Packing tips

Such pretty cases; photo source Pinterest

It's finally time to get packing those bags to go away. I wish! Firstly, the golden rule if you have a chronic illness, as highlighted in my pre-packing/ planning post is to leave the week before you go away as free as possible for resting. This is also a useful tip for anyone wanting to take away some of that pre-holiday stress, you know that feeling when you're so stressed with so much to do that you need a holiday?

Again for anyone with a chronic illness get as much help packing as possible. You can supervise with your list and with all the preperation you have done. 

For clothes that are more likely to crease put them all together at the end of the rack in your watdrobe, to put into your case the day before going away.

Again, always work from a list, so not to forget anything. Below I have put two photos of comprehensive lists of the types of things you need. You can print copies of these and view larger versions by opening the links from my pinterest. You can use these as a starting point and then write a more specific one, 'blue floral print dress' for example. Descriptions are great if you are not able to sort through your own things and getting help with packing.  

photo source Pinterest

Photo source Pinterest

Know your baggage allowance and any sizing restrictions and adhere to them, those fines are hefty. Always weigh your bags at home before you go.

I have been looking up some packing tips on Pinterest too. Some of my favourites are 22 Easy Tricks To Make Packing So Much Better, some seem a bit extreme but others look genius, one of which being to use a foldable wardrobe storage, like you would use for camping to pack foldable clothes that you can then put straight into the wardrobe in your room. Another favourite was from twotwentyone, that has some useful tips for packing jewellery and keeping things organized.

Other tips are to always put the heaviest items at the bottom of your case

I'm sure many of you have heard that rolling your clothes is better and more economical with space, rather than folding. However I read a great tip about folding on the way there and rolling on the way back to know you have room for any purchases.

Wear your heaviest items to travel in, trainers for example or carry your coat.

Put the items that you are likely to need first at the top of your case. A change of clothes etc. Often for those with a chronic illness that is pyjamas, to rest after travelling.

I also pre-pack my beach/pool bag, with towel, sunglasses, sun cream, flip flops etc, so that I am not having to pull everthing out to find things. I can simply grab that bag and get soaking up those rays.

I saw a great tip on Pinterest and have included a photo of below, it applied to travelling with children but I think it could work for adults too. It was to create and bundle together an outfit for each day, so for example t-shirt, shorts, socks, underwear, hair accessories then place each bundle in a zip loc or vacuum bag and label with a day for each day that you will be away. Then do another bag for swimwear and pyjamas and some extra clothing just in case. If they are creasable then take each outfit out of the bag the night before and spray lightly with a water spray and hang up. I think this could work well for many people. As for children it promotes responsibility and helps them get dressed by themselves.

A great thing to pack is a refillable water bottle with a filter, such as this one on Amazon. They may be expenisve initially but think of the money you will save on buying bottled water, whether you're abroad or on a cruise. Also lessens the rush to get to the shops and allows you to refill at the airport without purchasing another bottle.

If the bathroom is small in your accommodation or does not have much shelf space use an over the door washbag or one of those shoe holders (as seen inn photo beleow) to store your toiletries. This is great for cruises or caravan holidays.

As well as luggage tags, which could easily rip off put a piece of paper with your home address and holiday address on, on top of all your items inside your case, making it easier to be sent to you should it go missing.

This isn't a packing tip as such but could come in handy for anyone travelling with young children. If your accommodation only has a shower, consider buying an inflatable paddling pool or boat to be used as a bath. Guess that could be used for spoonies too. Remember you can tranport 2 pieces of medical equipment with you, free of charge, so one of these could be a shower stool or wheelchair.

Check out my post on special assistance and medication for more information on travelling with medical equipment. 

Do check out Pinterest packing tips for lots more tricks and nifty ideas.

Anymore packing tips then please leave a comment. Remember to pace as much as possible and get help where possible too. You may notice I've not mentioned hand luggage, well fear not that is coming up next. I thought it deserved a post of it's own seen as it would be carrying the majority of your spoonie and travel survival toolkit.

Sian

Reminiscing

That title took several attempts, my spelling is atrocious lately. I've been spelling things as they sound. Naughty brain.

Anyhow, today I'm diverting a little from my travel series because as the title suggests I've been doing a lot of looking back lately. I know the importance of trying to live in the moment and most the time I do. I often surprise myself with how fast time can go when you feel it should be dragging from doing very little over and over. However it's inevitable that we'll look back on occasion. Thinking about our lives before M.E and how much things have changed.

Lately I've been thinking about life a year ago and although I still had M.E when I think back things were very different. Just over a year ago my friend gave birth to a gorgeous baby boy and myself and another friend went to visit. But the big thing was that I actually drove the 20 minutes there and back. That's the last time I drove. I wasn't originally supposed to drive, not wanting to use up too much energy and fearing not being well enough to drive back, but my friend got lost so I had to go find her and then she followed me there. And all was fine. I do miss driving and the freedom it brings but right now I'm sure I wouldn't have the strength to use the pedals or handbreak.

