Tag Archives: therapy

What it is like

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Social media can truly be a miracle sometimes. When asked a question you have time to think without your facial expression giving it away or making it awkward. It is a small thing but one I find very helpful. Recently I was talking with someone who had just gotten diagnosed with a chronic pain illness. It would be a matter of constantly managing it. She asked me, “What is it like? How do you do it? I just can’t imagine ever being okay with this. It is so distracting and I absolutely hate it.”  I agreed. I still feel all of that. It hasn’t gone away, more like it is just simmering.
Simmering, yeah that is a good description. Let’s go with that. It is a lot like cooking a meal that will never ever be done but you know it will be worth it.  It is a labor intensive meal like Thanksgiving or Christmas dinner. It is like you have four pots on the stove and something in the oven.
One pot is emotional/mental health. One pot is physical health. One pot is spiritual. One pot is work and in the oven is the family. Just like in cooking you have to keep adding ingredients and it can simmer on its own for a bit but it needs a stir now and then. Every so often, and often when you feel you have it the most under control, all the pots start boiling over. Sometimes some smoke even starts coming from the oven.  Normally though the boiling over happens one at a time and you can handle it and move on. You take a taste every once in a while to check on it as a means to see how it is coming along. Sometimes tasting can tell you if there is a problem. Sometimes it tastes good but really something has started to go bad you just can’t taste it yet.
Then there is the other problem. Suddenly an ingredient is no longer working. It is no longer bonding with everything in the pot to make it one solid thing. It could be that self-care has fallen off your radar. It could be that you cut back on exercise. It could be that you thought it was self-care by sleeping in on Sunday, but really you hadn’t done anything else for spiritual health so it really wasn’t self-care. It could be that you cut back on exercise–physical health–for good reason, yet it negatively affected another part of physical health, vitamin D.  Sometimes you find an ingredient you thought would work well actually doesn’t and you have to take it back out of the pot.  Sometimes while you are disposing of that ingredient another pot starts to boil over. Don’t forget you changed the dynamics of that one pot you took the ingredient out of so you will need to adjust the temperature!
Yes, but that is essentially life isn’t it? You have to add the chronic pain as well. You are right about that, we are handling that as well. Hopefully each of the pots and the oven are helping that. Chronic pain though, that is the tricky element. That is the part that makes the ingredients suddenly stop working so well. That is the part that says, “that worked for a while, but now, not so much.”
On the really good days the chronic pain is like the background noise of the dishwasher going. You hear it, you know it’s going on. You just try not to pay too much attention to it until it dings. When it dings that is when you find out that suddenly the soap you were using didn’t work or something got gummed up in the hose and the rinse cycle didn’t go off. Sometimes there is not even running water to wash the dishes by hand while all the other stuff is happening. Chronic pain does that. You find something and your brain says, “hey, thanks this is really working,” so it starts focusing on something else more pressing.
So essential pain management just becomes part of your routine. I can’t tell you when it happens, just that it does. I can tell you that I am never okay with it. Chronic pain just adds to depression and anxiety because you are constantly longing for what you cannot have. Things you used to do are no longer an option. It took quite a bit of looking around trying to figure out what I wanted to do. It took even longer for me to realize that what I want to do will always be in flux. Some days I am overwhelmed that my health issues are only going to get worse as I age  because they are degenerative. Degeneration is already an issue as you get older. It is just sped up in my case.
Some days though, I don’t care. I am enjoying the moment for all that it is. Those are the days that make all the above worth it. They balance out all the bad days where all the pots are boiling over there is smoke coming from the oven and the dishwasher just plain won’t work.
It takes a lot of self-analysis to make those good days happen. In the beginning, I fought that. Don’t look too closely. Don’t fix what isn’t broken. If it is hanging on by a thread and still working, it isn’t broken. There comes a time though that it just doesn’t work any more. Nothing about it works and self-analysis is forced on you. You have to sit down and look at it. You have to acknowledge the problem.
Slowly you realize that sometimes you could be a bit more proactive. For a time that is all it is. A thought. You don’t act on it. Then one day you do something proactive and you see it pan out that it fixed a problem you didn’t even realize was coming. I am not saying that before you know it you are doing this all the time. I am not. I know I am not. I know there is always room for improvement.
At the end of the day, that is what I tell myself. I think about the things I handled proactively and the things I didn’t respond to that I should have. Tomorrow. Tomorrow I tell myself, we will try again. We are not going to try harder because we are already trying our hardest. We will just simply try again. I can tell you that if you keep telling yourself this each night you will believe it. I can’t tell you how long that will take. It could take months. It’s harsh to think that, Months! I can’t take months! I need a fix now! So take a deep breath and remind yourself that slow and steady cooks the meal.

