Taking Chances

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Over the next two months things are about to get hectic. Admittedly things already feel hectic and that's from just trying to haul my ass through the pain of each day and make it out alive. On top of that I've been trying to change up my room. Hey I need a change of scene. I bought new furniture way back in January and only in recent weeks has it made it's way to my room. Trying to go through everything and throw away all those bills from 2010, and socks that are sadly not going to be reunited with their sole mate (see what I did there) has been arduous. It's frustrating wanting to get things organized, especially when you are surrounded by piles of stuff that has no place until you can put the new furniture in. And all that clutter is somehow oppresive and has it's own kind of noise that creates so much discord. I just want to get it done! However of course it's not that easy. I need to pace it. Doing too much on one day leaves me unable to do much apart from stare at all the stuff yet to be sorted for the next few days.

However this needs to be put on hold a little longer as things outside of the bedroom are about to get busy. Although ironically during most of that time I will actually be confined to my room a great deal more to be able to reserve as much energy as possible to cope with these events. In the next 6 weeks I have 2 big events going to watch Strictly Come Dancing and a holiday to Portugal. And after that it's my birthday. I feel a little overwhelmed but at the same time incredibley grateful. I know it's not going to be easy. I know things could go glitterballs up. I know it's going to take every little scrap of energy and I know it's going to give me horrendous post exertion malaise, making me very unwell. You should have seen me the day after getting the news I had Strictly tickets, fighting for breath and feeling like I had been ran over by the Strictly Express. I also know that maybe it's not the best thing to do in order to preserve my health and to try and avoid further setbacks. But I have said it before and I'll say it again life is still for living. Each opportunity is a gift. A chance to have something more than a closed off world of drawn curtains, high pain levels and mobility aids. Where all you see in a week is 2 or 3 people and generally that's just to give you some kind of assistance.

 More than ever lately I have felt the heartache of how small my world has become. How separate I feel from the real world, the world just behind my closed blinds or just downstairs. I spend so much time listening to all that's going on and not being able to be a part of it. Yet my resolve to try and make this life as good as it can possibly be for myself is at the most determined it's ever been. And that's saying something. I've been of the opinion that it's our own responsibility to create our own happiness and give ourselves chances for a long time. Possibly because I've spent more than half my life now with one chronic illness or another. Or perhaps as I have previously suffered from depression, anxiety and self harm and told myself countless hideous untruths about how worthless I was and that there was no point being alive. Maybe that has given me a greater perspective as well as a healthy respect for my mental health.

People say wow you're lucky and I'm not sure how much I'd agree with that. Yes I have a horse shoe in my room and a four leaf clover in my purse but I don't feel lucky. I'd rather my luck granted me good health and more independance, the ability to work and be more social. These opportunities have only come about though because I applied or booked. I put myself in the frame to have these chances. And chances is the right word, because they are big chances. I'm taking a gamble and hoping that on the day I can get out of bed. There's a high possibilty I won't be able to. That they'll go the way of many other failed attempts and literally all end in tears. Many will say I'm setting myself up to fail. I see it as setting myself up to try. And being a tryer is one quality I will always admire in myself.

Like I said I know there is a high chance things could not work out. I have a full understanding of the reality of the situation. There are many precautions and stratergies that go into any opportunity. Planning to the nth degree to make things possible. And like I said I am fully aware of the reality that things might not work out, despite everything being carefully planned out. As well as the effect such mamouth efforts will have on my health. You can read more about how I manage to leave the house from time to time and the effects it will have in my blopost let me put this in a way you might understand, which I have linked below.

Living with a chronic illness and knowing there's no cure or effective treatment I think you become even more aware of how unpredictable life can be. You feel that most of your adventures are probably behind you. That your life will never resemble that of the average human being again, or what we perceive to be average/ normal. It's a mental health disaster zone in many ways. But the human spirit can be a powerful thing. Somehow you find the strength to get through each pain filled day, somehow you adapt and find ways to cope. Yes, you cry and you curse and ask why this happened to you but somehow you find grit and determination to tackle each obstacle that is thrown at you. It's amazing. I have the upmost respect and admire everyone that gets through each day with a smile on their face and hope in their hearts. Hope is so important. And I think that by giving myself these opportunities it is a way of retaining that hope for me. I have to find some kind of life in this half life existence. I can't have the every day freedom and pop to the shops when I want. Nor work in my dream job as I trained to do. To leave the house at all it's in a wheelchair and with a family member. I'm the woman still going on holiday with her parents, which I didn't expect to be doing at this age, nor does society expect it. However it's the way things need to be to at least make travel somehow possible. To quite literally broaden my horizons. I can try and go after the extraordinary every now and again. As the saying goes "Shoot for the moon, even if you miss, you'll end up amongst the stars."

Sian X

Related  posts:

Let me put this in a way you might understand explaining how mitochondria work and how being able to leave the house on occasion doesn't mean we're better.

Holiday Get ready with me how I prepare myself to go on holiday, step by step from 6 weeks before to leaving for the airport.

Forget the boom and bust? Another post on taking chances and making the most of opportunities if we are able.

The Memory Jar A way of documenting all the special little moments and trying to seek out the good, despite the often bleak existence of chronic illness.

  

Let's talk about me

Hi everyone,

First of all I want to say a very big thank you for the amazing response to my last blogpost Let me put this in a way you might understand. I am so humbled that so many people read it and for the lovely comments I recieved. Thank you to anyone that shared it, inparticular those that shared it with family and friends in the hope that they may understand what it's like living with M.E or chronic fatigue as a symptom. I really hope that it helped.

It's been a little while since I've actually done more of a chatty post and actually discussed how I'm getting on lately, so I thought I'd take the opportunity to do so now that I have quite a bit to say. You know what it's like, living with a chronic illness you spend most of your time feeling like you are just going through the motions, trying to keep your head above water and get through it. Admitedly I have been doing my fair share of this for a good while now. However it got to the stage a couple of months back when I thought stop! I'm actually tired of feeling so helpless and hopeless. I think some of this feeling was bought about during May and M.E awareness month, because it becomes even more of a focus and you see so many posts and tweets. In no way is that a bad thing, I commend everyone that really made the effort and put what the could into raising awareness. However as a sufferer there's only so many of those posts you can read and not be reminded that we have it tough, and not many people out there are offering us any hope. Which then leads on to thoughts of how crazy and neglectful that is, when there are hundreds of thousands of people who are incredibley unwell. It makes me sad and it makes me angry. Anyhow, these feelings made me think "am I actually putting up with this a little too much?" Let's face it if anyone else felt half as bad as we do for only a day they would probably go straight to the doctor or hospital. Yet because we know we have M.E, we automatically put up with it and think well it's just the old M.E. We're just so used to feeling horrendous and being told that there's not much that can be done for us. I think this can be dangerous sometimes, especially if we develop new symptoms, because we're not immune to other illnesses and conditions either. We shouldn't always put things down to the old M.E and neither should our doctors for that matter.