What's more, a year ago I actually went to a football match. A 25 minute car journey 25 minute train journey, a ride on the top deck of the soccer bus, waiting around before going to our seats, climbing the steep steps to our seats, sitting for 90 minites, celebrating goals and then the same journey home. How the heck did I do all that?

I remember I wasn't going to go too, as I was feeling rough and hadn't had much sleep. Again, what was I thinking? In truth I was thinking I needed to escape my thoughts. I'd found out a few days before that a friend was in an induced coma after developing double pneumonia (hmm no problems spelling that) and all I wanted to do was rush down there, 3 hours away. But obviously I couldn't. It was very frustrating. So I think I was running off adrenalin. It also helped that I rested in the car and train and used minfulness. The good news is that he came out of the coma on Easter Sunday, so we now call him Jesus, which he relishes.

Looking back it's crazy to think about doing those things but I did them. I was very much of the opinion of trying to do what I could and grabbing opportunities. Perhaps subscribing a little bit too much to the boom and bust theory but I didn't care. I simply wanted a normal life when I could. And now that my conditon has got worse and fibromyalgia has set in I'm glad I did them.

If I could recover my health to what it was a year ago, first off I'd be extatic, I have no doubt I would be a bit reckless. Make the most of it. It may not be good in the long run and could end up relapsing again but at least I'll have intetesting memories. Of course I would ensure I got plenty of rest too and not do too much knowing full well a relapse could happen but if there was an opportunity and I was well enough I'd grab it.

Now those opportunities might just be to get out for half an hour round the shops but they're still opportunities I grab when I can. I remember being on holiday just before my diagnosis and telling myself that although my life was about to dramatically change that if I could still steer it in a good direction and make new memories then I had to make the most of things when I could. I'd try my best to not just be defined by illness and keep developing the condidence I'd gained. That's when I took a dip in the sea from a boat (I didn't jump). I am terrified of deep water so I shocked myself with that one. But I was so proud of myself.

The one time it bit me in the ass (although the payback actually wasn't too crazy) was when I went horse riding on holiday. It was more than I was expecting, we did a lot more cantering than I could cope with and I was clinging on as I was so tired. My horse also hated this other horse who's rider kept trying to talk to me about Prince Harry getting naked (he was a German man that turned up in just speedos, sandals and a bumbag, that's a memory in it's self). I forgot just how much hard work horse riding was.

But again I did it. I know some people will say well if you did that you can't have had M.E and indeed it is a big difference in the scale of things now. M.E is a journey with peaks and troughs. Those things weren't easy, there was plenty of resting and payback. However memories were made at a time I thought I'd be very limited to making new and exciting ones. I'm so glad I did.

Of course now they might be more tame memories to make but with the help of my memory jar I'm appreciating them all the more. Life is not just about the big events it's about experiencing great friendships and love, laughing and learning.

So many people take their health for granted. It unlocks so many doors and opportunities. So although I know I would grab opportunities and be a bit reckless once I reduce the severity of M.E, I'll be sure to look after myself too, so not to come crashing down again.

If you had the chance to do something new or revisit something, what would it be?

A photo collage below of some of those memories mentioned in this post. Check out those bruises!

Sian

Some useful tips for travelling with a chronic illness: special assistance

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Apologies for the interval between this series of blog posts on travelling with a chronic illness. Perhaps now is a good time to start up again though, with the advent of Spring (yes I'm a comedienne) putting many people in the holiday mood, or more likely just the rubbish weather making us want to escape to the sun. I know that I certainly am desperate to jet off to my favourite Greek Haven.

Just to recap, I started this mini series of posts to give advice to help chronically ill people know that there are ways and means to travelling when you have an illness. Yes, it requires a lot of planning and consideration but it is possible. The first installment of this series on research, a very important stage of preparing to go away can be read here. My tips on finding travel insurance can be found here and a list of all the planning, a checklist of necessities that you will need to do here. You can read about my adventures abroad here, where I had a meltdown at the airport because I could literally not walk another step, so we had to ask for last minute assistance. This is also where I knew that when I got back from holiday I'd be needing a wheelchair to help me get around. Then the next time we went away I used prebooked special assistance, which you can read about here.

This post is dedicated to the mecca of spoonie travel and that is special assistance. It really does make all the difference. Special assistance is a service that helps those with a disability of any kind or those that cannot walk far through the airport and on the flight.

Airports are big, busy places, generally with lots of walking and waiting/ standing around. Cueing to check in, cueing at passport control, cueing at security, cueing for the toilets (ladies), cueing at the boarding gate, cueing on the plane as people stow their things. And the distance to your gate can be long. Therefore special assistane for anyone with limited mobility is ideal. 

