Driving anywhere over 30 minutes away costs me dearly – pain, near-fainting etc. I can’t even visit my friends any more. So why am I mental enough to attempt it twice a year? Especially as my boyfriend and I keep trying to explore further and further afield?
I’m not living in the same area that I grew up in. So some friends are scattered across the places I’ve lived, and others are where they returned to after university. But they’re all way too far away for me to be able to visit, nowadays.
I do have a couple of exceptions, mind you: my one and only Local Friend for Local People (his official title, and an obscure reference to The League of Gentlemen), and a couple of lovely peeps, who I’ve now known for many a year. I may only see them once in a while, but the glee of seeing real live 3D friends never gets old!
Otherwise, though, my friends generally visit me via the computer! Good ole internet saves the day again.
My one real-world constant is my boyfriend, who somehow still hangs in there despite the fact that every moment of every day revolves around my conditions. My health dictates what we can do together, and everything has to be worked out and planned waaay in advance to keep the pain levels down.
There are times when he struggles to cope with the realities of my condition, and they tend to coincide with when I am not coping. When I’m trying to get my head around a new health issue and trying to figure out how we can work around the new selection of symptoms and resulting limitations.
But he’s still here, he’s still so supportive, and that’s really saying something considering how much he listens to me jabber on about stuff until I get my own head around it!
CRPS is sometimes referred to as the ‘suicide disease’, and with good reason. We do our physio’s to try to kick our ANS into better ways of behaving, but ultimately it is our minds that go into battle. And ways in which we keep on going, despite the relentlessly unbearable pain levels, as well as the various additional dys’ problems, are not drawn from an infinite well of coping mechanisms. There is a point beyond which you cannot go. You cannot fight any longer. You feel like giving up because you just can’t do this any more.
Well, what do the generalised ‘they’ recommend?
They say…..“A change is as good as a rest.”
Okay, so we get no rest from our conditions. But we can have a change. And even if that change results in worse symptoms and is worse for our bodies, paradoxically, it can still strengthen the mind and help us to find new resources to draw upon. We find ways to keep going for a while longer.
I cannot tell you how desperately I need this pain-inducing, hellish, holiday event every once in a while!
Spending time together away from all of the day-to-day mundane is a must for any couple. But for a couple who have their lives run by an all-pervasive condition it is crucial. We love each other to bits, but we still need time to catch our breath to be able to brace ourselves for the next few months.
So, twice a year we try to have a handful of days for ourselves. It’s the only time we ever get away from it all, and even then we take all the health problems with us! But, on the plus side…..no hospital appointments…. and somewhere different for us to spend my physio’ activity time. Yay!
I am so good at hiding pain levels that I’m not altogether sure if others truly realise what a journey does to me. Even as a passenger in a car the pain escalates beyond description, there are no painkillers that sort it out, and it doesn’t go away quickly. The aftermath is usually way worse than the pain at the time. So even as a passenger I can easily be crying with the pain for a week afterwards. Despite doing a convincing impression of being fairly okay whilst in the car. And, trust me, it takes a very high amount of pain to make me cry these days!
(You can create your own superhero at http://marvel.com/games/play/31/create_your_own_superhero) :-)
If I do more than my body can handle, there are always repercussions. I can expect pain escalations from spending a few extra minutes to finish washing the dishes, or when I don’t rest my legs properly when a friend comes to visit, or a hospital appointment that throws out my usual activity for the day. (There have been many hospital appointments during the last few months, so I’ve been permanently out of whack for yonks)!
So we pick somewhere for my bf to drive me to, and we plan it to the nth degree. We plan places to stop for physio’ walks, and I go armed with pillows, blanket, hot water bottle, footstool, crutches, painkillers…etc.
If we want to go anywhere and see anything, then we have to do so during my restricted activity time allocated for the day. But because of the uncomfortable passenger time I still end up utterly wiped out. I basically do nothing more than usual, but because I can’t get into the best position to recover, my pain escalates and I struggle more and more each day. My bf, therefore, has to do eeeevrything for me….he cooks, does the dishes, makes me hot water bottles, brings me cups of tea and painkillers, cuts all his holiday-wanderings short to fit in with my physio’s, sits with me for the whole of my recovery time…blah, blah, blah.
