I am in a bit of a ranting mood today…
I have cut a lot of people out of my life. These people have no right to be apart of my life in any way, hence why they’ve been cut from it.
People I had known for years, I have cut out of my life. Why?
When I became ill it all started off with me being sick almost every single day, and genuinely not having enough energy to even lift my head up. I genuinely thought it was stress so shrugged my shoulders and put it down to that…
I was working at the time and had to call in sick, many times I was told I had to come in so would drag myself to work feeling like shit, having to get off shop floor in the middle of serving customers to be sick.
This is when the talking started….
‘She’s such a drama queen!’
‘She’s faking it!’
‘Such an attention seeker’
‘She is so lazy that she makes it up that she isn’t well to get out of stuff’
‘She’s a liar!’
‘She skiving, probably just hungover from the night before’
Now anyone that knows me knows that I do not call in sick or give up unless I really have too. I became so unwell that I was throwing up at least once or twice every single day, I had bad headaches, I got hot and cold, I would shake uncontrollably, I couldn’t function and I had no energy, no motivation, no anything…
Life was dull and I became very depressed. I was crying all the time. Crying constantly…I was so exhausted that if someone asked if I was okay I would just break down and cry. I have never been someone to cry loads but I genuinely felt like I had no control over my body, I was confused to hell about what was going on and I had people who was speaking about me to others, saying shitty comments. How did I know this? A lot of the time I would hear them myself, others would tell me they had said something but to be honest I never trust anyone because even people who claim they are the best of friends slag each other off. Not really something I have ever got, to be honest.
After my diagnosis, people were still talking saying I was making it up. Of all the illnesses that I could make up and they think I would sink that low and pretend I have failing organs?
The truth is I would love to be able to do what someone of my age does. I want to work, I want to see my friends, I want to chat to others, socialise, I want to go partying, I want to go on holidays… I just want to enjoy life!
Life isn’t all that enjoyable, in fact its the opposite and only another kidney patient will understand the challenges we face every single day and that we do really count our blessing every time we wake up…There is a fear that one day you won’t wake up. I am not exaggerating, its the truth. Kidney Patients can die, there is not enough awareness about for such a terrible and terrifying illness.
People have lack of knowledge of Chronic Kidney Disease and I don’t blame them I just think there isn’t enough awareness, adverts to make people aware that this is very serious, it can kill and there is no cure.
Imagine waking up every morning and looking in the mirror and congratulating yourself that you’re still alive. That’s just how it is.
To this day no one knows what caused my CKD, but me and my family have our guesses and it wouldn’t surprise me if we were correct.
I have some absolutely amazing people in my life and after many failing attempts of trying to become a member of support groups, I gave up and made my own and it was the best thing I ever did. It gives me purpose, meaning and a reason to be positive. I can help others, just by a friendly face, someone to talk to. There is nothing worse than feeling alone and it isn’t something I am prepared to be.
I get angry, I get upset, depressed and my anxiety is through the roof at times. I get insomnia and can’t sleep and constantly have restless leg syndrome. I can’t breathe properly, I feel sick all the time, I have no energy ever and the littlest tasks can wear me out completely to the point where I am exhausted.
The truth is my life is on hold…You get told ‘Yeah you can lead a normal life on dialysis’ I am not being funny but how on earth can you consider dialysis as part of a normal life? Its so very far from especially for those who get the symptoms like me. I have lost so much in just under a year…I lost my job, my house, my independence, my confidence…My life.
Sometimes it feels like I am only existing because this isn’t living…The fact is if dialysis didn’t exist where would I be? Dead.
And that ladies and gents is as blunt and black and white as it can get. Without dialysis I would die. I’ve been told exactly how long I would last without dialysis…1 week…Yes a week…Apparently depending the severity of your Kidney’s you organs will all shut down one by one until your body slowly goes into a coma and you die…Sounds shit, doesn’t it? But that my friends, that is reality…that is my reality.
I sometimes don’t know how I get the strength to put on my smiley face and continue like CKD doesn’t get me down, now I would be a liar if I denied that Kidney Disease gets me down. It does get me down but I have my up days and my down days. Feeling like you continuously have the flu is shattering alone.
I don’t see my friends very often, because I am genuinely too ill to socialise sometimes…I have lost the confidence to talk on the phone and those of you who know me would know that would normally be impossible, as I loved to talk but I hate it. I struggle with everyday tasks, tasks that you would do without thinking….Showering, walking, going upstairs, sleeping…You know the tasks that take no thought…I genuinely have to think what I am doing…
I can’t lift heavy objects, doctors orders because my catheter could cause a tear or a hernia…Not what you want added to your already long list of what you can and can’t do. I am not allowed to bath, because my exit catheter area could get infected, I shower every other day because I am not allowed to change my dressing too frequently…The little things I have to remember. I wear a piece of fabric round my middle constantly, its a pocket for my catheter.
Day in day out life can be hell but I always try to think positively in whatever situation I am in…I think there are people who are worse off then me, or I need to stay strong to help others going through similar things to me to stay strong…
I can’t say that I have won because within reason unfortunately its 1-0 to CKD, because my kidney function is no more. But I will fight back and continue to stay strong, knowing that some day I will see the light at the end of the tunnel, this tunnel is just a bloody long one lol.
I have had hundreds of people send me the most amazing comments, and I really am blessed to have such amazing people in my life. I am blessed to have some amazing friends, close family and my partner. A partner who I can honestly say is my complete rock, and without her I don’t know where I would be today. Hannah was a gift from a special place. Never have I been with someone so loving, caring and beautiful inside and out. Without her I don’t think a smile would be possible. If by any reason me and Hannah were to end our relationship than I genuinely would try what I can to keep her as my friend. Hannah is my best friend, my soulmate and I love her so very much.
I am not going to rattle anyone’s cage by mentioning who’s friendship means the most to me, but these people will know who they are.
Don’t ever judge someone without knowing the facts first…To you I might seem lazy but in fact I am too tired to move. I am fighting for my life every single day and I don’t know how else you can tell people of the seriousness.
Another thing people think dialysis and transplants are cures….NEWSFLASH. There is no cure for Kidney Disease.
Dialysis works about what a kidney would function at 30%, so its only just doing its job. Transplants can last anywhere between 0-20+ years, however the most common time that a transplanted kidney functions for is around 12-18 months….
I will be in and out of hospital, on medications, having operations, going through agony physically and mentally for the rest of my life. I wouldn’t wish it on my worst enemy although a day in my shoes might open their eyes a little bit on what us kidney patients deal with on a daily basis.
People who have an amazing life and no worries in the world sometimes neglect their bodies in careless ways, this does actually irritate me. This does not include people who suffer with mental health, as different people have different ways of dealing with this. I am talking about the people who do stuff to fit in, to look good, and for attention…for no reason what so ever, they put their lives and health on the line. People really don’t realise the damage they do to their bodies.
Kidney Patient’s fight to save their remaining organs, for their life and their are so many people who don’t give a thought to what they are doing to their bodies. However, when I was young I did what wanted to do, I didn’t think about life and how it could get ripped away from me, it never crossed my mind and to be honest within reason it was nice having such a carefree life…Things changed when I got my diagnosis, all the sudden I looked at life completely different to what I ever had before. I realised how precious life is and how quickly it could be snatched away.
I could go on and on about all of this because I am so passionate in the things that I say…
People should really stop judging others, especially when you have no idea of their story and what they are or have been going through.
If you would like to be apart of my CKD support group, then please come and join us at www.facebook.com/groups/CKDSupport