I reccommend anyone with a chronic illness or disability, invisible, hearing or sight problems or otherwise, including learning or mental health difficulties consider adding special assistance when booking their flights. Say for instance you are travelling alone and you are hard of hearing then special assistance through the airport can help you get through the airport and onto the plane. A member of the team can help you at check in, security and th boarding gate. Also I have seen people who are very nervous about flying use the service so that they avoid cues getting onto the plane, which may bring on a panic attack. Special assistance through the airport is usually ran by a seperate company, however it must be reqested through the airline so that they have all the necessary information to keep you safe during the flight and arrange assistance on arrival at both airports. I will list the special assistance pages of a number of airlines at the end of this post. However when booking assistance I always reccomend phoning them as you can discuss your needs in more detail then. Phone numbers can be found on each page.

If you have mobility problems and use a walking stick or crutch then these can be taken onboard, they don't incurr any extra charges and don't count towards the number of carry on items you are allowed. The only rule is that they are scanned and that they do not obstuct the planes ailse once onboard. For wheelchair users or those that need to use one to cope with walking distance at the airport but do not have your own whelchair, then you can request one to help you through the airport. Sometimes if you only require assistance to your boarding gate a buggy may be used. You also have the option of someone taking you, which s good if you are travelling alone or one of the other members of your travel party can push you. Before boarding anyone using special assistance is asked to wait in a designated  area, where members of the special assitance company will come and collect you for boarding. 

Different airports and airlines have different boarding policies, some will board you first, others last, sometimes there is some cross over with other passengers so be careful and clear that once on board you do not want to be stuck in a cue as others stow their bags. This is why you are usually boarded first or last. To get onto the plane you have the option of walking up the steps if you are able to or to use a special lift. Once you're up you can then choose whether you walk to your seat or use a specialist wheelchair that will fit down the ailse. The lift will be used at the back of the plane for reference on how far you will have to your seat. Think about the size of the plane you are on. Last year I choose not to use the lift and was boarded at the front of the plane, our seats were towards to centre but it was still quite a walk, luckily by that point everyone was sat down and I had help of one of the ground crew to lean on. Funnily enough there had been some mix up between the airline and special assistance company, so the gate manager was wondering where the heck 7 passengers were and a wheelchair to go in the hold. A few more minutes and they probably would have had to have took our bags off the plane. I was just grateful that everyone else was sat down and the aisle was clear.

In terms of your seats again it varies between airlines. Some have specific seats that have moving armrests on the aisle seat for easy transfer and slightly more leg room. These seats will be reserved for you at no extra cost. When we flew out last year I was lucky as we got 2 rows between 4 of us, so I could stretch out my legs. it is dependant on how many passengers there are. Other airlines will allow you to book seats where you like, other than on an emergency exit for safety reasons. Of course it can also be dependant on what class you are flying.

I mentioned there about wheelchairs going into the hold. If you are taking your own wheelchair, which you can do free of charge then it needs to get tagged at check in. You can stay in it until you are on the plane and then it gets put in the hold. Once you arrive at your destination it will be taken out first and be ready for you to get into. If you are using the lift you will usually sit in one of the special assistance chairs until you are on the ground and can be transfered into your own chair. One thing to note if you are taking your own wheelchair is that if you have any tools for your chair tell security so that they can be put into your tray to be scanned. 

It is also possible to use a scooter but there are different rules about types and batteries, which can be read in each airlines policies below. The same applies for powered wheelchairs. Sometimes you will need to give dimensions when you book to assure there is room in the hold. All airlines are supposed to give an allowance of 2 pieces of special assistance equipment to go in the hold, unless the flight starts or ends in America in which case there is no limit.

There is a range of other in-flighg services available too depending on your airline and often destination. For example an onboard wheelchair for access to the toilet. On board oxygen. Specialist meals for different dietary requirements. Captioned entertainment on longer haul flights. Again it is always best to ring up the airlines special assistance helpline who can taylor requirements to your needs.

Here is a list of a number of airlines special assitance pages click on the names to be taken to the page.

Ryanair

easyjet

Virgin Atlantic

Thomon Holidays as Thomson is a holiday company they also have more information about assistance requirements needed at your resort or onboard one of their cruises.

British Airways

Stay tuned for the next installment, all about medication whilst travelling.

Please share your experiences if you have ever used special assitance to go abroad or have any more tips to share.

Sian x

The Princess and M.E and The Big Sleep For M.E

Sleeping Beauty photo source: Pinterest

I bet you thought that your only chance of becoming a Princess was to bump into Prince Harry in a London nightclub (chance would be a fine thing) or to wait 17 years until Prince George comes of age. Well think again! As part of M.E awareness day on May 12th and the following week, there are so many events happening to help raise awareness and fundraise for M.E charities. One of which is The Big Sleep For M.E (the link will take you to their website
.)

The Big Sleep is a fundraising event that is inclusive for severe sufferers, that are housebound or bedbound. Because all you need to do is go about your usual day and have a big sleep if you like all in the name of raising awareness. Show people what living with M.E is really like and help raise the illness's profile as well as raise funds for much needed research and a centre of excellence. See my previous post for more information on why this is so important to us sufferers and what The Big Sleep will help fund.

