The chronic illness Christmas card paradox

I received a hand-made Christmas card from a friend I haven’t seen for ages. It gave me such a lift.

Handmade card from Glenys

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Now I find myself hopefully checking the doormat every day during the run up to Christmas.

Being chronically ill means we’re often lonely. We’re feeling separate from the world that we used to move around in. Every day I check the doormat because a card sitting there would be such a wonderful lift and would help me cope with the long symptomatic Groundhog Day stretching ahead of me. The thing is, it’s hard to write cards when you’re chronically ill. Using what little functionality you have to do so means you can’t do other things. Which is the same for everyone of course but when it comes to illness it’s not about losing time it’s about losing functionality to do something really key, like being able to eat dinner. And whereas missing out on basics like eating isn’t the best for healthy folk, it’s much more severely impacting on an already malfunctioning body.

From a healthy person’s perspective, it’s not that they’ve consciously decided not to send us a card any more for Christmas, birthday or whatever the occasion may be. Well, okay, for some people it might be. It’s not an unusual human response to think that they’re not going to send cards to people who don’t send cards to them, but mainly it’s very usual to not understand what it’s like to be chronically ill.

Being absent from friend’s lives makes us fade into the background because they have other friends they see regularly. Whereas for us, well, we don’t generally get to see our friends. Travel is erm, difficult (one heck of an understatement, I know) so we see whoever we actually live with… and medical practitioners. (Sooo many medical practitioners). Oh and walls. And ceilings (those of us with Dysautonomia tend to know some of our ceilings in quite a bit of detail)! We don’t tend to get to see anyone else. So the friends we haven’t seen for years can be just as important to us now as they were back when we were able to see them in 3D. They do not fade into the background because our foreground is mostly illness, they stand out in the bright and colourful areas that we like the most.

Potentially a healthy friend and a chronically ill friend can perhaps feel very differently about each other. And it’s hard to feel ourselves being faded from their main friend space when they are often still our main friends.

We can’t help hoping for indications through the post that maybe they haven’t forgotten us either, that even though we are ever-absent from their lives that they still somehow care meaningfully about us.

There is a paradox when we make that massive effort though… “I’m determined to write cards this year…” knowing full well that we’re going to make ourselves more ill by doing so: the cards that plop onto the doormat are more often a response to the card we sent rather than something that would have been posted otherwise. So then all that effort brings us a bitter-sweet moment. A card that is meaningful to us and yet never would have arrived if we hadn’t managed to send one ourselves. We learn that when we can’t write cards there are very few people who will still remember us regardless, but we push ourselves every year because we want to send people some love. We don’t write cards to receive them, that is most certainly not the point. We try to write them because our friends mean so much to us. It’s human to feel somewhat bereft when it appears that regard between friends has become imbalanced and yes it’s not actually about cards at all, despite how we tie ourselves in knots trying to work out if we can physically afford the impact from writing them. It’s about connecting with friendships at meaningful times. About feeling loved and included. That we’re still of some importance or significance to them. And it’s about feeling a little less alone at a time of year when loneliness can be most difficult.

In the end we have to be kind to ourselves. If it’s going to reduce our functionality to the point of being even more impaired in meeting our most basic needs then we shouldn’t be pushing ourselves to do it. The reality of not receiving any festive cards is an extra sadness in the overall cruddiness that is being really ill all the time, but we really need to manage our health. Fortunately our pals who also happen to be fellow patients totally get it, we support each other and reiterate our friendships online. Thank goodness for the internet! Though we still try, and each year some of us will succeed in writing a few cards and asking someone else to get us stamps and post them for us.

