Packing your hand luggage

Photo source: Sian Wootton

Some things I'd pack in my hand luggage. It's by no means complete just what I had to hand for the photo. The amount of medication shown is a clear indicator of how incomplete it is!

What you pack in your hand luggage is really important when travelling, especially on a plane, as you don't have access to the rest of your luggage (if you have any.) Not only is this for security reasons; we all know the long list of rules, but also because for you as a chronically ill person it will contain your 'spoonie survival kit'. Nothing to do with safety; I'm not saying pack a parachute, just all your essentials to make the journey as comfortable as possible for you.

So there's the first 2 rules of packing your hand luggage always adhere to security and airline guidelines and importantly always pack your spoonie essentials. Anything that you rely on to ease symptoms. I'll put a comprehensive list further down in the post.

Your first port of call is medication. Not just what you need for your flight but for your whole holiday. It's always best to keep them with you. See my post dedicated to it here.

Photo source: Sian Wootton

Funnily the amount of medication you have will probably dictate the bag you choose and what else you can fit in. And let's face it that's A LOT of medication. Some airlines do allow you to go over your baggage allowance if you have exceeded it due to prescribed medication. Check the rules of your airline though. You can see this in my post on special assistance here. 

The type of bag you take depends on your preferences and whether you are travelling hand luggage only or not. I know many people now have carry on sized suitcases on wheels (hence why no one can stow their bags in the overhead bins.) I've never used one myself, either travelling as an able bodied passenger or disabled (but I will do a post dedicated to it as may be useful for others or myself in future.) Mainly because I don't find them practical. Especially while they had the one piece of hand luggage only rule. It would annoy me to keep going in and out of a case for documents or my purse etc. From a wheelchair user point of view I don't see how they're very practical either. It depends though on who is travelling with you. For example when I went away with my parents and sister my parents pushed 2 cases each with a rucksack and Mum's hand bag. While my sister had on her rucksack and pushed me with my hand luggage over the handles of the wheelchair. So easily manageable. Should you need extra help though add this to your list of requirements for special assistance. Someone can then help you with your luggage or extra mobility aids you may have (remember you are entitled to 2.) In my opinion a bag that you wear across your body, if you are able bodied, to keep your hands as free as possible to pull your case and get things from the bag, is a good option. Or a bag with big handles can work well to put the handle of your case through. A bag with a long strap (again suitable for wearing across your body) is good for hanging on the back of your wheelchair without it catching on the wheels, as it would just using the handles. This is how my bag as shown above got scuffed, which makes me sad and why I put the longer strap back on it, as it's a great bag to use for hand luggage. 

Photo source: Pinterest

The other reason I like to use a bag rather than a case is that I prefer to have my bag under the seat rather than in the overhead bin. I just prefer knowing that it's there and I have everything to hand which can be reassuring when you have a chronic illness. Another solution though would be to have a smaller bag with all your immediate essentials that you can have with you and your main bag stowed away. If your airline only allows one piece of hand luggage then just keep it in the larger bag until you get to your seat. 

Having your documents as accessible as possible is really useful. I used to keep all my documents that I needed for the outgoing journey in a plastic wallet and all other documents such as reservations, transfer details etc in another. The envelope type wallets are best, as I discovered after an incident with a ring binder type plastic wallet and a bottle of water. Luckily not too much damage was done but that's the last thing you would want. So I would have flight booking/boarding card, passport and repeat prescription together in one wallet to begin. Then at some point during the flight I would move transfer and hotel reservations into that wallet with my passport and put the used documents to the back of the pile. I was so organized I had each document placed in order of when they'd be needed. Including documents/ tickets for any excursions/ attractions. Then simply putting that days needed documents into the spare wallet to carry in my handbag. Keeping the rest safely in the hotel. Another option is to use a bag that ties around your waist. A bit like a bum bag but specially designed to carry travel documents/ valuables.

Photo source: Amazon

One disadvantage to using a large bag though is often you can find yourself rooting through it for ages, trying to find what you want. And let's face it there will be a lot in it. Whilst researching for this post I came across these (above) handbag organizers on Amazon. You simply put them into your bag and fill up the pockets. Meaning your things are more organized and therefore easier to find.

