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.

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.

Rare Disease Day- The continuing story of Annabelle and Vascular Ehlers Danlos syndrome

I wrote about little Annabelle for rare disease day last year, and as much as there are lots of things I could I have opted for this year, I wanted to do another post. I have followed her story online for a few years now after coming across a twitter account her parents run. There have been a few stories in the media similar to Annabelle's (known as AJ or Bella) but overall, as VEDS is a rare disease, coverage is rare too. 

Her wonderful family set up a registered charity in her name, and now raise awareness through social media, events, their website, fundraising and media coverage in their local area. On Rare disease day this year they are launching a new website. 

Stories like AJ's and the work that charities like AJ'S Challenge do are so important in the rare disease community. Having just turned 6, this little lady is juggling both her conditions and being a normal child, and this is the case for many children with rare but serious conditions world wide. 

Here's a little more info about AJ and the charity: 

Annabelle's Challenge is a UK registered charity raising awareness of Vascular Ehlers-Danlos Syndrome (vascular EDS) to both the general public and medical profession to help aid an early diagnosis and prevent misdiagnosis of vascular EDS and to support patients who are affected by the condition.

The aim of Annabelle's Challenge is to raise awareness, support patients and families affected by vascular EDS and to encourage the medical profession to progress further with research into finding a cure.

At just 3 years of age Annabelle was diagnosed in December 2012 with Vascular EDS, it is a life threatening and incurable genetic condition and is the most serious variation of EDS, weakening the collagen in her tissues of the body and making her prone to possible arterial or organ rupture.

A torn artery can cause internal bleeding, stroke, or shock, and is the most common cause of death in patients with this disorder. Although serious problems are rare in childhood, more than 80% of vascular EDS sufferers experience severe complications by the age of 40.

Annabelle also suffers from rare blood disorder von Willebrands, with most children an accidental knock might only leave a slight mark but for Annabelle she comes off much worse with either excessive bleeding, deep bruising or even open trauma wounds requiring medical attention.

Her blood does not clot very easily and when factoring in the vascular EDS we have to watch her every move, not easy for anyone with a six year old that just wants to lead a normal life like any other child of her age.

So far this year Annabelle is doing great but we can’t ignore the fact she is a ticking time bomb, at any time day or night she could suffer from a spontaneous and ‘significant’ event which could end up in a visit to A&E or sadly worse case it could prove to be fatal without any warning.

To help raise awareness of the condition around Rare Disease Day, Annabelle has recently taken to the field with her local football club Bury FC as their mascot. During the match day visit Annabelle met with the manager and players and raised awareness of Vascular EDS before proudly walking onto the pitch with the players in front of the crowd.

Please do check out the new website http://www.annabelleschallenge.org/ and find out more about Ehlers Danlos and the challenges faced by parents of children with rare disease. Events like Rare Disease Day give patients, families, friends and doctors a chance to have a voice and make changes, so please share this in the hope it can help another parent, person, child, friend or doctor put together a puzzle. 

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.