On May 12th and the following week there will be all kinds of sleep related events, some people will go to work in their pyjamas, take part in sleep walks, sleep walkies where you can get your dos involved. The Big Sleep organisers will be doing a prize giveaway, as well as an online disco. I wonder if they will have a chill out music session, like in Ibiza? Some lovely relaxing tunes to get us all calm, ready for sleep.

So where does the becoming a Princess come into it? Well myself and other M.E sufferers on Twitter are going to be becoming Princesses for the day, to help raise awareness and hopefully rise some funds. Why Princesses? Well it came about through a bunch of Twitter M.E spoonies saying that we were the real Sleeping Beauties (we're not vain honest, and most of the time we can look how we feel) and also that instead of having a pea in our bed causing discomfort we have M.E. Although those with fibromyalgia too will know that a pea in your bed (yes, go on laugh) could actually cause you pain. And well because those battling chronic illness day in, day out deserve to be a Princess every now and then. Heck, we're demanding enough. Can you get this for me? Can you help me out of bed? May I have a straw for my drink? So the idea of dressing up as Princesses was born and it has sky rocketed since.

Please note that you don't have to have M.E to join in, everyone is welcome. M.E isn't prejudiced and neither are we. So anyone wishing to join us and become a Princess for the day (go on convince your bosses) and for all the Princesses already aboard the carriage here is what you need to do:

1) Contact me on here or on Twitter @sianwootton

2) The group The Princess and M.E is already registered with The big Sleep but if you want to register separately and be in with a chance of winning a Big Sleep Mascot Bear then you can do so here. Fill in the form and state that you are part of Team Princess. #teamprincess #theprincessandME

3) If you want to have some printable materials advertising The Big Sleep then download them here. This includes logo's suitable for printing or use on the internet, school leaflets, sponsorship forms, parental consent form for photos of children and fundraising and information pack.

4) We have set up a just giving team for fundraising here. As you can see their are 5 princesses already but some pages have more than one name, for those that don't want to set up an individual account, or find it too much. So you can either ask to be put onto one of the already set up pages or if you already have a just giving account you can click on 'join in the team' on our Princess page, just a note to say this only shows up when using the full version of the site. Also note that your chosen charity is set to Invest in ME. If you want to create a new page then use this link and again choose Invest in ME as your charity.

5) On May 12th (although some people are doing it on the 11th due to work) dress up as a Princess, or a Khaleesi if you wish. Those that are feeling too bad on the day please don't push yourselves too much. Put up logos if you have printed them from the toolkit and simply post a photograph of yourself to social media, stating why you are dressed as a Princess. If you're using Twitter put @thebigsleepforme in your tweet or #theprincessandME. You can also Facebook at The Big Sleep Facebook page or on this blog's Facebook page. Or instagram using hashtags #spoonie #MEcfs #myalgicencephalomylitis #theprincessandME #thebigsleepforME

6) Keep an eye out on Twitter and Facebook for different giveaways and competitions, vintage wedding and homes uk have kindly sponsored the event and there are some other sparkly businesses involved too like Tinkerella loubella, they make some great personalised wine glasses and even a sign that says 'shhh Princess Sleeping', oh how apt! There's also Bling Mama, who have some amazingly sparkly shoes, check out the picture of the cinderella shoes below!

If you would like to make a donation use this just giving link. Donate to anyone of the Princesses on there and you will be entered into a prize draw to win a cosmetics bundle from e.l.f cosmetics worth £50 or a Hug Box, a box full of chocolates and sweets. See photo below. Even a retweet or a mention is great as it helps us raise more awareness.

I am also making some jewellery with half the proceeds going to the just giving page, and again anyone purchasing one will be entered into the prize draws. I've posted a photo below with what I've mamaged so far but I will do a separate blog post soon.

Help us spread awareness of us real Sleeping Beauties and believe me all our Princesses are beautiful people, despite battling this disabling illness. The film versions of Sleeping Beauty might have waltzed off into the sunset with Prince Charming but after our Big Sleep Event our big hope is that more people know about the seriousness of M.E and we are a few steps closer to getting much needed research to help us find a cure. That will be our Happy Ever After.

I wouldn't say no to a Prince Charming either

Many thanks

Sian x

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.

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

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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.

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. 

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 here, here 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.

Expectations

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.

The practicalities of cooking and preparing food; some useful tips

Carrying on from my post on healthy eating and some useful tips about food shopping, today's post is about ways to manage cooking and preparing food for people with a chronic illness or even an injury and sometimes pregnancy. Unfortunately for many people with a chronic illness this can be elusive or very limited and many sufferers require help, whether that be to assist them or to prepare and cook meals for them. Personally, I do not have to prepare or cook any meals as I live with my parents. That of course is not an excuse not too, it's because I find it very tiring and also have difficulty standing for periods of time. It is one of the reasons why I had to move back to my parents and I am forever grateful for their help, even if at times I dislike asking for it. On good days I can pour myself a cold drink and get things out of the cupboards but on bad days I need help with that and may also need help to cut up my food and use a straw in my drink, because I cannot lift up the cup. On some occasions I have also had to be fed. Non of which is very nice.

