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Letting Life Get in the Way

Letting life get in the way when you have a chronic illness...

I’ve had to take a break this week from my pledge to post every day. I’m going to be alone for two weeks, so I’ve needed to prepare for that time, in case I’m not well enough to go out and buy food or run errands. I love writing and I spend much of my time working on my sites, but I’ve decided to use my meagre energy reserves on spending time with loved ones. I hardly get to see friends and family, and at this time of the year, as people have time off work, there are more opportunities to socialise.

So this weekend I’ve planned to meet my cousin and her teenage son. They’ve invited me to go to a gallery with them. I’m not so great with the walking about, but I am still looking forward to it. I may have to pull out my trusty walking stick. Then I have time to rest before Christmas Eve, when I will be joining my whole family for the day as that will be our Christmas. In the week after Christmas I hope to be well enough to visit extended family. Another cousin had a baby back in September and I’ve wanted to go and see her for a while now. My two dearest friends also want to meet me at some point, but I have yet to work that in.

I’ve hit my stride now with gluten free food at home, so I hope that eating out won’t present much of a challenge. My family are aware of my restrictions and my dad, who will be cooking, even called me to discuss what I could and could not eat. The problem will be with restaurants. The cousin I am seeing this weekend also has things that she can’t eat, so it’ll be interesting finding somewhere that suits both of us! But this is London, if we can’t find something here, then we won’t find it anywhere.

Anyway, I just wanted to let you know that I’m OK, and have not had a huge relapse, I’m just letting life get in the way for once! In case I don’t post again before Christmas – I hope you all have a great one, no matter what you end up doing. Please remember to rest when you can and don’t over-schedule! I will also practice what I preach…promise!

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Christmas Shopping Aftermath

Christmas Shopping Aftermath

This weekend I proved that even when we know something will be bad for us, we go ahead and do it anyway. Two weeks ago I wrote a series of posts about how to get through Christmas planning and buying. The advice in them was sound, except I didn’t practice what I had preached. On Saturday I ventured out to do some Christmas shopping. In my own defence, I needed some items that I really couldn’t order as the store I visited doesn’t have an online store, also the reason I chose to go on Saturday (a day I usually avoid the shops) is because it was the only day I could get someone to go with me to carry my shopping.

I was really lucky because I went out early and it wasn’t as busy as I was expecting it to be. But the post-exertional malaise has kicked in full force. Yesterday I was achy and fatigued, but as is usual, today I feel even worse. So as soon as I have this written and posted I’ll be heading back to bed.

The lesson of this story is that no matter how good your intentions are, this is the time of the year where you may be forced to do more than your body can handle. Try to get as much help as you can and leave yourself some time for rest and recuperation afterwards. I would be feeling much worse if I hadn’t had someone help me with my shopping trip and I rested all day yesterday and I plan to do the same for the rest of today.

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Christmas Humour

Santa Pug and other Christmas HumourRight about now, with two weeks left until Christmas, I’m sure there are more than a few frazzled folk out there. I’ve not had to send any cards or buy any more presents and I’ve been more stressed this year than usual! I guess it’s the reason I’ve been working so hard lately. But yesterday I decided, I’d had enough of the stress and I was looking at some funny Christmas pics. I can’t be the only one feeling like this so I decided to share some of the Christmas humour with you. Put down that wrapping paper, stop searching Amazon and just take a break for a minute! Please note none of the images are mine but you’ll find the credit and terms of use links at the end.

Christmas Credit Crunch and other Christmas Humour

Occupy North Pole and other Christmas HumourWe all spend too much at Christmas (yep, even people like me) but I loved ‘The Credit Crunch hits the North Pole’ especially when I read the story behind it! The illustrator sent this out as a Christmas e-card to his friends and family. I guess the implied message was “If you’re wondering what happened to your Christmas presents, things in the North Pole are a mess right now!” Then again I guess they realised that when they received an e-card.

