ME awareness day 2017.

ME awareness day

It's that time again when ME sufferers like myself try hard to spread awareness of our illness and desperately try to get people to understand.
I don't know of anyone who wants any sympathy, especially as many people go through all sorts of illnesses and difficulties in their lives.
What we do all hope for is understanding and empathy. We've gone on for too long without any proper, biological treatment and are often blamed by medical professionals for "not trying hard enough" or "not wanting to get better".
Since the massively flawed PACE trial was debunked we at least now have the proof that CBT and GET do NOT cure ME. ME isn't caused by negative thoughts and nor are we avoiding life. I can't think of anyone in their right mind that would ever choose this way of life. Why on earth would we choose to miss out on any form of normality? Why would we choose to put ourselves through the hell that is the benefits assessment system? Why would we choose to be mis -believed, judged and abused by people who have no understanding of the severity of ME? Why would we choose to miss out on the life that others are happily living?
The only answer is, we wouldn't. NO ONE would choose this illness. It brings with it nothing but misery, suffering and sadness.

ME is a serious, life limiting condition that has a huge amount of symptoms. Every sufferer has their own experiences but many of their symptoms overlap.
The overwhelming symptom of ME is exhaustion and PEM (Post exertional malaise). We are not talking about normal "tiredness" here. We are talking overwhelmingly, bone crushing, all encompassing exhaustion. Even thinking can feel too much. No matter how much sleep we have, we never feel energised and full of life. I personally need at least 10 hours of sleep a night to even function, yet I haven't woken up feeling refreshed for over 15 years now. NOT ONE SINGLE DAY have I had in those 15 years where i've not felt tired or exhausted. It's become my normality.

Living with this level of exhaustion is so tough. It controls absolutely everything I do. I can't even have a bath without considering if I have enough energy to get through it. Every single thing I do, quickly uses up my very small amounts of energy each day. I have a constant battle between wanting to live a normal life and what my body can physically, mentally and emotionally cope with. (Energy is used up just as much by mental tasks and emotions as it is by physical activities).
Inside, I am still the active, determined, capable person who loves to get things done. Sadly my body is too ill to allow me to be who I really am.
I used to swim 40-60 lengths without much effort, now I struggle to even get out of bed most days. I spend a lot of time on a sofa bed, feeling dreadful, dreaming of those days when I could do whatever I felt like doing.
I feel like a prisoner in my own body. I'm trapped inside a body that cannot cope with any exertion of energy, no matter how small.

The symptoms I personally have, on top of that never ending exhaustion, just add to the daily suffering. I'm often dizzy or light headed. Nausea can hit at any time and go on for hours. I'm often in pain somewhere in my body and it can happen at any moment. My digestive system is hugely affected and IBS is another symptom that can creep up at any time and make me feel dreadful.
My cognitive function is hugely affected.  I used to be quite a smart person, but most of the time I can't even think of the simplest word. My short term memory is now terrible. I struggle to focus on things for too long and my concentration is poor. It feels like my head is full of cotton wool and so heavy at times that I can't think straight. My temperature control is a complete mess and I am often freezing cold when everyone else is warm or i'm having a hot flush and over heating. My sleep is never refreshing. I desperately miss those days when I woke up from a good night's sleep and felt ready to face the world.
My mental health is also affected. I don't see how anyone could be ill for every single day of their lives for 15 years and not feel intense sadness, loss and frustration. I still don't know how to cope with the all consuming feelings of grief that I have for my health. I am yet to find some sort of acceptance for how my life has turned out. The desperation to get better is overwhelming. I cannot think of anything I want more than to get some health back. A complete cure would feel like a miracle to me, but to be honest, just an improvement so I could live even half a normal life would be amazing.
Anxiety also plagues my life and the more ill I get, the more anxious I get. I can't seem to control the fear when my body feels like it's not coping. The genuine concern that this could go on for many many more years fills me with fear and dread. 

Sadly I have got worse as the years have gone past. I used to be able to get out and about more, of course needing lots of rest in between, but still able to enjoy some moments of normality.
Now, everything is a struggle. I fight and fight to grab any moments of life that I can. Music concerts are a big love of mine and I do all I can to get to some each year. The suffering afterwards is intense and I have to prepare as much as I can before hand. Even during the concert, i'm busily coping with the increasing symptoms as each hour passes. I cannot give up on trying to do these things though, as it's those moments in life that keep me going. One day I dread that I won't be able to do them, so all the while I can suffer to do them I will.