What can cause problems is the fact that my meal times can vary and be different from that of my parents. This is because my days have no set pattern and when I eat very much depends on when I am awake. Neither of which is particularly good or healthy. When I end up eating at different meal times I can sometimes feel like a burden and will often ask for something very easy and quick to make. There is only so many times that you can eat toast though! If my Mum is making a stew or some sort of sauce etc then she tends to make a big pans worth and then freeze several portions and give them to my Nanna, who is 87. Lately she has been setting some by for me too, sorry Nanna. Therefore they only need to be heated up in the microwave then. Microwaves are a great invention.

Many people find cooking or baking to be very therapeutic and find that they enjoy the creativeness and relaxation of cooking and baking. In which case they may want to use some of their spoons (see spoon theory post) on cooking and baking. It all depends on the person. Some people like to be more hands on and creative with their recipies if they also suffer from a lot of food intolerances, which can also affect many people with M.E. There are a lot of great blogs about M.E that have some nice recipies for gluten free diets etc. A year ago I used to do quite a lot of baking and used to enjoy the relaxation and creativity of it, as well as the eating of course! I used to enjoy the arm work out of not using a mixer but after some post exertional malaise I started to use a blender and also to try and sit down as much as I could rather than stand up. Unfortunately I haven't been able to do any baking lately.

The following links have some great tips to help people with a chronic illness or injury cook and prepare food. It has been compiled by chefs, occupational therapists, authors on disabled living and accessible kitchenand bathroom designers and give a range of tips for sufferers and carers.

http://www.thekitchn.com/cooking-with-a-physical-disability-171416

http://www.cookingmanager.com/tipscooking-disability-injury/

I thought it would be better for me to give the links rather than me re-hashing, especially when there's some really good tips. So be sure to take a look. I have included a few others below, some of which I learnt at clinic. Remember all the tips don't apply to everyone and may be suited to each sufferer at different times during their illness. Knowing that there are ways though that you can help yourself and help others is great and allows us to pick and choose what we need in order to keep us as healthy as possible.

* Is there someone that is available to cook meals for you. Perhaps if they are cooking in bulk they can give you some portions to freeze.

* Can someone help you to prepare meals? Or to cook them?

* See my post on shopping for food for links on companies that deliver frozen foods that just require you to defrost and heat up.

* See your GP about what is available in your area to help you. Or to refer you to an occupational therapist.

* Seek advice from an occupational therapist who can advise you on different techniques that put less strain on the muscles as well as any equipment that would be of use to you to help make preparing and cooking food easier

* Visit a specialised disabilty equipment shop to see what is available and to also get advise.

* Do not be ashamed or put off by microwave meals. They are easy to prepare, thus saving energy. Have a look out for good quality ones that have less saturated fats and not processed to make it a more healthy option and you can always add extra vegtables or a salad too it. The dietitian from the clinic gave us this tip.

* Use pre cut vegtables, either fresh or frozen. Always annoys me how they are more expensive though

* Do the dishes another time if you do them manually. If you do have a microwave meal then save on dishes by not putting it onto a plate aswell.

* Sit down as much as possible to put less stress on your legs.

* If there is  a gadget to help you do things easier, use it. For example with the mixer. You may also benefit from an electric can opener.

* Store the things that you use most in easy to reach cupboards. Cereals and bowls for example.

* If you find it difficult to sit in a chair to eat your dinner because you need to keep your feet up try a tray that has a cushion on the bottom of it for more comfort and stability.

* Try to find lighter weight knives and forks if you suffer from pain in your hands or wrists. If  you eat out or at a family members or friends then take them with you too.

* Others may benefit from wider knives and forks, because your hands are less clenched and therefore put less strain on the muscles and joints. Again if you eat out take them with you for comfort.

* If you struggle to hold a cup or fear that you may spill a hot drink then use a straw instead.

* Keep snacks in easy to reach places so that if possible you can get them yourself.

* If you can handle the weight of a jug try keeping one close by so that you can easily top yourself up with water when you need it without going back and too to a tap. Best to try one with a lid.

* If you can cook for yourself, consider making bigger portions and freezing them for future dates when you aren't feeling up to it.

* Break the process into sections. For example prepare the food, then have a short break before cooking it.

Again my best advice is to seek help where you need it and to know your limits so that you don't make yourself more unwell. Whilst at clinic we were told of a sufferer that was making herself suffer even more because her family expected her to prepare, cook and then clean the dishes and put them away afterwards as she had done for many years before she became ill. However because she was suffering from a lot of post exertional malaise doing this, she decided to take drastic action. She decided to get a lock on one f her kitchen cupboards where she kept enough crockery, cutlery and pans to make her own dinner. Then each meal time she would simply cook or prepare a meal for herself and wash up her own dishes. After the dirty dishes started mounting and her family weren't being fed by her they soon realised that they needed to help out and the extent of the illness. This may seem drastic but they found a way to help themselves and however much we may hate it sometimes we need to be selfish in order to not exasberate our symptoms.

