Invisible illness week

 

Unfortunately I've not been able to prepare a dedicated post to mark invisible illness awareness week, which  was this week 8th-14th September. I've been trying my best to finish other posts that I'd been working on for weeks and feeling really rough, with 3 days of being bed bound. However what I can do is to use this week as a jumpstart. 

 

For a while now I have been thinking about the reasons I started this blog, one of which was to raise more awareness and to let more people know about an illness that they'd perhaps never heard of before. Mainly because there is not a lot of help out there and a true life account is the most honest way to share what it's really like to be chronically ill. Being told that you have a condition that you have never even heard of is frightening. You would think that an illness that can be so disabling would be more common knowledge but sadly there is a lot of misconceptions and untruths in what little understanding there is. So I wanted to share the truth and perhaps create a little corner of the internet that could help other sufferers, new sufferers and friends and family of sufferers to help nurture understanding.

 

 

With this in mind I have been wanting to branch out a bit (there will be a lot of branching going on hopefully in posts to come) by featuring lots of other chronic illnesses that a lot of people have never heard about. What I want to do is to educate myself and others about more invisible illnesses and share them on my blog. To try and raise more awareness.

 

I already have a few in mind. Some of which I have experience of and I will be doing more mental health posts. However, I would like your input. Do any of you suffer from a chronic illness other than M.E or Fibromyalgia? Would you be willing to share a little of your story and information to help educate others? Even links to charities, organizations, blog posts and articles you have found helpful would be much appreciated. You will be credited of course unless you want to remain annonymous. Your help will be gratefully received. Please contact me in the comments or through gmail. If we can raise more awareness and educate people then all the better.

 

 

Lastly I created the photo at the top of this page after seeing a similar post that my friend Olivia did. These photos were taken on the same night. Now looking at the photo on the left if people didn't know better they would assume I was healthy but the truth was I was only out of my chair for 2 minutes to take the photo. Even the photograph in the wheelchair does not portray the whole picture. It says I have a disability but does not portray the days of being bed bound, needing care every day and the lack of independence. In both photos I'm the same level of ill but who would guess? The point is we never know the full story and therefore shouldn't judge. Many of us are fighting silent battles behind closed doors. But when we do go out we crave that little bit of normality that we don't get to experience often.

 

 

I have wrote other posts on invisible illness and M.E before so please do have a read of them too.



 invisible illness week 2013

Am I Invisible

 

In my 2013 post I say that the best way to educate and spread awareness that is truthful is to read the blog posts of sufferers. Below are links to some of the blogs I read regularly, all written by some very lovely people that are doing a sterling job at raising awareness through their bravery. As you can see there's a fair few. All ladies though, I need to discover some male bloggers. Come on fella's.

 

All About ME by Alison

Meg Says by Meg

ME, Myself and I by Anna

The Chronic Ills of Charlotte by Charotte

A Life Within An Illness by Clare

Life, Love and M.E by Hayley

Nonsense from my 'home office' sofa by Sophie

M.E and Me by Chloe

The Pillow Fort

Emma's Looking Glass by Emma

Freckles and All by Faye

Katherine and ME by Katherine

Chronic Fatigue & ME by Louise

Let's Pretend I'm Interesting by Poppy

Smell the Roses by Rachel

Spoonie Sophia by Sophia

Around and Upside Down by Vicky

www.chelseyjay.co.uk by Chelsey

Smoothie Spoonie by Lennae

 

Sian

What an M.E crash is like

Lately I have been doing it tough health wise. Or should I say tougher than usual. So I thought it would be a good time to write about crashes and flares. Although due to the flare it's taken me a good while to write.

You may have heard many sufferers talk about having a crash. Now to most people, myself included, that conjures images of them having been involved in a road traffic accident. But what is actually meant by the term is a sometimes literal crash to the ground of their health, energy, concentration. It can often signal the onset of M.E if you are previously undiagnosed and can be known as a trauma. This is what happened in my case, which you can read more about here. Other traumas include infections, accidents and bereavement. Something that will stop you in your tracks and knock you off course.