The main thing I want healthy people to understand is that when you see someone out and about who has a chronic illness such as ME, you must not assume they are well or doing better. You have no idea what they've done to get out. You must not judge them and think that they can't be telling the truth when they say how ill they are. Most likely they aren't feeling very well but are trying to live life. They may be having a rare better day and not suffering as much as they normally are and they are making the most of that day, as believe me, they'll soon be back to suffering like normal.
You don't see the hours spent in bed or at home, with illness taking over them.
You must also remember that looking well doesn't equate to feeling well. Us chronically ill lot still want to make an effort to look our best. We want to use make up to cover up the dark circles and ill pallor and we want to wear nice clothes and to do our hair. Why should we stop caring about our appearance just to convince others that we are genuinely ill?

So PLEASE when you see someone you know who is chronically ill or see someone who looks "well" parking in a disabled space, take time to think before judging. Don't assume you know more than they do. Don't assume that person is fully well and is just faking it. Just accept that not all illness is immediately obvious and give people the benefit of the doubt. You just don't know what someone is going through inside. Be kind, have empathy. 

I've written this is small sections over a period of time, to help raise awareness of ME.
I'll finish by sharing a few things about life that I most miss. There is a brilliant campaign on social media called #MillionsMissing, that highlights the huge number of people currently missing from normal life. So so many very ill people with ME who are no longer able to live the life they used to.
So inspired by this here is my list of what I miss the most:

-I miss feeling healthy.
-I miss being able to do anything I choose, when I choose to do it. 

-I miss being able to walk without feeling exhausted by every step.

-I miss waking up feeling refreshed from a good night's sleep. 

-I miss eating lots of foods that i'm now intolerant to. 

-I miss going out without considering how ill i'll be or how much i'll suffer after. 

-I miss going a day without pain.
-I miss going out dancing the night away. 

-I miss being able to run. I never particularly wanted to run when I was able to. Now I can't I wonder what it feels like. 

-I miss being able to work and provide for myself. 

-I miss having a social life and going out with friends. 

-I miss going on long walks. 

-I miss doing sports and being active. 

-I miss being able to think straight and having a clear head. 

-I miss spending an entire day out without suffering during and after. 

-I miss having hope that things will get better. 

-I miss jumping on a train, alone and going shopping for a few hours. 

-I miss doing really physical tasks. I loved nothing more than getting my hands dirty and working hard. 

-I miss listening to music without being drained by it. 

I could go on and on and on, but mostly I miss the potential I had. I miss my life.  

15 long years.

15 LONG YEARS

15 Years ago today, I had a nasty cold and throat infection. I've been ill, every single day since. I never got better.

That cold turned into ME, a chronic illness with no treatment or cure, which has plagued my life daily ever since. I can no longer remember what it's like to feel well. I can't remember what it's like to not feel utterly exhausted by anything and everything. Around 10 year ago I was also diagnosed with Fibromyalgia, a chronic illness that causes widespread pain all over the body.
Every single day, without fail, I have at least one symptom. Some days are slightly easier to cope with where my exhaustion will be general tiredness for a few hours, my pain will be bearable niggles, my dizziness will be lightheadedness, my IBS will give me a break. Other days i'll feel so overwhelmingly exhausted I won't be able to even think straight. The exhaustion is all encompassing. Every part of my body feels heavy, i'll have pain deep inside my joints and muscles, I can't think of simple words, I can't concentrate, my digestive system is a mess, nausea can be overwhelming and i'll feel so dizzy whenever I move.
The most difficult part of having ME for me is the spontaneous nature of the illness. I never know when a symptom will rear it's ugly head. On one of the better days, I can feel not too awful, then out of nowhere i'll feel extremely sick, or a searing pain will start, or i'll start feeling that tell tale sign that my energy has run out and i'm in for some suffering.
Nothing I ever do, be it mental, physical or emotional, ever goes unpunished. The most significant sign of having ME is the post exertional malaise that occurs after any form of exertion. This exertion can be a day out, a short walk or for some just moving out of bed.