Photo source: Sian Wootton

Also remember that any liquids you pack need to be under 100ml each, this is particularly of note if you are only using hand luggage. Make sure your toiletries are within regulation. The great thing though now is the variety of travel sized products available, from toothpaste to hair gel. I'm hoping to do a separate post on travel products soon. Or you can buy empty plastic travel sized bottles to fill with your favourite products. If you wear contacts then again be careful of the size of your saline solutions. 

Remember all liquids must be kept in a see through bag. I like to use the one above. It was from a gift set of Charles Worthington travel size hair products. The above items are just what are in it for now. However when flying I use it for some aromatherapy roll ons to help any pressure headaches and calm me down. My biofreeze roll on for any sore muscles, which inevitably happen. Anti bacterial hand sanitizer gel is also great for planes. Also I pack a moisturising lip balm, like carmex as the filtered air on planes can cause dry/ cracked lips. For this reason I know a lot of people also carry facial moisturisers. There are a lot of moisturising/energizing spray products that claim to be great for use on planes, however I think you need to be careful how you use them. Spraying products on a plane seems a bit rude to me. Us spoonies can have a strong sense of smell anyway but subjecting others to it when there is no fresh fair seems a bit unfair. That could just be me though. I guess a way to get around it is to spray the product onto your hands first. Also, if you're using a tube of moisturiser be careful of the air pressure expanding the tube and causing it to rush out when you use it. I know a lot of people will also keep the majority of their make up in their hand luggage too. 

Some spoonie survival essentials to pack in your hand luggage include:

Neck pillow (I have an inflatable one which saves space but is still comfy)

Over ear headphones/ear defenders (to block out plane noise or noisy passengers)

Flight socks

A extra pair of socks in case of cold feet or a small pair of slippers

Straws for your drinks if you struggle to hold your cup

A scarf/ pashmina is a great way to keep warm

Travel sickness bands

Essential oils 

Heat pad (one of those stick on ones)

Face wipes/ wet wipes (great for keeping fresh or cool) 

Sunglasses ( for light intolerance especially if sat by a window, a hat is also good for this)

Snacks (eat when you need to not just when the trolley comes around)

Drink (to be bought in departures or if you have a filtered water bottle fill it up in departures)

Photo source: Pinterest

My next post I will be sharing a more comprehensive packing list. 7 weeks to go and I'm starting to pace and prepare myself. 

So stay tuned. Please also feel free to share your own travel tips in the comments too.

Sian x

Some useful tips for travelling with a chronic illness: medication

We all know that when you have a chronic illness medication becomes a big part of our lives. In truth it's probably my method of telling the time. You get through the day by going from one lot of medication to the next. So when you go on holiday guess what is going to end up taking most of your baggage allowance? Like a travelling pharmacy.

So here are some tips to help plan all things medication for your holiday:

1) A few weeks before start working out how many tablets/ medicine you will need to take with you. Or ask someone to help with this.

2) Make sure you order enough medication to last you for the holiday and around a week or so afterwards (incase you are struggling after the holiday) from the chemists.

3) Always factor in taking a few days worth more, just to be precautious of any delays and not having enough medication. Better safe than sorry.

4) The same applies for pain killers. Take the maximum daily dosage that you are allowed with you (even if you don't take that many currently), again factoring in a couple of days extra. Note that due to the change in routine and travelling you may initially experience more pain, so it's always best to be prepared.

5) Make sure that you carry a printed copy of your list of medication, a repeat prescription for example, with your name on and keep with your medication. For some countries you may also need a doctors letter. This is so that they can be identified at security. It could also be useful should you need medication or medical attention whilst on holiday. Having the list could be beneficial especially in a foreign country and you are in no state to be listing your medication should you need medical attention.       

6) In the same vain some would say that you need to keep your medication in their labelled boxes. However that could potentially take up most of your baggage allowance. I have read that if you go over your hand luggage allowance due to medication then you will not be charged as long as you have documentation. Check with your airline. Try to put as many as you can in each box to save room and keep tablets in their blister packs to be identified. Loose tablets will need to be tested more stringently 

7) For liquid medications again check with your airline for their policies. They will often be tested at security too. Again a prescription or a letter from your doctor is needed.

8) For syringe based medication, insulin, epi pens etc make sure again they are clearly labelled and inform staff about them and show your prescription/ doctors note. If you need to dispose of any syringes onboard ask a member of the cabin crew for the sharps box.

