Thursday, 29 October 2015

When things go wrong

L-R Where I should be this week (source Pinterest)
Where I am this week 

This week I should have been bathing in some Autumn sun and eating my body weight in pastries and gelato. However things did not go according to plan. Not long before we were due to set off for the airport I fell into the grasp of a big M.E crash. The biggest most scariest one since the very first that left me hospitalised, 5 years ago. And so rather than being laid out on a sun lounger, enjoying some beautiful sunshine I am curled up in my bed warmed by my electric heat pad. 

To say the crash came at a bad time is an under statement. However it is not as if we were ignorant to the fact that this could happen. Life with M.E is filled with cancelled plans and disappointment. You are constantly aware that things won't necessarily go to plan. I'm just lucky it's not happened before a holiday before now. I actually woke up fine and had started to get ready, however I felt very suseptible to stress and the bustle going on of pre holiday have we packed this, where is this? I felt overwhelmed by it and it caused a bit of a shake and clumsiness. I dread to think what I'd be like as part of the McCallister family. Home Alone I guess ;-). Also my noise sensitivity was high. I believe it's called misophonia, when you percieve things to be louder than they are and they cause anxiety. In hindsight these were the warning signs of what was to come. However I believe it could have been worse. Had it happened actually at the airport or on the plane, the constant noise and movement could have caused it to be even worse. I think should I have somehow come round quickly and enough to get to the airport that this could have triggered another greater crash, which probably would have seen me hospitalised. One for having to try cope with all the stimuli and stress airports bring about on top of a nervous system that had already given me a big warning. And two for not respecting that initial crash and allowing my body the rest and recovery it vitally needs after a crash. Or it could have happened before our return journey. I know some people would think yay longer holiday but it's not much of a holiday when you're practically comatose and could end up in a foreign hospital.

However much you want to fight against a crash, doing so is superfluous. As is others trying to fight against it. Although it's incredibley scary all you can do is accept it and try to remain as calm as possible. The more you panic, which is easy to do when you are scared at what is happening, the worse and more prolonged a crash can become. Therefore as much as I knew the timing was very unfortunate and wished beyond belief that it wasn't happening I had to accept that it was. To simply focus on trying to be calm and keeping myself from any more harm. After all I did not have the strength to open my eyes or talk, how was I going to face the stresses of travel? A crash is a sign too much is happening. Although it might seem to you that you've not done much to trigger it at all. But sometimes the stress is having a lot on your mind and sometimes it's your illness having been worse than usual or you've had other issues or illnesses on top of that. Often the actual triggers can be small. A certain smell or loud noise. Causing your body to believe it's under attack and go into hibernation to try protect itself.

A crash is a big deal. However I wanted to say that despite what happened and despite all the emotion surrounding it I still remain positive. My determination to keep trying is not shaken. Of course I will be careful and respect the illness because burying my head in the sand is not good. But if this year has proved anything it's that adventure can be possible and a meaningful life can still be had, which gives me hope. And despite it being disasterous, things will be learned from this experience and my achievements won't be underestimated. I said in my Strictly experience blog (the chronic illness one) that I know many people get disheartened by experiencing PEM after having fun and breaking the norm. They feel hard done by that fun comes at such a high price. However for me I don't mind so much because it means I had fun. PEM is unfortunately a symptom that comes hand in hand with having M.E. It's just what having M.E is. You know what's in store for you and you fully expect it. However PEM from doing very little, from actually resting, that is unfair and painful. This is why I am extremely grateful everytime I get to leave the house or even just to get downstairs. Because nothing is guaranteed. You live with a chronic illness after all. Yes it comes with payback that's really not pleasant but as I have said many times life is for living. If you get the chances grab them. Seek out adventure. Seek out fun. I won't underestimate the value of being able to do things or begrudge the payback it brings, especially after this experience. Having made good memories and achievements is worth far more.

A piece of advice I wanted to pass on was if you ever experience a crash before you are due to travel and need to change your plans then be sure to get medical attention. This way they can confirm that you are in no fit state to travel and can provide information for your travel insurance. Seeking medical help is probably a good idea anyway, due to the seriousness of the symptoms. Getting other things ruled out can be important, we might have M.E but that does not make us immune to other illnesses. I know medical attention will cause additional stress on the body but they'll be able to see what's going on and can provide peace of mind.

Post crash I'm in PEM hell and there's still quite a bit of emotion that needs to be comprehended. But hopefully recovery is well underway. I'm working on a blog post about crashes for carers, how they can understand what is happening and how to help. Hopefully that will be up soon, when brain power allows. For now I have linked below a previous post that explains what an M.E crash is like. 

Hope you're all having a better time.

Sian X


  1. I'm so sorry this happened :( Sending lots of love and hugs xx


  2. I experience crashes so often that I tend to go anyway and risk it. I always have to write off at least 2 days with holidays when I stay in bed. I did both times this year. My worst crash was in 2014 and it lasted around 10 months where I couldn't walk, leave the house, cook, anything and I have a young daughter to take care of. In the middle of it all I got married. There was little point in postponing as it would have cost a lot and the risk would have still been there the next time. I did manage to walk down the aisle even though my daughter was prepared to put ribbons on my chair and wheel me. My first dance was more like being held up and rocked back and forth! I had to be carried to the bathroom the next morning and I didn't walk for 10 days afterwards. My hubby definitely knows what he's in for and he said 'I do' anyway. My ex-hub left when I got ill (after 14 years!). The pain of the day well worth it though as I was so happy. We waited 4 months before our honeymoon so I could recover as much as possible. I still had to go in the wheelchair though. I'm pleased to say that for the last 9-10 months I have rarely needed the wheelchair. I'm slowly building up some muscle again. Mindfulness techniques have been invaluable throughout. Keep fighting, life is full of ups and downs for everyone, ours are just more interesting. ;-)

    1. Sorry to hear about your ex not being very understanding (an understatement) but I'm glad you have found someone that can see through all that and accepts you in sickness and in health. Yes, always a fine line between when to push and when not to. In general I go ahead and push through because I want some kind of quality of life. But as my brain was screaming at my eyes to open and my body to move, trying to fight and nothing was happening, there's little you can do but accept it. It's certainly not put me off trying to live some kind of life, when I can so that's the main thing. Like you say life is full of ups and downs and the downs are often fully expected for us. But the ups make it worthwhile.x