So I decided to make an appointment with my gp and talk a bit about how neglected I feel. Not neglected by them as a gp practice but because I feel so left out in the wilderness due to the lack of help there is for us in general. It really baffles me how so many people can just be left to suffer and nothing is done about it. It felt good to get things off my chest. My gp decided to run an armful of blood tests, to check how everything was. Or you know whether they still say you're a picture of health (eye roll), which of course they did. My folic acid was a little low which could have affected my fatigue level a bit, so I did have a course of that for a month to help boost my levels back up.

I took the opportunity to share some of the research that I've been reading about online. Inparticular the one about changes in the white and grey matter in the brains of M.E patients. If you would like to read more about this click here. This was one I resonated with, because a few months before I was diagnosed I needed to have an MRI scan because my prolactin hormones went a bit crazy due to some medication and anxiety. However when they did the test they found what they described as lesions and abnormal changes in my white matter for someone of my age. The neurologist I saw was a bit baffled as to why this had ocurred and why I was not having any physical symptoms. Apparently the findings were conclusive with mini strokes. However with my health seeming to be ok, other than my anxiety, we simply decided to change my medication and to monitor any physical symptoms should they arise. I did get retested shortly after my M.E diagnosis and things seemed to have stabilised. However when I read about this research it did make me think about this time and whether this was some kind of precursor for things to come. This combined with an increase in muscle switches lately encouraged my gp to write again to this neurologist to investigate further and find out whether there could be a connection. Who knows when that appointment will be though? I've not heard anything so far. Plus I'm not holding out too much hope for it seen as we're used to things not being that simple. But you never know.

Recently I read a blogpost by Jess at Why is life so lush all about how she had got her mitochondria tested through a blood test. You can read that post here. This blood test is not available on the NHS but is one of the tests offered by Dr Myhill. Jess wrote about how she had had the blood test and sent it off to their laboratory to be tested. Dr Myhill then analysed the results and sent the findings along with suggestions of future treatments that she recommended based on the results, to her gp. I've been reading a lot about mitochondria lately and I think it offers a real explanation as to why we feel as we do and how post exertion malaise is our enemy. Therefore I think getting this blood test would help in a way to have more tangiable proof that something is wrong not just feeling terrible and a whole heap of symptoms. Although part of me does think that mine will come back and tell me nothings wrong, just to bite me on the bum. I showed this to my gp and discussed it with him as I wanted to have his cooperation on it too. To be sure that he would take on board the results and suggestions and help me to implement them. This is not something he'd heard of, however he was keen for me to give it a go if it meant having answers and that he was made aware of things to try going forward. I think having your gp's cooperation on this is important as they are the ones that will recieve the information and who can hopefully help you afterwards. I'm sure some would disagree with it but luckily mine was willing to help. Unfortunately as it's not available on tbe NHS it's quite expensive, so I've waited a little while till I can afford it. Saving up for a blood test is definitely a new one. However in that time the site has gone a bit crazy and had a big influx of patients, meaning they've had to put a holt on any non direct patients for the time being. They reckon this is possibly the result of her new book Mitochondria not Hypochondria. So that was a bit annoying. In the mean time I've ordered the book in the hope that it holds some answers too. I'll be keeping an eye on the website for when blood tests can be reordered.

So that's pretty much where I'm up to lately. Trying to get by but at the same time being so fed up of just getting by. I need to try to stay as positive as I can but at the same time I recognise that getting upset and angry is ok. It doesn't mean I'm hurtling down that depression spiral. It just means I'm acknowledging that things aren't lollipops and rainbows and is it any wonder? It's healthy to acknowledge these feelings and let them out. I think it's a miracle how we're not breaking down more, with all we have to go through. Hopefully soon I'll be back to my chipper self.

I have a few other things I'm looking into to help me regain some control of my life and illness but I'll save them for another day when I'm a bit further down the line.

I hope everyone else is doing as well as possible.

Sian X

Let me put this in a way you might understand

Let me put this in a way that you might understand a little better, what it's like to have M.E. I know at times it can be confusing or not what you'd expect. However, this is most probably because of a pre conceived perception of what you may think living with a chronic illness is and the sometimes conflicting things you might see on social media. No one's social media account represents them completely or documents everything, and the same is true of course of those with a chronic illness. On social media I tend to only post about the happier things that happen. My profiles and feeds (as well as those of many others with a chronic illness) may look like a highlight reel. The things that I've been lucky enough to be able to manage to do. Except of course during April and May when I go into campaign mode to raise awareness. I can well understand that onlookers will see some of the posts and think "well things are probably not that bad then." "She managed to go on holiday." Sadly they may even think I'm overreacting or worse that I'm faking. It can be a little like when someone pulls a sickie from work then post on social media that they've been on a massive bender. Before I post things I often wonder " what will people say/think if I post this? Should I even post it at all?" I know many people in the same boat that are so careful with what they post because they fear the backlash of nasty comments. How it may look as though we pick and choose the days we are ill or better. Or that old chestnut "funny how you can't work but you can go out."  It's true, we do have days that are better than others and days that are wore than others, but there's very little say in how we influence them. I'd like to think that those that knew me before I became ill, which is probably the biggest percentage of my Facebook friends, would know that these statements do not match my personality. However I understand most will be confused. I am confused a lot of the time too!

