Anyone got a spare spoon?

http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf

The Spoon Theory has been really useful for explaining things to my friends and family. I have also tried to liken my life with M.E to a near-empty bank account. You have to spend your money very wisely and carefully to make it last. If you dip into your overdraft, the interest is extortionate and so it really should be avoided if possible.

This week I am trying to reserve as many spoons as possible for the weekend because I am seeing two of my best friends. As is the norm for me now, I have had to start getting ready well in advance so that, on the day, I can use most of my spoons chatting and laughing with my friends.

Before the weekend I will have got my coat of the cupboard, bent down to dig my shoes out of the wardrobe, get my clothes out ready, got a drink ready for the journey, maybe have a shower the night before… The day before I see them I will have as relaxed a day as possible, meeting only my baseline targets (shower, fresh air, stretches…) This is all so that I can make the most of my afternoon with the girls.

After I have seen them I will inevitably be short of spoons for a few days, but by keeping up with my baseline targets (the things I manage to do even on my very worst days) I will be avoiding the boom and bust cycle.

It probably all sounds like a lot to take in but give The Spoon Theory a read if you have a spare minute or two.

Bitesize

In the same way that it is impossible to eat a 9 inch pizza in one bite, it is impossible for me to perform tasks in one go. It is now necessary for me to break down my day into more manageable chunks, in the same way that you cut a pizza into slices. 

Take ‘getting ready’ as an example. The ‘Old Anna’ would have taken this as one, simple task and carried it out without a second thought. Now things are different. The task of ‘getting ready’ takes much longer, and not because I am the type of girl to spend hours in the bathroom making myself look my best for a night out. This once straightforward task has now had to be broken down into many, more realistic, tasks. 

I must first tackle the shower. I have a stool to save my legs and as you know I have had my hair cut very short to save my arms from struggling to wash it. I avoid baths because it is hard for me to get in and out of them. My core muscles struggle with keeping myself from slipping under the water completely and I was never really a bath person anyway. Shaving my legs is absolutely exhausting! It was never something I did everyday anyway but now I leave it longer as have to schedule it in on the weeks when I don’t need to use my energy on other things. This is all so I am not overdoing it. If I happen to cut myself while shaving, I bleed for a lot longer than I used to for some unknown reason so I have taken to using hair removal cream instead. This, too, is very tiring but I have my stool to sit on and a few minutes of rest while the cream works it magic before needing to be removed. I have to rest while showering. It is a case of shampooing my hair, then having a little break. Then shower gelling. Break. Face washing. Break…

This once easy task is now exhausting. I always need, and have, a rest after a shower before getting changed. I just tend to sit on my bed for a few minutes, with no TV or music. Purple time if you like. I am now ‘well’ enough to tackle getting dressed all in one go. Before it was underwear on, and rest. Top on, and rest. Trousers on, and rest. (Their were times in the beginning and during my last relapse when I needed help to get dressed. I don’t like to think about it.) After dressing I, you guessed it, need another rest. This rest is usually a little longer than the others. On some days having a shower and getting dressed is so exhausting that it writes off the rest of my day. Some days it is not possible to even attempt getting out of my pjs. Not because I am lazy and want to slob around all day, but because I am poorly. 

Next I have to brush my hair. My arms are now exhausted from the shower and getting changed but with my short hair it is now much easier than it once was. I no longer bother with make up or moisturiser or hair products everyday. I save my energy for watching TV, chatting with my family, reading, using my laptop, making myself a cup of coffee… 

On the days when I see my friends I tend to apply make up and so after my rest from changing I might sit in front of the mirror and, at a painstakingly slow pace, paint a mask on to my face, giving my arms a break every now and then. I find it hard to let people see me as I really am and prefer to hide behind the make up. Also it makes me feel good to see traces of the Old Anna again. I rarely wore make up before but now it seems I need it to make me look like my old self. My face is incredibly pale and a different colour from the rest of my body. I look poorly. Before, I was usually quite tanned. When I see my friends I might also try to do something to make my hair look less like Wolverine and dig the straighteners out. My sister helps me with this sometimes (although I have lost count of the times she’s accidently clunked me on the head with the hairdryer!) I like to look as near to my old self as possible; to have a few hours of fitting in and pretending that I am no different from everyone else.

In recent months, I have got better at not hiding the true me though. I bought some fake tan to make my skin look less see-through and to look a bit healthier. I rarely use it anymore. I have photos taken where the only thing the same as the Old Anna is my smile, and my ridiculous eyebrows! I have accepted the fact that this is how it has to be for now. I am too tired and poorly to bother hiding behind a mask of beauty products. I am learning to love myself just as I am.

So anyway, what I’m saying is that we have to break everyday tasks down into tiny pieces in order to make them more manageable and achievable. Cooking a meal would be the same. Chop the carrots. Rest. Get the eggs out of the fridge. Rest. Boil the water and rest while it’s boiling. Open a can of tuna while sitting down. Rest after you’ve done it, if you were strong enough to manage it by yourself…What on earth am I thinking of cooking here?! Haha!

