Apart from a few minor indiscretions adhering to the Overcoming MS diet over the Christmas period, I was coming along pretty nicely and embraced the arrival of 2017 confident that surely this had to be a better year than 2016 had been. I still used the walking frame occasionally but had begun to use my crutches more and could now walk up and down the slope that led to my home without having to use either for support. I had also started to do some yoga and although I was nowhere near as supple as I was before I had the spinal surgery, I was surprised at how much I could still do. The warmer days meant that I could lie out in the sun and get the recommended Vitamin D quota and on one particularly sunny day Kate had taken me to Purau for a swim in the sea which was heavenly. The weightless feeling of being in the cool, salty water with the sun beating down on me was pure bliss. If only I could drive my car, I could come down regularly as Purau is only a short drive from my home.
I was excited at the prospect of driving the car again as this had the potential for me to regain my lost independence and also enable me to take on some more work so that I could say goodbye to WINZ with their miserable benefit and endless computer generated letters. Unfortunately there were still some hurdles to go through as I was on a six month waiting list for assessment, although there was a glimmer of hope that it might be sooner as I needed it for work. Apart from the fact that I still didn’t know whether I would be able to claim on my Income Protection insurance (despite filling out their myriad of forms and sending countless doctors reports), things were coming along fairly nicely. Then, just one week into 2017, I had an unwelcome visitor.
It appeared out of nowhere the day after I went swimming and I’m still scratching my head as to how or why it came into existence at all but the moment my left foot touched the floor on the morning of B-Day (Saturday 07 January), I knew that something wasn’t right. My heel hurt and on closer inspection it was sort of spongy as though I was maybe getting a blister. I carefully tiptoed around on it all day and come the evening there were no maybes about it. The thing was huge – like a giant water blister. Not knowing whether one should pop it and risk a tidal wave of potentially infectious fluid or leave it to its own devices, I checked with Dr Google thinking this could possibly be some fairly common MS related phenomena. No such luck so I phoned the Healthline Nurse.
“Is it bigger than a pea?” she asked after taking down the details of my complaint.
“Um, yes it’s quite a lot bigger than a pea,” I replied, wondering what sort of blathering hypochondriac would call an after hours help line for a blister the size of a pea.
“Tell her it’s bigger than a fucking kiwifruit,” interjected Kate, colourfully and accurately maintaining the fruit and vegetable analogy.
“Oh my goodness, is it really that big?” came the response accompanied by no real advice on how to deal with it other than to wait until Monday and see my doctor.
On Monday morning the kiwifruit and I went to see the doctor. It was drained and I was given antibiotics. The following day it had filled itself back up to its full magnificence and it felt weird. Any minor pressure would set off a sensation through my leg like an electric shock whilst the other leg felt weak and useless. Walking was becoming increasingly difficult as the damn thing seemed to trigger all my MS symptoms. After a week of it I was starting to feel a bit beside myself. The inflated kiwifruit felt hot enough to have reached boiling point and it hurt like hell. I lay on the couch with a bag of frozen peas on my engorged heel and then it happened. It burst of its own accord. Sort of everywhere really – but unfortunately the relief was short-lived. In the days that followed the ‘blister explosion’ it became obvious that underneath the fluid of the blister there was a dark area. It seemed what I actually had was a pressure wound.
Anyone who has ever had any experience with pressure wounds will know that they are not known for their capacity to heal quickly and easily. And for me having MS added another dimension to the problem. I wanted to try to understand why I had got this in the first place and why it was having such a profoundly detrimental effect on my MS symptoms. And that is how I ended up in the A&E department of our public hospital.
We went on a Monday morning, just three weeks after B-Day. I don’t really know what I was hoping for but at least to be seen by someone who may have more than a passing knowledge of MS and someone who might understand why walking on tiptoes with my left foot whilst coping with deteriorating MS symptoms was becoming such a huge issue for me. I was worried that this represented some sort of relapse. I was taken through fairly quickly and the bandage was removed at around 10:00am. I was seen by a young doctor and later an orthotic specialist who was going to try and organise an orthotic boot for me.
At 4:00pm after hanging around for most of the day with an open and weeping sore (which I thought was a bit odd given I was walking around in a hospital), the wound was finally dressed and the boot appeared. It was made of hard plastic, almost like a ski boot, and was about two sizes too big for me. I could see the idea behind it – there was an insole that had a piece cut out so that the pressure was relieved from the heel but that part was too small and I think I would’ve ended up with more pressure wounds just from walking around in such ill-fitting footwear.
A day later I was visited at home by the physio team who arranged another orthotic boot but this was also a hard plastic affair which was raised but had no heel. The disadvantage of it was unless you were wearing another boot of similar height on the other foot you were just as unbalanced as if you were walking on tiptoes. I am fortunate to live in an area that has an excellent team of District Nurses and we also boast a leading wound specialist in our neighbourhood, so the level of care I have received during this blister ordeal has been outstanding. In spite of this though I was still walking so unevenly lest I put pressure on the wound, and if I didn’t walk at all my foot swelled up until it felt like it would explode. The whole orthotic boot idea had been something of a disaster so I was just wearing a slipper on it until the wound specialist suggested a softer boot which looked far superior to these other diabolical contraptions.
