The hole.

I have been dealing with a really bad bout of depression lately. Unfortunately I still see ignorant and thoughtless reactions to it.

Just throwing my opinion out there but why can you no longer express emotions that are not sunshine and rainbows? I find most are extremely uncomfortable with pain. Emotional and physical. Why? Pain and hurt are normal emotions we all experience. It is quite absurd to me that human beings are so fearful of it. I don’t understand the fear of reaching out to someone who is hurting at all.

I know of many who experience depression and many of them keep silent. I understand why. People will go out of their way to avoid you and your ‘misery’. Also you’re stigmatized to high hell. Because that’s what people do to others with illness. I’ve been asked what I consider ridiculous questions. Talk to someone? Get help? Blah blah blah. I have had medication resistant depression for 35 years now. In that time frame I’ve talked to psychiatrists, psychologists, therapists and Doctors. Tried every medication that is safe for me. Crisis lines, friends and family. Nothing has ever gotten rid of it permanently.

If you have depression you have my sympathy and understanding. It’s like having a rabid angry monkey on your back all the time. And sometimes modern medicine and therapy does not help.

It is not your fault.

July 2014

I have a lot on my mind lately. First I want to address comments made on the most recent post I did on depression. I have had chronic medication resistant depression since I was about 6. So that is around 35 years of me living/dealing with it as best I can. To make any suggestion that I have not tried everything possible to get relief is preposterous. Also to imply that a suggestion will change the way I think, to me anyway is amusing. The best part of me is that very thing, my willingness to be myself. Your suggestions will fall on deaf ears. I am and will always be, my own person.

In the rheum department, I am quite frazzled. I fight like hell to claim the physical part of my life back and it’s not getting any better. I was told if I kept at it I would see results. I do not improve. Just lose more little abilities as time goes by. I keep moving hoping for more gain, only to be gripped by cramps and pain. My right leg has an attitude of its own now. If by chance it slips off the bed I can no longer make it lift unless I use my arms to physically move it. Brain says rise and the command is outright ignored. What the heck is that about? I cannot lift my own freakin leg? Come on now.

I need help to go shopping. Lifting 2lbs of sugar is now (to me anyway) an Olympic event. Using a knife? Let’s just say I don’t cut my meat anymore. Getting up off a chair? Hardy har har. I love being outside, but now I am paranoid of the sun because of biologics. I don’t need cancer thrown into the mix as well. I avoid interacting as much as possible. It’s no longer in my power to listen to anyone talk about how sitting still all day would make them crazy. Or that a desk job would kill them. Gotta be productive after all. Meanwhile I am listening to how much my life is worth to other people. Even if they don’t realize it. I don’t go out shopping much. I find it makes my anxiety haywire. For fear of tripping over unsupervised children, sick people hacking all over, pushy rude adults, lunatic antivax’rs and drivers who are in a rush.

I don’t do much in my opinion. Things that I could do in under an hour now take much longer. Frustrating way to have to live. Listening to people who aren’t sick makes me feel as though I do even less. I don’t live. I exist. Rheumatoid Arthritis stole a big part of me. I don’t recognize what’s left.

Your strength.

Good day eh. Living with chronic illness is tough but time and pain has taught me much about patience. Before being diagnosed with Rheumatoid Arthritis I always expected a quick fix to any ailment I had. After diagnosis I quickly found out that the medications for RA do not work fast at all and can take months to show any positive effects. I have over time learned that with supplements too and also what I eat. Before getting ill I loved my food, ate lots of carbs and other crap, didn’t care about my weight or if what I was eating was making me feel gross with GI issues. But since losing my appetite for the most part I make sure to (most of the time) to put good fuel in for my body to use. It has made a difference in how I feel overall and empowers me in a sense that I’m helping my body do the best it can. Chronic disease can make you feel weak and powerless, no known cause or cure, what ifs and should have dones. Dumping most of the junk and greasy food did nothing but help me out. The fact that RA is linked to heart disease makes it easier to choose healthy foods.

Depression is another ghost that haunts me ceaselessly, that is a ongoing battle here. I was depressed before RA, afterwards when the disease started taking its toll is when I really got lost in my own thoughts. Uncertainty along with pain, heavy duty meds and the rampant misconceptions about RA can put the toughest soul on edge. I sometimes wonder if people are judging me because of depression when there is nothing I can really do about it, I take what’s prescribed for my depression and have tried any new medications that became available. I have been asked if I was diagnosed properly,  I’m pretty sure what I’ve been dealing with since the age of seven is depression and unless you’re a Dr or other professional don’t bother wondering. This is the reason I keep to myself most of the time, I refuse to be patronized and am smarter than most realize.

If I’m not online that is a good thing, I would much rather be busy doing something other than on the net. I find it boring as hell now and mostly pop on to see my wonderful supportive friends and how they are doing. I love all of them ♥.

Cheers!

