When I was on Radio Leicester, the presenter asked me if I felt ill. I answered in my rambling fashion, but I realised afterwards that I’d perhaps been a little too upbeat – people listening in will probably have imagined, because I gave them no reason not to, that I have fewer symptoms than I do.
I think it’s because I don’t really like carping on about it. I don’t really want to be defined by my illness, and also if I concentrate on the bad stuff I’ll probably dwell on it more. I’d rather concentrate on the things in life I’m happy about. Also I’d feel like a bit of a fraud if I did bang on about them, because i know from talking to people that others with PKD have it far, far worse.
Anyway, for the sake of illustration, I’ll try and describe the effects I feel.
- Persistent tiredness. When I wake up, I already imagine how nice it would be to have a nap. Then, througout the day, I’m just always feeling sleepy. Not so much that I can’t do anything done, but as if I’ve not had enough sleep the night before, even if I’ve had 10 hours. Not a nightmare, but the most persistent, ever-present symptom. Fortunately going out on a long bike ride makes it go away, at least during the ride!
- I feel hung over, and slightly stupid. I’ve always valued clarity – like most people of my generation, I spent a joyful few years getting completely out of my face, and then by the age of around 20 realised that being sober and feeling clear was far preferable. So I don’t drink very often at all. Now, though, presumably because my blood is packed with stuff my kidneys haven’t got rid of, as well as feeling tired I often find myself feeling a little stupid and confused. A bit like being slightly drunk. It’s not the worst thing in the world, but as a fan of feeling sharp and in control of things, it’s disconcerting.
- If I stand still, or sit in the wrong position, my abdomen hurts. This is a purely physical action – the cysts make the kidneys physically large, so they crowd the rest of the organs down there, and my spine. Standing still in pubs is a no no – if I have to stand still for more than five minutes, I’m really uncomfortable and need to sit down. Even if it’s just a minute or two I’ll normally find a seat. Queues are a real pain. I get odd looks because I don’t look like I’d need to sit down (the old “invisible illness” thing that many people have). I’m fortunate, however, that I can walk without pain and cycle without pain. I do have about ten pillows at bedtime though, so I can prop myself up in a comfortable way. This, I tell myself, is entirely kidney related – but I may just be a pillow freak.
- Occasionally, I burst a cyst. Some people say this is agony – luckily, for me, it’s never been that. I feel a twinge, and then a slight internal pain. Like something has torn inside – it feels ragged. It can make me feel slightly nauseous. Over the next few days, my urine will take on a coca-cola tinge. That’s never fun to see. A couple of times I’ve had chest infections over the winter, and coughed so hard I’ve burst a cyst. That *SUCKS*. The coughing aggravates the pain from the burst cyst after, too. Once I got a kidney infection from the burst cyst as well as the chest infection, and had to have a course of antibiotics. I spent a fortnight sitting in a rocking chair looking like death – I’ve never felt more ill in my life. Fortunately, it cleared up. I burst one on the Leeds ride, but fortunately it wasn’t too bad. I just spent most of the day saying “I think I’ve burst a cyst”. When the blood came two days later, I was vindicated!
- I can’t eat without thinking! Because my kidneys are so far gone, I can’t process potassium or phosphorus well. I have to avoid foods high in either. Practically, for me (being a vegetarian), this means few potatoes, whole wheat, tomatoes, beans, milk, cheese, cream and other things. Fortunately being veggie makes the diet a little easier – but it would probably help if I ate fish. I muddle through OK, but it is very annoying not being able to eat pizzas, baked potatoes, chips, crisps etc. I do let myself have a small portion of chips once a week. Once I get the kidney I am going to destroy a baked potato every night until I’m sick of them.
So, that’s all I can think of at the moment. Suffusing it all is the feeling of knowing it’s only going to get worse – but pessimism is ameliorated by knowing that I’m incredibly lucky to have a kidney lined up. Most people in my position are looking forward to surgery in preparation for an uncertain amount of time on dialysis while they wait for a kidney to come up on the donor list.