9) If you have medication that needs to be kept in a fridge discuss this with your airlines special assistance team ( see special assistance post for contact details). Many airlines cannot store medication in an oboard fridge but will sometimes fill a cool bag (provided by you) with ice to keep it cool. Discuss this also with your pharmacist. This advice is from British Airways page.

10) If you need to use onboard oxygen this can be arranged with special assistance. Airlines cannot carry oxygen cylinders in the hold or cabin but can transport personal oxygen concentrators. 

11) For any medical equipment discuss this with a member of the special assistance team. Ask whether it counts as part of your luggage allowance or not.   You can use personal oxygen concentrators, cpap machines and personal dialysis machines onboard. Generally they will need to be switched off for take off and landing. Also ensure they can run off a battery as any powerpoints on board may not be sufficient.

12) In order to be considered fit to fly unaccompanied you must be able to administer your own medication. You can learn more about the fit to fly regulations on the airlines website.

13) It is reccommended that you keep your medication in your hand luggage just incase of delays or your bags going missing. Insulin must always be kept in hand luggage as it will freeze in the hold.

14) Additional medication- Consider packing other tablets that may be useful whilst you're away. A good insect repellent is always useful, the stronger the better and bite cream. An antihistamine such as piriton. Immodium and rehydration sachets should you get deli belly. Suncream of course (although not strictly medication)   I would advise using a higher than usual factor due to extra sensitivities and because we do not get as much sunlight being stuck in bed. And some aftersun just in case you do burn. Sudocream is also great or witch hazel gel. Or athletes foot cream is a good trick to use to take away any burning. Not that you want to burn as it could make you more ill. I alsoreccommend some throat lozenges. The day after flying I always get terrible sore throats from the filtered air on the plane.

16) Some medications may be illegal in the country you are travelling to and therefore you may have difficulty getting them into the country. Research may need to be done on some medications and you may need to discuss this with your doctor and pharmacist. You can check on the countries embassy website. Countries such as the United Arab Emirates are very strict and ban the import of some prescriptive drugs other than by hospitals. This can include codeine, cold and flu remedies such as tixylix and those containing sudoephadrine, tramadol, diazapam and prozac. I found a link (it is by US Embassy for the UAE) with a list of banned medications in the UAE. I will put it in my useful links page as again my phone is being annoying. Tripadvisor also has useful forums on this topic. Before booking it would be best to check this and maybe decide on a different location. Also remember that you may be travelling through a country as part of a stop over to another, Australia for example. Australia also require you to declare any medication before hand. 

So there you have it! My tips and advice for taking your medication away with you. (Sorry this bit is in bold too, editing on my phone and it won't let me switch back).  Remember if in doubt always check with the airline, better to be safe than sorry. Especially with something as important as medication. 

Anymore tips are gratefully recieved. The next post in this travel series is all about Packing, so stay tuned.

Sian x

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

What's on your bedside table?

I know most people will answer this with a lamp, an alarm clock, mobile,watch and perhaps a book or two. However for the spoonie our bedside tables become hosts to all kind of paraphaneilia to help us through the days and nights. We may not need an alarm clock anymore but there is a whole host of things that we need to have close by. A spoonie toolkit of sorts. So let me talk you through some of the items on my bedside table. I've also posted a photo at the end of the post.

I keep all my bits and pieces in a clear plastic box, £1 from Poundworld, bargain! Other retaillers are of course available. They used to be in my drawer but I can see and reach things much easier in the box and plus drawers can sometimes be diffficult to open on bad days. Everything needs to be as accessible as possible. In the box is:

1) Baby wipes- much needed for help to cool down when I'm a complete sweaty Betty and also for when you can't have a proper wash.

2) Medication- I don't have it all by my bed because sometimes I get confused and also because there are so many that there would be no room for anything else. But I have a few in a pill box.

3) Headphones- I have some over ear ones as they're more comfortable but could probably do with proper ear defenders. These are for days when everything seems really loud and difficult to process or when my neighbours are doing yet more DIY. I have tried ear plugs too, sometimes with the headphones but they seem to make my head pound and pulse really loud in my ears, which is just as horrible

4) Biofreeze Roll on- for muscle aches, especially in the neck and shoulders

5) 4head roll on and tiger balm- extra help for tension headaches.

6) Tissues- the usual reasons, plus cleaning up when shakey hands have left your food/ drink everywhere.

