Tuesday, 31 December 2013

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. 

Saturday, 28 December 2013

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.

Monday, 16 December 2013

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

Saturday, 14 December 2013


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.

Wednesday, 4 December 2013

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.

Thursday, 21 November 2013

Catch up

Sorry it's been a while. I've been getting lot's of R&R after my birthday a couple of weeks ago. It's been a mixture of needing to rest and not having much choice but to rest as I keep falling asleep. It's not all been bad though. I've managed to get out to stock up on Christmas books, with my birthday money and to get a few more Christmas presents. So I have been trying to use my spoons wisely. Getting out if possible.

There's been some emotional issues and stresses that have been taking their toll as well, so I've been trying to be careful with myself. Recognising that emotional and psychological excertion is just as exhausting as physical excertion. Some of the stress has really taken it's toll on my body and left it rather out of sync, so again I've been trying to be good to myself. But this is where getting out has helped too as it stops me ruminating on matters and means I can divert my attention elsewhere. So getting out has been quite important, where possible of course. It's meant a bit more time in bed but that's not too much of a hassle. And all this together has meant a lack of blogging as I try to prioritise what needs to be done, which at times can still be difficult.

Anyway, I managed to get out for my birthday, so I was made up with that. As were my family. I had a wonderful time and felt very blessed. We went to a steakhouse but because my arms were a bit weak I needed to ask for help cutting it up (from family that is.) Unfortunately though the steak wasn't as good as they usually are and I actually found it quite difficult to eat. The chewing was actually making me feel quite tired. I should have probably stopped eating it but my conscience and appetite (woo appetite) said keep going. That night, one side of my face and head felt really sore and like a burning sensation. I took some pictures on my phone to see if there was any changes in my face. Fearing that I was having a stroke. The next day it developed into more of a headache, but also in my face, jaw and neck. It wasn't like a usual headache or a migraine type, and I had no oversensitivity to the light but it was like some kind of weight on my head, pressing down. Because of the pains I found it difficult to eat and drink. So chewy food, (of course you should always chew your food though) was out and drinking was strictly through a straw. Luckily I'd already swapped my breakfasts to porrige. It was also really painful cleaning my teeth. Sounds awful I know but at least I could reason it and I was still made up that I had managed to get out for my birthday.

I've also been experiencing much more aching in my neck and arms lately. My arms have been pretty weak too. I've needed to be fed much more frequently, as in someone feeding me not just giving me something to eat. I did try with my left hand as that seemed a bit stronger but I just ended up with mash potato all over me. Again I've been being careful with my choice of food so I can try and do as much for myself as possible. I've needed my Mum to clean my teeth for me too but it's best that they get done.

On a bigger note I made a big decision in deciding to sell my car last week. I've had my car for 10 years and we have had some adventures. She was my lifeline when I moved away for university at 18, as she got me home every weekend. Oh how I hated that place! I think the amount of miles I clocked up in those few months is testement to how right the decision to leave there was. But for the past few years she's mostly been sat on the drive and only getting to go out when I had VERY good days or my Dad drove her. It was becoming far too much money for something that I wasn't using. For a long time I could justify it by thinking that I'd hopefully be up to driving again soon, but even if I were I'd need someone with me and it's not just about the driving. It's the doing what you've gone out in the car for. All together that is far too much right now. My legs are too weak to be able to manage the pedals and fatigue too extreme. Plus there is the other set of wheels, known as my noble steed or wheelchair in my life now. And thank goodness for them for allowing me to get out and about when I'm feeling well enough.

Hopefully I'll be able to get back to my travel series soon. I have most of it written so it just needs typing. Plus plenty more posts in the pipeline. But for now I'm in need of much more r&r and tlc.

Saturday, 9 November 2013

Happy Birthday to me!

He he I can't get Stevie Wonder out my head, but it's ok he can stay there. Today is a double celebration, not only is it my birthday but I'm also celebrating smashing 3000 views on my blog. Wooo!! This makes me so incredibley happy. This is just a very quick post, because I'm supposed to be resting to be able to go out later, to say that I have decided to donate some of my birthday money to the canary in a coal mine project. It's a project that is filming people all over the world with M.E and the aim is to raise the visbility of M.E. To try and enable more sufferers to be understood. To be able to say to someone I have myalgic encephalomyelitis and they might have some idea what you're talking about. Here is a link to their youtube page with all the details: http://m.youtube.com/index?&desktop_uri=%2F#/playlist?list=PLSX_kPpxAZX7uKr0d_gkQgs93Rg93xD3s

To help me celebrate my birthday and recognise that today is not the only day that I have breakfast in bed please donate $1, that's like 80p. Or help spread the word by watching the videos sharing the link or #canary film on twitter.

