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Showing posts with label Myalgic encephalitis. Show all posts
Showing posts with label Myalgic encephalitis. Show all posts

Thursday, 17 July 2014

Spoonie Travel Interview with Sophie


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


Name: Sophie
Illness: Severe M.E and spinal damage
Destination: Lisbon, Portugal
Who did you travel with? My husband
What airline did you use? EasyJet
 
 
First of all, how was your holiday? It was lovely, it was our honeymoon and was very much worth the 9 month wait! 

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



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

How was.... as a resort/ destination in relation to your illnesses/disability? (Access, flat, close to restaurants etc, quiet) 
Lisbon is a lovely city, but it isn't easily accessible, it is built on 7 hills of varying height and the streets are narrow and paved with a marble-like cobble effect which makes them slippery. 
Some of the things we went to see were accessible, the Oceanarium and Zoo, for example. But other's weren't so easy like the Estadio De Luz which was out of the way and took a lot of walking to. The Castle wasn't easily accessible by foot either, but there was a bus that went up to the ticket office. 
We didn't stay in a hotel instead we found a lovely apartment from Air BnB to stay in, and although it was in one of the small streets it was quiet and in the centre of everything. 
The open top tour buses were fully accessible with wheelchair spaces and friendly staff - we used the City Sightseeing company, but there were 3 other companies who all looked as accessible. This was a brilliant way to see the city without doing too much walking. 
  

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


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


From your experience(s) what piece(s) of advice would you pass on to other spoonie travellers? 
Make sure you check your destination is accessible. We didn't when we booked it as I wasn't very ill, but 2 weeks before I had a knock back and my husband was close to cancelling the trip after I looked to see how easy Lisbon was to get around in a wheelchair.


What items would you not travel without?
My fold up stick. When the streets were too difficult to use my crutches, my switch stick was my lifesaver. 


What are your favourite holiday beauty products?
My GHDs. I never go to stay anywhere without them! 
 
 
If you were to go on holiday again what would y do differently?
Next time we will make sure our destination is accessible, I will have no choice but to use my wheelchair on our next holiday and we have learnt from our mistake! 


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


Do you thin that despite all the extra 'hassles' of travelling as a chronically ill person it is still worth it?
Definitely, we might have to do it differently to other people, but just because we are ill doesn't mean we should miss out on holidays!
 
I hope you have enjoyed this interview, if you want to read some more from Sophie, take a read of her blog nonsensefrommysofa.wordpress.com


Sian x

Tuesday, 8 April 2014

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




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.




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.


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

Wednesday, 4 December 2013

It's beginning to look a lot like Christmas


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

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

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

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

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

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

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

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

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

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

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

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




Friday, 8 November 2013

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.

Wednesday, 6 November 2013

Some useful tips for travelling with a chronic illness: Planning


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

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


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

- book special assistance through the airline

- order any foreign currency

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

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

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

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

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


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

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

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


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

Tuesday, 5 November 2013

Some helpful tips for travelling with a chronic illness: Research

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

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

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


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

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

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

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

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

* Does the hotel have a lift?

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

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

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

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

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

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

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

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

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

Saturday, 2 November 2013

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.

Sunday, 20 October 2013

Some useful tips for shopping for food with a chronic illness

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

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


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


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

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

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

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

Other useful websites for frozen meal delivery services are:
www.wiltshirefarmfoods.com
www.oakhousefoods.co.uk

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

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

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

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

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

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

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

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

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

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

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

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


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

Tuesday, 24 September 2013

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.

Saturday, 31 August 2013

Things I learnt at clinic: Healthy eating

Before I begin this post let me just be boring and say that all the inforamtion that I use in this post was gleaned from a registered dietitian at ME clinic and from the NHS's website. I am in no way telling you how to diet. This post isn't about losing weight it's about trying to eat healthily. If you have any issues with your weight or diet then I recommend that you discuss them with your GP or a registered dietitian, who can help you make the right choices for you. Okay, resuming business.

