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Maintenance

A really important issue for many people with chronic pain – two steps forward and a million back? Shaz writes so brilliantly and openly about her life with CRPS. I would highly recommend you follow her!

CRPS Shazz

HydroIs it just me or do others having difficulties balancing all that you are supposed to do (or not do) with regards to having illness?

I try so hard to be a good patient, take the advice I am given, doing my hours of physio, happy time, exercise but all of the aspects of your life that you are trying to tweak, there is always something that goes by the wayside.

2 days after my birthday at the beginning of June I had a really severe flare again, as bad as Christmas time. Unable to barely move a muscle for the pain. Getting to the toilet was hard enough, changing my clothes and showering just didn’t happen for many of those days. My son of course offered to help me with my clothes but in actual fact I wouldn’t let him closer than 2 metres because the breeze his body…

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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

Acceptance part 1 – achievable peace or the Holy Grail of pain?

acceptance

I’ve been thinking a lot about acceptance.   I’ve held off writing this as I really hate coming from a doom and gloom standpoint and so wanted to be a bit more balanced (?!) before approaching this subject.   It’s not very fair to you lot if I am sat unwashed and unmotivated, cramming chocolate into my cakehole while moping in my ‘jamas about just how terrible my life is, ha ha.

Over the last few weeks, I’ve had a lot of people advise me about acceptance and its role in coping with chronic illness/pain.  Having had chronic pain for over 4 years now, I’m surprised that I’ve never come across this trend before – maybe my brain shut it out.    ‘Trend’ is probably the wrong word, but you follow me.   It seems commonly believed that the key to coping with chronic pain in particular is the acceptance of the hand we’ve been dealt.   You’ll see the idea discussed a lot on web forums and Facebook pages related to chronic pain and specific conditions thereof.   I’d be surprised if you could scroll through a page without it being mentioned at least once, but that alone is no judgement by me on the concept.

Now I’m a skeptical creature by nature, some might argue a bit cynical although they’d be wrong as if anything I tend to be a bit too optimistic and rose-tinted about life, which my family have a good laugh about.    Many a time I’d be gutted as a child when my Dad would point out the obvious mistakes in movies, I always wanted to believe.    I’ll admit that at first I read about this elusive acceptance and wrote it off as Dr. Phil/Oprah school of thought which I don’t much go in for (no offence intended to die hard Dr. Phil fans!).   I can just see either of them telling Americans to “Just OWN your pain”.   You know exactly what I mean so don’t pretend you don’t!  Perhaps I just struggle with abstract notions such as “owning” – as soon as I think of it I wonder how much I could sell what I’m meant to “own” for on eBay.

There does seem to be some clout to this acceptance malarkey though – I found (among others) a 1997 study by Lance McCracken for the University of Chicago that suggests greater acceptance of pain leads to less depression, less disability and even lower intensity pain scores.   Indeed many pain clinics are focusing their pain management programmes on aiding people to accept and therefore cope with their pain better.   That said, the idea of accepting anything bad just seemed inherently alien to me, sure that would be giving up?   Not so, say those who advocate it, acceptance is not about accepting defeat, but is about continuing to live life and be happy, instead of letting pain put life and happiness on hold.   Well, once it was put that way it made a bit more sense although it did sound suspiciously like an end goal that was more of a pot of gold at the end of the rainbow than anything tangible.   At this point I was convinced I’d turned into my Dad, looking for the strings in the special effects.

A little while ago, I got what I thought was an end to the search for a diagnosis and with this came a sense of relief – not at having CRPS, which I wouldn’t wish on anyone, but for an end to wondering and worrying why I was so unwell and losing my ability to walk, and what the future held.   At the time a couple of doctors, independently of each other, suggested an operation which they felt could offer me substantial pain relief and even my legs back to normal.   One even wrote to my pain consultant suggesting he referred me to the surgeon.   Now this was an outcome I could accept, finally I could understand what I’d been advised about accepting my pain and getting on with life.   I revisited the idea and decided, yes, I’d finally got there – things were going to be fine as I had ACCEPTANCE.    At long last I could stop being a miserable git and start living life to the max – like I was finally living the old Bodyform adverts or something.   I mean, come on, those girls could rollerskate in circles AND rock-climb and they only had an intimate disposable product on their side – can you imagine what they could do if they had ACCEPTANCE too?

On Saturday I had my pain clinic appointment.   Now there was no negativity from the consultant, he was great, which was more than I was expecting from our first meeting after having moaned to him in a letter previously.   However, I came out of there and broke down on the roll home.   I moped for 48 hours solidly and completely ignored the good that came out of that appointment, like the place on the Pain Management Programme I’d wanted, and the go ahead to come off two drugs that have given me pretty significant side effects.   What had me moping?  All it took was the advice not to get my hopes up for the operation I was pinning my hopes on, and the advice that medicine wise there’s nothing left to try.   There was also the knowledge that all they could do for the loss of sensation in a rather delicate area was offer me counselling to learn to, yes you’ve guessed it, accept my problems.

Now in hindsight it’s clear to me that my acceptance was a fair-weather friend – there while the future was looking rosier and *poof!* gone at the first sign of hurdles.   It’s certainly true that while I thought I had that acceptance, I was coping with my pain better.   However, accepting and embracing are two different concepts and my God I can embrace pain when I’m miserable, but I can’t accept it.   I spent nearly two days positively relishing my higher levels of pain as it reinforced my miserable attitude that life was again, totally pants.   Acceptance and I were on a break.

I can hear you thinking that I wasn’t going to be miserable and down in this post – well that’s the miserable bit over and I’m only being honest.   I am not posting this for sympathy or for anyone else to give up trying to feel better.   The last thing I want is for anyone to feel like I felt on Saturday afternoon, but I do wonder if it’s better to be prepared than to be blindsided by believing we’ve got there only to have it crumble?   I haven’t given up the hope of accepting and managing to feel okay about things more regularly, and I’m going to keep posting back, honestly, about how that’s going.   What I hope for out of this post is that anyone else struggling to accept their pain reads it and thinks to themselves that others are out there struggling to accept too, and that’s okay – hell maybe it’s even normal.   There’s no point in us adding to the list of things we already beat ourselves up about by worrying we’ll be seen as pessimistic or revelling in being a victim, and perhaps, just perhaps, there are more practical ways to improve our situations at least in the short term while we get our heads round things or wait for a clearer picture of the future?  Maybe acceptance will creep up on us when we least expect it.   In the meantime maybe it’s just as good to accept that we don’t accept……yet?

Support/awareness jewelry

Suzanne is one of our US followers and has RSD/CRPS. She also has a real talent for jewellery making and this is a post about her awareness jewellery, with a link to her web shop. I would highly recommend that our readers have a visit as her jewellery is just gorgeous.   I keep looking and wishing I could buy the lot!

Edited to add:  Suzanne has let me know she ships her gorgeous jewellery internationally, and makes awareness jewellery for all sorts of causes, not just CRPS.  xx

Tears of Truth....

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“Support in Jewelry”..http://www.freewebs.com/jewelrymkr is the website to visit if you wish to find these beautiful pieces of jewelry to help with awareness for the general public, and for patients!

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