I hope that you have found these tips and those on the links useful. If you have any further tips then please leave a comment. It would be great to hear them.

Things I learnt in clinic: Mindfulness

One of the first things that we did at clinic was learn about mindfulness. It is a technique that can be used by anyone regardless of the state of their health and is a way of focusing the mind and taking time out to refresh and relax. Similar to meditation. In fact in draws upon many meditative qualities. Lately it has been hailed as a great technique for mental health improvement especially with conditions such as depression and anxiety as it can help calm the mind. In fact it was a featured technique on that programme on BBC 3  Failed by the NHS. In fact they are trying to get mindfulness courses free for those that would benefit the most.

So what exactly is mindfulness? According to www.bemindfulonline.co.uk it is ' a mind-body approach to life that helps people relate differently to experiences. It involves paying attention to thoughts, feelings and body sensations in a way that increases our ability to manage difficult experiences and make wise choices.' It can be a combination of two different types Mindful Based Stress Reduction and Mindul Based Cognitive Behavioural Therapy. The first MBSR, relates to reducing stress in ones life and therefore being able to think more clearly, which can be useful for conditions such as anxiety. And the latter, MBCBT is a technique that involves changing the way you think about certain situations, to be more in the moment rather than having your thoughts race. They also say that mindfulness 'enables us to be aware of our thoughts and emotions so we can make wise choices and respond better to different situations.' And in turn make us more aware of our bodies, which can 'even help people cope with chronic pain.'

Well that last quote sounds really good. But what mindfulness does is allow you to relax and slow down. To have some time just for you. So as I said my first experience with mindfulness was on my first group visit to the ME clinic. I had heard of CBT before with having councelling but never really put it actively into practise. Or so I thought until I have done some research into mindfulness and noticed how perhaps I had been using it but had never associated it with relaxation.

So how was it introduced? We were all asked to sit comfortabley but with our feet firmly on the ground. Then to close our eyes and to do some deep breathing. Breathing in for a count of 7 and breathing out for a count of 11. By breathing out for longer it helps the body to relax faster. Then after we had taken a few breaths we were asked to just zone in and concentrate on our breathing. Noticing the minutae of the process. The sound as we inhaled the air through our noses, whether we moved certain parts of our bodies as we inhaled and what the movement was. The sensation of our diaphrams expanding as the air filled our lungs and as it then detracts as we breathe out. As the excerise went on we were told to notice whether our concentration was lapsing at all, as in away from focusing on our breath and if it was to notice what it was our attention had been drawn by. Then to try and take our attention back to our breathing each time our attention wandered off.

In total we did this for 5 minutes on that first session and built on it in the following sessions. After the excercise we were asked about how we found it and whether we did find our focus wandering away from our breathing. Personally I found it difficult to begin with. As did many of the others. I found it difficult to relax as it was an alien concept back then and I also felt quite self-conscious with doing it in a group (somehow you feel like you are the only one and everyone else is watching or have left the room.) These were the main things that took my focus away from my breathing but when I did get into the mindfulness I did feel very relaxed in fact I was trying not to fall asleep. Oops!

But falling asleep is in contradiction with the aims of mindfulness. But at first it happens to many people, especially if you are not used to relaxing. It is a natural reaction to your body and mind calming down and if you are not used to it then it can make you feel sleepy. Because what mindfulness is supposed to do is to ger you more in tune with your body and mind. To understand more about your thought processes or how we use our bodies. For example focusing on what our bodies do when we are breathing. Therefore rather than using it to aid sleep it is more of a relaxation tool that also helps us become more aware. As I said to give us 5 minutes or more to ourselves. To help us think more clearly and focus on the next task that we undertake and forget about what we had been doing. Or even worries about past or future problems and anxieties. To just be in the moment. We were told that using this technique between tasks/activities that it would help us to be more present and in turn use less 'effort' (see post 'things I learnt at clinic: diaries) or spoons.

Building on from this you can start off in the same vain, focusing on your breathing, and then start assessing each part of the body. Focusing on only that body part. Noticing whether there is any pain or tension there? And if there was to keep with that thought, focusing on the pain and noticing how the more focus is placed on it the more intense it became. But the aim is to keep focusing as much as possible on it until we noticed our attention drifting, as it is want to do, and with this how the pain generally plateaud and faded.

I had done a similar excercise at university, using some of Stanislavski's methodology on acting to become aware of the body and how we use it and also to fully relax it before transforming into a different character. A character that would use their body in a totally different way. One difference though was that as we focused on each body part we would also need to tense it and then let it go to relax the muscles more.

Another mindfulness technique is that of 'active mindfulness', which draws upon some of the CBT techniques. As you might have guessed this is a more 'active' exercise but no it does not require a gym membership. It simply means using some of the techniques in your everyday life. One that comes to mind from when I was learning about CBT is to not just have a shower but to 'feel' the shower. Oh dear how pretencious did that sound? Notice the minutae of what it is you're doing. Notice what the water feels like. The smell of your shampoo and shower gel. How it feels on your hair and skin. Be 'present'.