Anyway, in order for me to do the things I post about, such as going out for dinner, shopping, to the very big deal of going on holiday a lot goes in to trying to make that happen. Like I said there's not much influence we can have on the outcome but there are things we can try. In this modern age most of us won't leave the house without first charging our phone battery to make sure it works when we need it throughout the day. For someone with M.E to attempt being social or to attempt something around the house the same kind of thing needs to apply. We need to 'charge' ourselves up. Sadly, we can't just plug ourselves in. Put basically, for someone with M.E charging up means doing nothing, resting, and by nothing I mean nothing; limiting our activity even more to try and reserve energy and store it up to be used to get us through the event. In chronic illness circles we call this saving spoons. For more info on why we use the spoons analogy read my blogpost on the spoon theory.

 So if we know we have something coming up, a doctor's appointment (see not always fun stuff) or people coming round, the days before or sometimes even a week or more (depending on severity and the type of event) we need to try our best to conserve our energy to at least have a chance.

source: Pinterest

However we are never going to have 100% charge, in comparison to our old selves or a healthy person. Using the functional ability scale by The Association for Young People with ME currently I am actually around 30%. And that is at best! Those times you might see me out of the house, I am functioning at a maximum 30% (it's probably less especially by the time I've got ready and left the house) of a healthy 'normal' person. You can learn more about the functional ability scale here, http://www.ayme.org.uk/functional-ability-scale

This is because people with M.E aren't able to produce energy properly. The mitochondria in our cells, which is the bit that creates energy, is faulty and therefore cannot produce energy as it should. So imagine going to charge your phone and the maximum you can get is 30% of your battery life and that amount of charge has to last you a few days, a week or sometimes more. You'd be demanding a refund or a new one right? If only the same could be done with unhealthy bodies! Therefore even by resting before hand it doesn't mean we're fully fit and healthy when we leave the house and that we have a full battery to use.

 Also because we only have that limited power everything takes so much more effort. Talking for longer than usual may make you out of breath. Getting up the stairs might require a few stops along the way. Adversely the more effort we're using the more charge we're eating up. This is why mobility aids and other equipment are in some respects our saviours as they allow us to do things by minimising the effort it would require without them and use up less of that precious energy. This is also why you may be confused if sometimes you see us standing or walking and others we're in a wheelchair. We might be able to walk a little but not very far and it will exhaust us a lot quicker. Therefore wheelchairs and mobility aids allow us to hopefully do a little bit more. It's also important to know that that 30% charge has to last us throughout the event and even longer. Obviously the event is going to take up the majority of that energy and leave you with just the dregs, which is all you will have to run off for the days/ week/ weeks following.

Unfortunately because of the fault in our mitochondria we can't just eat something or have a quick nap, or a good nights sleep to restore us like a healthy person would. They may work fractionally but nowhere near as effective as they should be, due to the mitochondria not absorbing nutrition as effectively and turning it into energy. As well as because our sleep is rarely refreshing. You only start to slowly regain some quality of living as your body has the amount of quality rest, recovery and sleep it needs to recharge sufficiently.

Source: Pinterest

This is the part you won't often see because we're cooped up, house bound, bed bound, looking slobby in our pj's. Not only do our bodies not produce energy properly but M.E is characterised in particular by a symptom called post exertion malaise (PEM), which is pretty much as it says, although malaise might be too mild a word sometimes. Therefore as soon as you exert yourself (and exert refers to simply moving, talking or thinking,) you are then going to feel more ill as a result. Bummer huh?! So the bigger the exertion, such as a trip to the shops, the more drained of energy you will be and as a consequence of such a large amount of exertion you can feel extremely ill. Although because any activity is exertion sometimes the post exertion malaise can be just as bad after smaller activities. For example to get down the stairs might use up less energy and be a task we can manage on a day when we know our energy level isn't at it's best. However say our energy level is at 10% by going downstairs that energy quickly gets eaten up, leaving you at the very dregs again and feeling potentially just as bad as a bigger event. Just last night I asked for help to come down the stairs as I was getting sick of the sight of my bedroom, only to need putting back to bed 20 minutes later because I was so exhausted and feeling like jelly after the exertion of coming down the stairs. Nice kick in the teeth there !

Many people call this payback. I sometimes refer to it as a side effect from life. I don't get many side effects from tablets but I sure do after doing things. PEM feels like being ran over by a bus or walking straight into a brick wall. It hurts! And this can last for weeks. I guess the closest thing I can compare this experience with that is more relatable is that of having a hangover, but one without the alcohol and lasts for weeks. It feels like punishment. A from Pretty Little Liars has nothing on PEM (Who the hell are you?). Symptoms vary but can include extreme fatigue, exhaustion, muscle aches, muscle twitches, tachycardia, palpitations, breathing difficulties, cognitive problems, sore throat, unable to talk. See my post on what an M.E crash is like for a bit more insight on what we might experience, which you can read here .

However this 'charging up' to be able to do things doesn't always go to plan. Quite often life will get in the way, throw you some "drama" that you need to deal with that will use up that saved up energy and use it up quickly because you are stressing about it. Ironically one instance of mine where this happened was a faulty phone charger. Life can constantly throw things your way that you have to deal with in the moment as best you can, with what you can. A sick relative, an unexpected bill, something breaking, a cold or stomach bug. We're not immune to life's dramas. But all that stress and using up a lot of physical, emotional and cognitive energy is going to lead to some quite nasty post exertion malaise. But what can you do? You can't stop them. Then there are times you can be as 'behaved' as possible before an event and have no dramas beforehand but when the day comes you still don't have the energy and feel too ill to do it. Like I said, we don't get much of a say, no matter how much we try. We're chronically ill after all. Sometimes the energy you use up just to get dressed and ready can leave you too exhausted to actually go anywhere, except back to bed. It's happened so many times. You feel like Cinderella all dressed up with no where to go. That stings to be honest. To know you have given yourself the best possible chance and still it's not enough. But simply being ill uses up a lot of our energy, because our bodies are in a constant state of high alert. Pain is exhausting. Our nerves can be extremely sensitive. Being ill is exhausting and relentless; you're constantly reminded in some way or other that you're sick. So even though you may think "this is so unfair, I've done nothing" it's your illness that has been draining you of that energy.

