Goodbye 2013

So here we are at the end of 2013. I can hardly believe that. To coin a popular phrase "where has this year gone?" But it's true, time just seems to have gone so quickly, other than the long nights when I've been in pain and the constant clock watching for the next dose of pain killers. It does make me question yet another popular phrase "time flies when you're having fun," because there is not much fun when you are living with a chronic illness or pain.

New Years Eve always feels a bit strange to me. It's one of those dates where you feel you ought to be celebrating and making resolutions that the next year is going to be 'your year.' But when you know that sometimes you don't get a say in whether it will be 'your year' or not it can be difficult. Maybe it is just a modern culture thing that you feel a though everyone else is out partying and you're being boring sat on your bum watching rubbish pre-recorded tv or going to bed early and trying to sleep through the fireworks. However I will be reflecting on what has happened over the past 12 months and desperately hoping for good times in the new year. How can you not on this day? 

It can be so easy to just focus on the negative things though, for some reason our brains seem to retain and recall them much more than happier memories. I have just done one of those year reviews on Facebook and been looking through some photos and it's reminded me of some of the nicer things that have happened this year. To be honest I can't believe that they were this year, which sounds strange when I've just said that time has gone so quickly. There was, catching up with family that I'd not seen in years. A Christening. A baby shower. My friend gave birth to a gorgeous baby boy. The beautiful weather we had this summer. Two holidays, that also included meeting friends we met last year and continuing friendship with two beautiful Greek families, that I have come to love dearly. It was lovely to celebrate a Greek Goddess' birthday and make her feel special, because she is. As well as them helping make my Dad's birthday so fun. Not sure if he appreciated the X amount of candles though. The owner of the restaurant even ordered a ramp for my wheelchair to get into the inside section.

I am just so glad that despite how bad and frightening my condition got this year that with the support of my family and airport assistance I could get away to a place where I feel so comfortable and relaxed and where I can laugh often, which afterall is the best medicine. I simply couldn't even imagine getting away without all their support. The support and holiday were much needed. 

And of course I have to mention the major event that was meeting the gorgeous Pasha and Katya. I don't think I have ever been so awestruck. I needed to have a serious word with myself to calm down, it would do no good to pass out and miss my photo opportunity. Seriously the television does not do tht man enough justice, other than showing his great personality. Funnily enough though it was shortly after that, that my legs began to give way. Hmm could this be the answer. Looking forward to seeing them again next year, hopefully.

Then I managed to get out for my birthday dinner, which meant more to me than any present. And to top it off having a lovely Christmas.

As I've said before it's really important to focus on the positives. Yes, this year has seen me completely bedbound for a time and the only way I can leave the house is via wheelchair but in getting the wheelchair I've been able to make more out of my better days. It was such a hard decision to make, as it's placing yourself in a vulnerable position. It is a symbol that you have a disability and admitting that and facing the consequences is scary and heartbraking. Especially for someone that used to be so active. As soon as I could start participating more in normal things like going shopping I soon saw that this was a way of gaining some freedom and keeping my mental health stable.

The other great thing to have come out of this year was starting this blog. I'd never really heard much about blogging before or even read one, but once I did I thought it would be a worthwhile thing to do. I always want to try and be proactive but obviously when you suffer from a chronic illness it can be difficult to just get through each day. You feel as though you should be raising awareness but that's hard to do with little energy. You often associate raising awareness with a charity event, which requires  lot of work. But this blog has really helped, if only for cathartic reasons. If by writing this blog I can help other sufferers, which it seems it is doing from some of the lovely comments I get, or to raise awarenes of the illness then all the better. I never could have imagined that it would give me the support of lots of others in similiar situations. That I would come to get to know people that understood completely and have words to comfort because they know exactly what it's like. A lot of the time we don't even speak about our illnesses, but when we do there's a lot of people that will lend an ear or share a moan. Our favourite moan at the moment is how annoyed we get by people broadcasting how bored they are of being ill with a cold for a day.

I've also enjoyed receiving comments from people that have never heard of M.E and that thank me for opening their eyes. That a few more people know about it and the devastating effects it can have on someones life and on the lives of people around them is reassuring. It's so scary to be diagnosed with something that you've never really heard of and neither has many other people because you don't know what to expect and you can spend a lot of time trying to explain yourself, trying to make people understand the severity of the condition. People that may have heard about it assume it's as simple as being tired all the time.

