Anyone want to have tea with ME?

This is just a quick post as I've been feeling extremely rough the last few days (after getting excited over some fab news of all things) and I need to preserve my energies for next weeks fundraising and awareness events. I will continue with my travel series as soon as I can after the awareness and fundraising posts.

However I just wanted to let you know about an event that one of my lovely fellow ME warrier Anna had organized to help raise awareness of the illness and money for the ME Association. She will be holding an actual tea party at her home with friends and family. Not wanting her Spoonie friends to miss out though she will also be hosting an online tea party. You can see the events Facebook page here.

So if you would like to join in it's as simple as well cake. Get yourself a cup of tea and as much cake as you want and log on to social media to post a photo of yourself enjoying your cake with the hashtag #bluesunday. Keep up to date with the goings on of the actual tea party on the event page and chat to other sufferers on there too. Why not chat to someone you've never spoken to before? Expand your circle of spoonie friends. You could even be in with the chance of winning a prize just for posting a photo and of course loving cake. Or you could also win by making a donation. Donations can be made through justgiving here.

Remember to tell your non spoonie friends that you're taking part too. To get the message across for ME awareness. 

Lady Anna, rest well this week and enjoy the day. She will also be sporting some lovely tea party themed jewellery (if I do say so myself) that I made her for the ocassion. See photo below.

Hopefully see you there. I'm off to rest and make the very tough decision of what cake to have.

Sian x

Post Christmas Exertional Malaise

Owww. Ouch! Bleepy bleep bleep bleep. Yes that is how good I felt yeterday. And all because I dared to celebrate Christmas. How dare I try and be normal. Christmas Day wasn't too bad I spent the majority of Christmas day in bed resting and then came downstairs for a couple of hours in the evening. It was strange though excluding myself from dinner (even though I cannot tolerate it) but it's difficult to not listen to that voice that says that you should be joining in the festivities and that you are being completely unsociable. But it was the right thing to do, to help myself recover from Christmas Eve. Boxing day my symptoms were more prevelant, aching and fatigue. I managed to have a bath with help in the afternoon, trying to make the most of being able to get to the bathroom and not wanting to smell of course. I rested again afterwards in the hope of getting downstairs again that evening. Remember my basic target is to get downsairs everyday. I managed to get to the top of the stairs and went to shout down for help to get down, but that just ended up as a "help, me stand up and get back to bed." I was in too much pain and exhausted to manage it. It made me quite dissapointed as I was bored lying in bed and wanted some company but in the grander scheme of things that's the first time in a long time that I've not managed to get downstairs at least once a day. And I had a pretty good reason for not being able to. So I wasn't too down on myself.

Boxing day night the wind was terrible, but luckily I was so shattered that I managed to sleep well. I think though that listening to the wind made me huddle up more in bed so trying to get up yesterday morning was just agony and I couldn't do it without help. Damn bladder again, I would have stayed where I was if I hadn't needed to pee. I'm sure my Mum appreciated the 5am text for help too.

Yesterday (27th) was probably the worst suffering wise, all my muscles ached and my pain killers weren't having much of an effect. I thought though that if I could try and move around a bit it may help to loosen up the muscles and distract me somewhat. Luckily I managed to bum shuffle downstairs and plonk myself in front of the television for the afternoon. Woo back to back Cake Boss and the Downton Christmas special! This made the suffering more bareable but I was still clock watching for my next lot of pain killers.

One thing that did really help me through the post Christmas suffering though was the support of other ME suffers on Twitter. We all knew that we weren't the only ones in pain and could help each other through. I have 'met' some lovely peole on there, one even sent me a handmade personalised bracelet as a Christmas present. It's good to be able to reachout to people that know exactly what you're going through and can help you to see some brightness. It's also lovely to be able to offer support to others and feel part of a community, which is difficult when you can't socialise often. It's difficult to cope with the feeling of being punished for just trying to be 'normal.'

So enough of the rubbish and let me focus on the good. Because it's really important to find something bright in each day even though on the whole the outlook is bleak. Well actually Christmas Eve was filled with lovely moments and I was able to do as I planned (see my post It's beginning to look a look a lot like Christmas).