So to sum up, if you ever see someone you know (or don't know) that has a chronic illness post about going out etc, know that this is certainly a rare occurrence. That they have probably posted about it as they are so made up to have been able to do something relatively normal. To escape the confines of their room or house. But know that this hasn't been easy to do and that there will be consequences as a result. Feeling extremely unwell, barely able to move, just because you did something as seemingly simple as a doctors visit or a meal out. There are times when we think is this little bit of normality even worth it for all the suffering that will follow? However these moments are important for our well being. To break the cabin fever. Because being predominantly bed bound and house bound is hard emotionally, and can be lonely.  I understand it can be confusing but just remember these moments are the exception not the rule. Little moments of trying to grin and bear it amongst the harsh realities.

I hope this has clarified things some what and put them in a way that is a bit simpler to understand. If you still have questions though please do ask. I'd rather answer questions from someone trying to understand than someone passing judgement without trying to understand.

Thanks for reading

Sian X

Oi, it's time to listen!

Well what a week it was last week (or the week before now)! For those that don't know the 11th - 17th of May was M.E awareness week. A week that saw a patient group use up all their feelings of anger, neglect, injustice as well as their hope for a better and healthier future to raise as much awareness of this dreadful illness as they possibly could. And boy what a fight we put up! As a patient group we know that there are very few people on our side, thanks to decades of misrepresentation in the media and a lack of interest by the medical world. How can it be that an illness that in it's severest form can leave patients extremely disabled and dependent or even fatal gets so little recognition? That millions of sufferers are just left to suffer. Therefore when it comes to awareness week those of us that can, put as much effort as we possibly can into raising awareness and fighting for our cause. So in celebration of all this awareness I wanted to write a post with an overview of some of the campaigns, awareness videos and blogs that played a huge role in getting this illness more awareness during awareness week.

 

The Princesses and M.E/ Team Princess

 

Obviously I'm a little biased about this one, because in case you didn't know it's one I organize, supported by a great team of princesses that all want to do their best for the cause. After the success of last years event, Team Princess were back this year. Raising awareness by dressing up as Princesses and posting our photos  across social media. We also held an auction on May 12th. You can learn more about the event by reading my blog post, here. This year we raised funds for every registered M.E charity in the UK and one in Australia, something we feel proud to have achieved. Our current total is just shy of £6000. You can see more on our Facebook page.

 

1 weekend 2 perceptions

 

Here on my blog myself and my friend Ali from All about M.E, wrote colab blog posts about our recent meet up. Both documenting how we experienced the weekend and how much of an effect it had on our symptoms. We wanted to show how M.E can vary from patient to patient and the different triggers that we have. Obviously us being well enough to meet up at all means we're having a 'good' day but from reading about what our bodies and minds are experiencing during this time, you'll soon learn that good really doesn't mean symptom free. You can read my post here and Ali's here. These posts were also a part of Sally's May 12th blog bomb.

 

Sally Just ME's #May12thblogbomb

 

This is a campaign for bloggers to unite and bomb social media with M.E awareness related blog posts. Bloggers write their awareness posts to be published on May 12th, M.E awareness day, and Sally brings them all together on her blog and by sharing across social media. This is the second year of the event and again the response was fantastic from bloggers wanting to share their stories in the name of awareness. Also it's a great way to discover new blogs to read and perhaps develop further friendships. You can see an inventory of all the posts that were a part of the blog bomb here.

 

Laura and Michael's blogathon

 

Staying on the blog theme Laura and Michael of lauramichaelandme.blogspot.com are blogging every day throughout awareness month. This is a big undertaking as one blog post alone can take weeks and a lot of effort to write. I'm really glad they are getting a great response. They are also raising money through justgiving for Invest in ME, which you can donate to here. They are also celebrating 2 years of blogging. Read all their posts here.

 

Meg Says and Hayley- Eszti's M.E awareness video

 

Meg and Hayley are two sufferers that try as much as they can to advocate for M.E and to speak out on behalf of those that are simply too ill to raise awareness themselves. Youtube is fast becoming a great new way for sufferers to raise awareness and to educate a whole different audience of people that may never have heard of the illness before. Or if they have then they might only have heard the negative things. Meg has a beauty/ lifestyle youtube channel called Meg Says and I believe that in putting an awareness video on this channel allows her and Hayley to really target those who know nothing about the illness and bring it to their attention. I think one of the scariest things when you are first diagnosed is not having known about it in the first place. The more the illness can be talked about and bought to a wider audience the better.   You can watch the video here.

 

M.E awareness video by Leanne, Holly, Natalie, Bridget and Holly Michelle

 

Another chatty style awareness video made by 5 sufferers talking about the real side of M.E. What it's really like. What it means to have M.E and what that feels like. As well as an overview of how it's diagnosed, a list of symptoms and the few treatments that are currently available. There's also a section on the things people say to M.E sufferers born out of the widespread ignorance about this illness. I particularly liked how they ended the video by saying " I have M.E but M.E doesn't have me" and how they were now stronger and braver than ever for all that they are facing. Go ladies! That's so true. We are warriors. You can watch the video here.

 

#NowyouseeME

 

This was a social media campaign by The Association for young people with ME. It involved posting selfies along with #nowyouseeME to show the faces of M.E and to help make M.E more visable because all too often M.E is only seen behind closed doors. Given we are too sick to open those doors the majority of the time. This could be a good or a bad day selfie. You can also donate to them by texting AYME01 and the amount (£1, £3, £5 etc) to 70070.

 

Blue Sunday

 

Oh Blue Sunday, one of my favourite things about awareness week. Why? Simply because it involves cake. Blue Sunday was founded by my dear friend Anna who writes the blog Me, myself and I and has just celebrated it's 3rd year. Anna wanted to hold a tea party to help raise awareness and to fundraise for the ME Association, however she was aware that by doing so she could be alienating her friends that also suffer with M.E as they would be unable to attend. This is when Anna had the idea of a virtual tea party. Where she could document the events from her tea party but also ask people from all over the world to join in by simply enjoying a drink and a tasty treat, from the comfort of their own homes/beds and posting a photo to social media using #bluesunday. Again uniting sufferers and breaking down the isolation this illness often brings. Those that wished to could also contribute a donation of what they would usually pay for a drink and cake at a coffee morning or cafe to her justgiving page, which you can view here.

