OS ways and Poor Health

pollyanna_26 · 30 August 2017 at 10:47AM

maddie I'm hopeless at things techie! I have things in files . My eldest daughter tried organising me a few years ago and put different things in files . I still don't understand them so never refer to them . In fact I'd forgotten all about them until I read your post .
I'm pretty well winging it here .
The things that are useful are being taught to bold by Mar and two kind posters on this thread explaining how to quote .
I've just glanced back at my posts yesterday and the punctuation fairy wasn't in the building when I wrote those .:rotfl::rotfl::rotfl:
Wishing you a good day . It's cooler here and a bit murky .
polly

pollyanna_26 · 30 August 2017 at 11:29AM

Pain Management .
As we've reached a new page I'm putting this here . I've noted the page number for future reference . The question of the clinics etc has come up many times through the thread . I can't recall the posts and recommending people read through the thread is a big ask for those in pain .
There are a number of places under the NHS that deal with learning about your condition and finding ways to manage as well as possible in daily life .
Some are based in hospitals others in clinics etc . Ours is called A Health and Wellbeing Centre and is part of our NHS Trust .
Our GP first mentioned it and made the referral . You can bring the subject up yourself and check if there is one in your area . You are able to go beyond your area if needed .
I can only talk about ours . When you receive your first appointment ( can be a bit of a wait as the demand is high ) you will fill in a list of questions and a nurse will discuss things with you .
This was followed shortly by an appt with the Dr in charge who did a full examination and discussed meds etc .
Next appt was physio who made a plan suited to dds needs taking account of all her diagnoses so nothing would work against another .She had a series of physio sessions and eventually pool therapy in our Spinal Unit Heated pool .
As she was very young and struggling with existing MH issues she was seen by the team psychologist . This was later done at our hospital drop in centre as it was nearer home
The aim is to set up an individual plan tailored to the patient . Once things are running ok there is no need to return as in our case management is handled by our gp .
We can self refer at anytime if needed but have not needed to do so .They did have tea and biscuits sessions once a week but my daughter doesn't do those things . I imagine some people would enjoy the contact with people who understand .
Personal opinion only I can honestly say this thread is the only group type thing that hasn't made me want to stick my head in a bucket and scream . We all have pain days and low days and all here empathise but we don't compete in the my pain is worse than your's stakes . We have a mutter , it's good to get out frustration anger and worry but then we move on . No pity parties here!
Finally our clinic operates a pick and mix after assessment . You can choose to only do one or a few of the things offered .
The doctor we met was a leading expert in pain control but agreed with the regime already in place via Dr One in a Million

It's worth taking up the chance if mentioned to try the service or discuss it with your GP . If it doesn't help you don't have to keep on .polly x

Wednesday2000 · 30 August 2017 at 11:32AM

I have a list of things to tell my GP next time I see them. I've made two appointments for the next couple of weeks.

It's ridiculous with fibromyalgia that you have so many different symptoms that it's hard to know which ones to pick to talk about in the 10 minute appointment!

My male GP is great and usually gives me extra time. I always get to the doctor about 30 minutes early and so normally I am seen for a longer time as some people don't turn up for their appointments.

LameWolf wrote: »

I was so far away with the Faeries when they gave me Amy-on-a-Trampoline that I was a danger to myself and others!! :eek:
My anti-d medication these days is Moclobemide.
There are so many different ones, it's just a question of finding what works for you, I think.

I've actually been on lots of different ADs on and off since about 2005 and I stopped taking them completely around 2011. That is why I was very wary about taking Amit this time.

My GP said to stop taking the Amit as I was getting some weird symptoms. I don't know if there is something in them that I react to. They thought I had Bipolar at one point as you are not meant to have antidepressants with that condition and told me not to take them.

Wednesday2000 · 30 August 2017 at 11:33AM

pollyanna_26 wrote: »

Pain Management .
As we've reached a new page I'm putting this here . I've noted the page number for future reference . The question of the clinics etc has come up many times through the thread . I can't recall the posts and recommending people read through the thread is a big ask for those in pain .
There are a number of places under the NHS that deal with learning about your condition and finding ways to manage as well as possible in daily life .
Some are based in hospitals others in clinics etc . Ours is called A Health and Wellbeing Centre and is part of our NHS Trust .
Our GP first mentioned it and made the referral . You can bring the subject up yourself and check if there is one in your area . You are able to go beyond your area if needed .
I can only talk about ours . When you receive your first appointment ( can be a bit of a wait as the demand is high ) you will fill in a list of questions and a nurse will discuss things with you .
This was followed shortly by an appt with the Dr in charge who did a full examination and discussed meds etc .
Next appt was physio who made a plan suited to dds needs taking account of all her diagnoses so nothing would work against another .She had a series of physio sessions and eventually pool therapy in our Spinal Unit Heated pool .
As she was very young and struggling with existing MH issues she was seen by the team psychologist . This was later done at our hospital drop in centre as it was nearer home
The aim is to set up an individual plan tailored to the patient . Once things are running ok there is no need to return as in our case management is handled by our gp .
We can self refer at anytime if needed but have not needed to do so .They did have tea and biscuits sessions once a week but my daughter doesn't do those things . I imagine some people would enjoy the contact with people who understand .
Personal opinion only I can honestly say this thread is the only group type thing that hasn't made me want to stick my head in a bucket and scream . We all have pain days and low days and all here empathise but we don't compete in the my pain is worse than your's stakes . We have a mutter , it's good to get out frustration anger and worry but then we move on . No pity parties here!
Finally our clinic operates a pick and mix after assessment . You can choose to only do one or a few of the things offered .
The doctor we met was a leading expert in pain control but agreed with the regime already in place via Dr One in a Million
It's worth taking up the chance if mentioned to try the service or discuss it with your GP . If it doesn't help you don't have to keep on .polly x