Original Bad Santa and other Christmas HumourI hope there aren’t any children reading (who am I kidding, they’re all on YouTube, not on some old fogey’s blog).

I’m sure Santa’s reaction to any kind of ‘Occupy’ scenario in the North Pole will be this. Not that much different to the reaction from our own governing bodies. However, I have to admit to having at least some sympathy for the man in the red suit! Now I’m thinking that I called him Santa…growing up it was always Father Christmas, not Santa. Does anyone in the UK use the name Father Christmas anymore? I’ll have to ask my sister how she refers to him when she tells that old story to her son.

A Christmas Story and other Christmas HumourI’m not sure if this kid is happy to have received his gift or like the majority of people totally bummed out. Maybe it could be used as some kind of Rorschach test and your answer would reveal something deep about your personality. All I know is that it made me fear my nephew’s reaction to the gift I got him. After his reaction to his birthday gift, I guess this kid’s enigmatic look is something to hope for.

Last Minute Xmas Gifts and other Christmas Humour

Well, I better let you get back to the buying or you’ll be in the same state as this guy!

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Santa Pug;
The Credit Crunch hits the North Pole;
Occupy North Pole;
Original Bad Santa;
A Christmas Story;
Last Minute Xmas Gifts.

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My First Gluten Free Christmas

Gluten Free Christmas

I went gluten free back in October and you can read about my reasons for doing that in Coeliac Disease, ME and me. I have actually had gluten free Christmases in the past, but I don’t remember anything about them and this is probably because I was cooking and able to make the changes very easily. This year however, I may be spending Christmas where others will be cooking and there are certain problems that arise with that scenario.

Early on, when I first became ill, I experienced a lot of guilt associated with being a burden on others or not being there for others and this is something I’ve mostly dealt with and come to terms with. But then today I felt a twinge of that guilt again, and it really took me by surprise. I know what a huge job cooking a lavish meal for a group of people is, and I realise it is because I don’t want to be ‘that person’ who makes the cook’s job even more difficult. This is totally ridiculous, of course. I can’t help that I have to eat gluten free, and if people still invite me when they know about my dietary requirements, then obviously they’re more than prepared to cook for me. Also, I’m known for always ending up in the kitchen wherever I go, so I can also help rustle up some gluten free alternatives.

I’ve been thinking about the different components of Christmas dinner and my main problems will be with sauces and if they’ve coated things like the roast potatoes in flour. It’ll also be a good idea to take some brand new wooden spoons and maybe a cutting board along, to avoid contamination.

The worst case scenario will be if they tell me something is gluten free, but it isn’t. It sounds like a mean thing to do, but the motivation for such a lie is usually the opposite. They want to avoid any awkwardness about the fact that you can’t eat something everyone else is. Seriously though, if someone just told me to avoid certain dishes, I wouldn’t feel bad and appreciate being told so much. There are a few people who don’t believe you have a real allergy, intolerance or dietary need and will just serve you something you specifically can’t eat. That is just not cool and can actually be very dangerous with people ending up in hospital.

Do you have any tips or advice for people like me facing their first gluten free Christmas?

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Socialising at Christmas: Things to Consider When You Have ME

Socialising at Christmas: Things to Consider When You Have ME

As I mentioned in my first post in this series, one of the things that most people love about this time of the year is spending time with friends and families. But that’s not always easy to do when you have a chronic illness like ME. Two years ago I decided to spend Christmas day alone, and that was the first time ever I had been alone at Christmas. I really wanted to do it as I just didn’t think I could physically handle Christmas that year. I’m glad I made that decision, but even then, I felt lonely on the day because I felt like I should be with my loved ones. Last year I was with my parents for Christmas and honestly, it was so difficult.

