In our shoes

This post has the potential to be very, very long but I shall try to keep it short.

All of my symptoms are classed as normal now, because I have M.E. But of course they aren’t normal. If a ‘normal’ person felt as poorly as we do for just half a day of their life I can assure you that they would not feel that it was okay and fine. Trust me I’ve been there. I kept diaries of my symptoms in the beginning. I am learning the hard way how real M.E is.

How would you feel to have at least a 50% decrease in your mobility levels?

How would you feel to be told there isn’t anything that can be done for you? Worse still, you may be told that this illness that you’ve been diagnosed with isn’t really a ‘proper’ illness anyway.

How would you feel, after years of independent living, to have to rely on your family for almost everything?

How would you feel for it to be necessary for you to be spoon fed?

How would you feel to know that your illness is having a detrimental impact on those around you, who you love the most?

How would you feel to be suffer with an illness so, so misunderstood?

How would you feel to be told that it’s time you got a grip and pulled yourself out of this rut so that your family can get on with their lives…by the very doctors you rely on to help make you better?

How do you think it feels to feel that your life has been taken from you, but you are still alive?

Invisible illnesses are tricky things. I can understand why there are misconceptions about this illness. There is a lack of physical evidence. My blood tests come back clear. There are no physical signs of my pain. My glands are usually swollen, my speech is slower and slurred, I walk at snails pace, but other than that I’m not sure there are any physical signs that I’m unwell, except that I look like death 99.9% of the time haha!

Bed days

Involuntary muscle twitches. Check. Dizziness. Check. Nausea. Check. Fatigue. Check. Feeling faint. Check. Painful and paralysed legs. Check. Brain fog. Check. Headache. Check. Abdominal pain. Check…

Today is looking like a bed day. It can’t be helped. It’s probably the best place for me. On bed days my ever-present symptoms are worse than they usually are and I feel too poorly to be anywhere other than here. At least I’m warm and cosy hey?! And I am able to use my laptop in short stints. Every cloud…


Wales are playing Argentina today but I’m not able to watch. I don’t often manage to watch sport anymore. The combination of noise, moving pictures of the TV screen and adrenaline is too much for me to cope with apparently. I had to leave the room and take myself back to bed. Family members pop up to check on me every now and then but I mostly need to be alone. On bed days I just have to go with it; to lie here and wait until it’s nighttime and I can, hopefully, go to sleep. When I’m asleep it all goes away. I don’t tend to get bored. I feel too poorly. Usually I don’t do anything other than lie here. It is lovely when I’m well enough to use my laptop like I am now. 


Tomorrow I am seeing a couple of friends from university. Fingers crossed. I’m hoping that if I’m nice to my brain and body today, they will be on their best behaviour tomorrow…


I confess to still, after two years, getting a bit scared on days like today. It isn’t nice to feel so poorly. You’d think I was used to it by now. I would love just one day off from all of this. Funnily enough I take all of this as a good sign that I feel this way. In the beginning, and only 12 months ago, I was too poorly to really notice how ill I was. Now, with the brain fog much improved, I am more aware of my situation. 


I hope to manage to watch a DVD later. Something simple like Toy Story. Staring at the same four walls just isn’t as much fun as watching Woody and Buzz. I think a shower is off the cards today. It just isn’t wise to push my body on days like this. 


On a more cheery note, this week marks an anniversary for me! It is one year since I moved back upstairs to my bedroom after having to sleep in the dining room when I was too poorly to get upstairs. Three cheers for me! I hope I never have to live down there again but I know it is out of my hands. What will be, will be.


I am one of the lucky ones. Not everyday is a bed day for me anymore.


“Just because today is a terrible day doesn’t mean tomorrow won’t be the best day of your life…You just have to get there.” Unknown 

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!!!