Over the years i've had months completely bed bound and am now mostly housebound. I get much worse during the winter, with the lack of daylight, the cold and the increase of bugs around. My immune system is weaker so I catch things easily and also take longer to recovery than healthy people.  The summer can give me some relief, although a better day for me would be a poorly day for most. I'm so used to feeling ill, that it's my normal. I know when I wake up that I won't feel refreshed. I know that I won't be able to do everything that I hope to. I know that even if the day is going ok, that worsening symptoms are on the way.

Despite being ill for 15 years, I am still struggling so much to accept how my life has turned out. I still get frightened by just how ill I can feel. I still have overwhelming frustration that I can't physically do what I want to, when I want to. Some days simple walking is too much. Most people don't think twice about walking. For those of us with chronic illness like ME or Fibromyalgia, it's like running a marathon.  I used to be able to walk for miles, swim 60 lengths at a time, cycle to work etc... etc... yet now I find the simple task of walking just too painful or exhausting sometimes. 

I feel like my life sort of froze at the age of 24, and i've not been able to live a normal life ever since. I can't work, as I would never find an employer who would put up with the level of sick days I would have to take. Through the winter I can not leave my house for weeks at a time and then when I do leave it's for Doctors appointments or to stay with family. Even on my better times I wouldn't be able to work a full day and i'd be so ill after, i'd need days to recover.
One of the biggest parts of a person's identity is what work they do. For many it's who they are. For those of us who aren't well enough to, it's something we are constantly judged on, even by strangers who know nothing about our lives.
By the age of 39 I always imagined I would have a career, a husband, children, a car and a busy, active life. I have succeeded in getting none of these things.
I've spent the last 15 years hoping and waiting for my chance to re start my life but I'm starting to come to the realisation that may never happen. I may never get better from this. Unless there is a biological treatment/cure found, my life may always be plagued by illness. Some ME sufferers have slowly recovered and have got their lives back and it was something I always hoped would happen to me. Now I struggle to cling on to that hope, as I've progressively got worse over the years.

Having a chronic illness is hard enough, but people's ignorance and negative assumptions about those with chronic illnesses makes it even harder. Many people seem unable to open their minds and have empathy for others. Unless they can see a physical disability, then they presume you are fit and well.
I hold a blue parking badge, which enables me to be parked nearer to shops etc... which limits the distance I need to walk. I often use a wheelchair or a mobility scooter to get around as some days I just can't walk more than a few steps or it helps reduce the pain I have and allows me to be out longer by limiting the amount of energy I'm using, yet i've had people give me dirty looks and even make cruel comments or insults about me using that space, despite the fact i've had to prove my entitlement to that blue badge. The fact that some days I can walk yet others I use a mobility scooter/wheelchair is something that some people can't get their heads around. For some it's very black and white and people like me obviously don't need those mobility aids but are using them to mislead people or to get sympathy. 

Even doing my hair and make up can make people think I look perfectly healthy. Being chronically ill doesn't mean you no longer care about your appearance and I use make up to feel better about myself. It doesn't mean I feel better, it just means i'm trying to have some semblance of normality. Again, sadly, this often means people think i'm faking illness or aren't as ill as I claim to be. Make up doesn't take away pain or give me energy.
Why should we have to prove to others all the time how sick we are? Why do we have to waste energy trying to make people understand that chronic illness is just that, chronic. Why do we have to live our lives being scrutinised by people who have no knowledge of chronic illness?
If I had a leg missing, people would automatically understand that I had limitations and couldn't do things that others could. The fact that I have a body that can't function normally but looks "normal" means i'm often misjudged and misunderstood.

The only way I know how to cope with this illness is just to accept what is. I can't change this. I've tried so many things yet nothing has given me any noticeable level of improvement. I just have to continue pacing my life as I do now although I will also continue to push my limits to enjoy things that matter. I cannot have more years pass me by without grabbing what happy times I can. I know a concert will make me ill for many days/weeks after, but the joy I feel during those concerts is worth the suffering. The happy memories give me something to look back on. Holidays will always make me ill. I will always have to cope with the daily symptoms whilst enjoying some time on a beach or sightseeing in my favourite place on earth and I will suffer for it when i'm back home, but those times are what keeps me going. It's what I focus on when times are really tough. Doing things I love doesn't mean I am magically better all of a sudden. It means I am fighting to have some good times to break up the bad.