I have been lucky. I was able to wipe the slate clean and start over, from scratch, building a new life for myself as a sufferer of a chronic illness. I have no other commitments other than getting better. That is my one and only focus really. For so many, this is just not possible. Some people are still able to work, and can’t afford not to. Many are raising families at the same time as feeling incredibly poorly. Many more do not have the help and support of their family and friends like I do. 

Ouch!

Yesterday the pain is my hands was pretty bad and so I was unable to type properly and upload a post. Today it is a little better.


Everybody has aches and pains at one point or another, but with this condition it is yet another symptom to contend with. Pain-wise I know that I get off lightly compared to many others with M.E. Joint pain is extremely common and I think I feel this mostly in my knees. I also feel it in my ankles, hands, shoulders…

Headaches are common too, as they are for so many people, but I would say I experience more sharp pains in my head than the usual headaches I would get every now and then before I was ill. I was prone to migraines too, but I have experienced very few since having M.E. Every cloud…

My collar bone is an area where I experience the most pain I think. It feels like the muscle is being torn away from the bone. A very unpleasant, and painful, feeling. Luckily for me this does not tend to happen everyday but for other sufferers the pain is ever-present. 

Stomach pain is common for me. I am in the process of altering my diet to see if this can help the problem. (I will tackle diet another day!) The pain is often so severe that I feel the need to double-over, but I am too weak and fatigued to do so most of the time. Instead I have learnt to simply remain calm, control my breathing and try not to panic until the worst is over. 

I have been told that the pain isn’t doing my body any harm. My brain is merely confused and getting the wrong signals. In a way I suppose I am not in pain, my brain has just convinced itself that it is. 

My body doesn’t seem to cope well with pain. I think it has something to do with adrenaline. My body seems to become overwhelmed by all that is going on and that writes me off. If I have a mouth ulcer or my wisdom teeth are starting to come through, my body turns into zombie mode. I notice it in my legs most of all…they become even weaker than usual and I am zapped of any energy I may have had. 

Shhhhhh

Noise sensitivity.

I have always been as blind as a bat and now it seems I have supersonic hearing like they do. The door knocker on our front door not only makes me jump, but is incredibly loud. It can take me a while to get over the shock and noise (which leave me unable to move) in order to get up and shuffle to the door.

People’s voices can be uncomfortably loud, even when they are speaking at a ‘normal’ volume level. I feel awful for repeatedly asking my family to speak a bit quieter but the noise actually makes me ill. It unsettles my brain in a way I cannot control. Again, it is not a case of pulling oneself together to get over it. My brain, body and I seem to be three separate things since being ill. I have very little control over them.

I have the volume on our tv on about ‘8’ while it would usually be on a number much higher. My dad often has it on a number in the late twenties. It is overwhelming to have the volume too high. My brain is already struggling to process the moving images on the television. To have too much noise at the same time isn’t good and is more than my brain can cope with.

I can no longer multitask. I used to be able to juggle a hundred things at once. My brain now shuts down in protest at being told to deal with more information than it can cope with. If I am watching the television, I usually can’t manage to send a text message, or join in a conversation, or use my laptop at the same time. My brain focuses solely on the tv and blocks out everything else.

Since being ill I have been to one house party. Social situations alone can be overwhelming and overstimulating for us sufferers as there is so much to take in and cope with, but this was even harder. It was incredibly loud for a person who finds the rustling of a newspaper too much at times. On the journey home I can feeling very sick and remember shaking at the over exertion of it all.

As well as volume, the tone of a persons voice can bring about difficulties too. If something is said in a confrontational way my brain seems to immediately shut down. I don’t know why. These days I am able to avoid a panic attack and stay calm but still I am left speechless. It is as if my brain cannot process things at all.

Listening in itself can be exhausting. It requires more concentration than you would think. Your brain has to focus enough to follow the conversation, process the information, think up the appropriate response and then speak it out loud. When I am ‘Zombie Anna’ some people like to talk at me to include me in conversation, for example. This is usually the last thing I need. Just carry on around me and I’ll rejoin the conversation when my brain has calmed down.

When I am well enough to listen to it, music has been my saviour. It is a wonderful tool. I don’t often listen to music these days but I have made progress in the two years of illness and can now cope with it on some days. I have discovered Ludovico Einaudi and he is perfect for the days when I’m not feeling too clever! I have fallen in love with Mumford and Sons all of a sudden and it’s very hard to sit still when listening to them. I have recovered enough that I can now sometimes tap my feet in time with music for a couple of seconds. Yay! I cannot wait for the day when I can dance again. I am too slow to move in time with the music and my energy supply won’t let me try to boogie for more than a few seconds. I’m sure it would be very entertaining to watch. Probably a bit like Dad-dancing, but worse. One day I hope to throw some serious shapes on the dance floor again. (I was always one of the first up dancing and didn’t even care if I was all alone with the dance floor to myself.)