How often have you had a shower and been thinking of other things? Being late for work, your outfit for the day? So many things that you probably don't heed much attention to showering. Unless it suddenly goes boiling hot or freezing cold. This is because it is so much a part of our routine that it is locked in our muscle memory. Meaning we can do certain things without really giving them much thought. The same could be said for driving, especially on a trip that you do often, your daily commute for example. It is only when you go somewhere new or have a passenger in the car when you are not used to it that you really pay attention to what you do when you drive, otherwise our minds are usually elsewhere or singing along to our favourite driving tunes.

So what can be done is just being more present in different situations and activities. For example if you are out for a walk or a wheel on a nice day, notice the sun on your skin, where do you feel it the most? Notice the sounds of the birds, the things and people that you pass. If you are walking, how are you walking? Does your heel or the ball of your foot hit the floor first? Am I sounding hippyish yet? As I said it's just thinking about the minutae that we do without really 'thinking' about it. Or it could be said that it is stopping and appreciating the world around us.

I can see how this would be a great technique for those with anxiety related disorders as it would help to focus the mind and try to calm any worries or fears that are provoking the anxiety. Not letting it all build up into mega panic attack levels. Obviously this all depends on the level of exposure, someone with severe social anxiety may take a while to practise the technique and for them to use it successfully in a social situation. I remember when I used to go out when I suffered from anxiety and by trying to slow down and focus more on what was going on around me or on my breathing did help. In that programme 'Failed by the NHS' some of the patients with anxiey and OCD found mindfulness helpful as it gave them a break from dwelling on their anxieties or thinking about ritualizing.

As for those of us with ME then I think the relaxation is very useful. It's also a good thing to do between tasks, depending on what the tasks are. If you are in bed and going from surfing the internet to reading then not so much. However if you have done something like organizing your wardrobe and then want to do something quieter like watching tv then it's worth a try. You will be better equipt to focus on the tv programme without your mind wandering off too much and you using up more spoons or effort as your mind is on other things as well.  We were asked to at least implement it once a day, more if possible, depending on the activities we were doing. Say for example if you were working then it would be good to try during your break. As for active mindfulness I think it can be helpful. We already need to break things into smaller chunks as it is to think about our stamina levels. But by thinking more deeply about experiencing them it can save some brain focus too. Plus by focusing more on doing something it can help with the brain fog as you are more likely to remember doing something. I should try this more with taking my tablets. I write it all down but as taking them has become second nature I can never remember actually taking them.

I have to say that it is useful in this vain and can actually be more refreshing than a short nap. Make sure that you have somewhere quiet to practise and if you don't live alone maybe tell othets that you don't want to be disturbed for 10 mintues. It can be hard to get into at first, especially with no one guiding you through it but once you get the hang of it you can use it anytime, anywhere you like. Try not to force your thoughts though or get annoyed if you do find your mind getting sidetracked during the excercise because that only winds you up, defeating the purpose of it. Our minds wandering is perfectly natural, especially if we are drawn by sounds or smells as that again is our fight or flight instinct kicking in.There is an online course available at the be mindful website (see link above) and also courses that you can attend. As well as books or audio sources available.

I don't practise it as much at the moment but that's because life is at a much slower pace but if I'm feeling stressed out then I will use it. Hopefully when I'm out of this flare and slightly more active again I'll be able to use it some more, when I remember that is! I think it's a useful technique for anyone. It is good to have 5 or more minutes just to reset and relax. Maybe try it after getting home from work, to set a clear distinction between work and home. Leave work thoughts at work as much as possible. Especially if you are on the go a lot and feel like your feet don't touch the ground. I wish I'd have known about it back when the only down time I had was sleeping. So give it a go and see what you think.

The rheumatologist appointment

So I'm sure you've all been on tenter hooks wanting to know how I got on at my rheumatology appointment, so I will put you out of your miseries. Hehe. Sorry it's taken a while my brain has been away on holidays since the appointment, it still won't tell me where. So I'm a big foggy. I have just had the coldest cup of tea ever because I completely forgot about it and it was right beside me. So I will try my best to re-tell the tale.

First of all it was quite the mamouth effort to get there. Remember for more than a week before hand my only adventures had been to the bathroom and a couple of trips downstairs if I was lucky. So getting out of the house and then actually going somewhere was quite the effort. But in good ME patient style I made sure that I took it in small chunks. Starting with having a wash (well baby wipe wash, I didn't have that much energy to spare, all hail baby wipes) and getting dressed, with help and I made it as simple as possible by just slipping on a maxi dress. Then I rested for a bit before going downstairs doing the bum shuffle technique and then rested again downstairs for an hour before getting into the car. The car ride was only 10 minutes but it was really painful and felt like it was a lot longer. Just getting into the car was a struggle with the limited space to swing your legs and with winging my legs being a problem anyway. Maybe next time I could try my gravity technique and hope I can get myself back up into a sitting position.