To donate you need to visit http://www.kickstarter.com/projects/959776320/canary-in-a-coal-mine and you can make a payment through your amazon account.

Right I best go take a nap and rest.

Friday, 8 November 2013

Some useful tips for travelling with a chronic illness: travel insurance


Travel insurance

First rule always take out travel insurance. The chances are that nothing will happen that will make you need to claim on it but you know what they say it's better to be safe than sorry. As chronic illness sufferers too we are in a more likely category that something could go wrong. For example you may be too sick to travel and need to cancel. On a basic level a good policy will also cover you for any loss of luggage or cash. Or in the event of a delay cover the cost of food or extra accommodation. It's always good to have that reassurance. So here is my tips relating to travel insurance:

* Look around for a good deal on your travel insurance. If you have access to the internet then use an insurance comparison site. Here is one that compares policies for pre-existing conditions

* Make sure that you choose a comprehensive policy that covers a range of things and has a larger medical allowances quote. These may not be the cheapest but ultimately will offer you more benefits should something happen. If you can find a policy with low excesses too then all the better.

* Note that some companies require you to telephone for a quote if you are aged over 65

* As you have a chronic condition it is advised that you take out the policy over the phone, to the medical screening helpline of your chosen company. Although some will let you do so over the internet, some from the link above for example. If  you already have a travel insurance policy, either through your bank account or a yearly subscription you will need to inform them of your condition via the phone for most companies. Because you are declaring a condition they will run you through a series of questions with yes or no answers to determine whether you can till be covered by their policy. If you want to download  copy of the possible questions, these are from the post office insurance, visit the link here
The main causes that would mean that you wouldn't be covered or would need to pay extra for your travel insurance are related to heart conditions, cancer and terminal illnesses. Or whether you are travelling against medical advise.

* Check the wording of the policy that you take out or ask the advisor on the helpline to read it out for you. Ideally you want a policy with a good amount of medical expenses and to ensure that should you not be able fly (or whatever transport you used) home that you are covered for someone to stay with you. Meaning they can claim back any additional accommodation costs or flight change costs. Some policies will also cover the cost of someone coming over to be with you in the event of an accident or illness. I think that this is important to have on your policy if you have a chronic illness, because of our obvious need for the additional support.

* It is always best to inform your insurance company of any existing medical conditions as it's always best to err on the side of caution, even if you are not likely to need to go into hospital. Let's face it hospital is the last place you want to be with ME and it's not as if they can do anything about it. However should you need to make a claim it is very easy for insurance companies to turn down that claim if they find out about a pre-existing condition. Doctors records for example or hospital appointments. I have heard of people being turned down as they have had an outpatients appointment. So it's best to be safe and most of the time it's at no extra cost.

Wednesday, 6 November 2013

Some useful tips for travelling with a chronic illness: Planning

Following on from my last post about research, today's post is all about planning for your holiday. One thing that I want to say beforehand though is that you think carefully about who you chose to go on holiday with. You will need to be with people that understand that even though you are on holiday it still does not necessarily mean that you will be able to do much. People that understand that your symptoms may flare at first with the change in activity or climate and that they may need to help you even more. You need to feel confident that you are not stopping those you are holidaying with from having a good time but that they understand that for you, you are going away to relax. So just be wary of any conflict in interests. Basically you need to feel comfortable with the people you are holidaying with caring for you. Think about what you are like on your worst day. Who would you have no qualms about helping you then? As I have mentioned, I was supposed to go away to Turkey with friends this year, but the worse my condition was getting the more I realised that I wouldn't feel comfortable with them needing to care for me. Washing my hair, or even helping me off the toilet if needed. If you all just want to get away and completely relax and enjoy some quiet time, then that's a good start. I personally find that although my parents or sister still need to care for me while we're away, that's just par for the course, that at least on holiday they are partly getting cared for too. Not having to cook and clean, or work.

 Once you have researched and booked a holiday that you feel confident and comfortable with and let's not forget excited about, then it's time to start planning. As ever with chronic conditions the rule is DO NOT DO IT ALL AT ONCE. Chances are that you have not booked a last minute holiday, as some of you know leaving the house with a chronc illness can require a lot of planning. However as soon as you book, and possibly before, you will start to get ideas about the types of things that you will need to take and all the things that you need to do beforehand. So below I have come up with some tips to help you prepare for your holiday.

