not up to her what was prescribed. I asked about more hydrotherapy (which would be within her remit) but she was not forthcoming with that. I queried what they actually did have. The quiet nurse said that next year they might be starting a trial of high-dose simvastatins. She said that was "Very exciting!". As it was the run up to Christmas, I thought I could do with meeting up with a bird that was easily excited. If she was that excited at the mention simvastatins, she would be the one for a cheap Friday night!

The chopsy physiotherapist pointed out to me that I didn't necessarily have to come back in a year or any specific time - almost as if she was doing me some sort of favour.

I would like to say that I came out of that room cured. I certainly had learnt a good lesson in theoretical physics; specifically about time and space. Yes, they were a complete waste of time and space. The thing is, they actually got paid for being there and I didn't. I would never be able to get back the time that I wasted there.

Incidentally, my GP had no problem about prescribing zopiclone.

So, next Monday is New Year's Day and it is a new year. Let's hope that brings good luck, good health and good fortune to us all.

Glenn, I am glad that Moggie is now doing so well after her stint on CAP:  not so sure about her choice of footwear, though!  I have never, ever worn high heels, even when I could have done: flat but streamlined desert boots are more my thing!

This post has made me remember two things: firstly I used to suffer from very cold legs and feet, which has gone now except from when the weather is very cold, which isn't very often! The second thing is that I was never invited for another neurological meeting, whether with a neurologist, physiotherapist or MS nurse after the first two, one paid for, the second with the NHS.  Not that I mind of course, and not that I would have gone, but it does rather seem as though the neurological community is trying to forget about both my existence and that of my awkward spouse....................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.
D W

Well told, Supa. It is good to hear about Moggie.

 

As for Sarah and I — we both have awkward spouses. Thank goodness.

 

Sarah’s neurologist was infuriated by her recovery. His professional gravitas was more important to him than the recovery of his patient. (He turned to me, in a rage, and informed me that I knew nothing about neurology. I remarked that I had in fact studied neuropathology with David Oppenheimer in Oxford. He suddenly went rather quiet.) 

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Well, SG, this could be very funny, if your meeting weren’t so bloody tragic! Maybe more for the self-satisfied medical staff who trained for years, but know zilch ... or less!

i always think it’s good to be awkward, unless you’re a ludicrous and self-important specialist, after a couple of long stretches on heart monitors, the kind they stick to your chest, the cardiologist, who agreed my BP was too low, looked at me and ... shrugged! Maybe he trained with your physio!

but it’s too easy, and painful to cry. Thank God for your sense of humour and ability to laugh, but you must remember to make your next appointment to be patronised!

i hope 2018 sees you walking in red, high heels too! It would guarantee some attentive NHS care! 

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Hey Janet ...

What makes you so certain that I wasn't walking around in red high heels back in 2017? I am a man of many talents.

https://goo.gl/images/hpXD1r

These days, you can be whatever you want or self-identify as or be whatever you choose to be.

https://gifs.alphacoders.com/gifs/view/3288

Regarding Sarah's neurologist. He cared enough to be angered at her recovery. He cared enough to be angered by hard evidence that his dire predictions of Sarah's decline and probable demise were wrong. I meet people that really don't care at all. "Don't bother us and we won't bother you!" really couldn't be clearer in my mind. One would need to be pretty thick indeed to be under any misconceptions.

I know and have seen many examples of people with MS being cognitively affected. I don't think that they know it. They are easy targets to hoodwink and patronise.

I am dyslexic, as are both my sons. I have decades of experience in dealing with and witnessing the antics of Special Educational Needs teachers. I see similarity between those teachers and healthcare professionals tasked with dealing with MS patients. MS "is incurable" and therefore failure is the ultimate predicted outcome for any MS patient. The patients don't actually realise that they have already been written off. They are all loyally attending their appointments for the hoped-for cure. Waiting in line ... like people standing on a station platform waiting for a the train that ain't gonna come. The lines have been pulled up and taken for scrap. People are standing and the people are staring ... but nobody's noticed; the lines have been pulled up ... and yet nobody's twigged. Well, I think that the staff that are paid to be there have twigged. They play the game. They go through the motions. You can quite understand the sheer disbelief when a train does actually pull up.

The likes of Sarha, Moggie & MacK and all those on that train to good health have ever reason to be laughing ... both with joy and at those that predicted only decline.

Smile

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln

Hey SG,

i’m catching up ... slowly! This pulse is hard, so I needed a lift ... maybe 3 or 4 inches, red patent!

but, you’re right, Sarah’s so called medical team, responded, at least! It may be a crap response, but, it’s a response!

i’ve said before, that my GP asked my neuro to send me to a neuro psychologist but, thankfullyhe demurred, he doesn’t believe my desire to get well is indicative of a disability! The MS fulfills that role! I’m lucky, he doesn’t see success lies with my death!

Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro