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.

What uses up your spoons the most?

This is something that for me, has only really become a problem in the last year. It hasn’t been a struggle I have dealt with since my symptoms began, like a lot of other chronic health suffers have, and I am grateful for that at least. I am more tired now than ever, but of course I am, because I now have a demanding job, work hard, have a bustling social life, a relationship and the responsibilities that come with being an adult. Add the chronic health issues into this and it is an exhausting bundle of things.

Living with chronic pain and dealing with an abundance of symptoms every day is incredible, and people who do it, no matter what the parameters of their doing it are, should be rewarded endless praise and support. Not that they need it though, spoonies know they have to live their life, we don’t ask for a medal on a daily basis, we just get on with it.

*Just in case anyone reading is this unaware (like I was until about a year ago) spoonie is a term used to describe people with chronic illness. The idea behind it being that we have a certain number of spoons each day, and these get taken up by various activities until they run out. Once they do run out, essentially the person has little left in the way of energy and tolerance.*

So this is, for me, and I would be interested to hear what others find, the list of things that use the most spoons.

-           Showering

-          Fitting in exercise

-          Commuting home from work

-          Cooking dinner

-          Going out after work

-          Chores (especially hovering, washing and changing bed sheets)

-          Engaging in long conversations, particularly those at work

-          Drying hair

-          Reading (weird, but it exhausts me!)

-          Getting ready for a day/night (hair, clothes, make up etc)

-          Shopping (food or clothes)

My list is getting longer and sometimes I sub things in and out. Showering seems to take up so much energy and the thought of it just makes me want to bury myself in my duvet. I know it is a very popular one among those who are trying to preserve spoons, and to the outside world probably sounds bizarre.

What uses up most of your spoons? 

8 signs you are living the chronic life

Being chronically ill, as I have written so many times on this blog, is a way of life. What it isn't though, is your whole life. I think most people who suffer with such conditions know that there is a lot of importance in making sure you don't let health problems consume you. I try to make sure mine don't but taking a light hearted approach where possible.

Don't get me wrong though, there are still days I want to scream. But anyway, here's something a bit light hearted to go with the chronic life hashtag I've been enjoying keeping tabs on lately.

1) You often find yourself wondering if you are on fire because yet again, you've slapped on too much Deep Heat and certain parts of your body feel like naked flames.

2) You can often be found blankly staring at people mid-conversation and struggling to remember where/who you are due to chronic fatigue. Great if you want certain people to not speak to you again, not so ideal if you're in a board meeting have 12 people staring at you.

3) You have four meals a day. Breakfast, lunch, dinner and meds.

4) You are tired. Tired is you. You are one.

5) You have been in the shower and started wondering if you could live a full life if you never got out. Getting in was effort enough, Getting out doesn't seem plausible.

6) You really enjoy small victories like taking off your bra with one swift movement because you can bend in unnatural ways. YAY HYPERMOBILE JOINTS.

7) You haven't had a good nights sleep since the 90s.

8) You have a super power where you can always be more tired than everyone else.

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:

The power of the online community in healthcare

So everyone knows and has been told a hundred times over to never Google your symptoms. Don't go online and try and work out what's wrong with you, it'll probably be wrong and misled. But what about when you can't get the support you need from doctors or clinics? This is the issue that faces thousands, probably realistically millions, of people worldwide with chronic and rare diseases and conditions. 

The internet, particularly social media, is now an integral part of most people's daily lives. We share and post all sorts, from our breakfast to our emotions. Those people who have symptoms that don't add up, or know they suffer from conditions that aren't adequately cared for by medical professionals are making waves online. I first found this when I was diagnosed with hypermobility syndrome. I didn't get a great deal of support or much useful advice and was soon discharged from all clinics, despite the issue not being under control. My symptoms then got worse and more started slowly appearing and I realised I most likely had another condition, which doctors agreed with but again, not enough support. 

My story is not unusual, and I ended up turning to online forums, Facebook groups and Twitter feeds for answers. I found charities online that had growing followings on social media and plenty of people willing to share experiences. I've learnt so much from these groups and websites and found ways to handle my condition that have helped. That was also how this blog was born. I wanted to put my journalism and communications degree to good use for something that mattered to me. Since then I have built up my own online community. This blog now has a Twitter feed: @ChronicHealth1, I have lots of followers who share my condition online and I use Facebook groups and forums to read about research studies and learn about the ways other people handle flare ups. 

Of course, the internet can be a dangerous place for an unwell person to frequent. Things spiral quickly and patients end up fearing the worse. I've done it myself plenty of times and always regretted it. If you are using online resources to handle a condition or find out what might be wrong, start by looking up reputable charities or societies and see if they are on social media. Also consult your GP if you strongly suspect something, don't just decide that you definitely have it and start trying to come up with treatments. It's really not worth it. However these online communities for diagnosed conditions are so helpful and valuable and many people rely on them as a source of emotional support. I see so many comforting stories and useful links posted on my Twitter feed everyday that I share and sometimes apply to me. 

There's a reason online community management is growing as a job in healthcare. These resources are important and powerful and when used properly, monitored and maintained they can be of great use. 

Anyone reading this with hypermobility, EDS, fibro or other related conditons, check out @ehlersdanlosuk and @HMSAcharity on Twitter, or look into the hastag #spoonie. Type your condition into the Facebook search bar and you will most likely find a group to join. 

Support can come in all shapes and sizes and in 2015, that can include your laptop or smartphone. Just try and be sensible.