To throw in a reference to my parents and dear friends Marian, Bob, Aggy, Eddie, Karen, Mete and Vasillis it's been a one thumb up one thumb down year. I'd tell you all the joke but I've laughed it out of my brain. But to leave you all with a quote that I put on my Facebook blog page recently link;

Happiness can be found, even in the darkest of times, 

if one only remembers to turn on the light

Albus Dumbledore

Whether you're a Harry Potter fan or not I think this rings true. Things are tough but there is still so much to be thankful for, moments of brightness in everyday. People that are there with kind words. A good book or a film that maked you laugh out loud. Recalling happy memories and looking at photos from good times. So when your health allows, enjoy it, make those lovely memories to look back on, on darker days. Take pictures to help you recall them. This goes for everyone whether they suffer from a chronic illness or not, life can be cruel to us all times. Above all don't take your health for granted, both physical and mental. Good health is a gift that often gets overlooked.

All that remains for me to say is to wish you all a happy new year, all the best and keep creating fab memories. 

Post Christmas Exertional Malaise

Owww. Ouch! Bleepy bleep bleep bleep. Yes that is how good I felt yeterday. And all because I dared to celebrate Christmas. How dare I try and be normal. Christmas Day wasn't too bad I spent the majority of Christmas day in bed resting and then came downstairs for a couple of hours in the evening. It was strange though excluding myself from dinner (even though I cannot tolerate it) but it's difficult to not listen to that voice that says that you should be joining in the festivities and that you are being completely unsociable. But it was the right thing to do, to help myself recover from Christmas Eve. Boxing day my symptoms were more prevelant, aching and fatigue. I managed to have a bath with help in the afternoon, trying to make the most of being able to get to the bathroom and not wanting to smell of course. I rested again afterwards in the hope of getting downstairs again that evening. Remember my basic target is to get downsairs everyday. I managed to get to the top of the stairs and went to shout down for help to get down, but that just ended up as a "help, me stand up and get back to bed." I was in too much pain and exhausted to manage it. It made me quite dissapointed as I was bored lying in bed and wanted some company but in the grander scheme of things that's the first time in a long time that I've not managed to get downstairs at least once a day. And I had a pretty good reason for not being able to. So I wasn't too down on myself.

Boxing day night the wind was terrible, but luckily I was so shattered that I managed to sleep well. I think though that listening to the wind made me huddle up more in bed so trying to get up yesterday morning was just agony and I couldn't do it without help. Damn bladder again, I would have stayed where I was if I hadn't needed to pee. I'm sure my Mum appreciated the 5am text for help too.

Yesterday (27th) was probably the worst suffering wise, all my muscles ached and my pain killers weren't having much of an effect. I thought though that if I could try and move around a bit it may help to loosen up the muscles and distract me somewhat. Luckily I managed to bum shuffle downstairs and plonk myself in front of the television for the afternoon. Woo back to back Cake Boss and the Downton Christmas special! This made the suffering more bareable but I was still clock watching for my next lot of pain killers.

One thing that did really help me through the post Christmas suffering though was the support of other ME suffers on Twitter. We all knew that we weren't the only ones in pain and could help each other through. I have 'met' some lovely peole on there, one even sent me a handmade personalised bracelet as a Christmas present. It's good to be able to reachout to people that know exactly what you're going through and can help you to see some brightness. It's also lovely to be able to offer support to others and feel part of a community, which is difficult when you can't socialise often. It's difficult to cope with the feeling of being punished for just trying to be 'normal.'

So enough of the rubbish and let me focus on the good. Because it's really important to find something bright in each day even though on the whole the outlook is bleak. Well actually Christmas Eve was filled with lovely moments and I was able to do as I planned (see my post It's beginning to look a look a lot like Christmas).

The day started earlier than planned as my nephews came round earlier  so I lost a couple of hours rest. But I hate not being 'present' when my nephews are here. It's easy to get into the mindset though of 'I'm just sitting.' They came round early as they were full of cold and then of course in the spirit of Christmas generousity kindly gave me a cough. I love them really. Then everyone else kind of arrived at once. I met my cousin(ish)/Polish Goddess's new boyfriend (Hi Jon!) and cue giggles and some very in depth conversations about ME and mental illnesses. And how horrified we were about the sign language interpretter at Nelson Mandela's funeral being mocked. That man has reached the most prestigous height in his career to have been given the duty of such an event despite all of his demons of such a misunderstood illness. He was left on his own whereas they should work in teams infront of the worlds media and some of the worlds most powerful people yet he fought to get through, he couldn't very well leave the stage. How many people when faced with trauma and distress could keep calm? Schizophrenia does not make someone a violent person. If he had suffered something physical on that stage he would have had sympathy but instead he was mocked. Okay, sorry for going waaaay of topic. It's just something that really riled me. It annoys me that mental illnesses have such bad reputations. Most people that are diagnosed with a mental illness just want to be able to live normal lives and are scared not be labelled.

Anyhow back on topic, perhaps that's where I used up much of my energy. I managed to help myself to some food and feed myself so that was a plus. Most of the evening I was sat with my feet up. At one stage everyone else was in the kitchen and I was the only one in the living room, which felt a bit odd. By the time we got round to giving out presents I was really beginning to flag. I couldn't hand my gifts out and was just sat like the Queen of Sheeba as people came to me bearing gifts. I wished I'd have looked that good and not a baggy eyed zombie moulded to the sofa. I couldn't even open my own presents so my Mum had to open most of them for me. Her trying not to open them and peaking what it was before I got to see. I got one present in a gift bag which I thought I could hopefully manage but someone was a bit over zealous with the selotape and the gifts inside were all wrapped. So tip number one for giving gifts to people with chronic illness or pain; use a gift bag and not seal it shut like an Egyptian curse and you don't need to wrap the gifts that are inside. Tip number two; be economical with the selotape whether it be on a gift bag or wrapped present. And tip number 3; more expensive thicker wrapping paper is very nice but very hard to rip open (yes I know you should unfold it neatly) but ripping is easier on our more weak muscles. So cheap wrapping paper is much better for us. Hopefully it hasn't ripped too much in the wrapping and delivering process.

I recieved some lovely gifts. Very thoughtful things that are much needed like new pyjamas, new slippers, dressing gown ( IT'S SO FLUFFY!) and books. A spa voucher, which I'm thinking maybe to treat myself to an Indian head massage and facial. I do enjoy back, neck and shoulder massages but it can be touch and go with the Fibromyalgia whether it does more harm than good. Lying on a heated surface in the sauna and steam rooms should really help though and hopefully I'll be able to manage a jacuzzi. My most touching gifts, other than the personalised bracelet, was the two spoon necklaces I got (see photos). They will remind me to use my spoons wisely and on the people that deserve them. That it's not wrong to put myself first. Or to waste spoons on matters beyond me or people that do not deserve to occupy too much head space. I also feel that in giving me these spoons it's a symbol of the support and understanding they give me. That they are willing to use their spoons to help me where they can so I don't have to suffer as much. Oh wow this is emotional. Are you crying Mother dearest?

Afterwards I was really struggling. I actually fell asleep. Unfortunately or perhaps fortunately it was during a conversation with my cousin and Nanna. I've heard most of it before so I don't think I missed much. My parents tried to get me up to bed with me looking like a drunk being escorted from a nightclub. Getting up the stairs was interesting. I fell asleep and started to slide down. Waking up because of the pain of my parents trying to keep me upright.

So was it worth it? Of course it was. The escapeism of normal life is refreshing. It's good to be included and to join in where you can. Otherwise morale can really suffer and as I have said time and time again I am so conscious of not getting my self into a severe state of depression again. It truly scares me. These moments to spend with family and friends are so important and keep us strong. I couldn't cope without them. I only wish that we didn't have to suffer for it, just for trying to get some normality and fun. It's one of the most unjust things about chronic illness.

So to all sufferers I hope you are resting and regaining some strength. Talk to one another. We can help each other through. But I also hope you feel it was worth it. That you made some lovely memories and had a good time. And for all non spoonies I hope you had a great Christmas too.

Mind your P's and D's

This is something that I was taught at chronic fatigue clinic and I feel is the most valuable piece of information that I learnt there. It's something that I can use every day, no matter the type of day I'm having. It's all about how you organise yourself and of course those ever useful spoons. I thought that it would be good to post this now, in the run up to Christmas and also to help back up my posts on travelling, which I hope to continue in the new year. And just to make it clear the p's have nothing to do with waterworks. That is another story- naughty amitriptyline.

So the first P stands for Planning. As many spoonies know it takes a lot of planning and preperation in order to do a lot of things. It often feels like a military operation. Not just in getting out of the house but planning how best to use your spoons on a daily basis. So with that in mind it is always best to plan on the day, when you know roughly how many spoons you have, what your symptims are and what you're capable of. The day before might have been a good day and may fill your head with plans for the next day but chances are you may not be feeling the same as the previous day. Therefore you may not be able to manage what you had planned, which can lead to frustration and disappointment. Of course some things do need to be planned in advance, special ocassions or holidays, even doctors or dentist appointments, where you can in some respects try and reserve some energy. And you need to be as prepared as possible for those events. But think how often we have to change plans on the day or last minute because of our health. Hopefully people will understand in those situations and there's always hope that you'll make it next time. Of course the plan should also be flexible enough for any fluctuation in your symptoms throughout the day. I sometimes like to make a tick list as it's something that I used to do at work. It feels rewarding to tick things off and feel a sense of achievement.

Once you have a rough plan, it's time to utilise the next P, which stands for prioritise. Putting the tasks on your list into order of importance. And this is where the D's come in. First ask your self; Does it need doing? Okay it might be on your to do list but how realistic were you being with that list? Again, here think about the best way to use the energy that you have and also consider the reasoning behind doing something. Is this connected to your own or other people expectations? Take a look at my post on expectations. If people are coming to the house do you absolutely need to hoover the whole house? Or is that something that has been impressed upon you? Chances are unless the house is an actual wreck then they wouldn't notice, unless you pointed it out. They've come to see you not your carpet. So if something doesn't need doing or doesn't need doing specifically on that day then ditch it!

The next thing to ask yourself is does it need doing by me? To use a Christmas example; you may have presents to wrap but is there someone that could help you with this? Provided the present isn't theres of course. Wrapping presents is consuming. You can always go the gift bag route though as I have this year. My arms are too weak for scissors. Again expectations can come into play here, often in the form of standards. Believing no one can do as good a job as you could, or they wouldn't do it how you would. And if they did then they'd only do it wrong and you'd have to do it the right way after they've botched it up. Decide what you can delegate, to help save your spoons. This might be useful for bigger tasks such as going food shopping. Can you ask someone to do this for you? It's difficult if you live on your own of course, but perhaps a neighbour or friend could help with some tasks. Putting the bins out on recycling day, walking your dog or mowing the lawn for you. I think my Dad will say that I have become a master in delegating. Or that "Daaaaaaad?!" is one of the D's. But I'm very lucky to have help and the majority of the time I genuinely couldn't do what I've asked for myself. Such as cook, or make a hot drink.

Now that you know the tasks that you can do, ask yourself Does it need doing now? For example taking a shower, do you have to have it at that point of the day or can you wait?  And then the last D is for Do it! Not that it is ever that easy sometimes. Depending of course, on the activity. Watching television or reading might be easier than say emptying the dishwasher, depending on whether you are having more mental or physical symptoms.

Some tasks will also require the use of another P, which is a secondary form of planning. It's about making sure that you have the necessary 'tools' at your disposal to undertake the task. Imagine a window cleaner, after putting up the ladder they do not go up the ladder and then come back down to get a sponge, they take the sponge with them to avoid any more unneccesary excertion. So if you plan on cooking make things a little easier for yourself by having all your ingredients and utensils together. You can always take a break between getting things together and starting, obviously where food hygiene allows. Or even for something smaller like watching the tv, make sure you have the remote handy and any drinks or snacks you may want.

Finally the last P stands for pace,using pacing mindfully whilst doing some tasks can help. Do them at a leisurely pace and take breaks if needed. Try not to multitask as well, do one thing at a time. I am terrible for watching television and being on the internet, which means I'm using up more spoons and concentration.This is where you need to listen to your body carefully and learn to stop before you become overwhelmed with fatigue. Remember that tiredness is a warning signal. So it is important to learn how much you can do before you begin to feel tired. By doing this you are also gaining some control over probably the most important P of all ( yes I know I said finally for pace but that was for the planning process) post exertional malaise.

Perhaps I have explained it before, but post exertional malaise is the state that M.E sufferers experience after doing an activity. Sometimes it occurs straight away, other times it can strike a day or a couple of days afterwards. It's true what they say about how you suffer more the second day after a more active task. How long you will experience post exertional malaise can also vary. It may be just a day or it could be months. I am certainly still suffering from going on holiday in October. But it doesn't just occur after big events it can happen after simple activities too, like taking a shower.  Post exertional malaise really sets M.E apart from other illnesses as we lack the ability to recover quickly. We often call it payback. So any ways in which we can reduce the stress of an activity i.e by pacing it can help us not suffer as much payback. It's good to find a baseline of how much activity that you can withstand without going into post exertional malaise. I have a post called things I learnt at clinic; diaries which explains one way of helping you establish a baseline. Remember though that your baseline can change if you experience a flare up or perhaps another illness. I haven't done a diary since relapsing in May because most of my time I need to rest and I'm getting better at reading the signals to stop before I become overwhelmed. But hopefully in the new year I will start establishing my baseline again.

I hope this post has been useful and that you can put it into practise. Perhaps to help you through the holidays and also on a daily basis.

This will probably be my last post now before Christmas ( as I need to rest) so I wish you all the best and I hope you can enjoy it as much as you possibly can. Take it easy.

P.S my blog now has a Facebook page. I've set it up to share smaller things that I can't post on here. There will be lots of inspirational quotes, things to make you smile and laugh and also some crafty things to help keep yourself or any little ones entertained. I already have a Christmas craft album. So come join in at www.facebook.com/memyselfandmeblogpage

Stress

I found this great personal account of the impact of stress on our bodies and the ways in which it manifests in patients with M.E/ CFS http://www.recoveryfromcfs.org/chapter13.htm.

But why would I be researching this? Or just typing some key words into Google, as it were. Well because the last few weeks I have really noticed the impact that stress can have on the body. In other words I have been stressed. And of course we are now in the season of added stress. Christmas or the holidays should I say (thank you Lindsey Kelk) can be very stressful at times. Work deadlines. Cooking. Fighting for a parking space at over crowded shopping centres. Trying to please everyone. Trying to wrap a round present and making a total bodge of it (hey, at least they'll never guess what it is.) Whilst all the while being reminded that you are supposed to be cheerful. 

What is stress? What does it mean to be stressed? Well stress is subjective to each individual. What one person finds stressful will not affect someone else. Which may be down to certain fears, phobias or exposure to stresses. The word stressed, is used a lot in modern culture. Perhaps due to our faster pace of living and the financial, physical and emotional effects of the recession. However, to be stressed does not directly corelate to being in high pressure situations or to experience that for long periods of time. Of course they are stressful and can have negative impacts on our health, but a stressor, something that causes us to stress can be momentary. Again think about a tiger entering a room where you are, it's not been approaching for weeks. If it had then you would hopefully have moved out of it's way. Our natural instinct is to to get ourselves out of harms way, as would be your natural response in a momentary situation.

When we find ourselves faced with something stressful it triggers our bodies natural fight or flight instinct. Something that has been helping humans to survive for as long as humans have been around (can you tell I have no idea how long that is?) Our bodies produce adrenaline. Our heart rate quickens, to allow oxygen to get to our muscles quicker, so that we can run away if need be. Our temperature rises and we sweat. We can also feel asthough we need to go to the toilet. Both of these excretions are due to our bodies trying to make themselves as light as possible to aid a quick get away. As I have mentioned before in one of my posts, physiologically we are still programmed like cave people. We see something that will cause us harm (a stressor) and our instinct is to survive, whether that be to stick around and fight or to run.

However they are only momentary stresses. In the modern world stress has become a long term condition. Again to use the Christmas analogy or the pressures of work and providing for a family, they are issues that are faced every day and many people bury their heads in the sands to them. In the case of so many people that now suffer with M.E, for how long did we keep driving through all the signs that we weren't coping and try to carry on as normal. Despite 6 hospital admissions in as many weeks, falling down the stairs, or my face blowing up to Quasimodo proportions or having a major panic attack at a train station I didn't get the message. But that was my body saying " Hello! I really can't cope!" And there lies the nub of it, we are not designed to tolerate stress for long periods of time. Like I said, physiologically we are still cave men and women who should only experiene stress when a saber tooth tiger comes our way. But today's stressors come in many forms. I wouldn't have said that what I was doing before the onset of my M.E was overly stressful, because I was having the time of my life. But at the same time I was in a high pressued environment, working long hours, leading a team of people, theatrical temprements and all that.