Oh wow, thanks. That is one of the things I am going to mention to my GP.:)

I've been looking at the information about a place in London called The Optimum Health Clinic. It specifically helps people with CFS/Fibro. I will see what help I get through the NHS first before I spend any of my own money, though. Lol.:p

pollyanna_26 · 30 August 2017 at 11:54AM

BOOKS
Following on from my previous post a small number of books which have been quite helpful .
I know I've typed this a number of times in the past year but this book is the one I fully recommend . It's quite simple and pretty basic to look at and is possibly the only book I can read without my reading glasses. At first I thought it too simple but it did make me think and i think for those newly diagnosed it answers those questions you ponder .
The Pain Management Plan : How people living with pain found a better life . The things that helped them and the things that set them back .
Apologies for the bold but it will easier for new posters to find .
This is pretty well the NHS Handbook used in Pain Clinics and written for that purpose .
Not specific to any one disease but has helped many with differing painful and exhausting illness .
I've only seen it on Amazon or Waterstones online . You can't have a look through it on either site so I bought it in good faith due to seeing it used in the pain clinic
It has a lot of helpful pointers to pacing etc also pages to track things day to day including an anger page ! That helps you through three stages .
What annoyed me
What I thought
Anti stress thoughts .
It's like a little toolbox in a way .

polly x

ArthriticOldThing · 30 August 2017 at 12:04PM

Hi. I'm a regular follower of this thread though post very rarely.
Just want to say thanks for Polly's last 2 posts. Very helpful.
I have Psoriatic Arthritis, Pernicious Anemia, Coeliac Disease, Type 2 Diabetes and a host of other sundries so really appreciate all your stories and ideas.
Thank you.

pollyanna_26 · 30 August 2017 at 12:05PM

wednesday See if there is an NHS option first . There is good and bad in private so worth looking to your Dr first .
I would discuss anxiety and or depression meds with him too . The right one will exist it's just a matter of finding it .
If you don't already know you can book a double appt if you have a good doctor . Gives you more time .
DD is always last appt every fortnight and it's like a comedy half hour.

I've just realised I meant to mention a couple of other helpful books . Will do that shortly trying to keep things on one page for furure reference .
polly

pollyanna_26 · 30 August 2017 at 12:14PM

AOT You're here at last :j:j:j
I've spotted you lurking in the background and hoped you'd come and join us . You don't have to post loads if you aren't up to it .
I'm not usually such a rampant poster but have been a bit extreme in the past 24 hours

I just wanted to try and get a few things repeated for readers new or recent . Irony as usual I have noted this page number and post numbers in the book I've just mentioned backing it up with the same in my 13 month dairy which runs to the beginning of next September.
I'm off to have a toastie and will be back later .
Look after yourself
polly x

LameWolf · 30 August 2017 at 12:32PM

Prinzessilein wrote: »

I am well jealous of all you folks who have lovely relaxing baths....I REALLY miss having a bath!....I have a walk in shower which is great, and means I can bathe unaided....my dyspraxia means I don't have a snowball's chance of getting in/out of a bath......but oh I would love an aromatherapy soak! (I used to keep a selection of oils and blend my own in the 'olden days')

I'd hate to be without my bath; it's one of the things I really, really miss if we go away, as most hotels only have shower facilities. I purchased a bath-lift to get in and out with minimal assistance (can't have Mr LW doing his back in lifting me

). It makes such a difference being able to soak the painful joints in warm water.

Just as an aside, does anyone else find they can't tolerate hot water any more? I used to have my bath water really hot, but these days I can't cope with anything much over tepid; and it just seems a weird development.

pollyanna_26 wrote: »

Personal opinion only I can honestly say this thread is the only group type thing that hasn't made me want to stick my head in a bucket and scream .

Ye gods and little fishes, YES!! I cannot cope with humans in RL, they scare me to death, so this is a really good place to be; thank you for starting the thread, Polly.

Thankfully it's a bit cooler today - I even had to put my coat on to take Cookie for her walk!

I've been teaching her to play "Fetch" properly, and she's coming on really well. Her owners told me to feel free to continue with her training while she's on holiday with me, so I've taken them at their word.

pollyanna_26 · 30 August 2017 at 1:05PM

Hi LW I used to love hot , hot baths nowadays can't tolerate extremes of anything . I never had issues with noise , stupidity or many other things and never understood why my dd would suddenly go into meltdown . Nowadays I can feel pretty murderous at times

You need to take out a timeshare arrangement with Cookie . The pair of you are obviously having a whale of time . By the way why have a buggy if not to go extreme when you're out . Start a little change jar for when you next need a cushion .
We're heading towards a year since I sat quivering over the keyboard wondering if I could even create a thread and whether any one would notice it . So thank you and everyone in that time who made it happen .
As I mentioned at the start these things are usually short lived . We had our winter struggles . I had the whole no landline thus no internet . Assessments and appointments consumed many of us on and off . We are still here and hopefully will remain so .
Take care
polly x

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OS ways and Poor Health

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