The day started earlier than planned as my nephews came round earlier  so I lost a couple of hours rest. But I hate not being 'present' when my nephews are here. It's easy to get into the mindset though of 'I'm just sitting.' They came round early as they were full of cold and then of course in the spirit of Christmas generousity kindly gave me a cough. I love them really. Then everyone else kind of arrived at once. I met my cousin(ish)/Polish Goddess's new boyfriend (Hi Jon!) and cue giggles and some very in depth conversations about ME and mental illnesses. And how horrified we were about the sign language interpretter at Nelson Mandela's funeral being mocked. That man has reached the most prestigous height in his career to have been given the duty of such an event despite all of his demons of such a misunderstood illness. He was left on his own whereas they should work in teams infront of the worlds media and some of the worlds most powerful people yet he fought to get through, he couldn't very well leave the stage. How many people when faced with trauma and distress could keep calm? Schizophrenia does not make someone a violent person. If he had suffered something physical on that stage he would have had sympathy but instead he was mocked. Okay, sorry for going waaaay of topic. It's just something that really riled me. It annoys me that mental illnesses have such bad reputations. Most people that are diagnosed with a mental illness just want to be able to live normal lives and are scared not be labelled.

Anyhow back on topic, perhaps that's where I used up much of my energy. I managed to help myself to some food and feed myself so that was a plus. Most of the evening I was sat with my feet up. At one stage everyone else was in the kitchen and I was the only one in the living room, which felt a bit odd. By the time we got round to giving out presents I was really beginning to flag. I couldn't hand my gifts out and was just sat like the Queen of Sheeba as people came to me bearing gifts. I wished I'd have looked that good and not a baggy eyed zombie moulded to the sofa. I couldn't even open my own presents so my Mum had to open most of them for me. Her trying not to open them and peaking what it was before I got to see. I got one present in a gift bag which I thought I could hopefully manage but someone was a bit over zealous with the selotape and the gifts inside were all wrapped. So tip number one for giving gifts to people with chronic illness or pain; use a gift bag and not seal it shut like an Egyptian curse and you don't need to wrap the gifts that are inside. Tip number two; be economical with the selotape whether it be on a gift bag or wrapped present. And tip number 3; more expensive thicker wrapping paper is very nice but very hard to rip open (yes I know you should unfold it neatly) but ripping is easier on our more weak muscles. So cheap wrapping paper is much better for us. Hopefully it hasn't ripped too much in the wrapping and delivering process.

I recieved some lovely gifts. Very thoughtful things that are much needed like new pyjamas, new slippers, dressing gown ( IT'S SO FLUFFY!) and books. A spa voucher, which I'm thinking maybe to treat myself to an Indian head massage and facial. I do enjoy back, neck and shoulder massages but it can be touch and go with the Fibromyalgia whether it does more harm than good. Lying on a heated surface in the sauna and steam rooms should really help though and hopefully I'll be able to manage a jacuzzi. My most touching gifts, other than the personalised bracelet, was the two spoon necklaces I got (see photos). They will remind me to use my spoons wisely and on the people that deserve them. That it's not wrong to put myself first. Or to waste spoons on matters beyond me or people that do not deserve to occupy too much head space. I also feel that in giving me these spoons it's a symbol of the support and understanding they give me. That they are willing to use their spoons to help me where they can so I don't have to suffer as much. Oh wow this is emotional. Are you crying Mother dearest?

Afterwards I was really struggling. I actually fell asleep. Unfortunately or perhaps fortunately it was during a conversation with my cousin and Nanna. I've heard most of it before so I don't think I missed much. My parents tried to get me up to bed with me looking like a drunk being escorted from a nightclub. Getting up the stairs was interesting. I fell asleep and started to slide down. Waking up because of the pain of my parents trying to keep me upright.

So was it worth it? Of course it was. The escapeism of normal life is refreshing. It's good to be included and to join in where you can. Otherwise morale can really suffer and as I have said time and time again I am so conscious of not getting my self into a severe state of depression again. It truly scares me. These moments to spend with family and friends are so important and keep us strong. I couldn't cope without them. I only wish that we didn't have to suffer for it, just for trying to get some normality and fun. It's one of the most unjust things about chronic illness.

So to all sufferers I hope you are resting and regaining some strength. Talk to one another. We can help each other through. But I also hope you feel it was worth it. That you made some lovely memories and had a good time. And for all non spoonies I hope you had a great Christmas too.