Eating healthily is big business nowadays and please note that I say eating healthily and not dieting. Although the dieting industry is absolutely huge (forgive that awful pun). Of course some diets do not abide by the rules of healthy eating and can sometimes do more damage than good to your body. Or cause you to gain weight as soon as you start to eat normally again, which actually is worse for us as what we gain back is more fat and not the muscle mass that we have lost by dieting. So unless you need to be on a specific medical diet for some health reason or for weight loss surgury the answer lies in healthy eating. Of course there is excersise too, which is really important but that just doesn't come into some of our radars with a chronic illness.

Of course eating as healthily as possible is something that we are all aware of and know that we should do, whether we adhere to it or not. To use that old similie that is because food to a human being is like pertol to a car. Therefore the better quality the food that we put into our systems, the better performance we will get from our engines. So you can see straight away how this can have an affect on someone with ME. Because we constantly feel like we are running on empty it is important that we utilise food to help us get through the day and to help our bodily systems. Our calorie intake should be determined by our level of activity. Therefore the more we do the more calories we need to support this. Take cyclists who ride the Tour de France for example, they eat between 6000 and 9000 calories a day to allow them to complete the race. Just one stage (day) can burn 4500 calories as well as the 1500- 2000 calories that a body needs to function properly. This is according to www.bicycling.com. Again think about a car if you only have enough petrol/ diesel for 30 miles but you try and do 50 then it is going to break down. Obviously for people with chronic illnesses the amount of activity that we do can be very little but we still need to take on enough calories to support all our bodily systems and give us a boost on our low stamina levels.

So how can we eat healthily? Or what is considered a healthy diet? It's something that we hear all the time but the only thing that we commonly associate with healthy eating is salad. According the NHS's eatwell plate http://www.nhs.uk/Livewell/Goodfood/Pages/eatwell-plate.aspx our diet's should consist of one third starchy foods, such as potatoes, pasta and rice. Starchy foods or carbohydrates are energy giving foods, that also provide fibre and vitamins. Many people consider carbohydrates bad but they don't have much fat content and for an even more healthy choice there are many wholegrain options. Carbohydrates with low GI (glyceamic index) numbers can be beneficial for people with ME, as they release energy slowly and therefore are better for stamina than foods that have a quick burst of energy that could leave you feeling more tired. These include porridge, sweet potatoes and wholemeal or granary bread.

Another third of your diet should be made up of fruit and vegetables. Remember the 5 a day rule. Remember though this can include juices and soups, just make sure that you check it is not concentrated or flavoured to ensure that you are getting those nutrients down your neck. Fruit and vegetables are a good source of energy, vitamins, fibre and good sugars. Many fruit and vegetables are also good sources of anti-oxidants and can be good for boosting our immune systems, which can be useful for us ME sufferers, with us tending to pick up any bug making its rounds. What I will say though is that I know many people with ME can also suffer with IBS (post to come shortly) which can be aggravated by acidic fruits so if this is the case for you try to look more to non acidic fruits such as bananas, which are also a great source of energy. Also be careful of vegetables such as peppers and brocolli, which can also cause irritation. So for a good energy boost why not try a slow release carbohydrate such as porridge or a non sugary cereal with fruit to start the day off and improve that early morning dip in blood sugar and energy levels.

The last third of our diets should consist of protein, dairy and a small percentage of fats. Proteins include meat, fish, egg and beans and can be a valuable source of energy and provide lots of vtamins and minerals. When eating meat it is best to choose as much non processed meat as possibe and of course be aware of the amount of saturated fat content that the meat has. The leaner the meat the better. White meat is generally considered best for our health but red meat is also a valuable source of protein, providing us with iron and vitamin b12, which are good for helping combat fatigue which of course can be important to a person with ME. How often do you crave red meat when you are feeling exhausted or ladies on that oh so wonderful (spare me) time of the month?  So do not shy away from red meat, unless of course you are a vegetarian, you can avoid some cholestrol problems by eating quality meat and of course by cooking it in a more healthy way, such as grilling. Fish of course is well known as a healthy option, especially oily fish, such as mackeral, salmon or tuna (although tinned tuna contains much less omega 3). Oily fish is a good source of omega 3 fatty acids that are good for the heart and for energy levels. On average people should aim to have 2 portions of fish a week, one of which being an oily fish. Please see this link for more information on oily fish guidelines http://www.nhs.uk/Livewell/Goodfood/Pages/fish-shellfish.aspx Other sources of protein include eggs and beans. Eggs are a good food for those of us with ME, as they are quick to make and also have lots of vitamins such as vitamin A. There's no limit on the amount of eggs that you can eat a week but be aware that they contain cholestrol so take caution if you already have high cholestrol.