 

 

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A right proper pity party or Ten Things of Thankful?

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I could sit here and think of all the things that should have happened this past week, but didn’t. I could throw myself a downright proper pity party.I probably could even make it coincide with the regular Florida summer afternoon storms. After all what pity party is complete without dark clouds and rain?  I could do that or I could change my thoughts. I could focus on what DID happen. I could just let go of those things that didn’t happen. I could let the negative things slip through my fingers like sand and hold on tight to the positive nuggets that dotted my week. I could reach up and bat away those dark clouds and find the light. I think I will do that instead, that sounds so much more lovelier. So off I go to sift through my week:

1. Raise

Hubby got a raise again. This was his yearly review raise. Still it helps!

2 Hair to locks of love

I have decided to grow my hair until December and then donate to locks for love. This made me very happy with what I am currently doing with my hair. I have been debating getting it cut.

3 Successful hair cut

I think it was two years ago now , my daughter had a full out panic attack when she was getting her hair cut. Ever since then she is a mess whenever I brought up the subject. I finally reached my limit and was like no its time. I am fairly certain it has been over a year. No panic attack today!!!!

 

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4 Awesome nature trail discovered

On Monday we went north a bit to discover this sustainable village. The website and the presentation I watched made it seem like it was a good idea. Instead it was such a disappointment.  HOWEVER, I had also discovered a short nature trail so we decided to do that as well. I am glad we did. It was such a neat little place!

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5 Amazing art work completed by the kid Henri Matisse

I am truly impressed by her artwork. It was a free class hosted by the Library through a teaching artist association.

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6 Groceries!!!

Okay seems silly but still. Some we were given and even though it wasn’t stuff I normally would buy it also wasn’t wasted. I mean what a shame to have to use the bacon right away. Oh darn.

7 Extra cleaning job

I unexpectedly got an extra cleaning job. This past week was super tight because it was a rent week so it was extra helpful.

8 Big changes at Church. Silver lining

Ah this is one of those things. You know change has to happen. You know it does happen. However I don’t always like when it happens. Still this is probably the most active I have ever been in a church. It is also the one I have felt most free to be me in. Unitarian Universalists, I wish I had found it when I was in my teens and twenties. However silver linings are important to find in the middle of huge changes. I won’t say there are not any, because I know there are. I am just having a hard time right now finding them. In theory the changes sounded good, in reality they kind of suck. I am however determined to stay the course and investigate what new things are in store for our church.

9 Synched calendars!! Finally

 

Okay so this is actually quite a big deal. I didn’t do it earlier and it recently bit me in the bum. I realized I was double booked for things. One fun and learning and one a responsibility and one I can’t shirk. I sat down last night and synched my home calendar with my phone calendar all the way until the end of July. Now here is hoping our fun classes and my meetings won’t clash again. Oh and I double checked the locations so hopefully we won’t be showing up at the wrong library to any of these classes either!

10  at least one job applied to every day

I am not happy that I haven’t found a job. I am happy though that I have found a minimum of one job every single day this week to apply to. A few of the days I applied to three or four jobs.

 

HA! I found ten things I am thankful for this week. Can you? I bet you can if you really look with a different perspective from what you have now!

