Chronic Illness and Depression

Statistics show that 1 out of 4 people suffer from mental illness. Stop and think about this for a second. In regards to family, this means that someone in your family probably has or has had a mental illness. If you broaden the scope to those outside of your family you know, it’s more than likely that one or more of your friends  or acquaintances has or has had a mental illness. Broaden the scope even more and probably more than one person you work with has had or is suffering from a mental illness. When I first read the statistics, I didn’t comprehend how large the percentage of the population that suffers from mental illness really is. Numbers have never been my strong point, When I broke it down like I did for you, I was flabbergasted. These statistics mean that mental illness is more common than heart disease, diabetes and cancer. 

For the purpose of this blog, I will focus on depression as it pertains to chronic illness, or chronic pain syndrome. For those of us with chronic illness’ the problem is twofold: We have not only the illness to deal with but the changing of our lives as we know it. Having a cold or the flu is irritating but on some level, we know it will run it’s course and go away. With a chronic illness, we don’t have that luxury. The pain may last for days, weeks, months or years or in some cases go into remission for an undetermined amount of time, We don’t have a lot of control of when the pain may or may not end. C-o-n-t-r-o-l. A seven letter word that’s so hard to grasp. I would love to have control over not only my illness’ but also the effects that it has on my daily life. I would love to make plans to do something I find fun and interesting and know that I will actually be able to follow through with the plans. The truth of the matter is, I can’t. So I don’t.

Having a chronic illness does not always lead to depression but it can and often does. Just like the chronic illness itself, depression can last for days, weeks, months and years, I have been depressed on several occasions, for several different reasons. Here are a few examples: I don’t feel well enough to go to work so I call in sick…again. I’m out of sick time so this is time without pay. I’ve tried to work out and usually feel good while working out but whatever it is I’m doing isn’t good for IC bodies and I feel the wrong kind of pain within hours. This has left me with a body that I’m not too appreciative of. I want to take my 10 year old to the park to kick the soccer ball around like I promised him I would that morning. I can’t follow through with it because when I made the promise I felt fine, when the time came to follow through I was in pain-this is a big reason I don’t make plans. I have been sick for weeks at a time, forgetting what it’s like to have a “normal” day. I have been to see doctors who throw their hands up in the air and tell me they haven’t the slightest clue what’s wrong with me but most likely whatever it is, it’s all in my head. I have been fortunate in that these minor bouts with depression don’t last longer than a few days to a week. However, I’ve known people with chronic illness’ whose depression has lasted for much longer or is ongoing,

One of the biggest triggers of depression for me is isolation. Many people can empathize with someone because they have the cold or the flu, Even a broken bone or obvious injury can be a conversation starter with those who have suffered the same or similar injury. But a chronic illness is difficult because it’s not usually noticeable to others, I can try and explain to others what it is I’m feeling and they may try and understand but they don’t. They can’t. For the past 5 or 6 years, I’ve had this burning between my pubic bone and belly button. I’ve felt like I’m on fire from the inside out. My trips to the bathroom both day and night are plentiful. Not many people can relate to that. After all this time I finally have a diagnosis of IC. While it’s great that I finally know what the problem is I am still alone in the battle for now. Over 1 million people have IC, but I have yet to meet one person who admits to suffering from it.

Another trigger for depression is what I like to call the spiral effect. I wake up in the morning and don’t feel well enough to get out of bed. I call in sick, as mentioned earlier, and have to take time off without pay, I medicate. I sleep. I wake up and see how I’m feeling, I take more pills and get some rest. I wake up the next day and may very well feel better but I’m so ‘hungover’ from my medicine that I can’t get up and go to work which leads to more time off without pay. Which then leads to more depression when I get my paycheck and I’m short hours, These medications I speak of as well as the visits to see the specialist aren’t cheap so that adds to the depression. One or two days out sick a week can make quite a dent in my savings account.

The change I’ve had to make in my diet is also a stresser, I have been gluten-free for two and half years, thinking the undiagnosed pain was a perhaps a food allergy. My pain did go away for about 14 months without the gluten. When it came back is when I headed back to the doctor. My diet was already limited-no wheat, rye, barley or oats. It seems like just when I had the gluten-free way of life and substitutions down pat, I have to also take away tomatoes, salad dressings, some fruits, soda and chocolate. I remember thinking What is there to live for now? The irony of the soda and the chocolate being bad for IC was those were the comfort foods I would turn to when I was having a flare up (before I knew I had IC) and although I thought I was comforting myself, I was actually harming myself more. So there have been more issues with my diet-more restrictions on my life-than I ever wanted. I don’t want to live without soda and chocolate but I have to or I will keep getting worse. The only part of my diet that I have control over is to NOT eat the things that harm me.

I find that I have a bit of shame and/or embarrassment with having Interstitial Cystitis. I know I have no control over the disease nor how my body reacts to it. My shame or embarrassment comes when I sound like a broken record to those closest to me who ask how I’m feeling. I’m grateful, oohhh sooo grateful that my boyfriend is the man he is. He always asks me how I’m feeling and I love him for being so kind and caring. It’s difficult though, to have to say day after day during a flare up that no, I don’t feel any better. I find it ridiculous that my ten year old asks me how I’m doing or prefaces a request with ‘Mom, if you’re feeling good after school can we… (fill in simple desire of a ten year old here)’. Mom’s health should not be a concern of a boy who is ten. My dad, bless his heart, doesn’t understand IC at all. He doesn’t understand that there isn’t a cure and that everything I’m trying is only a band-aid. When he comes to my house and see’s that I have 5-6 medication bottles on the counter, he shakes his head and asks me when it’s going to stop. He’s an obese diabetic who is insulin dependent and has several other health issues that he takes medication for. I’d like to ask him when his medicinal madness is going to stop, but I don’t. I’m embarrassed that at 38 years old, I have this issue. I’ve tried to embrace it and move on as they say, but hiding my pain (lying about how I feel) only makes it worse.