Once you have M.E, crashes can happen frequently. They can be triggered by an overload of activity or what our brains perceive as such. Many of us aren't physically overloading ourselves (by which I mean often next to nothing and the most active thing being going downstairs) however there seems to be a fault in our nervous systems that tell our bodies there's too much going on and they need to shut down in order to cope. As well as chemical changes such as adrenalin levels. Crashes can also occur from an overload of emotion or too much activity going on around you. For me personally my biggest trigger is loud music, in particular really bassy music. You know the stuff with the really thumpy bass. It makes my whole body reverberate and feel like I'm being thumped, and torn apart, which causes agonising muscle pain and the feeling I'm going to pass out and a crash can come on in a matter of minutes.

Often there are warning signs but they never really prepare you for them. Because when your body decides to crash, that's it going into hibernation. Much like a computer that's been on all day with lots of tabs and programmes open. Chronic illness and M.E in particular is a constant series on peaks and troughs that can vary a lot. A crash is when you find yourself at the bottom of one of those troughs. 

Now let me just point out I'm not talking about organs shutting off or failing, and in need of a crash team and defibrillator it's not that dire. What I'm referring to is a power cut of sorts and while it's not critical it can be dangerous, especially when it comes to when and where it happens and it's often very frightening.

A sudden crash can come on without much warning. It may also lead to a flare, where you will experience high levels of symptoms for days or even weeks. Or worse still a relapse, where you struggle to improve for a prolonged period of time. So what happens? For me, I can experience anxiety type symptoms as though I'm about to have a panic attack. My body becomes tense and I can be feeling somehow overwhelmed, like something bad is about to happen. This is the fight or flight mechanism kicking in. When our bodies and brains perceive they're under threat this kicks in to help us get away from any danger. You can often be mistaken for being drunk, because you become very unsteady and start to slur your words. Often drifting in and out of consciousness. My eyes struggle to focus and blinking becomes rapid. Then I start to feel very heavy like I'm being pulled down. And the brain starts to shut off. You close in on yourself. Almost like when you are having an anaesthetic and the anaesthetist asks you to count down. It's not as controlled as falling asleep nor is it the same as being asleep as you still have some perception of what is going on around you. Hearing etc. In fact sleeping at that time can be difficult because of the adrenalin in your body. It is more a matter of different states of consciousness. However, you can literally feel yourself shutting down. It's very scary.

 Your eyes can either be open or closed. However, it's like the lights are on but no ones home. Usually they'll be closed but you may be able to open them up after a while, all depending. As I said my first crash I couldn't open them for 3 days. If your eyes are open then everything is blurry. Regardless whether your eyes are open or shut being able to communicate is difficult. Your ability to speak is lost and it can take a lot of effort to mouth or whisper words. 

Now you'd think that at times like this some of your other systems would shut down. Like your bladder and your thirst. Which as you can imagine when you're feeling completely shut down and unable to communicate well is hard. With your bladder it's again because of the fight or flight instinct, your body wants to lighten itself in case you need to flee. Gee thanks  primeval get me away from woolly mammoth instinct. 

Luckily the other day as I felt myself starting to crash I had made sure I had my phone literally at hand and put it so that when the screen was unlocked it was on my messages. It did take a while to get to that stage to be able to unlock my phone however. And I was only able to press a random letter and send. The problem was that my family thought that I was actually fast asleep. So although they were getting messages they thought I was leaning on my phone. So other people knowing the difference can be a big issue. 

Thankfully they soon realised I needed help. I could only mouth what I wanted. Luckily I have a commode, so as I was downstairs and very weak it was very handy. Of course I needed a lot of help just to sit up and up on to it. I was extremely weak and floppy. Another issue is of course you can be desperate for a wee but don't have the muscle capacity to do it. That's how you know you're weak.

Below I've listed some things that you and your 'carers' can do to help and keep you safe.

Things you can do:

Try not to panic. This will drain you even quicker. Take deep breaths and reassure yourself.

As soon as you start to feel a crash coming on. Get yourself to safety and comfort. Lie down on your bed or a sofa 

Avoid walking too far incase you fall and avoid the stairs. Try to avoid lying on the floor if you can. One because it's cold and uncomfortable and two because it's going to be hard enough to get up as it is.

Have your phone close by. As close to hand as possible. And like I said above ifyou have it set up on phone or messages. 

Maybe set up a sign system with your 'carers' so you can effectively communicate what you want. Or cards with yes and no on them. Obviously develop this on a good day

Also make sure your 'carer' knows your triggers 

If you are out and about, particularly if you are on your own, carry a medical identification card. You could make one yourself, providing information of your condition and what others can do if they find you. Providing contact numbers can also be useful

Stay put for as long as you need too. Do not get up or move until you feel strong enough and only do so with help

The next day spend it resting and doing as little as possible and for as long as it takes for you to regain your strength. Remember this could take weeks, and your post exertional malaise will be even more significant. You may also find that you sleep more

If your relapse is prolonged or more severe seek medical help

Make use of youtube, iplayer, Netflix etc if you can tolerate it, as it's a way to keep occupied but not having to hold up a book etc, which can be painful

Things others can do for you:

Put communication devise by them, if they don't already have it

Stay close

Know the likely triggers of their crash and do what you can to stop it. Example, loud music- put ear defenders on them (if they can tolerate it) or relaxing meditation music can help cancel it out. Try and get whoever is playing the music to turn it down or off

Try to eliminate as much activity as you can around them. Switch off the telly etc

Make sure they're warm or cool them down if they are overheating, a wet wipe or face wipe is useful. Note that temeratures can change quickly too so keep checking

If you do need to lift make sure you lift correctly, bend your knees and try not to hurt yourself

Ask questions, do they need anything? But be specific so that they can nod their heads rather than saying. for example; Do you want a drink? Do you want any painkillers?

If you're giving them a drink use straws 

Sometimes a crash can be due to low blood sugar so get them a sugary drink to help raise it again

For the next few days you will need to be on hand more. You may need to help getting them up, feedin, managing their medication. Especially things that take much concentration. 

Try to make sure that they do not over exert themselves and are resting properly

If a relapse lasts longer than usual or is more severe seek medical help

I have also found this online paper here that can help others understand what is going on in these instances. What signs to look out for and how they can help you. It is well worth the read. Apologies it's been a long one folks but hopefully it's been useful.

Sian x

Severe M.E awareness day

http://www.mookpixie-infofreak.blogspot.co.uk/2014/08/black-dress-selfie.html?m=1

http://lifeintheslowlanewithme.blogspot.co.uk/2014/08/severe-me-awareness-day.html?m=1

"M.E that's that thing where you get tired isn't it?"

No, no it isn't. M.E is an illness. A neurological illness that has been recognised by the World Health Organization since the 1960's. Yet so many people have never even heard of it. Or if they have it is often false statements like the one above. 

I myself suffer from severe M.E. I have very little independance and am housebound about 90% of the time. Ok I might be writing this post from abroad but I'm writing it from a bed abroad and we come here to try and let the sun do some healing. And although my life has changed beyond recognition I know things could be much worse than they are. 

 

Severe M.E at it's very worst can only really be described as a living hell. Unable to move, almost comatose, not being able to recognize your closest family, being so senisitive to light and sound they cause physical pain, tube fed and catheterized. Being so desperate for release from the constant exhaustion and pain but being told there is no cure, no effective enough treatments only tablets that target pain in different ways. Expected just to accept that that is it and to deal with it.

Now imagine being that ill and the police turning up at your home and forcibly removing you from your sick bed and confining you to a mental health ward. As was the case with Karina Hansen. Read my post on her on the following url (apologies I can't do direct link at the moment)

http://howtodealwithme.blogspot.gr/2014/02/justice-for-karina-hansen.html?m=1

This case highlights just how much more awareness there needs to be of this illness. Recently things are changing somewhat. Most recently there is the story of Jessica Taylor a 23 year old girl with severe M.E who has been ill since the age of 14. Confined to a hospital for years in order to be tube fed. As a result she developed osteoperosis and was at risk of braking a bone if she moved. There has been some hope though for her as finally she has been able to withstand hydrotherapy sessions and developed her muscles enough to be able to lift herself up to sit in bed, to stand with assistance and to walk a couple of steps. You can watch the news article on BBC South East on following the link

https://m.facebook.com/BBCSouthEastToday

It is a positive news story for the awareness of severe M.E as it shows photos of Jess pre M.E contrasted with photos taken whilst she was at her worst. The main highlight of the piece is the fact that it has taken 9 years for her to be able to do these very very basic things again. How often do you sit up in bed and then walk to wherever? You probably don't even give those steps much thought. Now imagine not being able to do that for 9 years. It's pretty well unimagineable. Can you imagine even saying my biggest achievement this year was to walk a couple of steps?

However what is important to remember is that Jess is far from better. She is not cured.There is no cure for M.E. Just because she has taken those few steps doesn't mean that she can now walk everywhere. Taking those steps has caused post exertion malaise and it will take her time to recover before she can try again. She is still having seizures and at times is physically sick. However she is over the moon to be experiencing these 'firsts'. 

One of Jess' biggest achievements though is setting up the charity "share a star" which sends a star and other gifts to seriously ill children and teenagers. Having been in that position she knows the importance of having something to hold on to. You can learn more about the charity on the following link.

Lastly I want to share an awareness campaign that started over on Facebook by Janet Smart. The black dress selfie for Severe M.E Day is representative of those many sufferers suffering alone in the dark. It also represents a mark of respect for Sophia Mirza who died of M.E  after being exposed to mistreatment, that left her even worse. Today (August 8th) would have been her 41st birthday and hence why this date was chosen as an awareness date. The day before her death Sophia's mother promised that her life would be a lesson to others and swore to raise more awareness of severe M.E. Learn more about Sophia and her story on their website.

www.sophiaandme.org.uk

You can read some more about the black dress selfie on Sally's blog at 

http://sallyjustme.blogspot.co.uk/2014/08/blackdress.html?m=1

Details of how you can join in and help us raise awareness are on the following poster. Or simply share or retweet the poster. Or other awareness tweets or posts you see. If you care to share Sally's blog post or my own then please do.

My post is also dedicated to my dear friend Irene who passed away in February after 38 years of suffering with severe M.E. Missing her lots today.

I've included some more blog posts at the start of this posts by Anna and Chatlotte other severe M.E sufferers. Again my apologies for not being able to do direct links. 

Sian

Monday Morning

photo source: Pinterest

  

Erm, I would love to! Seriously.

A lot of people tonight will utter one or more of the following phrases:

"Where did the weekend go?"

"Why do Mondays come around so fast?"

"Back to reality tomorrow"

Followed of course by one of the following statements when they get up the following morning:

"I hate Mondays"

"Monday is the worst day of the week"

Etc, etc, etc you know the kind. Just scroll through your timelines on Facebook or Twitter to see more.

But to all of you lamenting that the weekend is over; that you have to go back to work; facing another 5 days of early starts and commutes. That you had a fantastic weekend spending time with family and friends and now it's back to reality. Or lamenting that once again you didn't win the lottery and no longer need to work as you will be in a different country every week. To all of you, I say I would gladly swap with you. 

I would happily wake up early, even on the cold winter mornings when the car needs to be de-iced and go to work. Then spend 8 hours sat at a desk, staring at a computer screen. Staring out of the window on hot days wishing I was really sat in a beer garden. The office bitching, the person that has stolen your dairylea triangle that you wanted for your lunch. There being no spoons in the office kitchen for you to stir your tea so you end up using a fork or a pen. I would very happily be looking forward to facing that tomorrow. 

 

photo source: Pinterest

And one day I hope I might make that a reality. Maybe not necessarily working in an office but out there working. Earning my own money. Money that could give me back some independence. To drive again too, will just be fantastic. To go where I want, when I want. To pull up at work and say "come on then what is today going to bring?" and leave thinking "I achieved something today." I am tired because I have done a days work. Importantly I think a big factor will be just being more social everyday. To be around people of a similar age. To enjoy work banter. To enjoy company. 

Bring it all on. Yes, I absolutely wish I was going to work tomorrow. I envy all of you that are. I know that I perhaps will not work in stage management again, but you never know. I do know that I will enjoy work, of course moan on occasion, but I won't work myself into the ground either. It will be 'work to live', which is a complete flip around from my previous beliefs. But in all honesty I would absolutely love to just have that normality and I would be extremely grateful for it. I would love to not feel completely knackered just waking up and having breakfast. That that morning routine just becomes a process that actually doesn't require much thought and then off out the door I go. And the tired I feel when I got home afterwards was a 'good' tired; a 'you've done a full days work' tired. To wear proper clothes everyday and not just stare at them, hanging in your wardrobe only coming out on special occasions.

 

Why? Because right now, things are far from normal. Weekdays and weekends don't even have a difference, because each day is another day of fighting. Of suffering. Of getting little respite from your symptoms. Of asking for help over and over each day. From help me sit up to can you feed me. Being so helpless some days. So very far from the career I was forging and helping others more than myself. And it all changed so very quickly. Life can change in an instance. 

 

So I dream of all the things most people are tonight moaning about. I want what you have. So you may not think you are lucky and that things are unfair but you are the envy of so many. You can earn your own living and not have to spend most of it on medication. You have freedom. You have company and social interaction, that's away from a phone or computer screen. You can make plans for the weekend and know that you can keep and enjoy them. Most of all you have your health. Health honestly is wealth. So many take it for granted. I know I did. But never again. Good health will take you places. So treat yourselves well and be grateful that you have it. Good health is something that is often under rated, something you don't really fully appreciate it until you fall ill. And no one thinks that will happen to them.

I don't mean to sound maudlin here, nor am I saying you should live your life constantly looking over your shoulder. I simply mean, enjoy life, make the most of having good health and if you want to and are able to make changes then do so for the good of your happiness. But also appreciate that all the things that you consider normal, even the dreaded Monday morning alarm are things that many others would love to be their normal. Instead of day upon day of emptiness at the mercy of your symptoms. We're not lucky to be at home or in bed everyday, you may think we are, but it soon wears thin. I wish I could swap with you, I really do. But on the other hand I wouldn't wish this on anyone.

So tonight as you go to bed try and think of the positives rather than the doom and gloom thoughts about the dreaded Monday morning and maybe think twice about those statuses.

Sian





 

 

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.

Mind your P's and D's

This is something that I was taught at chronic fatigue clinic and I feel is the most valuable piece of information that I learnt there. It's something that I can use every day, no matter the type of day I'm having. It's all about how you organise yourself and of course those ever useful spoons. I thought that it would be good to post this now, in the run up to Christmas and also to help back up my posts on travelling, which I hope to continue in the new year. And just to make it clear the p's have nothing to do with waterworks. That is another story- naughty amitriptyline.

So the first P stands for Planning. As many spoonies know it takes a lot of planning and preperation in order to do a lot of things. It often feels like a military operation. Not just in getting out of the house but planning how best to use your spoons on a daily basis. So with that in mind it is always best to plan on the day, when you know roughly how many spoons you have, what your symptims are and what you're capable of. The day before might have been a good day and may fill your head with plans for the next day but chances are you may not be feeling the same as the previous day. Therefore you may not be able to manage what you had planned, which can lead to frustration and disappointment. Of course some things do need to be planned in advance, special ocassions or holidays, even doctors or dentist appointments, where you can in some respects try and reserve some energy. And you need to be as prepared as possible for those events. But think how often we have to change plans on the day or last minute because of our health. Hopefully people will understand in those situations and there's always hope that you'll make it next time. Of course the plan should also be flexible enough for any fluctuation in your symptoms throughout the day. I sometimes like to make a tick list as it's something that I used to do at work. It feels rewarding to tick things off and feel a sense of achievement.

Once you have a rough plan, it's time to utilise the next P, which stands for prioritise. Putting the tasks on your list into order of importance. And this is where the D's come in. First ask your self; Does it need doing? Okay it might be on your to do list but how realistic were you being with that list? Again, here think about the best way to use the energy that you have and also consider the reasoning behind doing something. Is this connected to your own or other people expectations? Take a look at my post on expectations. If people are coming to the house do you absolutely need to hoover the whole house? Or is that something that has been impressed upon you? Chances are unless the house is an actual wreck then they wouldn't notice, unless you pointed it out. They've come to see you not your carpet. So if something doesn't need doing or doesn't need doing specifically on that day then ditch it!

The next thing to ask yourself is does it need doing by me? To use a Christmas example; you may have presents to wrap but is there someone that could help you with this? Provided the present isn't theres of course. Wrapping presents is consuming. You can always go the gift bag route though as I have this year. My arms are too weak for scissors. Again expectations can come into play here, often in the form of standards. Believing no one can do as good a job as you could, or they wouldn't do it how you would. And if they did then they'd only do it wrong and you'd have to do it the right way after they've botched it up. Decide what you can delegate, to help save your spoons. This might be useful for bigger tasks such as going food shopping. Can you ask someone to do this for you? It's difficult if you live on your own of course, but perhaps a neighbour or friend could help with some tasks. Putting the bins out on recycling day, walking your dog or mowing the lawn for you. I think my Dad will say that I have become a master in delegating. Or that "Daaaaaaad?!" is one of the D's. But I'm very lucky to have help and the majority of the time I genuinely couldn't do what I've asked for myself. Such as cook, or make a hot drink.

Now that you know the tasks that you can do, ask yourself Does it need doing now? For example taking a shower, do you have to have it at that point of the day or can you wait?  And then the last D is for Do it! Not that it is ever that easy sometimes. Depending of course, on the activity. Watching television or reading might be easier than say emptying the dishwasher, depending on whether you are having more mental or physical symptoms.

Some tasks will also require the use of another P, which is a secondary form of planning. It's about making sure that you have the necessary 'tools' at your disposal to undertake the task. Imagine a window cleaner, after putting up the ladder they do not go up the ladder and then come back down to get a sponge, they take the sponge with them to avoid any more unneccesary excertion. So if you plan on cooking make things a little easier for yourself by having all your ingredients and utensils together. You can always take a break between getting things together and starting, obviously where food hygiene allows. Or even for something smaller like watching the tv, make sure you have the remote handy and any drinks or snacks you may want.

Finally the last P stands for pace,using pacing mindfully whilst doing some tasks can help. Do them at a leisurely pace and take breaks if needed. Try not to multitask as well, do one thing at a time. I am terrible for watching television and being on the internet, which means I'm using up more spoons and concentration.This is where you need to listen to your body carefully and learn to stop before you become overwhelmed with fatigue. Remember that tiredness is a warning signal. So it is important to learn how much you can do before you begin to feel tired. By doing this you are also gaining some control over probably the most important P of all ( yes I know I said finally for pace but that was for the planning process) post exertional malaise.

