Flares are so last season

Hi folks

Well you might have guessed from my relative silence recently that I’ve been in a bit of a flare-up, so I wanted to use this opportunity to write about something I’ve been looking into, but haven’t taken the leap with – the flare plan.

The basic concept is to have a plan, not just in your head, of what to do when your pain increases to a level that needs affirmative action.  It sounds fairly simple, but I haven’t got to the point where I am quite organised enough, or even knowledgeable enough, to put the thoughts into a ‘proper’ plan.  I’m still in the “I know what I’m doing……oh my GOD it HURTS, what do I do, what do I do??” stage!  That and I think I had a few preconceptions about whether it was all pointless or ‘shutting the gate after the horse has bolted’, which is something I would invite you to discuss in the comments.   It’s also only recently that I’ve come to realise that these things are going to keep happening from time to time and I have to know what to do other than ploughing meds into my trough and hiding under the duvet (although I suspect those two approaches will make their way onto my plan still!!).

From what I have read, the idea is to compile a list of things you need to remember, or have on you, at times when the flare grabs you.  I have compiled some links that might help you guys to make your own, I will bob them at the end.  The following is a basic set of ideas to add to yours.

  1. A list of medications, timings and dosages that you can take.  We all know how pain can muddle our thoughts and although we consider ourselves self-medicating experts (or I do, dunno about you!), I think it’s fair to say we’re at risk of forgetting what we had and when at times when that pain is blinding.   I do think that this just written on a card might be useful to some but reminders may need to be on mobile phones/watches/from family at this point, so it would be important for a copy of the plan to be available to whoever’s living/working with you, OR timers set on your phone/watch if noone is around or you want to maintain independence (eg. at work).  While you probably won’t want to be setting reminders on your phone while you’re in a lot of pain, make a note of when you took your top-up medication if it was different to normal timing/reminders – a family member could jot it down, or you could even set the stopwatch on your watch/phone so you don’t forget how long it has been since you took them.   Top-up meds are the ones I tend to struggle to remember as I obviously don’t always start taking them at the usual times I take my other medications.
  2. Contacts – who can you ring to help?  Do you have a friend or family member who you’ve arranged to come over when you need or who can talk to you on the phone when you’re feeling pants?  I would also recommend having your GP’s number and other medical contacts so noone has to go hunting them down if they’re needed quickly.  If you have children, or other responsibilities that others may have to take over for you, it’d be worth having a list of contacts relevant to those too.   As a side note to this I have thought it might be useful to have a record of anything that your carer/family/colleagues may need to take over for you while you are struggling, just in case you’re medicated or so sore you can’t remember/communicate what needs doing and when.  Not sure how this would work as part of a permanent printed flare plan but something to consider.
  3. Personalised information on what you know helps you.   So for example if you find relaxing music is a must for you, have a reminder on the plan for yourself or those around you of which CD and where it’s kept.   You might want to remind yourself to focus on your breathing if that helps you.  If you like using a TENS machine, remind yourself to use it, what level, what programme.  It sounds really basic but you might forget in the brainfog of pain.   This is the part of the plan where I started wandering off in my head about how to organise things, and after discussing it with others I’m not alone on this – I want a drawer or cupboard in my bedroom that I know will contain the things I need in a flare at all times regardless, and I also want a miniature ‘box of tricks’ when I’m out and about, probably just the basics to get me home in an emergency.   My drawer won’t just contain my medication, but my TENS machine, heatpack, a damn good book, headphones and my mobile charger among other things.
  4. Exercise versus rest.  A lot of guides suggest having part of your plan dedicated to outlining how much rest you are allowing yourself and how much exercise you are going to keep at during a flare.  Keeping mobile may seem impossible when you’re in a lot of pain, and you won’t hear me lecturing on this subject as I’d be a huge hypocrite.  All I want to do is lie in bed when I’m sore, but I also know it doesn’t help me personally.  I’ve started pushing myself to do a very limited and safe amount of exercise (in my case a very gentle 5 minute walk to our local park, with a sit at the other end to feed the swans, or if I’m totally incapable of that, some stretches in my bedroom) to try and keep myself from seizing up.  I’ve found if I just wallow and lie in bed, my pain takes longer to resolve and I am lower in mood.  I really am a lazy sod, so admitting that I have to exercise even in my own piddling little way, is a big leap!!  I wouldn’t want anyone reading this thinking I was advocating running a marathon when you’re feeling rubbish.  I’m no fitness queen, I’m just determined not to let a flare pin me down for any longer than necessary.
  5. Controlling your thoughts.  You might have gathered that although I’m a bit of a liberal hippy at heart, I also have a Yorkshire/northern attitude towards “arty farty” concepts suggested by people who aren’t necessarily experienced in the reality of this kind of situation.  So you can trust me when I say I’m not trying to pedal any pop psychology, and ultimately this is your plan and you can choose whether or not any of the above pointers, including this one, are right for you.  I have found that in emergencies with my kids/family/friends, I go into an automatic “nurse mode” – the emotions switch off and I just “do”.  If I allow myself into negative thinking, first of all it spirals into panic, and secondly my bossy Yorkshire (?) attitude tells me I’m being a melodramatic idiot (yeah, I beat myself up a bit sometimes).  So I have been asking myself why I let myself focus on how terrible the pain is effecting me when it’s my turn to be the “patient”?  Of course I still do it, I moan to myself in my head that it’s terrible, unfair, never going to stop, and that I can’t cope or am weak, etc.  The result is of course that I’m so focused on the pain and these thoughts that my mood gets lower, I am less motivated and any distractions from my top list won’t work a bit.  So I do think it’s worth mentioning this suggestion, as “arty farty” as it reads at first glance and as much as I haven’t yet put this part into practice.Positive affirmations such as “It will get better soon”, or “This won’t last”, or “I am strong and will get through this” might be a bit of a push to some of us cynics or negative thinkers, to others it might be immensely beneficial.  I would recommend keeping these at least realistic – telling yourself you’re not feeling pain or feel great is not going to get you anywhere.  In my case I’m going to try getting into “fight mode” and that might involve a few choice and profane words directed towards the pain and maybe even myself if I’m being a whinger.  I’m not suggesting any of you try and bully yourself out of your funk, it’s probably not a great idea for most.   My recommendation would be to at least to try and distract yourself from focusing entirely on the awfulness of the situation.   Some might find focusing on surviving the storm, or winning this small battle or that kind of concept easy, others might find it a bit vague.I was advised to remember that chronic pain is most often not a sign of new injury and you have most likely not damaged yourself further by having the flare.   It might help to see it as a reminder from your body to listen to it’s messages, and in the time after the flare it could help a lot to look back at what you consider to be the first signs and potential triggers of what you’ve experienced.
  6. Emergency instructions.   Some people carry a wallet sized card of emergency instructions for medical professionals that are related to their specific conditions and some add it to their flare plan.