I’ve found that the only control I have over IC is to reach out and try to find others who have it or others who suffer from chronic pain. I started this blog to help others but to also help myself. It’s a great sounding board. I read other peoples blogs who have IC and/or other chronic pain and I find myself agreeing and sympathizing with them. To further help myself feel less isolated, I searched the Internet for support groups in my area. There was one, One. Over a million people suffer from IC and I realize that not all of them live in Az but only one support group in my area? And it had meetings every other week during the day when I am at work. I searched meetup,com and didn’t much like what i saw there either. After giving it some thought, I really felt like the biggest trigger I have is isolation and maybe more people have the same issue so I did something totally out of character for me and started a meetup group of my own for those with IC and other chronic issues. Within two weeks I had 11 members (a few who also have IC Yay! Finally!) and most everyone said the same thing: I’ve been looking for months for a group where other people could understand me and what I’m going through,

I am a bit depressed today. I have been all week actually. I know it will pass eventually. I just have to take it day by day and try and be kind to myself. Please be kind to yourself today.

Hurry Up and Wait

I had my follow up appointment today. I was a bit nervous as to what the doctor was going to recommend since the bladder installations weren’t as successful as we had hoped.

I was also nervous due to a daycare situation that put me in the office five minutes late. Five minutes is late, yes, but not really that unusual nor extreme. When I arrived, I checked in with my least favorite person in the office. She took my last name and then said, “You’re a bit late, let me see if the doctor will still see you,”. Umm…what? She picked up the phone and spoke to the nurse. When she hung up she said, “The doctor will see you, but there are four people ahead of you and it’s going to be an hour wait.” I have really been making an effort to be nice to people lately but I will admit that for all the niceties I’ve put out there the past few weeks, I took them all back at that moment, “I’m sorry? Can you repeat that, please?” I asked. The fool must not have seen the look of death I was penetrating her skull with or she wouldn’t have repeated herself. “So, I’m getting pushed to the end of the line because I was five minutes late for an appointment? Do you realize that on the day of my first appointment I waited over an hour to see the doctor? I’ve also waited over 15 minute’s on other occasions as well, and yet, due to a situation beyond my control, I’m now being pushed to the end of the line for being five minutes late?”  I may or may not have been yelling for the whole waiting room to hear at this point. I have no shame. “We’ve had several people we’ve had to fit in today and you’re the last appointment,” she said. I just shook my head and sat down. An hour and several trips to the bathroom later I was taken to the exam room. Thirty minutes after that I was still waiting. I really like Dr. L and his nurse but sitting there getting more and more angry as the minutes ticked by, I was contemplating getting my hefty co-pay back and seeking help elsewhere. I decided to talk to the nurse before making any rash decisions and plus, I wanted to whine to someone. We had a loud conversation about the wait time outside the patients door where the doctor was. Well, okay, to honest, I was the loud one, she was nothing but understanding and accommodating. Don’t you just hate it when people kill you with kindness when you’re looking for a fight? She won because I found myself back inside the exam room and waited another five minutes or so before the doctor came in, calm but apologetic for the wait.

I discussed with Dr. L how I have had a few really good days but not enough to consider the bladder installations a success. I also told him that it seems I’m worse on Saturday and Sunday’s, the two days leading up to the next installation, He gave me two choices: I can learn how to put a catheter in at home and give myself the treatments twice a week for an undetermined amount of time or he can do a bladder hydrodistention and cystoscopy to look for Hunner’s Ulcer’s. With the latter, I would be in guaranteed pain for about two weeks following the procedure but eighty percent of patients are reported to notice a big difference after that time period. I don’t want to have to play doctor every  few days and do my own installations on an ongoing basis so I chose the hydrodistention, I know there aren’t any guarantee’s but I’m hoping to fall in the eighty percent that are success cases. I read in ‘The Interstitial Cystitis Survival Guide’ that the effects of this procedure may only last three months Of course I’m rooting for longer but…it’s been a long time since I’ve felt good for a week, much less a month and the possibility of three months makes it worth it for me to try. Dr. L also had his nurse show me how to insert the catheter into my urethra so in the future I could do the bladder installations at home, should I get a Flare Up. So, so glad I left my ten-year old son in the waiting room. She was showing me how to insert the catheter and medication while balancing a mirror so I could see my vagina. Although I’m familiar with my vagina, I’d never seen it reflected back at me like that, full stop. Add in the view of my Stay Puff Marshmallow Man thighs and the view of the underside of my food baby and I was horrified. I tried to listen, I really did but I really just wanted her to put the damn mirror down so I could get dressed. Whatever that nurse is being paid, I’m sure it’s not enough.

After that fun, Dr. L came in and told me that he’d kept me so late that his surgery scheduler had gone home for the night. He then apologized again for the wait. I explained to him that the reason I was so irritated was because I felt that I was getting the shaft for being five minutes late when he was late by an hour and a half. I told him that had his office called me to let me know that he was that far behind I would have felt like I had a choice to either come in later or reschedule, He agreed with me and said he’d talk to the office manager about the rude lady at the front desk as well as advising people ahead of time about the wait so they could reschedule if needed. Round trip I was gone three hours for an appointment that I should have been to and back in an hour. I should charge them for my time.