Thursday, 6 April 2017

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.  


  1. Absolutely beautifully written! I'm sorry you have to cope with all this, you do it with such style and grace, not to mention steely nerve. You're an inspiring kick ass woman who is making one hell of a mark! xxx

    1. Bless you, thank you Jess. I don't feel very ass kicking but it's nice that others see that! xxx

  2. Oh Kerryn, I'm trying to take on board what you've said.Having reached the age of 75, a recovering alcoholic, former Smoker I seem to have somehow escaped the ravages that may be expected. Life just isn't fair and I wish I could say something which might ease your suffering. You are an inspiration to all of us, what you have achieved in the Home Fires Campaign is nothing short of heroic. I wish that there was something I could say that could ease your pain. One day I hope that we might meet and I can say thank you in person, until then please try to stay as positive as possible and know that our best wishes and thoughts are for you. I really, really hope that better times are on the way for you. Love, Jim.xxxxx.

    1. awww thank you Jim. What a lovely message.
      I certainly wouldn't wish illness on anyone (well one or two people maybe lol).
      Kind words and friendships really help me. It can feel very alone when you live alone and are ill so often. I'm lucky to have some loving family and caring friends though, as well as my beautiful little doggie.
      The campaign has meant a lot to me, as i'm not able to achieve very much due to the restrictive life I lead, but this was something that social media allowed me to do. It's brought lots of lovely people together and then the books, so it's been worth all the time and effort.
      I hope we get to meet one day too. I'm hoping for a big get together at a book signing!
      Love and thanks back xxx