In this blog I want to focus on goals, broken visions and how to move forward from this. I believe anyone can relate to this in any aspect of life, but this will have a slight sway towards illness. As anyone who has read my blogs before the last reason I write them is for sympathy; instead they are to raise awareness and since March 26th is Epilepsy Awareness Day this is as good a reason as any. Also hopefully raising some awareness of bleeding disorders too. Plus if I can help one other person who has gone through a struggle by sharing my story, which is also why I've added some pictures, then it will make the last couple of months all worth it. (It also helps me by writing about it.)
Before I fully get into the blog someone sent this link to me and I feel it sums me up quite nicely:
http://thoughtcatalog.com/kim-quindlen/2016/12/10-things-people-dont-realize-youre-doing-because-you-have-an-invisible-illness/
If you don’t want to read it all, I’ll pick out the key points that give an insight into me:
Prior to the new year I had already started to become more frustrated with my epilepsy and the side effects causing me to lose a bit of “normality”. I was on two medications for my epilepsy, although being tweaked dosages these medications had been the same for about a year. My memory had started to get worse and worse. Struggling to remember people’s names and forgetting words for things as simple as table etc. I was getting really frustrated by it but tried to cover it by laughing it off which in turn was making myself worse.
I saw my neurologist a few days after the seizure mentioned above and as my seizures hadn’t completely stopped, one of my tablets dose got doubled. Within a few days I was vomiting and struggling to keep medication down. Therefore I got admitted to hospital; another goal to stay out of hospital gone. Here is an example of making misconceptions on someone... I’m a 25 year old woman and was lying on a trolley in A and E on a Friday night vomiting and a bit post ictal (post seizure) – I obviously looked like I was drunk. I remember getting a bit distressed by the looks I was getting from one family in particular for at least an hour or two. The doctor came over and started talking about my epilepsy and the issues I was having, loud enough for everyone around to hear! As soon as the doctor leaves, the family came over and offered me a blanket (that they had been hoarding). Don’t judge people before you know what is really going on.
I ended up on a ward and within the second day I had a seizure and fell out of bed, giving myself another cracker of a black eye! As a result, I slept with a mattress next to my bed; another goal not to look different gone. I’m not going into too much detail about this admission but a few seizures later I was able to go home after a week and a half. Next goal set, remain out of hospital and get back to work and normality.
Before I fully get into the blog someone sent this link to me and I feel it sums me up quite nicely:
http://thoughtcatalog.com/kim-quindlen/2016/12/10-things-people-dont-realize-youre-doing-because-you-have-an-invisible-illness/
If you don’t want to read it all, I’ll pick out the key points that give an insight into me:
- Learning how to lean on others is still quite a challenge for you, it’s actually quite difficult for you to occasionally let someone else take care of you
- Doing the last thing people would ever expect you to do, to not let it affect the quality of your life or to turn you into a passive person
- It often makes you feel different and isolated enough as it is, so you do everything in your power to convince everyone that you’re fine
- Becoming more passionate about your own dreams
Prior to the new year I had already started to become more frustrated with my epilepsy and the side effects causing me to lose a bit of “normality”. I was on two medications for my epilepsy, although being tweaked dosages these medications had been the same for about a year. My memory had started to get worse and worse. Struggling to remember people’s names and forgetting words for things as simple as table etc. I was getting really frustrated by it but tried to cover it by laughing it off which in turn was making myself worse.
I saw my neurologist a few days after the seizure mentioned above and as my seizures hadn’t completely stopped, one of my tablets dose got doubled. Within a few days I was vomiting and struggling to keep medication down. Therefore I got admitted to hospital; another goal to stay out of hospital gone. Here is an example of making misconceptions on someone... I’m a 25 year old woman and was lying on a trolley in A and E on a Friday night vomiting and a bit post ictal (post seizure) – I obviously looked like I was drunk. I remember getting a bit distressed by the looks I was getting from one family in particular for at least an hour or two. The doctor came over and started talking about my epilepsy and the issues I was having, loud enough for everyone around to hear! As soon as the doctor leaves, the family came over and offered me a blanket (that they had been hoarding). Don’t judge people before you know what is really going on.
I ended up on a ward and within the second day I had a seizure and fell out of bed, giving myself another cracker of a black eye! As a result, I slept with a mattress next to my bed; another goal not to look different gone. I’m not going into too much detail about this admission but a few seizures later I was able to go home after a week and a half. Next goal set, remain out of hospital and get back to work and normality.
This is something I struggle to admit, post this admission I felt really low and isolated. I was surrounded by people who cared but didn’t want to see anyone. People that know me know I normally hate being on my own so this is complete opposite to normal. I wasn’t sure if it was because I felt defeated, that I felt I had broken my goals and ended up in hospital in January. Perhaps I couldn’t see the light at the end of the tunnel. To this day, I still don’t know why but I felt if I got back into my normal routine and the things I enjoy then things would change. So for me back to work, playing netball and seeing friends were the things I knew would pick me up.