 

Please note that these are just a few of many campaigns. Many people have done sponsored walks, rides, cake sales and dyed their hair blue all in the name of awareness and charity. Of course all this awareness is incredible for our cause but it being so prominent has of course hurt too. Being reminded more than ever of the horrors of this illness and how betrayed we feel. Then of course there's the post exertional malaise that is racking the bodies of those that have campaigned. However it certainly has not all been in vain. Thanks to everyone that campaigned in any way they could, even if it was simply by sharing an article or retweeting a link, more people now know the truth about this illness. An incredible amount of money was raised for M.E charities to help them to continue to offer the vital support they give sufferers. A propotion of the money raised will also go towards research, on trials to discover biomedical evidence that will give us much needed answers, an idea of what treatments will be effective and one day hopefully a cure.

 

A big huge thank you to everyone that campaigned and supported a campaign.

 

Sian

X

What an M.E crash is like

Lately I have been doing it tough health wise. Or should I say tougher than usual. So I thought it would be a good time to write about crashes and flares. Although due to the flare it's taken me a good while to write.

You may have heard many sufferers talk about having a crash. Now to most people, myself included, that conjures images of them having been involved in a road traffic accident. But what is actually meant by the term is a sometimes literal crash to the ground of their health, energy, concentration. It can often signal the onset of M.E if you are previously undiagnosed and can be known as a trauma. This is what happened in my case, which you can read more about here. Other traumas include infections, accidents and bereavement. Something that will stop you in your tracks and knock you off course.

Once you have M.E, crashes can happen frequently. They can be triggered by an overload of activity or what our brains perceive as such. Many of us aren't physically overloading ourselves (by which I mean often next to nothing and the most active thing being going downstairs) however there seems to be a fault in our nervous systems that tell our bodies there's too much going on and they need to shut down in order to cope. As well as chemical changes such as adrenalin levels. Crashes can also occur from an overload of emotion or too much activity going on around you. For me personally my biggest trigger is loud music, in particular really bassy music. You know the stuff with the really thumpy bass. It makes my whole body reverberate and feel like I'm being thumped, and torn apart, which causes agonising muscle pain and the feeling I'm going to pass out and a crash can come on in a matter of minutes.

Often there are warning signs but they never really prepare you for them. Because when your body decides to crash, that's it going into hibernation. Much like a computer that's been on all day with lots of tabs and programmes open. Chronic illness and M.E in particular is a constant series on peaks and troughs that can vary a lot. A crash is when you find yourself at the bottom of one of those troughs. 

Now let me just point out I'm not talking about organs shutting off or failing, and in need of a crash team and defibrillator it's not that dire. What I'm referring to is a power cut of sorts and while it's not critical it can be dangerous, especially when it comes to when and where it happens and it's often very frightening.

A sudden crash can come on without much warning. It may also lead to a flare, where you will experience high levels of symptoms for days or even weeks. Or worse still a relapse, where you struggle to improve for a prolonged period of time. So what happens? For me, I can experience anxiety type symptoms as though I'm about to have a panic attack. My body becomes tense and I can be feeling somehow overwhelmed, like something bad is about to happen. This is the fight or flight mechanism kicking in. When our bodies and brains perceive they're under threat this kicks in to help us get away from any danger. You can often be mistaken for being drunk, because you become very unsteady and start to slur your words. Often drifting in and out of consciousness. My eyes struggle to focus and blinking becomes rapid. Then I start to feel very heavy like I'm being pulled down. And the brain starts to shut off. You close in on yourself. Almost like when you are having an anaesthetic and the anaesthetist asks you to count down. It's not as controlled as falling asleep nor is it the same as being asleep as you still have some perception of what is going on around you. Hearing etc. In fact sleeping at that time can be difficult because of the adrenalin in your body. It is more a matter of different states of consciousness. However, you can literally feel yourself shutting down. It's very scary.

 Your eyes can either be open or closed. However, it's like the lights are on but no ones home. Usually they'll be closed but you may be able to open them up after a while, all depending. As I said my first crash I couldn't open them for 3 days. If your eyes are open then everything is blurry. Regardless whether your eyes are open or shut being able to communicate is difficult. Your ability to speak is lost and it can take a lot of effort to mouth or whisper words. 

Now you'd think that at times like this some of your other systems would shut down. Like your bladder and your thirst. Which as you can imagine when you're feeling completely shut down and unable to communicate well is hard. With your bladder it's again because of the fight or flight instinct, your body wants to lighten itself in case you need to flee. Gee thanks  primeval get me away from woolly mammoth instinct. 

Luckily the other day as I felt myself starting to crash I had made sure I had my phone literally at hand and put it so that when the screen was unlocked it was on my messages. It did take a while to get to that stage to be able to unlock my phone however. And I was only able to press a random letter and send. The problem was that my family thought that I was actually fast asleep. So although they were getting messages they thought I was leaning on my phone. So other people knowing the difference can be a big issue. 

Thankfully they soon realised I needed help. I could only mouth what I wanted. Luckily I have a commode, so as I was downstairs and very weak it was very handy. Of course I needed a lot of help just to sit up and up on to it. I was extremely weak and floppy. Another issue is of course you can be desperate for a wee but don't have the muscle capacity to do it. That's how you know you're weak.

Below I've listed some things that you and your 'carers' can do to help and keep you safe.

Things you can do:

Try not to panic. This will drain you even quicker. Take deep breaths and reassure yourself.

As soon as you start to feel a crash coming on. Get yourself to safety and comfort. Lie down on your bed or a sofa 

Avoid walking too far incase you fall and avoid the stairs. Try to avoid lying on the floor if you can. One because it's cold and uncomfortable and two because it's going to be hard enough to get up as it is.

Have your phone close by. As close to hand as possible. And like I said above ifyou have it set up on phone or messages. 

Maybe set up a sign system with your 'carers' so you can effectively communicate what you want. Or cards with yes and no on them. Obviously develop this on a good day

Also make sure your 'carer' knows your triggers 

If you are out and about, particularly if you are on your own, carry a medical identification card. You could make one yourself, providing information of your condition and what others can do if they find you. Providing contact numbers can also be useful

Stay put for as long as you need too. Do not get up or move until you feel strong enough and only do so with help

The next day spend it resting and doing as little as possible and for as long as it takes for you to regain your strength. Remember this could take weeks, and your post exertional malaise will be even more significant. You may also find that you sleep more

If your relapse is prolonged or more severe seek medical help

Make use of youtube, iplayer, Netflix etc if you can tolerate it, as it's a way to keep occupied but not having to hold up a book etc, which can be painful

Things others can do for you:

Put communication devise by them, if they don't already have it

Stay close

Know the likely triggers of their crash and do what you can to stop it. Example, loud music- put ear defenders on them (if they can tolerate it) or relaxing meditation music can help cancel it out. Try and get whoever is playing the music to turn it down or off

Try to eliminate as much activity as you can around them. Switch off the telly etc

Make sure they're warm or cool them down if they are overheating, a wet wipe or face wipe is useful. Note that temeratures can change quickly too so keep checking

If you do need to lift make sure you lift correctly, bend your knees and try not to hurt yourself

Ask questions, do they need anything? But be specific so that they can nod their heads rather than saying. for example; Do you want a drink? Do you want any painkillers?