7) Olbas oil- fab for when you have a cold or blocked nose. I like to put a few drops on a tissue and put it under my pillow. Or if I have ear ache rub, some into my ear lobes and jaw.

8) Lavender spray and roll on- good for helping promote calm and sleep. The roll on is again good on your forehead for tension headaches. Just be careful it's not too runny.

9) Mints- Incase any fitties drop by in need of a snog, haha if only. In reality they're good for helping a poorly tummy.

10) Purse- for making online payments etc. Always handy to have it there so you don't have to go searching and wasting energy if you don't have much.

11) Lip balm- some tablets make you really thirsty, which can crack your lips, also occurs from spending a lot of time in bed and feeling run down. I like to use Carmex as it's good for healing the skin and also some good old Vaseline for moisture.

12) Hairbrush and bobbles - well for attempting to make some effort with my hair and tying it back out the way when my temperature soars or I need some roll on on my forehead, neck or shoulders.

13) Pens and paper- you can never find a pen when you need one, so it's good to have some handy along with some paper to write down things to remember incase of brain fog.

14) Straws- always handy for when holding a cup feels to heavy, so you can keep easily hydrated. Yet to experiment with one of those builders hats with the can holders and wiggly straws.

15) Antibacterial hand gel- Stop those nasty lurking bugs and of course great if you can't get back and to from the bathroom and need a commode.

16) Other bits and pieces- I have a pair of scissors and also some sellotape. Scissors are useful for when I have parcels to open ( woo beads!) and I have the sellotape to help when I send parcels of my own.

Of course I also have a lamp. It has an easy to use button on the wire, which is useful for weak days. I always have a drink and a bottle to refill it from, even if I can't always do it myself. Then I have my tablet close by, in the well thing under the drawer, for browsing the internet and blogging. Books or kindle are usually on the unused pillow. You know I love to read. And most importantly my mobile phone, which is my life line. Helping me to communicate with friends and other spoonies online but also to text my parents if I need anything from downstairs and I am stuck, sometimes literally. Another useful tip is to have an extension cable on that level to make it easier to plug things in an out of. Maybe keep your chargers in the drawer. I like to hook the connecting ends of the chargers through the drawer handle so again they're easy to reach and your not flailing about trying to find them.

So there you have my toolkit. My other essential item is of course old faithful, my hot water bottle but that is usually strapped to me somewhere. What do you have on your bedside table as part of your spoonie toolkit?

Best wishes
Sian x

Grump

Just a short post about the last few days because once again M.E is surprising me in new ways, how generous of it? Wow I have been grumpy these past few days. My sleeping pattern is all over the shop, mostly during the day though to be fair and it is driving me a little bit bonkers. Again I have been kept awake throughout the night in horrible pain in my legs and back, which makes it impossible to relax enough to fall asleep. So I have been mostly trying to get some sleep when I can or I'm just so exhausted that I have no choice in the matter.

Since starting these tablets neurontin I have also been feeling quite nauseous but it's hard to tell if that's just the tablets or that I am overly tired as well and not eating very well. M.E really does mess up your whole body. It feels like you try to deal with one thing but then something else rears it's ugly head. It is a non stop vicious cycle. Lately I have also been hypersensitive and not in the crying at the drop of a hat hypersensitive way, although I have been close to tear on a few occasions where I've not had enough sleep and I'm just lying in an exhausted heap. It feels as though all my senses are just on overload. Obviously there is the pain but one minute I am sweating like a pig and the next I am freezing cold. I have become so sensitive to the cold that I have had to wear long pyjama bottoms and socks in bed. The other night I had a pair of 3/4 length pyjama bottoms on and my legs were really cold. It wasn't even a cold night. But because they were so cold it made my legs stiffen up and hurt all the more and just that sensation of being cold was keeping me awake. It's weird. I've never had that before, not even in winter. My hearing too has been on over drive, everything just sounds 10 times louder than it usually would. It hasn't helped that my next door neighbours daughter is moving house and they have been packing and moving and slamming doors for 2 days from 7am. Then tonight they decided to have a party next door. Ahhh have it in your new house!!! See I am a grumpy bum. Of course they should be celebrating and it wasn't all that late. Then at the same time there was fireworks going on over the road. Honestly I was ready to just break down. What an absolute party pooper. If I could walk better and wasn't on my last legs with exhaustion I would have had the mind to go round there and just cry in their faces. Oh dear me. I very rarely get like that, only if  I have one of those really bad migraines where the whole world must stop and be quiet but for the last few days there has been times where I thought people were out to get me. Even the fridge! Honestly it has been so loud, well what I am perceiving to be really loud at the moment that last night I thought that someone was playing really loud music. When I went to investigate and found out it was the fridge I was a bit shocked and slightly embarassed.

