This is just a diary style post to record the everyday problems I have – their frequency an impact. Ok. Because I am chronically Anaemic, I have to take Ferrous Gluconate (Iron) twice a day. The problem with this is that combined with the Codeine I take for pain the Iron causes severe Constipation. I’ve been hospitalised with it before. After the worst episode, I stopped taking the Iron but got so sick I had to go back on it, my GP gave me a laxative to help out. Laxido is a powder you drink, you can take up to 8 sachets in 24 hrs, and you do when you start, well I did. Laxido is a Osmotic Laxative – it helps you retain water in your stools to keep them soft. However, after a while, the Laxido stopped working. I was then put on Bisacodyl which stimulates the bowel. And at first this worked. One tablet at night, and the next day, normal function. But of late this has not been the case – I take the tablet and the next day I would get violent diarrhoea. Then that changed to take a pill and nothing would happen. This would alternate – I would have no idea of what was going to happen, even when I took the pill only once every three days. It became a game of anal Russian Roulette. A game that stopped me from leaving the house. So I started only taking it when I knew I had nothing planned – no appointments, no volunteering etc. Which was both useful (I did not have to worry about soiling myself in public) but also depressing. In response to this I decided not to take it during the week (and thereby not defecate for a week – nice) and only take it at weekends – so I would not go out then. But don’t worry – I was getting exercise – I was running back and forth to the toilet. Dreading what was going to happen, barely getting sat down before my stomach started to burn and bubble. After rabbity solids, there would be healthy stool which was a cause of short rejoicing, for after this would come water. Constipation causes Haemorrhoids – also known as Arse Grapes and Chalfonts*- anal bleeding and headaches. It is not nice. People like me joke about it because it’s so obviously horrible. It is common in Hypermobile people because we have floppy, stretchy insides.
Then there is the Anaemia itself. This is one condition I find very interesting. For years my blood tests threw this up, but doctors just ignored it while using it as an excuse or reason for other of my problems. So, when I failed to heal after an operation or even after a bad graze**, it was put down to Anaemia. So too my extreme tiredness. But it was never explored or really treated. It was a decade after my EDS was diagnosed that the side effects of my Anaemia were clarified: my easy bleeding and slow healing is caused by EDS, but complicated by it. My tiredness is part the side effect of pain, part the product of depression and it’s medication and part Anaemia – you see the drift. However, there are 3 things that happen to me that are definitely caused by our friend Anaemia – 1) Very heavy, long menstruation. A week, a full 7 days of ruined sheets and unhappy pants. The heavy bleed supports the condition that makes it heavy…a Mobius strip of red cell reduction. 2) Breathing difficulties. These were a surprise and are alarming. Walking up my stairs to bed, I found myself gasping and getting no air – I imagine it’s how a Vampire would feel. I breathe in and out, but I can feel nothing in my lungs. I get light and then heavy headed, and tight and sore in my chest. Now this happened a lot when I was young, and I was told it was stress; but after beginning regular Iron I realised it only happened if I ran out of pills. Sometimes I have forgotten to take my pills and this problem – extreme and sudden exhaustion and then lack of breath- kicks in rapidly. In order not to suffer this, as it is very debilitating – more so than pain – I have a friend send me an Iron alert, a reminder for me to take it. 3) Styes. Anaemia makes you ‘run down’ for you can’t absorb vitamins and nutrients when you’re Anaemic, which makes your condition worse, again, a Mobius situation. If I’m ever unsure of what is going on in my blood, a Stye will form and tell me. A pus filled blob on my right lower eye-lid. Always the same eye, and same place. I lack eyebrow and lashes in various places due to Chicken Pox as a child***, and my Stye turns up in a Pox scar. It can arrived in mere hours: I once had one develop (a beaut) in the 90 minute train journey I was on between London and Bristol. Lovely.
Anaemia is very common in women, but is not really considered a serious condition – you don’t see posters and campaigns to make people aware of it. It’s a slippery condition. But it is serious. I didn’t take much notice of it until my Dermatologist (one of the best all-round Doctors I’ve seen and so kind) made me take note. She saw my blood tests and told me I had less than 1/2 of the Iron I should have, and also only a 1/3 of the Vitamin D. She explained that they go hand in hand, that when your blood is sick, everything is sick.That though I am far from thin, I was technically malnourished. She made me try a more organic approach to Iron – I had to eat rare steak. I ate steak every night for months, with spinach, but my blood did not respond. It has to the 600 mg of Iron I take as pills. My Iron levels are not normal, but they are better. And I notice the difference.
I’m a convert preaching – always an annoying thing – but I say take any hint of Anaemia seriously, and ask your GP to be checked for it. So too Constipation – don’t live with it if you don’t have to, it’s not normal. It’s embarrassing, but there again so are your School photos (usually) and you’d talk about them.
*Cockney Rhyming Slang: Chalfont St.Giles= Piles. So, ‘Chalfonts’. I have been known to break out into ‘Burning Ring of Fire’ in the style of Johnny Cash when things get intense back there.
**I bled through my sutures when my Gallbladder was removed, and once when I grazed my knee as a child I had to be taken to hospital because it would not stop bleeding, and then because it did not heal. I still have the scar. Having elective (plastic surgery) is not encouraged for EDS people because we heal badly, scar badly and can end up with very lumpy Keloid scars.
***The Chicken Pox I had aged nearly 3 was horrendous – I had scabs on my eyelids etc. I still have many of the scars, which of course were very bad because of my EDS. Remember this if you are EDS and you have children who may be EDS too – if they get Chicken Pox or Measles, or lots of insect bites, they have a higher chance of scarring badly.
The title of this post is based on the words to ‘America The Beautiful’ by Katherine Lee Bates.
‘Mobius II’ by MC Escher – 3 colour print. 1963.