So in general a lot of us are more exposed to stressors for longer periods of time, which we are not designed to deal with. Of course, some people do and they fare just fine. However if we are in a lengthened period of stress it can affect our health both physically and mentally. Being constantly in a state of stress, where that fight or flight signal is on high alert constantly is symptomatic of anxiety, and anxiety can be a debilitating mental health issue. Trust me, I've been there. Anxiety is a clear signal that your body and brain are not responding to a stressor in the right way and therefore sending you into turmoil. In many cases instead of dealing with stresses as they arise or letting issues bottle up can mean that you are over exposed to stress and remember we are only meant to deal with it momentarily. We can also be dealing with many stresses all at once, again the pressures of work and financial issues that stem from that. By being exposed to stress or multiple stressors without dealing with them can make people vulnerable to physical and mental illnesses. It can also mean that we are tuning out of our bodies natural instincts. Stress like pain is a warning signal that you are in danger of harm. So if we stop listening to that and just carry on that natural response can become weakend.

Again to go back to the onset of M.E, how many times did I ignore those pain and stress signals and plough through until my body literally broke down and I ended up in hospital because I was asleep for 3 days. And now my responses to stress and pain are all mis-wired. Our bodies are constantly telling us we're tired even though we have had enough sleep or the old "but I haven't done anything to warrant being this tired, I only sat up." Then there is the pain when we know that we shouldn't really be experiencing the type of exruciating pain that we are, there's no inflammation, no pulled muscles or broken bones. And if you have fibromalgia too, then just the lightest touch can make you wince in pain or the weight of a blanket. I can no longer wear close fitting leather boots because of the pain at the back of my legs. The sound of a phone ringing or doorbell can makes us jolt.

But as the article says just because we do little doesn't mean that we are immune to life's other stresses. We are still a part of the larger world, even though it doesn't feel like it at times. Whatever is affecting your family and friends still affects you. Only we have the added pressure of doing very little about it. We stress about finances and not being able to earn the money that we need to live from being able to work. About whether we're annoying others by needing them to care for us and the stress of not being able to do the very simple things that we used to take for granted, feed ourselves, hold a book upright, concentrate on a television programme. And all that added stress can make our symptoms much worse. Last week I had my first panic attack in ages because I was so wound up. By body just couldn't cope and went haywire. Unfortunately this meant coming on a week earlier and having a 2 week period ( apologies Male readers I'm just trying to show just how out of sync I was.)

Of course we can't completely avoid stress but we can learn techniques to help us cope with it and learn to avoid some things that cause us unnecessary stress. See my post on mindfullness for some techniques or try gentle yoga, relaxation cd's and meditation. Give yourself the tlc that you need. As for avoiding things or people well sometimes that's not easy. But you can learn to stop putting other people before yourself, especially if they do little for you. You can hide statuses from your facebook feed so as not to be bombarded by annoying comments. You can not watch the news or sad programmes that can have a negative impact on your mood. Same goes for music. You can avoid going to places when they are at their busiest.

See the link for some more ideas and I hope that your holidays are as stress free as possible.

It's beginning to look a lot like Christmas

So while lately I haven't been able to do very much, for two days last week and again this week I had to rest my right arm completely as it was really painful and everytime I used it my shoulder would spasm, meaning that I have been a lot more dependant. And making a mess of myself trying to feed myself with my left hand. In other ways though I am actually really organized (old habits die hard). Yes, as the title of this post suggests I am actually prepared for Christmas. Mainly because since I had that spell of being completely bed bound I have really taken advantage of the times that I have been able to get out of the house, by getting to the shops. Appreciating that my health has allowed me to get out and being mindful of the fact that you never can tell when you will take a turn for the worst or just not be well enough to cope with getting out of the house. Afterall shopping can be an exhausting experience. With this in mind I started my Christmas shopping in August. Thinking about Christmas in August! Usually I am averse to being spoonfed Chrsitmas once the shops have had their Summer sales, especially since I have a November birthday, but needs must. Fortunately now I only have one more gift to get, which is a relief with the way I have been feeling and it will probably be an internet purchase. Again where would us spoonies be without the internet. 

I think that if it came to Christmas and I had nothing to give, I would feel embarrased and a bit rude. I know that the recipients, or non-recipients in that case, would understand and know it wasn't because I was being a Scrooge but it would make me rather uncomfortable. I guess, with not being able to contribute much else in the way of help during Christmas, that I see gift giving as an extended form of giving back. Saying thankyou for all the things that they have done for me and that I really do appreciate all that they do for me.

Another reason to start the shopping early is of course for financial reasons. I find it better to spread the cost rather than all of a sudden get to the end of November/ December and have a chunk of money to pay out. Christmas can be a costly time of year as it is so any ways  you can keep the cost down the better. Especially if you are not earning.

