8 Ways My Life Has Changed from Chronic UTI (or IC or Bladder Pain)
If you live with a long-term or chronic illness, you will find yourself changing your lifestyle to adapt to your symptoms. A chronic disease is described as an illness lasting 3 months or more. A hospital surgeon said that I would be needing a medical device to rely on for the rest of my life. That was something I didn't want to resign myself to, so I researched for natural methods to recover, since the body is a powerful self-healing organism. With the guidance of two General Practitioners, two drop-in doctors (as back-up), a US-based Dietician specializing in my field of illness (and who also suffers from the same condition), a highly specialized Physiotherapist, and a Naturopath, we were able to reverse my condition very slowly. The hospital surgeon told me she was shocked at my new reversing state, and said that I could recover in 1 year's time if I can keep it up. There is still a slight chance of my condition stretching to several years, and there is always the risk of it becoming permanent. My goal is to try to be mostly healed by Summer 2019. Hopefully.
Having a long-term illness can definitely change anyone's lifestyle. At first, I was miserable and in strong denial about it, but I have learned to slowly adapt. Here are 8 ways that my lifestyle has changed because of long-term illness.
1. Reading, gaming, movies and crafts became my world
Since I have little energy to go out (only do 1 - 2 outings a month), that leaves only sedentary things to do in the home. I don't have much of a social life since I can't work nor volunteer, get fatigued from walking, and can't eat most foods in restaurants. I read books and magazines to pass the time. I also binge-watch streaming TV series and movies, and immerse myself in online games. I host board game afternoons in my home so that I can still see a few of my friends in-person. But one thing I've learned is that being chained to your home by an invisible illness will have you spend most of your social time online. My previous lifestyle of paddle-boarding, swimming, and dining out are things I cannot do anymore for a long time. I am now resigned to sitting at my desk for hours in front of my laptop. But I also took up some new and old hobbies - I began painting miniature figurines and sketching much more, since these are things I can easily do without exerting my body. The main thing is to keep yourself busy and set goals, so you don't sink into deeper depression from isolation, pain, and boredom.
2. I have to schedule everything in advance
I reject any unplanned activity. I need time to rest and accumulate energy before I can leave my home. Leaving the comfort of my apartment means that I will have limited access to the foods I can eat, my spring bottled waters, my pain relievers and supplements, changes of clothes, air conditioning, a quiet place to lie down, and most importantly, unlimited easy access to the TOILET. One trip takes a lot of planning and preparation beforehand. Even going to a restaurant means I have to call the venue two days in advance to custom prepare a meal that is bladder friendly. A quick trip to meet a friend can exhaust me for days if I haven’t planned on resting beforehand, and always requires packing all my supplies in a mini suitcase to take along, even if it is for a few hours. So I try to avoid going out unless absolutely necessary. I do go out when I am craving social interaction, because I rarely get any of it after this condition came out of nowhere.
3. I've lost friends
When you can't go out on most days because you are in pain or exhausted, most of your friends will move on without you. Your healthy friends eventually realize that this isn’t something where you get well in a week or two. They learn that you will be sick long-term, because the prognosis of chronic illness is often unknown. Being friends with a chronically ill person requires patience, and it understandably isn't for everyone. Sometimes even close friends or family members distance themselves away, because they don't want to deal with a sick person. I see my doctors much more often than my friends. About every 2 to 3 days, I have a doctor or specialist appointment.
4. I keep a detailed Bladder Diary
I have a daily journal on me at all times so I can track my urinary frequency, bowel movements, levels of bladder pain, food reactions, supplements and medication. I bring this with me to my healthcare teams so they can get more clues to my diagnoses. I also use it to find out what is working and what isn't for my condition. I never had to do this before. The most 'journaling' I used to do was setting up my cell phone calendar for work meetings and friend outings. Now I'm doing something that feels so medical and sensitive.
5. I seeked out IC and Chronic UTI friends
I've started searching for new friends online who have similar conditions as me. This was done via support groups that I found through website forums, Facebook groups, and asking hospital specialists. I have been scheduling international phone calls with other patients in US, UK, and Australia. It is pretty amazing! You can find people who have struggled for years, giving you advice and courage. You will find others whose schedules revolve around hospitals and doctors like yourself, and a few have been trading quirky selfies of each others' medications and hospital selfies on the Facebook threads. You start to feel understood within this group, and you also start to feel more embraced and less 'abnormal'. I have not yet met anyone with the same illness as me in Canada, let alone even in Vancouver. I have a lonely physical condition that my urologist says affects 3% of Canadian women, but I hope to find some Canadians (especially Vancouverites) with Interstitial Cystitis. I even put up an ad on Craigslist for it but only got weird replies or the odd troll.
