Staying sane in chronic pain: Having a mental clear out

Chronic pain is a way of life for a lot of people who suffer with it. While there’s a lot of importance in not letting it take over who you are, it’s hard to separate your condition from life itself. I haven’t posted on here for a while, and the reason is that I’ve been increasingly struggling to stay sane in the face of a condition that’s hard to manage and impossible to get a real hold on. It’s not easy to know what to expect, so default feelings turn to worry, worry turns to stress and in time it’s all you become.

This is not a good way to live. While it’s vital to take your condition seriously, and do everything you can to stay in the best health possible, I think the biggest battle is keeping your mind clear and able to function on a normal level.

I had to take a massive step back from everything around me that pointed towards chronic pain, EDS and the illness that’s overshadowed my life for the last few years. I removed Facebook groups from my feed, stopped replying to emails and tweets and moved away from this blog. I concentrated hard on getting a new job, went away on a break with friends, put more time and effort into my other website, and slowly I felt better.

How do you stay sane in chronic pain? How do you keep your mind focused on the light at the end of the tunnel when you can’t see it? I don’t know the whole answer, but I think a lot is about clearing your mind and sweeping aside everything that brings you down. Kind of like having a mental clear out every so often. I don’t want the work I’ve put in on this blog and the community I’ve built online to go to waste, so I will start blogging more regularly again, but I think it’s very important to take some time to try and be you, rather than be a person in chronic pain, and that isn’t always possible when you are surrounded by prompts and reminders.

I was fortunate enough to get away from it all (kind of, we all know you can’t banish pain for a holiday) to an immensely peaceful place and just relax for a couple of weeks recently. I’ve been getting edgy and worried again lately, so in a couple of weeks it’ll be mental clear out time again. I recommend anyone who feels like they are completely drowning to try and do the same. Oh and it’s Friday! So there’s a reason to kick back and take a few deep breaths. Happy weekend spoonies. 

EDS awareness month- Taking a break from chronic life

So It's been a while since a post appeared on this blog. I've been distancing myself from thinking about EDS and everything that comes with it lately.

I've been having a lot of appointments about symptoms that may or may not be related, so I can't completely forget about it.

As it's EDS awareness month I really wanted to write about stress. Being chronically ill, as this blog has covered many times, comes with enormous amounts of stress. My stress reached a scarily high level recently, spurred on by worrying about my health and waiting for results and doctors to reassure me. Chronic pain is basically impossible to have without also having a lot of stress. The combination of everything you have to deal with is a perfect storm of mental unrest.

Something I feel has become important to me and that I feel people should try if they can, is creating some distance. It's not that easy for everyone, because my symptoms are much milder than a lot of others, but it can be done. I started by hiding groups I had joined on Facebook, and not opening links about sad stories of death and patients suffering or how the new government will impact healthcare. I just couldn't read anymore. I also stopped talking about it. Just for a week, I didn't mention it to anyone at all. I still have pains and aches and massive clouds of brain fog that I would usually moan about but I decided to try and remove myself from being a person with EDS.

It worked. I felt calmer, less worried, less scared and started sleeping a little better. I also stopped googling things related to EDS and checking Facebook groups and Twitter for symptoms that sounded similar to mine.

My geneticist mentioned that a lot of people with EDS become fixated on finding people similar and with that comes more anxiety and more concern about symptoms you might not even have yet. I told her all about this blog and how much I had gained from it, and also about how I felt I was too wrapped up in it.

Her advice of having a short break was completely ignored at first. I basically just continued as I was and carried on getting more and more worked up. I almost cancelled hospital appointments in fear of more bad news and that's when I decided it was time.

'Removing yourself' from something that pretty much runs your life is no easy task, but even if you can do it for a day, it's so refreshing. Hiding social media groups or not contributing to awareness for one week doesn't make you a bad person. Everyone needs a break sometimes. We have breaks from work and breaks from people, so since chronic illness is a full time burden, surely we're entitled to a break of sorts from that too?

Feeling normal with a chronic illness

From the moment you wake up until the moment you fall asleep, you go through a roller coaster of emotions thanks to being chronically ill. Are any of those emotions a feeling of 'normal'? Probably not. I say probably not because it's HARD to feel like everyone else. It's hard for a number of reasons. Of course there is those of us who have chronic pain, chronic fatigue, symptoms that mean working is out of the question, symptoms that mean you are limited. With all of these comes the feeling of disappointment. 

