Monthly Archives: May 2013

An update on Kathy’s journey – there are 3 A’s in pain

So last time I updated you, I was talking about the big A, acceptance.  That’s still something I am monitoring, as you know I have mixed feelings on it.  I do think acceptance is bandied around a bit as an excuse not to bother trying by doctors who don’t or don’t want to understand CRPS and chronic pain in general.  Scary when it’s your pain clinic consultant!  That said, I’ve had to broach my CRPS in various circumstances recently and on reflection I do think acceptance is something I can hack, well a bit.

One example is my eye test this week – I lost my glasses a while ago and at my last test had been told I “MUST WEAR THEM AT ALL TIMES!!!”, so avoiding the situation wasn’t an option.  Part of the eye test involves the optician asking about current medications and health concerns, and I couldn’t really get around this without having to mention the opiates and CRPS.  On sharing this, with a cringe, I got the overt sympathy response from the optician.  “Oh you poor thing, I could never cope with that, it must have ruined your life”.  I don’t know whether it’s my aversion to any kind of pity or being a Brit, but my usual go to response of a bit of self-deprecating humour came out.  I don’t want to be a “big deal”, I don’t want CRPS to be getting all the attention when I have gorgeous big brown eyes that need checking out.  I played it down, “It’s no biggy, everyone’s got problems and at least mine get me the good stuff!”   Is this another step in acceptance?  Possibly.  I do think I am becoming obsessed with that word now and not in a good way.  *spits*

Now ACKNOWLEDGEMENT is an issue I can sink my teeth into.  That’s empowering, but can be the polar opposite of my stiff upper lip when I focus on why others aren’t acknowledging my pain, symptoms, story, right to be listened to.  I think this was a greater issue that came out of that recent pain clinic appointment.  I wasn’t acknowledged.  Noone wants a fuss made over them (although it’s my birthday today, so you can go for it this once lol), but how do we balance avoiding the pity trip (whether from ourselves or others) with enough acknowledgement of our issues and what is important to us?  Too few doctors acknowledge CRPS as an illness, I’ve already met a couple in person who see it as “just a label”, and I’ve met more who think life is better without a diagnosis or label at all.  Perhaps that’s the case, but how does our pain get acknowledged for services such as benefits without that?  We get seen as moaners, people who “just have a bit of a bad back”, that kind of thing.  We need that acknowledgement to open doors that help us through in life.  It’s a fine line, I know, but it can make all the difference.  It’s all very well saying we don’t need a diagnosis psychologically, but people are different, what they need is individual, and socially/support-wise many of us do really need a label just to get the help we need.

The last A is advocacy – who has our back?  Not the government at the moment, who are stripping the weakest in society of their benefits.  Some of us have great doctors who are tuned into what they need, and others of us feel left out to dry.  I’ve been struggling with my pain clinic this month.  As some of you will have read, my consultant got me out of the door by promising me a place on a pain management programme “within a month”.  This consultant runs the PMP, and is well aware of any waiting lists.  I was stunned and my husband was cynical of the promise but got direct answers that left no uncertainty – I would have a letter within a fortnight, and a place to start within a month.  Nothing there to be misunderstood.  When I didn’t receive a letter, I rang the secretary – and I might be paranoid in pointing out at this point that she has told me previously that she has called ID on her phone.  Four calls over a week were answered by another doctor’s secretary who shares the office but not the phone line.  Each time I was promised a call back within the day, not one time did I get one.  I caved and rang back, to be scoffed at by my doctor’s secretary and told it will be “months and months” before I even heard about the PMP, never mind get a place.  When I explained what had happened in the appointment I was told I must be mistaken, but she would speak with my consultant and ring me straight back.  Did I get a call back?  Did I heck as like.  Another call for help regarding severe new symptoms and possible rapid spread of the CRPS has also been ignored despite the other secretary passing the message on that in her view I needed urgent help.  Still waiting, a week on.  On a side note, my consultant’s secretary is not the only one with caller ID and I have not missed any calls, never mind one from her office.  So advocacy is not something I have there.

I have however used the Patient Advice and Liaison Service (PALS) in the past and intend to do so again on Monday.  I also finally have the acknowledgement of my GP now my diagnosis is in writing and he is finally working with me in getting things sorted.  This has involved the GP going over the pain clinic’s head by referring me directly to the Spinal Chord Stimulator neurosurgeon that the pain clinic refused to do.  It may well also involve a referral to a new pain clinic as I believe the relationship with my current one has irrevocably broken down due to their continuing lack of communication, acknowledgement and support.

