Let’s all go into PMR remission by using “Don’t worry, be happy”

From one of the "grannies".

I’ve had hiccups, and other bowel related issues that I certainly viewed the way you do about your version of a hiccup – but polywhatsit has not allowed me to not be “bothered”.

I think in reality that you must be a very ‘happy’ sufferer and thus I think it is now your responsibility to let us all know how to be ‘happy’ and  ‘positive’ and not even notice the polywhatsit !!

Thanks - Dave

Have a great, pain free, weekend.

Constance 🍷

I make choices. I can decide how to react to polywhatsit or anything else. I can decide how I manage my way around that which I can't change. I can change my behaviour. I can decide to be positive. Problems are there to be solved or overcome.

My career was in heavy industry. If a furnace blew up the first question is how to get it operating again. How did it happen is asked to help stop it happening again - its too hard trying to change the past, so look ahead to what can be changed. Someone else can look for blame and all that backward looking stuff if they want to.

And by way of relief I'm prone to finding humour in most situations. Usually self-deprecating humour - which doesn't always travel well across some cultures or into fora.

My pollywhatsit appeared overnight in November 2013. In Nepal. My wife and I were 2 1/2 years into driving 4wd motorhome from Aus to Europe. On our way back. Independent travel can be quite stressful. At times it seems like a never ending succession of problems to be solved. In between the highlights of people and places that is - those are the bits we choose to remember. We'd stopped for a rest and some trekking.

Important bit is that there's usually no option but to solve the problems as they arise. And a belief that they can be solved. Otherwise the goal can't be achieved. That's an important mind set.

The symptoms of screaming pain and being unable to walk all those wonderful looking Nepalese tracks were sufficiently obscure that we figured the chances of diagnosis locally were relatively low. We tossed a mental coin and decided that since I didn't seem to be getting worse after a couple of weeks we would carry on through India, Myanmar, Thailand, Malaysia and ship our vehicle back to Aus as originally planned. Arrival in Aus would be April 2014, 4 1/2 months away.

I make light of it, but imagine how difficult it must have been for my wife listening to me scream. And "can you help with my t-shirt dear" while wanting to scream some more. But with sufficient commuication, and being very objective about my mysterious condition, we could decide to proceed.

So then it became a simple question of "what do we have to change to improve our chances of reaching Aus". And "what can we do?" not "what can't we do?". One of the very definite choices about positive not negative that had already got us so far. Perversely we actually headed west through the north of India, as far as the wonderfully exotic sounding Rann of Kutch. But at a much slower pace than previously. We changed a whole heap of little things that added up to easier (but still not easy).

The day the truck almost caught fire at the side of the road was just another day. Followed by a couple of weeks of tracing melted wires - lying on the floor of the cab, contorted around the steering column, trying to follow wires with arms that just wouldn't go where I needed them to go and sweat dripping in my eyes. But again, not many available options.

Though never feeling sorry for myself. We were lucky to be where we were. Lucky to be doing and seeing the things we were. Lucky my condition was stable. Lucky that we could carry on. I was extremely lucky with the support of my wife.

So, we muddled our way from Nepal to Malaysia. I think I was lucky to only miss one day sight seeing. Though the more rest I needed the less rest my wife got.

We had internet everywhere except Myanmar. Discussions with daughter in Aus defined the sort of GP we would need the day we landed in Aus. Someone thoughtful and willing to spend time on what may be a difficult diagnosis. Holistic was mentioned several times. Good at complex diagnosis. Possibly female. Not your average GP. Another choice. And so the pollywhatsit was diagnosed the day after we landed in Aus. Immediate pred and almost immediate relief. A huge weight lifted. Our luck continued.

So getting home a couple of weeks later was really a continuation of "what's the next problem to solve?". Lucky to find this forum and people willing to share their pollywhatsit journey. I think my first post was a thankyou. I came seeking understanding of my condition, understanding which would allow all those important choices to be made. All founded on "there's a way through this, I just have to find it".

