(Image: Now this is what I would call an anti-burst fitball!)
I’ve just come back from Italy. I lived a dream, that’s exactly how it felt. I lived it with my husband Theo. Without him, clearly I would not have been going much further than the Italian restaurant up the road, but aside from the obvious, seems like Italy was a great destination choice.
Obviously there had to be some turning point in my Pudendal Neuralgia (PN) life if I was ever able to think about travelling again and the turning point for me was my stimulation implant.
Just as my senses returned, my dreams did too and my dreams always include travel. That’s what we did every year before my accident, it was part of our normal and fortunate life.
So with my returned senses came dreams, with senses and dreams came diagnosis, with diagnosis came, finally, appropriate treatment, and with the right treatment came great pain relief and some much deserved and needed increased capacity. I feel I’ve arrived on a very high mountain but had to crawl all the way up over 5 1/2 years.
So, here we are on the mountain, I mean, in Italy, and boy did we pick the right place! Not only did we have a divine holiday but we stumbled on what feels like a miracle treatment for my form of PN and that was part of the Italian lifestyle: bidets and siestas.
I set off very prepared having had nerve blocks and begun Endep before I left Melbourne. I was taking a quarter of a 10mg tablet every second day and increased the dose gradually to 3/4 per day by the end of our five-week trip (and by then I was well and truly quite happy to sleep all day even though it was Italy outside. I had to knock 1/4 off my dose).
Five weeks, yes five weeks, with PN I don’t go anywhere, do or see anything quickly. If I’m making comparisons with the old Soula, I need much more time as each 24hr day now is equivalent to 1/3… if I’m lucky! I also have my human walking stick, Theo, and another light, adjustable and foldable one. I had a few hundred gels and insoles with me and left any kind of shoe with a heel on it at home (along with any handbags which I ditched a while back anyway). I also took my ice pack and made sure I didn’t need to carry anything. Yes, you guessed it Theo carried everything, he resembles a mother with a baby bag! Our destination and time of travel choice, Italy in spring, was based on being able to wear light clothes (winter garments add weight which means pain) and accommodation was booked in city centres to avoid any daily commuting.
Doing the same activity really aggravates my condition so I can’t plan to just walk or to just sit, I need variation. So the days went like this: Up, walk to breakfast, down to eat breakfast, up to walk around the town, down for lunch, up to walk (and just make it) back to the hotel, down for sleep and rest for a few hours until early evening which was up and walk to a drink, down to have the drink (and the chips, olives and nuts that come with them!), then up to walk to dinner, then sit down for a short dinner, walk back to the hotel and all slow, short-medium distances, slow pace, walking with my human walking stick and not holding anything in my hand (a key tip in my case as the minute I hold something, look through store racks or books, my pain timer turns on). Of course, doing this every day isn’t going to work as the distraction ‘of new routine’ wears off. You also come along bumps in the road, have to dodge people traffic, I might drop something, etc., any small thing starts that timer.
At this point, if you haven’t already guessed, Theo holds the fort by doing almost everything else, our aim constantly on maximising my up time. He does the shopping, washing, tidying, ironing, opening all doors, carrying anything we need, runs ahead to see if the street leads anywhere worth walking to, as well as all the larger tasks while I rested like lining up at the post office, checking out further parts of town to see if they’re worth the painful train/taxi ride, checking out seats in restaurants, going back to our hotel for things we forgot, etc. etc.
Obviously, some days going out was out of the question but this is mainly how I coped. I believe without Theo’s help and his arm I would have had half the up time and the pain would have elevated quickly which would ultimately result in flare ups and more days in. Holding on to Theo is taking pressure/weight off that nerve. I’m not sure if the severity of weight is understood for this condition but it makes a great difference.
After just the first few days I wanted to reach for the ice pack. We had done much more than I usually attempt just to get to the first destination so I wasn’t surprised. Instead of reaching for my pack though I sat on the bidet… backwards and ran the cold water all along the PN’s area. At first I thought ‘oh here we go another discovery shocking to the body that probably won’t last’ but as the days went on and the activity persisted and my Endep kicked in I was amazed at the difference I was feeling. My implant was off but I had a hunch that it interfered with my last nerve block anyway and expected I might not need it on for the first four or so weeks. The best thing though, was that I felt I had peeled more layers of that pain onion I keep hearing about. With more pain masked out I could identify more clearly where my pain was coming from. It was amazing… so I kept sitting on the bidet any chance I got. When my few flares begun I would run to the bidet and it would stop the flare, then I’d rest and repeat this until I felt the flare was subsiding or rather that I, YES I, had controlled the pain, maintained low-level pain, prevented a flare up (first ever time!)… I was able to manage the monster and stop it from rearing its ugly head. I couldn’t believe what I was feeling and what I had discovered.
Our new bidet will be installed in the next few months… but for now I’m filling a huge bowl with cold water and sitting in it. No fun in winter I can tell you but if it means I can control this monster for a long enough time I have a chance to shrink it to a mini, more manageable monster with the hope I’ll be able to get more active. It’s great to have lower pain levels but the fact remains that my issue is a very sensitive one and all activities and movements have to be counted. Until that sensitivity ceases the PN monster will rule my life… and Theo’s and that’s simply unacceptable.
A few other tips and notes
Amici degli Uffizi: I paid for membership at the Uffizi which enabled free entry to most museums and sites in Florence but more importantly I didn’t have to queue and could visit unlimited times. This helped me stick to my 40min limit time. My implant ID helped with permission to use lifts everywhere. I’d like to thank the gorgeous and very sweet Lumi for being so helpful and so welcoming when I went to pick up my card (it was such a pleasure to meet you),
Accessible Italy: I called this fabulous group to help with the visit to Vatican City but they are available for help with any plans you have for Italy, yes they’ll even plan your wedding!. They are a great group driving lots of changes for people with disabilities (and by that I mean they’ve had lifts installed almost everywhere so always ask for it).
Boboli Gardens: It’s worth the walk to the top, honestly the view is an injection of happiness but walk along the right side on the lawn, not the steps. There are a set of about 20 steps before the very top. I didn’t ask about disability access here as we gave ourselves hours to slowly get up and down. Pack a lunch and water (get someone else to carry it!).
Keep cool, don’t look for sunny spots or warm seats.
Of course I could extend the post to a thesis size and note all things I couldn’t do and point out details like Theo having to visit many sites on his own and that I finally got to Florence and couldn’t even participate in a 3day art course but as usual, I prefer to talk about the positives*.
Staring at the next mountain…
Obviously it took me a while to write and publish this post. We returned from Italy mid June and my treatments of sitting in a bowl of cold water, medication and nerve blocks held out… til today. I’m hoping this will be a couple of bad days as a result of the slight increase in activity. I turned my implant on this morning to ease the weak and wobbling legs and itching nervy sensation in the sacrum. I’m also 12 weeks post nerve blocks so they could be wearing off too.