* Make a check list of all the things that need to be done before you go away. 
- arrange travel insurance and inform them of my condition

- book special assistance through the airline

- order any foreign currency

- make sure that I have enough medication for my holiday. Order more if necessary.

- make a list of all the things that I need to purchase for my holidays

- make a list of all the things that I will need to pack, sort into a list for hold luggage and hand luggage

- familiarise yourself with the airlines luggage allowances, how much weight that you are allowed or the size of hand luggage.

* Writing lists will help you if you suffer from brain fog and to help you feel confident that you have everything that you need.

* If you need to purchase anything for your holiday, get them while you can or use internet shopping.

* On your list of things that you need to take remember to include anything that you use at home to help you cope with your symptoms. For example vitamins, supplements, tens machine, hot water bottle, aromatherapy oils. The more things that you have to help you cope the better.

* Aim to leave the week before you go away as free as possible, to help you reserve energy. Meaning all the things on the checklist should be completed by then. This also means keeping any social visits etc to a minimum. It also may mean that someone else packs your things.

For most of the points on the checklist above I have more information and will post them soon. I'm feeling in need of a holiday now. 

Tuesday, 5 November 2013

Some helpful tips for travelling with a chronic illness: Research

Having a chronic illness can be incredibly isolating and it can often feel as though you are not able to lead a normal life. Just visiting family and friends or going to the shops is difficult enough. So it can seem impossible to get away on holiday, in your home country and abroad. Since I have been ill I have managed to get away abroad a few times. This year I thought that there was no way I'd get away due to my condition worsening but I'm very grateful that I did so. You can read about my experiences herehere and here. Whilst away on holiday I was speaking to a woman that had MS, her and her husband try to get away abroad as much as possible. They said that it is important for their wellbeing. I really admired their can do attitude.

By having these experiences I have been able to put together some tips that I hope will encourage others to get away. Most of them relate to travelling abroad but can also be applied to travelling anywhere. I have thought of so many things that I have decided to break the tips down into a few posts rather than one big long one. For my benefit as well as yours. Then I will put them all together on their own page, like my tips for shopping.

 A huge contributor to my getting away this year was that I knew where I was going and I have become friends with the owners of the hotel and restaurant so that took away any anxiety. Remember me telling you about having to cancel my holiday to Turkey because the location was not suitable. Wheelchairs and mountains don't mix very well, nor does needing to take a bus to get to eat every night and not an accessibe bus at that. Of course I did not know that I would be in a wheelchair when we booked but I even had I not needed one I think that I would have struggled with the location. So this brings me to today's tips, which is all about the value of research. Basically research, research, research. Find out as much as you can. Therefore when you get there you already feel reassured. It is a big thing for many people with chronic pain or illness to be able to get away, so comfort and knowledge is power. Below I have put together some tips to help people with chronic illnesses get away.

Research- This is always best before you book. Find out as much as possible about where you're going and staying. Tripadvisor www.tripadvisor.com is a fantastic resource for researching your resort and hotel. Read the reviews and forums about the resort. You can even ask questions if needed. The majority of resorts worldwide have their own forums, where you can find unbiased information from people that have actually been there. If you are in a wheelchair try to find out how accessible the resort is. Remember other countries have different or no policies about access for people with disabilities. Some things to consider are:

* Does the hotel have adapted rooms for guests with physical disabilities if you need one?

* Are the doors on the rooms wide enough to fit a wheelchair? If not would you be able to manage from the door inside?

* Is the hotel in a central location, close to restaurants etc or the beach? This means that you do not need to go too far to get to them and can easily get back to your hotel if you are feeling unwell or tired.

* Does your room have some cooking facilities incase you cannot get out to eat? Also a nearby shop from which to get ingredients.

* Does the hotel have a lift?

* How accessible are all the areas of the hotel? Are there ramps?

* What bathing facilities are there? Would you be able to get into a bath? Is the shower large enough for you to put a chair (plastic of course) under it?

* Does the hotel have a bar or nighttime entertainment? If so ask for a room away from those areas.

* Does the hotel have entertianment on during the day? Is there somewhere that you can avoid it if you want quiet time.

* What is the weather like there at that time of year? Can you cope with the heat, without it triggering or worsening any symptoms?

* If you are affected by the heat or do not want to be out in it constantly does the hotel have shaded areas where you can sit No one wants to be stuck in their room on holiday, unless they really need to.

* Consider asking for a room on the ground floor (if accessible to you) they are usually cooler, which may help you sleep better.

