All I’m going to say is. . .

Enjoying the heat and the sun, and intend to be making the most of it while it lasts!

And before any of you out there start complaining that it’s too hot, spare a thought for those (like me) who enjoy this weather and have to put up with being cold for more than three-quarters of the year. Sometimes even while wearing four+ layers. Surely you can put up with this for a few days, a week if we’re lucky?

See you when the weather turns!

!This is Not a Treatment!

The subject of this post is not a treatment and I’m certainly not recommending people go out and pursue this without due consideration, but for the female sufferers of CFS/ME there is something that might make you feel better. It does require a certain amount of thought, preparation, and commitment however.

Would you believe that getting pregnant offers approximately a 75% chance that your symptoms will show improvement? That’s right. It’s a known (and mostly accepted) fact, although it isn’t broadcast as a treatment for (hopefully obvious) reasons.

There are a few things to consider. Firstly it involves getting pregnant and having a baby. Secondly, the degree of improvement varies from none right the way through to almost complete recovery. Thirdly, in some cases the improvement doesn’t outlast the pregnancy. In other words, you feel better while you’re pregnant but once you’ve had the baby it’s back to how you were. Fourth, a small number of people do feel worse.

Just to make this crystal clear: getting pregnant is not a cure, it can’t even be called a treatment, and I’m not recommending anyone go out and try this.

Can you imagine though. You have a life-long condition and someone says to you ‘hey, there’s this operation with a 75% chance you’ll see definite improvement. The catch is, in exchange you have to be parent to this child.’ Would you go for it?baby-200760_640.jpg

Symptom: Non-Medical Issues

In addition to the numerous, various, and changeable medical symptoms that are part of CFS/ME, people have to deal with non-medical fallout. Below are a few examples:

Emotional issues. These have been covered somewhat already, the main one being depression – not necessarily a symptom of CFS/ME but often a subsequent result, many people with a chronic illness develop depression to some degree. The source of emotional difficulties may lie with the illness itself, (frustration, guilt, anger etc. over new limitations and sufferings) or with outside sources such as how other people treat you and react to the changes you have to make. A greater portion of time spent at home and/or alone can bring its own issues, and then fear and self-restriction can creep up on a person with CFS/ME if they’re not careful.

Relationships. Many people with CFS/ME find they lose friends, fall out with family members, break with partners, struggle to maintain dealings with work colleagues. . . This is understandable when you consider you’re going through a major life change, where many of your routines and habits will need to be altered, and you might not remain exactly the same person as before. It doesn’t make the ordeal any less painful. There is advice available on how to talk to other people about CFS/ME, and this may help, but some people will simply never understand the condition no matter how much either of you try. You may be able to stay friends with these people, you may not. If you usually end up feeling bad after seeing a person, it may be you have to make the decision not to see them any more: you will most likely have enough to feel bad about without someone else making things worse.

Personality changes. This is not a definite thing, but it seems to me that if you have a serious, long-term condition which has a history of other people misunderstanding it and treating sufferers poorly because of it, you are more than likely to see some changes here. Especially as, if you are to have any hope of managing the condition, you need to make life-style changes. Depending on the severity of the symptoms, changes may only be small, they may be short-term. . . or they can be permanent. Smaller changes might be that you take up a new hobby – yoga to help with stress, a craft to fill in time if you have to reduce your working hours. Your mood may become more uncertain, especially while you first adjust, and later it could depend on if you’re having a good day or bad.

A bigger change might be if a lot of people around you see you as becoming withdrawn, lazy, selfish – very negative viewpoints on what you have to do to manage CFS/ME. Having to give up work can also leave people with something of a difficulty, both emotionally (work can be very tied in with identity and sense of purpose) and practically (what to do about money, finding a useful/productive/fulfilling way to spend your time)

Money issues. These arise from having to reduce your hours, go to part-time work, or give up work altogether. Having money worries can lower your self-esteem and leave you feeling inadequate, take away your self-sufficiency, and cause additional stresses. It can also have a negative impact on your diet, and limits your available activities. It’s hard/impossible to get disability benefit when you have CFS/ME unless you are in a bed-bound situation and have no possibility of working at all.

Filling your time. This can be challenging as you have to suit your activities to your current abilities, and these can vary hugely. It’s also hard if you’re used to being in work and you suddenly find yourself with empty days to fill, days when you can’t do things you used to do on a day off.

These are a few of the non-medical things that may not be immediately apparent to either those diagnosed or those around them, but I believe (unfortunately) that all people with CFS/ME will face these at one time or another.

 

 

Weekend Binge

Sometimes I just don’t really want to do anything but sit down in front of the tv. Anyone else get that? Unfortunately I don’t like most programs on actual tv, so I have to find a series or film to watch. These days (theoretically) it’s not so hard what with cheaper DVDs and services like Netflix, but you still have to pick something and there’s tons to choose from. I’m bad at making decisions like that. Big things I’m ok with, it’s the little things that hold me up.

This weekend I fell back on one of my old go-to’s: Jurassic Park. That’s right, I indulged in a four-film Jurassic binge. It was great. Good films, no need to decide what to watch next, weekend taken care of! (I don’t do this too often, but every now and again doesn’t hurt) I know most people don’t like the later films, and technically the latest is ‘world’, not ‘park’, but what the hey. It’s part of the same series.

