Ehlers-Danlos Support UK
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New Year's Resolutions

Happy New Year to all! I like the New Year - a time of hope and renewal, and another Christmas survived.

Christmas for me is the time of year when all my failures to plan, clean and organise come home to roost. I nearly got a divorce from my family after the entire week of mostly solo cleaning it took to get my house into a condition whereby Christmas visitors could walk safely from the back door to the bathroom. (Resolution 1: more daily cleaning). Admittedly, it is my fault there are 5 wild hedgehogs in the kitchen receiving treatment, but the rest is down to them too!

Then I spent from Christmas until yesterday in varying degrees of intense pain, juggling what medication I had, having subluxed (no pain) something in my hip, and then torn (much pain) the exact same bit one day later. Happily, I had both diazepam and naproxen in stock from identical previous episodes! Yay!

However, the unintended effects were comical. Because I couldn't get on my knees to clear the shower drain blockage, my teen son (instructed to take only short showers, but doesn't understand the concept) caused a tidal wave in the bathroom, which came straight through the ceiling on New Year's Eve (ceiling needs new plasterboard and completely repainting) and poured onto my laptop (recoverable - thanks to IT husband) amongst other things.

So onto my other New Year's resolutions: I had noticed for a while now that the muscles in my bum and upper legs were becoming smaller, tighter and weaker. I am feeling much less stable - directly leading to recurrent episodes of subluxed, pulled, strained and torn muscles and ligaments within hip area. So whilst Number 2 resolution is to continue a low carb diet for both diabetes control and weight loss, Number 3 is to fix my growing weakness and instability. But I cannot afford a physio, and the NHS near me (a weird administration area in Yorkshire) only give you 6 sessions per condition and that is all. I looked into Pilates and it turns out only Yoga and strenuous stuff is available locally. Previously I have gone to a gym and done strength training, which I think also works.

Earlier this year I bought and downloaded a pdf of the Muldowney protocol.

My questions: has anybody else got the Muldowney protocol or done it? How good is it? Can you do it on your own without a trainer or physio?

Also, is there a Pilates video course online which you recommend? And (rather desperately) are there any groups of physios or personal trainers who do charitable work in Yorkshire?

Finally, what are your New Year's resolutions, if any?

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Hi Jay. Happy new year!🙂 Firstly may I say how wonderful to be caring for hedgehogs, they need all the help they can get. I am a massive animal lover and campaigner for animals so Thank you!💌

You have certainly had an eventful Christmas, and I hope things are getting back to 'normal' for you now. I know the Christmas period can be stressful, even if like me, you dont intend it to be.. For me, Just having people round at the house can be exhausting, and of course some preparation beforehand is necessary. But I must admit, I have managed to get to a point in this life where I can now 'almost' avoid the stresses of Christmas (resolution, to spread out the buying and wrapping of presents) I have become more able to accept what I cannot do (an ongoing resolution which is proving a success,but I still need to remind myself of it) and I no longer worry what anyone else might think about it ( a successful ongoing resolution🙂)...

But the 'Brain power' required for organisation etc and the 'different routine' of visiting and accepting visitors - only if I'm able- does leave me a little disheveled, and certainly fatigued - these occasions are limited due to my state of health; severe Autonomic dysfunction, orthostatic intolerance as well as all the other pains and symptoms- but it is lovely to share in the memories even if only briefly. But I am somewhat distracted by trying to 'keep it all together' physically & mentally because of the pain and symptoms...So I am glad when it is all back to normal.. I try not to dwell too much on the fact that it would have been different..'if only', because it is how it is, and it's the best I can do! (resolution,apply mindfulness to ALL aspects of my daily life..It does work👍🙂)

As far as my medical journey goes, I have never heard about the NHS physio referral or podiatrist made in August, and so I will purse these privately. I'm currently reading about MCAS - Never bet against occam by Lawrence B Afrin- and recognise this applies to my unidentified symptoms, so I would like to pursue this line with a specialist at some point.

I hope you manage to get the physio you would like. Its disappointing to find with our diagnosis we are left to get on with it. Where I live I find self management the best option due to lack of knowledgeable Doctors...I have a yoga ball and dvd of Pilates on a yoga ball. I haven't been able to do it yet, but when I can I will give it a go🙂

It is my sons jaw surgery in a few weeks and so we plan to just get through that first.

Good luck with all your plans and resolutions.❤ xx

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I think I need to adopt your resolutions too - what a fantastically positive attitude you have! And good luck with your son's surgery - I know we all worry more about our boys than about ourselves.

Just back from drs after spraining the same area again (so so painful now), and an agonising night trying unsuccessfully to sleep. The dr wanted me to self refer to the NHS, and gave me the website address for some more physio appointments, but I explained that you only get 6 sessions and I need something much longer term.

Happily, I have made contact with a personal trainer who is willing to give the protocol a go with me and give me a big discount on booking long term, but he'll have to wait a couple of weeks for my repeated injuries to heal.

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I really hope it all goes well. Please keep us informed xx

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Good Luck to you and your sons jaw surgery ❤

You are truly inspiring to read that you have accepted your capabilities or lack of. I'm just starting this journey. I recently closed my business of 17 yrs and find it difficult to admit I CAN NOT DO something. PIP have declined my disability and written that I CAN DO everything... this just throws you back to steps further. I am however appealing this decision as my dearest oldest friend has told me I must tale the Superwman Cape off and put it in the closet and let no-one tell me to put it on.

So my New Year is facing facts and accepting what I can and can't do. A bit of a journey...but if I can climb Mount Everest surely I can climb my own mountain.

Thank You Tilly for reminding me it's okay to keep my Cape in the closet.

With admiration

Lesa 🌻

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Hi Lesa🙂. I hope you are as well as you can be..I can understand what you are dealing with, it is a challenge in so many ways.But having a diagnosis at least puts us on the correct medical/ holistic path and able to pursue appropriate help and care..

Having lived an independent life does make it extremely difficult to accept that our abilities have changed. That has been very upsetting for me as a fiercely independant single woman. But overtime, I've found I have had to accept my new life in order to enjoy it -and not cause myself further injury, illness or pain- and get on with what I can do rather than be grieving my old life..

It takes time to adjust. Some situations still present themselves to me where I have no choice but to 'put the cape on' (as there is no one else there going to do it) But moving furniture to hoover behind for example, is a thing of the past!..and who cares🙂 Changing mindset is the key.

Thank you for wishing us good luck. My son is having surgery next Monday.. Good luck for your PIP and very best wishes 💟 xx

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Thank you Tillyray, I admire your outlook ☺and am trying to get to that conent space. I can feel myself listening to my body more. Acceptance is the key isn't it? I just need to pass through that door.

🌻🌈xx

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Tillyray Best wishes for your son's surgery soon.

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Thank you so much Jay. 💟 xx

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