The truth about flares

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I often get accused of being a chronic complainer.I don’t post how i feel for sympathy. Sometimes just seeing it in black and white helps me.  I just need to vomit it all out so I can move on. Its cathartic. This is not to say I don’t appreciate the comments.

Chronic illness is an asshole. Sometimes it makes me seem like an asshole. Most of the time in a flare I feel like I am being an asshole.
When I am resting I still feel like I am being lazy. I still think you are thinking I am being lazy. You can tell me all you want that you are not. When I have to cancel plans there is a part of me that feels I am just making an excuse. I know, if I went the pain would magnify. I know it.

Chronic illness makes your anxiety triple. Anxiety is an asshole too. Anxiety over what I do get done in a day. Anxiety over what I don’t get done in a day. Anxiety over what others are thinking about what I did today. Anxiety often makes me feel like I am being a complete wimp.
I feel ridiculous saying my skin hurts. Or any other body part that is acting up.
I feel like it’s an excuse even when I know the pain is too much to push through.Dishes have to get done ,I know that. It would seem standing doing dishes should be no big deal. Standing is a lot more work then we realize. There is a reason it takes babies so long to learn. There is a reason they get tired easily from it. If I do push myself my hips,knees and ankles blossom into painful bursts. If I keep pushing my hands will start to cramp up.  Have you ever tried to wash a plate and had your hand cramp. Most times I break the plate. It would make sense to stop doing the dishes before that happens. That is the thing though, the frustration, you don’t want to stop.

I am just as frustrated about my body flaring as you are, if not more. My brain is still functioning and often going a thousand miles a minute. I am thinking of all the things I need to get done. The things I should be doing. It is even more frustrating to feel somewhat okay while laying down yet, within five minutes of being up doing things, you are exhausted and often shaking.

I have a tendency to emotionally eat. Yes I know I shouldn’t eat that but sometimes emotions need to be fed. I do try very hard to balance my emotional eating with healthy eating. I do aim for that balance. I know full well I will pay for it later. Sometimes I feel it is worth it. Sometimes later when I am paying for it, I think I was being stupid. Just because I ate it yesterday or last week or last month doesn’t mean I can eat it during a flare. I could have eaten it yesterday and today it makes me want to vomit. I could have had it at lunch and my stomach tolerated it just fine. Eating it with dinner, not so much. It can be as small as garlic or lemon or as big as chicken. There is often no rhyme or reason to it.

So there it is the cold hard truth about flares and complaining.

Why is there no in between sane and not sane?

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Recently a friend of mine was feeling off. She called her therapist and after speaking with her therapist it was decided she should go to the mental health hospital. She was not suicidal. She was sent away. She was essentially sent away because she was not suicidal so therefore fine. We were discussing how this is so vastly unfair. Further reflection led me to say, “This only goes to further feed the mental health stigma. You are either sane or not sane. There is no in between.” I know most of that boils down to funding. I am not finding fault with the mental health hospital itself. It is the system. It needs to start from the highest level. Government needs to start stating openly, mental health is just as important as physical health.

When I worked in probation I saw how broken the system was. I saw how many probationers were really mental health clients that could not receive help. Most often I heard they will give me medications but they won’t give me therapy. This in turns fuels the stigma that there is a “magic” pill that fixes the mental imbalance. While medications are part of the answer. They are not the only answer.

Mental health tends to be more like a puzzle. The problem is it is not just one puzzle. It is a puzzle based on each individual. Finding out how that person’s puzzle can be put back together , is the hard part. It also doesn’t help that you can’t glue the puzzle together so it stays together. It can and often does fall apart and has to be reconfigured. This makes it frustrating not only to the Doctor treating it but, also the person dealing with it. It is easy for the person dealing with the mental health issue to think there is nothing wrong. The system really does encourage that. I know this all too well.

