A wheel chair, a tyre and a week
Oh, this week had been one of my favourites this year and reaffirms just how much I love my job. This is the week I finally got to work with an old workshop client for a week straight. The results from a little encouragement, a little guidance and a whole lot of effort on her part, has yielded incredible results!
Part 1- This part of the story starts on the 06/04/2016 when I received this message from Elaine, Lauren’s mum.
“Hi there Fibro Guy, I have just been reading about Lauren. I also have a daughter with EDS Hypermobility type 3 and CFS called Lauren… You have messaged me before after a friend of ours mentioned you on a post of FB… Well, after reading about your Lauren I realised that she had many of the same problems as my Laurie?… Definitely the part of the elongated and short muscles? She is going through a particularly rough time atm. After a fall on the 31st January, she has been having very strong muscle spasms in her hip, which subluxes and dislocates her hip. These are coming, at the best every 3 hours and at worst continually for over 8 hours, needing hospital A&E to medicate for pain and to calm them back down to now one per hour or so?… We would be So grateful if you could spare a moment or two to give us any help/advise??…. We have spoken to all the medical professionals that we have access to and the only thing that they have come up with is, it is anxiety? Which we can see but we need to be doing more if we can… So we have a full on approach atm of cleansing bowel of toxins, relaxation, if possible due to pain… and gentle exercise, which her physio at Stanmore have suggested… But You sound like you could help us achieve more…. (Just to give you a very little bit of history, before Laurie realised she actually had EDS she was training for the heptathlon for the 2012 Olympics, she played football and was 1st violinist in a local youth orchestra, so she’s a pretty determined 23 year old girlie. However, at the moment she has lost a bit of her oomph due to the pain and immobility. Thank you for taking the time to read this and I so hope you can help but completely understand you are a busy man and individual consultations are difficult… But if you could just help with teaching us some exercises to help get her muscles in her hip to stop spasming then we would be forever grateful, we are not expecting miracles lol .. Thank you”
At the time of receiving this message, I was just about to run a two-day workshop for the Leeds Ehlers-Danlos syndrome group. After talking with Lesley (the then coordinator) we managed to book the room for an extra two hours. On the afternoon of the 29th of April, I finally met Lauren. I talked for a good hour with Lauren and her parents and it was clear to see that there was a great family support network at play. However, as often is the case with EDS, Lauren had been well and truly let down by healthcare providers. The constant and quite frankly, brutal, hip spasms which would repeatedly dislocate her hips, were put down at the best guess as ‘anxiety’. We spent the next hour looking over Lauren and seeing what limited movement she could achieve whilst out of the wheelchair, which at the time, wasn’t a great deal. We talked some more and we formulated a plan that would not be too difficult for some one who had not weight bare in over 2 years and which allowed her to progress quickly. As much as I love workshops they do sometimes make me feel a little sad. I have seen so many people over the years and after looking people over I can see how well they could do. Although many go on to achieve great things, there has always been a small minority’s that don’t. I believe that when push comes to shove, without the psychological parts to my programme, some people can just not do it themselves. As much as some people, including my self a long time ago, do not want to accept it, but recovering from chronic pain does have a large psychological aspect to it. I’m guilty of being so physically focused in my early years that it stopped me from helping everyone I saw. It’s important to remember that complex problems do not have simple solutions, correlation does not mean causation and at the end of the day, the body is just simply an extension of the mind. We focus so much on muscle and “correct alignment” that most completely forget that without innovation from the nervous system, the tissue is completely useless. Lauren and her family kept in touch with me over the next few months and it was a very hard time for them all. There were a lot of set backs, the spasms were reduced but they were still dislocating the hip. For a while, it was 2 steps forward 1 step back. But, eventually the spasms ceased completely and Lauren became stronger and got her self on to crutches and back to walking.
Part 2- This part of our story starts on the 13th of Agust 2017.
Whilst sat eating my dinner in between clients I received a phone call. Now anyone who knows me will tell you the chance of me picking up are pretty slim, as I’m with people all day. However, for some unknown reason, I did. To my surprise it was Elaine, but unfortunately, it wasn’t good news. Laurens’ esophagus has ceased to work properly and as a result, she had to me PEG feed and ended up losing a considerable about of weight, ended back up in the wheel chair and starting to weaken. Her shoulder and hip were both out and she had been to the hospital again for pain relief whilst professionals tried to get her hip back into place.
Elaine wanted to know what they could do to stop Laurens hip dislocating and I advised, I sent some online videos, and I hoped they would suffice. We saw a little progress, but Lauren had some problems with doing a few of the movements. This always happens online with certain movements. I can literally teach anyone how to do them pain-free, but, certain ones I feel need me there to reassure people as they have difficulty with them. I have a lot of time for Lauren and her family, they are genuinely nice people. The kind of people who would give you their last Rolo as I like to say 🙂 I knew if I could get Lauren to the studio for 4 hours over 5 days (4 sessions), we could really see some progress. At the time, I had just had a few more people leave and go back to work so my diary wasn’t as busy as it normally is. This seemed like the perfect time! I could easily squeeze 4 hours in and that’s just what we did.
Now this is the important bit and if you have EDS and you don’t have very good mobility, this is important for you to understand. Muscle does not waste away how you think it does! The body is very well adapted to keeping you alive and out of danger, just look at how pain works! Unless you are paralyzed, have MG or another condition, you will keep a certain base level of tissue. It took Lauren 5 days, to go from using a wheel chair, to walking 3/4 of a mile, flipping tyres (I do love my tyres) and running. It’s not magic, it’s just hard work and education. It’s not about strengthening muscles or training “Core”, they are already strong enough. It’s about re-establishing the connection between brain and body. Creating new path ways of action, which always start with intention. The more I push into my love of neuro-science, the more I realize there is so much more I don’t know. This doesn’t scare me, it just shows me that there is still so much to learn. My programme has remained pretty much unchanged over the years, as for why fix something that isn’t broken. However, my understanding of the mechanisms, my delivery and how I interact with people now, say from 3 years ago, is completely different. Lauren came to Newcastle to be educated and that’s what we did. How can you fix something if you don’t know how it works. Knowledge is power and ultimately the key to recovery.
I always appreciate it when people let me write about their journey in the studio, as it gives others hope. Only around 1/10 people I work with are comfortable with letting me write about them. So I thank Lauren for letting me write about her incredible journey and I hope it offers to someone reading a change in their thought process and they realize that there is always something people can do to help themselves. Truth be told, oh and ill piss a lot of people off saying this…but once you take out the people who actualy have EDS, from those with fibro, you are left with a bunch of people who can make complete recoveries. Yes, complete recoveries. If that doesn’t inspire hope and instead you’re getting your panties all twisted reading that, then you need to seriously reevaluate what you are actually doing to get better. Most with EDS can make incredible changes to their lives and live full, active and incredible lives. It’s not just my Guys and Girls doing it, there are people everywhere doing it. If you open your eyes and look for it, you will see it. What you see here is the end result, not the process. Flipping tyres isnt going to stop you dislocating, however, the process will. I’ve always used tyres as mile stone, why? Because the people who come through my door are in pain, they are afraid to move because of the pain. The idea of flipping a tyre scare the Sh#t out of them, but I promise them in a couple of weeks that that’s what they will be able to do. When you go from feeling weak and in constant pain (ive been there remember), to being able to flip a tyre…you feel incredible! I want my clients feeling like they are badass! (they are)
So here is to Lauren and her family! With determination, a little guidance and so much dog hair in my studio it’s going to take ages to clean up :-), you accomplished great things. It’s people like you who make my job feel incredible 🙂
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