Back to work for a week and seeing people started to pick me up, but something in the back of my head made me feel I still wasn’t back to my normal self. I had started a new tablet so I put it down to that. One of the biggest things I enjoy is playing netball so I went back to play two weeks after I came out of hospital. I knew it would bring me enjoyment, although my eye still wasn’t 100% recovered after my black eye. I played and got a really innocuous head injury. I thought nothing of it, but later the next day, I started to get a bit of an egg. Even with my bleeding condition I thought it was a bit excessive. I had an appointment at the eye clinic and they sent me straight to A and E. I got sent to my haematology centre who were ready and waiting for me for what was just meant to be an overnight observation and platelet transfusion. Other than feeling a bit sick I thought it was a bit excessive, on a trolley in A and E majors I was more concerned about the nurse who was cannulating me getting blood all over my favourite trainers than anything else! I knew occasional trips to hospital are a part of my life so I didn’t feel too disheartened as I thought I would be in and out.
However that one evening led to a month in hospital. The bleeding in my head and face carried on and completely shook my epilepsy; they don’t go well together at the best of times. To be honest, I have very hazy memories of some of the time in hospital and on all counts I wasn’t really with it. I remember feeling drugged in some of the hazy memories I do have, especially of the first few weeks. Hearing now that family and friends that have known me all my life were coming away upset seeing me the way I was is now really hard to hear. I’m under two different specialist hospitals for the different conditions and luckily they worked well together to pump me with the drugs to help stop the seizures. On some days, I was having 3 or 4 seizures a day which in nothing like my epilepsy normally is and with each seizure the time it was taking to recover was longer.
Back to work for a week and seeing people started to pick me up, but something in the back of my head made me feel I still wasn’t back to my normal self. I had started a new tablet so I put it down to that. One of the biggest things I enjoy is playing netball so I went back to play two weeks after I came out of hospital. I knew it would bring me enjoyment, although my eye still wasn’t 100% recovered after my black eye. I played and got a really innocuous head injury. I thought nothing of it, but later the next day, I started to get a bit of an egg. Even with my bleeding condition I thought it was a bit excessive. I had an appointment at the eye clinic and they sent me straight to A and E. I got sent to my haematology centre who were ready and waiting for me for what was just meant to be an overnight observation and platelet transfusion. Other than feeling a bit sick I thought it was a bit excessive, on a trolley in A and E majors I was more concerned about the nurse who was cannulating me getting blood all over my favourite trainers than anything else! I knew occasional trips to hospital are a part of my life so I didn’t feel too disheartened as I thought I would be in and out.
However that one evening led to a month in hospital. The bleeding in my head and face carried on and completely shook my epilepsy; they don’t go well together at the best of times. To be honest, I have very hazy memories of some of the time in hospital and on all counts I wasn’t really with it. I remember feeling drugged in some of the hazy memories I do have, especially of the first few weeks. Hearing now that family and friends that have known me all my life were coming away upset seeing me the way I was is now really hard to hear. I’m under two different specialist hospitals for the different conditions and luckily they worked well together to pump me with the drugs to help stop the seizures. On some days, I was having 3 or 4 seizures a day which in nothing like my epilepsy normally is and with each seizure the time it was taking to recover was longer.
The month in hospital has led to a few other issues which are ongoing but I can definitely say my life has changed from this admission and I am just grateful to be out of hospital. I have come away on four different medications to stabilise my epilepsy. I have to stop playing any contact (or non-contact in netball’s case) sports. I will admit I had some really down days in hospital and I’m truly thankful to those that have helped me through those and got me to where I am now. The one thing I have come away from this is I have learnt that I need to not set myself such high goals and sometimes unreachable as all I do is get disheartened when I don’t meet them. Great quote that I’ve read “Don’t wait until you’ve reached your goal to be proud of yourself, be proud of every step you take forward.”
I feel this can be taken away by everyone that don’t beat yourself up if you don’t meet your goals, set yourself reachable ones and just be grateful for every step you take forwards. Especially with illness it’s unpredictable and sometimes there just isn’t anything you can do about it but keep your mind right and head up. My goal now is to not let the uncertainty of my epilepsy worry me.
I have always had to thank those who donate blood, but in 2017 alone I have probably had over 20 platelet transfusions, so thank you to everyone who does donate and if you can but don’t maybe that can be your one achievable goal for the year? It makes a massive difference to those who receive the transfusions. (which is also why I’ve added the pictures)
I feel this can be taken away by everyone that don’t beat yourself up if you don’t meet your goals, set yourself reachable ones and just be grateful for every step you take forwards. Especially with illness it’s unpredictable and sometimes there just isn’t anything you can do about it but keep your mind right and head up. My goal now is to not let the uncertainty of my epilepsy worry me.
I have always had to thank those who donate blood, but in 2017 alone I have probably had over 20 platelet transfusions, so thank you to everyone who does donate and if you can but don’t maybe that can be your one achievable goal for the year? It makes a massive difference to those who receive the transfusions. (which is also why I’ve added the pictures)