Outside noise is largely out of our control. In the summer many of us have to keep the windows shut despite the sweltering heat because it makes us too ill to hear the noise of children playing, wind chimes, lawn mowers or traffic. As I am writing this there is a man with a leaf blower outside about 50 metres away. My windows are closed but it still seems incredibly loud. It is actually hurting my brain. It makes me clutch my head to try to shield my brain. It’s a bit like when the dentist cleans your teeth with that horrible high pitched electric thingy and the noise goes straight through you. That’s what it’s like. Our tolerance for noise is apparently non existent. Still, everyday life goes on. It can’t stop just because it makes me ill.

Surprise!

Apologies if this is incoherent. My brain has tried its best.

There is an ever increasing list of symptoms and ‘happenings’ that come with having this condition. I admit I had no idea what was in store for me. After all people with M.E. were just more tired than the rest of us weren’t they?

My M.E. is still symptomatic apparently. I still suffer with the same symptoms I had at the beginning in 2010. The list is ridiculous. My original symptom list, that my neurologist asked to see, covered at least 3 sides of A4 paper. Some are byproducts of being ill for so long and not necessarily a symptom of M.E, but all of them are far from lovely. It was a huge shock when I started losing my hair last year. Not in fistfuls but in small clumps. I was told it was just my body’s reaction to being so out of sorts for so long. Luckily that has stopped now and I never had any obvious bald spots.

Problems with circulation can be common for loads of people but it wasn’t something I’d experienced before. Now I often have two purple (cold) toes and three red ones (boiling hot) on the same foot. My hands and feet often ‘go’ and I am left with swollen, bright red hands that feel extremely tight, and burning cold feet. This happens most days, usually in the evenings. Feeling as if my blood is running cold or that my veins are full of poison are regular occurrences too.

As a healthy person, my energy levels could be improved by having a bar of chocolate, for example. As a sufferer of M.E. this is no longer the case. My energy levels are not noticeably improved by eating and I steer clear of sugar boots or energy drinks as they make me feel very peculiar. It seems to trigger a release of adrenaline which is my worst nightmare. I am left feeling wired and more zapped of energy than before. Adrenaline seems to attack my body instead of help it. (It’s hard to explain sorry, but adrenaline has become the baddy!) Boosting our sugar levels will not give us a burst of energy like it once did when we were healthy. This condition seems to be the exception to the every rule.

My body sometimes reacts to eating meals. I am in the process of dissecting whether it is a certain food type that triggers this. I have cut out gluten and lactose which is helping stop the stomach pain I get, but the ‘crashes’ after eating are still occurring. My extended family had to witness this for the first time the other day. I never wanted them to have to see me like that as I imagine its very upsetting and unsettling. They usually only see me at my ‘best’ but as we were all staying together for a few days it couldn’t be helped. These crashes are just a normal part of my life now. How to describe a crash? Losing control of my body temperature, becoming temporarily paralysed (yes really), dizzy, faint, nausea, cold sweats, tremors, extremely weak legs, incredibly slurred speech if/when I’m able to speak, involuntary tears, not able to get my words out correctly or form a proper sentence…

M.E has affected my heart too. This is very common. Two years down the line and I can still be scared of the palpitations and seemingly irregular heartbeat. My breathing is involuntarily affected too. Now that I am used to them though, I do not panic like I once would have. I have become very good at staying calm. I seem to take it all in my stride most of the time. These symptoms are the norm for me now.

An itchiness under the skin is another symptom that I would never have associated with an illness where sufferers are ‘just tired’. The worst is when it happens under my scalp. This is usually how I can tell if I’ve overdone it. I get the itchy feeling (like insects crawling around under your skin) all over my body but these days I notice it most on my brain. When this happens it is definitely time for ‘purple time!’

Those of you who have seen me over the past couple of years will know that I now walk at snails pace! I am getting speedier as time goes on but it may become time before I’m back to my best. Recently I have started to take Mr Walking Stick with me if I’m out of the house. I can now coordinate myself to use it properly. Hooray! If anything it is stopping strangers from becoming impatient if they happen to be walking behind me. Using it also stops people from assuming I am a young, fit and healthy woman who should be giving up her seat for those who really need it…

Despite all this, and so much more, I’m not unhappy. Not at all! This illness has become my norm and I have been able to accept it and make changes to fit the state of my health. I have the support of my family and my friends, both new and old and I am happy ‘in myself’ as they say. To sit and ask ‘why me?’ isn’t something I have spent much time doing. It’s not in my nature and I’m thankful for that and so much more. Of course having this illness is far from okay, but it is what it is and I have to get on with it.

This blog is merely to help people understand the condition a little bit better. It is soul destroying to suffer with an illness that is so misunderstood by the doctors and medical professionals who should be helping us to get better. Being told it’s time to pull oneself together and get better so that ones family can get on with their lives is not something you wish to hear from your GP. If I could make myself better any faster I would have by now. Who on earth would choose to prolong this state of ill health?! If I had any other illness, would we be treated in the same way?