If you're giving them a drink use straws 

Sometimes a crash can be due to low blood sugar so get them a sugary drink to help raise it again

For the next few days you will need to be on hand more. You may need to help getting them up, feedin, managing their medication. Especially things that take much concentration. 

Try to make sure that they do not over exert themselves and are resting properly

If a relapse lasts longer than usual or is more severe seek medical help

I have also found this online paper here that can help others understand what is going on in these instances. What signs to look out for and how they can help you. It is well worth the read. Apologies it's been a long one folks but hopefully it's been useful.

Sian x

Severe M.E awareness day

http://www.mookpixie-infofreak.blogspot.co.uk/2014/08/black-dress-selfie.html?m=1

http://lifeintheslowlanewithme.blogspot.co.uk/2014/08/severe-me-awareness-day.html?m=1

"M.E that's that thing where you get tired isn't it?"

No, no it isn't. M.E is an illness. A neurological illness that has been recognised by the World Health Organization since the 1960's. Yet so many people have never even heard of it. Or if they have it is often false statements like the one above. 

I myself suffer from severe M.E. I have very little independance and am housebound about 90% of the time. Ok I might be writing this post from abroad but I'm writing it from a bed abroad and we come here to try and let the sun do some healing. And although my life has changed beyond recognition I know things could be much worse than they are. 

 

Severe M.E at it's very worst can only really be described as a living hell. Unable to move, almost comatose, not being able to recognize your closest family, being so senisitive to light and sound they cause physical pain, tube fed and catheterized. Being so desperate for release from the constant exhaustion and pain but being told there is no cure, no effective enough treatments only tablets that target pain in different ways. Expected just to accept that that is it and to deal with it.

Now imagine being that ill and the police turning up at your home and forcibly removing you from your sick bed and confining you to a mental health ward. As was the case with Karina Hansen. Read my post on her on the following url (apologies I can't do direct link at the moment)

http://howtodealwithme.blogspot.gr/2014/02/justice-for-karina-hansen.html?m=1

This case highlights just how much more awareness there needs to be of this illness. Recently things are changing somewhat. Most recently there is the story of Jessica Taylor a 23 year old girl with severe M.E who has been ill since the age of 14. Confined to a hospital for years in order to be tube fed. As a result she developed osteoperosis and was at risk of braking a bone if she moved. There has been some hope though for her as finally she has been able to withstand hydrotherapy sessions and developed her muscles enough to be able to lift herself up to sit in bed, to stand with assistance and to walk a couple of steps. You can watch the news article on BBC South East on following the link

https://m.facebook.com/BBCSouthEastToday

It is a positive news story for the awareness of severe M.E as it shows photos of Jess pre M.E contrasted with photos taken whilst she was at her worst. The main highlight of the piece is the fact that it has taken 9 years for her to be able to do these very very basic things again. How often do you sit up in bed and then walk to wherever? You probably don't even give those steps much thought. Now imagine not being able to do that for 9 years. It's pretty well unimagineable. Can you imagine even saying my biggest achievement this year was to walk a couple of steps?

However what is important to remember is that Jess is far from better. She is not cured.There is no cure for M.E. Just because she has taken those few steps doesn't mean that she can now walk everywhere. Taking those steps has caused post exertion malaise and it will take her time to recover before she can try again. She is still having seizures and at times is physically sick. However she is over the moon to be experiencing these 'firsts'. 

One of Jess' biggest achievements though is setting up the charity "share a star" which sends a star and other gifts to seriously ill children and teenagers. Having been in that position she knows the importance of having something to hold on to. You can learn more about the charity on the following link.

Lastly I want to share an awareness campaign that started over on Facebook by Janet Smart. The black dress selfie for Severe M.E Day is representative of those many sufferers suffering alone in the dark. It also represents a mark of respect for Sophia Mirza who died of M.E  after being exposed to mistreatment, that left her even worse. Today (August 8th) would have been her 41st birthday and hence why this date was chosen as an awareness date. The day before her death Sophia's mother promised that her life would be a lesson to others and swore to raise more awareness of severe M.E. Learn more about Sophia and her story on their website.

www.sophiaandme.org.uk

You can read some more about the black dress selfie on Sally's blog at 

http://sallyjustme.blogspot.co.uk/2014/08/blackdress.html?m=1

Details of how you can join in and help us raise awareness are on the following poster. Or simply share or retweet the poster. Or other awareness tweets or posts you see. If you care to share Sally's blog post or my own then please do.

My post is also dedicated to my dear friend Irene who passed away in February after 38 years of suffering with severe M.E. Missing her lots today.

I've included some more blog posts at the start of this posts by Anna and Chatlotte other severe M.E sufferers. Again my apologies for not being able to do direct links. 

Sian

A year in review

Photo source: Pinterest

Today marks one year since I started this blog. So happy blogaversarry to me! Where's the cake?! I wanted to do a more in depth post about my reasons for starting the blog and what I've learnt along the way but my brain feels rather numb at the moment. Still recovering after last week. I've been trying and trying to write but my head just won't get into it. So for now I am just going to do a mostly photo based post about my year in the blogging world. 

photo source: Pintetest

I have explained what it's like to have M.E and tried to put it in ways that a non sufferer will understand. Trying to put across that it is much more than just tiredness and that it is a real illness that can have severe and disabling effects.

photo source: Sian Wootton

I have also explained about Fibromyalgia a painful conditon that many M.E sufferers also get, causing painful limbs and hypersensative nerves that can make the simplest of touches to cause pain. A duvet can feel like it's made of bricks. Read my post here.

photo source: pinterest

I have some posts about the things that I learnt at M.E clinic, which thinking back now and knowing the severe side of the illness personally I think in no way was I prepared for it and was therefore left a bit vulnerable at a very scary time. Again, this only goes to show how much more awareness and funding is needed into this illness. What's more it's why starting this blog has been an education to me too as I've been able to discover more as well as share my own experiences. I was actually by the clinic the other day and I wanted to go in and tell them all to use social media to get 24 hour support and understanding. However whilst there I learnt a bit about keeping activity diaries, which you can read about here, to try and establish an activity baseline. Also about the importance of diet and some ways to help you to shop for food and prepare it when you have limited energy and I have created seperate tabs on the blog with tips to help save you some spoons. Read my tips for preparing and cooking here and my tips  on food shopping here.

