Cat R.

@risingfromtheillness | contributor
Sharing experiences, asking questions, supporting others and finding support.
Cat R.

My Medication Routine for Behcet's Disease Rules My Life

I hate the thought of my illness ruling my life but the truth is: in some ways it does and always will. I always have to plan ahead with everything I want to do and I miss out on a lot of things because of how it affects my body. But the one thing that rules my life more than anything is my medication! It’s something that I don’t really talk about as I guess it’s just a given that I have to take medication, but it’s one thing that really gets to me! Why? Because it feels like all I ever do is take some form of medication! My whole day every day is controlled by when I need to take my medication and whether I have to eat or can’t eat with it, etc. I did a little experiment and filmed myself taking my meds for a whole day. I ended up with 10 different videos!  A lot of the time, I’m taking multiple medications within this video as well! This includes three different meds for my Behçet’s disease, four pain meds, nerve meds, stomach protection, meds for anxiety and depression, three different types of laxatives, mouthwash to protect my throat from closing as I get older and vitamins/supplements. A lot of these are taken more than once throughout the day. I did this to give people an insight into a typical day for me. No matter how hard I try to prevent my illness from ruling my life, I can’t get away from the fact that I have to follow my medication routine… every day! Sometimes I get so fed up and I get angry over the fact that I can’t just go to bed if I’m tired because I have a whole routine before I can even think about going to sleep. It’s the same when I wake up — I’d love to be able to get up without having to take a handful of meds before I even start my day. The thing that annoys me the most is that there’s no end… this is potentially and very likely what my life will look like from now on. I know that they’re doing good and without them I’d be in a very bad way, but it doesn’t mean I can’t and don’t get frustrated with it — this isn’t “normal” and I do struggle. I know how important it is to take them and I’ve got into a really good routine, but it is hard! On top of that, I have three days of treatment every six weeks in hospital, which also fits into my medication/treatment schedule. Although I hate to admit it, my life really is ruled by my illness/medication. So there you go — I wanted to give everyone a little more of an insight into my life living with a very rare disease and how it really gets me down even when I try my best to not let it affect my spirits. You can find the video on Instagram or TikTok @risingfromtheillness.

Cat R.

My Medication Routine for Behcet's Disease Rules My Life

I hate the thought of my illness ruling my life but the truth is: in some ways it does and always will. I always have to plan ahead with everything I want to do and I miss out on a lot of things because of how it affects my body. But the one thing that rules my life more than anything is my medication! It’s something that I don’t really talk about as I guess it’s just a given that I have to take medication, but it’s one thing that really gets to me! Why? Because it feels like all I ever do is take some form of medication! My whole day every day is controlled by when I need to take my medication and whether I have to eat or can’t eat with it, etc. I did a little experiment and filmed myself taking my meds for a whole day. I ended up with 10 different videos!  A lot of the time, I’m taking multiple medications within this video as well! This includes three different meds for my Behçet’s disease, four pain meds, nerve meds, stomach protection, meds for anxiety and depression, three different types of laxatives, mouthwash to protect my throat from closing as I get older and vitamins/supplements. A lot of these are taken more than once throughout the day. I did this to give people an insight into a typical day for me. No matter how hard I try to prevent my illness from ruling my life, I can’t get away from the fact that I have to follow my medication routine… every day! Sometimes I get so fed up and I get angry over the fact that I can’t just go to bed if I’m tired because I have a whole routine before I can even think about going to sleep. It’s the same when I wake up — I’d love to be able to get up without having to take a handful of meds before I even start my day. The thing that annoys me the most is that there’s no end… this is potentially and very likely what my life will look like from now on. I know that they’re doing good and without them I’d be in a very bad way, but it doesn’t mean I can’t and don’t get frustrated with it — this isn’t “normal” and I do struggle. I know how important it is to take them and I’ve got into a really good routine, but it is hard! On top of that, I have three days of treatment every six weeks in hospital, which also fits into my medication/treatment schedule. Although I hate to admit it, my life really is ruled by my illness/medication. So there you go — I wanted to give everyone a little more of an insight into my life living with a very rare disease and how it really gets me down even when I try my best to not let it affect my spirits. You can find the video on Instagram or TikTok @risingfromtheillness.

Cat R.

My Medication Routine for Behcet's Disease Rules My Life

I hate the thought of my illness ruling my life but the truth is: in some ways it does and always will. I always have to plan ahead with everything I want to do and I miss out on a lot of things because of how it affects my body. But the one thing that rules my life more than anything is my medication! It’s something that I don’t really talk about as I guess it’s just a given that I have to take medication, but it’s one thing that really gets to me! Why? Because it feels like all I ever do is take some form of medication! My whole day every day is controlled by when I need to take my medication and whether I have to eat or can’t eat with it, etc. I did a little experiment and filmed myself taking my meds for a whole day. I ended up with 10 different videos!  A lot of the time, I’m taking multiple medications within this video as well! This includes three different meds for my Behçet’s disease, four pain meds, nerve meds, stomach protection, meds for anxiety and depression, three different types of laxatives, mouthwash to protect my throat from closing as I get older and vitamins/supplements. A lot of these are taken more than once throughout the day. I did this to give people an insight into a typical day for me. No matter how hard I try to prevent my illness from ruling my life, I can’t get away from the fact that I have to follow my medication routine… every day! Sometimes I get so fed up and I get angry over the fact that I can’t just go to bed if I’m tired because I have a whole routine before I can even think about going to sleep. It’s the same when I wake up — I’d love to be able to get up without having to take a handful of meds before I even start my day. The thing that annoys me the most is that there’s no end… this is potentially and very likely what my life will look like from now on. I know that they’re doing good and without them I’d be in a very bad way, but it doesn’t mean I can’t and don’t get frustrated with it — this isn’t “normal” and I do struggle. I know how important it is to take them and I’ve got into a really good routine, but it is hard! On top of that, I have three days of treatment every six weeks in hospital, which also fits into my medication/treatment schedule. Although I hate to admit it, my life really is ruled by my illness/medication. So there you go — I wanted to give everyone a little more of an insight into my life living with a very rare disease and how it really gets me down even when I try my best to not let it affect my spirits. You can find the video on Instagram or TikTok @risingfromtheillness.

Cat R.

My Medication Routine for Behcet's Disease Rules My Life

I hate the thought of my illness ruling my life but the truth is: in some ways it does and always will. I always have to plan ahead with everything I want to do and I miss out on a lot of things because of how it affects my body. But the one thing that rules my life more than anything is my medication! It’s something that I don’t really talk about as I guess it’s just a given that I have to take medication, but it’s one thing that really gets to me! Why? Because it feels like all I ever do is take some form of medication! My whole day every day is controlled by when I need to take my medication and whether I have to eat or can’t eat with it, etc. I did a little experiment and filmed myself taking my meds for a whole day. I ended up with 10 different videos!  A lot of the time, I’m taking multiple medications within this video as well! This includes three different meds for my Behçet’s disease, four pain meds, nerve meds, stomach protection, meds for anxiety and depression, three different types of laxatives, mouthwash to protect my throat from closing as I get older and vitamins/supplements. A lot of these are taken more than once throughout the day. I did this to give people an insight into a typical day for me. No matter how hard I try to prevent my illness from ruling my life, I can’t get away from the fact that I have to follow my medication routine… every day! Sometimes I get so fed up and I get angry over the fact that I can’t just go to bed if I’m tired because I have a whole routine before I can even think about going to sleep. It’s the same when I wake up — I’d love to be able to get up without having to take a handful of meds before I even start my day. The thing that annoys me the most is that there’s no end… this is potentially and very likely what my life will look like from now on. I know that they’re doing good and without them I’d be in a very bad way, but it doesn’t mean I can’t and don’t get frustrated with it — this isn’t “normal” and I do struggle. I know how important it is to take them and I’ve got into a really good routine, but it is hard! On top of that, I have three days of treatment every six weeks in hospital, which also fits into my medication/treatment schedule. Although I hate to admit it, my life really is ruled by my illness/medication. So there you go — I wanted to give everyone a little more of an insight into my life living with a very rare disease and how it really gets me down even when I try my best to not let it affect my spirits. You can find the video on Instagram or TikTok @risingfromtheillness.

Cat R.

My Medication Routine for Behcet's Disease Rules My Life

I hate the thought of my illness ruling my life but the truth is: in some ways it does and always will. I always have to plan ahead with everything I want to do and I miss out on a lot of things because of how it affects my body. But the one thing that rules my life more than anything is my medication! It’s something that I don’t really talk about as I guess it’s just a given that I have to take medication, but it’s one thing that really gets to me! Why? Because it feels like all I ever do is take some form of medication! My whole day every day is controlled by when I need to take my medication and whether I have to eat or can’t eat with it, etc. I did a little experiment and filmed myself taking my meds for a whole day. I ended up with 10 different videos!  A lot of the time, I’m taking multiple medications within this video as well! This includes three different meds for my Behçet’s disease, four pain meds, nerve meds, stomach protection, meds for anxiety and depression, three different types of laxatives, mouthwash to protect my throat from closing as I get older and vitamins/supplements. A lot of these are taken more than once throughout the day. I did this to give people an insight into a typical day for me. No matter how hard I try to prevent my illness from ruling my life, I can’t get away from the fact that I have to follow my medication routine… every day! Sometimes I get so fed up and I get angry over the fact that I can’t just go to bed if I’m tired because I have a whole routine before I can even think about going to sleep. It’s the same when I wake up — I’d love to be able to get up without having to take a handful of meds before I even start my day. The thing that annoys me the most is that there’s no end… this is potentially and very likely what my life will look like from now on. I know that they’re doing good and without them I’d be in a very bad way, but it doesn’t mean I can’t and don’t get frustrated with it — this isn’t “normal” and I do struggle. I know how important it is to take them and I’ve got into a really good routine, but it is hard! On top of that, I have three days of treatment every six weeks in hospital, which also fits into my medication/treatment schedule. Although I hate to admit it, my life really is ruled by my illness/medication. So there you go — I wanted to give everyone a little more of an insight into my life living with a very rare disease and how it really gets me down even when I try my best to not let it affect my spirits. You can find the video on Instagram or TikTok @risingfromtheillness.

Cat R.

My Medication Routine for Behcet's Disease Rules My Life

I hate the thought of my illness ruling my life but the truth is: in some ways it does and always will. I always have to plan ahead with everything I want to do and I miss out on a lot of things because of how it affects my body. But the one thing that rules my life more than anything is my medication! It’s something that I don’t really talk about as I guess it’s just a given that I have to take medication, but it’s one thing that really gets to me! Why? Because it feels like all I ever do is take some form of medication! My whole day every day is controlled by when I need to take my medication and whether I have to eat or can’t eat with it, etc. I did a little experiment and filmed myself taking my meds for a whole day. I ended up with 10 different videos!  A lot of the time, I’m taking multiple medications within this video as well! This includes three different meds for my Behçet’s disease, four pain meds, nerve meds, stomach protection, meds for anxiety and depression, three different types of laxatives, mouthwash to protect my throat from closing as I get older and vitamins/supplements. A lot of these are taken more than once throughout the day. I did this to give people an insight into a typical day for me. No matter how hard I try to prevent my illness from ruling my life, I can’t get away from the fact that I have to follow my medication routine… every day! Sometimes I get so fed up and I get angry over the fact that I can’t just go to bed if I’m tired because I have a whole routine before I can even think about going to sleep. It’s the same when I wake up — I’d love to be able to get up without having to take a handful of meds before I even start my day. The thing that annoys me the most is that there’s no end… this is potentially and very likely what my life will look like from now on. I know that they’re doing good and without them I’d be in a very bad way, but it doesn’t mean I can’t and don’t get frustrated with it — this isn’t “normal” and I do struggle. I know how important it is to take them and I’ve got into a really good routine, but it is hard! On top of that, I have three days of treatment every six weeks in hospital, which also fits into my medication/treatment schedule. Although I hate to admit it, my life really is ruled by my illness/medication. So there you go — I wanted to give everyone a little more of an insight into my life living with a very rare disease and how it really gets me down even when I try my best to not let it affect my spirits. You can find the video on Instagram or TikTok @risingfromtheillness.

Cat R.

