Hey Everyone,
I hope you are all doing well.
Today I wanted to discuss something that is a much talked about subject. We all know that words we say to others can really affect them in many ways and it is no different for chronic illness sufferers... we are still human (or bionic if you're like me and have a pacemaker hehe) and we still get hurt by words and ways people treat us.
Here's the thing, I spend A LOT of time at various hospital appointments to the point where I have at least one almost every week for months straight. It is exhausting mentally, physically and emotionally - especially when you don't see much or any improvement in health or quality of life. I go to these appointments and tests to try improve my quality of life and to be able to try get to a point where I can live some what of a 'normal' life. That being said, in trying to improve my health and getting a life, I spend my life back and forth to doctors appointments and having to have a ton of days off work (which makes me terrified to lose
my job if they get that fed up with the amount of time i require off) and not having a life! Now if I was seeing major improvements and things coming out of all these tests then it would be so bad, but, when things for the most part don't improve and nothing changes from all the drug trials and appointments and tests..... how would you feel? Would you feel like you are making the most of your life or wasting your life? I know it only takes that one test, or one doctor or one medication that could be 'the one' that makes my health better to improve my life but how many years am I supposed to keep going to appointment after appointment in the hope of improving my quality of life before I give up and just make the best of what I can or before I accept that doctors just don't have anything they can do to help?
I always get anxious about asking for days off every 5 minutes for more doctors appointments as I don't want to lose my job. Sure it is not the job I've dreamt about and probably won't do it for the rest of my life but it still really bothers me for a few reasons. Firstly, holding down a job is my way of living a 'normal' life like healthier people. Secondly, it is a way to distract my mind from everything going on with my health as if I were to sit at home everyday I would go insane and just become depressed because of it and let my health completely ruin my life. Thirdly, like everyone, I need the money to be able to live and do things I want to. Everyone always tells me I need to think of my health and what my body needs more and that it is more important than a job, and whilst that is true in my mind as a chronic illness sufferer with illnesses I know I have for life and illnesses doctors just don't know enough about and realistically don't know what to do so they palm you off with tests and onto other doctors who do the same. I know that doctors appointments aren't going to end. It's not like an infection or an illness where you go to a few appointments have some antibiotics or medication and bish bash bosh the appointments are over and you can go back to normal. But... imagine having to do that for mostly likely the rest of your life. Imagine constantly having to let people down because a last minute appointment has come through. Having a full time job which you agreed you could work and then needing to do a 3 or 4 days week each week because of appointments.... are you seriously going to think about your health coming first each time OR are you going to get stressed about trying to keep a job because you know this illness for life and there are always going to be more appointments and which eventually is most likely to cause a problem with your manager because of the amount of time you need off and what they need for their business. Although they can't legally they can't sack you due to your health, they can make your life difficult until they manage to push you out by you quitting in which case your life is made more difficult and ends up in a horrible cycle which means more stress and in turn means your health is affected and deteriorates because of it making you more unwell that you were to start with.
If I were to lose my job because my health, not only would I suffer financially but more so emotionally and mentally because to me that is about the most normal thing I can do to feel like my health isn't completely taking over my life. So to me, when I get upset about appointments and more tests and more time off work and someone tells me 'well if you don't go to these appointments you won't have a life because you won't get better' I get so many emotions rushing through me that causes me to then snap. I get where they're coming from but it makes me so frustrated and sad and mad because all it feels like to me is I am spending my life going to drs to make my life better when in actually fact I am having no life because that is all I am doing with it. Can you see where I am coming from? Like how long do I keep going in the hope that something will help when in the 5 years this has been going on barely anything has been done with the test results and if it has, the majority of what has been tried hasn't worked and sometimes even caused worse symptoms because of side affects. It is easy to say to someone it only takes the one tablet or one doctor but when it is an on going thing and next to nothing is helping it isn't so easy to keep doing.
Everywhere I go or a lot of people I speak to who complain about life or health and how something is affecting it can really get to me at times. For example, I over heard a conversation someone had earlier today about their broken arm (which was operated on) and how having to go back and forth to the fracture clinic for the next 3 months is so frustrating and so inconvenient with work and life... now imagine having to go back and forth to hospitals and being prodded and poked for the rest of your life with the majority of those appointments really not doing much. It really frustrates me and I know we don't appreciate things or understand things until we experience them or lose them but I just don't understand why people feel the need to get wound up by my mindset or mood or nasty when I get upset by things life the millions of appointments. I'm 24 years old, I should be going out in the evenings after work and having the weekends to have fun but instead I am just schlepping from one appointment to the other and then being too exhausted for anything and in turn having no life.
Sorry for this rant but it is something that has been on my mind for so long. Don't judge someone or be nasty to them or tell them they are being stupid when you haven't walked in their shoes. And that goes for anything, not just when it comes to chronic illnesses. Just like when people say people who commit suicide are selfish.... no.... they are not. They are in such a low place and state of mind and are dealing with an illness at the end of the day. You
don't understand and may not agree with the thought process they are having as an outsider because you haven't experience it, you obviously haven't been in a place where you mentally, physically and emotionally just can't cope any more and can't see things ever getting better no matter what you try or who you have around you. You wouldn't tell a terminally ill cancer patient who decides against treatment so they can enjoy the life they have left to the best they can without the constant hospital trips and medication side affects. So why is it any different for other illnesses? Why can't people accept the sufferers feelings and thought process and frustrating without saying they are being stupid as it only takes one doctor or medicine even if it is 10 years down the line?
Please just understand that all of these physical problems cause so many more mental and emotional issues of which you can't see and can't truly understand unless you have gone through the same or similar.