Some useful tips for travelling with a chronic illness: Planning

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

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

* Make a check list of all the things that need to be done before you go away. 

  

- arrange travel insurance and inform them of my condition

- book special assistance through the airline

- order any foreign currency

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

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

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

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

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

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

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

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

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

Some helpful tips for travelling with a chronic illness: Research

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

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

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


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

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

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

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

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

* Does the hotel have a lift?

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

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

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

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

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

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

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

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

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

Expectations

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

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

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

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

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

The practicalities of cooking and preparing food; some useful tips

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Topsy Turvey

This post was originally posted in July but it has decided to shift as I edited it. Odd! So any reference to painkillers is obviously out of date.

It is never a good sign when at 3am you are Googling what other pain killers you can take as well as the ones you're already dosed up on. The last 2 nights have just been awful. The pain in my legs has been keeping me awake all night and shown no signs of responding to any painkillers, neurontin and cocodomol, heat or massage. It is truly driving me around the bend. After my trip to the doctors on Thursday he has decided to change the celebrex to neurontin or gabapentin as it is also known, because by now I should have noticed a difference with being on the celebrex for a month, or is it more? To be honest I'm not overly sure what month it is, time has so little consequence at the moment; apart from "when can I have my next dose of painkillers?" I know I need to give the gabapentin time to build up in my system as I am still on 3 100mg tablets a day and then will build them up by 100mg as directed by my doctor but f**k me I am in pain! The muscles in my legs feel like they are on fire and are pulling away from my bones. It feels like I am being tortured on a Medieval stretching devise. Then there are the sharp shooting pains that literally make my legs jerk and just that small movement triggers yet more aching. It makes me naseous. It's small wonder that I cannot sleep. There is no way of switching off and trying to block out the pain. All I can do is to keep up with the pain killers and try to massage away any niggles, whilst accepting that however much I need to sleep, it just isn't going to happen right now. Generally around 7am or 8am as the world is waking up I am beginning to feel the affects of 'pulling an all nigther' so to speak and am finally at that point where exhaustion just takes over me until I am fast asleep and don't wake up again until about 4pm. Even then I generally feel as though I could easily fall back to sleep if I wasn't hyper aware of needing to take my tablets and my stomach grumbling at me with starvation.

This back to front lifestyle is no good at all. As I have just mentioned by the time I have woken up I am overly hungry. Usually my stomach begging to be fed will wake me a few times but never enough for me to come to properly and actually take action. I know I intend to do so but can't open my eyes and just those few minutes thinking about it before I am asleep again is enough for me to have many a dream about reaching for my phone to ask for some breakfast or even more annoyingly, dreaming of actually eating breakfast. Then waking up thinking "oh I've had breakfast today," when my stomach is telling me otherwise. Don't you hate dreams like that? Ever dream that you have woken up and gone to work and then when your alarm clock rings thought " what the hell? But I've done this already."  Cruel isn't it? I used to have this a lot when I was at university and college; I think it's because they occupy so much of your thoughts whilst you're awake that they just seep into your subconscious. Especially when there is a deadline to meet or maybe you're just excited about something. Anyway as I have said by the time that I have come round enough to move and actually put these thoughts into action it is generally very late afternoon (when I have been awake the whole night) and by then of course it is no wonder that I'm starving. I have effectively missed 2 meals and keeping hydrated, not to mention any snacks and this in turn creates more problems. How can you expect to have better energy levels if you do not eat and drink sensibley and by sensibley I don't just mean healthy foodstuffs I mean  eating regularly to support your gastric system and counteracting any natural energy dips and drinking enough (water, not alcohol ;-) ) will keep you hydrated, as dehydration is another arch nemesis of fatigue.

It is recommended that other than during sleep, as in normal sleep at night time, you should go no more than 4 hours without eating something to maintain a flow of energy throughout the day and of course to negate any feelings of hunger, which sends the body into a sort of panic mode. However if you are asleep most of the day all this goes out of the window. It is a battle of needing to sleep, well not having much choice in the matter when you finally can drift off and making sure that you eat, beacause let's face it you need the energy. So it is just problem upon problem. What usually ends up happening is when I do wake up I start making up for lost time and filling my chops, which isn't exactly healthy either as your metabolism is slower of an evening but what are you supposed to do? You're hungry; you're going to fill yourself until you are no longer hungry. It is also even more tempting to fill up on short burst energy foodstuffs, like cake and chocolate because you want that rush of energy but that's not exactly healthy either. I say this as I'm eating a crunchie oops! But treats are also good. In the past I have tried to ensure that I manage to eat 3 meals a day, even if I fall straight back to sleep again soon afterwards, hopefully not during. However when pain is keeping you awake all night and you're too exhausted to open your eyes during the day, there's very little control. Again it is like choosing which one that you need most but then again sometimes that choice is made for you zzzzzz.