As for beans and pulses, they are very often forgotten about, other than the trusty baked bean of course, a can of which also counts as one of your five fruit and veg a day. Whoopee (cushion ;-)) Baked beans yet again are good for those of us with ME as again they are quick to prepare as well as nutritious of course. Try and combine them with wholgrain or granary bread, to maximise the nutrients because you are having a slow relase carbohydrate, protein and one of your 5 portions of fruit and veg a day. As for other beans and pulses they can be dried, which you have to soak over night, which could be bothersome but you can also get many in a tin. These include peas, chickpeas, kidney beans and butter beans. Try adding them into soups or stews or into sauces as an extra source of protein. Pulses are great for vegetarians as it gives them their source of protein. They are also a great source of iron and fibre.

Dairy is also an important source of protein and of course calcium, to help bone strengh and growth. Dairy products can vary in fat content, but there are plenty of low fat options to help you get the vitamins and calcium needed but in a more healthy way. Finally a small percentage of our diet should be made up of fats and sugary foods. Again the less saturated fat that we consume the better but some fats in moderation are needed by our bodies. Fat can help our bodies to absorb nutrients but also is a source of energy. Obviously if you are looking to lose weight then this is the first area that someone should look to cut down on, especially those saturated fats.

Many people now claim to have an intolerance or be allergic to some foods but statistics show that actually they are not as common as believed. What may be happening is that some people might be intolerant to the way some products are processed and not the whole food group. So for example with dairy products, many people may have a bad reaction to drinking milk a few times and then cut out all dairy products from their diets, which can be detrimental to their health. They may in fact be intolerant to the way that the milk is processed or even a certain brand. I have this problem with milk and have learnt that I can tolerate it in small quantities such as in tea but not in larger quantities. Therefore I get my calcium intake by having soya milk. As for other dairy products I don't have any problems with. Well apart from ice cream but that seems to have improved as of late. Oh it has been such hard work trailing that! I do sometimes find though that I am better with cheaper brands than more expensive ones, so again it could be an issue with the way it is made. Cutting out a food group entirely can really affect your body and if you have any suspicions about allergies or intolerances a doctor and/ or dietitian should always be consulted to monitor your health and responses. I know a few people with ME and Fibromyalgia try gluten free diets with varying responses in improved energy levels but again always check with a doctor and make sure you are monitored throughout. Most doctors and dietitians will also be able to guide you on starting to reintroduce certain foods from that food group to be able pinpoint where exactly the intolerance stems from. This way you can avoid the foods that make you ill but still get the health and dietary needs from eating that food group. Not sure where ice cream places there.

A good 'diet' should provide all the vitamins and nutrients that our bodies need and should always be the first port of call if you discover that you have a deficiency in any vitamins and minerals. However sometimes supplements may be needed to help boost our levels and support our immune systems. What I will say is to do this through your doctor or dietitian who have a clearer picture of your overall health and any medications that you are taking that could be affected by taking supplements. Or vice- versa depending on what ingredients your medication contains. For example many gastro resistant or antacid tablets can affect the absorbsion of other medications because they contain magnesium and therefore need to be taken at seperate times. Also taking on too many nutrients can also be detrimental to our health, so it is really important that your doctor can monitor your levels regularly and that you declare any supplements that you are taking to your doctor.

As I mentioned earlier foods that have high levels of anti-oxidants can be good for supporting our immune systems and help keep nasty bugs or infections away. Because let's face it having something else do deal with is never great and can lead to flares or even worsen our health for some time. Yes I'm talking about you nasty chest infection! According to www.bbcgoodfood.com the top ten immune system boosting foods are blueberries, carrots, lettuce and salad greens, beetroot, Brazil nuts, grapefruit, garlic, cranberries and ginger. So you may want to regularly include them in your diet.