At times my heart has felt like it has been racing too and just thumping in my chest, mostly when I am disgustingly tired though. But how are you supposed to sleep when whenever you lie down you can hear your pulse in your ears and your chest is jumping. It's impossible. Then you get all the more frustrated and tired and your pulse quickens. It really is a vicious circle and can be really scary. Especially when you have'nt experienced that symptom before.

It just goes to show I guess how much we need to sleep healthily. It really does affect us in strange ways and turns us into people we do not recognise. Then add that into the mix with M.E and who knows what you're going to get. Everyday  is different and a learning curve and when you start to experience something new it's easy to feel like you are right back at square one or just curse "what now?" And when you are overly tired it just becomes even worse.  However onwards and upwards with the fight. At least I can laugh now at my Diva strops at the fridge. "How dare it?!"

Thing's I learnt at clinic: Personality

I was really nervous about going to the M.E clinic at first. I thought that I would turn up and everyone would just look horribley ill or be in wheelchairs. I was stil quite weary about meeting others with the same condition back then, somehow I thought that it would just make it too real. I'm not too sure how to explain it or why I felt that way. Call it denial or perhaps even fear: a fear of what was perhaps to come for me: a fear of not being able to relate to anyone else and an overwhelming fear of falling asleep during the session and seeming incredibley rude. I even joked that the waiting room would be full of people fast asleep, strewn out on the seats, like when you see elderley people fast asleep on their sunbeds on holiday with their mouths wide open and a book on their chests. However I got there and everyone seemed well 'normal', the epitomy of that tiresome phrase 'but you don't look sick.' I have since discovered that this is what is known as a spoonie. According to the Urban dictionary www.urbandictionary.com this is the name for a person that suffers from a chronic illness but doesn't look unwell, according to Christine Miserandino's spoon theory. More accurately this theory describes what it is like to live with a chronic illness in comparrison to a healthy person but I will go into that in more detail in a future post as it is very apt and could possibly fill an entire post. Anyway less about spoons and more about clinic. It was only when I heard people checking in at reception for the M.E clinic that I could tell what they were there for. The others I couldn't tell whether they too would be in the group or waiting to be called through to a podiatry appointment. Somehow this relaxed me and I began to hope that the group would be less about comparrison and "who has it worse" and more about support and insight.

There was 10 of us in the group, 9 females and 1 male. Lucky man right! Well not really no as he was blighted by M.E of course and if I was feeling like I couldn't relate to anyone then I definiely bet he was too. Apparently though this is a common occurence as statistically the composition of M.E sufferers is made up of 80% women. So why are women more likely to have M.E? Not wishing to alarm any ladies out there, so please do not scare yourselves. Could it be down to stereotype? That our personalities are so different to men's, the whole Men are from Mars, Women are from Venus concept. Well let's examine that: or more accurately let me relay what I learnt about that as the post title sugests. Now if anyone thinks that people with M.E are just plain lazy, can't be bothered or 'lucky' that we get to spend so much time in bed or resting, or not work then think again. Before most people develop M.E they are hardworking, successful, dedicated, compassionate people that will always strive for the best in everthing that they do for themselves and others. We take on many roles at work and at home, being many different things to different people. For example Mothers, Fathers, housekeepers, Husbands, Wives, bill payer, worker, boss, friend etc etc. The list could be endless. Generally someone with M.E will have more than 3 roles that take up a significant proportion of their time. This is where the theory about why more women than men develop the condition could stem from as women seem to take on more roles than men. Modern women in particular are striving to do everything and be everything to everyone. No longer shackled to the kitchen and surrounded by constant media feeds about successful women. We are almost programmed to think that we can take on so many roles, at home, at work, with family and friends. Blending being successful at work with being a home owner and family woman, domestic goddess and having an amazing social life. And why shouldn't we? There are plenty of women out there proving that women can have it all if they want it and good for them. Let's face it in this economic climate how many people can afford not to work or rely on government money? However for some of us we simply get streched to thin, playing all these roles and often putting others needs before our own that we neglect ourselves and never rest. So stereotypically, without being sexist as there are plenty of men out there that can identify with this, not the being mothers and wives bit of course though, it is easy to see how women fall into this category. The idiom A woman's work s never done springs to mind.