One could argue that we do not need to eat that often as it is not as if we need it for the small amount of activity that we do. But everyone needs to eat to suppport their bodies and keep all our systems working and chronic illness or not that doesn't change. If anything we need to support our bodies even more. We need all the help we can get. Plus as our bodies are constantly tuned in to hyper mode, overly sensitive and screaming with pain we are constantly exerting ourselves. We might not be moving around as much but our brains and nervous system are busy, busy, busy. So yes we do still need to eat and drink regularly and lets face it we can ill afford for our bodies to break down anymore.

Furthermore if we are asleep all day then we miss out on even more. Big events like getting out if possible or company and furthermore daylight. No wonder we have no concept of time. Just that glimpse of daylight lets you know the time and helps the body to regulate itself (as in a natural bodyclock). We are all biologically programmed to be awake during the day and sleep during the night. Unless you are a Vampire or indeed an owl. This is why a lot of people with M.E are referred to as night owls, because our body clocks are all awry. Furthermore because we are waking up late it inevitabley means that we will fall asleep later. Unless you are having one of those super exhausted days when you can't help but sleep for 20 hours. Again creating more problems and messing up your sleep pattern even more. It's such a difficult predicament and again one you have little control over at times as sleep consumes your day after a restless night of pure agony.

Then of course there is our moods. Being in constant pain doesn't exactly make us the most cheerful of people at times. It is exhausting and comsuming. Then add this to the lack of company or small activity and again sometimes missing out and it's enough to make you miserable. As I have said my mum works from home and often I will get woken up by the children; one has developed a habbit of going to the bathroom a lot to try and wake me up so I can go play and often I wish I could. I have even been in bed trying to sleep through my family having Christmas dinner and what was worse was that my friend from America was staying with us. What a Nellie let down! Luckily she was very understanding though but I wasn't best pleased about missing out. From a purely psychological point of view there is definitely something to be said about seeing daylight, think seasonal affective disorder, not only does it regulate our bodies but subconsciously it affects our moods too. People are just generally happier in the sun. But if you're in bed all day not only are you not getting out but you are blocking out the sun with your curtains. I say this like we live in a sunny country haha, so maybe I should refer to light not sun. I think this is part of the reason why I see some improvement whilst on holiday, all be it small physically the last time. But I manage to get into a better routine. Sleeping through the night and managing to eat 3 meals a day. Okay I have a siesta but there's nothing wrong with that.

So what are you supposed to do? Well on those days I guess there isn't much that you can do and somehow you just have to accept that. Just try to keep the pain managed as much as possible and eat when you can. I know better than to try and beat sleep like that. Then when you are having better days or a few hours, eat, keep yourself hydrated, if you can get outside for 5 minutes do so- any longer is a bonus and open those curtains when you're not asleep. In the meantime my Greek is coming along nicely and my bedside table resembles a small library. It would be nicer to do them in the day though but you just have to take everything as it comes.

Things I learnt at clinic: Diaries- Also known as how many spoons so I have?

Example diary

I hope you enjoyed reading about the spoon theory. My mum made me laugh by saying "why spoons? Couldn't she have used sugar packets?" Oh Mum I love you although I am probably in trouble now for writing that. Sorry I do not have the answer to that one, I'm sure in her moment of inspiration Christine Miserandino did not really give that much thought into what she used to help get her point across, she just wanted to get her point across. Yes, 'sugars' would be a nicer nickname for us sufferers of chronic illnesses. But could you imagine the complications of enquiring into how you take your tea or coffee? "How many sugars do you have?" "Well I haven't showered today and I drove instead of walking here, so I'd say I have about 8 left." Could get complicated.