The original film I love – and I’ll try to argue round anyone who doesn’t. The first excitement of genetic engineering and creating dinosaurs, the special effects which I think stand up positively even against some of today’s stuff (I’ve seen new effects that are worse and less realistic than the Jurassic stuff), the epic music. . . How not only do the baddies get theirs, but some of the good guys don’t make it either. The revelation of dinosaurs as something other than scary monsters, although they can be that too. The development of the characters as you go along.

I’m not going to go through all of them, although I will say I think they maintained the original sentiments of Jurassic Park in Jurassic World while adding new things to it to keep it relevant and fresh. Something else they maintained: the presence of only two named female characters. Compare that to the number of males running round.

  • Jurassic Park: paleobotanist Ellie Sattler, and Mr Hammond’s granddaughter Lex
  • Jurassic Park II: paleontologist Sarah Harding, and Ian Malcolm’s daughter Kelly
  • Jurassic Park III: Amanda Kirby, and a brief reappearance of Ellie Sattler
  • Jurassic World: Claire Dearing and Vivian, with brief appearances of the children’s mother, Karen Mitchell

I don’t analyse the films I watch all that much, sometimes I guess I do it more than others though, and I’ll notice different things. Like this time I noticed the female characters because I’ve been reading and hearing quite a bit about both feminism, and the portrayal of females in books and film. If you compare the latest Jurassic film to the first, the female characters have actually gone backward in many ways, and suffer somewhat by comparison.

And now I’ve started going on, when this was just meant to be a binge confession! That’s writing for you, easy to get off point, which is why you’re meant to plan it. Plan shman I say!

 

Mindfulness

I said a while back I was going to do something on mindfulness, and it’s taken this long because I hit a few hold-ups along the way. First computer issues, then health issues, and then there’s just so much stuff out there about mindfulness, and some of it is. . . not contradictory exactly, but it seems to have become a bit like yoga: some of it has become ‘popularised’, and then there are a lot of different methods. This being the case, I fell back on a few go-to sites.

The NHS has a page on mindfulness (here) which gives a basic description as well as links to find out more. It describes mindfulness as “knowing directly what is going on inside and outside ourselves, moment by moment.” In other words it means being aware of yourself and the world around you, and taking time to notice both. The idea is that mindfulness encourages an appreciation and enjoyment the world. It can also help with stress and depression both through the fostered connection between person and environment, and by helping people to notice the signs of stress or depression and deal with them.

In addition to the general introduction – which is one of the clearest and most reasonable I’ve seen for mindfulness – I really liked that toward the end there was this comment:

“Mindfulness isn’t the answer to everything, and it’s important that our enthusiasm doesn’t run ahead of the evidence,”

My next visit was to Wikipedia, which had the same basic definition: mindfulness is a process by which people focus their awareness on internal and external experiences taking place in the present moment. It had a lot more on the psychological aspects, its origins and links to Buddhism, and how it can be used in different settings. It added that clinical studies have come up with results suggesting there are both physical and mental health benefits to practising mindfulness, and it be of benefit to healthy people as well as those with various medical conditions.

The final site I visited was Be Mindful, which had something of the same definition but presented in a way that instantly put me off. (Don’t ask me why because I don’t know, but a lot of the mindfulness stuff just makes me want to cringe/laugh, then run away while wishing desperately never to hear anyone talk about it ever again) Be Mindful advocates the use of mindfulness techniques as tools to manage your wellbeing and mental health. This includes its use to alleviate stress, anxiety, and depression by helping people manage difficult experiences and situations. There is information on evidence and research, finding a teacher, learning online, and FAQ’s. They also do an online stress test.

The two most common link-ins with mindfulness are meditation and yoga, I guess because both of these skills promote taking a bit of time out of a hectic day to slow down and breathe. And there’s the whole self-awareness and breathing techniques aspect.

I’m not going to go into any of this any further right now because a) I don’t want to bore anyone not interested even if those people stopped reading after the title, b) I’m sure most people reading this blog are more than capable of typing in a search term and finding these things for themselves, and c) I don’t see much point in merely repeating information that’s already out there.

As always, let me know if I’m wrong!

Overdoing Things

Why?

Why do I do too much when I know it’s a bad idea? That I’ll suffer for it – sooner rather than later and for longer than expected. There are all sorts of reasons. Last week I did too much for two three main reasons: in support of family, because the weather was pretty good, and because I was feeling better than I had for a while. Now of course, I’m feeling worse than I have for a while.

All weekend, in fact since Friday afternoon, I’ve been feeling pretty lousy. Now this could all be self inflicted, but it could also be weather related – it went very changeable, and from warm in shorts to shivering in trousers and jumper – or it could be alternate health-related in that I was fighting off a cold – I was tired, sneezy, queasy, and grumpy. Which are not Snow White’s dwarfs, but which could be hay-fever instead of illness.

Does it matter which it was? Maybe not, because I felt (and feel) awful either way. Maybe I just needed a place to ramble/rant and this is it. Then again, maybe it does matter, because maybe this is the reason I keep falling foul of my CFS/ME: if when I get to feeling better I push a bit harder, don’t keep as close a watch on how I’m feeling, make myself vulnerable. . . boom and bust. Classic CFS/ME.

You’d think I’d know better after nearly 20 years, but apparently not always. That’s going to change though. I hope? I’ll try?