I'd love to hear your thoughts on this subject so please leave them in the comments below or on any of my social media (click on the word for the place you want to magically appear to join the conversation - Facebook - Instagram - Twitter)
That's all for now .... Have a wonderful day, evening or sleep where ever in the world you are (and whatever time is is obviously).
Stay Stron
<3
Hey Everyone
How are you all doing?
The last few months have been exceptionally hard for me. My body has really just given up on me and landed me in hospital twice in one weekend by ambulance (even got the sirens going). It has really made me stop and think about what is and isn't important in life and how un-be-lieve-ably lucky I am to have the most amazing and supportive family. So many times recently I have wanted to just give up on life and give up fighting. I have hated on life so much it is unreal. I have even turned round to my parents and said I can't do it anymore. The only reason I have done and still am fighting is for my parents, brother & sister. It sounds so extreme and sounds depressing or weak or harsh to say but it is the truth. I've always said that I am honest on here and use this as a venting place so that is what I am doing.
People always say that if you have a roof over your head and good health then life is good and you're lucky but the truth is having someone or people there for you through thick and thin is better than any physical item. I know that my family are there for me no matter what. We all say things we don't mean to each other and we all yell and call each other names but at the end of the day we love each other. I feel incredibly lucky to have the support system that I do and to have people there for me because if I didn't, I honestly don't know what I would do or what I would fight for in life....
We all love our gadgets and love to spend our money on the newest make up or fashion trend and that's great.. but when push comes to shove, is that new lipstick going to help you through a tough time or help give you advice or the strength you need to push through when you're all out of strength. It really is true when they say money can't buy happiness. You can have all the money in the world but that doesn't mean you are going to get the support you need to get through the things money can't change. Now, I may not be happy currently or even enjoying life, I may do a bit of retail therapy and feel better momentarily but what truly keeps me going is my family. They give me strength when I don't have any left. They give me something that is worth fighting for. The keep me calm when all I feel like I am going to do is go into complete overdrive, panic scream mode!
Sorry if this is upsetting to some, but I want to be honest... for myself and others. I told my parents recently that I wish the ambulance man didn't help me and basically let me die. Quite honestly, it is how I feel lately since my health has really spiralled to a rock bottom I didn't know existed. I've faced some of the hardest things and felt the worst I have before and can't see the ending or white light to this all. I can't see my health ever improving letting me lead my life in a way I wish to do it rather than being stuck in bed. Now, I am saying this because, I always read or hear people talking about how people who kill themselves or don't want to live their life are selfish and it makes me mad. I know when I said that to my parents, I wasn't saying it from a selfish place I was saying it from a place where my head isn't thinking straight and depressed some may say. Both of which isn't a selfish thing. So then, when I think about those people who don't have an amazing family or support system around them, it makes me realise I have more than I think in life to live for and my health is just a big obstacle where adjustments will need making.
I wish I could be there for everyone out there who doesn't have someone... who is dealing with whatever it is they are dealing with alone. I don't know that I'd be able to do it. So, I want to start this post off and have people allow and support and help one another. Show people that they do have someone who is there for them and willing to listen and support them through their tough time be it health, school, work or just life! You are NOT alone. I would love for you to send me messages on Facebook, Twitter, on here or on Youtube and we can start a support group or anyone wherever they are in the world. (might even give you a laugh whilst you're on my youtube :)). Together we can get each other through it.
I feel incredibly lucky and grateful to have my amazing amazing parents and siblings. I may not have good health, or live in the country of my dreams, or have the job I always dreamed of as a little girl.... but I have them and I love them so much and would do anything for them - even if that means fighting for a life that right now I am not so keen on... but who knows - the future hasn't been written yet and what we do today creates tomorrow and the rest of our lives.
Sorry for the rambley post and sorry there isn't even all that much structure, I just felt the need to vent and remind myself how freaking lucky I am to have what I have. In sickness and in health..... that applies for marriages, friendships, when you have kids.... anything...
And if someone can't or won't take you when you are at your worst or when you are sick.... they sure as hell don't deserve to be around when you are happy or doing well!! Support works all ways and can be the most powerful thing in life... even more so than any medication.
Lets support each other.... and together we shall conquer the world!!
Stay Strong
<3
I always get anxious about asking for days off every 5 minutes for more doctors appointments as I don't want to lose my job. Sure it is not the job I've dreamt about and probably won't do it for the rest of my life but it still really bothers me for a few reasons. Firstly, holding down a job is my way of living a 'normal' life like healthier people. Secondly, it is a way to distract my mind from everything going on with my health as if I were to sit at home everyday I would go insane and just become depressed because of it and let my health completely ruin my life. Thirdly, like everyone, I need the money to be able to live and do things I want to. Everyone always tells me I need to think of my health and what my body needs more and that it is more important than a job, and whilst that is true in my mind as a chronic illness sufferer with illnesses I know I have for life and illnesses doctors just don't know enough about and realistically don't know what to do so they palm you off with tests and onto other doctors who do the same. I know that doctors appointments aren't going to end. It's not like an infection or an illness where you go to a few appointments have some antibiotics or medication and bish bash bosh the appointments are over and you can go back to normal. But... imagine having to do that for mostly likely the rest of your life. Imagine constantly having to let people down because a last minute appointment has come through. Having a full time job which you agreed you could work and then needing to do a 3 or 4 days week each week because of appointments.... are you seriously going to think about your health coming first each time OR are you going to get stressed about trying to keep a job because you know this illness for life and there are always going to be more appointments and which eventually is most likely to cause a problem with your manager because of the amount of time you need off and what they need for their business. Although they can't legally they can't sack you due to your health, they can make your life difficult until they manage to push you out by you quitting in which case your life is made more difficult and ends up in a horrible cycle which means more stress and in turn means your health is affected and deteriorates because of it making you more unwell that you were to start with.