You feel disappointed in yourself for not being able to do enough, disappointed in your body for constantly making you feel awful and disappointed in the time you spend doing nothing because it's all you can muster right now. It's of course completely fair enough to feel this way, because it's HARD to be ill constantly. Harder than you can ever truly communicate to others. It's even harder when people look at us and have no earthly idea about the pain or the tiredness or the sickness or how hard it is to even show up to life in the morning, let alone a job. 

The one thing that I have found useful of late (it's been a HARD few months) is to make sure I refer to myself as normal, despite the fact I am far from. I have been going out, balanced with spending 6 days across Easter not moving, I am going on holiday, I keep booking holidays and I try hard to attend all birthday and social events. I don't then put an immense amount of pressure on myself to go, because I know my limits. I'm having a hiatus from alcohol, which makes me even more different to my friends, but by going out and joining in, I feel normal. By going on holidays, even if I just lay down in the sun for a week while everyone else does watersports and goes snorkelling, I feel normal.

Feeling normal keeps me sane. It's when I constantly dwell on how set aside I can feel when symptoms are bad, I start to feel like I'm going mad. My normal might not be everyone else's normal, but it gets me out of bed in the morning.  

10 important things to remember when you're having a bad pain day

1) Think about how much your body hurts right now and how much you have to deal with. Really think about it. Now think about how amazing you are and remember that you fight a battle every SINGLE day but still come out the other side. Basically, you're a bloody warrior.

2) Films, TV and good books exist to give us somewhere to escape to. Use them well.

3) You might be seeing a bit more of your bed than you want to at the moment, but imagine how much you miss it when you're at work or busy with life. Just snuggle up and relax, you deserve it.

4) You can write about it. Just write down how you feel. Write down how frustrated you are. Write down a list of things you'll do when you feel better. Writing is definitely a kind of therapy.

5) It might not seem like it, but there are people who know what you're going through. You really aren't alone. It's worth trying online forums or Twitter communities.

6) There will be a better day soon. There will.

7) Fresh air makes a big difference. When you're stuck inside it can become claustrophobic and miserable quite fast, try and sit in a garden or even by an open window and take in a bit of the outside.

8) Cuddles are free.

9) Remember the next time you are out and about and feeling better to pick up some stuff to make home a little brighter. Flowers, candles, postcards, bright cushions or even giant homemade sign to remind yourself how strong you are. Having a more pleasant environment makes the pain times a little easier to put up with.

10) Just to re-iterate- YOU ARE QUITE AMAZING. It really is quite important to keep that in mind.

10 simple ways to cheer up and combat stress

Being chronically ill is no laughing matter. It's stressful, tiring, draining, often painful, sometimes expensive, repetitive, frustrating...You could go on and on with the negative talk. However, every so often, I see amazing inspirational stories shared online, by charities or fundraising accounts about how people are getting on with their lives and about incredible achievements.

It's good to have ways to perk yourself up when you're having a bad day (or a bad week) so here's 10 good places to start:

1) Do something therapeutic. Writing is my number one therapy, as you may be able to tell. I write this blog as often as I can , and I also have a lifestyle blog which focuses on other topics. I've found lately that having a really nice notebook to jot down ideas in has motivated me to write more, and this is a big step to feeling refreshed when I'm having a down day, or when my shoulders have been throbbing for ten hours at work.

2) Find an 'easy hobby'. It's all good and well doing something like golf or swimming or taking classes as a hobby to take your mind off of your stresses, but for the chronically ill these kind of things can be a stretch. I've read a bit of stuff about 'laying down hobbies' which sounds like sex, but it actually means things you can just do while lounging on the sofa. My newest hobby is Pinterest. Laying and 'pinning' photos of amazing kitchens and beautiful home decor provides me enough of a distraction to start to feel better about my day. I can also do it in pyjamas in bed or while having a break at work.

3) Go outside. If it's a nice day and you can, go and breathe some outside air, even if only for five minutes.

4) Write a list. When you can't achieve much it's easy to forget about the small things you do get done. A list with even the smallest of tasks on is satisfying to tick off. Shower- TICK.

5) Arrange a moan date. I do this with my friends a lot. We literally gather in my kitchen on a Friday evening to eat food and moan. The moaning soon subsides to laughter and we make each other feel better. If you can't do it in person, do it on Skype! You can even have a glass of wine 'virtually' together.

6) Look into mindfulness. Meditation is something I'm slowly being persuaded to try. I can't say for myself that it's been of help, but my biggest stress is health woes and I've been told by about five different people now that meditation is the answer to feeling calmer. You can get phone apps for it, some for free, so I am going to give it a go. If it's amazing I'll obviously write it on here sometime.

