Here’s a confession for you – I wear odd shoes! Yep you read right – odd shoes! Well technically not odd in the common sense meaning of the word simply because one of my shoes is worn for medical reasons – an Aircast boot, which I wear on my CRPS foot. On my other you will usually find me with a snow boot come rain, snow, hail and shine, at minus 5 to plus 25 you will generally find me with at least one snow boot on! To compensate for two different types of footwear at the same time I will often be found in odd socks too! I do say that when I grow much older I will be that little old eccentric woman who wanders around in odd bits of clothing with a tea cosy on my head! Well, really, what do I expect – what started when I was young with wearing socks over my shoes on my walk to school in the winter (stops you slipping on ice), turns into odd shoes in middle age, and after that there is only one place to go – tea cosy hats and Nora Batty tights!
After many years of wearing odd shoes I am finally able to get into a pair of matching shoes.
Wow a pair!
I will say it again to make sure I am reading it right, say it nice and slow
– you don’t know how good that sounds! More so you don’t know how good it feels! I am still rather limited with the type of shoe I can wear, and still suffer during wearing, and afterwards, but I now have a plan that is workable, still reduces the swelling and is less painful than previous attempts at wearing a pair of shoes.
Yes I have worn pairs of shoes in the six years since getting CRPS, in fact several times and several different types, including a pair of kitten heels way back at the beginning of my CRPS journey – I was refusing to give in to only being able to wear flats! However my shoes have always had payback of the most painful and swelling kind, plus recovery time after wearing them, so usually it easier and less painful to go with the decision of Aircast boot and snow boot. However these do not lend themselves to pretty skirts and dresses, so my wardrobe has become somewhat limited to trousers unless I throw caution to the wind and go for a pretty dress and a pair of flats knowing I will suffer for it after.
Apart from wearing shoes to go with skirts and dresses I have also had to bear the pain to wear trainers for sailing – the Aircast boot really is not suitable for a sailing environment. The trainers are great for protecting my feet from gravel and the wet, however they are no good for keeping my ankle warm, giving it support, or keeping the swelling down. I often come off the water with my foot like an ice block, so very cold it is like holding a cube of ice in your hand and not being able to let it go. If you don’t have a nerve problem try holding an ice-cube for as long as possible, or dip your foot in a bucket of ice for as long as you can take it. When you let go of the ice-cube, or take your foot out of the ice, the pain for you will stop in a few minutes, however that very same pain will be relentless for a sufferer of CRPS continuing for many hours, if not days. For me after sailing I end up with this ice-cold freezing pain all the way from the tip of my toe right up to my hip. If I am lucky it will only go as high as my knee. If I am fantastically lucky (very rare) it will only be my foot and ankle – for this to happen though it has to be about 26°C out on the water (very rare in Belfast Lough).
You may be sitting there wondering why I put myself through this pain to go sailing?
I won’t get into all the reasons here as I don’t want this particular blog post to focus on the losses that chronic pain causes, apart from saying that a chronic pain condition such as CRPS strips your life from you – it strips your friends, it strips your hobbies, it strips your employment, it strips your independence, it strips your health, it can even strip your family. I am lucky it has not stripped me of my family, however I know others who are very isolated from their families now because of CRPS or other chronic pain conditions. I found that sailing gave me back some of my life – it gave me back some of my independence (I can sail a dinghy single-handed alongside able-bodied people and stand just as good of a chance of winning a race), it gave me a hobby that I thought I had lost, it gave me new friends, it bonded my family through some very difficult years, it gets me out in the fresh air, and, to some degree, through volunteering for a local Sailability group, it helped me to become gainfully employed again. Sailing has given, and continues to give me so much of what I have lost, it also gives me something I can talk about other than my pain. Yes, it doesn’t bring back my life before chronic pain – nothing ever will except for a miraculous cure (I keep my fingers crossed) – it has though allowed me to create a new life around the pain.
There are days I want to go out and sail but feel I can’t go because of the pain, or I can’t face the recovery time afterwards. Over the last couple of years with managing pain and being in employment I have had to take the easy way out and say no to some sailing opportunities just so I can be fit enough for work. There are still opportunities when I would have a couple of days recovery time after a sail and I can still so easily take the easy way out, however with a bit of encouragement from my hubby I submit and go. Nine times out of ten I am glad I did push myself to go because once I am out there on the water I can forget for a while. There’s no room in the brain for pain signals when you are controlling a sailing boat – there is just so much to be concentrating on – where is the wind, is there a gust coming, adjusting the sails, steering, avoiding other boats, getting to the finish line, working as a team, making sure I stay safe and others around me are safe, and many more besides. I would use distraction as one of my tools to managing my pain, and sailing a boat is one of the best forms of distraction going. So there you have it, the reason behind why I sail and end up suffering the extra pain. It gives me a life, it gives me my life!
So back on track to the shoes issue!