When it comes to Christmas, like any big events in a spoonies calendar, it's important to think about the way you intend to use your spoons. Other than for delving into lots of yummy desserts of course. It's even more important if your celebrations last over a few days. For example if you have a Christmas Eve or Boxing Day celebration tradition or visiting other family members or friends. In my family we have a tradition of celebrating Christmas on Christmas Eve, yes including presents. Impatience or what? The family all get together at whoevers 'turn' it is that year, to eat and share presents. When we were young, after tea we used to all 'go hide' upstairs, unless we were in my Nanna's bungalow of course, and pretend to be asleep. Then one of the grown up's would shout out "he's been," and we would all pelt it to the lounge, where all the presents would be laid out. One year my Nanna got into trouble for filming the parents putting out the presents, oops! Of course now I am scarred for life because as a grown up I never got to meet Father Christmas, like my parents and siblings did but it made for a special childhood. Anyway enough psychological fodder.

My point is that you have to think about what you can honestly handle. Because Christmas might be the season of miracles but sadly one of them is not a 'get out of jail free card' from chronic illness. So this may mean choosing one 'celebration' or gathering and focusing on using your energy for that, rather than spreading it out. Or perhaps you fare better the other way around and being careful to limit your time at each. Because of our Christmas Eve tradition to be able to join in then is my goal. We have made things easier by hosting it at our house. I just hope I don't get overwhelmed and throw a diva fit where "everybody needs to leave, now". My aim is to get downstairs and make the most that I can of it. Even if that means I am in my pyjamas and hopefully Christmas jumper. Even if I need to be fed or have someone else distribute and open my presents. That is where my Christmas spoons are being spent. I would love to be able to make some of my novelty cupcakes for the ocassion but I've not been able to bake since about March. If I can make it to the table or downstairs the next day to eat Christmas dinner then that's a bonus. But if I can't, I can't and that will be understood. 

My first Christmas that I spent as an ME sufferer was odd but also an experience that taught me a lot about the understanding and compassion of others. A friend that I had been on my masters course could not afford to go home to California for Christmas and was facing having to spend it alone. Well in the words of the song "no body outta be all alone on Christmas," so I invited her to come stay with us. She knew about my situation having been there when I dropped off the end of the world and she had stayed with us a few months before too. However, I did warn her that unfortunately I might not be very sociable. Luckily she completely understood and was just grateful for the times that I could spend with her and that my family had been so welcoming. Honestly, my family are just all heart. It did feel odd though when I was upstairs and I could hear them all downstairs, especially during Christmas dinner. 

So like I said this year my aim is for Christmas Eve and if I don't make it to thr dinner table or downstairs on Christmas day, then that's okay. To be honest ( shocking revelation alert!) I don't even like Christmas dinner. That's no slight on my Mum's cooking. I'm not even fond of roast dinners. Oh how un-British of me! This has been even more pronounced since having ME, aswell as a myriad of stomach pronlems, I just can't seem to stomach it, even the smell.

So think carefully about what it is you want to celebrate this Christmas and about what Christmas means to you. Does it matter if you can't manage to cook a 'proper' Christmas dinner? Would it even matter if you ate a microwave meal? Would you rather put the energy into spending time socialising. As ever be realistic with yourself and accept help. Shop online if needs be. Decorate or write out Christmas cards early to give yourself some time to recover. All my presents this year are being put in gift bags to avoid the pain of wrapping. 

 And of course you have to also expect that something may throw a spanner in the works and spoil what you had intended to do. So perhaps you need a back up plan in place. Also remember that your plans over Christmas may mean you are not up to celebrating New Years, so be careful what you plan. I think again it's about challenging those expectations. Who says Christmas has to be celebrated a certain way? Do what you can. 

 Perhaps my posts with helpful tips on  food shopping and cooking and preparing food may be helpful to help you prepare for Christmas and organise how best to put those spoons to good use.

Another great resource that I've found is these Christmas gift planners http://www.pinterest.com/pin/351632683377328016/ or http://www.pinterest.com/pin/561190803538255069/ or a Christmas Dinner planner http://www.pinterest.com/pin/414894184392845051/ . Then there's also this link to a list of good gifts for someone that has a chronic illness. And another link to what I think is the best gift/ spoonie accessorie. I've included some funny spoonie gift pictures too for giggles.

I hope you all have a lovely Christmas but I'm sure you'll be hearing from me before then.