I thought that today I would do a progress report on the mending process of my foot.
It’s a been a difficult time of late as we step up the physiotherapy activity and try to put more pressure on bits of my foot that are really unhappy about the demands I want to make on it.
Slowly but surely since March, the edema (swelling) has massively reduced, but we still have the daily struggle that my foot is several sizes bigger at the end of the day than is it is at the beginning, that I can’t get any of my shoes to fit even the least swollen moments and that the pain is constant.
I totally understand that working through the pain is a severe necessity, it’s literally a case here of “no pain no gain“. I totally understand that we need to be pushing the limits as far as possible because not being able to push my foot up 90 degrees to my leg will result in shortened calf muscles if I don’t, and shortened calf muscles is a disaster that would mean I’d never be able to walk straight even after my foot works again.
It’s far easier to say “push through the pain” than to actually do it, but I have been persevering and it hasn’t been fun. There have been times when I have simply pushed too far and the result has been three or four days of complete misery afterwards, sucking up strong prescribed painkillers, sleeping very badly and sitting trying not to burst into tears every 10 minutes.
I’ve seen frustration levels that I never thought I had and I’ve had “words” with my surgeon where I vented by taking a list of question I said I really would like answers for please.
I asked for some straight answers to some very blunt questions.
I expressed my frustration that when I came out of the operation at the end of November that I was told “six weeks in plaster” and that when I turned up naively with a shoe six weeks later, they smiled like I was a little kid and said ” oh no, it’s always 10 weeks in plaster for this injury” .
I had told my boss ” six weeks in plaster” now I felt like an idiot going back and saying “noooo, sorry, another month yet“.
The hospital is a busy place and I know there were plenty of people to see before me and even more to see afterwards but telling me “more x-rays before the next appointment and see you in a month” every month since February just puts me on hold for another four weeks and gives me no clue what to realistically expect next.
I am under no illusions that repairing this mess has been mega complicated, that when your foot is the size of a small melon that’s it’s not reasonable to ask even a surgeon for a rough date when it will be back to functioning normally. There is no crystal ball to see into the tissue layers, there are limits to what can be done and seen at different stages of the mending process.
I expressed my frustration of being told I could get the plaster off and walk with the pressure bandages supplied, I wore one home from the hospital that day and it hasn’t been on since.
Dystrophia needs help for these sleeping muscles to wake up and not nice lazy devices to relieve them of their work. If we want them to function again, we have to start today, now, directly before more movement is lost.
I asked the thorny question of the surgeon: Best and Worst case scenarios please, nothing in stone, no guarantees, just the best you can do today, with the information we have right now.
He explains that there are two things in this equation: First, Percentage of healing we are aiming for and hope to achieve.
The majority of people will achieve near to 100% back, (I certainly aim to be in this group). A small percentage will achieve almost all back, but it will be more difficult to achieve and a minuscule percentage will loose a percentage of function on a permanent basis.
The second factor in the equation is: Time.
That varies from individual to individual and many many factors get thrown in that will influence how long it all takes. This is where no-one can really say accurately because the healing process uncovers complications (or not) as it progresses. No-one can predict this bit in advance. I don’t expect them to give me any written guarantee, but a guesstimate would be nice please.
Based on information we have right at this moment, my Best Case Scenario turns out to be: walking more or less hopefully back at full function by Christmas, and Worst Case Scenario is much the same outcome, but only by this time next year.
I can not expect to be driving a car (ours is manual) at least before Christmas even in the best case scenario.
Suspecting that recovery was literally going too painfully slow, and with discussions with my very pro-active physiotherapist , I went armed to my last appointment with the surgeon with a detailed letter from the physiotherapist outlining in medical lingo what bits were now working and what bits are still stuck and requesting an urgent appointment with a rehabilitation specialist, which after expressing my list of hard and unhappy questions he obligingly pushed through as fast as was possible.
I saw the rehabilitation specialist last week and she is in the process of making a report for the surgeon that will outline goals I hope to achieve by set dates. In order to achieve these goals they agree that I need an especially made adjustable shoe made that will give maximum sideways support to my foot in all the necessary places, but allow me to slowly extend pressure and encourage just up/down movement to the front of my foot that is currently not possible because supporting two directions at once is just too much to achieve at the moment.
I’m assured that it will look more like a sneaker shoe than an old fashioned orthopedic boot and I’m waiting on the specifications to arrive (any day now) so that we can go immediately to the shop and get the wheels in motion. Oh not actual wheels, but you get the gist.
The last three months have been the toughest, if I thought that seven plaster casts were bad then I hadn’t reckoned on the effects of long term pain and not knowing when it was going to end. There has been the few weeks that have been more backwards than forwards and there have been more tears than I wanted to know about, along with frustrations of missing kids special school events, special family outings and a multitude of other things.
There are many days when I want to fling the crutches out the window, even with the special shoe I will need them for some time yet, but they are a hassle and it’s the small things that irritate and upset most: like people hanging up before you can get to the phone or not being able to scoop up the kid who’s just fallen out of bed in the night and needs an instant cuddle in their fright and pain.
Himself has been wonderful, he’s gaining multi-tasking skills that he never knew possible. Some days are bedlam, drop off kids, deliver me at hospital or physio, go home to work for a bit until he has to collect his mother for a Dr appointment, see a client ,pick me up, work some more, get the kids, cook dinner and then work into the night to get the work finished. He’s renovating too in between everything else.
At best this is temporary, at worst it’s long temporary and I’m just sick of it already. I SO wish I could just walk again. It’s hard to have the incentive to participate in anything much when the pain just won’t give up. It wears you down. I’m trying every day to be positive, after all many people suffer far worse every day of their lives. But I’m not perfect and some days are hard going.
I peddle on my little “cycle” and exercise with the gadgets I got from the physio. Let’s hope that the new shoe when it comes, speeds things up a tad. Progress IS progress, so “onwards and upwards” as they say… but some days real progress just can’t come fast enough.