Soula’s PN Weather Update

Posted by soula in About, My pain on pudendalnerve.com.au/2013/0...

Soula's PN Weather ReportIt’s been a while since I posted a personal update but it’s probably accurate to say that PN’s weather patterns need to be documented seasonally. I mostly have turbulence, like it’s sunny one day/stormy the next, or otherwise described as I take two steps forward and about 1.9 steps back. It’s incredibly frustrating. So rather than report all the fluctuating details in between, it’s best to leave some months go by to really figure out the progress. So now, the months have gone by and I can deliver to you, Soula’s PN weather update for September 21, 2013.

-5° –23°. Sunny morning, windy, followed by a few showers. Expect a sunny afternoon and rollercoaster barometric pressure.

I will begin by reiterating the word I used above, progress, as in the overall scheme of things I am up more, in less pain, I have less spasms, less flare ups, I am able to do some light duty work and I am mostly rid of the horrific fatigue. This progress still heavily relies on my number one treatment, Theo, who helps me 24/7. I use my seating aid almost all the time, I also have fortnightly treatment with my Italian Chinese Medical (ICM) Practitioner, Raffaele Vavala, a monthly remedial massage with the brilliant Pam Frost, very little use of my stimulation device, foot massages on demand (there’s Theo again), naps as needed, and a cooling (backward) bidet when the dreaded flare is approaching. My consumable treatments are the herbs from my ICM, his cooling patches that I apply daily, the 5-10mg of Endep* daily, the occasional Nurofen and when I’m really in the thick of it, all of the above topped with Sparkling wine (yes I’m condoning alcohol but just for ME!).

26°. Fine and sunny.

So those of you who have been following my story will notice one major treatment has been eliminated… the nerve block! Taking in the fact I’ve not needed a fourth nerve block now and that I hardly use my stimulation device, I have much lower pain levels and I am more active, I believe that it certainly is progress.

15°. Thunder, rain, wind. More thunder, rain and wind.

My limitations are many, I still don’t drive and still avoid being in the car for drives more than a few minutes long, I’m still unable to ‘up and go’ – by that I mean going out to pick something up from a store, heading out for the day with my sister/nieces/a friend, I can’t even begin to plan these things because I’m trying to keep my capacity for a little work and creativity, and my very special local outings with Theo. When anyone needs help, I can’t provide it physically, I don’t even deliver the week’s newspapers to our neighbour, I don’t step out to buy the milk, take a package to the post office, visit my local art shop to pick up some goodies, carry a handbag, put on heels, even wear my heavier boots daily… and you’re probably guessing I hardly do any chores either. To top the limitations off, there are renovations going on next door and the regular rattling of the compressor feels like someone’s drilling into my spine via my feet and our shared concrete slab . I’m so grateful to the brilliant building crew who have now put their compressor on a rubber mat, yes what precious treatment does my backside get?! Thankfully Theo explains these details to the builders and I don’t have to stand there talking about my backside and how the nerves within are rattled all the way to my brain! Honestly, the fatigue hits in seconds and that’s just from noise! It does get a little stormy…

Come rain, hail or shine

PN is so erratic. It’s about sacrifice, trading this for that, and worst of all… slowing down if you want to speed up. PN is very much like the weather, there’s no way of predicting the daily forecast so whatever the weather, you just have to cope. I’ve gained a huge understanding of my injury since my diagnosis and that becomes more clarified with every visit to Raffaele Vavala. Just yesterday when I stated these words to him, I mostly feel I take two steps forward and about 1.9 steps back, he replied with, “Soula you must remember your initial injury is a shock to the nervous system so that’s where you will feel things most.”. That’s not exactly a completely sunshiny outlook but my problem is identified and so I can keep on working at it… ride out the storms, and enjoy the sunshiny days.

*My Endep consumption began with 1/4 (of a 10mg dosage) every third day and over many weeks I worked up adding 1/4 of the tablet slowly. I now take a 5mg tablet cut in half (morning and night Day 1) and 3/4 of the tablet cut (to be taken 1/4 in the morning and 1/2 at night) amounting to 7.5mg on Day 2. After a horrid previous experience with a Tramedo/Lyrica cocktail, I approached my next recommendation from Dr Courtney and Anne-Florence Plante with much more caution. Surprise, surprise I have pain relief and nowhere near the horrific side effects that left me unable and unrecognisable to myself.

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What seating aid do you find most useful? Is it home made? So far I completely avoid sitting apart from the loo. I even have my favourite one of them in our house!

Glad to hear that your new medication is giving you more help.

Keep strong.

[helpmeboof]

I was just about to ask the same question - what kind of seating aid please? I even eat standing up 'near' the family dining table. When watching tv it is impossible to sit on soft sofa (post natal pelvic girdle pain manifesting itself in pelvic and back pain) but I do find it comfortable to sit on an exercise ball and can even do gentle back exercises while watching tv. No solution found for regular chairs or loos! Fyi found low dose pregabalin/nortriptyline plus weekly then fortnightly physio and regular pilates reducing pain by approx 50% as predicted by pain management consultant. Best wishes to all.

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Hello KatieMaria and HelpMeBoof,

This is my history of seating: pudendalnerve.com.au/2012/1...

I now use the simplest one of all that I made. It's the one in the black zip envelope with two bits of semi hard foam coming out of it. The post should explain it. I understand you both I couldn't sit, only lie on my front. And sleep and sleep and sleep. It was a horrific time. The loo is my favorite seat too. Have you guys tried cold running water? HelpMeBoof, this whole nightmare began with an exercise ball. I used to do 4 mornings a week of yoga (ankles passed my head, all that stuff) and I thought I sat too long working as a graphic designer so I changed my seat to a fitball (exercise ball). Well, it burst and I fell to concrete flooring. That was 6.5 years ago...

Best wishes to you both too. x