Anyway, as Christine Miserandino says it's important to know just how many 'spoons' (I almost wrote sugars then) that you have at your disposal. But how do you do this? How do we open that cutlery drawer in our brains and see just how many spoons we have to get us through the day. Whist I was in clinic they were very keen on us using diaries or charts  but they they weren't just any kind of the diary. Just look for yourselves at the above image. You may think it looks quite complicated but once you understand its intricacies it makes more sense.

Basically it is a chart that horizontally lists the days of the week and vertically the times of day  in 2 hour time slots, excluding overnight- because you should be sleeping. To avoid confusion for you it's my scrawl across the very to, noting the hours that I had slept, as that's important to make note of too. The aim of the diary is to fill in each space with what you have been doing for those two hours. For example Monday 8am-10am breakfast. And so on as the day goes on. They have chosen a time slot of every two hours a it serves as a constant reminder of what you have been doing and how you felt before brain fog sets in or it's the end of the day and you are desperately trying to remember all that you have done that day. Because noting everything down really does give you a better picture of where you are using your 'spoons' without generalising or surmising on the day that you have had. By completing the chart every 2 hours it gives a much more honest picture that will help you more in the long run.

From the image you will also notice that there is writing in both blue and red. This is intentional- there was no pen crisis. This is because what we needed to do was to write in blue ink if were experiencing a bareable level of symptoms, that you have felt okay or hopefully good for those two hours. Or to use red ink if those two hours were awful and dominated by bad symptoms. By doing this every day too it was a way of looking for patterns. Do you mostly have red mornings and more blue afternoons or vice versa? Or a blue day then a red day? It can also help you appreciate that for 2 hours or so that day it perhaps wasn't too bad. Not get to the end of the day and say that it was all completely terrible, because that is how you have been feeling for most of the day.Yes, 2 hours can be a long time and you can very easily go from feeling okay to screaming in pain in that time. If not many times during that time but you can use the colour ink that relates most of those two hours. Let's face it if you had to record things more than every two hours that may get too annoying. Every two hours can be annoying enough.

You will also see that in each space there are smaller boxes with the letter M, E, P and numbers in them. The letters stand for 'mental', 'emotional' and 'physical' and relate to the amount of effort each activity has taken. 1 being the lowest number of effort and 10 being the highest. So let's say that you had been reading then generally you mental effort number will be higher and depending on what you are reading then your emotional effort number could be higher. For example a thriller novel or a weepie. Obviously depending on your symptoms and mood your numbers will fluctuate. So for example if you are reading a thriller whilst being in a lot of pain then your overall numbers are going to be high. If you are in a lot of pain and have been doing something physical then your physical number will be really high, but it will also take it's toll emotionally and mentally too. Of course the key is to when you're feeling in pain to lower your physical activity but that probably comes naturally anyway. But also to not over exert yourself emotionally and mentally too. Of course generally M.E sufferers will generally expell more effort than non sufferers as it is.

But overall these numbers serve to find out what your overall numbers are for each day. So at the end of the day (if you're not too tired) to add up the numbers from the mental, emotional and physical columns and then add them all together for your overall total for the day. This number alongside the colour ink helps you to see how much effort that you can use up without going into a flare, suffer from post exertional malaise or can make you feel not too bad. For example if you feel terrible at the end of the day or experience post exertional malaise, which you would know from the use of red ink and of course because you feel absolutely shocking (don't need a pen to tell you that) then you have probably used up too much effort and can therefore see where you can cut down on your numbers or use up less spoons as it were. So the aim is to find that balance of numbers that allow you to have a completely blue week, where you don't feel too bad. Of course ME is changeable and at times you will have to lower your numbers to coincide with your symptoms. Right now my numbers would be much lower than from the example diary above, as I do very little due to the change in my condition,  certainly physically.

So that is one way of keeping track of how much energy you are using. How many spoons you roughly have at your disposal every day. Likewise you can do it as more of a list. Whatever is best for you? It's certainly good for people in the early stages of ME, when you are so confused and wondering how you can no longer do what you used to. Although it certainly can seem like a lot to have to fill it in every two hours. Lately I have become rubbish at charting my day (other than blogging, that is) but I guess after a while it becomes instinctive. You know how much your mind and body can take. As much as it frustrates the heck out of you.

But I have been so good...