Interestingly, I find that my doormat is more likely to be graced by completely random arrivals that have nothing to do with yearly events. These are perhaps the most beautiful and lifting kind. When someone has thought of you just because they have, not because you’re on a list. The arrivals tend to be from a few astoundingly thoughtful friends who I either rarely see or have never even met in 3D. These are the heartwarmers. The ones who make us smile just by thinking of them. They are most commonly fellow patients who understand in depth what living with chronic illness is like but who send something because of the love in friendship, not because of the illness we might share (even when what they send may in fact be totally related to our illness, and is super thoughtful and aware because of that too). These arrivals are overwhelming because we know how much it has cost them to do this, and they chose to do it anyway. Love is priceless.

metal straws

Like these metal drinking straws sent to my by ‘The Princess in the Tower’ so that I can still get some enjoyment from a cup of tea when I cannot raise my trying-to-faint head.

The other arrivals are from that rare breed of healthy friend who sees the health stuff, does their best to understand it but still sees us in here as well. We’re not just a walking illness to them, we’re a friend they love. And because they love their friends, seeing us so ill pains them terribly. But seeing us in here too, gives them hope and helps them cope with the illness stuff. They have to keep their distance to cope, but they don’t stop caring. I don’t think they know just how rare they are, many patients can count these friends on less than one hand.

Contact from those who still genuinely know us and who handle the illness that comes with us as best they can (effortlessly, in the case of fellow patients) means more than a token reciprocal card. People are insanely busy at Christmas. We get forgotten because they are buried in Stuff and they don’t actually see us in 3D. But those blanket text messages and occasional private social media messages that we receive instead mean the world to us. After all, we do the same. It’s better for our health to do it that way and we know that our sentiments are no less for having sent them out en masse, so we know that receiving friends’ messages like that are just as genuine. We may not be able to hang them up and look at them from wherever we are stuck dealing with symptoms that day, but they warm our hearts nonetheless and that’s way more important than warming our doormats.

The yearly paradox persists though simply because it’s nice to be able to send cards to the people we care about. To show we are thinking of them and give them something they can put up in their home instead of read once on their phone. We’d like to be able to be a bit more present in their lives that way. And we’d like to experience being on the receiving end of that, too. Let’s try to be kind to ourselves and allow us to send the messages to those we love in lieu of writing symptom-amplifying cards, or sending a selection of carefully chosen emojis or a voice message in the case of those patients who experience enormous impact from using their hands. Says the hypocrite sat here surrounded by cards that I hope to write.

Yep.

Every year. <headdesk>

Happy festivities to you all whichever they may be. Be kind to yourself, there are people out here wishing you well and who are dancing the paradox with you.

xx

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Photo Challenge for CRPS Awareness, Day 09

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 09 – A picture of gratitude in pain

Today I attended a Tai Chi fundamentals seminar during my physio’ time to brush up on my basics and hopefully improve some more. A seminar is longer than my physio’ time so of course I hurt a little more than usual afterwards, but now I am under the blanket on the sofa with my hot water bottle (back in it’s fluffy cover again!) and I’ve just drunk a nice cup of tea.

I plugged in the stereo before I sat down and I have the volume down really low to allow me to listen for a little longer before the noise sensitivity pain makes me turn it off. My music is on shuffle so I am getting a variety of tunes from different genres which is rather fun. For lunch I’ve eaten some fruit and some cheese (the latter to help my brain recover from the seminar). The sun is shining outside and trying to shine in a little through my overhung front window.

I am grateful to be able to spend my physio’ doing something that I love, and to be able to spend the time that I need to recover afterwards. I have my laptop with me, and that means that I have my friends with me too (as that’s where you all live)!

I am sat so that I can see the mantlepiece. On it are some photo’s, some postcards from friends who are also of compromised health and it means so much to me that they took the time and effort to write to me, a congratulations card from a friend about my Tai Chi progress and I love her so dearly that I haven’t been able to bring myself to take the card down yet, and a beautiful heart ornament from another friend who I love so very much. The ornament represents the beautiful friend who sent it to me and, by extension, my besties who I adore so much. Just seeing it there makes my heart swell in the joy of love for my friends. I am so grateful for you all being in my life and for being who you each are. Each day I am stuck on the sofa for many hours at a time, and each day my gaze will fall upon this ornament at some point and doing so I feel lifted, I feel lighter, I feel grateful. Thank-you my friends, and thank-you to the specific friend who sent this to me, you are always in my heart, xxx

Heart ornament

x

Conversations in the Outernet

I don’t really get the opportunity to see real 3D people in the ‘Outernet’. (Or ‘real life’ as most people probably know it)! I get the opportunity to talk to my gorgeous, beautiful friends thanks to the magical power of ‘being online’.