I am estranged from my Mother and youngest sister. I  had already been in therapy for  four years by the time the ties were cut. When it was pointed out that I was relying on medication in order for me to deal with this situation I knew something had to be done. If nothing else this showed me how toxic it was for me. Not just emotionally, physically as well. No medication is completely side effect free.  I had chronic pain issues on top of this. My kidneys and liver were not happy.  Where as physical abuse is so much more obvious, Emotional abuse is much more subtle. Verbal abuse as well. We tend to tolerate a lot more from close friends and family than we ever would others. It came time though for me to love myself more. I am not going to get into the specifics. It is not for public consumption. The details don’t really matter to others.I often reflect on the situation. I do hear things here and there. What I hear still convinces me it was the right decision. We need to realize that emotional physical verbal and social all tie together in our health. They can not be out of balance.

Three years later and my kidneys and liver are back within normal ranges. I am on much less medication. I am aware I won’t get completely medication free. I understand it is a chemical imbalance in part. I am also completely okay with the fact that I will probably be in and out of therapy for the rest of my life. I don’t understand so much of the stigma around admitting to a mental illness. I don’t understand admitting an imbalance and working to improve that imbalance being a weakness. It is something that has to start from the top levels of our government AND from the bottom level of every day interactions with people. It is way past time for us to realize this.

I struggled with this when I was on medicaid and dependent on the system for my mental health care. Luckily I had years of private insurance therapy first. I knew what I did need and what I didn’t. Still they tried over medicating me. I won’t lie, I did go along with it for a bit. It took me a while to realize that over medicating is just as bad as under medicating. It is a balance. The problem is when you are in the middle of psychosis and are over medicated, it is really hard to realize that.  It is easy to see why people go off medication. Over medication made me feel like a zombie. It increased my brain fog. It made my mood swings even more unpredictable.  I was lucky that we were able to get back on insurance. I was lucky that I found a physician who listened to me. Who was willing to fine tune medications to the right mixture.  Having gone through the medicaid system I know how hard it is. I understand how broken the system is.  I had to go off all my medications for two months because I was not suicidal. They didn’t know how long it would take me to get through the waiting list. I was just needing maintenance.  The problem is if medication is part of your maintenance and you are denied that medication, you are no longer maintaining.

We need to fix our broken system in all the areas, not just physical health. We need to let people know there IS an in between. There is a work in progress level. That mental health is so much more than sane and not sane.

The real cost of being sick

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 There is so much more to chronic illness expenses than doctors appointments, tests, and prescriptions. Those are the more obvious expenses. Those are costs that you can control to a certain extent with the type of health insurance  you have. These are some of the less obvious costs…

Lets start with diet.  I don’t mean the kind of diet you go on when you want to lose weight. I mean the kind of diet that completely changes how you eat. I won’t say that I avoid trigger foods altogether–I am human. I know [emotional? you just said “eating” which is good!] eating it is not the best idea, but sometimes it’s emotional therapy.

Many times the prescriptions that people with chronic illness take can cause digestion and gastrointestinal  issues as well. What that means for me is I can not rely on a good quality multivitamin to catch any lapse in diet. A good quality highly absorbable multivitamin can cost fifteen dollars or more per month.

The reality is fresh fruits and vegetables cost almost twice as much as canned or frozen fruit. Why is this an issue? Well this ties into the digestion issues. Many people with chronic illness cannot process the additives, extra sugar, processed sugar, and preservatives as well. This makes canned and frozen fruits not the best choice. I am not saying I never get these but its not my preferred choice, and I always have more issues after eating these foods.  I am lucky in my diet the only issues I have are preservatives, additives, lactose and corn.  This still makes it difficult, it could be so much worse.

While my family normally tend to be fairly healthy eating to begin with even before I got sick, it’s not even a choice now. It is how we have to live.  This is not necessarily a bad thing, just another hidden cost people don’t think about. I did do about six weeks of juicing with fresh fruits and veggies. It worked really well, and I did feel better. It cost me  about forty dollars a week. When it came down to it, I had to start focusing on making sure my family had enough groceries for the week and not just enough to juice.  Its great to juice or make smoothies, but I still have to feed my family.