My Medication Routine for Behcet's Disease Rules My Life

I hate the thought of my illness ruling my life but the truth is: in some ways it does and always will. I always have to plan ahead with everything I want to do and I miss out on a lot of things because of how it affects my body. But the one thing that rules my life more than anything is my medication! It’s something that I don’t really talk about as I guess it’s just a given that I have to take medication, but it’s one thing that really gets to me! Why? Because it feels like all I ever do is take some form of medication! My whole day every day is controlled by when I need to take my medication and whether I have to eat or can’t eat with it, etc. I did a little experiment and filmed myself taking my meds for a whole day. I ended up with 10 different videos!  A lot of the time, I’m taking multiple medications within this video as well! This includes three different meds for my Behçet’s disease, four pain meds, nerve meds, stomach protection, meds for anxiety and depression, three different types of laxatives, mouthwash to protect my throat from closing as I get older and vitamins/supplements. A lot of these are taken more than once throughout the day. I did this to give people an insight into a typical day for me. No matter how hard I try to prevent my illness from ruling my life, I can’t get away from the fact that I have to follow my medication routine… every day! Sometimes I get so fed up and I get angry over the fact that I can’t just go to bed if I’m tired because I have a whole routine before I can even think about going to sleep. It’s the same when I wake up — I’d love to be able to get up without having to take a handful of meds before I even start my day. The thing that annoys me the most is that there’s no end… this is potentially and very likely what my life will look like from now on. I know that they’re doing good and without them I’d be in a very bad way, but it doesn’t mean I can’t and don’t get frustrated with it — this isn’t “normal” and I do struggle. I know how important it is to take them and I’ve got into a really good routine, but it is hard! On top of that, I have three days of treatment every six weeks in hospital, which also fits into my medication/treatment schedule. Although I hate to admit it, my life really is ruled by my illness/medication. So there you go — I wanted to give everyone a little more of an insight into my life living with a very rare disease and how it really gets me down even when I try my best to not let it affect my spirits. You can find the video on Instagram or TikTok @risingfromtheillness.

Cat R.

No One Should Tell You How to Grieve a Miscarriage

Last fall marked seven years since I was told that I had miscarried my baby (with my ex-husband.) This was the the worst time of my life. At that point, I had never felt pain and loss like it. I struggled to be open up about how I was feeling as I was made to feel like my grief wasn’t justified. “It’s not a real life until it’s born.” “Are you not over it by now?” “I didn’t realize it was such a big deal.” Not being able to express my heartbreak was really toxic for me and I ended up being a nightmare around the people I loved most. The anger and pure devastation that was bubbling up inside me came out about the most menial of things. I was lashing out about anything and everything to let go of the anger and heartbreak I was feeling. To be honest, I still don’t talk about this as openly as I should. I was made to feel like I had a time limit on how long I had to grieve and “get over it.” The truth is, I don’t think I’ll ever get over it, and that’s OK! I lost the baby that I was growing inside me… I was talking about plans, names, prams, etc. I had time to get my head around being a mum (after a huge shock) and that was all ripped away from me within minutes of a scan at the hospital. At the time, I was recently in a new job and hadn’t told anyone about it. I went to a “hospital appointment” in my lunch break and then had to go back to my job and work like nothing had happened for the rest of the day with the news I had just received. I guess because of this and the fact I was faced with toxic comments from the person who was meant to support me the most, the whole grieving process was very suppressed and hidden for a long time. Even after seven years, I still ache with sadness when I think about that little life and what could have been. I don’t want to forget about that time of my life because that will always be a huge part of me. I have seen a few different mediums who have all told me that my dad is with a little boy who is my child, they have also told me the name we would have chosen if it was a boy. (I know at this point there may be some eye rolls) but … I can’t tell you how comforting it is to think of my dad up there with my baby, looking after and protecting him. This thought gives me such a feeling of peace and reassurance. I always hold onto this when the wave of sadness hits me. I don’t think anyone should be told how to feel after losing a baby. Everyone reacts and grieves differently. However you body chooses to react; just go with it — that will absolutely be the right thing for you! Just let it happen — feel the emotions, let them out and don’t let anyone dictate to you how you should feel and how long it should take for you to grieve. There is never a right or wrong way when it comes to grief. I still have hope that one day I’ll experience having a family and that I’ll be able hold my baby in my arms. This is something I’ve always dreamed of and hope will become a reality for us one day.

Cat R.

