I planned on posting this last night when I got back from my holiday but I got halfway through writing it and couldn't write anymore. I don't often talk about my allergies. Maybe because they are just a part of me, or maybe because I hate thinking about allergic reactions and how close I come to death. For whatever reason I stopped. So here is my entry... started yesterday and finished today.
I've just gotten back from my (nearly) week long holiday with no internet so sorry for no posts. I had a really good time and did a lot of relaxing on the beach, however we also did a lot of walking which was seriously not great for my hip! Fraser island is beautiful and I hope to go back soon, although maybe with less walking. I think we did maybe 10kms of walking, whereas I don't think I've walked that far in 6 months since I hurt my hip. Everything was great until last night when I had a pretty bad allergic reaction to an unknown food which has left me pretty tired and sick. I'm also very worried because I don't know what I had a reaction to, so I think I'll be eating a bland, plain diet for a little while until I can figure out what went wrong.
Because of my allergies, my body is always fighting against itself however it seems to be really bad recently. I'm always tired and in pain. I got used to chronic migraines (sort of), then it was my elbow but this time it just seems worse. My hip is sore, everything is sore. All my joints ache and I can't stand for very long, but I can't sit for long either. I can't win. I'm not depressed. Anxious maybe. But not depressed. However I think it's time for me to see someone to work things out. They say that the people that are most likely to have autonomic dysfunction are hypermobile overachievers. Well I tick both those boxes. The other day my physio even noticed that I am terrible at saying no, at winding down and just letting go in general. But I can't go to my parents and ask to see a psychologist. It's just not in my nature. I need someone to tell me to see one. But who would I see? I need someone that understands chronic pain/illnesses. I need to go back to the pain clinic. I don't really know how to cope anymore. I've got so many more issues now than when I went. Actually that's not true. My issues just have labels and have become recognised. I've been taught that it isn't normal for every part of your body to hurt.
Today I overheard my parents talking. My mum was explaining what a chiropractor told her about hypermobility syndrome and Ehlers-Danlos Syndrome. She said that there is no cure or treatment really and that I'll have to deal with chronic pain other non-musculoskeletal issues for the rest of my life. Of course I knew this, however no one had actually told me this. I had come to the conclusion based on the research that I read etc. Hearing this broke my heart and even now it makes me want to cry. I know that this is my reality, I think I just need some time to come to terms with the gravity of the situation.
Anyway... on to the last 5 days of the chronic illness challenge.
So I guess the 30 day chronic illness challenge is over and I have the answers to the last 5 questions here...
Day 25: Name 5 activities that you have managed to pursue whilst being ill, and 5 activities that you have done that you wouldn't have managed to pursue if you hadn't become ill.
I've managed to continue singing, acting, dancing (mostly), volunteering and studying whilst being ill. 5 activities that I've done that I probably wouldn't have if I wasn't ill are studying Occupational Therapy (this is a big one), advocation/awareness of chronic pain, volunteering for a chronic pain support group, having a chronic illness instagram (I couldn't think of anything) and being part of two amazing individuals lives (Potato and Meatloaf aka pain clinic saviours).
Day 26: What impact has this had on your friends, family, partner, parents etc?
My illness has had a huge impact first and foremost on my family. I am lucky enough that my family can afford private health insurance and can afford to send me to countless specialists. However, I would be lying if I said that it hadn't had a financial and emotional impact on us. It does cost a lot to seek medical advice, have tests etc. and this has impacted my family. I was lucky that the pain clinic I attended was run through the public health system so my private health insurance didn't have to pay, I got to attend for free, so that was a very big bonus. My parents have been very supportive but I know that they are as frustrated, if not more, than I am with the health system and getting answers. Still, my mum comes and sits in the waiting room for most appointments and accepts when I don't want her in the room, just there for moral support before and after. She is amazing! Even at the chiropractor today, she talked to the guy about hypermobility when she was there for herself! She just never stops trying to find answers and ways to make my life easier. My friends... I lost a lot of friends simply because they didn't believe me. However I made some amazing new ones that have helped me through my highs and lows of chronic pain life, especially Potato who gets everything that I go through. Who is always there to support me. I would be lost without her.
Day 27: What's the most helpful advice you have had?
Hurt doesn't equal harm. It seems really obvious but when I was attending pain clinic, despite numerous MRI's and CT's there was always a thought in the back of my mind that my migraines were caused by something more sinister. Then someone told me that hurt doesn't equal harm. This is so true for chronic pain. Often there is no reason for the pain that you feel. It has really helped me through everything with my hip, knowing that just because it hurts, nothing serious is happening.
Day 28: Name 5 things you have achieved despite your illness.
Becoming my high school's music captain, being the lead in my school production, graduating, achieving an OP 5 (and getting into my course (OT)) and getting and holding down a part time job.
Day 29: What has helped you cope with the stress of this lifestyle?
To be honest I'm not sure that I really do cope. Not very well at least. I just live day to day, trying to hold myself together and potentially enjoy life at the same time. My family and friends have been a huge support and have helped me cope, but I still have days when I walk out of physio or class or just get up and cry because everything is too much. BUT!! That's ok. It's ok not to cope everyday. That's hoe life works. I might need a bit more help coping though... haha
Day 30: And finally... starting at your toes and working up to your head, name each part of your body and how you illness has affected it, followed by something you like about that part of your body.
Do you have all day? haha I know my post is super long but bare with me. I might just do the pain things because hypermobility affects all aspects of my body.
Toes, feet, ankles, heels= My ankles are very flexible so they often give way when I'm working. I also have terrible proprioception so I fall over because I don't know where my feet (and other joints) are in space. My ankles also crack terribly. Something I like... my toe nails. Does that count? Nail polish seems to last really long on them and they look pretty.
Leg and knees= These hurt. My knees turn in like there is no tomorrow and crack and hurt all the time. My legs are just scarred from a life time of eczema. Also, bruises and scratches take ages to heal due to EDS. Something I like... I have to be honest, I don't like anything about my legs. They are ugly and scarred, both from bruises and eczema. Sorry!
Hips= They dislocate, pop, scrape and hurt. There is nothing good about them apart from the fact that they look good in proportion to the rest of my body haha. They are one of the worse chronic pain spots in my body!
Stomach, abdomen, chest= I have lots of GI issues as a result of EDS as well as issues from allergies. I also have asthma that can have a major impact on how I feel each day. Also EDS means that I often dislocate ribs just by lying down and the connective tissue can stretch and cause significant pain. Something I like... My stomach doesn't have any eczema on it and it pretty flat... vain I know! haha
Hands, fingers, arms, shoulders and back= PAIN PAIN AND MORE PAIN. My fingers dislocate and hurt, so do my hands. My elbows hyperextend and my left one aches from when I fractured it. My shoulders ache from poor posture as a result of hypermobility and I have no back strength so that hurts as well. Something I like... I actually like that my elbows hyperextend... I know its bad because it hurts and its bad for my joints etc. but I think it looks cool. It's always been a party trick of my own.
Andy finally... Head= I get chronic migraines, vestibular migraines and daily headaches. These are terribly debilitating and I wouldn't wish them on my worst enemy. They are terrible and a lot of days I can't even get out of bed. I've been learning to cope with these and I'm starting to deal with these. However there are days that are completely horrible though! Something I like... I love my hair. It is a lovely brown colour and I've never dyed it and it just makes me extremely happy. However, it can get very heavy and can give me migraines.
Sorry for the super long long post!
BB :)
I've just gotten back from my (nearly) week long holiday with no internet so sorry for no posts. I had a really good time and did a lot of relaxing on the beach, however we also did a lot of walking which was seriously not great for my hip! Fraser island is beautiful and I hope to go back soon, although maybe with less walking. I think we did maybe 10kms of walking, whereas I don't think I've walked that far in 6 months since I hurt my hip. Everything was great until last night when I had a pretty bad allergic reaction to an unknown food which has left me pretty tired and sick. I'm also very worried because I don't know what I had a reaction to, so I think I'll be eating a bland, plain diet for a little while until I can figure out what went wrong.
Because of my allergies, my body is always fighting against itself however it seems to be really bad recently. I'm always tired and in pain. I got used to chronic migraines (sort of), then it was my elbow but this time it just seems worse. My hip is sore, everything is sore. All my joints ache and I can't stand for very long, but I can't sit for long either. I can't win. I'm not depressed. Anxious maybe. But not depressed. However I think it's time for me to see someone to work things out. They say that the people that are most likely to have autonomic dysfunction are hypermobile overachievers. Well I tick both those boxes. The other day my physio even noticed that I am terrible at saying no, at winding down and just letting go in general. But I can't go to my parents and ask to see a psychologist. It's just not in my nature. I need someone to tell me to see one. But who would I see? I need someone that understands chronic pain/illnesses. I need to go back to the pain clinic. I don't really know how to cope anymore. I've got so many more issues now than when I went. Actually that's not true. My issues just have labels and have become recognised. I've been taught that it isn't normal for every part of your body to hurt.
Today I overheard my parents talking. My mum was explaining what a chiropractor told her about hypermobility syndrome and Ehlers-Danlos Syndrome. She said that there is no cure or treatment really and that I'll have to deal with chronic pain other non-musculoskeletal issues for the rest of my life. Of course I knew this, however no one had actually told me this. I had come to the conclusion based on the research that I read etc. Hearing this broke my heart and even now it makes me want to cry. I know that this is my reality, I think I just need some time to come to terms with the gravity of the situation.
Anyway... on to the last 5 days of the chronic illness challenge.
So I guess the 30 day chronic illness challenge is over and I have the answers to the last 5 questions here...
Day 25: Name 5 activities that you have managed to pursue whilst being ill, and 5 activities that you have done that you wouldn't have managed to pursue if you hadn't become ill.