Next we have what I like to call my toolbox. A list of things that you can do to help alleviate some of the chronic pain that goes along with chronic illness. Oh just take an Epsom salt bath every night. I use Icy hot and love it. Pick up some Tiger Balm. Pain patches, supplements, and exercise are what helps me.  It is one thing to say that but here is the hidden cost.  To be effective you need to use at least a cup of Epsom salt per bath, while recommended amount is two. At one point in order to take a just plain Epsom salt bath every night I was paying roughly fifteen dollars for salt each week.  This is just plain epsom salts. This was not for the ones that have added benefits of lavender or menthol or eucalyptus, rosemary or ginger added to them.  Not to mention its not like I can just jump into the bath tub any old time I need to.

Then you also pick up a variation of rubs, creams, and ointments. Each of these run from as cheap as five dollars up to twenty  bucks each. Since we often use them multiple times daily, we might get a week or two out of a tube or bottle–if we are lucky. Pain patches, however wonderful they are, are one short use and they are done. Five dollars for five patches that if you stretch it can last you four days. It gets to a point that you can easily be spending fifty to sixty dollars a month on these kinds of things.

There are some more natural remedies that you can take to help bolster the prescriptions that often you have to take. I have gone off a lot of prescription medications and have gotten down to my bare essentials so to speak. My bare essential prescription cost is about  [$150] {or} [One hundred fifty] every three months.  It was almost that a month at one point in time.

It is easy to say “go pick up a supplement.” Looking at quality matters a lot here. Turmeric, which is great for chronic pain, is a minimum of ten dollars for a month supply. Then often people in chronic pain use Magnesium which can be relatively cheap, again the type and quality counts here. The one I have had the best success with is fifteen dollars a month. I use a strong omega three supplement as I have both heart issues and mental health issues, and that helps with both.  I also take Melatonin as opposed to a prescription sleeping aid.  It is not hard for me to spend fifty dollars or more on supplements [a month? how long?]. Fifty dollars is where I am at right now with just the basic cannot-do-without supplements.

This is really just the first layer of unseen costs of being chronically ill.  This is not even taking into consideration that the kind of mattress you sleep on matters, keeping shoes fresh and supportive by changing them out every three to six months.

This does not even take into consideration that people that have chronic illnesses tend to not be able to work but yet not meet the terms for disability through the government.  I am lucky I have decent insurance and my costs are low comparatively speaking. Shockingly enough, to many the answer is not through medicaid, I actually paid more and struggled more going through the medicaid system.  The stress the system puts you through to jump through the hoops to get what you need……it’s unbelievable.  Even with the good insurance we have now my out of pocket expenses are anywhere from 100-150 a month. This is not including prescriptions that are significantly cheaper with insurance.  This is what I have it boiled down to as essentials. It could easily be twice that.

I often deal with people who are very flippant about my chronic issues because they are not visible nor are they the same from day-to-day.  To date my diagnoses are: Myofascial Pain Syndrome; Chronic Fatigue Syndrome; Fibromyalgia; Degenerative Disc Disease of cervical, thoracic , and lumbar spine; Irritable Bowl Syndrome triggered by a corn intolerance; Supra-Ventricular Tachycardia;  Raynauds; malabsorption of Vitamin D, Potassium, and Magnesium; severe outdoor allergies which borders on allergic asthma; OCD with tendrils of ADD.

I don’t look sick. I don’t like to talk about being sick or what I can or can’t do. If I am discussing it in detail with you, I trust you a lot.  I am not willing to continually prove my conditions to people over and over. What would I do to do that? Carry X-rays and MRI reports and blood test results around with me constantly? I am not being lazy or taking the easy way out and yes I can read that in your eyes. After dealing with Doctor after Doctor after Doctor who did not believe me, I can tell exactly who does and doesn’t believe me. Some of the disbelief comes because I was super active and really did a lot one day. The next day it takes everything I have to get out of bed. I am paying for being so active. When you have a kid, you tend to push yourself to do more, for them.