Whilst we were in clinic on that first session  we got asked how many of us identified with the following statements:

" If something's worth doing it's worth doing right"

"I've started so I may as well finish"

"I'll do it myself, I'll only have to check it anway"

Hopefully you catch my drift I have been trying to remember them and then think of similar phrases of a similar effect but my brain has gone blank. Basically they were phrases that suggested that only you could do it and that things can't be left half done or completed half heartedly. For example if someone else has done the hoovering then you may feel like they haven't done a good enough job and that you should have just done it yourself so that it would be right. When asked how many of us agreed with these statements though all of us put our hands up or the majority at least.

It could be argued that this means we have what is known as type A personalities. A type A personality is a term that was coined to describe ambitious, highly driven, successful people. Back then it was generally associated with business men but now more and more women are fitting that description. It also has negative connatations such as being highly strung, impatience and having agressive tendencies and has therefore been the subject of many studies into heart disease. But before anyone goes off into a panic because they have type 1 tendencies and fear having a coronary this research failed to take into account  diet and age and it's main demographic was managing directors etc. Plus we all know that stress has a negative effect on the body. We are simply not designed to cope with constant stress. 

Personally I know that I have a lot type A tendencies, well I say have but I am mostly referring to before the onset of M.E. Now of course that's just a bit too tiring and there is less stress. I was hardworking, constantly on the go, striving for the best for myself and going out of my way for others. I rested only when I slept and even then would sometimes wake up in the night my brain full of ideas and I ate and worked at the same time. Never able to just sit and watch the tele without doing something else too. What's more I chose to work in a demanding job, with lots of responsibilty and deadlines to meet as well as looking after others. It was both physically demanding, with long hours and heavy lifting but also mentally intense with lots of paperwork and health and safety assessments to complete. All very type A characteristics. But I loved it, getting there had  been my sole focus towards the end of my degree and as I have said it broke my heart when I had to stop and in accepting that role is a long way off my current capabilities. However I cannot relate to being highly strung, overly impatient and I am definitley not agressive. In fact I'm far from it, I'm pretty placid and nice and many a person would say quiet. That is not to say I'm a push over, I'm determined and quietly confident but have no problem in standing up for myself. Especially the more I found I was good at what I did. It made my confidence soar. I just don't fly off the handle and I have never particularly wanted to be loud or extravert to show my confidence, that just isn't me. Strange for a theatre student! I can head up meetings and give orders but I am more fun loving than a show off and unless I have to raise my voice then I won't. I often think that those that shout the loudest or overly show off are masking themselves. As for impatience well I can happily be in a cue unless I'm busting for a wee and can wait quietly in a waiting room- except the time that I had a major panic attack and was pacing the floor. I would say that these qualities are also true of the other people I was on the course with. No one seemed to be confrontational but everyone appeared to have busy lives, at work or home and identified with the above statements. In fact many of us could not see what was wrong with them. Why shouldn't we do something well? Or make sure a task is finished. Wasn't that normal? Apparently though it is only a select section of people that are switched on to this way of thinking. I still don't really see it as necessarily a bad quality but obviously M.E is beating that right now and I can recognise how it doesn't need to apply to everything. If someone else wants to do something then let them. Without checking or redoing. Of course I could be wrong about my fellow course attendees but that's how it seemed. Some people were more outspoken than others but then we were there to get help, desperate for answers about this maddening condition: it was a good time to be outspoken and if we are angry then it's because M.E has made us so. 

I will admit that I was one of the more outspoken ones because I wanted to get as much information as possible. They had got the nail on the head about my personality but I was adamant that these were good qualities and that I was so proud to have a degree that I had worked so hard for and stepping into a consuming career. When I got home I was absolutely shattered. The sessions can be quite heavy going. It's a long time and there's a lot to take in, not just from the clinicians but from the other members. I also remember that shortly afterwards when I started to digest the information more I got really upset because I thought that I had somehow brought M.E upon myself by being the way I am and I blamed myself badly. This of course isn't true, you can't bring M.E upon yourself. I just had to remember all that I had achieved from having those qualities and how I enjoyed helping others and there is certainly nothing wrong with being happy with yourself. In fact it's really important, especially after having depression and low self esteem. 