I've managed to continue singing, acting, dancing (mostly), volunteering and studying whilst being ill. 5 activities that I've done that I probably wouldn't have if I wasn't ill are studying Occupational Therapy (this is a big one), advocation/awareness of chronic pain, volunteering for a chronic pain support group, having a chronic illness instagram (I couldn't think of anything) and being part of two amazing individuals lives (Potato and Meatloaf aka pain clinic saviours).
Day 26: What impact has this had on your friends, family, partner, parents etc?
My illness has had a huge impact first and foremost on my family. I am lucky enough that my family can afford private health insurance and can afford to send me to countless specialists. However, I would be lying if I said that it hadn't had a financial and emotional impact on us. It does cost a lot to seek medical advice, have tests etc. and this has impacted my family. I was lucky that the pain clinic I attended was run through the public health system so my private health insurance didn't have to pay, I got to attend for free, so that was a very big bonus. My parents have been very supportive but I know that they are as frustrated, if not more, than I am with the health system and getting answers. Still, my mum comes and sits in the waiting room for most appointments and accepts when I don't want her in the room, just there for moral support before and after. She is amazing! Even at the chiropractor today, she talked to the guy about hypermobility when she was there for herself! She just never stops trying to find answers and ways to make my life easier. My friends... I lost a lot of friends simply because they didn't believe me. However I made some amazing new ones that have helped me through my highs and lows of chronic pain life, especially Potato who gets everything that I go through. Who is always there to support me. I would be lost without her.
Day 27: What's the most helpful advice you have had?
Hurt doesn't equal harm. It seems really obvious but when I was attending pain clinic, despite numerous MRI's and CT's there was always a thought in the back of my mind that my migraines were caused by something more sinister. Then someone told me that hurt doesn't equal harm. This is so true for chronic pain. Often there is no reason for the pain that you feel. It has really helped me through everything with my hip, knowing that just because it hurts, nothing serious is happening.
Day 28: Name 5 things you have achieved despite your illness.
Becoming my high school's music captain, being the lead in my school production, graduating, achieving an OP 5 (and getting into my course (OT)) and getting and holding down a part time job.
Day 29: What has helped you cope with the stress of this lifestyle?
To be honest I'm not sure that I really do cope. Not very well at least. I just live day to day, trying to hold myself together and potentially enjoy life at the same time. My family and friends have been a huge support and have helped me cope, but I still have days when I walk out of physio or class or just get up and cry because everything is too much. BUT!! That's ok. It's ok not to cope everyday. That's hoe life works. I might need a bit more help coping though... haha
Day 30: And finally... starting at your toes and working up to your head, name each part of your body and how you illness has affected it, followed by something you like about that part of your body.
Do you have all day? haha I know my post is super long but bare with me. I might just do the pain things because hypermobility affects all aspects of my body.
Toes, feet, ankles, heels= My ankles are very flexible so they often give way when I'm working. I also have terrible proprioception so I fall over because I don't know where my feet (and other joints) are in space. My ankles also crack terribly. Something I like... my toe nails. Does that count? Nail polish seems to last really long on them and they look pretty.
Leg and knees= These hurt. My knees turn in like there is no tomorrow and crack and hurt all the time. My legs are just scarred from a life time of eczema. Also, bruises and scratches take ages to heal due to EDS. Something I like... I have to be honest, I don't like anything about my legs. They are ugly and scarred, both from bruises and eczema. Sorry!
Hips= They dislocate, pop, scrape and hurt. There is nothing good about them apart from the fact that they look good in proportion to the rest of my body haha. They are one of the worse chronic pain spots in my body!
Stomach, abdomen, chest= I have lots of GI issues as a result of EDS as well as issues from allergies. I also have asthma that can have a major impact on how I feel each day. Also EDS means that I often dislocate ribs just by lying down and the connective tissue can stretch and cause significant pain. Something I like... My stomach doesn't have any eczema on it and it pretty flat... vain I know! haha
Hands, fingers, arms, shoulders and back= PAIN PAIN AND MORE PAIN. My fingers dislocate and hurt, so do my hands. My elbows hyperextend and my left one aches from when I fractured it. My shoulders ache from poor posture as a result of hypermobility and I have no back strength so that hurts as well. Something I like... I actually like that my elbows hyperextend... I know its bad because it hurts and its bad for my joints etc. but I think it looks cool. It's always been a party trick of my own.
Andy finally... Head= I get chronic migraines, vestibular migraines and daily headaches. These are terribly debilitating and I wouldn't wish them on my worst enemy. They are terrible and a lot of days I can't even get out of bed. I've been learning to cope with these and I'm starting to deal with these. However there are days that are completely horrible though! Something I like... I love my hair. It is a lovely brown colour and I've never dyed it and it just makes me extremely happy. However, it can get very heavy and can give me migraines.
Sorry for the super long long post!
BB :)
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