10 things of great value and assistance to me

We all have things that keep us going, and tricks we use to lessen our symptoms. Without certain items we would have more wobbly pain-days. Here is the list of the top ten ‘things’ that I find keeps me going and helps me to manage my pain levels.

1. First and foremost is not a ‘thing’, they are the people in my life. My fabulous boyfriend (aka Magic Dude), and those of my amazing friends and family who have hung in there even through the very weird period of time where my cognitive issues caused all sorts of problems without me knowing it at the time, as well as my new friends who I already feel like I’ve known and loved for decades. You are a-ma-zing. I love you all. Thank-you. You are the shining gorgeousness in my life that keeps me going and keeps me grinning, xxx

2. My beloved laptop! Which I don’t love for the spec’, or the brand, or the colour, (it’s statutory black and it does what it was designed for), but for the access it gives me to the wider world as well as the flexibility to use it wherever my body can handle being at the time.

3. So I’ve got to include the laptop stand, of course, because that is what allows me to use the laptop in bed or on the sofa without having any weight or pressure on my legs, (which would send the pain rocketing if it did).

4. Oh, in which case I have to use another number being grateful for the Wifi connection, which removes the painful frustration of wires limiting my comfortable seating options! I feel a bit cheeky including aaaaaall of the wonderful people in my life under just one number, now, hehe. I didn’t really create any rules for this list, so I’m just making them up as I go along! 😉 At least I have six more numbers left!

5. Tea! Oh I am grateful for tea! Tea definitely keeps me going. 🙂 There’s some amazing psychology involved in my drinking tea. I grew up in a house with no heating, so the first thing we would do on returning home is put the kettle on. A cup of tea was both warming and comforting. It became a habit, even in warm months, and by the time I lived somewhere with heating the original reasons were moot. I was a Tea Drinker! The amazing psychology for me, and for many people, is the wonderful calming effect it has. It makes me pause for a moment and just ‘be’. And that’s no bad thing. (I am aware, of course, that caffeine excites the nerves, so I drink it weak and I have different fluids during the day as well, but nothing beats a nice cuppa)!

6. My mobile phone. A practical choice. I hardly ever use it other than to check the time so that I don’t go over my physio’ limit and set higher pain levels off. But it is a reassurance when I am out alone as it means that I cannot, in effect, get stranded for too long if I take a turn for the worse. Thanks to the phone in my handbag, help is always a phonecall away and I can dare to physio’ a bit further than I would without it.

7. I have become a dab hand at ‘controlling’ my pain levels and make sure that I am near seating when I know that my pain is ready to soar, but nonetheless I should mention walking aids. Sometimes I’ll take my fold-up walking stick with me and hide it in my bag just in case I need it. (It’s a great magic trick! If you’ve got one… watch the faces of the general public around you as you miraculously keep pulling a massively long stick from a smaller bag! 😉 ). I take it with me if I get sharp warning twinges before I leave the house that could develop into something more. Or if I am unable to exactly plan my outing with regard to rest stops, then I take it with me so that it’s there as back-up in the event of any unforeseen eventualities. I am so stubborn and determined to do ‘proper’ physio’s where I carry all of my own body-weight that the crutches only ever come out now if I literally cannot take any weight on one, or both, of my legs owing to seriously severe pain. In those cases they at least enable me to get to the loo. And they allow me to rest the leg(s) to get them back to a more viable state more quickly. (Then I’ll carry on physio’ing). And the wheelchair only comes into play if I know it’s going to be a long day out. I only can handle so much activity each day, that’s how I ‘control’ the pain levels. (I’ll write a post about this when I can). So any more than that and I need wheels. Although the pain also rockets when I’m stuck in the wheelchair, it’s not a comfortable position at aaaall, so I prefer to factor in a coffee shop stopping point for a looong rest where I can use one chair to sit on and another to put my legs up on.

Ta-daaah!

8. Blankets and cushions are brilliantly useful. Keeping my legs warm keeps the muscles from tensing up and the pain levels down. Just as cushions can be used to ease any pressure points (my left hip is a prime misbehaver since the ligament was torn by a very silly specialist, and the pain there is either ‘bearable’ or ‘screaming’, it doesn’t do shades of grey), or to raise my legs to help calm down the pain in them, or to keep my neck from spasming and setting off a migraine in the car, as well as supporting my head when I’m using the laptop to avoid migraines as much as possible at home. Very handy everyday items that I could not be without. If I was without these in my life I would experience a ‘lot’ higher pain levels day-to-day.