Yesterday was a tough day. Lots of symptoms all vying for attention and not responding to any treatment in the form of pain killers, heat or massage, which left me a little miserable. I did not wake up until 2pm, having only just managed to prise my eyes open for long enough for my Mum to give me my neurontin at 9am and too be honest at 2pm I was all set to roll over and go back to sleep again.  But it was time for another tablet and to make sure I ate, to help my pain and fatigue levels and also it was a beautiful sunny day. Yes Newsflash it is still hot in the UK!

As it has been so nice all week my need to be as active (well you know what I mean) or perhaps I should say that my cabin fever has not been too bad as I have been putting in the effort and somedays it has been an effort to get downstairs and to sit in the sun. To try and let the sun heal some of the aches and pains as it often does on holiday and work its psychological wonders. That is predominantly what my week has consisted of, especially this weekend. Me and Mum have just enjoyed lying out in the sun, relaxing. Well except for when the neighbour decides  to get out his circular saw to cut paving stones and then hammer, hammer hammer them into place and people feel the need to share their dreadful music tastes to the whole village. But I can honestly say that I have only spent my days sunbathing, resting, reading and blogging and watching tv of an evening. I learnt my lesson about bringing a few sets of clothes etc downstairs with me before I went out so I didn't have to keep traipsing up the stairs earlier in the week. I have been content too, to do this little, which is an achievement. However yesterday everything ached or burnt with pain (not sunburn, luckily) to the point where it turns your stomach and you start breathing like you're in labour. I managed to get outside around 3pm but soon experienced the most strange of symptoms I could feel the heat of the sun on my skin but I had the shivers and goosebumps. It was sheer madness and definitely something very strange. Even at 2am when it was still around 17 degrees I could stand to have a hot water bottle to soothe my aches and pains.

It really did annoy me a bit. Not so much the new symptoms, or even sleeping till 2pm but the fact that I ached like I had been hit by a bus when I had done so little. I know it happenns, I have blogged about it happenning but I had been being good. I had consciously been doing less and relaxing and not multitasking and was coping. I had even got a bit more of a routine going. But then to still be hit by screming pain to the point of not being able to brush my teeth by myself and having to get my Mum to cut up my dinner for me was a bitter pill to swallow. I felt like screaming "honestly, what more can I do?" But that is the nature of the beast, sometimes it doesn't matter how good you are at the end of the day you still have a chronic illness and as Miseandino said you can never forget about it. It is very easy to have good days and sing Hallelujia from the roof tops but push too far and you're back to suffering but this time as I say I thought I had been being good. Perhaps it is a delayed reaction to to last weekend or last Tuesdays few hours in Chester. All I know is that it has really bit me in the bum. You would think that each flare or bad day gets easier to deal with as time with the condition progresses but actually it still feels as fresh as ever. It is not opening up a new wound but making a whole new cut. Yes your knowledge can improve of how to cope with it and with the condition as a whole but each grasp of pain or new symptom is consuming and frustrating. Especially when like I say you thought you had been being good.

Thing's I learnt in clinic: Physiology

Just look at how much technology has advanced in the past thirty years, well even longer but it has certainly progressed rapidly in the past few decades. How many times have you bought a new phone only for a newer one to come out the following week? Technology has become an integral part of our lives. We have countless methods of communcating with each other, mobiles, email, text, Facebook, Twitter, Whatsapp and Snapchat to name but a few. Gone are the days where you would spend an embarrasing 5 minutes talking to your friends parents on the phone before they handed you over to them and then you had to talk really quietly so that your own parents didn't hear what you were saying, whilst seeing how far you could stretch the cable.  What a dating nightmare! Then if someone rang you during your favourite tv program there was the option of being rude or face missing it. Thank goodness for the invention of sky plus. Although it has made it difficult for me to sit through a film at the cinema and not be able to pause the film whilst I go get a cup of tea, not that I am making my own cups of tea at the moment but you catch my drift. Plus I wouldn't have a cup of tea at the cinema because that just seems strange. Can you even get tea at the cinema?

Everywhere we look we are surrounded by technology from the sat navs in our cars to pioneering surgury, skype to faster travel and it is all claiming to make our lives easier, to bring people closer and to have a world of knowledge at our finger tips in a matter of seconds. Certainly I would not do without my phone right now, especially the amount of times I have to text my Mum to get more painkillers or something else when my legs and back cry out in pain and I have no way of getting out of bed. Okay I know what you're thinking- just have them by my bed, but I do and then I need more and my brain is so useless at the minute that I often forget what tablets I've had, so they need to be monitored. As naughty as it is the internet is also helping me through the painful nights and bringing you this blog. Our lives are constantly on the go these days and technology encourages us to do several things at once but in all this fast moving develoment and constant change it is easy to forget that as human beings we have not evolved all that much.