Another part of the advocacy issue is that I have received a response from the Secretary of State for Care and Support to my letter to my MP.  I will get it scanned and uploaded at some point when I work out how best to do that.  Check out previous posts on how you can get the government to listen to us.  The Rise Above Pain blog will be moving to a new level in advocacy for CRPS and chronic pain sufferers, I intend to get the ball rolling with a support network and advice packages, and also get some education on CRPS out there to those who can genuinely make a difference.

So that’s where we’re at.  I’m going to keep pushing for support while not giving in to self pity, which is something I really cannot stand in myself.  CRPS can take my nerves but it can not take my often ridiculous sense of humour or determination not to “give up”.  If there are people like me in the UK who want to get this moving forward, please pipe up!

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UK chronic pain sufferers – is your voice being heard? Rise Above Pain!

Well, it has come to that point where my musings about living with pain have become a more pressing need to share information on CRPS and chronic pain, not just because I keep coming up against brick walls, but because I am watching others go through the same.

Doctors who are not current in their knowledge of CRPS (“It’s just a label”, “It can’t be treated”, even “What is CRPS?”) and/or their treatment of chronic pain.  Patients having to go from doctor to doctor until they (if they are lucky) find one that “fits”.  People like myself looking for a UK CRPS support/information group who will support them and get their voices heard.

There are some fantastic CRPS/RSD groups in the US, Australia, Canada and the likes, and yet over here I have only found groups that have closed down.  The groups abroad are willing and happy to support us but we have very little in the way of support and advocacy/education here in the UK.

So, after making sure I wasn’t going to be treading on toes and after a positive response to my contact with my MP regarding the UK situation for chronic pain sufferers, I have decided to take Rise Above Pain to the next level and evolve it into a UK group pushing for education on CRPS (and other conditions should I get the feedback/support from others) and fighting for our rights right here in Britain.

I am hoping to find UK sufferers/carers to help me get this off the ground – until then I will keep blogging away and set up a small forum for us to share our thoughts.  Perhaps a Facebook page?  Let me know what you think.  From now on Rise Above Pain will get you heard.

My lifesaver apps

Hi folks

Been a while I know, had a pretty horrendous flare that left me unable to really use the laptop and I still haven’t got my head around blogging anything other than minor stuff from the phone.  However, it really got me thinking about how reliant I am on some of my phone’s features and downloadable apps.

Many of us have these wonderful smartphones nowadays, running an Android, Windows or Apple operating system.  I can’t say I have any experience of Windows smartphones so for now I will have to leave out references to them, although if one of you has one and would like to pipe up about whether any of the below apps are either available or useful on them, feel free!

 

MANAGE MY PAIN
Android only.
Lite version: Free
Pro version: £2.99

My number one, cream of the crop app for chronic pain sufferers is Manage My Pain from http://www.managinglife.com/  (available on the Play Store too).

As far as I’m aware, this app is so far only available to Android users, but there are other apps by different makers available for other operating systems (just searching now I see “My Pain Diary” for iOS/Apple, and “Pain Tracker Plus” for Windows phones – I haven’t used these so cannot comment on how good they are – experiences welcome!).

The Manage My Pain app is basically a record keeping tool for those in chronic pain, with free hosting of records on their servers to avoid losing data if your phone decides to throw a wobbler.  I have used it for around 7 months now – at first I had the free “Lite” version, which became so handy that I needed up upgrade to the “Pro” to allow myself the space for more records.  Both levels of this app requires an account but it is easily set up and totally free to do that.  I found it very easy and uncomplicated to upgrade from Lite to Pro, and I tend to be a bit of a numpty with that kind of thing.

Below is a rundown of the sections you are shown on opening the app.

Add a record:

Basically here you can create an in depth pain record detailing:

  1. Location of pain.
  2. Other associated symptoms.
  3. Character of the pain – does it burn, throb, ache, stab?
  4. Aggravating factors.
  5. Alleviating factors – including a recent update to allow you to tick whether any of them worked, which is more handy than it sounds.  This aspect means that your results can show whether things like your prescription medications, or heat therapy actually helps or is ineffective and to what extent.
  6. Timing of the pain.  This aspect can be difficult as it is offered in seconds, minutes or hours and at times my pain has gone on relentlessly for days – meaning I sit and calculate the hours in a week for example, or have to make more than one record.  However that’s more my body being difficult than the app and it does allow you to pinpoint whether pain is breakthrough, constant or intermittent at this point.
  7. Environment.
  8. Severity – a typical 0 to 10 rating scale.
  9. Notes – this comes in handy to jog your memory as to anything else you think was relevant or might remind you in the future which record you are looking at.