The progression of my pollywhatsit hasn't been that much different to many others. How to balance and taper the pred dose. How to deal with the pred side effects, particularly the mental ones. A very brief flirt with shingles and wondering why my legs turned blue (new shorts with not fast dye). And so on.

And now feeling lucky again that tests showed a blocked artery, which required a stent about 5 weeks ago. And a decision to attend rehab - exercise at the risk of a pollywhatsit flare. The rehab people weren't sure of any success but were willing to try. My luck held, I have more energy than I've had since pollywhatsit first struck.

The truck became broken in Mongolia. Not the time to look for elegant engineering solution. Enough temporary repair to nurse us along until back in Aus. It was June of this year, more than a year after return,  before I felt remotely capable of tackling the permanent rebuild. A big project. I'm about 2 weeks away from completion. Had to find a different way of putting the 200kg roof back on than original method. I've lost a bit of strength. With suitable pulleys and ropes my wife and I did that last week. There's always a way.

In May I decided I'd put on a bit of weight and needed to lose some. I've now lost 5kg at 200g per week. The simple engineer in me figured if I supplied less energy than I needed I'd lose weight. At one level, just another choice I made.

Nope, its not easy, it really is a roller coaster. And there are obstacles on it. Which I choose to call hiccoughs, because part of my mindset is that I don't have obstacles. Hiccoughs are easier to overcome than obstacles.

To put all this in perspective. Our trip was just something we decided to do. Our circumstances allowed it, we both knew what we were getting into. The pollywhatsit was just another problem to contend with. One of several which could have ended our trip. What I'm trying to say without any false modesty is that we don't consider ourselves particularly special in any way. The truck trip and the pollywhatsit I tolerate are just part of our lives. Other people do other things and none of us can do everything.

Which gets me to the current "Progress" topic on this forum. I genuinely get what little mental strength I have from the likes of those stories of the ladies walking further this week than last while losing their sticks and abandoning their rolly thingoes. Those are real achievements and progress. Inspiring, and at the same time I wonder if I would have such strength were my pollywhatsit to effect me to such an extent.

Its not that I'm not bothered by pollywhatsit, or that I don't notice it. Its about the choices and decisions I make in managing my life around it.

There's an old engineering joke about the glass is only half full because the glass is too big. I'm lucky. I have a large glass that's overflowing. Despite the pollywhatsit.

Just a way of thinking about the world. Sorry it took so long to explain.

Your little trip sounds like you had fun except for a couple of minor hiccups – polywhatsit being one of them. Anyway I hope you (and your wife) survived and are now living a relaxed life swimming around in your very large glass – watch out you don’t float over the rim !

I enjoyed your ‘life’ discussion – I think there maybe others who may start reviewing their ‘past’ and seeing if it was tougher than their current polywhatsit condition and if they survived prior miserable things, why they are now ‘bothered’ by polywhatsit.

But I think most of us are only really driven by what is happening at this moment and not by what went before. Generally only the good stuff seems to be highlighted in our memories and a lot of that is overruled by the daily polywhatsit feelings – but fun and enjoyment can help shove some of those feelings to one side – at least keeping our glasses half full and not half empty.

Dave

Thanks to all for comments and stories. Every bit helps.

Now back to the mundane of connecting drains on the truck. So we can be in Canberra (1300km) for Christmas, and dream of a South America trip.

Got to go. Have to create tomorrow's luck.

Never mind - Germany is a great place to be 'stuck' in - we've been here for 44 years now.

I can think of worse places than Germany to be 'stuck' in. My best place in the world to be is always where I am.

It's so easy to get lost in feeling sorry for oneself, and I do sometimes get fed up with being ill (previously PMR and now GCA), but I refuse to allow it to spoil my life. So when I'm too tired or unwell to get off the sofa, like this weekend, I sleep, read, eat a few treats. I know there will be days when I feel much better.

So thank you again for your wonderful post. :-)