I would like to start this article by saying that hypermobility varies in severity and symptoms from person to person. For some people it is severely life limiting and for others a minor nuisance. I almost didn’t want to publish this post after writing it because I felt that I wasn’t struggling enough, that my symptoms weren’t as bad as it could be. But then I saw a post on Instagram about that in-between stage of a condition where you’re not able enough to keep up with your previously able bodied self but also don’t feel you are deserving of the label of disabled because it would in some way take away from those experiencing greater difficulties than you.
I decided that I wanted to share this story with you so that you get to know a little more about me and to illustrate that there’s a whole spectrum of physical (and mental) disability/limitations that people everywhere experience every day. There are days when I look (and feel) able bodied, there are others where I struggle and most people wouldn’t even know.
Life before motherhood
Before having my daughter (about 2 years before) I had been suffering terribly with pain in my feet, legs and hips after walking even the shortest of distances. I thought it was arthritis or something similar so I got a GP referral to a muscular skeletal specialist and later a diagnosis of hyper-mobile joints.
I followed the advice of the specialist, did the exercises given and lost weight to help reduce the weight my joints had to carry. All was well and to be honest I didn’t give it another thought, I was back to my old self. No running was allowed, but I could happily live with that restriction.
Roll on pregnancy and that pesky relaxin caused havoc. I could barely walk anywhere without terrible hip & back pain and a little sciatica to boot. I had a support belt which helped but I was pretty much house/car bound. I gained more weight than I would have liked (mostly due to the complete inactivity) and I could not wait for our baby to arrive so I could get back on with life.
Once she’d popped out I felt amazing! So much lighter (I was HUGE pre-birth). I felt like a weight had been lifted off my joints and I could walk again, it was amazing! So again I didn’t think much of it.
Around 6 months later and the tiny newborn was no longer so tiny. I was struggling. My back pain and hip pain were starting to niggle. I was still breastfeeding which in hindsight may not have been the best of choices in terms of my physical challenges. But I plodded on and hoped that when I stopped feeding and the relaxin disappeared I would “go back to normal”.
Sadly, normal did not arrive
Instead I had an increasingly heavy toddler who wanted nothing more than to be picked up, A LOT. My body struggled under the load. My left shoulder and right hip repeatedly rotated towards each other across my back causing me lots of lower back pain as well as shoulder and neck pain. I was seeing the osteopath sometimes as often as twice in a week when it was bad. She taped me up, put me back together and told me that my daughter (who often came with me to the appointment) was way too heavy for me to lift and I should stop.
Things got a little bleak
I was at a stage where I was being fixed more and more often and as I read about hypermobility more (and Ehlers-Danlos syndromes (EDS) ) I found myself feeling very bleak about my prospects of getting anywhere close to normal ever again. I struggled to drive to the super market and pick up a handful of things without hobbling back to the car. I couldn’t stand long enough to dry my hair or do the ironing.
At this point I found myself considering how my future might look. Hypermobility can spiral once you start having repeat injuries. My joints were too weak and my posture to uneven to contemplate exercise without a huge risk of injury but inactivity makes it worse too. It’s the finest line between the two and the slowest road to recovery.
I worried that if I kept spiralling I’d be completely immobile and if I was like that in my 30’s what was I going to be like at 40, 50 or 60, would I make it that long? What kind of early childhood was my daughter going to remember? One with a mum permanently resting
Hypermobility is an invisible condition and one that can come and go for days or weeks at a time. On good days I’d look like any other
There was a huge part of me that didn’t want to acknowledge that I had any sort of physical disability. Like admitting it would be a point of no return, turning my back on any hope that I could bounce back. It felt like if I continued to push on and refuse to give in I might be one of those people who beat all the odds and could run a marathon despite what professionals had advised.
Towards the end of 2018 I started to see a physio who had experience in hypermobility and it quickly became apparent how weak my weak joints were. The exercises she gave me were miniscule, you could hardly tell I was doing some of them. She also explained to me that “hanging off my joints” was worse than walking (when my big muscles could take the strain), which was why shops and parks are a killer – lots of “hanging” around. As the muscles that over compensated for my hyper-mobile joints got tighter I had more and more problems.
To add insult to injury I felt sluggish and lacking any vitality. Sleep had never been great since having my daughter but it was all catching up with me and I was so fatigued and fed up. My energy levels were non existent. I had zero motivation and no mater how much I tried to focus and will change to come, I rarely seemed to have the energy to see it through, or I would and then crash at the end needing more rest to recover. Something had to change. I was miserable.
In my darkest
And that there was where the turning point began. With a tonne of mindset work and looking at what could be if I stopped placing restrictions on my thinking, I started to emerge from the fog.
I also started to address my lethargy and exhaustion from a nutrition point of view too (which I’ll talk about more in another post because that’s a biggie in
I began looking into my cycles and my hormonal balance too. Since having my daughter I was definitely having massively different hormonal responses at different times in my cycle. What I discovered too was that my hypermobility felt worse and I was able to do less at certain times of the month.
With my cycles better understood and my energy levels starting to rise I started to make time to walk alone (without my daughter – without having to hang around waiting for her or having to pick her up or bend down – simple things you take for granted when you don’t have to think about pain). I started to realise that I could walk if I just kept going, well, for a bit further than I had anticipated at least.
I used to say to my husband, I don’t want to run a marathon, not even a 10k, just to be able to do simple every day things like walk to the park. And that’s what I’m aiming for. One walk at a time.
I slowly started to feel more human. I started to feel more me. That shell of a woman that looked back at me in the mirror started to look a little more recognisable. I could start to feel motivation, drive, purpose & joy.
As it came back slowly, I started to become interested in motivation, determination and drive as a subject matter and began to read books about what it is that motivates us. I had a very strong feeling that although our mindset and outlook on life were huge factors there was also a part played by our physical health in terms of hormone balance, key nutrient & mineral balances that impact on our brains ability to function. I believe that when we’re deficient in key nutrients/sleep our brain struggles to operate beyond simply keeping our body surviving. I researched adrenal fatigue, burnout and the impacts key nutrient deficiencies have on our brains and I will share as much as I can with you in future blog posts along with the links for you to find out more for yourself.
It was in that search, that desire to be more organised, more driven, more motivated and more determined to achieve the life I wanted that I started to create tools that would help me along the way. Planners and organisers, charts and trackers. It it these which form the starting point of Pockets Full of Time.
Can I run a marathon yet? Hell no, I can’t even run to the end of my street. BUT what I am learning about living with limitations is that there is always a way. It might not be the road most travelled or one that’s even been dreamed up before but we’re all capable of paving our own way if the existing routes don’t quite fit.
I am working and mothering on my own terms and I’m feeling great about it. I no longer see my limitations at every turn. I see endless opportunities, ways to do things differently. My daughter might well have a mum who sometimes can’t physically do much and can’t always manage the park but I have other options in place to ensure her needs are met and I am providing her with the best role model of a mother I can be, showing her that whatever limitations she may come across in life she can challenge them.
We create and we imagine and we tell stories and learn all about the world, because I have all that to offer her. Some of what I create to aid her play and her learning form the second key part of Pockets Full of Time. I hope that there’s something for your little ones that will spark their imagination or help them learn a new skill.
So that is a very brief story of how Pockets Full of Time came to be and I will share more of my story in future blog posts. If I can help just one other person get through something similar then it’s more than worth my time to share it, because coming out from the other side of the fog has been something I will be eternally grateful for. It has literally changed my world.