1 to 5 above are personalisable checklists, allowing you to totally pinpoint the area and character of the pain, and also the factors that help or hinder it.

Results:

Here you can view comprehensive or specific aspect results in various forms such as a summary, pie charts, a timeline, calendar, or just a list of all your records.  I have found certain aspects of this far more useful than others.  For example, other than out of bored curiosity, I haven’t really bothered with the charts.  I have however found the timeline incredibly useful as I can see the pattern of pain levels and whether on the whole I am worse or better than say 2 or 3 months ago.  You can alter the time shown in the timeline itself too.  Regardless of which format suits you for this section, it is worth saying (even though it sounds quite obvious) that you get out of this section what you put in.  If you only have two records, then your results aren’t going to be especially illuminating, but once you’ve been using the app enough to get a few records saved, you’ll be surprised how handy it becomes.

Reports:

This section allows you to create, view and email a report based on your records and results.  I haven’t actually had the chance to use this yet as my pain doctor is, well, a chocolate teapot, and won’t even look at a paper list of symptoms, never mind this.  However, for those of you who have good relationships with your pain doctor, this could be invaluable.  I know of many people who keep paper records of their pain and take them to appointments, and this could be another similar way of making your voice heard.

Sync:

Allows you to synchronise your saved reports with your online account, meaning that you have a backup online, or have the ability to have the app on more than one device.  Or, should you change your mobile/tablet, you know your records are there just by downloading the app and logging in to sync.

My Profile:

This is partly set up when you first register but it totally editable.  Info such as your account information, a list of your pain conditions, and a little “About Me” section personalises things.  There are two sections on this part of the app that aren’t ‘live’ as yet, both relate to your medical information and are “coming soon”.

The last section of the app is About this App and is the usual information on makers, with links to FAQ, a user guide and features page, and contact information.

The Pro version of this app allows you to keep unlimited records of your pain, whereas the Lite version allows you ten at a time – which is doable for the lighter user or one who can really make the effort to blend reports a bit to get the picture they need.  I found it easier just to pay the couple of quid to get the pro version and I’ve certainly got my money’s worth out of it.

It’s not without its problems, but what I can honestly say for them is that they listen to what you’re struggling with and genuinely take it into account for future updates.  I visited their Facebook page fairly early on in my use of the free version and mentioned how it would be helpful to be able to say whether the “Alleviating factors” were actually helpful, and lo and behold, the next update gave that section a double check list for what you have tried and what actually helped (or didn’t).  They seem pretty dedicated to making the app work and work well.

All in all I would definitely recommend giving the free version a try and seeing if it suits you.  Sometimes just being able to look at the timeline of results and say “Well x is obviously working”, helps you see the bigger picture of your pain when you’re struggling.  Or if your pain is clearly increasing, it’s a visual record to show people who should be helping bring that level down – not just a tearful person turning up in A&E without “backup” (as I have done!).  If I used this app to its full potential and had a go with the reports section, I really think it could push my treatment forward too, however as it stands from my personal experience, those in other countries might find that section more useful than I have.  Over here so far the docs I have encountered might scoff at the idea of participating/reading it.  Others might have a different view on that though!  What do you think?

 

MALUUBA
Android and Windows
Totally FREE

The next app I can’t seem to live without at the moment is Maluuba.  I think this app deserves it’s own huge review, especially for those who are blind/partially sighted, as my husband is.  I am going to be a bit shorter in my review of this – it is basically a Siri for iPhone alternative for those with Android and Windows phones.  Actually to call it a Siri alternative is unfair as the two apps have very different approaches to the same tasks.  Maluuba is a voice or typing controlled app that brings together calendar, alarm clock, a Wolfram Alpha information search (like Siri does) and a more comprehensive Yelp.com search and slings in a dash of GPS personalisation, Facebook integration, and other wonders.  To give a couple of examples of what Maluuba can do, here are some voice commands I have tried so far:

  1. “What movies are showing near me?” – brings up local (GPS) cinema listings, times, Rotten Tomatoes reviews, and more.
  2. “I’m sick”/”I’m hungry”, etc – brings together a Yelp.com list relevant to your comment, including links to reviews for the services/businesses you need (eg. restaurant reviews).
  3. “What’s the weather like today/tomorrow/Wednesday near me/in London/etc?” – brings up a local or specific and comprehensive weather report for the days you ask, and more.
  4. Voice controls for opening and searching some apps such as music player.
  5. “Text/Email Lisa and say I will be there soon” – or words to that effect.  Sends SMS messages, emails, reminders, to your contacts.
  6. “Remind me I have a doctor’s appointment at 3 o clock on Friday” – will even send a reminder to someone else you want it to.
  7. All can be linked in to navigation through Maps, calendars on phone/Google, it will even make a reminder for you and send it to anyone else you need to remind or share the information on your Facebook account.