* Speak directly to the owners. Are they helpful? It can make a real difference knowing that you are going to stay somewhere where the owners are considerate of your needs and shown willing to help in whatever way they can.

To reiterate the more you know about where you're going and staying the better as it will take away some of the anxiety of how you are goin to cope in a strange place. I hope these tips have been useful. Hopefully it won't be too long a wait until the next installment.

Saturday, 2 November 2013


Whilst I was on holiday I read a book called The woman who went to bed for a year by Sue Townsend. I picked it up thinking that judging by the title I could probably relate to it. Anyway I didn't find much similarity and whilst I didn't much like the book ( I know what it's like to go to bed for a year and it's not as fantastical as the events in the book) the reasoning behind why she went to bed in the first place is very commonplace. To give you a quick brief, not to spoil it for those who may want to read it, the woman that goes to bed takes to her bed does so on the day that her twins go off to university. She sees this as a landmark to relinquish all her responsibilities. The tasks that as a wife, mother and houseowner she is expected to undertake and instead to get people to look after her for a change.

Expectations are something we are all familiar with. Whether it's as a child and being expected to be on your best behaviour and to always try your best. To the expectations we have in our jobs and personal lives. But how much of what we percieve is expected of us is real and how much is what we believe is expected of us? Has something that we believe that we are expected to do has simply become habit. To use the example of someone that always cooks the dinner, has this become habit, something that you have gotten used to doing or are you genuinely expected to do so? Do you fear that if you didn't do something then you would be percieved as lazy or neglectful? To put things into perspective if again for example you never cooked dinner would you cause your loved ones to starve? Would it cause an argument? These are all things that can run through our minds. Irrational things but things that keep us in the habit of doing something.

One trick is to learn where the expectation that you feel stems from. Or from whom it comes from. Could it be stereotypical or gender related? Remember in my post about personality, in particular type A personalities I spoke about how it appears many more women develop ME than men and how this can be down to the amount of roles that women take on. Like the character in the book for example. I have heard many 'older' women with ME say that some of their expectation stems from their own Mothers. If they do not have a meal on the table for when their partner comes in from work then they hear their mothers voice saying that that is part of a wifes role. Of course it can be applied to many situations. And can be built upon. The more you do something because you feel you are expected to do so the more that you are expected to do it. What we can often find though is that a lot of our expectations stem from within ourselves. We live in an age now where we do take on many roles. Where we can get information and answers quickly. And we want them quickly because we can't afford to waste time. Time can mean money. This is all particularly true if you have a type A personality. You can literally become your own worst enemy with the things that you expect of yourself.

But when you become chronically ill what happens to those expectations? It can be difficult to no longer do the things that others have become used to you doing. That you have grown accustomed to doing. The fear that people will think that you are being lazy. That you don't work so you should be able to cook, clean or pick the kids up from school. That if you don't do it no one will. Or they won't do as good a job as you would have done. All that has to somehow become tolerable. And while it is so easy to think that you are letting your standards slip and even being disgusted with yourself, thinking like that can be dettremental to your health. Somehow you have to learn to let things go and let others do things for you. And to get them accustomed to the idea that they need to do much more for you. So that you can just focus on getting through the day as best as you can. But it can be demoralising, heartbreaking even. Especially if you were highly independant and active before you became ill.

I still on occasion have trouble dropping off to sleep because I feel that I have not done anything that day. Like somehow I have not fulfilled some quota of activity. Asthough to warrant sleep and signal the end of the day so much needs to happen before then. I realise that this is a part of my type A personality and I know that theres a chance that I will always have similar feelings. Afterall I'm not sure if I would like to be completely at home with the idea of 'not having tried.' I know I must change those expectations on myself. Learn to say "you did the best that you possibly could within the circumstances of today." And not chastise myself if that is only to get out of bed once that day. On the other hand I know that I am very lucky to be surrounded by people that will do a lot for me, without question. That when I can do things for myself that they realise how much of an achievement it is for that day and accept that tomorrow I may not be able to do it and therefore they don't place that expectation on me. Yes, given the circumstances I think that I am a lucky bunny.

Monday, 28 October 2013

Spoons I need spoons!

Making appointments when you have a chronic illness can be difficult. It can be even more difficult keeping them. This is because our conditions are so unpredictable and we don't know from one moment to the next how we are going to be. This means that we often end up needing to cancel appointments, sometimes at the last minute. Even visits to the doctors, which I know sounds silly but sometimes although we need to go to the doctors there is just no way of us gettin there. If you have an understanding doctors then it's not too bad because they have more of an understnding of the condition.