Other tips that I learnt for trying to boost energy and stamina levels as much as possible include to always eat breakfast. How many sayings are there about the value of eating breakfast? And it's true. Think about it, supposedly you have been sleeping all night, (you can see why I say supposedly) therefore when we wake up our blood sugars are at a low and we are in need of sustenance to be able to get through the day. Again if you can combine a slow release carbohydrate here with fruit or a protein then you are giving yourself some good nutrients to maintain good energy levels. So for example, porridge with blueberries or wholegrain toast and an egg or beans. As well as food, being aware of what we drink is also really important because dehydration is detrimental to fatigue levels. So make sure that you are drinking plenty of water. Be wary of fizzy drinks because the sugar content can again give you a rush of energy that can lead to more fatigue and may also contain caffine. Caffine intake should be avoided after around 4pm to help you to fall asleep. Many people with ME have problems drinking alcohol and tend to avoid it but be aware that it is often a hidden source of calories and can actually cause the body to become more dehydrated, causing fatigue. Lastly make sure that you eat regularly to maintain energy levels. The dietitian at clinic recommended eating every 4 hours as this coincided with the bodies natural dips in energy, apart from over night of course.

So I have talked about what we need to be eating in order to keep as healthy as possible. However I do realise that when you have a chronic illness that eating healthily can sometimes be difficult. If you are a  sleepy bunny like myself then eating three meals a day can prove difficult, let alone every 4 hours. Then of course there are the practicalities, such as having the energy to shop for and prepare food. But that is all for another post, where I'll discuss more about these practicalities. If you have any tips that you think will be helpful for how to make life easier with the practicalites of shopping and preparing food then please post a comment. Hope you have found this post helpful.

Tuesday, 13 August 2013

What is Fibromyalgia?

A diagram of the tender points apparent in Fibromyalgia from Arthritis Research UK

Now I know a lot of you will know exactly what Fibromyalgia is, unfortuntely, and I mean unfortunately if you are suffering from it- because then you know all too well what the condition entails. But in the purposes of education and in light of my recent 'diagnosis' I thought I'd write a post on it, as I promised I would. If anything it will help to educate me too and the more answers and information that I have the more that I can help myself. Remember knowledge is power.

Fibromyalgia can be commonly referred to as FM. So as I said in my post 'the rheumatologist appointment' some doctors and clinicians will class fibromyalgia in the same 'umbrella' as ME. But I would say that is only really possible if you already have ME, because established ME can lead to a diagnosis of fibromyalgia (more to be said on that later). However it is possible to have fibromyalgia on it's own.In fact fibromyalgia is thought to to be quite common. According to Arthritis Research UK that figure could be as high as 1 in every 25 people may be affected. Quite a shocking figure really. Surpassing figures for rheumatoid arthritis and it can be just as painful if not more so. But at the same time I fear that with such a high figure it could trivialise the condition somewhat. In terms of coming across many people that would say "Oh I have fibromyalgia and I just get on with it" type situations, as I'm sure many people have come across. However there is of course varying degrees of the severity of the condition and of some of the other symptoms that can be associated with the condition.


So let me actually answer the question 'what is fibromyalgia?' Well answer it as much as it can be answered. Fibromyalgia is a condition that effects the muscles, tendons and ligaments, causing widespread pain. In order for it to be diagnosed you need to have been experiencing the pain 'long term,' ruling out any injuries etc where the muscles should have repaired themselves. Thus rendering it a chronic condition. The Fibromyalgia Association UK describes the composite of the name fibromyalgia as '"fibro" for fibrous tissues such as tendons and ligaments "my" indicating muscles and "algia" meaning pain.' So quite self explanatory really. Fibromyalgia is also recognized as a syndrome which again the Fibromyalgia Association define as 'a collection of symptoms rather than one specific symptom or malfunction.' This can also make conditons hard to treat as there are many things to take into consideration. 


