A few weeks ago, a friend who was staying with me saw me after I’d come back from the pharmacy with a stock of tablets for my colitis. I pulled around 15 boxes and packets out of my bag, and she asked me how much I’d spent on them. Looking at the receipt, I realised that Polish pharmacies helpfully tell me not just how much I spent, but the full price of the tablets. For 75 Polish zloty, I got around 1200 PLN worth of medicine – full price would be about 1/2 of a first year teacher’s monthly salary at our school.The year after I was diagnosed with the colitis, I made the mistake of working out how much money I’d spent on my health that year, and realised it was upwards of £1000. Is it any wonder I don’t have any long-term savings?! Right now, I’m on steroids for a recent flare-up, but I shouldn’t really be – I’ve had too many courses in too short a time, but being away this summer means I can’t start the alternative treatment yet. That alternative is a one-year course of medicine that would cost around $5400 in total if I had to pay for it in full (at least, that’s the figure I found) and there’s no guarantee I’ll be able to take it, or that it’ll work. I’m incredibly lucky to live in a country with a good national health service which subsidises my medicine, and to be able to afford all of these drugs. I’ll be on them for life, unless somebody magically comes up with a cure for ulcerative colitis at some point.
I’ve also written previously about the problems I have with my leg following an accident in 2006. Since September last year, I’ve been seeing a private physio pretty much every week. Over the course of a year, that works out at around a full month’s salary for me. Again, I’m lucky to be able to factor in a cost like that into my life. It’s a cost that won’t be going away any time soon, but slowly, very slowly, I’m seeing the benefits.
A third long-term health problem I have is connected to my sinuses. For as long as I can remember I’ve had problems breathing through my nose, especially the right side. I’ve been variously diagnosed with cough asthma and nasal sinusitis, had tablets, nasal sprays, inhalers…I’ve lost track! And all of them cost me at least a little money. Now that I’m more settled in Poland, I’ve been following up on this over the last academic year, and have now had allergy tests (dust, grass and wheat – nothing that would explain it), an X-ray, a CAT scan, and an endoscopy. The upshot is that one of my sinuses on the left is very small, and the right is overworked and inflamed (I think!). I can have a simple operation called ‘FESS’ which should hopefully sort it out. That’ll have to be completely private though. As the doctor said: ‘If anyone asked if you’re sick, I’d say no. But it’s clearly causing you discomfort and we can try to treat it.’ So that’s 6000PLN (around £1200) I need to save to get that sorted…theoretically. Maybe this problem will go away one day.
It’s not just the money though. None of these low-level health problems stop me from being able to get on with my life, but they do eat into my time. Here are some examples:
- 30-45 minutes every morning doing physio for my leg and hand (too much computer use!), plus 2 hours every Wednesday when I’m in Bydgoszcz to get to and from the physio and have my appointment
- Working out food so that I can eat 6 times a day – thankfully not as carefully as when I was on my strictest diet, but it still takes time and mental effort, especially if I want to not be lazy and just buy stuff, but actually eat some form of balanced diet.
- An average of one visit to a medical professional every couple of weeks, dealing with one or another of these problems (not counting physio). That’s up to an hour for the visit plus the waiting, plus an hour or so to get there and back.
- Time to get to the pharmacy, pick up the tablets, and (often!) go back a second time when they haven’t got what I need in stock. That’s a good 30 minutes per trip, sometimes more if there’s a queue.
- Planning time to organise said visits to the doctors/pharmacy and/or to work out what I’m supposed to do next in my quest to improve my health at least a bit. Thankfully I have some amazing colleagues and friends who help me out with those bits.
- I don’t know how much time each day being frustrated because I can’t breathe properly…
So I reckon that comes to about 12-15 hours a week on average, or at least one day a week! That’s 52 days in a year, or about 1.5 months, give or take.
Mostly I don’t think about all of this too much, because if I obsessed about it, it’d just be depressing. But sometimes it does get me down, especially when I’m already tired, or ill, or stressed, or all three. It’s not the end of the world at all though: I’m organised, I have coping strategies, and I’ve learnt more and more about what I need to do to keep going. They are all a normal part of my life. I distract myself by filling my time with other things. And I focus on the positives as much as possible: these are all investments of my money and time, fending off to some extent what could be much worse if I didn’t make these investments. At least I can afford the money and the time to deal with these problems, and live in a place where it is possible, and have the good fortune that these are low-level health problems. Those things aren’t true for so many people.
If you have your health, enjoy it to the full. Appreciate it. You may not realise just how free you really are until it starts failing you.
Kirsty D Major’s fabulous post, ‘I’m tired – the disability reality that people don’t talk about‘ prompted me to finally write this today, a few weeks after the initial conversation with my friend. There are whole paragraphs in there I wish I’d written, but she did it first and better. Here’s one:
On some days, all this extra work builds up. If I’m tired anyway – because life happened that way, it can make me feel exhausted. Most of the time I just take it in my stride, but each of these things saps a little bit of energy, and when you add them all together, it accumulates.
I don’t want to whine about it. I don’t want others to feel sorry for me. I don’t necessarily need people to come up with solutions because chances are I already have one.
It doesn’t last long. A good night’s sleep, a good distraction – and the next day I’m ready to face the world again with new energy. But on a particularly tough day a couple of weeks ago, I did ask the question as to why we never talk about this.
‘Why do we never talk about this?’ is the reason I keep sharing things like this post on my blog. So many of us think that what’s happening to us is our problem, but if we hear other people’s stories, it starts to normalise experiences, and people can talk about them more freely if they want to.
Please read the whole post, and others on her blog. Kirsty has done more than any other person I know to show me the everyday realities and normalities of being blind. She has shown me what is and isn’t possible for her, and made me try to make sure that my blog is as accessible as I can make it, to try and remove those little stumbling blocks where I can. One example is providing text alternatives for non-text content (those alt-text things in images). I don’t always manage it, but I try!
Another person who has written about the problems with her vision is Joanna Malefaki. I’ve learnt a lot from her about colour blindness, how it affects her life, and what other people can do to help. Her recent post on achromatopsia was particularly important.
Finally, for those of you who have never heard of spoons and how they relate to energy, please read this article by Christine Miserandino. I’m lucky to have a lot of spoons, but sometimes they start to disappear faster than they might for other people.