Last week I was supposed to go to the dentist. I haven't been able to go for a while because I just haven't been up to it. But also because there is a set of stairs there that are really steep and there's just no way that I would have got up them. They do have a surgury downstairs though that each dentist takes in turn to do a surgury for people that cannot get up the stairs. So because these are only at certain times it was even more that I needed to book a specific time.. Whilst on holiday I chipped the cap off my front teeth, so there's yet anther reasn to go to the dentist. I have even made sure that I told them in advance that that needed doing so that I didn't have to make another appointment. 

However come the day of my appointment and I was in complete zombie mode. I should have known that I would not be going when I woke up and needed help to eat my breakfast as my arms were feeling very weak. After that I went straight back to sleep, into a deep sleep. About an hour before my appointment my Mum came in to help me. Or to try and help me! I just couldn't fully wake up at all. It was like when you've have had a general anastheatic and that moment just before you come round, when you can hear voices and are roughly aware of the mask on your face etc but you are still under the influence of the anastheatic. That is kind of what I was like. I managed to sit up and my Mum got me dressed but I couldn't do anything to help. I was like a rag doll as I get flopping and I couldn't keep my eyes open. I was falling asleep sitting up as my Mum was trying to wake me. She was shaking me and shouting at me. I'm surprised she didn't go and get a bucket of water to throw on me. But it wasn't working. I could vaguely hear her shouting and shaking me but I just couldn't do anything about it. My eye just wouldn't open, or when they did they would soon be closed again. I don't know how my Mum managed to get me dressed. I'm just glad that she realised that there was no way that I was going to get down the stairs. I probably would have two broken legs by now. At least it happened when  I was on my bed. Not in a supermarket as has happened a few times. Not that my Mum was trying to get me dressed in a supermarket of course. There were just no spoons at my disposal. When I came round I was confused that I was fully dressed.

So obviously we've had to make another appointment. Fingers crossed I will actually get there. In other news though I have actually managed to get out of the house three days in row, which has been unheard of other than on holiday. I've done nothing wild, just an outing round a few shops as my Mum wanted to take a jumper back and I arranged to see a friend that was up visiting her Mum this weekend with her son that has just turned one so I needed to go get a present for him. Whilst out in the shops I made the most of it and been super organized and bought some Christmas presents. I know it's early and usually I dispair of seeing Christmas decorations/ gifts before Halloween but I am makin the most of being able to get out as the earlier episode shows you never know when you are not going to be able to get out. So it's best to be prepared. Of course when you don't have to be somewhere by a certain time and can go 'when you're ready' it is easier but as ever nothing is guaranteed.  

I'm feeling realy grateful that I've been able to get out. It's been a bit of a shock to be honest. A nice one though and of course I've needed my trusty steed with me. Now though I'm just planning on resting up properly for a few days. Don't want to push the apple cart too much.

Sunday, 20 October 2013

Some useful tips for shopping for food with a chronic illness

As you can tell by the new look I have been doing work on the site. I have now added a page too for all my useful tips. In doing so however I discovered that one of my posts about shopping for food along with some useful tips seems to have vanished into cyber space. Or I accidentley deleted it, which is probably quite likely. Luckily I had written most of the post in my notebook so I can bring it to you now, again.

Food shopping is an activity that requires a lot of effort and is an area where many sufferers of a chronic illness, dissabilty, the elderly, people with an injury and sometimes pregnancy require help. Especially if they live alone. Again this is where I am lucky to live with my parents. Food shopping when you break it down into elements is actually a convoluted process that requires mental, physical and sometimes emotional (oh no they've ran out of my favourite biscuits) effort. In other terms it requires a lot of spoons. Think about it. Firstly you need to get there. When you do you could possibly take ages looking for a parking space, that could leave a longer walk to the supermarket. Once inside you push a stubborn trolley around whilst negotiating old age pensioners, errant small children, staff packing shelves and us annoying folks in wheelchairs (sorry). Then there is the physicality of bending, stretching, reaching, lifting and twisting to put items into your trolley or basket. As you progress through the supermarket your trolley or basket becomes heavier making it more difficult to push or carry. Then when you get to the checkout you have to take all your items out, then put them into bags, then back in the trolley if you are using one. Walk back to your car. Remembering where you parked and lifting everything once more into your boot. Going home. Getting the shopping out of the car. Unpacking the items and putting them away. It makes me tires just writing that (twice now!) and thinking about it. It is a task that requires a lot of effort and one that can tire out the healthy amongst us.