But we got there in one piece and I was wheeled by Mother dearest into the hospital. Firstly I needed to have all my bits and pieces checked like my weight and height and blood pressure and the nurse doing this was really helpful in supporting me. They also checked my wee, because of course you cannot set foot into a hospital without doing a wee sample an them taking blood (more on that later). Anyhow they said that it was showing signs of infection, which was a bit of a surprise to me but when I thought about it my lower back had been hurting more and I was rather feverishly sweaty. But of course sometimes you just think that these are 'normal' and put them down to ME, which can often be a big mistake. But here's the thing after getting a bit paranoid about it (yes Mikey paranoid) and then of course you start 'noticing' certain symptoms more I decided to take another sample up to my GP's to get some antibiotics before it got nasty and I was left with yet more ugliness to deal with and then recover from. Anyway the nurse check it and miraculously there were no signs of infection!!!! Odd but actually that suited me fine. But back to the appointment.

I actually saw the rheumatologist that I saw a few years back for my wrists so that was good, not that she remembered me but I knew that she was easy to talk to and had done a good job the first time around. So after talking and examining me, oh bejabus how that hurt! I think she got the message that I was in a lot of pain. Let me just explain that Fibromyalgia can be diagnosed by tender points in certain areas across the body that can be extremely sore to the touch, even very gentley. So that was a given. At first she didn't mention the word Fibromyalgia until I did because she believed that ME/ CFS and Fibromyalgia were all in some way connected, different faces for the same beast as it were. She noted that I usually present more fatigue and sleepy symptoms but because my body is in recovery after a flare, which was a bad chest infection I had a few months ago and left a bit too long to get treated, that now my body was presenting more Fibro symptoms. Just goes to show how long it takes to get over something as simple as a chest infection and the lasting effects it has on our bodies.

On the other hand I'm not too sure about the whole lumping the two illnesses together. I guess that could be down to her referring to it as CFS- chronic fatigue syndrome rather than ME- myalgic encephalitis. Chronic fatigue syndrome is a term hated by many sufferers as it doesn't describe even half of the other symptoms that are all part and parcel of this condition, whereas myalgic encephalitis describes a range of symptoms and has that all important word 'myalgic' which refers to muscular pain. It is certainly possible to have one without the other and there are two different societies for them. But many people with ME will get Fibromyalgia too. Like I say there are so many theories and opinions out there on these conditions that it is quite confusing and each person you see will have different terms and opinions. Oh dear. Anyhow as I meet all the criteria for Fibromyalgia based on the tender points and some other symptoms such as fatigue and foggy brain I think it's safe to say that I have ME and Fibromyalgia. She did give me a booklet on Fibromyalgia from Arthritis Research UK so I am slowly working my way through that and when I do I shall be back here to explain fibro in a bit more depth for you all.

So as well a having a flare up of symptoms after this chest infection she also thinks that it could be down to a lack of sleep. Now I know so many people who will laugh at this, myself included, given that I can have 20 hour sleeps and have never in my ME time been able to cope with less than 12 hours. However I never, ever feel refreshed afterwards, it's like a perpetual hangover- oh what is one of those again? This could be a sign of not getting enough restorative sleep or stage 4 non dream sleep and therefore my body isn't recovering as it should. So her first step and that of my GP is to try an address this sleep issue and try and get me some quality zzzz's. So it just goes to show that it doesn't matter how long you sleep for as long as you're not getting restorative sleep you are risk of Fibromyalgia symptoms and other nasties. So the next step is to try to tackle this and find something that gives me better sleep without making me anymore drowsy. She recommended a drug called amitripiline that used to be used to treat depression but now that they have more effective tablets for depression it is often used as a pain medication and for sleep. So fingers crossed it will do some good and if not on to the next.

As well as that she said that every day that I should try and move around a bit more and that means move not exercise. Mainly move more around the house when possible and a little more every day to get the muscles used to moving and to tell those dodgy pain signals that walking around really shouldn't be hurting. But obviously they will hurt at first as they get used to extra movement. So it's just about finding that balance. I have been trying to do a bit more each day even if it's just walking to the bathroom but it's also been nice to have been able to get downstairs. Change of scenery and all that! Plus more sky channels to peruse. Having the pain killers certainly does help though, but I'm pretty sure that I won't be  running marathons anytime soon, not that I have ever wished to run a marathon.

She also has repeated my blood tests for muscle wastage and damage and to check my vitamin levels as that can lead to extra pain too. But as well as traditional medicine she said that more holistic treatments could be worth a try. Such as accupuncture, reflexology, massage, reiki etc etc, so there's plenty to have a go at. But for now I it seems like getting my sleep in order is the key issue. My GP rang again on Friday to see how I had got on and he is going to some research into the amitriptiline and other possible drugs and we are going to be gradually reducing the neurontin as they haven't seemed to have worked as well as hoped. We're also going to slowly reduce the oramorph, so good news family my crazy ormorph conversations will be around a little while longer.

So that's where I'm up to. Again apologies it's taken a few days but then it really wouldn't have made any sense. I will try and get a post on Fibromyalgia out as soon as I can.

Thanks for reading