7) Look through old photos. I am addicted to photos and picture albums and even scrolling through tagged photos on Facebook. Looking back on a time or even a single event where you were clearly very happy can remind you that it's not all bad. Good things DO happen.

8) Think about deleting some things that make you stressed. A while ago I culled loads of Facebook I joined about symptoms and illnesses because seeing these everyday on my feed stopped being a form of support and started making me freak out about things I didn't need to. I have re-joined some and found different ones I find more useful and it's much better.

9) Schedule in an hour a few days in advance where you do something for you. A facemask, read for an hour, have a bath, read to your child, go for a walk, online shop, paint your nails, have a nap. Whatever you fancy,

10) Try and have something to look at that cheers you up. Not everyone can continually fill their house with flowers, but what about a framed print with some motivational words? Or even just something funny. Etsy do tonnes of these. This is a personal favourite:

6 changes to make 2015 healthier

Living with illness or not, everyone knows it's important to make some effort towards being healthy. Those who have experience of living with a condition  will also be aware that having good health and being in good shape can improve your outlook. Exercising much more in 2014 made a difference to my hypermobility, so in 2015 I want to continue with the positive changes. I spent ages on Sunday trawling through websites and blogs to look for some inspiration of things I can put into action, and these are my chosen 6:

1) Drinking a mug of warm water and lemon in the morning

For a long time my first drink every morning was coffee, which is not good and I have tried really hard to cut the habit out. I've heard a lot before about trying warm water first thing. It apparently helps with digestion, can be a natural way to help alleviate pain, can help with constipation and weight loss. The lemon is a good source of vitamin C, good in these winter months when there are germs a-plenty, and is also a natural anti-bacterial product. My hairdresser also swears it does wonders for your skin, which is always a big advantage.

2) Using a health app

I rarely put my iPhone down and I know I'm not alone in that. Health apps are being used more and more and I get lots of emails at work advertising new ones. They cover literally everything, but a good general one that monitors your intake of food and drink and exercise is a good place to start if you have nothing really specific to target. My Fitness Pal has long been a favourite of mine. I used it loads when I was a student and wanted to stop neglecting my diet. It basically tracks what you eat and drink against how active you are and tells you what you should be aiming for each day. It's great for weight loss if you want to slim down, but you can also use it to just make sure you aren't over or under-indulging and even to gain weight if you need to. It's free to download and really user-friendly.

3) Eating fruit before anything else

I've always been fairly good at fitting in fruit and veg in my adult life. What I do find though is that I cram it all in during the afternoon or evenings, meaning I am less likely to get the recommended 5 a day (or 7, depending on if you can handle that much!) which I would like achieve. Eating a piece of fruit first thing is actually pretty easy, especially something easy like a banana or apple. Including it in your breakfast helps too, but if you are busy and in a rush, grabbing something out of the fruit bowl is ideal.

4) Using fresh ingredients instead of jars/packets

This would depend a lot on how you feel about cooking and how much time you have. There are lots of great recipes out there for class dishes like spaghetti bolognaise, chilli con carne and curries that can be made fresh with spices and vegetables, rather than using shop-bought jars and packets. It's actually not that difficult either and you can alter things to be more to your taste. Once you have a good stock of spices in your kitchen, you don't even need to buy much each time you make a meal. Simply scratch is a really nice site that has a lot of recipes on, if you are looking for a place to start. I also want my weekly food shop to look like this more often:

5) Alcohol swapping

Okay, so if you love wine, this is a hard one. I LOVE wine, it's a complete guilty pleasure and I could could easily have a glass almost every day, which I don't, but still. It's also up there with the most fattening of all the beverages, which is sad. I'm going to attempt to switch from drinking wine to trying spirits with soda/tonic or low fat soft drinks. This may or may not go well. A couple of friends have mentioned in the past how much this has helped them lost them weight along the way, which isn't my goal, but it seems a bit healthier. Well, as healthy as it can be where alcohol is concerned. There is no way red wine can completely be banished though. No way,


6) Do more things I enjoy

Mental health is just as important as physical. Being happier overall is far more likely to make me succeed in the above, because when I am happier, I am more motivated in general. I ended last year stressed, tired, overworked and a bit fed up, which had a negative impact on my general well being. I'm going to attempt to do at least one really fun, enjoyable thing a week, even if it's something silly like watching Bridesmaids with my housemate for the 393485th time. Smiling is good for you, laughing is good for you, so it's time to do more.

I'm not looking at these as strict resolutions, because they won't all last or work out, but it's good to have things to aim for. Happy, healthy 2015!