So for anyone with a chronic illness it's certainly like climbing Mount Everest ten consecutive times. Therefore it is definitely an area where sufferers require help if needed or wanted. Your GP should be able to advise you on any services that are available in your area to help people that have difficulty in accessing food, as well as your local council. The most common service being meals on wheels. Below I have quoted some information about the Royal Voluntary Services meals on wheels scheme. Their website can be found here.

   'The Royal Voluntary Service is the original meals on wheels provider. We deliver two million meals a year to people who have difficulty with shopping, carrying food home or cooking for themselves.'

   'Today the service could be more accurately described as 'meals with care.' Our drivers are instructed to ensure that the older person is safe, well and secure.'

   'Our home delivered meals service provides friendly social contact for those who may be confined to the house.'

   'In some cases, once the driver has delivered a frozen meal one of our volunteers will come over and heat the meal up for the older person and stay to keep them company.'

Other useful websites for frozen meal delivery services are:

Below I have made a list of tips to help sufferers of a chronic illness, their carers or anyone that had difficulties shopping for food.

* Is there someone that could go shopping for you? A neighbour, relative or friend

* Can someone take you to the shops? Or could you get a taxi?

* Internet shopping- If possible time the delivery so that someone can be there to help you to unpack and put away the items.

* Find out what assistance the supermarket has? Mobility scooters, wheelchairs, trolleys for wheelchairs, disabled parking bays, toilets

* If you use a mobility scooter or a wheelchair is there someone that can help you get things off high or low shelves or from freezers for you?

* Speaking of freezers, make sure you wear layers whilst shopping so that you don't become to cold and burn more energy as your body tries to keep warm.

* Always go to the same shop, where you know the layout and the staff, that way you know where everything is and you won't waste energy by searching for the things that you need.

* Always write a shopping list beforehand so that you remember what you need to get. This will save energy if brain fog hits and you are wandering aimlessly trying to remember what you needed to get and may save you another visit.

* Does the supermarket have a cafe? You may wish to do your shopping in stages rather than one big push. A rest and a drink or healthy snack may help you.

* Weigh up whether you are best doing a big shop less frequently or smaller shops more often? Which suits your energy and stamina levels best.

* Trolleys tend to be better than baskets because they distribute the weight better, even if only have a few items.  Using a higher trolley will also prevent you from needing to bend as far.

I hope you have found these tips useful, If anyone has anymore then please comment below. I will add these tips along with the ones on cooking and preparing food on a page so that they are easy to find for future reference.

Friday, 18 October 2013

Post holiday blues

I've just been watching BBC news and one of their top stories was about elderly people being vulnerable to lonliness. That loneliness can be as dangerous as smoking and drinking. The news piece for me was actually quite difficult to watch, of course not just from the prospective of our elders being lonley but for those of us suffering from chronic pain and chronic illnesses too.

Since I've been back from my holiday I have been taking caution. Knowing that my body is suffering from the travel and not wanting to push it too much so that I end up feeling worse. Of course I knew that this is what I would have to do. Because I have been resting and taking care I haven't felt too bad. Stupidly I ran out of tramadol last Friday and hadn't realised until then, so I had to suffer the weekend without any. And indeed I did suffer. My fibromyalgia pains have flared again, where just the slightest touch has caused a crazy amount of pain and even tapping the screen on my touch screen phone was painful, as well as holding my phone.

But mainly since I have been back I have felt really sad and somewhat lonely. On holiday I was conversing with different people everyday. Okay, I wasn't out and about much but I was 'out' every day. It helped that I knew the family that owned the hotel where we stayed and the family that owned the restaurant where we eat every night, so there was always friendly conversation and lots of laughter. I've also been learning Greek to be able to talk more with them, even though they speak perfect English. On holiday I spoke to people of all ages, from a couple in their 70s to a cheeky Greek 2 year old. People that I had met last year and people that I simply met sitting around the pool or in the hotel bar. Just striking up conversations about a book they had read or the pool gossip was mostly about some noisy guests.

I don't know if the change has made me feel worse but I definitely have not been feeling too chipper. This is why I am grateful to have my wheelchair because it means that on better days I can get out. I don't have to be stuck inside. Of course it can make you feel self conscious. You wonder what people are thinking. Still though the type of getting out that is done with a chronic illness is not always conducive to being that sociable. For me it is usually to get something from the shops. Or to socialize with family. I very rarely meet new people.

