Reconnecting with your Body Part
Reconnecting to your body part
As I developed CRPS, my leg was no longer my leg, it became 'it'. I felt such strong animosity towards my foot that I would look at it in disgust as if it were a bad smell. I hated my leg, detested it! Once I wrote 'I dread turning off the lights because it is just me and my leg'. To me it was useless, ugly and wasn't even part of me, I didn’t want it, and would have quite happily taken amputation in the blink an eye if a doctor had offered it to me as an option to stop the pain (amputation doesn't take the pain away). Once I was so desperate with the pain I found myself clutching a large kitchen knife in my hand, whilst glaring at my foot, the sole intention of chopping it off, being rid of it. My thoughts being 'well at least maybe now the doctors will take me seriously.' Thankfully I was stopped by the thought that I would probably still have phantom pain anyway and it would make a huge mess I didn't have the capability to clear up.
Nowadays.... I can honestly say love both my feet and my legs, in fact sounds silly but makes me smile to look at my foot and feel compassion rather than hate! This reversal of mindset is SO important. Reconnecting with my leg was what I believe the first part and possibly the hardest part of the road to getting better. It is very difficult to explain to someone who hasn't experienced what this feels like, and even harder for them to understand.
The other part of disconnection was my inability to feel or sense my foot (other than the staggering pain from that area ironically). If I closed my eyes I could not sense my leg or foot at all it was just a void of agony. The way I explain this is as my lower leg persistently caused me so much pain over the past year my brain had decided to try and detach the area of my brain that represented my foot. I could not connect to it and even trying to think about it increased the level of pain I experienced therefore, to re-establish it as part of my body I had to re-map it in my brain.
It maybe easier to picture it in reverse. People that have limbs amputated can go on sensing their absent limb for years, this is because the whole limb is represented in the brain, and just removing the limb doesn’t alter this representation on the detailed map of our bodies in our brain (known as the Homunculus man).
Whilst with CRPS, your limb becomes misrepresentated in the this area in your brain. The connections to and from it become smudged and confused. Instead of the carefully planned criss-crossing network of roads and dual carriageways carrying messages to, from and around this area of the brain, the highways turn into a confused jumble of hypersensitivity on your brain map. This is why even just thinking about your limb can be painful. (Check out the 'Brain Smudging Clip' on the Links page). So the idea of reconnecting to your limb is like re-drawing this map in your brain. Fortunately for us, the road themselves are still there; they are just not all connecting in the right places at the moment. However the scientist now KNOW that the brain is changeable and can be altered as new connections are made. This process is called plasticity or neuroplascity. This fact was why I knew I could always get better; 'If my brain can change one way, then it can definitely change back another'...therefore there is NO reason I not you cannot make a full recovery!
“Why do I want to connect to it when it just causes me pain?!”
So.... Like many things with CRPS, reconnecting with your affected area takes time, input, patience and self-care. You may ask why bother, when you detest something that much, when the easiest option is to run away from it, well not literally, particularly if it is your leg but to push it further away from you, or try and ignore it completely. This can be conscious, subconscious or a combination of both and is most likely completely unintentional. Unfortunately this has the opposite effect, whereby the body part shouts louder in the only way it knows how, pain so although it may not be a pleasing thought I believe reclaiming your limb is essential step of recovery.
How I reconnected with my leg!
Start by trying to visualise your limb in your mind. This maybe hard to do and /or painful. If so start just above the area and slowly, gently edge towards it. Approach it as if it is a wild animal, slowly, carefully. When you get to the point it starts to become more painful, halt here and gently work around this area, sensing it. Repeat this gently a few times a day gradually progressing towards it. Once you can visualise your limb; you can progress to visualising moving it. Start gently, little, slow movement. For me this was bending my toes, pointing my toes, flexing my heel, circling. You don’t have to move it in anyway, just imagine the motions of doing it.
Reassure yourself and your body part that it is normal and it is ok, it’s just going through a tough time at the moment.
Incorporate this into everyday activities, a few of times each day, so you have reminders to re-engage with your limb, for example each morning In the shower, or before dressing, whilst the kettle boils, whilst the computer loads or every time you get a text message. Little and often is the key, remind your brain its part of you. It really doesn’t matter what you do, think about it, touch it, rub it, show you love it. I got more adventurous as I progressed and started doing around the clock with my foot, mapping out on the floor or in the air at each of the points of the clock face, moving my foot and sensing it in different spaces around my body, to familiarise my brain with it in these positions.
