Sunday, 25 June 2017

ME Symptoms and Tips: Period Problems

Hello my lovely loves!

Tarantino Time. The Communist Manifesto. The Red Wedding. Lady Macbeth's Travelling Sideshow. No matter what you want to call it, pretty much every proud uterus owner has a love/hate relationship with their periods.
Unfortunately, that's a relationship that only gets more complicated when you're an ME/CFS sufferer, so this time we're discussing what happens, and what can help make things run a little smoother.

Furthered fatigue
Periods are pretty tiring, and leave you with a general feeling of "oh god, why?!", but when you're already barely functioning that can quickly become torturous.
For me, I drop in energy levels between 5 and 10% on the ME scale once a month without fail. Given that I'm only around 18% on a good day anyway, that does not leave me with a lot of wiggle room. Earlier in my recovery I would be bed bound for a week out of every four. (The joys of a long period and a short cycle.)

My experience is pretty common, though. Things tend to go one of two ways for ME sufferers; either your periods feel ten times worse than they usually do, or you stop having them all together.

There's some debate about which is worse, but I'm just going to go ahead and say they are equally crappy for different reasons; the former because it puts your energy levels (and therefore recovery) back every month, and the latter because worrying about your condition is enough without having to also think about potential fertility problems.

For me, I'd rather have bad periods than no periods, but obviously it depends on the person. Some people suffer so much they decide to have hysterectomies because their periods effect their energy levels so terribly. That's pretty rare, but it really gives you an idea of the effect periods can have on someone suffering from another condition.

Even though male sufferers have their own set of troubles, I do feel a little jealous that they don't have to deal with the constant peaking and troughing of periods. Particularly as it becomes incredibly difficult not to trough everything edible in sight once a month.

Considering contraception
A common decision for sufferers is to go on contraceptives to prevent periods and give the sufferer a break from the hormonal fluctuations.
Unfortunately, given the myriad of options, and the sensitivity to medications a lot of sufferers have it can be difficult to find something that works.
If you're already on one that works for you, you have a major advantage.

I did try to go on the pill myself to have a break from the relentless hormonal rollercoaster, but the one I tried made me violently ill every night for the week that I managed to take it. 
I decided not to try more options at the time, because I didn't feel like I was at a level where my body could take that kind of knock on a regular basis, but I might in the future, and it is something that helps a lot of sufferers.
To be honest, I was just so tired after a week of vomming that walking around like a geriatric John Wayne after a prostate exam once a month seemed like the more appealing option.

Period pain
One thing I do struggle with a lot more is period pain. I'm not sure if it's actually worse, or if I just have less energy to deal with it, but it's like my body's decided to invest in a small scale industrial digger to have a go at excavating my insides.
I don’t think it helps that I’m not able to distract myself from the pain as well as I would before, simply because I don’t have to energy to.
The cramps usually triggers IBS as well. Gut problems are common during periods even for non-sufferers, but IBS is particularly common in those with ME/CFS. The combination of the two usually leaves me attempting to wrap myself in as many soft things as possible, while everything from ribs to knees does the Skywalker yodel like it's 1980. 

(Or 2005. I guess it depends on your Star Wars meme preference.)

By the way, if you've never experienced a period, but have experienced IBS, the two don't feel that different (in my opinion); one is just lower down. I always wonder if the clenching feeling of the period cramps trigger the gut into its own peristaltic contortions.

You have to be careful what painkillers you use when you’re a Spoonie. Some medications don’t have much effect on ME/CFS sufferers as they would otherwise, and some have more, so try things, but do it carefully.

It's common for Spoonies to be on antidepressants, but being on certain types of antidepressants can make your body more acidic over time. This in turn can make your stomach more sensitive to certain painkillers.
I'm on Citalopram, so I'm not allowed to take anti-inflammatories, like ibuprofen and aspirin.
I always used anti-inflammatories for pain before I got ME/CFS, and paracetamol doesn't have much effect on me, so I once tried to deal with a particularly bad period by alternating the two painkillers. 
It irritated my stomach so much that it triggered gastritis, which was excruciating. Take my advice, and do not piss about with anti-inflammatory painkillers when you’re on antidepressants. No one wants to live on plain liquidised porridge for a month whilst waiting for their stomach to heal.

The doctor did prescribe Naproxen (a common drug used for more stubborn period pain) but after the lingering stomach sensitivity from the gastritis it didn't work out for me. That's not to say it doesn't work for many, many people, so if you have severe cramps, it's worth discussing with your doctor. They may also prescribe Codeine.
I usually rely heavily on small doses of paracetamol, hot water bottles and the foetal position.

