Keeping up with Christmas and a chronic illness

Christmas is exhausting. There's the lengthy build up that seems to get longer every year. The present buying, the decorating, the arrangements, the logistics, the invites, the festivities and the expectation to do everything and be everywhere. And this is just Christmas in general.

Doing all of this when you're battling chronic illness can feel like climbing a festive mountain where the fairy lights aren't quite so twinkly and the spirit isn't quite so cheerful. When you enter the festive period already exhausted and burnt out, it's hard to come up with that second burst of energy. That last, bright spark you need to bring the year to a close in an explosion of seasonal joy can feel out of reach.

Many chronic illnesses see their sufferers having to deal with fatigue. There are days when even showering is too much of an ask, let alone shopping, wrapping, visiting, cooking and going for drinks. There's also the fact you need to manage expectations. It's sad but at Christmas time and during other big events, managing a chronic illness becomes like managing a business. You need to be able to tell people what you can do, what outputs are realistic and how much work you can contribute. Yet even letting people know all of this in advance can't shake off the feeling of being a general let down.

Many families and friendship groups will rally around their beloved chronic illness warriors this Christmas, They'll make them feel at ease, help them out with their tasks, organise their socialising and help them do as much as possible- but not everyone has that support network.

If you're feeling isolated and alone during Christmas because your chronic illness doesn't allow you to live out the full festive pantomime- please remember a few things.

1) Christmas isn't everything and while it will return year after year, laying out exactly what you can handle rather than making yourself feel worse is a good foundation to lay. People are inherently good and you might be surprised by what a short, heartfelt explanation of your feelings to someone might achieve.

2) If you are stuck in a rut with family and friends not understanding that Christmas is a big deal in terms of symptoms for you, then maybe it is time to change that. What can you do to make them understand? If you don't feel able to face up to dealing with it now, can you spend next year trying to better educate those around you? It might not feel like it when you are feeling really down in the dumps but it's likely people do want to help and it's also likely they'd feel pretty bad if they knew what their expectations and judgement was doing to your state of mind.

3) Have you turned to a network of people who can understand? There are so many online and social networks now dedicated to not only chronic illness but even certain illnesses and some symptoms. These are fantastic, often very supportive and helpful groups who welcome in new faces, even if you are online and largely anonymous. Sometimes all it takes to lift spirits is to connect with someone who knows how you feel and can share the burden.

Christmas is supposed to be a time of coming together and appreciating loved ones and it would be amazing if those who have to deal with a chronic illness day in, day out, could experience this to the full. There is much more to be done in the chronic illness world to bring a better understanding and level of edcuation to the wider population and this is very difficult. There are so many chronic illnesses that have different and very far reaching consequences, but for those who know what it's like to feel ill more than they ever feel well, here's hoping that each Christmas can become easier and more loving.

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?

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: