Am I invisible?

Photo source, pinterest

As the blog is now a year old I want to reflect on some of the reasons why I started this blog and what I've gained from it in the past year. I started this blog at a time when my illness was becoming more severe. A time when I was very scared to be honest. I didn't really know where to turn. Yes, my doctor could send me for more blood tests and try and rule out anything else. Check for signs of muscle wastage etc. Anything 'more serious' as they like to term it. Well to me it was serious. I was loosing more and more strength in my legs and the length that I could walk for was decreasing rapidly. I was needing to use the surgeries wheelchair to get into the doctors. Of course I already knew I was sick and had my life turned upside down because of it. Unable to work, only being able to do things on good days and then paying for it in increased fatigue for days if not weeks after. However I was now facing losing even more. My legs were literally being taken from under me.

When I was first diagnosed I knew of a local support group and had attempted to join in some of their gathering but was simply unable too. It seems somewhat redundant to have a support group when the very illness that the support group is for stops you from attending. I'd also attended M.E clinic but since being discharged it felt as though I was left out in the wilderness and as I explained in my year in review post I had gained no insight there that the illness could do this. The world felt like a lonely and scary place. 

Around this time I was reading a book by Ali Harris called 'The First Last Kiss' in which a young woman starts a blog to help her to deal with her life being turned upside down. I won't give away details, you know I hate a blurb, and also because I don't want to spoil it if you haven't read it, which I recommend that you do. Before hand I knew a little about blogging and it was something that I would have attempted as part of my journal work for my masters degree but I had associated it with people that had stories to tell, tales from their busy and exciting lives. Neither of which I had at that point. So what would I even write about? Who would want to read about how I spent 18 hours asleep had some painkillers then went back to sleep. But after reading this book it made me think that maybe I did have a story to tell. In the trailer for the Canary in a Coalmine project there is a woman filming herself shaking uncontrollably due to building noise and she says to the camera "I think someone needs to see this". And that resonated with me so much in deciding to write this blog. Much like in the book I wanted to share the nitty gritty details, the things no doctor could tell you. The things people could do with knowing in a way. It felt like the only way that people would know the truth about the illness.

On top of this, I had always found writing to be a good form of therapy. To get my feelings down on paper and out of my system as it were. I'd always found this cathartic. So if no one else read the blog then  it didn't matter as it was just as important for me. To help me cope with the changes that were hapenning in a positive and constructive way.

So as my illness became more visible to the public on the ocassions I could leave the house and more sick person paraphaneilia started to appear around me the more visible I decided to make the profile of this illness. I said from the beginning that if I could educate just one person about M.E then I would feel humbled. In the past year of writing this blog I'd like to believe I have educated a few more. It's always great to get a comment from someone saying that they had never even heard of it and now thanks to me sharing my experiences they do. If more people could recognise an M.E sufferer if they saw one then that would be great for awareness. I don't think someone who see's me in my chair automatically thinks "oh, there's someone that suffers from M.E." More than likely they would look at how old I appear to be and think "I wonder what she did." When I can get out, sometimes I like to dress up a bit more or put on more make up than I used to which I think further adds to the public's confusion. There's no obvious plaster cast or pregnancy bump or a headscarf covering up a bald head to give them a clue as to why I'm in a wheelchair. If someone saw a photo of you with a feeding tube (not that I have one but I know sufferers that have) they would probably think it was due to a digestive disorder. Not that you physically do not have the energy to chew. If someone saw someone with sunglasses on, on an overcast day they would probably think that you're wierd or trying to channel a celeb,not that even the minimal daylight is too bright for you to process and trigger migraines. More on the publics perceptions soon (well hopefully soon.)

Most would probably say they'd never even have heard of M.E. Or at least not known the full effects of it. I had only ever known it was a medical condition but no details about it.

And so I decided to step out of the invisibility cloak. To reach out and find other sufferers that were also in hiding. At first I didn't know just how much of an online community there was. I had read a few blogs but they seemed to peter out once they'd recoveted somewhat. As I began to share my blog the more I discovered that there were many more sufferers in exactly the same situations. Plenty more people brave enough to share their stories. And so the world became smaller again, less lonely. If I wanted to talk about my illness all I had to do was go online and there were people who understood. If I felt cut off from the world then I could find friendship online. That has been one of the greatest gifts from blogging. In a way it's given me a social life again but one that I can manage. One where I can just be completely myself and not doctor my illness so that it is more publically acceptable. Of course I'm not saying that   having 'normal' friendships and social interactions should be replaced by this. They are still very important. But it is nice to have a shared understanding that no one else can. 

So am I really suffering from an invisible illness now? I'm talking about it more now to help raise awareness and of course with the wheelchair etc people know something is wrong. But like I said unless they knew me well they'd probably never think it was M.E. The only way I'd say that my illness is currently invisible is due to the more bedbound and housebound times. No one sees the really bad days apart from my family who I rely on as my carers. And recently that changed a little when I decided to post a photo and a description of my symptoms the day after M.E awareness day when I suffered from really bad Post exertion malaise. I know some people will have just ignored it, just scrolled through to a more intetesting status. I know some people will think that I was attention seeking or wanting sympathy. But there were others that took time to read it. People that I thought may comment or be in contact didn't but on the other hand some I never expected left lovely comments. I wasn't asking for sympathy or attention it was my way of fighting. Those that know me well know that I'm pretty determined and although my cause has changed and I have limited energy to use I'm still determined. Those photos and all my statuses or tweets about M.E are my way of saying "oi listen and take notice of this illness!" My way of doing what I can to help our cause. Like I said earlier as long as I'm helping to raise awareness too then I'm very grateful.

This is a topic that I could write so much about and I will write more on other  posts. It's long overdue that this illness was made more visible. It's by making this illness more visible in what little ways we can that will get this illness noticed. It's not until this illness is noticed that we may be taken seriously. The government may give us more funding and funding to find a treatment that will be effective not just for more psychological treatments that make no inroads what so ever. To make sure that clinical services are offering equal programmes across the country not a postcode lottery depending on what healthcare professionals are interested in M.E in your area. Making this illness visible is our biggest fight at the moment and one all us bloggers and advocates are trying our best to change. If awareness week taught us anything, it's that there are many many sufferers desperate to be heard.  However being ill there's only so much we can do. We're the only ones that know what it's really like but we need someone healthy to champion our cause. To put in the muscle and energy that we can't to make this illness more visible. 

Sian

X

Are you better now?

The other day I got asked this and to be fair I got quite angry. Seriously had they not been listening to me? Did they not understand? But you know what to paraphrase Christine Miserandino (mother spoons) again I know I have been on about her a lot recently, anyway how can I explain an illness that I can hardly explain to myself. For a while now I have been wanting to post an article that I found and after that incident I think now I have found the perfect post for it article. It is all about living with an invisible illness and the effect it has on sufferers and their carers. It explains that society will only 'allow' us to be sick for so long, that people with a chronic illness or chronic pain are uncomprehendable. Toni Bernhard explains that 'yes it's okay to get sick or be in acute pain due to an injury or surgical procedure, but then we're supposed to get better.' Oh how I wish that was the case but this is the perception that people have of health. The only other alternative that we really know is of terminal illnesses. But ME, CFS and fibromyalgia or many other chronic illnesses do not fit these categories and when it is a young person suffering from them it is even less easy to comprehend. I am sure many people look at me in my wheelchair and wonder why I am there. I am not head to toe in plaster cast and nor do I look overly 'sick.'

But there lies the crux of the matter. When I am that bad I'm lucky to be able to move around the house let alone to get out, even with a wheelchair. Today I was in so much pain that I couldn't even face getting up to the doctors. Sounds daft right being too ill to go to the person who is supposed to help you get better. But when your whole body is whracked with pain and you're feeling pretty delirious with it you're going nowhere. However on those days that we can get out and maybe socialise Bernhard again says 'if they see you doing anything "normal" they assume we're 100% well.' They can not fathom that we 'came from the bed and will collapse on it after,' even after something as simple to them as going out for coffee. It is as though we are expected to be either on or off, sick or not, okay or not okay. You are out so therefore you must be better. Many a time I have heard those phrases Bernhard references 'hit the gym' and 'stay in shape' and I have reacted poorly. But can you blame me? They knew full well that I was no slacker and was obsessed with working. Obviously now personally using a wheelchair does dispel that myth somewhat but there have been plenty of times where people have thought me better, even when they know I use a wheelchair.

They can little understand the consistency of a chronic illness, how it never really goes away. How it dominates everything. It is not like having a cold, then recovering and then catching another. You have it ALL THE TIME. It just varies in its severity, like the volume button on a stereo, it can increase and it can decrease but often it's not you controlling the dial. As much as it pains me to say it ME is at the centre of my world, everything revolves around it. It has to in order for me to try and tackle it. But that is not to say that I give in to ME. I do not want my friends and family to only think about ME when the think about me. There is a person behind all this pain and fatigue. A person that still wants to love and laugh and care as much as she did before. I want to socialise, and spend lots of time with my family. I want to enjoy meeting new people and learning new things. I want to enjoy seeing my nephews grow up, even though they cannot rugby tackle me anymore. I may not be able to be there physically as much as I would like but know that I will listen and do what I can, when I can. Do not stay away because I have enough to deal with. Yes I definitely do. But I don't want to be defined by my illness. It just may have to be when I am not having an all out flare.

Yesterday I was in all mighty pain even after my painkillers and usual extra methods (heat, electrolyte drink, massage) so in a bid to distract myself I asked my Mum to take me out. Oh bleep bleep bleep it was painful but to the outside world, maybe even to my Mum at times I'm sure this wouldn't have come across. Yes again I was in my wheelchair but I was trying my best to just appear okay. To not give in to the pain that was gripping my body and turning my stomach. I had found myself trying to 'get on with it'. Maybe a small part of me had thought "well, this is what life is going to be like" and to literally grin and bare it. To not let on how much pain I was in, feeling miserable and guilty and dragging other people down with me too. I'm sure they've had enough of me whingeing about how much pain I am in. But trying to not show the extent of your pain for a few days is tough. Trying to keep it at the back of your mind when your body is fatigued and  you can do little to distract yourself is nigh on impossible. Today I have been in a great deal of pain (I'm writing this at 3am oops, so maybe I mean yesterday). To the point where it took me ages just to get my phone from the side of my bed to text for help. The amount of times I had deliriously wondered why I was trying to use my hand as a keypad is beyond me. There was no question of grinning and bareing it. Then again, I did not brake down in floods of tears either as I have felt like doing. I simply did not have the energy to. The pain had my eye balls rolling and my concentration non existent. Everything was just pain.

Life with an invisible illness is tough for both sufferers and their carers. It's hard to know what to do. Do you go out and try to grasp some kind of normalcy? Or stay at home and be 'ill'. I guess the answer lies in the balance. Do what you can when you can. Surround yourself with people that understand when you are lying ill in bed or out having a coffee. Sometimes we do have it both ways but usually our lows outweigh our highs and those lows can certainly make us appreciate the highs all the more.

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.

The Spoon theory

I know some people might read my blog and think " Oh, look she's talking about going shopping and going on holiday, so maybe she's not all that  ill." Well I like to think that I write or moan and whinge about hard times too and just how much those good moments need orchestrating and how much they can really take there toll on fatigue and pain levels. When I say I'm going on holiday I hardly move more than 100m from my bed and am lucky I know the place and people well to feel comfortable and they are very understanding. It is not code for a club 18-30 full on party holiday. And when I say I'm shopping it generally means 'to get me out of the house' or to get something I need. Definitely never more than 2 hours.

So today I wanted to give you more of an insight into what it's actually like to live with a chronic illness. Away from any emotions, or lists of symptoms but what it is actually like to 'deal' with on a daily basis. In essence apart from the obvious or not so obvious to some how does living with a chronic illness differ from living without one? To benormal so to speak. This brings me on to finally talking about those spoons I mentioned. Or to be more exact about Christine Mierandino's spoon theory because to be frank it is a great description.

To give you some backround Miserandino suffers from Lupus and the spoon theory was born when out with a friend at diner her friend asked what it was like to live with. She knew all the ins and outs and had supported her for many years but what it was like to 'not physically but what it was like to be me, to be sick.' www.butyoudontlooksick.com At first she was at a loss, yes she could reel off symptoms but she thought 'how do I answer a question I never was able to answer for myself? How do I explain every detail of every day being affected and give the emotions a sick person goes through with clarity.'

What happenned next was that she proceeded to collect as many spoons as she could, probably looking and feeling like a mad woman and placed them in her friends hands. She 'explained that the difference in being sick and being healthy is having to make choices or to consiously think about things when the rest of the world doesn't have to. The healthy have a life without choices, a gift most people take for granted. Most people start the day with unlimted amount of possibilities and energy to do whatever they desire, especially young people for the most part, they do not need to worry about the effects of their actions.' Remember the post exertional malaise I was talking about it can strike after the smallest of actions. Today I am aching a lot from just sunbathing and writing yesterday. It makes life with a chronic illness a constant battle with your conscience about whether you shoud do something or not. There is no just 'popping' anywhere or acting on the spur of the moment. There is a lot of thinking and planning which in itself is drainng not to mention be a drain on your enjoyment of life. Take for example having to choose between using a commode or whether you have enough energy to walk to the bathroom. Whether or not you get dressed that day or shower. All of which are questions that we ask ourselves daily. Sometimes when it comes to big decisions like going somewhere  with family or friends and rule that it's just too much for you, you can run the risk of upsetting or alienating others or being known as a let down.

Let me use an example. Last weekend I went to my cousins for dinner, however firstly we were supposed to play a muder mystery game. Okay, it would have been played around a table but it would have required a lot more brain power etc. What I had to make them see was  that to do that was just energy that I did not have. To be able to get there and enjoy dinner and laughter was going to take up a lot of energy as it was. Just the 40 minute car journey would be a lot. But it was something that I was determined to try to do and luckily on the day that I had more energy. Luckily they understood about the game and we did have a great time but I definitely felt that seemingly simple event had took a lot out of me. Christine Miserandino explains that if you know a big event is coming up then you need to also plan  a 'scheduled crash landing' www.bbc.co.uk/news/blogs-ouch-22972767 this is a 'rest period to get over non standard events such as weddings or hospital visits.' However of course it also depends on how much energy that you have on that day and how much you do on that day.

The BBC recently blogged about the spoon theory on the link above and say that spoons have become a 'quirky' way of measuring energy for sufferers of a chronic illness. For each decision we make it is like 'deciding in advance which tasks are worth "sacrificing a spoon" for.' But back to Christine's story. So she's handed her friend the spoons. In this instance she had 12 spoons but that's just a random number not scientific. She explains that by using the spoons she 'wanted something for her to hold, for me to then take away, since most people who get sick feel a "loss" of a life they once  knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else... being in control.'

She then asked her friends to go through the activities of her day and her friend launched straight into an active diatribe. Christine soon asked her to slow down and realise that you can't just wake up and get straight into your day when you have a chronic illness and for many others too. There are times that you have to drag yourself out of bed one limb at a time. Having a wash might cost you one spoon or a shower maybe two spoons with having to stretch a lot more. Then to dry your hair would cost you another spoon. So that's around 3 or 4 spoons and you're not even downstairs yet. If you cook a breakfast that is possibly two spoons or if you have cereal or something  you don't have to cook that could be one spoon. Then of course there is going out or going to work. Driving will take up a spoon and who knows what you're going to face at work. A more productive day or dealing with lots of others will certainly use up more spoons than a quieter one. Somethings are beyond your control. Then of course there is what to do after work. How many spoons do you have left and what is the most effective way to use them? Fortunately or not I don't have to contemplate these things at the moment. As much as I really would love to. I can't even imagine it. Or in other terms I do not have enough spoons. Right now I just about have enough spoons to get around the house, to see family when I can and the occassional couple of hours out. No that's not everyday. It's about realising that things aren't as simple  as 'doing something' or 'getting something done'  that there are a 'hundred jobs in one.' Of course everyday is different; different circumstances; different symptoms as Christine explains 'some days I have more spoons than most. But I can never make it go away and I can't forget about it; I always have to think about it.' There is a way 'sometimes you can borrow against tomorrow's "spoons" but just think how hard tomorrow will be with less "spoons".' You are already putring yourself at an advantage and who knows what tomorrow could bring through symptoms or circumstance.

By using this method Miserandino really made her friend see the true all consumimg scope of having a chronic illness. It actually made her quite emotional and made her feel sorry for her. As they left the cafe Miserandino pulled a spoon from her pocket (what a thief) and said that it is always good to try and keep a spoon in reserve too. Just in case. No one knows what is ahead of us. I have to agree that this is a great description, no matter how whacky it sounds. It has really caught on too and is widely used in chronic illness forums and communities. With many people calling themselves 'spoonies'. Well I did always want to be Tina T Spoon from Button Moon. Tweeters can use #spoonie to see tweets from others and connect with other sufferers.

So there you have it the spoon theory. Basically it's about assessing your energy levels to see how many 'spoons' you have that day or moment and making lots of decisions about how best to 'sacrifice a spoon' that is going to impact your health and energy levels afterwards. She also jokes that when she can spend time with friends and family 'that they should feel special when I spend time with them because they have one of my spoons' or maybe more. In future blog posts I'll talk about how to learn to pace yourself and how to sacrifice those spoons in a way that is best for each individual. I hope that this post has enlightened you. It enlightened me and I have a chronic illness. But that is what it's like to have a chronic illness, that is what it's like to be me.