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.

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.

SMARD- Read Louie's story

It's Rare Disease Day next month, which I always try and do a couple of feature posts on. They are of course usually about EDS or HMS, but this time it's something different.

This post is about Louie, the smiley little boy below.

Louie is almost three years old. He is son to Natalie and Reece and very proud older brother to Charlie. He like watching Disney films, being read to, going swimming and playing on an ipad, just like most other boys his age.

As you can just about see in the photo, Louie has a tracheostomy. This is because he has a rare genetic condition called SMARD- spinal muscular atrophy with respiratory distress.

Some background on SMARD from http://www.actsma.co.uk/page/smard :

SMARD is a neuromuscular disease which causes progressive weakness of the muscles and severe respiratory distress, due to paralysis of the diaphragm, which tends to be the first noticeable symptom.  This is caused by a breakdown of the link between the brain and the muscles due to affected nerve cells.

Some signs may be present before birth, with the mother noticing less fetal movement than that of a healthy baby.   Most SMARD patients will experience respiratory failure within their first six months of life, and go on to require artificial ventilation.  Symptoms seem to appear in reverse order to that of SMA Type 1, with respiratory problems coming first, followed by severe muscle weakness, especially in the lower limbs.  

Health typically deteriorates very quickly by the age of 2, but there is such a range of severity that different cases are picked up at different ages and progression can vary greatly

 Both Louie's mum and dad carry a mutation of the SMARD gene, which only 1 in 50,000 people do. Charlie does not have the gene. The condition is progressive and life limiting and there is no cure. Louie needs round-the-clock care, and despite the demanding nature of his condition, he is happy and content.

 The condition does not affect Louie's brain, and as he grows older he is desperate to communicate with those around him, but he cannot talk. His family are currently trying to raise funds for him to have a piece of equipment called a Tobii Eyegaze . The Eyegaze is a special computer which will give Louie the ability to communicate using his eyes. If he has this computer, he can communicate with his parents and his nurses and carers, he can tell them if he is happy or sad, or uncomfortable, and he can have improved quality of life. It will also mean he can interact with Charlie as he grows up. He will also be able to tell his mum and dad what he wants to do, for example, go to the cinema, or just stay home and watch a film. Something that you wouldn't normally give a second thought to, is such a big deal for a toddler like Louie. Unfortunately there is not funding for this, so his family has to raise £6,600 in order to get the Eyegaze.

As you can imagine, this is very important to Louie and his parents. You can take a look at their fundraising page here and find out more about the campaign. You can also share this on social media and across Blogger. The more people find out about SMARD and Louie's campaign, the better.

For everyone with a rare disease or condition, Rare Disease Day is excellent and a chance to spread the word and raise awareness. The website can be found here and they are also on Twitter- @rarediseaseday