Wild nights in

Today is a poorlier day than yesterday. I keep an activity diary but I cant see that I did anything more than usual in the last few days. Ho hum. Life with M.E is full of surprises! This afternoon I’ve been struggling to sit up. Sitting up…sometimes I can’t manage it because my core muscles are too weak but usually it is because I feel too dizzy or faint. Even if I put my legs up on a foot stool or chair, my brain protests because it refuses to compromise. It seems to be happiest when my body is as near to horizontal as it can be without feeling like the room is spinning. It wants me to be reclined in bed. I sound like such a lady of leisure. Maybe I should employ someone to peel me grapes and fan me to complete the look!

So here I am, meeting it’s demands and lying in bed. My heart is playing up too and my whole body shakes and moves to the rhythm of my heartbeat. My head wobbles around like a nodding dog. This is different from the tremors I get. It’s quite scary. “At least your heart is still beating” was what my GP said…well yes there is that! This all happens quite a lot. I caught it on video once. There happened to be water bottle at the bottom of my bed on the opposite side to me and, although I wasn’t touching it, the water was moving in time with my heart. I’m in a bit of pain this evening too but I’m hoping it’ll leave me alone soon.

I can cope with watching the tele this evening ūüôā Yay me! The TV in my room is maybe only a few metres away from where I am in bed but I will have to build up to making it over to put a DVD on. Let’s hope I don’t need the loo anytime soon! Maybe I’ll stick with the TV channels if I can find something decent to watch. The Big Bang Theory is a favourite of mine but I don’t think I’ll ever love anything as much as I love Friends. I hate reality TV usually but some reason I love Keeping Up With The Kardashians. What has happened to me?!

Boxsets have been a godsend if you discount the constant need to get up and change the disc over. It’s a good way to ensure I don’t over-rest though. That isn’t good for us either. Soon it’ll be time to dig out the old faithfuls like Home Alone and Love Actually! I haven’t been able to make it to the cinema since I’ve been ill but I like getting round to watching all the latest releases on DVD. Comedy has always been my favourite. Scary films are a massive no no! Even Harry Potter is too scary for me. The Woman in Black has scarred me for life!

My arms a bit too weak to hold my book this evening so I’ll save that for another day. Reading has become a luxury now because of my difficulty concentrating but it’s always lovely when I manage a chapter or two. Simple pleasures.

Identity

Who am I now? If I had to define myself now I would really struggle. Of course I am a daughter, a sister, a friend, a cousin and I am so lucky and happy to be those things. But I don’t know what else I am. The things that defined me as a person are gone. My job for example. I miss my job. It was the one thing I felt I was good at. I thought I would have a connection with the people I worked with for the rest of my life. I know that I could not have stayed working there forever. I was in the process of looking for a ‘proper’ job after graduation, but I would have stayed in their lives forever. This illness made it come to an end in a much too abrupt way and before I was ready. I miss them. It was the hardest part of being ill, giving up that job. I think it broke my heart. On my last day I sobbed embarrassingly as if it was the end of the world. It was. It was the end of my world as I knew it.

I had a summer job too. I loved it just as much. I had worked there in some capacity since the age of 13. I loved the summers. The people, the socialising, the responsibility, the fun, the laughs. I do not hear from any of my former colleagues now. I thought they were my friends. I admit I didn’t make the effort either. I was either too poorly to get in touch or it hurt too much to do so.

I’m finding it hard to reflect on my old life. I can’t remember what I was like. I was hardworking, always on the go. I was active. I loved to go out dancing. I was a student, then a graduate. I was independent. All I know is that I feel I have changed almost completely, on the inside at least. I used to be defined by the things that I did. Now I’m not able to do much, in comparison.

Am I now merely an M.E. sufferer? Just one of the very many? Somebody people think of as a benefit scrounger and work shirker? Somebody that the government tries to ignore and sweep under the carpet? An ill person whose illness is still so misunderstood and debated? Whether I like to admit it or not, my illness defines me now because it is all-consuming. When you no longer have good health, your whole life is affected. Being poorly has altered my character and personality. It has changed who my friends are and who I am.

Now when I let/make myself think about it, I feel redundant. Useless. I have nothing to offer and nothing to give. I am too poorly to offer my friends a shoulder to cry on even. I have had to become selfish and it is a trait both foreign and disgusting to me. I hate that people’s days and lives have to centre around me. Anna needs to be fed. Anna’s clothes need to be washed. Anna’s bed needs to be changed. Anna isn’t up to holding a conversation today. My mum has to fill in my medical forms and benefit forms because I am too poorly to do it. I can do next to nothing for myself, although I am now starting to manage a few things. I rely completely on others. I feel like an incredibly boring person now. My brain is too slow to cope with the everyday laughs and banter that I was a part of before. I have become ‘simple’. I have lost my purpose.

I am able to see the positives too. I have not lost my sense of humour. I am still a tough cookie, perhaps even more so than before. I am proud of my ability to pick myself back up after every setback or relapse and keep going everyday. It isn’t even something I have to consciously think about. I just do it. Now I am carefree for the most part. I have mellowed. I hope, if I recover, I am able to remain carefree. It is a trait I like. I worried too much before about things that were not worth even thinking about. I still like things to be fair and just and have come to believe that regrets are a complete waste of time and energy. I have developed a thicker skin which is needed when dealing with the misunderstanding and stigma of this illness.

Today is a thoughtful day and my life feels very much up in the air. This is not a sad post. I am merely being matter of fact.

I am still finding my feet in the uncertain world of chronic illness…

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.¬†