Again I think it is the emotional and psychological side or outcomes of being chronically ill that can be the worst to deal with. You can't take a tablet for feeling lonely as you can for pain. Yes, there are anti depressants but they don't stop you feeling like you're missing out. The easy solution that you would say to someone would be to just get out. Join a club. Go Salsa dancing as it were. But when you can't always guarantee that you can get out it's so difficult. Even talking at length can be tiring for many of us. There are many ME support groups but somehow I feel that you need something that is away from your illness. You want to be surrounded by people that understand the difficulties you face but not constantly be reminded that you are unwell. Such a catch 22.

One thing I will say is that I have met some wonderful people on Twitter that also have ME. It's nice to be able to talk to people that understand and give and recieve support. It has certainly been a lifeline. Perhaps I need to look into more things that I could do. When I'm feeling a bit more with it though and can do a bit more than blog, read and watch tv.

Thursday, 10 October 2013

Making up for being able to eat ice cream

Not sure why some of the dates of my posts are coming up earlier than they were actually published. Strange. Perhaps it's with using mobile app and it goes from the date I start writing a post? Anyhow, looking back on last week, when I was away in Kos I am made up with how well I did. Further proof that I do need to move abroad. Or more accurately to Kos. It is after all the island of Hippocrates.

Of course I was very weary of how much activity I could do and was being cautious. Afterall a 4 hour flight is a long time. If I'm honest probably too long. I was worried about it for a long time beforehand. As I have said before though I weighed it up with how well I knew the place and people and knew that it was a really relaxing place. Plus I probably would have been so upset not to have gone. But being wholly honest it was a long time. Probably too long. Especially when you're terrified of flying as well.

On the plane I was sat for the majority of the time sideways with my legs up on the seat. This was great for the legs but that night and the next day I had loads of pains in my side. This was due to leaning against the arm rest. Unfortunately the arm rest by the window doesn't lift up. I did try to cushion it with my coat but clearly it didn't do much cushioning. Before I went away I was taking approx 4 paracetemol and 4 tramadol a day but because of the increase in pain I was taking more. Luckily I was prepared for this. Sometimes with ME you really do prepare for the worst. You can often be pleasantly surprised then. 

My mistake though was not taking a hot water bottle. Yes, I know that sounds ridiculous going to a hot country. Not usually top of the packing list alongside your bikinis. At home I live with a hot water bottle literally strapped to me. I find heat to be a great pain relief and comforter. But with going away somewhere hot I thought that the natural heat should be enough. But by the end of the day after the flight my sides were so sore and tender. I was cursing leaving my bottle at home. But now comes the part where knowing the people comes in very very handy. I asked the lady that owns the restaurant where we eat (right next door to our hotel, convenient but also scrummy) whether they had hot water bottles in Greece and whether you could get them in the giant supermarket. She went one better and went downstairs to were they live to get one for me. That is what I call customer service.

Furthermore on the excellent customer service front. To get into the inside part of the restaurant, where the toilets are, there is a single step. Any time I needed to go inside the owners or waiters would always come and help me up. Even when my Mum was there helping. One night the owner came out with a tape measure and measured the width of my chair and another ladies (she had MS). Why was this? Well because he wanted to build a ramp for us to get into the inside. Just wonderful, wonderful service. It really touched me. I hear that in Greece now all the new buildings do need to have easy disabled access. So they're catching up on the pc front. Unfortunately it didn't arrive until our last night but at least they have it now and what great customer service.

Whilst I am on the subject of the restaurant and to explain the title of this post, according to the scales I have put on a stone on holiday! I haven't noticed any changes in my body or clothes which is strange given what the scales say. Perhaps they are wrong. Not that I particularly want them to be wrong as the pre holiday figure was shockingly good. Anyhow I'm not upset by it. Why? Because it was fantastic to eat 3 meals a day for the whole week. Something that hasn't happened for quite some time. As I have said before this is majorly an issue with sleep. More apptly an erratic sleep pattern that often disturbs my eating times. However whilst I was away I got into a good routine. Usually it was similar to this:

8.45 wake up

9.30 breakfast

10.00- 13.00 sunbathing, reading with naps after 20 minutes of reading

13.00- 14.00 lunch

14.00-16.00 inside nap

16.00- 17.30 sunbathing, reading, maybe a trip to the amazing duty free supermarket

17.30- 18.00 shower (sit down), get ready to go out

18.45- go out for dinner (in restaueant next door)