Photo source: Sian Wootton

Despite everything I have been very lucky to have been able to get away on holiday. Thanks mainly to knowing the resort and people there well but also with a big helping hand from special assistance. Honestly people may moan about Ryanair but their special assistance service is a credit to them. But planning a holiday when you're ill comes with many things to think about and when you don't have much energy to give it can seem an impossible task. That's why I put together a series of posts, a kind of step by step guide to all things holidays when you have a chronic illness. I still have a few more posts to go and then I will collate it all and create a new tab so you can get all the info in one place but do check out some of the posts so far.

Photo source; pinterest

Christmas is a difficult time in the spoonie calendar. So much to do so few spoons to do it with. So actually for me last year I started planning for Christmas in around August (honestly). I should probably start thinking about this Christmas soon. Buying gifts as and when and helping to spread the cost a bit better. Again I provided some tips on how to cope with the holidays when you're chronically ill, which can be read here. I was fortunate enough to get this post as a guest blog on Pajama Daze, a great chronic illness website with blog with lots of positive encouragement for spoonies. Despite having little energy I had a lovely Christmas with family. My Mum needed to open my presents for me as I didn't have the strength but I had some really thoughtful gifts, including 2 spoon necklaces.

Photo source: Sian Wootton

Since becoming ill I try to read as much as possible to keep my mind active. Earlier in the year I shared with you all some of my favourite reads from last year. Read the post here. One of which was Molly Caldwell Crosby's Asleep, which is fascinating. Could this be the origins of M.E and why was it forgotten about? I hope to read it again soon and I'll be writing a blog post about it.

Photo source: Justice for Karina

Earlier in the year marked one year since severe M.E sufferer Karina Hansen from Denmark was forcibly removed from her home and the care of her parents. Having refused psychiatric help knowing it would not help and because the psychiatrist in question did not provide a treatment plan, they thought she was safe. However they managed to twist this around to an act of neglect and that Karina needed to be admitted to a psychiatric ward to make her better. Sadly after a year she is still there and significantly more sick but despite that they refuse to see that their treatment is making her more severely unwell. Please read more about Karina's story here. This is why M.E needs to be recognised as a severe illness by not just a few but by all, especially within the medical profession. M.E has been classed as a neurological illness by the World Health Organization since 1969 yet it still has so much disbelief. This is why raising awareness is so important and is a challenge to us sufferers.

Photo source: Pinterest

On May 12th it was M.E awareness day and I was absolutely staggered by the amount of awareness initiatives going on; mostly by sufferers themselves. It was just incredible to feel a part of a group that were giving it all they could to  raise awareness and fundraise for various M.E charities. People that don't have a lot to give due to the very illness they're trying to raise awareness of but are doing what they can to make a difference. For me it felt like we were giving ourselves a chance, fighting to be believed so that we can get the research and funding we need to find treatments and with any luck a cure. 

Myself and a group of close friends that have got to know each other through social media all embarked on a big canpaign to fundraise for Invest in M.E. We shared our stories, shared articles etc. Then on May 12th we all dressed as Princesses to show that being stuck in bed is far from a fairytale and we might be royally demanding at times but that is due to our illness making us unable to do much for ourselves. I hope to have a post about it soon. Yesterday we found out we have raised £4000, which is just staggering and can help make a big difference. The support we have received has been truly amazing. It was incredible to be a part of such a dedicated team, who all did their best with what little they had. It's amazing how those who have so little to give are actually the biggest givers. 

So there we have it one year of blogging and I've not covered it all here either. I have really enjoyed it. I'll speak more indepth about what I've learnt etc in another post but this blog has certainly been a lifeline in a way. So here's to many more posts and a huge thank you to all that have read my blog. It means the world.

Sian xx

Travel toiletries update

Just a little update on some travel toiletries that I wanted to share with you all. At the weekend I went shopping (woo! Round of applause for that!) and found a cute new toiletries bag, one that I can hang on the back of doors etc. If you only have a small bathroom with limited shelf space or say you are on a cruise or a caravan then these can be a great solution. This one is also waterproof which can be useful. They're so great as you can separate your things into different compartments. The only thing I would say is that if you're going somewhere hot then don't keep your make up in it as the extra steam from the shower could cause your make up to melt. If you have a fridge in your room then hog it with your make up.

 

It also came with a floral drawstring bag too. That will be great for extra storage or for putting a travel hair dryer in. Or even as a small laundry bag for a weekend trip. I plan to use it as my essentials bag for the plane, to put all the things I'm likely to need within the first half an hour of the flight in. I think it will be good for that as it can be hung up too. I got this from Forever 21. They also have them on their website at www.forever21.com 

Whilst there I also picked up this make up bag. Also available on their website, as well as a black version. I got this as I thought the selection of brushes was good. Usually with a travel set you only get 5, but because these are double ended you get a wider selection. And the make up bag itself also has a clear panel so you can use it in your hand luggage if you want.

In my original post I was also looking for a bb cream to use on holiday, to help protect my skin in the sun but offer me good coverage. After asking for advice on instagram and searching Pinterest I got a few recommendations and off I popped to Boots to try some out. It was in the evening so not all the counters were manned but there was a lady on the Smashbox counter and as it was one  that was recommended I asked for some help. This Camera Ready BB cream has a high level of sunscreen at factor 35 and it also offers good coverage. And as it says it preps your skin for those ample photo opportunities on holiday, by priming the skin and evening up your skin tone while covering up any blemishes. It's really light too. I can't wait to use it on holiday. I used it one day last week on a crazily muggy day and despite my face dripping from the heat it still offered good coverage. I found it better than a foundation in this hot weather as my skin could breathe more. They also have a CC cream in am spf 30 if you want to even up your skin tone, which actually might be good if your face gets a funny tan.