Don’t stress, force or push anything but gentle and often. Do it sitting down for now if standing is challenging at the moment and start doing it once or twice, as this becomes comfortable and easier, gradually increase it too three times, then four, and so on and so forth. Never push it or over do your limit (see Pacing and Graded Exposure Page). The idea is to make everyday things acceptable to your brain again. It’s like teaching your brain that these simple (although agreed can seem scary and daunting to start with) are actually okay. Whilst you are doing these pay close attention to your breathing, do you start taking shorter breaths, are you anxious? Don’t be surprised if you are and haven't noticed till now. I think its understandable, if something causes you pain of course your body will react to it, even if that is just the thought/anticipation of doing the action. What’s more important though is that this anxiety feeds into the pain, tensing the body, driving the feeling of pain in your limb. However recognising it, is a great place to start, if you know these exercises cause increased anxiety, even if it's sub-conscious, you can counteract this (See the Calming the Sympathetic Nervous System pages). Take deeper breaths, exhale slowly, ground yourself and come into the present. Putting relaxing music on may help, something that calms you and your body.
My starting point with these little exercises was just to get my foot on the floor, toes initially. So every time I sat on the loo or was sat brushing my teeth I started for 3 seconds, after a week or so I could manage five seconds and gradually this built up from there. One month later I could handle 20 seconds and this grew and grew, gaining pace. Then I could do it standing. It took about six months until I could stand for one minute with two feet on the floor, and yes my weight was not particularly going through my foot at this point and it was excruciatingly slow BUT it was progress, and I wasn’t going backwards! I also believed then and went on to prove in my case that to be the case that recovery gradually got quicker over time. Slow to start, as the threshold of activity line is so low, so only tiny little steps can take place without going over this. But as the bar raises and a larger buffer regain is created, you can do more without going over the threshold line (See pacing and Graded Exposure Page).
But what is essential is to find a starting point, a small goal. Once this is comfortable then increase it a little at a time. Patience and Persistence!!
Gently rub lotion or oil into your limb or body part. If it's is too tender to touch, rub the area surrounding it. Slowly work towards your limb as with the visualisation. Also work on its brother, massage your opposite limb or side, focus your attention on it whilst you are doing it, so in the moment it is what you have, and as those parts of your brain are active. Stimulating these neighbouring parts can actually be inhibit the area of the brain that are causing the enduring pain.
On my leg I could have drawn a precise line where my foot ceased to be my leg/foot and the agony prevailed. This region then ballooned out from my leg and consumed an area encompassing the whole of my lower leg and extending into the space around it. A friend of mine with CRPS called this ‘the death zone’. Enter at your own risk! Penetrating this zone directly with touch or even thought was excruciating, and the response of combined fear, panic and pain if someone else crssed the invisible barrier. By working along its boundary I found that this area gradually shrank, with the outer regions becoming at first bearable, then acceptable then mine. Exersizes of mindfulness that approached this boundary from all angles or looked on from the outside were also useful for this. Again working along the boundary and slowly, slowly pushing in from the outskirts of the zone.
You may even find like me massaging my leg became a pleasant experience, helping to relieve the pain in that moment. Infact a firmer touch was more easier to handle than a really gentle one. Particularly after doing a little too much, it felt as though my brain was torn between casting it out and rejecting it again, but by engaging with it completely, it often choose made the decision to keep it.
Earlier on, I actually discovered that it was not just my right leg that was super sensitive but the whole right side of my body was more sensitive than the left. For example pinching my right hand hurt more than doing the same to my left. This actually scared me, as I was worried that the CRPS was ‘spreading’. Fortunately I had Tim at hand. He advised that I give other parts of my body attention too, so move from limb to limb with visualisations and also gentle touch/massage. This actually had two effects, the first I became more mindful of my limbs, the second was it helped relieve the pain. I found that if I focused intensely on my left hand for instance, massaging each finger and the wrist, in that moment the persistent burning pain in my leg was less. Also back massage really helped. I think it acts in two ways, it helps relax and calm down the nervous systems but also stimulates one area more predominantly, therefore inhibiting the neighboring area, as I described above. (NB: A big big thanks to my Mum and sisters who would commonly give me back massages and shoulder rubs when I was suffering the most or struggling with sleep. And of course to my fiancé, Matt, who preferred to buy me a massage chair, which works as well!!)
Learn to love it (or at least pretend to at first).
Love and accept it! And if you don't, try pretend you do. Accept is part of you, try looking at it with kindness and give it virtual hugs, smile, befriend it. Tell yourself it's good and you love it, convince your brain that you want it back. I know this does sound strange but imagine it as a broken down relationship, you have to work at it, be nice to them and tell them you love it if you want hope of winning them back, your body part is just the same!
These days when my leg does get sore or starts to change colour, I pretend to hug it with a circle of love and tenderness. A big hug all the way around it to visualise drawing it closer, encouraging it to feel part of me. I also talk and sing to it (in private of course). Yes I know I am sounding crazier by the minute but it has really worked for me and even now after over doing it, if I give my leg time and compassion, I can reduce my leg/CRPS flaring up.
Make it look pretty
Try painting your nails. And yes it was excruciating when it came to take it off. But by regularly changing the colour it made me engage directly with my leg and enter the 'forbidden zone' surrounding it. Also at least when I looked at my foot I could think, well that’s a pretty colour.