So let's travel back in time to visit our Paleolythic ancestors. Now I have just tried to do some research on this (again thanks to the wonders of technology and Google) but so far it is a bit obsessed with the new paleo diets, which does sort of tie in with what I want to say but actually just shows the world's love affair with fad diets. However whilst we're on the subject of food, spare a thought for our ancestors who couldn't just go to the kitchen and open the fridge to get their dinner, or pop to the local supermarket. They had to hunt and scavenge, often for long periods of time and then they would need to kill and prepare their finds. Food didn't just come to them or if it did there's a good chance that they themselves would be dinner. These labour intensive trips to find sustenance were the cavmen's prime source of exertion: other than pro-creating and avoiding being eaten of course. This sense of danger meant that sustenance was all the more important as well as rest and not exerting themselves besides hunting. This was so that if danger did come along they could try to flee, triggering that natural fight or flight instinct that has in essence kept the human race alive.

Coming back to the present and although our technologies, landscapes and lifestyles have changed dramatically our physiology has not. Deep down we are still programmed to rest (not sleep, I will get onto that in my next post in this series) for long periods of time and conserve our energy and of course we still have that fight or flight mechanism. Only now we are less likely to be eaten by a wooly mamouth. However the busier we become the more we are tuned into the fight instinct. This could be applied to something basic such as fighting tiredness to watch your favourite show. No one wants to hear about it on Facebook or Twitter do they? And they can be difficult to avoid. Perhaps there should be warnings like on the football scores. "If you don't want to know the score then look away now." Or you could be fighting something much larger like grief or illness and are doing everything in your power to carry on as 'normal.'

Can you see how this connects to having M.E? The more we fight those natural instincts and rest less the more out of tune our bodies become. Until for some of us we develop life altering conditions. Our levels of cortisol, which we need for adrenalin lower, causing our bodies to panic as we don't have those natural reserves that we would need if a wooly mamouth did stop by. Of course we probably would naturally think 'run' but how far we would get is another question.

This brings me onto post exertional malaise, which is a posh medical term for describing feeling tired after doing something and perhaps feeling unwell or in pain too. As much as M.E is about feeling constantly fatigued and unrefreshed it is also about being in a state of post exertional malaise. What is worse is that we don't just feel like this after a long day at work, great night out or a gym session. Because most of us can not even imagine doing those things. Just the simplest of tasks like washing, getting dressed or preparing meals leaves us in a state of post exertional malaise that could last for hours, a day, days or sometimes weeks. At our very worst just the slightest movement will induce this state. Meaning we need help to go to the bathroom, bathe and be fed. These very simple tasks leave us feeling like we have done a full days work or completed a marathon. It can be particularly difficult and admittedly annoying when someone says to you "Oh yes, I feel like that today." Someone without a chronic illness that is. Because at least their tiredness is waranted. They can not relate to just feeling like sleeping for a whole week after simply managing to get to the bathroom. The closest analogy that I have heard that describes to others what this is like is to imagine that they are running a marathon with the flu.

So our lifestyles are forever moving faster and our expectations grow the further we move from our natural physiology. Of course our ancestors never had to worry about paying bills for their neccessities such as food, a roof over their heads or clothes, which for many of us has become the root cause of our exertion. We have to work to earn enough to live. Nor did they live it up as the Volvic adverts suggest or go bowling like Fred and Barney. Although of course this is all good, we need to enjoy life and counteract the hard work. However the more we do so the more we exert ourselves even more. However as a species we aren't equipped to function well like this. Many people are but again are they simply looking after themselves better?

Of course though we live in a different age and I for one would rather live now than back then. It sounds rather terrifying and boring. Expectations now are at an all time high and to balance this people are looking more and more to leisure activities and their social lives but this too can take it's toll. Leisure certainly doesn't have the same meaning anymore. By living in this era though and having M.E there are more ways to help, like skype to see your family and friends, online shopping, whileing away the time watching tele, researching, writing this blog and let's not forget that wooly mamouths are extinct, which is good as my wheelchair doesn't go all that fast.