M.E?

Sometimes I do worry that everything gets classed as ‘ME’.

I am prone to having swollen glands and tonsillitus-type symptoms. If I manage to build up enough energy to get to the doctors there is never any sign of anything wrong. It’s ‘just’ the M.E.

I was told to go back to my GP when any new symptoms arise. I might as well set up camp in the reception area of the surgery…

My poor body is so out of sorts. You see the adverts on the tele about what signs to look out for when people are having a stroke…we have all of those symptoms at one time or another. I saw a campaign recently about being aware of brain tumours. Again those symptoms are the same as ours, although for some of us they fluctuate. I confess to googling my symptoms in the very beginning. A description of MS sounded incredibly familiar. I have read of M.E sufferers likening their life with this illness to how they felt during chemotherapy for cancer. I read that one sufferer felt even worse with M.E than they had going through their treatment for cancer. I have read that some doctors have likened the suffering that M.E patients go through as very much like that of AIDs sufferers in the last few months of their life. It is not a competition; just something to think about.

Baring this in mind, I have friends who have graduated as doctors. Not one of them learnt about M.E during their five years at university. I have a friend who is training to be a mental health nurse. He has covered M.E more than once. M.E is not a mental health condition. It is supposed to be 2012…I am lost for words.

How is it that our condition is still so, so misunderstand and brushed aside?

The serious stuff

Baring in mind what I have posted about emotion, I have to be careful here. I have been writing this post in stages over the last few days so that I can have a break from it before I get my knickers in too much of a twist. I am angry, but most of all, I am scared. For myself and for my friends and for the people like us. I do not pretend to be an expert on this topic. Far from it. These are just my thoughts…

Me? On benefits? I never in a million years saw it coming. It is soul destroying to be unable to provide for yourself, and your family. Do you think we want this? To be so ill we cannot earn a living and live a normal life? Do you think I racked up twenty-odd thousand pounds in student debt to get a degree and then not be able to use it? My savings, the money that was saved over the course of my whole life, are gone, spent on surviving and on the bare necessities. My money now goes on my prescriptions and my food and toiletries, things like that. Not holidays and a flash lifestyle like the media makes out.

If you have ever had the pleasure of tackling an ESA form then you will know how hard they are. I am unable to fill in the dreaded forms myself. There is a deadline within which the form has to be returned. My arms and hands are too weak to write legibly, the brain fog makes it near impossible to work out what each question is asking, my concentration difficulties mean composing a coherent answer is extremely hard. As M.E sufferers we cannot be pigeon holed and do not fit into either the Yes or No box. The system is not suited to us. A computer decides whether we are fit for work or not. Of course there has to be a limit and a cut off point, but the system, in my opinion, is wrong.

This passage springs to mind when I think about the benefit cuts…

“First they came for the socialists, and I didn’t speak out because I wasn’t a socialist.
Then they came for the trade unionists,
and I didn’t speak out because I wasn’t a trade unionist.
Then they came for the Jews,
and I didn’t speak out because I wasn’t a Jew.
Then they came for me,
and there was no one left to speak for me.” Martin Niemöller

Our grandchildren will ask us how people felt about it at the time, in the same way that I ask my grandparents about the miners strike and their experience of the Second World War. “How could people let it happen?” they might say. As a history student I know that such a topic will be studied at university in years to come. The Cameron Cuts. In our society we seem to only look after number 1. But what if you’re not well enough to? There are some incredibly poorly people putting their health at risk to protest and campaign against the current benefit cuts. I suggest a read of Diary of a Benefit Scrounger

Where will we live? How will we eat? Are they not basic human rights?! The rights of criminals and terrorists are being honoured but what about us? What if it was happening to you? I lost my health within 3 weeks. Good health is not a given. I do not want to have to rely on the state to survive. I would love to work and to earn my own living. I feel I am just a number. A number that needs to be crossed off so the government can say it has met some target. What do they think will happen? That by taking away our source of survival we will automatically either be fixed or disappear.

If they could see us now, all using our laptops, we would probably be deemed as fit to work in an office or call centre… What they don’t see is the hundreds of breaks we have to take throughout the day just to be well enough to use our computers for 10 minutes at a time. If they saw this blog they would probably assume I am clearly capable of working with a computer. They do not see that I write each post over the course of a few days. I do not sit here and bang out each post on the day it is posted. It actually takes me weeks to string the paragraphs together because that is the rate my brain will work at without throwing a wobbler. By posting yesterday I was left unable to do anything else, including having a shower.

They do not take into consideration the noise and ‘bright’ lights of an office. I understand that the country is in a mess and that cuts need to be made. But how will we, the weakest in society, survive? I have friends who, when their benefits are cut will be homeless because they have no family to look after them. Homeless. HOMELESS. I worry how I will be able to afford to pay for my prescriptions. If the government wants us to be fit and healthy enough to be back at work, taking away that money that pays for our medication is surely shooting themselves in the foot. I am so lucky and fortunate that my family will support me through thick and thin, but at the age of nearly 24 I will feel that I am even more of a burden when I cannot contribute financially.

I will stop now before I get too wound up.

I am scared.

Emotional=wreck

I can’t afford to cry or get upset. If/when I do the emotion completely writes me off. It is beyond my control. A family member was recently in hospital and, although I didn’t cry, the emotion and worry of it all knocked me for six for days.

I have always liked to know the end of films before I watch them. I’m not a massive fan of surprises. This condition has exacerbated my need to avoid surprises. If something makes me jump, the shock can last for ages and affects me physically.
One of my best friends lost a family member last year very suddenly. It broke my heart that I could not make it to the funeral to support her and my friends, all because the emotion had written me off. How dare my brain act so selfishly in my friend’s hour of need?! I was angry that this condition meant I could not even manage to make it in my wheelchair. The emotion had made me too poorly. I think it is the adrenaline that does it. It acts as poison in my veins rendering me useless.

This is what I find the hardest about M.E. It not only affects my life, but it has an impact on the people I love most in this world. It can do what it wants to me, but it is going too far when those around me are affected. It has got to the point where people have to keep me from things so that my health does not deteriorate. I know it isn’t my fault that I can’t cope-my brain is broken-but I wish things were different. I wish I was normal. I used to be quite good in a crisis.

Positive emotion is not as destructive but it works in the same way. I have always been one of those annoying people who gets excited over the smallest thing and about things way too early. I got very, very excited about a new pair of shoes a while ago. (My shoes always split people’s opinion!) Although I was sat down and had merely put the shoes on, the excitement zapped me of energy within a few minutes. Goodness knows what I’ll be like come Christmas Day!!!

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 🙂 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…