For many people going home for the holidays is something they really look forward to, but when you’re ill it can be so trying. I’ll use last my Christmas trip home as an example. I may live in central London, but my building and my street are very quiet and I spend a lot of time alone. I don’t watch television, so it’s not a constant noise in the background and I don’t spend much of my time talking or listening to others talking. For the first few days I was at my parents’ house, I was just overwhelmed with the noise. My dad has the television on from morning until night, and then everyone is talking to me and I could feel myself phasing out and just not tracking what was being said because it was too much. Also they live in a very busy area, so I could hear the neighbours and their kids. I remember after a couple of days I was just collapsed on the sofa.

Then there are the family dynamics that can be trying. I honestly want to spend as much time with each family member as I can while I am there and they all want to do the same with me. But when some family members are not talking to others or don’t want to be around other people, it really puts me in a difficult position. Eating Christmas dinner separately in two different rooms just makes me feel so horrible and anxious and defeats the whole purpose of spending Christmas with the family. I think this year I may make it a condition that unless everyone can be civil to each other, I’m not going to bother going, but that’s if I decide to go.

On a less personal note, if you happen to be working, there can be the temptation to join in with office drinks and Christmas parties. I was working in 2010 and I did go to the Christmas party, but I left long before everyone else did. Even though I was relatively well at that time, I was very aware of the fact that I’d have to pay for my exertions. The same goes for drinking alcohol; alcohol can have such a horrible effect on ME sufferers, that most of us abstain, but it can be easy to indulge at this time of the year.

What are the problems you have experienced socialising at Christmas?

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Don’t Get Bamboozled by Gift Buying At Christmas

Don't Get Bamboozled by Gift Buying At Christmas

Gift buying at Christmas hasn’t been a real issue in my family for many years now. We’re all fortunate enough to be able to buy ourselves whatever we want throughout the year, so not only is buying gifts for one another a complete nightmare at Christmas, but an exercise in futility much of the time. What we decided to do was save that money we’d spend on gifts and just spend it all on food and drinks that we could all enjoy together. This idea works great when you’re all adults, but for kids it’s a different story. I’m not so sure they’d appreciate the real Italian panettone one aunt brought over, and especially not the aged single malt whiskey grandpa treated everyone to. So there will always be some gifts that need to be bought at Christmas.

For people that are chronically ill, this is also the time of the year where we’re able to show our appreciation for those that have supported us and our illness throughout the year, be they carers or friends and family members. Here is what I would suggest:

  • It can be easy to be overwhelmed with wanting to buy the perfect gift that reflects just how much the receiver means to you. This is especially true if you want to thank someone for the way they have cared and supported you through your illness. Don’t worry too much; they obviously understand how ill you are and will appreciate the very fact that you got them anything and you can also include a note with the gift with just a few words expressing your gratitude. This will elevate the value of any gift card or bottle of wine you buy them.
  • Don’t wait until the last minute to do your Christmas shopping! That’s good advice for everyone, but when health and energy are not something that can be relied upon, you probably won’t be able to rush out on Christmas Eve and pick up something last minute. Write out your gift giving plan well in advance and buy what you can early.
  • I don’t know about you, but I cannot handle crowds. Braving the shops at weekends let alone during the peak of Christmas shopping is just not something that I can even contemplate. This is where the internet is your friend! You can buy just about anything online and many places even offer free delivery and returns, so do your shopping from the comfort of your own home. I’ve had my nephew’s Christmas gift in the cupboard since October.
  • While some people are just hopeless when it comes to wrapping Christmas presents, the chronically ill can have real problems with the required dexterity and energy to get the job done. Take advantage of any offers to gift wrap items before they are sent out. If you don’t want to do this, because you’d like to inspect them first, skip the usual wrapping paper route, and just loosely wrap in coloured tissue paper and give in a festive gift bag or box.

Good luck with the gift buying – hopefully you’ll be more or less done by now and won’t have broken the bank or your body with the spending and effort!