I think i've mumbled on long enough. I hope this is some what coherent but my brain is a jumble of thoughts and words and the brainfog today means I can't quite say things how I want to and I can't remember all I wanted to say. I almost have too much to say, too much I need to offload, but the tiredness i'm feeling today is making this very hard. I've worked on this for a few days now, in small amounts but still can't get it to read how I wanted it to. So I decided to just mumble on, get out what I could and just hope it makes some sort of sense. I'm sure the grammar is off in places and i'd be shocked if there weren't any spelling mistakes, but right now i'm too tired to care! lol

I'll leave you with one request. If you hear of someone with chronic illness or know someone with one, please try not to make assumptions about their lives or what they can or cannot do.  Just because you may see that person online or in a shop, it doesn't mean they are faking illness or are better, it means they are just trying to live, despite the limitations put upon them, through no fault of their own.
If you see someone walk away from a car parked in a disabled parking bay, don't presume they aren't sick or disabled. So many illnesses make people very ill but don't affect how they look on the outside. They may be fighting a daily battle you know nothing about.
If you see someone post photos on social media of a day out or a happy, smiley photo, don't assume they feel better. Just remember that they are just trying to share a happier time with their friends. You won't often get to see the realities of their day to day suffering, so don't presume they must always look how they do in those photos they choose to show you.
If you see someone walk into a disabled toilet, don't make sarky comments about how it's only for people in wheelchairs. Many hidden disabilities give people stomach issues that mean they can't wait for normal toilets.

Most of all, don't presume you know more about someone than you actually do, just from their outward appearance. Try to have some understanding and empathy for others and accept that there are many illnesses that aren't immediately obvious. Chronic illness sufferers have enough to cope with on a daily basis without others making them feel even worse with unfounded accusations and assumptions.
Be kind to others and cherish your good health, as believe me, it can be taken from you in a heartbeat.  

How to stay positive on bad days.

How to cope with the bad days? 

I've just struggled to have a bath. I'm feeling exhausted, weak, nauseous and light headed. I have weird tingling feelings in my arms and a muscle by my ribs having a twitching frenzy. I cannot stand to be dirty, so force myself to have a bath, but when i'm getting breathless and wiped out just washing, I know it's a bad day.
I'm used to these days. I've had more than I care to remember. I've had much better days but also much worse days too, so I need to remind myself of that. 

I used to be bed bound for weeks on end and can remember all too clearly just how poorly I can feel. So I need to try to stay positive and get through this difficult day. BUT that's not always easy. I know how fortunate I am. I have friends who suffer with this illness far worse than me. I never let myself forget how they suffer and just how much more awful it could be. I also know how much better it could be.

I've missed yet another family get together today, for my auntie's birthday. I just couldn't do it. I didn't even have the energy to get ready, let alone sit in a restaurant, talking to people for a few hours. Talking is one of the things that utterly drains me. The pain i'm in today too would have made it all just too much to go through.
My wrists seem to be in a flare up and hurt and ache so much. It feels like a constant pressure of pain. I'm having to type this in sections as it's hurting to type, but I need to get these feelings and thoughts out. I need to voice it to someone, just so I can try to get rid and get on with the rest of the day. 

I class myself as a positive person. After many very bad years, mentally and physically, I feel like i'm much stronger mentally. I don't let myself focus too much on the crap. I don't allow myself to get too down. I try not to feel sorry for myself and always remind myself of how lucky I am.  I take pleasure in the little things now. I've readjusted what I expect of myself and my life. I know what I can do is limited and I try to just enjoy what I can do and get through the payback I experience every time I do anything remotely normal. I concentrate on hobbies and doing little things that make me happy. I concentrate on all the good things I have, like my wonderful family.

It's just when I have days like this.. I struggle a little. I know I should allow myself to have a wobble occasionally. I'm not a robot and i'm far from perfect. I know there are many worse off than me, but I also know that what i'm feeling is real. The pain is real. The worry is real. I am allowed to feel fed up and annoyed that a day is going by without me making the most of it. I can't do what i want to do. My house is a mess. I don't have the energy to tidy. I can't paint furniture that I want to. I can't redecorate my tiny little hallway like I want to. I can't take my dog for a proper walk. I can't go out.
That allows me to feel a bit pissed off I suppose. BUT i don't want it to get the better of me. So I just need to let it be what it is and hope that tomorrow is better. Que Sera. 