6. Diet change
I used to be a Pesco-pollo Vegetarian. This means I ate everything except red meats and dairy. Ever since my condition worsened, I tried completely switching my diet. As soon as I did 1 week of being a raw vegetarian, my pain shockingly subsided by 50%. When I switched to a raw alkaline vegan diet and taking in natural spring water as my only beverage, my pain diminished to 75%. The urinary frequency has almost diminished, from 25 - 30 times a day to now 8 - 11 times a day. However, the urge to always want to urinate constantly remains and puts so much pressure and strain on my bladder. My urologist and one of my GPs were intrigued and wanted to know what I was doing. However, as soon as I try to cheat by eating restaurant foods or delicious sweets, my bladder is sent into spasms of pain. I found that I can keep the pain minimal if I stick to an extremely clean and bland diet of raw alkaline vegetables and stay away from acidic fruits and veges, gluten, wheat, dairy, salt, sugar, seasonings, spices and any sauces. I started incorporating a little bit of plain white rice and organic grass-fed meats for energy, because I was feeling really tired from the raw vegan diet. Since I have such a restricted diet, I cannot eat nearly 99% of restaurant foods, and cannot buy 90% food I see in grocery stores. The last few months have been a challenge shopping for ingredients, even at health food stores. I lost 20 lbs because of the restricted diet - I was already slim to begin with, so this got me down to a super low weight. I am slowly trying to gain it back.
7. I wear loose clothes
I used to wear tight-fitting clothes that I felt looked good for my figure. I was really into fashion and loved dresses with heels. Now I don't care anymore, I just wear loose flowing clothes so they don't press onto my bladder or into my lower area. Wearing heels (even low ones) make my bladder hurt when I walk. I wear flat sandals and walking shoes only. It's all about comfort.
8. I sleep all the time, any time
I try to sleep by 10 pm, since the body does regenerative sleep between 10 pm - 2 am. But sometimes I am researching so much on the internet for cures that I end up going to bed very late such as 1am or 2am. I also sleep 10 hours at night, and take 1 or 2 mini naps throughout the day which brings this up to 12 - 14 hour sleeping per day. Everything is pretty exhausting. Even after taking a twenty minute walk, I almost always have to take a nap after. But because I'm like a Koala (always resting or sleeping), I am slow with catching up with my calls/texts/voicemails, and tend to check voicemails a day to a few days later. I need to knock myself out with Benedryls in order to fall asleep, so I don't get woken up to use the washroom several times during sleep. Even with Benedryl, there are some times where I get up to use the washroom 2 - 4 times a night, and other times none to once. It really depends how many Benedryls I take, and I use them as my "sleeping pills". I would think it's a lot safer to take them since they're over-the-counter, than to take sleeping pills anyway.
Having a long-term illness can definitely change anyone's lifestyle. At first, I was miserable and in strong denial about it, but I have learned to slowly adapt. Here are 8 ways that my lifestyle has changed because of long-term illness.
1. Reading, gaming, movies and crafts became my world
Since I have little energy to go out (only do 1 - 2 outings a month), that leaves only sedentary things to do in the home. I don't have much of a social life since I can't work nor volunteer, get fatigued from walking, and can't eat most foods in restaurants. I read books and magazines to pass the time. I also binge-watch streaming TV series and movies, and immerse myself in online games. I host board game afternoons in my home so that I can still see a few of my friends in-person. But one thing I've learned is that being chained to your home by an invisible illness will have you spend most of your social time online. My previous lifestyle of paddle-boarding, swimming, and dining out are things I cannot do anymore for a long time. I am now resigned to sitting at my desk for hours in front of my laptop. But I also took up some new and old hobbies - I began painting miniature figurines and sketching much more, since these are things I can easily do without exerting my body. The main thing is to keep yourself busy and set goals, so you don't sink into deeper depression from isolation, pain, and boredom.
2. I have to schedule everything in advance
I reject any unplanned activity. I need time to rest and accumulate energy before I can leave my home. Leaving the comfort of my apartment means that I will have limited access to the foods I can eat, my spring bottled waters, my pain relievers and supplements, changes of clothes, air conditioning, a quiet place to lie down, and most importantly, unlimited easy access to the TOILET. One trip takes a lot of planning and preparation beforehand. Even going to a restaurant means I have to call the venue two days in advance to custom prepare a meal that is bladder friendly. A quick trip to meet a friend can exhaust me for days if I haven’t planned on resting beforehand, and always requires packing all my supplies in a mini suitcase to take along, even if it is for a few hours. So I try to avoid going out unless absolutely necessary. I do go out when I am craving social interaction, because I rarely get any of it after this condition came out of nowhere.