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ME Sufferer’s Christmas Card Dilemma

ME Sufferer's Christmas Card Dilemma

You probably don’t think that something as simple as whether or not to send Christmas cards could be such a dilemma when you have ME, but that’s exactly what it is. Up until a couple of years ago I made every effort to buy, write and send cards to friends and family, and this was something I loved to do. But gradually it began to seem like a chore more than a joy. Just writing even a few cards was so difficult both physically, as I get joint and nerve pain in my hands and arms, and mentally trying to concentrate on getting the job done. I remember one year I was in such a brainfog that I had problems keeping names and addresses straight; a waste of perfectly good cards. Also, I stopped working, so the cost of buying and sending cards just seemed like such a ridiculous waste. My main issue was that I don’t like to do anything that is not done with love, and I had really stopped feeling any love in the act.

It’s been at least two years now, and I’ve just stopped sending any cards at all. I’m totally fine with my decision now, but it was difficult at first and I felt guilty. Another knock on effect of this is that many people have stopped sending me cards and I thought that would have made me feel bad, but I actually feel good about it. Some people may have stopped because if they don’t receive, they won’t send, and that is fair enough. But I know a number of people have stopped sending Christmas cards because they think it is a waste of paper and money. I read an article yesterday where the guy worked out how much money he spent on buying and sending cards and he donates that to a charity each year. Good for him.

The only cards I do receive now are from other ME sufferers, who totally understand why I don’t send cards. The one I received yesterday was from my friend who is unable to use her hands anymore due to RA. If you are like her and don’t want to give up Christmas cards and can afford it, then do what she does and get your cards pre-printed, similar to what companies do with their corporate Christmas cards. Or if you’re super organised, start writing out your cards weeks before December, so you’re not rushing to do them all in one sitting.

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The ME Nightmare Before Christmas

The ME Nightmare Before Christmas

I started this week having to face the reality that December is upon us and I’m going to have to make some really uncomfortable decisions about my plans for the holidays. My sister invited me to spend Christmas with her and her family several weeks ago, and I did say yes to her, but seriously at the time I hadn’t even really thought about it. Then my mum asked me this weekend if I was planning on going home and I told her I hadn’t thought about it. But yesterday all I saw were messages about people putting up their Christmas trees and I even received my first card in the post, and I know I better start deciding what I want to do. It’s strange because I had a really good day yesterday, because I was really enthusiastic about the plans and ideas I had for my blog and I was teeming with ideas. Plus I felt like I’d had a really productive day. Then in the evening the Christmas blues set in.

It Wasn’t Always This Way

As anyone in my family will tell you, I was the embodiment of Christmas spirit before my illness got the better of me. I loved planning and cooking Christmas dinner, spending time with my family and especially all the socialising in the work place at this time of the year. Christmas day, I’d be in the kitchen, with my Christmas CD playing and just enjoying myself to the max. I’m an Atheist so Christmas has never had any religious significance for me, but I love the more relaxed atmosphere and even the chaos of shopping. I lived a very hectic busy life, so Christmas was always a fabulous time for me to let down my hair and just enjoy myself. But that all began to slowly change as my energy levels dipped.

Christmas Can Be A Nightmare When You’re Ill

“It’s the most wonderful time of the year” or so we’re lead to believe, but the reality is far from it. The shopping and socialising can leave healthy people ready to collapse by the time Christmas day rolls around. For the chronically ill, these pose real challenges and can cause relapses which take months to recover from or even mean permanent health issues. I’ve totally trimmed down my activities around Christmas for this very reason. I wanted to write about some of the challenges I’ve had to deal with related to Christmas, and that I know other ME sufferers have to deal with every year. Rather than list them all in one very long post, I’ve split them up into individual posts for each topic.

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How I Survived Christmas and the Movies That Helped!

How I Survived Christmas...ME/CFS

It’s the evening of the 25th as I write this, so Christmas is not quite over, but this will be my last Christmas post of the year. The last couple of days haven’t been great so I was expecting today to be extra depressing, but I’ve actually had quite a good day.