Perhaps I have explained it before, but post exertional malaise is the state that M.E sufferers experience after doing an activity. Sometimes it occurs straight away, other times it can strike a day or a couple of days afterwards. It's true what they say about how you suffer more the second day after a more active task. How long you will experience post exertional malaise can also vary. It may be just a day or it could be months. I am certainly still suffering from going on holiday in October. But it doesn't just occur after big events it can happen after simple activities too, like taking a shower.  Post exertional malaise really sets M.E apart from other illnesses as we lack the ability to recover quickly. We often call it payback. So any ways in which we can reduce the stress of an activity i.e by pacing it can help us not suffer as much payback. It's good to find a baseline of how much activity that you can withstand without going into post exertional malaise. I have a post called things I learnt at clinic; diaries which explains one way of helping you establish a baseline. Remember though that your baseline can change if you experience a flare up or perhaps another illness. I haven't done a diary since relapsing in May because most of my time I need to rest and I'm getting better at reading the signals to stop before I become overwhelmed. But hopefully in the new year I will start establishing my baseline again.

I hope this post has been useful and that you can put it into practise. Perhaps to help you through the holidays and also on a daily basis.

This will probably be my last post now before Christmas ( as I need to rest) so I wish you all the best and I hope you can enjoy it as much as you possibly can. Take it easy.

P.S my blog now has a Facebook page. I've set it up to share smaller things that I can't post on here. There will be lots of inspirational quotes, things to make you smile and laugh and also some crafty things to help keep yourself or any little ones entertained. I already have a Christmas craft album. So come join in at www.facebook.com/memyselfandmeblogpage

It's beginning to look a lot like Christmas

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

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

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

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

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

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

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

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

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

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

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

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

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

o

Travel insurance

First rule always take out travel insurance. The chances are that nothing will happen that will make you need to claim on it but you know what they say it's better to be safe than sorry. As chronic illness sufferers too we are in a more likely category that something could go wrong. For example you may be too sick to travel and need to cancel. On a basic level a good policy will also cover you for any loss of luggage or cash. Or in the event of a delay cover the cost of food or extra accommodation. It's always good to have that reassurance. So here is my tips relating to travel insurance:

* Look around for a good deal on your travel insurance. If you have access to the internet then use an insurance comparison site. Here is one that compares policies for pre-existing conditions

* Make sure that you choose a comprehensive policy that covers a range of things and has a larger medical allowances quote. These may not be the cheapest but ultimately will offer you more benefits should something happen. If you can find a policy with low excesses too then all the better.

* Note that some companies require you to telephone for a quote if you are aged over 65

* As you have a chronic condition it is advised that you take out the policy over the phone, to the medical screening helpline of your chosen company. Although some will let you do so over the internet, some from the link above for example. If  you already have a travel insurance policy, either through your bank account or a yearly subscription you will need to inform them of your condition via the phone for most companies. Because you are declaring a condition they will run you through a series of questions with yes or no answers to determine whether you can till be covered by their policy. If you want to download  copy of the possible questions, these are from the post office insurance, visit the link here
The main causes that would mean that you wouldn't be covered or would need to pay extra for your travel insurance are related to heart conditions, cancer and terminal illnesses. Or whether you are travelling against medical advise.

* Check the wording of the policy that you take out or ask the advisor on the helpline to read it out for you. Ideally you want a policy with a good amount of medical expenses and to ensure that should you not be able fly (or whatever transport you used) home that you are covered for someone to stay with you. Meaning they can claim back any additional accommodation costs or flight change costs. Some policies will also cover the cost of someone coming over to be with you in the event of an accident or illness. I think that this is important to have on your policy if you have a chronic illness, because of our obvious need for the additional support.

* It is always best to inform your insurance company of any existing medical conditions as it's always best to err on the side of caution, even if you are not likely to need to go into hospital. Let's face it hospital is the last place you want to be with ME and it's not as if they can do anything about it. However should you need to make a claim it is very easy for insurance companies to turn down that claim if they find out about a pre-existing condition. Doctors records for example or hospital appointments. I have heard of people being turned down as they have had an outpatients appointment. So it's best to be safe and most of the time it's at no extra cost.

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.