I have gone through the disability process with the government. Essentially they believe I have the issues I have but because I can parent to some extent and function to some extent, I am not disabled. What I was doing when I was working and trying to parent was not functioning.  I was a mess. I could not enjoy any time with my daughter. I focused on getting through the day til I could medicate and hopefully sleep. I had no quality of life, not to mention the immense damage to my organs that the prescriptions were doing. It has taken two years off of three medications to get my liver and kidney functions to somewhat normal levels. TWO YEARS.

It has been a long hard road to get my health back to some extent.  We are lucky that we have family and close  friends who understand and help us. We are functioning, barely, at a fourth of what we were earning when both of us worked full time, and this is with my husband working two jobs to help support us. If anything ever happened and he could not work, we would be completely screwed.

************************************** some exciting news in store***********************************************************

 

Below is a brief outline of the campaign, which illustrates what we’re trying to achieve and how people living with chronic conditions can help.

 

Via the “Hidden Cost of Chronic Illness” campaign, Debt Advisory Centre aims to raise awareness and visibility of the challenges faced by those living with chronic and ‘invisible’ conditions. We’re also conducting our own research into perceptions of chronic illness, especially in relation to the work environment.

 

 

We’d like to know the following about the patients that use your services;

 

  • How long they’ve had their condition.
  • What their specific condition is.
  • How it affects them (professionally, socially, emotionally)
  • What things they have to purchase in relation to their condition.
  • What other financial disadvantages they face.
  • Roughly how much they spend per month in relation to their condition.
  • How they feel others perceive their condition (employers, friends, strangers)

We’re keen to gather as much user-generated content as possible and welcome contributions via email and video.

 

Once we’ve gathered the information, we’ll combine it with research we’ve conducted ourselves and research supplied by other organisations ourselves. We’ll then be distributing and sharing those findings with the media.

 

Patients can find out more by visiting the campaign page http://www.debtadvisorycentre.co.uk/advice/Illness-and-Debt-What-are-the-Hidden-Costs-of-Chronic-Illness-0-4163-0.html

 

Please note, if you aren’t already aware, that Debt Advisory Centre is a fee-charging debt solutions provider and not a charity.

 

Don’t be so hard

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It occurred to me today that I have been unreasonably hard on myself. I have been wondering why things I used to be able to do are such a struggle lately. It was only in discussion over some of this with a friend that I realized the difference was medication. I am not on prednisone, soma and Lortab. That I have taken steps that means I can do less but will live longer, and healthier.

When I went off the medications it was not by choice. I was sure I was going to be back right on them as soon as I found a doctor that would listen. Between the weight gain and how sedentary my life had become, I knew I needed to make changes. I just didn’t want to think about it too closely.I dealt with it slowly and piece by piece.

Sometimes just realizing that you are being unreasonably hard on yourself, that allows you to relax a little. I am going to try and focus more on what I have done each day than what I have not done. I am going to try and remember that being off those medications is a good thing and that it just makes self care even more important.

I have realized that I have depended on certain activities to relieve stress. The problem is they are not relieving stress. It took me a while to notice this. It is time to switch up some of my self care things.  Summer is coming. Well really in Florida Summer never leaves but the kid is out of school in a week.  There is going to be more variety. More embracing what and who we are. There is just going to be more.

I know I have said this in the past. I have done it in the past. Each time I am a step closer to where I want to be. I just have to remember that and not get frustrated that it feels like I am back where I started. I am not. I know that I am not when I really stop and look back.  Its a process. Sometimes its the process that is frustrating. Sometimes just acknowledging that makes it a difference. Gives us a fresh perspective and renewed motivation.

Tomorrow I turn a year older. Here is to understanding the process and embracing it all, the good  and the bad!

Battling depression is hard work

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Depression is so tricky and tempting. Once it has it’s grip, it does not like to let go.

