Sorry I've been so absent recently. I've had loads of exams this week and I've been quite stressed and not super healthy. I don't think my body has been coping very well with all the stress and I've had some GI flare ups and joint issues these past couple of days. On Saturday night I went to a party and I paid for my choices the next day as I couldn't walk without my crutches. I do through phases where I am almost jumping off the walls and feeling amazing and the next day I can't walk. Boom and Bust. I've never been very good at managing the boom and bust and stress cycle. I guess I haven't really mastered the art of pacing quite yet. I also did something quite stupid in my semi-drunken state on Saturday. I told some of my friends what I'd been going through. Usually I would never say anything and I wish that I could take it back, but I can't. I guess in that moment I just felt safe. Now don't get me wrong, I didn't tell them everything. Like how I want to cry after most physio sessions, or how I'm worried that the glue that is holding me together won't be sticky for much longer. How I'm worried that soon I'll be completely disabled. There are even some things that I have trouble admitting to myself. I need someone to see that I think. I need a professional person to see that I'm not coping very well and that I need help, because I think I do. I don't think I'm coping very well and in reality, who would? It's hard to be told you have an untreatable degenerative illness that they know nothing about. Anyone, I promise I'm getting back on track with the 30 day chronic illness challenge. Tonight I'll write day 4,5,6,7 and 8.
Day 4: How have your friends and family reacted to it (chronic illness)?
Well my parents have done everything they can to be inclusive and get me the best medical attention they can. I kind of stopped talking to my mum about my chronic migraines after the pain clinic, but I am still at that stage where I talk to her about my hips etc. My dad has just been supportive. I don't even know if he truly understands what's going on, but he takes me to appointments and sits with me and is just there when I need a hug. He doesn't ask awkward questions and accepts when I don't want to talk about it. My extended family doesn't really know what to do with me. My aunties, who probably know the most in my extended family have been really supportive and ask me questions etc. I'm pretty sure my aunty even got me in to a specialist. My cousins and I don't talk about it. I don't want to. I'm the youngest in my family and there have always been some issues surrounding my allergies in the family so we don't talk about it. My friends... I lost a lot of close friends when I first got sick. I mean they didn't abandon me, but eventually they didn't want to listen and I didn't want to talk. I got special consideration for assessments at school and they found that really hard because they didn't really understand what was going on. I have some friends that have been amazing, and whilst we may not talk about it a lot, they are so accepting of who I am.
Day 5: How does being chronically ill make you feel?
I feel like the health system has failed me. Most of the time I am treated like a hypochondriac. Much of the medical system hasn't caught up to the fact that chronic pain is a real illness. It doesn't have to be a side effect of something else. I am sad, I avoid going to the doctor now because I am worried that my scans won't show anything. In fact, I end up lying in an MRI machine praying that it finds something just so that I can have an explanation and prove that I am not crazy. I am not crazy, but being chronically ill, especially my chronic pain has brought up I think a lot of underlying issues for me. Many issues that I think I could have gone my whole life without having a problem with. I have anxiety and get severely stressed. I have major acceptance issues, and like most autonomic patients, I am an overachiever, which didn't help when I was incapacitated. However, being chronically ill has also made me stronger. It's ok to be sad sometimes, as long as you pick yourself up again and more on. As they say, build a bridge and get over it.
Day 6: If you could have told yourself something when you first remember these symptoms arising, what would you have said?
My chronic pain started the day I was born. I have just lived with it for so long that I got used to it, I didn't think the random aches and pains were a big deal. If there is one thing I could have said to myself when I started getting migraines, it would have to be that 'there are people out there that can help.' I think that is one of the things that could have been done better. If I'd been seen by the right professionals earlier, I might be in less pain today, I might never have hurt my hip.
Day 7: What was the biggest realisation you have had?
The biggest realisation I have had... That everyone has their own issues. That you can't look at someone and just assume you know everything there is to know about them. I have had too many people do that to me and its an awful feeling, when people just assume you are ok or whatever because you don't show any outwards signs of anything. That even happened to me at the pain clinic. Don't get me wrong, I am very grateful I got to participate, however ever there people told me how strong I was, how well I was dealing with everything, when in reality I was sick, really sick. I wasn't coping at all. I was in a dark place, I was just very good at hiding it. If you'd talked to me then, and I mean really talked to me, you would have seen that I am fairly good at hiding what's wrong, but once I open up, that's it, I can't stop. They could have turned me from a smiling girl hiding painful secretes and worries, into a blubbering mess telling all her problems in minutes. If only. On reflection, I wish I had opened up. If I ever get to have a conversation with them again, I will open up, I need to.