Now that’s nowhere near as much as this app can do, there are more comprehensive guides on the website: http://www.maluuba.com/

I can hear the cogs working, you’re wondering how this is relevant to chronic pain.  It’s not really, but the bringing together of all its functions means I don’t have to open the browser and manually type/search, which is handy when you’re laid up and sore.  That and it’s been pretty fun to mess around with!  iPhone 4s and above users obviously have Siri as an alternative, and Siri does have some benefits over Maluuba, such as being almost its own little character due to its ability to speak the answers to you, which Maluuba cannot do (I have not tested this with the Android Accessibility TTS function as yet – I will update).  Maluuba doesn’t have the funny answers Siri has that have you testing Siri just for a laugh either.  However, I have found pros and cons to both apps and out of the Android alternatives, Maluuba wins hands down.  It’s not perfect, it does have the odd quirk that can irritate, such as not being very accurate at listening as it is still loading and for some reason (until the last update) not having country specific results in it’s “Shopping” section, but it has helped me quite a bit recently, particularly with trips outside of my local area.  I’ve used it to find a place to sit and have a coffee in London, when I was tired and sore in a crowded Covent Garden and couldn’t see the woods for the trees.  I’ve used it to search information on Wolfram Alpha (similar to Wikipedia) without having to open the browser and search.  The most used aspect of this app has been the reminder function, being able to sort out my brain fog by creating reminders for medications, appointments, etc, and being able to share them with others.  It also incorporates my calendars including Facebook and Google, so it has been great for jogging my memory.   It takes up a fair bit of memory space but I would give it a try and see if it amazes or irritates you!

 

TVCATCHUP
Android, Windows and iPhone
Totally FREE

Not the huge review I’ve done for the other apps, but this is a handy app that allows me to watch the free TV channels on my mobile.   Available from the Play Store.  Not exactly groundbreaking, but a boredom breaker when you can’t sit in your living room and are confined to bed without a TV.  How could I live without Judge Judy?  ;o)

 

KINDLE
Android, Windows and iPhone
Totally FREE

Another app I couldn’t live without.   Available from the Play Store or Amazon.com/Amazon.co.uk    I do actually have a Kindle, but I gave it to my daughter as with my pain levels, when I’m laid flat it is cumbersome and digs into my arm when held.  Having the free app gives you most of the benefits of having a Kindle (and if you’re like me and only had the basic wireless Kindle, it adds the benefit of a backlight instead of you needing a lamp).  I seriously couldn’t survive without my books and I have not found a better alternative to Kindle.  There are other similar apps such as the Barnes & Noble alternative “Nook”, and Google Play Books.  I haven’t managed to get into either because I just really didn’t need to – Kindle has a better range of books and I didn’t find anything about this app that made me think twice about trying another.

 

So, at the end of all that, I am going to say that I probably will go off and think “Oh poo, I forgot X, Y or Z” and edit this entry to add more apps.  So, please don’t feel like you’re adding to my workload if you would like me to try an app and review it on this post, or if you’d like to add your thoughts to this post.  Just email me or comment below!

Upcoming posts and more

Just a quick post to apologise for the lack of posts over the last couple of weeks.

My wonderful big sister took me and my daughter to see Pink in concert in London, and we hit the fantastic vintage shops (I’m mad for vintage).  It was a fantastic weekend but has left me behind on decorating, which is hard enough with chronic pain alongside general life!

I have a couple of posts to polish off before posting, one on sleep issues surrounding pain and one is going to be a review of some pampering goodies I am testing for Gelicity.  Not medical products per se but those of us in chronic pain deserve a bit of spoiling every now and then and the Gelicity products were intriguing to me after a friend mentioned them as particularly soothing for aches.  As the name suggests, there’s a jelly/gel connection there that should make for an interesting review!  So far looking very good just down on customer services, I’ve had the royal treatment and feel totally lucky!

Catch you all soon xx