It is this soft voice that says ” it is so much easier to just stick with what we know.”

It lulls us into thinking it is okay to always want to escape reality…into our dreams…into books…into anything so that we don’t have to confront the feelings and deal with them.

Little do the people around us know or realize that just getting out of bed was a fifteen minute mental battle. The pro’s and con’s of getting out of bed, of deciding to confront the day instead of burrowing back under the covers. We have spent energy on this mental battle before we even get out of bed.

Medication helps, sometimes, but it is not going to do the work for you.  It is not going to force you to get out of bed. It is not going to force you to be social. It is not going to force you to laugh. It helps clear the fog so that you CAN do those things.  In the end though you still have to actually do it. You have to be the louder voice, not the depression. Sometimes I have forced myself to go. Sometimes just being there is enough, I start to enjoy myself. Other times, not so much. I got back and collapsed into bed, but I did it. It is easier and easier to keep doing things, to keep pushing the comfort zone. It is also okay to still allow yourself some moping time, some resting time, some take a deep breath we are doing it time.

For years I battled it with the help of psychologist. It was helpful. It was easier. It however got the point that I needed to step out and do, not talk. I stopped going to her and put into action some of the things that I needed to do. It helped. It worked. Then it was back. Medications change and It is harder to battle it. The cycle changes but it is always cycling. It is a battle that in order to stay on top of you can’t stop thinking about it.

I am back to figuring out what I need to do for therapy again. Do I pull out the depression CBT handbook? Do I go back to a different therapist as mine retired?

Then I go back to feeling frustrated because here we are , back at this. I do well on my own for a while. Sometimes I do well for months, sometimes years. Then I begin to get tolerant to the medication, or the therapy, or even more fun, both.  It is there in the quiet moments. In the in between functioning moments, like sitting in carline to pick up the kid. The quiet moments before falling asleep at night. It is a nightly battle to say, no I AM good enough. I AM making progress. Baby steps are still progress.

I try to remember that the depression is always there. It may be laying quietly and not doing much, it is not gone. It is how it lulls you into thinking its gone. Then it rears up and the cloud is back. It is even possibly raining again.  I think part of the reason I am so aware of it is because I also have fibromyalgia. The fatigue and muscle aches and other physical manifestations of Depression are also present with Fibromyalgia. So even when I am dealing with a very low level of depression, I have the more physical stuff all the time.

It is a tiring ongoing battle but it is worth it. It is worth keeping on top of. If we don’t we loose all ground that have been making progress. I find thinking about it as not completely gone helps me stay on medications and be mindful of where I am at mentally speaking.

The quiet grief

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It is so subtle.

It is just a little niggle in the back of your heart.

People talk about a ticking biological clock but, who thinks it is still ticking after you have had a baby? It didn’t even occur to me that is what I was feeling.

After all the years of infertility, after the miscarriages you would think I would recognize it.

People talk about aching ovaries, but they don’t tell you it is your heart that aches.

My biological clock is screaming tick tick tick tick. It has me thinking about what a second child would look like. Would this baby be such a complete blend of both my husband and I as our daughter is? Would this baby have blue eyes I could get lost in like my husband and daughter do? What kind of bond would my daughter have with her newest sibling?

My brain tells me that it is not responsible to get pregnant any time soon. Financially or even medically,probably both,  it would be a disaster.

I have said I am done having kids for awhile. I mean it. I know in my brain that we are done.

Then a friend is pregnant, or someone has a baby.

I thought I had worked through this and was on my way to I don’t know….. worrying or grieving about something else. When all of a sudden my biological clock says HELLO, I want a baby!  It just adds a little melancholy to otherwise sweet moments snuggling others babies.

It is only made worse when people ask when are you having another one. When someone complains about how chaotic it is having more than one kid. When someone asks how many kids I wanted. Just a little nudge, just a small twist. Its like a barb that is lodged in your heart and words can just nudge it just a bit, make you wince.