3. I've lost friends
When you can't go out on most days because you are in pain or exhausted, most of your friends will move on without you. Your healthy friends eventually realize that this isn’t something where you get well in a week or two. They learn that you will be sick long-term, because the prognosis of chronic illness is often unknown. Being friends with a chronically ill person requires patience, and it understandably isn't for everyone. Sometimes even close friends or family members distance themselves away, because they don't want to deal with a sick person. I see my doctors much more often than my friends. About every 2 to 3 days, I have a doctor or specialist appointment.
4. I keep a detailed Bladder Diary
I have a daily journal on me at all times so I can track my urinary frequency, bowel movements, levels of bladder pain, food reactions, supplements and medication. I bring this with me to my healthcare teams so they can get more clues to my diagnoses. I also use it to find out what is working and what isn't for my condition. I never had to do this before. The most 'journaling' I used to do was setting up my cell phone calendar for work meetings and friend outings. Now I'm doing something that feels so medical and sensitive.
5. I seeked out IC and Chronic UTI friends
I've started searching for new friends online who have similar conditions as me. This was done via support groups that I found through website forums, Facebook groups, and asking hospital specialists. I have been scheduling international phone calls with other patients in US, UK, and Australia. It is pretty amazing! You can find people who have struggled for years, giving you advice and courage. You will find others whose schedules revolve around hospitals and doctors like yourself, and a few have been trading quirky selfies of each others' medications and hospital selfies on the Facebook threads. You start to feel understood within this group, and you also start to feel more embraced and less 'abnormal'. I have not yet met anyone with the same illness as me in Canada, let alone even in Vancouver. I have a lonely physical condition that my urologist says affects 3% of Canadian women, but I hope to find some Canadians (especially Vancouverites) with Interstitial Cystitis. I even put up an ad on Craigslist for it but only got weird replies or the odd troll.
6. Diet change
I used to be a Pesco-pollo Vegetarian. This means I ate everything except red meats and dairy. Ever since my condition worsened, I tried completely switching my diet. As soon as I did 1 week of being a raw vegetarian, my pain shockingly subsided by 50%. When I switched to a raw alkaline vegan diet and taking in natural spring water as my only beverage, my pain diminished to 75%. The urinary frequency has almost diminished, from 25 - 30 times a day to now 8 - 11 times a day. However, the urge to always want to urinate constantly remains and puts so much pressure and strain on my bladder. My urologist and one of my GPs were intrigued and wanted to know what I was doing. However, as soon as I try to cheat by eating restaurant foods or delicious sweets, my bladder is sent into spasms of pain. I found that I can keep the pain minimal if I stick to an extremely clean and bland diet of raw alkaline vegetables and stay away from acidic fruits and veges, gluten, wheat, dairy, salt, sugar, seasonings, spices and any sauces. I started incorporating a little bit of plain white rice and organic grass-fed meats for energy, because I was feeling really tired from the raw vegan diet. Since I have such a restricted diet, I cannot eat nearly 99% of restaurant foods, and cannot buy 90% food I see in grocery stores. The last few months have been a challenge shopping for ingredients, even at health food stores. I lost 20 lbs because of the restricted diet - I was already slim to begin with, so this got me down to a super low weight. I am slowly trying to gain it back.
7. I wear loose clothes
I used to wear tight-fitting clothes that I felt looked good for my figure. I was really into fashion and loved dresses with heels. Now I don't care anymore, I just wear loose flowing clothes so they don't press onto my bladder or into my lower area. Wearing heels (even low ones) make my bladder hurt when I walk. I wear flat sandals and walking shoes only. It's all about comfort.
8. I sleep all the time, any time
I try to sleep by 10 pm, since the body does regenerative sleep between 10 pm - 2 am. But sometimes I am researching so much on the internet for cures that I end up going to bed very late such as 1am or 2am. I also sleep 10 hours at night, and take 1 or 2 mini naps throughout the day which brings this up to 12 - 14 hour sleeping per day. Everything is pretty exhausting. Even after taking a twenty minute walk, I almost always have to take a nap after. But because I'm like a Koala (always resting or sleeping), I am slow with catching up with my calls/texts/voicemails, and tend to check voicemails a day to a few days later. I need to knock myself out with Benedryls in order to fall asleep, so I don't get woken up to use the washroom several times during sleep. Even with Benedryl, there are some times where I get up to use the washroom 2 - 4 times a night, and other times none to once. It really depends how many Benedryls I take, and I use them as my "sleeping pills". I would think it's a lot safer to take them since they're over-the-counter, than to take sleeping pills anyway.