Not long after I booked my trip of a lifetime (in case you don’t know I am crewing a tall ship in the Tall Ships Races 2015), I was sat thinking as to what on earth am I going to put on my feet to sail a tall ship? My current option seemed to be not quite right for something I am going to be doing for 14 days through any kind of weather the elements can throw at us. So I decided to weigh up the pros and the cons of all the options available:
|Aircast Boot||Provides excellent support
Keeps ankle stable
Keeps swelling down – foot held under pressure (vibration, e.g. travelling in a car, causes extra pain and swelling)
Provides an element of protection from idiots gravitating to my bad leg (why do people always manage to trip or bump my bad limb – never the good side)
Less swelling equals less pain
|Big and cumbersome
Can only wear for short periods of time (I am often found wandering the office at work with one boot on and one boot off!)
|Trainers||They are what I have always worn sailing so I am used to them
My special insoles fit them to provide support for arch of foot
Easy to put on
|No support for ankle
Ankle swells like a muffin over the top of the trainer
Ankle gets cold very quickly
Pain rises when cold
Not waterproof in heavy weather – water goes in through the top
|Sailing Boots (haven’t been able to wear any up to now!)||Come part way up leg so protects ankles as well as the feet from the elements
Designed for sailing
Good soles that grip wet decks (not that I walk on board a boat)
|Can’t put on tighter fitting boots due to limited range of movement in ankle
Wider boots offer no support
Potential for flopping up and down on my feet (anyone with CRPS will tell you, it is hard enough to keep shoes on a CRPS foot let alone ones that move causing friction against a limb that suffers Allodynia – where touch or a breath of air can cause pain!)
So I pondered some more, and a bit more on top and decided to have a chat with my pain consultant about 5 months ago – what I needed was some sort of support that would give me the benefits of the Aircast boot without the negatives, and would mean I could hopefully get into a pair of sailing boots. He referred me back to my brilliant physio who, after a chat, provided me with two elasticated straps to try out. One was a failure from the start – it wasn’t supportive enough and felt very uncomfortable. The other has worked to some degree. Now it is not perfect. I can only keep it on for short periods of time before the pain starts getting too much. Don’t forget I am in pain all the time, and the resolution of the problem was to find something that reduces the swelling and did not increase the pain so quickly I would have to take it off within 5 minutes. At first I could only wear it for half an hour, and slowly I have increased this to four hours – which is good going. On a really good day I have managed a whole day!
Due to it being elasticated (quite tight-fitting) and having 3 support straps, that I have to do up in a criss-cross configuration, I have found something that will keep the swelling down in my CRPS foot and provide great support for my ankle. I look at it as the soft alternative to the Aircast boot.
After having some success with this strap when wearing my snow boots (yes I was wearing a pair of same shoes – still odd socks though!) I decided the time was right to do some research into sailing boots that would fit my needs. I still needed something that would be wide enough to get my none bending ankle around the bend into a boot, something that would be warm, with a good cushioned sole, and something that could possibly be tightened up once the boot was on to prevent the boot flopping up and down. The cushioned sole is very important as I can’t take feeling stones through the sole due to the pain it would cause. Also because the CRPS foot is so sensitive on the sole I would get pain from the pressure of bearing any weight or from the simple action of just resting the sole of my foot on the floor without proper cushioning. In the middle of May I found a pair of sailing boots that I thought would fit all my requirements. So with entering a few details online and a brave click of the mouse I ordered them.
With my fingers crossed, I waited for my parcel to arrive, which it did two days later.
With excitement and trepidation I opened the parcel and with a deep breath, my elasticated strap on my foot, and some positive mental attitude that all would be well, I tried the boots on for the first time. Onto my good foot first so I could gauge how well it would go with my bad. They were comfy on the good foot so I decided to go for the try on the bad foot. Now they are not as loose as I thought they would be so it took some doing to get my foot round the bend but I was determined. In slipped my foot, or should I say in struggled my foot with a strong pull on the side of the boots. Then it started – the intense juddering I get in my foot when I have moved it wrong, or tensed it, or simply just put a shoe on. That juddering vibrates all through me and drains me of any spoons quicker than you could lift a teaspoon from a kitchen drawer. Eventually the juddering subsided and I was able to tighten the strap on the boot across the foot to prevent the boot from flopping up and down when walking. Tentatively I stood and with my crutches took my first steps – I was pleased, I was over the moon, I finally had a pair of sailing boots I could wear.
After umming and ahing for a couple of weeks I decided to order the next size up to see if it would make it easier to get my foot around the bend in the boot. As I would be wearing them day after day for a fortnight, I really thought I needed something a little less painful to get on and off. The new sized boots arrived and they were an even better fit than the first pair, and easier to get into, still painful, but not quite as painful. I can’t wait to wear them on board Lord Nelson knowing that my foot will not swell so much with wearing the elasticated strap, plus my ankle and foot should stay nice and warm in the boots thereby reducing some of the pain that comes from having CRPS.
Something that should have been so simple to do, and would have been pre CRPS – such as go out and by a pair of sailing boots – ended up being a carefully thought out process of preparation and research, along with months of acclimatising my CRPS foot with a new strap/splint and new boots, which is no easy task when suffering with CRPS and Allodynia. I probably would not have bothered had I not have been going tall ship sailing – for the couple of hours I would be out on the water usually, I would have remained using my trainers. However, what this has shown me is that with the right incentive and a good positive mental attitude to overcoming problems I can move on and push through the boundaries that CRPS keeps tightly knotted around my ankle. It is not easy, and I know I will have set backs. The pain is still there and probably will never go, however I know that I can work around this pain to achieve, and be the best I can be.
Whether it has been simply to get out of bed in a morning when my body is screaming “NO” due to the pain, or the determination to be able to walk with one crutch carrying the olympic flame (it was painful, and only for a very short distance, but I did it before resorting to the wheelchair), or succeeding in getting into and wearing a pair of sailing boots – everything I have achieved thus far on my CRPS journey has made me who I am today.
I will still take my Aircast boot and snow boot with me on my tall ship adventure, alongside the sailing boots, so I have options available to me. At this moment in time though I am just thoroughly pleased that all my hard work over the last 5 or 6 months has paid off and I will be able to go sailing in my sailing boots. Plus when I return from my tall ship adventure I will have a pair of sailing boots to go sailing in when our little Isabella gets back in the water.