18.45- 22.00 dinner, talking

22.00 reading then sleep

Of course there was exceptions. A later night to celebrate my Dad's birthday. And and early night on the day when I managed to walk to the restaurant. Coinicedentally that was also the day that I woke up disorientated and accidentally took the amitriptiline that I usually take at night in the morning. Oopsie! I only realised I'd done this a few hours later too and only knew for sure by counting the doses that I had left. And generally just dependant on my fatigue and pain levels and trying to do what was best for me. But all very compatible to eating more healthily. Well maybe healthily might be pushing it a bit. Most mornings I had a croissant for my breakfast because it was the least fiddly and I didn't have to use a knife and fork to eat it. I felt a bit embarrased about needing to be fed in public. Drinking tea through a straw was odd enough to explain. My arms were more achey in the  mornings so an easy breakfast was helpful and less painful.  I love their Greek breakfasts (no not coffee and a cigarette!) Boiled eggs, toast and honey but that was far too much arm faffing.

 I did enjoy some yummy desserts too, not for breakfast though. Although my sister told me off for having a chocolate and banana crepe for lunch. Hey I was on holiday and wasn't snacking during the day. I mentioned in my post on healthy eating that ice cream gave me stomach problems. Yet I don't have an overall dairy intolerance. I have found that some ice creams don't bother me though and that seems to be the case with Greek ice cream :-P haha. There were just so many yummy combos that I had to test my intolerances. Please note the 2 spoons in the photo too ;-). I am glad though that my stomach decided to behave. Always good when you don't have something else to contend with.

The only other contributor to my symptoms was the cold wind that we had for a few days and nights. In the day it was okay as the pool area was shelteted from the wind and was actually quite warm. You could sunbathe in your swimming costume. It was just as soon as you went up the hill to the street that you needed a fleece. See a coat might not have been much good for cushioning the  armrest but useful against the bitter wind on our travels next door. This change in weather really effected my myalgia pains. I felt a bit like the tin man.   

The colder days didn't really lend themselves to a dip in the pool. The pool is generally quite cold as it is anyway. However earlier on in the week I did manage to get into the pool. Not to swim mind. That would have been too much energy and no one wants to run out of energy in a swimming pool. So I got someone to put a lilo by the ladder then I sat down on the top of the ladder and pulled the lilo in front of me so that I could just flop onto it, keeping my legs in the water. Then to get out I somehow I managed to get out up the ladder with the lilo. Hard to explain, funny to watch.

The flight home was interesting. We got onto the plane in the lift using my wheelchair. On the van/ lift they had a small a wheelchair that is able to go down the aisle of the plane. I didn't use it though as I thought I would be okay with boarding the plane at the back, closer to the special assistance seats. This was true but unfortunately this time there was still a lot of people stowing bags etc. The plane was also fuller and there was people sitting in the special assistance rows. Luckily though me and my Mum did get an extra seat so that I could put my feet up. Otherwise I might have struggled more. 

I was already quite scared before the flight. Ever since that bad turbulence in May I have been even more scared of flying. Again it's the lack of control and not seeing ahead I think. You'd think for someone with ME I'd be used to not to having control. But when that's also 35,000 feet up in the air it's fear upon fear. 

Usually I'm not too bad on take off. I can look out of the window and enjoy the aerial view but this time as soon as the plane left the ground that was the last thing that I wanted to do. I felt like my head was going to explode and like their was a huge wait upon it. I also felt quite nauseous and hot. The take off was quite steep and at an angle too, so I don't think that helped. My instinct was to shut my eyes as I tried to take deep breaths but that just made things worse.I tried a technique I learnt when I was suffering from frequent panic attacks, which was to cup my hands over my mouth and nose and take a few deep breaths. This means that you are breathing in the carbon dioxide that you have exhaled and somehow slows down your breathing. I don't know the science behind it but it does help. Once we'd leveled out the pressure in my head disapated a bit but I didn't feel much better. I was having frequent hot spells too. I think I had used up most of my packet of face wipes by the time we landed to try and keep cool and help me feel better. I was tired and couldn't relax as much so I suffered quite a lot. I just wanted to burst out crying. Well really what I wanted was to be off the plane. The not so bad thing though was that I put my cushion from my wheelchair against the armrest, so no crazy pains in my sides. 

So there we go. My time away. I'm so glad that I got to get away and also that I didn't suffer too much whilst there. It was lovely to relax, read and talk to lots of lovely people. It's nice to relax and enjoy being sociable everyday. I misd that back at home. And thank goodness for special assistance for making things even easier. I just wish I didn't have to fly to get there. I am going to work on putting some tips together for going away when you have a chronic illness. Any tips that anyone else has would be greatly recieved. And any tips for nervous flyers!