In short, I think he is blummin’ amazing and I worry that it must be a crappy ‘holiday’ from his point of view. But he’s determined that it’s still good for him to get away, and even though he’d like to walk for hours and see more, he’s still glad to see what we manage to see during my activity quota, depending on what my pain levels allow.
I paused here in my typing to marvel at just how amazing he is. I’m not really sure how he does it. But then he’s not sure how I cope with being the number 1 affected party, so I guess there’s some mutual amazement and admiration going on here!
We try to get the best part of a couple of weeks in the summer, because my pain levels are easier to work around in the warmer weather, and also a few days away at the end of winter, simply because we cannot find the inner strength to keep going otherwise. I cannot highlight enough just how crucial these tiny and rare events are to keeping us going without falling apart.
We’ve not long returned from our attempt at this year’s end-of-winter event. We thought we could work around the additional pain levels, but it turned out that we were mistaken. My legs just packed up completely! I have to do physio’ walks to keep the pain levels from escalating even further, but I struggled even to put one foot in front of the other. I got virtually no sleep because I was always in pain and I must have been terrible company as I was always just trying to get through each moment.
We knew that getting away has a detrimental effect. But we’ve just found out that for our end-of-winter escape, we have to stay really close to home, because two nights after we got back the pain went up even further and right off the scale. It’s difficult to describe the sensations, and I will not attempt to anyway as it’s not cheery! Panting through the pain for hours on end through the night and trying not to yell, whilst my bf looks on in distress, gives you a bit of an idea. Suffice to say I began to question again how I can live with this condition.
But I can. I do. I am afraid of what the future holds, though. It’s been gnawing away at me ever since the dys’ presented me with a whole new selection of problems. But I’ve always found a way before and I’m a stubborn old so-and-so, so I assume I’ll find ways in the future, too.
The really important thing is that Gnomes Bane and Magic Dude go somewhere different to just spend time with each other. If it can’t be far away then so be it.
But despite my twice yearly, bf-enabled, change of scene I am still unable to see the friends I desperately would love to be able to visit.
I am desperate to be able to build up my legs to cope with a longer drive so that I can actually visit my more geographically distant friends, but the difference between my current 20-30 minutes and the 1.5 – 2 hours target is just too big for me to hope to manage anytime soon.
If I get chauffeured, I won’t get to hang with my friends for long, but at least I’d see them. But my bf/chauffer would then have to take several days holiday off work to look after me whilst I work through the horrific painful aftermath. And it takes me months of good pain levels to get stupid enough to even consider voluntarily creating those sort of pain levels. But, these days, I just don’t seem to get the good pain levels for long, anyway.
The whole situation makes me go ‘rarrgh’ and I get really peed off. But, ‘tough cheddar’ or ‘hard cheese’, as they say. I have CRPS. I have worsening dysautonomia. There is nothing I can do about it. But it’s going to take a lot longer for me to face a reality where I can never drive the distance required to visit my friends. So in the meantime I am still striving towards improving my driving time. I know it’ll probably be a fruitless effort. But I often think in paradoxical ways these days! It’s now a habit for me to work on the ‘prepare for the worst, hope for the best’ principle.
It’s important to keep fighting for something, and to keep working towards something.
I like to have some achievable goals, because otherwise it’s really demoralising never achieving anything. But I also have some dafter goals that I also try to work towards. They tend to really stress me out and I’d probably be psychologically better-off if I just gave up on them, but I’m too darn stubborn! And I’m not yet ready to give in to being trapped in what might as well be a completely different dimension to the one that most of my friends live in.
So meanwhile I live in (possibly misplaced) hope, and I am so grateful for the internet that connects me to the world. The Zombie Apocalypse had better not happen, yet: because I neeeeed my electronic network, (where my friends live), to remain functioning, thank-you very much!