Anyway I hope that this has been insightful. Please remember that these are my personal experiences and some personal research. I am not a doctor or researcher just a sufferer who like many would love some answers. I'll be posting some more things that I learnt at clinic soon so keep watch.

So you have your diagnosis now what?

So you're at the point where you have just been diagnosed with M.E/ CFS and can let out a small sigh of relief that there is a name for this monster that's been attacking your body and that it is definitely not all in your head. I'm sure there are very few people that could conjure up this all encompassing and debilataing condition unless they had experienced it. This is not a let's draw some red spots on with your Mum's lipstick and warming the thermometer on a hot water bottle type illness. Although it would be interesting to see Daniel Day Lewis go all 'method' acting for a role about an M.E patient. Then again they'd never get him to set. Anyway now that you have this diagnosis what do you do with it? Who do you see next? What medications do you take? Essentially what do you have to do to get better?

Oh if only we were given a magic lamp upon diagnosis! Because as I have said and as many of you will know all to well, there are no set answers to those questions. The medication that you take depends on the symptoms that you present and using a system of trial and error to see if they offer you any relief or make you feel worse. And symptoms can vary all the time, whether as part of the M.E or side effects from other medication. For example I need to take anti-inflammatories to manage my pain however most anti-inflammatories have an adverse affect on my stomach meaning that I need to take other medicatin to counteract this. This is made worse by the fact that I have a hernia so I have to be careful of that and have had to test different types of pain relieving tablets that manage the pain and do not upset my stomach. Sometimes it does feel like asking 'what would you rather have? This or the side effects?' But keep striving for what works best for you and your body. We suffer enough as it is without anything else being added to the mixing bowl. Who eles has a handbag that resembles a chemist shop?

As for who do you see next, if anyone at all, it seems to be very much a case of a post code lottery and depends on what services are available within your area. This is where you find out how much your local health board acknowledges M.E/CFS. Information on this can be found on www.meassociation.org.uk/?page_id=1382. They note:

'Please remember that while patients can contact any of the services for information, referalls for assessment, diagnosis and treatment must be made by your GP or the professional responsible for your healthcare.'

Also note that these are NHS services. The ME association has a database of support groups on www.meassociation.org.uk/?page_id=1185. As you can see it varies considerabley. Some areas have consultants with an interest in M.E and others have more specialised programmes or services that offer a whole body/ lifestyle approach in groups or individually. Sadly though some areas have nothing. I can only hope that in these areas that there are an abundance of good GP's that take M.E seriously and treat their patients with compassion. It is possible that you will only need to see your GP but again it depends on whether they are up to date with research and can see methods for improvement. Because this is what a consultant or service will offer you. Tested ways of seeing an improvement in someone's quality of life and a vested interest in wanting you to improve with their help. But there is help out there, don't let anyone make you feel as if there isn't. So it all depends on how you respond to different medications or methodologies or of course whether you want to look outside of the NHS.

Everything would be so much easier if there was a set notion of what M.E is? Or there was a typical M.E patient. But because there are so many variables it becomes harder to say what will help each individual and as I have previously mentioned our conditions are changing all the time too. Some people can continue to work whilst others need to cut back or not work at all and then of course everyones lifestyles are different and people are pulled in different directions. People have homes to run, children to look after, pets or caring for others and M.E will probably try to dictate these aspects at some point or another if not consistently. Sometimes it is like a needy child that will do everything it can to get your attention. Like when I was first diagnosed my legs worked fine unless I was extremely tired but now they are in constant pain. So this calls for me needing to access further help and maybe going through that whole rigmarole again of ruling out other conditions and probably landing once again at it's a flare up. It's not that you want anything more to be wrong. That really would be all. Just having a cold and M.E is torture upon torture but at least if the reason lay within the convines of "explainable" medicine there would be a better set of answers.

Surely there has to be something that is explainable. Why else would M.E exist? How can you go from feeling on top of the world one day to a crippled, exhausted heap the next without their being a "reason" for it? Because all your tests come back normal. Ahhhh it makes me so angry. M.E I hate you! I hope someday soon someone exposes all your dirty secrets and you are left quivering in fear as you are broken down just like you have done to me and so many others.

P.S I'm okay, not lost it just letting M.E know that it better watch out.