OK so I turned the basics into an essay yet again, so I will leave you lot to have a ponder on whether you think the flare plan is a good idea, and if so what you think about the ideas I found from those websites.   Here are the links for anyone who wants to have a read, feel free to message me with any more you find:

Health Talk Online – Coping with Flare-up 

Action on Pain – Plan for Flare-ups

Pain Concern – Flare-up Planning

London Pain Clinic – Coping with Flare-ups and Chronic Pain

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Posted on June 8, 2013, in Chronic pain conditions, Flare/emergency information. Bookmark the permalink. 4 Comments.

  1. Great post Kathy, so very important. I just did a post a little while ago about my pain toolkit so we must have been thinking alike 🙂 I use a TENS machine a lot and when you speak about the brainfog it is amazing how long it can take me to go through all of the steps of connecting the machine and having it running while it is on my arm. I just seem to wander off halfway through the task, just completely distracted. If my teenage son is around he just quietly jumps in and finishes the steps for me. Thanks for sharing. Hope today is a relatively good one for you. xx

  2. Reblogged this on CRPS Shazz and commented:
    What a great post by Kathy and such an important topic too.

  3. Dear Kathy and readership,

    Have you considered treatment options outside conventional medicine?

    Shaolin Wahnam Qigong (sometimes spelt and pronounced Chi Kung) is a moving meditation which overcomes illness through stimulating the bodies’ innate ability to heal itself.

    Here is a testimonial of one of my colleague’s journey out of chronic pain;

    http://www.shaolin.org/comments/jean.html

    Best to you and yours,

    • Hi Andy

      Thanks for the reply! I am hoping to be able to write of any alternative therapies as and when I experience them. I have used Tai Chi in the past (a basic course at a community centre) but that was before I had my pain. Worked wonders for stress and sleep issues at the time and I really wanted to take it back up. Unfortunately I cannot find anyone teaching these kinds of courses in the community who will take on someone with mobility problems and to top it off I am not currently allowed to take any exercise classes due to the restrictions of pacing under the pain management program. I would love to though and those readers out there who have checked with their docs that they are allowed to do this kind of thing – give it a try!

      Obviously remember to seek a GP’s guidance when considering any alternative therapies.

      Thanks again

      Kathy
      xx

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