In the short time that I have known I have MS, I have learned that it can manifest some pretty peculiar sensations and symptoms which are often unique to the individual experiencing them. And the way my body reacts now is certainly very different to what I’ve been used to for the past 50 something years. It’s difficult to explain this to someone who doesn’t have MS and even fellow MS sufferers I’ve met are experiencing their symptoms quite differently to the way I am. One of the more peculiar sensations I had during this time was that whenever the nurses made any attempt to cut away the dead skin on the pressure wound, my entire leg would feel like it had been immersed in a bucket of ice. I could have sworn that my leg would feel icy cold to the touch but it was as warm as toast when I touched it with my hand. Whilst I like the idea of having ‘sensational legs’, that is not quite what I was hoping for! It also had the effect of making me feel quite nauseous and tired.
It was exactly one month after B-Day and whilst I was waiting for this boot to arrive that I had an appointment with the doctor who had seen me when I was in the Brain Injury ward at Burwood Hospital after my diagnosis in September last year. On this particular day I was feeling especially lousy. Kate was going away for a long weekend and had put a lineful of washing out. Half an hour before I was due to leave I could see that rain was threatening and it was going to get wet unless I rescued it. After that my friend Fiona came to pick me up to take me to the appointment at Burwood so I had an hour long drive in the car, then I went to the wrong place and had to walk with my frame to another area of the hospital. By the time I got to see the doctor my foot had swollen up like a balloon and I felt like I couldn’t walk another step without my legs completely buckling underneath me.
On seeing my distress, and more concerned about the effect the wound was having on my MS rather than the wound itself, the doctor admitted me to Burwood. For me this was a welcome relief as when one is at home there is always plenty to be done and particularly with Kate going away. I really cannot praise that excellent facility enough. Seeing the nurses, physios, occupational therapists and the rest of the rehab team was like catching up with old friends again and all were amazed with my progress since my discharge last year, even though I personally felt as though I’d declined due to the wound.
As my blood sugar and protein levels were low, I decided to shelve the diet at least until the wound had healed. I was also starting to notice that I continually had a horrible taste in my mouth which felt slightly numb and so the food I was having had lost all its attraction. I was probably not being creative and adventurous enough with it and the diet had made me feel as though I was in danger of turning into an oily fish soaked in flaxseed. This coupled with the metallic, peppery taste that I’d developed had turned me right off the whole thing. So much so, that I embraced the hospital fare with great enthusiasm, although I was still determined to eat sensibly and healthily.
Once in hospital, I made good progress. The first thing that was sorted out was the boot situation. I had a lovely Irish physio who arranged two ‘orrtottic’ boots (as he called them) – a soft boot for sleeping and resting and another sheepskin one which kept the pressure off the heel for walking. If I’d have known at the onset of this that I’d end up with four new boots I’d have been quite excited at the prospect, however orrtottic boots unfortunately aren’t renowned for their stylish elegance.
I also got an appointment to see a neurologist whilst I was in hospital. This was interesting for me because, aside from having a visit from the neurology team when I was originally diagnosed in public hospital, I hadn’t yet seen a neurologist to discuss my case. He showed me the MRI images and I was surprised, and very pleased, to learn that I only have one lesion on my spine and one very small, almost unnoticeable, one on my brain. He had a student present at the time and went on to examine me for sensation, muscle strength etc. These were as they have always been – everything fine above the waist but weak on the right side with lesser sensation on the left.
“And that is a classic sign of …?” he asked the student who clearly had no more clue than I did of what that combination might possibly signal.
“… Brown-Sequard Syndrome”, he replied in response to his own question.
I didn’t ask too much about this syndrome, thinking it was probably some bog-standard condition common amongst MS suffers but made a mental note to check it out later. I won’t drone on with the details here but from what I can gather, it isn’t that common and can sometimes occur due to a spinal cord injury, or in my case, as a result of MS. The thing that I found interesting was that, amongst other things, one of the possible complications following the occurrence of the syndrome is … pressure ulcers. I returned home after spending eight days in hospital and although the dark scab covering the wound was still hanging in there and it was still very painful, I was much improved.
Thanks to the professional and caring district nursing staff who visited my home daily to inspect and dress the wound, it is now looking more like a deep graze than a pressure wound. It’s been nearly three months since B-Day when it first appeared and although the nursing staff are amazed at how rapidly it is healing, for me it seems as though I’ve had this thing forever and I suspect it’ll be a number of weeks yet before I can ditch the bandages and confidently state that it’s healed.
Thankfully I am back to being able to walk on crutches and occasionally unaided. But the best news is that I passed my driving assessment so I’m now getting back to part-time work and the independence is bringing me some semblance of normality. It’s a new ‘normality’, a new reality with mysterious new challenges and changed expectations but I at least feel like I’m part of the way on my journey back to the real world!