In the ‘real’ world I mostly just see my boyfriend, and our conversations usually involve:

(a) Me wittering on about what I’ve done today and what new information I’ve found out about my condition. Which results in his politely nodding and saying “mmm”, even though he doesn’t understand what on earth I’m on about coz I’ve gone into enthusiastic ‘expert patient’ mode! (Usually when he’s only just got home from work, too. He’s very good to me)!

(b) What we want to watch on TV when we finally get to chill out together…Me: “I don’t mind, babe, whatever you like”, Magic Dude: “I always choose. What would you like to watch?”, Me: “Oh, I don’t know. My brain’s not working now anyway, so just watch whatever you like!”. (I don’t intend to be exasperatingly indecisive)!

(c) Something so utterly random and completely made-up silliness that I laugh out loud but have no idea what we talked about afterwards because it was that random!

Or (d) practical planning of what we do when, what we’re going to have for dinner, how much physio’ time I have left to do anything in, and so on, right up to the end of the day when he says: “You look really tired. Bed?”, and I can’t help but nod in exhausted agreement! After all, I look and feel really tired every day!

Other than that I do occasionally have the good fortune to have a visitor pop in for tea, but mostly I see two groups of people: My Tai Chi group, and a lot of medical practitioners. There’s not much time for talking before and after Tai Chi, we’ve all got conditions we’re working around and so none of us can afford to loiter. But seeing medical practitioners is full of conversation. With me doing the explaining and them either not getting it, or them explaining to me what they do know to try to figure out if they can understand what is going on.

If only an apple a day made the doctor understand!

My most significant recent conversation like this was with the cardiologist who, as you’ll know if you saw my post the other day, basically presented me with the options of living life whilst permanently nearly fainting or… getting a pacemaker, (which would only help with some of the symptoms, anyway). This resulted in me hanging in there through the appointment, and then blubbing in the disabled loo before driving home. Sometimes it’s just a head and brick wall scenario!

Well, some good has come out of that conversation after all… At my request, I have been posted a copy of the cardiologist’s report that he had already sent to my doctor. And I have found that, for the first time, I actually have ‘autonomic dysfunction’ in writing. It has only been verbal for the past two years and that has made it difficult when talking to uninformed doctors who have so little knowledge about this area that they go back to square one and start doubting the original issues. *sigh* So this letter is a wonderful thing to receive as a result of a very important conversation.

I shall be scanning the letter into my computer and saving a copy on my hard-drive. It’s that important!

I showed the letter to the specialist respiratory physiotherapist to give her the update. And she said….”Oh, he’s only a GPSI..?” You what, now? I didn’t clock that bit! Everyone has been referring to him as ‘the cardiologist’, so I never thought any different, but it turns out that he is simply a ‘General Practioner with Special Interest’ in cardiology. Ahhh-haaaaaa, it all makes sense, now. No wonder he was interested and somewhat informed in my esoteric area of unwellness, and yet not actually trained in-depth to know how to actually treat the oddness. Okay. That makes more sense. But why send a patient with such a rare condition to a general doctor with no experience in treating it? It’s a mystery!

Conversations are great for the heart, for the soul, for creating an understanding and exchanging meanings, (assuming you’re not in a brain fog state at the time, of course!), but sometimes, just sometimes it’s the black and white type that does it.

Hooray for the ‘autonomic dysfunction’ in writing. I am so grateful that he went to the effort to do that.

And oh-ho, not actually a cardiologist. That explains why he had no other options to offer me.

Next on the to-do list: complete my summary of symptoms and quantifying the daily levels in the hope that my doctor understands the severity….then ask to see someone who actually knows how to treat this!

Ah, my work is never done!

x