The week before…

This is the last week of my 30’s, I turn 40 next week. Its been a monumental spiritual growth year for me because of the big number I’m turning, I’ve changed what I will do in the future. Firstly, I’m leaving my past exactly where it is. No more reaching out to folks, I want very little of my time wasted on people who weren’t really friends/family with me to begin with. This was a problem I had, always being friendly accepting and chipper, no more. My ex husband is also banished to this mental behind the fence area, he hasn’t contacted his children in years and I’m done wasting any time thinking about him. Familiar BS, as in my family treating me like shit, no more. My intimate relationships are being held up to a higher standard too, I better see some good ole change or I’m out, tired of bullshit & promises broken. Sounds awful but I’ve actually freed myself from a lot of heartache doing this, this emotionally abused dirty doormat is done.

Rheumatology wise, I have gotten worse. Its been a gradual decline but I notice it. I am able to do less, have more pain and as a result more depression and anxiety because of the decline in my health. It wasnt an overnight omg things are worse kind of thing, just something I’ve noticed over the last year. I see other rheumies happily chatting about how many miles they ran today, all I can think about is how much my left hip hurts f I move any part of my body. If you are in the same situation as me you may have experienced blinding pain, where everything goes white and you yell because you can’t help it. That’s my hip, just one joint, brings me to tears. I really do wish I could move, movement is important to human beings and if you can’t get around something is lost, your psyche knows it.

My children are my joy, they do not understand how sick I am right now and that’s a good thing. They have time to figure out who/what they want to be. A quest in life that doesn’t need to be bogged down by worrying about Mom. They joy I have about watching and listening to them learn new things, new experiences, is priceless. Both are healthy, strong and focused. Most of all loving, what more could a parent want?

Hopes for a warm Autumn and less pain ~

Depression and woe…

I have to admit, my mental health has suffered greatly since my diagnosis of Rheumatoid Arthritis. I had battled depression & anxiety before I was diagnosed and now, well, it’s a lot worse. I have terrible bouts of hopelessness and feeling useless to the world which is now my reality. My son moved out May of ’12, I still sometimes feel that loss, I know kids can’t live at home forever but I was hoping for a little longer. My kids are/were my world and them growing up is another challenge I face in this life. It’s not easy to be a parent, kids change your life the moment you have them and it’s a constant evolution as they grow. That being said I don’t handle change well and I consider that a huge flaw in myself, it needs constant work. It honestly feels like I need to become someone completely different, am now a chronically ill mum bordering on empty nester. My daughter still lives with me and I enjoy all the time I can have with her, I know it will be hard when she decides to leave the nest. I hope between now and then I have better coping skills. As you could see by my last couple posts I’m not faring well on the mental health front, I do try my damnedest to not sink so low, it’s my mid-life crisis I guess, enhanced by RA & me feeling pretty useless compared to what I use to do. I took great pride in fixing and doing things on my own, I was self sufficient and tenacious, I got shit done. I feel like a shadow of my former self, I still get stuff done but not as much as I use to. And that irritates the hell out of me. Between being sick, fatigued and brain fogged to the point I forget as quick as the thought entered my head. I end up getting up from my chair and as soon as I stand up I forget why I stood up to begin with. I have to think hard on what I was going to do, it usually comes, eventually.

Mental illness still has plenty of stigma, when I was a teenager terms like anxiety/panic and depression did not exist. There was just something wrong with you and parents, medical professionals, teachers made sure you knew that. It was brutal going to school with these problems haunting me and no one cared, just got labelled as ‘off’ or ‘screwed up’ or my personal favourite, weird. When I got older and had kids it really spiralled out of control, hormones only exasperate mental illness. I finally at 21 yo got to see a mental health professional who helped me understand it was a disease and not a personality flaw. Most people don’t share their mental health issues and I know why, your ‘friends’ will make comments behind your back about how you’re fucked up in the head, if you havent experienced it you just don’t understand. I pray to God to relieve me of this burden that makes me break down so often, it is a disease and so far the meds available have not helped me much or turned me completely psycho, aggressive and just someone who is dangerous to others. antidepressants are powerful medications that work differently on everyone who uses them, I’m just curious as to why none of them are my knight in shining armour.

I’ll keep trying new medications as they become available because I’m too stubborn to give up hope that one day my mind will be eased and I can enjoy life. And stop focusing too much on what I can no longer do.
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Baselines

Today I was told by a medical professional (not my rheumy, go figure) about baseline pain and truthfully I was not happy about it. MD explained it as such, that what I’m feeling right now and possibly forever, is my baseline mark for pain. Meaning pain, pain and more pain. If I didn’t take tramadol or naproxen I’d be extremely miserable with pain, that I may flare and feel even WORSE. Sometimes those 2 are not enough and I still experience break through pain and currently the RA forecast is tendonitis with a good chance of random joint pain. The appointment left me feeling discouraged and beaten, I don’t want to be in pain for the rest of my life, however long that may be. MD  mentioned a pain clinic and I cringed, I am very unwilling to give up my mmj, to be substituted by narcotics. That may not sound good but sometimes the mmj bridges me over a really bad time and I can escape the current reality of RA leaving its scar on me. I’ll go to the clinic and talk to them there just to see if they can offer me anything, but I think it’s ridiculous that I have to make a special appointment JUST for the pain.