Right, back to the sofa for me. Let's hope the football coming up is a good match to focus on and my doggie is up for more cuddles. 

The fear of benefit cuts.

After seeing the One month before heartbreak blog I felt I needed to share my fears and worries and help to raise awareness of just how essential these benefits are to our lives and wellbeing. 

From a personal point of view, without benefits I couldn't survive. I would be homeless, could not feed or clothe myself and would end up in a worse state of illness than i already am. 

I suffer with ME (Myalgic Encephalopathy) and I use the word suffer because it is one long suffering. I was diagnosed nearly 9 years ago and i have gone from a healthy, active, busy young woman to a woman that cannot work, has no social life, barely leaves the house and one who's body is controlled totally by illness. 

The daily, non stop symptoms of extreme exhaustion, muscle pain, joint pain, nausea, dizzyness, weakness, IBS, brainfog, loss of short term memory and low concentration, sound and light sensitivity, headaches, sleep problems, anxiety, depression etc... are difficult enough to cope with without the stigma attached to the illness by ignorant people who disbelieve or belittle what ME sufferers go through. 

As if this isn't enough to cope with there is now added fear and stress caused by the governments plans to scrap DLA and Incapacity benefit to try to encourage people back to work. 
This is all well and good for those who cheat the system and those who avoid work, but what about how badly it will affect those like me who are severely affected by illness and disability? 
The problem is the government really only care about the figures looking good and will always put profit over people's lives. 


The fear these cuts are causing me is constant. They are making me iller with the constant worry and stress of what i may have to face. 
 I'm already waiting for a tribunal date as i've had to appeal against the decision to cut my DLA care rate from middle rate to nothing. This fight has now been going on since April 2010 and I am still waiting to see if i get back the money I am entitled to. 
 The whole system exhausts me. Most days i can barely keep my eyes open, yet I have to continue to fight for a small amount of money just so i can survive. 

Yet this last year of fighting for DLA (care componant) may all be wasted if the government go ahead with plans to cut DLA. To some it may seem like an exaggeration, but without benefits, I literally cannot survive.
 I live on my own and without disability benefits I could not afford to keep my housing association property. I could not afford to look after myself. I would lose everything. 

The biggest fear i have is that changing these benefits to focus on getting people to work rather than supporting those most in need, will end up with those most vulnerable living in poverty or resorting to suicide. Some people will just not be able to survive. Is this really what this country has become? For those most in need of help to be forced into work or lose everything?

If i can't work how am i expected to go to numerous medical appointments to be judged by someone that has no idea about ME and who is merely following a list of things to tick off. Applying for DLA means a huge form full of very personal questions already so these appointments seem to be unnecessary.  Anyone who has been to a benefits medical appointment will know just how horrible it is. You are treated as if you are lying and misbelieved. It's almost as if we are all guilty until proven innocent. 
If after these appointments that stranger has decided I can work, then I get put on JSA. That then involves living on about £60 a week and going to sign on every two weeks. 
  If you don't turn up to these appointments on the day they say you risk losing your benefit. If I am barely well enough to get off the settee all day, how am I going to be able to cope with going to sign on every two weeks? 


Then the worry is who on earth would employ someone who would maybe last the morning before having to go home utterly exhausted and nauseous, and then having to phone in sick for the rest of the week as the mornings work has put you back in bed for weeks? 


Maybe the government need to concentrate on getting those who are able and healthy enough back into work. If there arn't enough jobs for those on JSA then where are these jobs meant to come from for those on disability benefit? 


Due to my brainfog and inability to concentrate for long, I can't claim to understand everything that is being threatened and trying to read through all the in depth information is just too much for me, but what i do know is that the disabled are being treated as an easy target and we somehow need to make our voices heard. 
 We can't protest and go on marches like students can. We don't have the ability to fight like healthy people, so this blogging idea is important. 


I'm scared enough about how my life is going and about how vulnerable I am but this benefit cuts situation is terrifying me and makes me feel like there is nothing I can do about it.