I woke up this morning and just lay there for ages listening to the rain. It was lovely and peaceful and I can’t remember the last time I was so relaxed upon waking. I chatted to my sister Nik for a while via Blackberry messenger; she’s been very sweet and made herself available while I’ve been in my Christmas slump (Thank you Sis – Love you!) and then around 1pm I took a nap…for several hours. So when I woke up in the afternoon, I felt quite rested and was ready to think about food and what I was planning to do for the rest of the day.

I spoke to my parents and then made myself some lovely pasta with salmon (Merry Christmas Baby!) and knew that I was going to indulge in some of my favourite Christmas movies, but before that, I needed some Stewie Griffin.

Family Guy: Road to the North Pole

This is not exactly a movie, but it is a double length episode of one of my favourite shows. ‘Family Guy‘ is the television equivalent of Marmite and I love it, and this is one of the best episodes. After being snubbed by a mall Santa, Stewie decides to travel to the North Pole to kill Santa. But when he gets there with Brian he finds that all is not well with the big man or his helpers.

I’m a huge fan of all things Christmas, but combine that with a ‘Road to…’ episode of Family Guy and what is there not to love?

The Holiday

One Christmas when I was very ill, I watched this movie every day for a fortnight when they first showed it on Sky Movies. I still love it. I can’t even get specific about what I love about this film, because the truth is, I just love everything about it.

Back when I first watched it, I loved the fact that it was a Christmas film, but not Christmas-sy. I dreamed of being able to jet off somewhere and find a new life, a new love at that time in my life, and watching ‘The Holiday‘ was perfect because it allowed me to do just that with Amanda and Iris. I love the main female characters played by Kate Winslet and Cameron Diaz; their very definite strengths and weaknesses and how very funny they both are. As usual, Nancy Meyer delivers in this area. The guys are wonderful; Jude Law is so very English and Jack Black, whom I adore anyway is perfectly sweet and funny. Then there is the unexpected treat of Eli Wallach’s character and Hans Zimmer’s music. This movie is chocolate for the soul! One of the best parts is that a guy could enjoy this too as having a Y chromosome does not interfere with the entertainment factor.

This Christmas these two got the job done, so I did not get around to watching ‘Miracle on 34th Street ‘ or ‘Scrooged‘ but I love them as well. So I finally got into the Christmas spirit with the help of some animation and acting.

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Christmas Alone

Christmas Alone - ME/CFS

This is my very first Christmas alone. The common idea of Christmas is one of families getting together, of spending time with loved ones, not of being alone. But for whatever reason, there are plenty of people that spend Christmas alone. I actually chose not to attend the family gathering this year, and at the time that I made that decision, I was really happy about it. I believe my exact words were “After 36yrs, I deserve a Christmas off”.

However, as I sit here late on Christmas Eve writing this, I do miss the fact that I won’t have my family around me this Christmas. They’re crazy and the ensuing family dramas are way too much for my fragile health this year; I know all that, but it doesn’t change the longing for Christmas.

I’m an Atheist, so Christmas does not have any religious meaning for me, but I love it anyway. I love the way everyone makes time in their crazy schedules and busy lifestyles to get together, all the food and drink that is shared, even the hubbub in the weeks leading up to Christmas and then the silence as everyone takes Christmas off. But this year there is none of that, and it is affecting me more than I thought it would. Maybe we’re just all conditioned to want a Thomas Kinkade Christmas, which is why we rush around and spend so much. We’ll never achieve it, but when we don’t even try, like me this year, it does feel horrid.

I guess I should stop the whining; after all, I chose to be alone. There are those that have no choice. Perhaps they have no family, or there are those that are too ill to even leave their beds to spend time with family. Some with severe ME cannot even bear to have someone in the room with them; surely that kind of Christmas is worse.

So, to all those who happen to be alone this year, Merry Christmas to you, and no matter how you spend the day; pretending it’s not Christmas, or celebrating alone, watching your favourite Chritsmas movies, or distracting yourself with something else, I wish you a wonderful day.

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