I spend too much time wishing I was somewhere else other than my body.

Eventually there is an answer…

I’ve wanted to talk about how life can spin you around and leave you in wonder. I had both of my kids young, was a parent of 2 by the time I was 20. At the time back then I was young, frazzled and didn’t know my arse from my elbow. I was a stay at home Mom, my husband worked a lot. I can remember those days of raccoon eyes, getting up early making 3 meals a day, most days anyway. My son developed bad asthma @ 4 yrs old and required quite a few trips to the ER in the middle of the night when the nebulizer & inhaler didn’t cut the mustard. In those days while doing dishes, cooking or cleaning I would ask God, I know there’s a reason I’m going through this so young and I hope one day you’ll share with me why. It was a tough time, never enough money, 2 bickering siblings (trust me they love each other) and the work never ended. If I needed groceries I had to walk and take 2 little children with me, the toy wagon earned its keep for pulling tired kids home whilst I was carried groceries. I walked everywhere, taking the kids to the park and then school etc. I had energy to burn and thought it would be that way for me until old age, I still didn’t have my answer. Time keeps going on no matter how much you’d like to slow it down, after an affair and yrs of trying to get past it, it was divorce time. It was what I needed to do to have a chance at a happy life, I tried my damnedest but 6 yrs post affair I was still miserable. I thought of suicide nightly, when the person laying next to you in bed is colder than a stranger to you, things need to change. I was terrified, scared shitless you name it but I made a choice and that was to live even if that meant poverty. I was fully motivated to go back to school and get a decent job that would have made me happy, being a health care aide of all things. My ex husband helped out with finances in the beginning but eventually cut back what he contributed, on advice of the ‘other woman’ I’m sure. Yup, that’s right 6 yrs after the dumb move that tanked my marriage he went and found that gutter trash again, just to hurt me and ended up in a relationship with her. I feel no sympathy for either, she ruined her marriage and mine, sucks to be you doesn’t it? My kids FATHER and I use that term loosely, has not contacted either of them in 2 yrs, birthdays, Xmas, nothing. It makes me sick to even think of it and I feel guilty for ever letting him reproduce with me, just goes to show after 17 yrs together I didn’t know him at all. It’s a part of my life I don’t miss at all but I do feel for my kids who do not deserve to be treated that way. I have enough love for them both. There are no excuses, both have their own phones and their ph #’s have not changed, but he can’t dial I guess. Anyways enough with that it was 5 yrs ago when I asked for the separation and got on with my life. I entered a gov’t program to learn career and life skills for abused women, for me it was emotional abuse others in the class had experienced different kinds of abuse from men. I was excited and determined to enjoy the rest of my life. For those who are not familiar, our provincial gov’t will provide financial support as long as you are going to your courses. Well with any high concentration of people there’s going to be germ parties and I noticed some of the girls would come in sick, no biggie I thought, just be neurotic about washing my hands etc. Unfortunately strep doesn’t listen to clean hands and I ended up with a nasty infection and was only able to get 1 day off of class, any more days and I would be cut off financially. So back to school I went because well lets face it, I have 2 kids at home and being cut off financially is just not Ok in that situation. I took a 2 week course of antibiotics and thought the worst was over.  Wrongo! I ended up getting sick again as the other ladies in the course kept coming in sick too for the same reason, we all had kids and being cut off was NOT an option. This time the infection was on the right side of my face, that’s right the whole side of my face was a microbe party, the infection eventually ruptured through my ear canal from the pressure the infection caused. There was no where for it to escape. I tell you what though, if you go into a medical clinic and tell them blood is coming out of your ear, you will get seen very fast by a Dr. Another round of antibiotics for me, strong ones too, and yet I still had to go to school under the same threat, come or you’ll be cut off. I kept going to school with my head pounding from the pressure of the infection and ended up making quite the scene with my ‘worker’.  In a nutshell I called them a bunch of assholes for making me come in this ill and for making anyone who was sick come in. I was then labelled unpredictable and aggressive for telling them the truth and not putting up with their bullshit. I kept up as long as I could but was never the same after the 2nd infection. I didn’t understand why I didn’t ‘feel better’ like I did before. My energetic self had become extremely lethargic & fatigued. My boyfriend at the time made this comment during my 2nd infection while I lay in bed with my head screaming if I moved it, ‘are you just going to lay in bed all day?’ my response was… why yes I am, the relationship ended shortly thereafter, I have never met anyone as unsympathetic as him. I was burned out after it all and silly me thought if I rested I would eventually get well. Nope, and there in 2009 when my kids were 17 & 16 I began my quest to find out what was wrong with me and in 2011 I got my answer, to both questions, the one where I asked God why I was a young parent and also why I never felt the same again…. When I got sick both kids were old enough to do for themselves and basically only required occasional guidance. Now I know why I had them young, because parenthood would have probably been denied to me as I got too sick to do much of anything anymore after the disease process began, and I’m very grateful for them, they are my rocks, my sunshine and my joy.

Next week I’m participating in a round table about Rheumatoid Arthritis, where I can bare my soul. Hope to be back blogging here the week after. 🙂