9. Hmmm, on the same vein of usefulness is my hot water bottle, complete with furry cover. The cover is important because I need warmth, not burning! I use it for my legs pain. Like with the blanket it eases the pain in a similar way. But I use the blanket all of the time, whereas I turn to the hot water bottle when I cannot ease the pain myself without an external heat source to get my muscles to consider relaxing.

10. Notable for its absence thus far on my list is pain medication. Unlike patients who are lucky enough to be taken under the wing of a pain management team with knowledge about CRPS, I was one of the many patients who ‘fell through the net’, as it were. After six years with CRPS I received a diagnosis, but I still didn’t meet any medical practitioners who knew what to do about it other than show me some physio’ exercises and send me on my way. As a result I had nothing but exercise information and some painkillers from my bemused primary care doctor. So that’s what I did…I did the hideously painful exercises every day for a loooong time, (I’m unbelievably stubborn, as it turns out! 😉 ), because, hey, what was there to lose? I was in pain anyway, right? Eventually my ANS took the message on board and flicked a switch somewhere – I turned a corner in the behavior of my pain and so began my lifelong physio’ ‘control’ of my condition. (I seriously will write a post about this stuff, xx). I eventually got to the point of stopping the prescription painkillers. (I hate the floppy, vulnerable body, wafty headed, dribbly mess they turned me into, anyway). So now what I take with me when I go out is over-the-counter co-codamol painkillers, and over-the-counter anti-inflammatories. They’re with me in my handbag, but they remain untouched unless it’s a pain emergency. The painkillers are taken occasionally, (usually in phases of pain-flares), but the anti-inflam’s are taken rarely (only if a migraine is too far gone whilst I’m away from the house) as long term use of anti-inflam’s isn’t good for our innards and I figure that I’ve got enough on my plate already! 😉

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Just a few weeks ago I would have included a flask of weak lemon cordial right near the top of the list. I took it everywhere with me because of the severe and continuous near-fainting meant that I needed to constantly top up my body with fluids. But the symptoms have calmed down to more manageable levels now that I’m taking new meds for it. I always take some if I’ll be doing activity, though, like when I go to my Tai Chi class. It may be something I have to start carrying around with me again, but I shall wait and see until the meds trial period is up, and see where I am ‘at’ then.

So, there you go. My list of ten(ish) things that help to keep my pain levels a bit more on track.

What are your ten things? Do any of the things on my list help you, too?

x

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2 thoughts on “10 things of great value and assistance to me

  1. Marie!!!! I love this! So funny the things we all have that help us. you mentioned the ANS took the message. I too was un-dx’d for even nueropathy for 5 yrs after injury. Even with that dx, having work comp insurance I got little to no help?! Is that why the ANS kicks in? I know the lack of care stirred up my Auto Immune system that was going bonkers trying to fix “something”? Still w/out Drs here that are willing to look into this stuff, still trying to be back into care! Finding you was a great blessing in my life!! Kudos for all the work you do for awareness! ❤

    • Hiya lovely Marge 🙂
      The ANS is involved in CRPS anyway (the pain signals are sent via the ANS) so it’s already faulty in our bodies thanks to the wonky and amplified pain signals that we get. The intention with ‘pacing’ our physio’ (same amount of activity each day regardless of whether we are feeling good or bad) is to re-train our ANS not to freak out when we get up and do stuff. If we consistently stop after a set time then eventually the ANS should withhold it’s moaning minnie tendencies as long as we don’t go over the usual daily activity duration. Well, ‘withhold’ as in less silliness anyway! It definitely did make a difference in my body, but it took me 18 months of sticking to the times before that switch clicked in my ANS somewhere. The instant change was that my pain levels calmed down much quicker after activity than it did before. I was amazed at the suddenness of the change.
      Some of us get other autonomic issues triggered along the way (okay, more like a lot of us but I’ve got no figures here to fall back on! 😉 ).
      CRPS is also associated with auto-immune issues and the CNS, as well as neurological re-wiring but most doc’s have not been updated and still think of it as ‘just’ a pain condition.
      I’ve got extra references and snippets of info’ to add into the ‘What is CRPS?’ page when I can, but currently I’m still accumulating and organising information for the papers I’m writing. Once that’s done it’ll be fairly straight forward to update on here, but I think the ‘What is..’ page is gonna get a complete re-write with sub-headings to make it easier to look things like this up.
      If you need any research paper back-up to help get doctor support then let me know hon and I’ll have a look for you. You are a human-shaped ray of joy and sunshine in my life, you always find the silver lining and I tip my hat at you! So you see, finding you was pretty darn fabulous for me too! 😀

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