My Body is Tired And So Is My Mind

My body is tired and so is my mind. I’m tired of being sick. I’m tired of doing a body check each morning when I wake up to see if I’m well enough to function each day. It seems like I get one issue temporarily taken care of and another issue appears.These past two weeks are a good example. October 14th I had a hydrodistention to hopefully relieve some of my IC symptoms. I knew going into it that I would most likely have 1-2 weeks of a flare up afterward which did in fact happen. I woke up on October 24th feeling better than I had in months. I even blogged about it (A Goodnight’s Sleep). The next day I woke up and wasn’t experiencing any bladder issues but had a terrible headache for the greater part of the day. Wednesday I woke up and my headache was gone and I wasn’t experiencing bladder pain, but I was having IBS issues due to the over the counter pain meds I’d used the day before to try and combat the headache. By Thursday night, my IC was flaring up and I had to do a bladder instillation at home. The flare continued to rear it’s ugly head and on Sunday I had to do another bladder instillation. Monday I continued to not feel well which led to Tuesday night’s feeling of being on fire. Today I woke up in pain. Was it a flare up? No. Was it a migraine? No. IBS? No. Today my pain was related to female issues which may or may not be ovarian cysts. I had a partial hysterectomy in 2008, leaving my ovaries intact to avoid taking hormones and pushing my body into instant menopause. While I no longer suffer through terrible periods, I do experience pain when I ovulate. It seems to happen every other month but is sometimes unpredictable. I do not have the proper pain meds to help me through this. The pain meds I do have barely touch the pain. The pain, for lack of a better way to describe it, feels like labor pains waxing and waning throughout the day. I made it through the day but I cannot tell you how. There was little to nothing I could do to find relief. A hot bath helped for a little while but the pain returned. Ditto the heating pad. I couldn’t find a comfortable position to lay in and sleep escaped me.

My body is tired and so is my mind. I’m tired of feeling like I’m failing in every area of my life. Today I was reduced to picking my son up from school in my pajamas because I couldn’t be bothered to get dressed. Thankfully it looks more like a sweatsuit than pajamas, however it was the first thing he commented on when he got in the car. I think I might have brushed my teeth and hair today but I can’t be sure. When we got home, I cuddled up to my heating pad and left him to do his homework on his own. I think he had a good day at school but I didn’t feel much like playing 20 questions and he seemed fine. I’m clearly Mother of the Year. I was in bed the rest of the night until about an hour ago when my boyfriend came to bed. He’s another one I feel like I’m failing. He deserves someone who is actually normal. Someone who gets the occasional cold or flu but is healthy for the most part. Tonight we talked for about 15 minutes while laying in bed and we didn’t even see each others face. I couldn’t tell you what he and my son had for dinner or if they even ate. I can tell you that he finished the laundry as I see it all laid out nicely over the back of the couch. Laundry that was in the washer and dryer all day that I couldn’t be bothered to do. I can’t tell you the last time I had a normal conversation with either of my parents. All phone calls and visits seem to revolve around poor health-either mine or theirs. I’m failing myself on so many levels too. I’ve tried to be kinder to myself but as you know, that’s not always easy. I was enrolled in an online algebra class and held a steady “D” average for the first four weeks of class but had to drop it because of health issues. Math is the only thing holding me back from getting a college degree. I’m stuck in a job that pays well and is secure but after almost ten years I’m burnt out and would like to have a different career. I can’t change jobs even if I could find one that paid as well because I obviously need the medical benefits as well as the FMLA.

My body is tired and so is my mind. There’s a low grade depression that accompanies chronic pain. There are days when I wish I had an on-call counselor to talk me through it all-to whisper reassuring words in my ear. Through my medical insurance at work there is a health program wherein if we took a health assessment we will have slightly lower rates for six months. I need money like everyone else so I took the health assessment. Afterwards, I had to fill out an online survey, which I did as part of the agreement to lower my rates. Little did I know, that doing so would give me the opportunity to have my very own health coach. She’s never bothered to call me but did send me an email asking the same health assessment questions and a few more questions about my medical history. I was really looking for help so I told her about my overlapping conditions and how much pain I am in on a daily basis, my low grade depression, and that I fell off the non-smoking wagon although I try and do better each day. Out of all the things I told her I needed help with or needed help dealing with, which do you think she zeroed in on? Smoking. Have I set a date to quit. I was so disgusted with her I didn’t even reply. I wanted to write back and tell her that if I could get rid of or lower the frequency of my other issues, perhaps I wouldn’t find the need to smoke. I give up. Yes, smoking is bad. It’s especially bad for those with IC issues, however some days it’s the only way to make it through the day.

My body is tired and so is my mind. I’m sure I have adrenal fatigue. Having chronic pain has really taken it’s toll on both my body and mind. I rarely feel rested. I crave sugar all the damn time-probably as a quick pick me up since I can’t have caffeine. I’m worn out. Perhaps my body would react differently if it could catch a break. There’s no down time. Even the one day last month when I felt really good part of me was worrying about what the next minute, next hour, next day would bring. I know I wasn’t always this way. I used to be pretty happy go lucky with the occasional migraine thrown in to keep my honest. Then gradually things started progressing to where I am today. I can’t even contribute my diminished health to old age as I’m only 38. I’m not sure I can handle old age if my body is already beginning to give up on me.

My body is tired and so is my mind. I’m tired of of being on this roller coaster of pain. It makes me want to stomp my feet and yell ‘It’s not fair!’. It really isn’t fair. It’s not fair that in the past month alone I’ve had one really good no pain at all day. It’s not fair that once I get one issue under control another issue appears. It’s not fair that my family is “short changed” due my health issues. It’s not fair that I’m complaining like I am as I know there are those who are worse off than I am. People with a lot more pain and many, many more issues. People who have suffered from chronic pain for many, many more years than I have. People who even perhaps have terminal illness. My heart goes out to you. It really does.

My body is tired and so is my mind…

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.