Pacing for periods
One thing I would say to sufferers is this: if you know your period takes it out of you, remember your pacing and try not to do too much around that time. 
Use a period tracking app if you want (or an old fashioned calendar, whatever works for you), but try to give yourself a couple of days before or after where you can take it easy.
I try to make sure I don't have any visits from friends or medical appointments on the first two days of every period because those are the worst ones, and I know I'm completely useless on those days. Those days are for hot water bottle worship and swearing.

Up your iron intake
If you are losing blood you need to make sure you have the means to make up what's lost, particularly as ME/CFS means you're potentially going to struggle getting the nutrients you need from your regular diet at a normal rate. 
Eat more red meat, have some dark chocolate, or, yes, eat more spinach.
I know a sufferer who has steak every month. It sounds mental, but I genuinely find it helps. I do the same thing after blood tests.

Try heat and cold
As well as the more traditional hot water bottle, you can also try cold packs to deal with cramps, especially if you’re a sufferer that runs hot instead of cold. A friend who has fibromyalgia always uses this method; it was recommended to her by some nurses.
I personally prefer the hot version, which is why I say...

Three cheers for Eduard Penkala 
Every month I give particular thanks to Slavojub Eduard Penkala, the inventor of the modern hot water bottle. He also had a pretty epic moustache.

Thanks, dude. I owe you so much.

It’s entirely possible your PMS will be worse, because you’re more tired and less able to deal with it. That’s perfectly normal, so just be kind to yourself.
Put an alert on your phone a few days before you’re due to start so you know why you randomly started crying at videos of cats on the internet.

If you're not gifted with the joys of periods and are just reading this to be supportive, firstly, thank you, and secondly, please cut your sufferer some slack. We're sorry if we cry on you, or get really angry about something ridiculous. We're just as confused as you are.

Discuss things with your doctor
Most of the time you’ll know when things are normal for you. If anything changes, or you realise you’re experiencing more pain than you think you should be, talk to your doctor. 
ME/CFS can makes periods worse, but if you’re concerned then it’s worth getting checked out to make sure you’ve not got signs of Endometriosis, to put your mind at rest.
If you feel embarrassed, then ask to see a female doctor. It’s always easier to talk to someone who actually experiences the same thing you do.

Remember it will pass
Unless you do have something like Endometriosis, then your period is going to end within a week. It’s really hard to remember that when you’re writhing in pain or too exhausted to move, but try and put your scientist hat on and look for the patterns in your cycle. 
How long is your period going to last? What are the days you get most tired? What days do you have the most pain?
If you can work that out, then you can count the days off until you get through it. You only need to get through the current moment; the rest isn’t your concern. Every second you’re dealing with it is one more you’ve coped, and one more step until it goes away again.

Knowing I’ll start getting more tired two days beforehand, and experience severe pain for the first two (sometimes three) days, means I know why I’m suddenly bursting into tears, and how long I have to last until I’ll go back to normal.

Be kind to yourself
I feel like this is one that’s going to come up a lot in this series of posts, but I’m just going to keep saying it.
You’re already under physical and emotional stress from your condition, so be nice to yourself when Tarantino Time rolls around. 
Periods always suck, but they’re extra rubbish when you’re sick, so get in bed, eat your steak, have some ice-cream, and look at cat pictures on the internet. You deserve it.


Monday, 5 June 2017

Personal politics

Hello my lovely loves,
A couple of people have expressed to me recently their surprise that I get so involved and riled up about politics on social media.
I thought I'd take this opportunity to explain why it's so personal to me, particularly as the UK General Election is coming up.

When I got sick, my parents put their lives on hold and gave their home, their time, their money, and their support in helping me get better. They took me in and have done practically everything for me, including getting me help for my GP, and the NHS in general, finding private clinicians to help me manage my condition where the NHS lacks funding, and helping me apply for benefits to pay for the support that's been so vital in helping me improve.

There isn't a day that goes past where I'm not aware of how lucky I am that I have them to do these things, because, quite honestly, I'm not sure I'd still be here if I didn't.
It's all so terrifyingly obvious to me how impossible it would've been to cope without them; how easy it would've been to give up hope.

When I see those videos of people who've slipped through the cracks in the flawed system and are living in circumstances you can't believe are possible in the 4th biggest economy in the world, or I hear statistics about deaths and suicides related to benefits claimants being assessed wrongly, I'm looking at what my life could've been had I not been so lucky in the family I was given.
That could've been me so, so easily. And it could be anyone, you or someone you love, because anyone can get sick, or become disabled, at any time.

So, yes, I take my politics seriously. Because it is personal.