Grieving Your Old Life When You Live With a Chronic Illness

You know that feeling you get when a memory pops up or you come across an old photo of a loved one who passed away? That overwhelming feeling of sadness, accompanied by the memory of emotions from that exact moment? That’s how I feel when I see old photos of my healthier self, when I see myself doing the things I loved. I look at that person as someone I’ve lost — and in some ways, I have lost her… that version of myself no longer exists and sometimes that’s hard for me to comprehend. I feel like my life has had a very clear divide — pre-2017 and post-2017. I’m not saying my life was perfect pre-2017, as it definitely wasn’t, but I have moments of sadness and grief for the life and health that I had. Singing/performing on stage, freedom, independence, being able to drive, no regular treatments, no throwing up all the time, even the capability to have a poo whenever I needed one, and having a body that I could (mostly) rely on. The last few years has taught me so many lessons and shown me how to be comfortable in my own skin. I’ve learned not to take anything for granted and to be grateful for life, but it still doesn’t stop the gut-wrenching pain I feel when I’m reminded of what I was once capable of doing and what my life once looked like. I used to get angry and uptight, but I’ve learned to sit with it and accept that it’s OK to grieve. My illness has taken a lot from me and it’s OK to not be OK with it! It’s OK to be frustrated I can’t have a bath/wash my hair without help. It’s OK to be frustrated that I can’t leave the house on my own. It’s OK to be frustrated that my schedule revolves around my medications and treatments. It’s OK! This is not what a “normal life” looks like and it’s OK to feel these feelings of anger, hurt, and grief for the times when I was able to do these things. I used to hate looking at old videos and pictures of me, but it’s getting easier. It’s strange because I’m so much happier and content with my life now. I’m the happiest I’ve ever been in my relationship and feel so thankful for the amazing blessed life I have. I know that in my “old life” I wasn’t truly happy and I wasn’t content. I didn’t appreciate life, and I took even the littlest of things for granted. I know I have grown so much from everything I have had thrown at me in the past few years and a lot of people ask if I had the choice to change it, would I? The answer would be no, because although I’ve been on a tough path, I believe it’s leading me to where I need to be. My outset and outlook on life is totally different now. I appreciate more, I understand better, I take notice of the small things, and I open myself up to what I need to learn. I do miss the freedom and independence that my health gave me. But I’ve learned that it’s totally understandable that I miss it. It’s OK to grieve for the loss of my old life and to even get angry about it. Be kind and don’t be too hard on yourself.

Cat R.

Grieving Your Old Life When You Live With a Chronic Illness

You know that feeling you get when a memory pops up or you come across an old photo of a loved one who passed away? That overwhelming feeling of sadness, accompanied by the memory of emotions from that exact moment? That’s how I feel when I see old photos of my healthier self, when I see myself doing the things I loved. I look at that person as someone I’ve lost — and in some ways, I have lost her… that version of myself no longer exists and sometimes that’s hard for me to comprehend. I feel like my life has had a very clear divide — pre-2017 and post-2017. I’m not saying my life was perfect pre-2017, as it definitely wasn’t, but I have moments of sadness and grief for the life and health that I had. Singing/performing on stage, freedom, independence, being able to drive, no regular treatments, no throwing up all the time, even the capability to have a poo whenever I needed one, and having a body that I could (mostly) rely on. The last few years has taught me so many lessons and shown me how to be comfortable in my own skin. I’ve learned not to take anything for granted and to be grateful for life, but it still doesn’t stop the gut-wrenching pain I feel when I’m reminded of what I was once capable of doing and what my life once looked like. I used to get angry and uptight, but I’ve learned to sit with it and accept that it’s OK to grieve. My illness has taken a lot from me and it’s OK to not be OK with it! It’s OK to be frustrated I can’t have a bath/wash my hair without help. It’s OK to be frustrated that I can’t leave the house on my own. It’s OK to be frustrated that my schedule revolves around my medications and treatments. It’s OK! This is not what a “normal life” looks like and it’s OK to feel these feelings of anger, hurt, and grief for the times when I was able to do these things. I used to hate looking at old videos and pictures of me, but it’s getting easier. It’s strange because I’m so much happier and content with my life now. I’m the happiest I’ve ever been in my relationship and feel so thankful for the amazing blessed life I have. I know that in my “old life” I wasn’t truly happy and I wasn’t content. I didn’t appreciate life, and I took even the littlest of things for granted. I know I have grown so much from everything I have had thrown at me in the past few years and a lot of people ask if I had the choice to change it, would I? The answer would be no, because although I’ve been on a tough path, I believe it’s leading me to where I need to be. My outset and outlook on life is totally different now. I appreciate more, I understand better, I take notice of the small things, and I open myself up to what I need to learn. I do miss the freedom and independence that my health gave me. But I’ve learned that it’s totally understandable that I miss it. It’s OK to grieve for the loss of my old life and to even get angry about it. Be kind and don’t be too hard on yourself.