Fibromyalgia can also be recognised by pain in certain tender points that can be seen on the photo at the top of this post. These areas can be extremely tender to the touch, even gently as I think I have conveyed clearly in many a whiney post and is the reason I am writing this post on my phone, because I can't handle the weight of my tablet on my legs. Someone with fibromyalgia will usually have 11 or more tender points. The pain will vary in severity from time to time but can be described as an aching pain or a burning sensation. Often it can feel like having sunburn. I quite often feel like my muscles are pulling away from my bones, which is probably a sign of the tension in the muscles. The pain can prevent sleep and can cause nausea.


Although pain is the key symptom of the condition as I said it is a syndrome so there are other symptoms that again vary according to each patient. Namely fatigue but other symptoms as well as pain of course include:

*sensitivity to touch

*sensitivity to hot and cold

*sleep disturbances

*poor circulation

*sweating

*swellings

*tingling 

*headaches

*low mood

*forgetfullness and poor concentration

*irratible bowel syndrome

Just to name a few but there can be plenty more. So fibromyalgia can be diagnosed by the long term presence of pain, especially in the tender points and the existence of other symptoms and then of course ruling out other conditions such as rheumatoid arthritis, MS or a vitamin defiency. A blood test for muscle damage and wastage as well as to look for any inflammation is usually the first port of call. This is because research has shown that fibromyalgia is not a degenerative (where the muscles waste) or inflammatory condition. This also means to use a highly annoying phrase 'that there is no physical reason for the pain'. As I explained before the pain felt through fibromyalgia is a hypersenitivity in the way our brains process pain signals. So for example feeling in agony by doing something that should not hurt.    But of course that doesn't mean that it's all in our heads the pain is still very real and should be treated as such. In particular using drugs that will help hypersensitivity and how the brain is processesing the pain signals.


As I mentioned in the post 'the rheumatologist appointment' fibromyalgia can be caused by a sleep disturbance and thus not getting enough restorative sleep. Leaving our muscles unrefreshed and the reason for all over fatigue too in fibromyalgia sufferers. Therefore the treatment for fibromyalgia is often sought in helping the patient get better sleep. Through medicines such as amitriptiline and also lifestyle changes like establishing a sleep routine. More information on trying to aid better sleep can be found in my post 'things I learnt at clinic: physiology and sleep.'


In the booklet that I recieved from the rheumatologist it tells of an 'experiment where healthy volunteers were woken during each period of deep sleep, a number of them developed the typical signs and symptoms of fibromyalgia." Demonstrating clearly the connection between sleep disturbance and fibromyalgia but also the importance of sleep on our overall health. However as these were healthy candidates their symptoms soon eased once there sleep pattern went back to normal. But because many people with fibromyalgia also have other health issues such as ME, that can play havoc with sleep patterns, or a long standing sleep disturbance that has gone undetected and untreated our bodies won't heal as fast. Or without getting the quality of sleep needed to help the body heal and treat the other symptoms. But other causes are thought to be after a viral infection, physical or mental trauma such as a car accident or bereavement, or following a long period of stress and anxiety.


So some treatments that are available for fibromyalgia sufferers are:
*pain killers
* drugs to help with pain and sleep
* antidepressants to help with anxiety or depression which could again could cause sleep disturbances
* Medication like gabapentin, which affects the pain signals

Other than medicines though there is:
* physiotherapy
* occupational therapy
* gentle excercise (note I say gentle! But again depending on the severity of symptoms in each individual)
* healthy eating
*mindfulness
*a good sleep routine

As well as complimentary therapies such as:
*massage
*aromatherapy
* accupuncture
* reflexology

Find something that works for you and helps improve your pain levels. Remember what works for one person may not work for another but hopefully there is something for everyone. It is just that fibromyalgia varies between sufferers. And like I have said before don't be afraid to visit your doctor frequently and to find a doctor that will work with you and is easy to talk to. Make sure they have the full picture in order to give you the best treatment for you. 


So there you have it some information on fibromyalgia. I hope that it has been informative. Below are some websites for further information.

Www.fibromyalgia-association.org
Www.fibro-wales.com
Www.fibroaction.org
Www.arthritisresearchuk.org

Sunday, 11 August 2013

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.