Day 8: Where do you see yourself in 5 years time?
If you'd asked me this 3 years ago I would have said something completely different. Now... I see myself working as an Occupational Therapist either in pediatric oncology, chronic pain or hypermobility. Using my experiences in some of those fields to help me.
Sorry for the long post!
BB :)
Day 4: How have your friends and family reacted to it (chronic illness)?
Well my parents have done everything they can to be inclusive and get me the best medical attention they can. I kind of stopped talking to my mum about my chronic migraines after the pain clinic, but I am still at that stage where I talk to her about my hips etc. My dad has just been supportive. I don't even know if he truly understands what's going on, but he takes me to appointments and sits with me and is just there when I need a hug. He doesn't ask awkward questions and accepts when I don't want to talk about it. My extended family doesn't really know what to do with me. My aunties, who probably know the most in my extended family have been really supportive and ask me questions etc. I'm pretty sure my aunty even got me in to a specialist. My cousins and I don't talk about it. I don't want to. I'm the youngest in my family and there have always been some issues surrounding my allergies in the family so we don't talk about it. My friends... I lost a lot of close friends when I first got sick. I mean they didn't abandon me, but eventually they didn't want to listen and I didn't want to talk. I got special consideration for assessments at school and they found that really hard because they didn't really understand what was going on. I have some friends that have been amazing, and whilst we may not talk about it a lot, they are so accepting of who I am.
Day 5: How does being chronically ill make you feel?
I feel like the health system has failed me. Most of the time I am treated like a hypochondriac. Much of the medical system hasn't caught up to the fact that chronic pain is a real illness. It doesn't have to be a side effect of something else. I am sad, I avoid going to the doctor now because I am worried that my scans won't show anything. In fact, I end up lying in an MRI machine praying that it finds something just so that I can have an explanation and prove that I am not crazy. I am not crazy, but being chronically ill, especially my chronic pain has brought up I think a lot of underlying issues for me. Many issues that I think I could have gone my whole life without having a problem with. I have anxiety and get severely stressed. I have major acceptance issues, and like most autonomic patients, I am an overachiever, which didn't help when I was incapacitated. However, being chronically ill has also made me stronger. It's ok to be sad sometimes, as long as you pick yourself up again and more on. As they say, build a bridge and get over it.
Day 6: If you could have told yourself something when you first remember these symptoms arising, what would you have said?
My chronic pain started the day I was born. I have just lived with it for so long that I got used to it, I didn't think the random aches and pains were a big deal. If there is one thing I could have said to myself when I started getting migraines, it would have to be that 'there are people out there that can help.' I think that is one of the things that could have been done better. If I'd been seen by the right professionals earlier, I might be in less pain today, I might never have hurt my hip.
Day 7: What was the biggest realisation you have had?
The biggest realisation I have had... That everyone has their own issues. That you can't look at someone and just assume you know everything there is to know about them. I have had too many people do that to me and its an awful feeling, when people just assume you are ok or whatever because you don't show any outwards signs of anything. That even happened to me at the pain clinic. Don't get me wrong, I am very grateful I got to participate, however ever there people told me how strong I was, how well I was dealing with everything, when in reality I was sick, really sick. I wasn't coping at all. I was in a dark place, I was just very good at hiding it. If you'd talked to me then, and I mean really talked to me, you would have seen that I am fairly good at hiding what's wrong, but once I open up, that's it, I can't stop. They could have turned me from a smiling girl hiding painful secretes and worries, into a blubbering mess telling all her problems in minutes. If only. On reflection, I wish I had opened up. If I ever get to have a conversation with them again, I will open up, I need to.
Day 8: Where do you see yourself in 5 years time?
If you'd asked me this 3 years ago I would have said something completely different. Now... I see myself working as an Occupational Therapist either in pediatric oncology, chronic pain or hypermobility. Using my experiences in some of those fields to help me.
Sorry for the long post!
BB :)
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