I have been meaning to get to Superdrug for a while to stock up on some travel toiletries, many of which I mentioned in my original post but just haven't got there. However, they do have free delivery when you spend more than £10 online, which I thought was great and consequently took advantage of. As you can see I got the mini Nivea suncream lotion, protective lip balm, Simple moisturizing face wash and some Palmers Cocoa Butter as I mentioned in the post. I also got a tea tree exfoliating cream, tea tree is great for calming your skin and regular exfoliating on holiday can help develop that tan. I also got a raspberry and strawberry shower gel as I thought it would smell divine, probably not mixed with the tea tree though, so it may get used on other occasions. Superdrugs own mini shower gels come in great sized bottles. I find some of the others like Dove or Nivea too tiny for longer holidays. I also got some scalp protection spray by Malibu. Malibu is just the smell of holidays. I got this as the tops of our heads are so vulnerable to sun burn. Although I plan on wearing a hat most the time in the sun but it's good to have that added protection and because the suns rays can still get you. It's only a factor 15 though, so I will be using it fairly regularly.

I can't believe I didn't mention Soap and Glory in my original post. I love these but I don't actually have many products. Probably as I don't go into Boots that often (sometimes that shop overwhelms me.) They always have great gift sets around Christmas so they are great presents. I love the body butter and hand food.

In this muggy weather and because my tablets make me really thirsty, I've been trying to keep myself well hydrated. Which can sometimes be funny when your legs aren't working properly. But I think this will help prepare my body and skin for my holiday too. We've resorted to using a jug so I have enough and am not constantly asking for a drink but actually it's a good way to keep track of how much you are drinking. I've been using some rehydration tablets too to help with heat induced cramping and just being a complete sweaty Betty and I find they help. I will be taking a pack on holiday with me. My packing list is getting very long!

Another thing I'll quickly mention on this topic and is getting a well deserved spot in my suitcase is a filtered water bottle. I spoke a bit about them in my packing post, but basically they are a re-useable water bottle that has a filter in the neck. This means that you can drink the tap water and all the impurities that you might have been worried about get filtered away. Saving you a small fortune on buying bottles of water and giving you a few more pennies to spend on ice cream or bracelets.

On the weekend I'm also hoping to go to the spa for Body Silk Glistener treatment. This is a full body exfoliation and moiturising treatment to help get your skin all scrubbed and fresh and ready for the sun. So I'm looking forward to that. 

How do you like to prep your skin for holidays?  Let me know in the comments.

Sian

Spoonie Travel Interview with Sophie

As part of my travel series I wanted to interview some other chronically ill people that know about their experiences of travelling to give you all as much information as possible as well as ideas where is good to go. Today is the turn of my good friend Sophie, who earlier in the year went on her honeymoon. 

Name: Sophie

Illness: Severe M.E and spinal damage

Destination: Lisbon, Portugal

Who did you travel with? My husband

What airline did you use? EasyJet

 

 

First of all, how was your holiday? It was lovely, it was our honeymoon and was very much worth the 9 month wait! 

What was your biggest worry before travelling? And how did you overcome it/ justify it? Flying is always my biggest worry with travelling, not only because of the standing around at airports, and business, but because I hate flying. My fears of the airport itself where overcome when suggested to me (by your lovely self), that I book assistance. The assistance staff were all very helpful and even took care of me when I had a panic attack about the actual flight and my husband wasn't near me. 



Did you notice any changes in your health whilst away? Good or bad? Any new symptoms? I was able to walk a bit more than I can at home, I think the warm weather helped in that regard, although I did over do it. It is a very hilly city, and in my stubbornness decided I could climb them. I didn't notice the effects of this until I got back to England though, I was enjoying my honeymoon too much to notice!



How was.... as a resort/ destination in relation to your illnesses/disability? (Access, flat, close to restaurants etc, quiet) 

Lisbon is a lovely city, but it isn't easily accessible, it is built on 7 hills of varying height and the streets are narrow and paved with a marble-like cobble effect which makes them slippery. 

Some of the things we went to see were accessible, the Oceanarium and Zoo, for example. But other's weren't so easy like the Estadio De Luz which was out of the way and took a lot of walking to. The Castle wasn't easily accessible by foot either, but there was a bus that went up to the ticket office. 

We didn't stay in a hotel instead we found a lovely apartment from Air BnB to stay in, and although it was in one of the small streets it was quiet and in the centre of everything. 

The open top tour buses were fully accessible with wheelchair spaces and friendly staff - we used the City Sightseeing company, but there were 3 other companies who all looked as accessible. This was a brilliant way to see the city without doing too much walking. 

  

How did you find attitudes/perceptions towards you by other travellers and from the locals?

 

When we were out I had my fold up stick rather than my bright pink crutches. Simply because my crutches were just getting in my way around the streets, and it was easier to not use them. So people didn't really notice there was anything wrong with me, just that I walked slowly and stopped a lot!

From your experience(s) what piece(s) of advice would you pass on to other spoonie travellers? 

Make sure you check your destination is accessible. We didn't when we booked it as I wasn't very ill, but 2 weeks before I had a knock back and my husband was close to cancelling the trip after I looked to see how easy Lisbon was to get around in a wheelchair.



What items would you not travel without?

My fold up stick. When the streets were too difficult to use my crutches, my switch stick was my lifesaver. 

What are your favourite holiday beauty products?

My GHDs. I never go to stay anywhere without them! 

 

 

If you were to go on holiday again what would y do differently?

Next time we will make sure our destination is accessible, I will have no choice but to use my wheelchair on our next holiday and we have learnt from our mistake! 

How are you after the holiday?

I was a wreck when we got back and have taken a long time to recover, but I was so ill when we went that I think not going wouldn't have made much of a difference to how I am now.

Do you thin that despite all the extra 'hassles' of travelling as a chronically ill person it is still worth it?

Definitely, we might have to do it differently to other people, but just because we are ill doesn't mean we should miss out on holidays!

 

I hope you have enjoyed this interview, if you want to read some more from Sophie, take a read of her blog nonsensefrommysofa.wordpress.com

Sian x