It is not something I bring up often because I am truly and completely happy for my friends with new babies. I am completely thrilled with hearing all the details of pregnancy and breastfeeding and all the cute little newborn things. I don’t want anyone to think they can’t tell me that stuff. I was at that place once, when we were dealing with infertility. I don’t want that strain on my friendships.

It really is this quiet grief, a grief of what can not be.

It seems in my blog reading I keep clicking on others, others about rainbow babies, and infertility and new babies. Not to say I am not happy for them, Not to say I don’t get the warm fuzzy feelings that are meant to be conveyed. Its like that small smile of happiness that doesn’t quite chase the sadness from your eyes.

I debated even publishing this. I thought well I wrote it, I got it out, so maybe now it won’t be so heavy on me. Then I thought about my readers, others who struggle with multiple chronic illnesses at a young age that know they can’t or shouldn’t have more babies.  It is a personal look deep down but so much of what we deal with is super personal. So here it is.

A lot going on in there

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On the tail edges of my cymbalta withdrawl, I have been completely off of it for four days. I will be starting prozac on monday. All that to say, I have not been able to handle my normal amount of stimulation. I can’t have the tv on while I am on the laptop while also sending texts, while having at least ten tabs open on the laptop. I have been reading more. Sometimes it is my current books that I am reading,yes books as in plural..I have three going right now. Sometimes it is blogs. I have taken the time to go a bit slower. Really digest what each blog I read is saying. You know I have been really big on #Depressedbutdressed in collaboration with It’s not my workout.  For once I have been taking the time to follow embedded links. It is where I stumbled upon One Little Word (http://aliedwards.com/shop/one-little-word-2014). I have been thinking and reading other blogs that have posted their word.

What would my word be?

Sorting through words that describe me, or that I want to focus on, or that I want to be better at, I come across these.

Love

Honesty

Integrity

Courage

Thrive

Inspiring

Starting to break these down into what I could do with them on my own since I can’t pay for the workshop right now, it was interesting to me. Even a little eye opening.

Love being the first one. Without love I am nothing. If I don’t love myself I can’t love others. Love must coat and cover everything I do without smothering at the same time. There is one song that I will always always always sing out at the top of my lungs when it comes on. It is the one that when I am having a bad day, it starts to turn it around. Love is all you need by the Beatles. It is not by coincidence that the very next song on my playlist after that is Eight days a week. I may have a thing for the Beatles huh. I mean those two songs just say it all.

Honesty is the second one I keep close. I love the TV show Bones primarily for Dr. Temperance Brennan. I admire her ability to be honest,even if it is socially painful sometimes. Really we need more of that. Maybe a little less of the ego but, I have to say she has earned her ego. When I was in the midst of teenage years and untreated ADD/OCD I was really horrible at honesty. For me this word still circles around love as well. When you love someone you want to be honest with them. When you start by loving yourself, you tend to be more honest with yourself. Even when it is not pretty.Once you do that, being honest with everyone is a natural next step.

The third one may catch some of the people who know me off guard. I have been told over and over I am so courageous to deal with what I deal with everyday. I am glad I project that. It is not however how I always feel. Most of the time I feel like Piglet. Piglet doesn’t even realize that sometimes just the fact that you keep going is courage. It is something that escapes my notice a lot. Yet again I find that this word ties into the first two. Because I love myself, I can be honest with others when they say I so admire all that you do on a daily basis. I can tell them, thank you it means a lot to hear that because I rarely feel I am doing anything really major. I am again forced to stop and think about what exactly I am doing everyday. What I am doing that they admire.

Thrive has really what the last year almost two years has been about for me. Finding ways to thrive in spite of everything that is going on. Finding happiness during hard times.  I am not letting go of thrive either. It is an ongoing pursuit and goal.

So the last word I came up with is inspiring. I didn’t start my facebook page or this blog for anyone other than me. It was more of an attitude of this is for me and if it helps someone else great. It has been slowly shifting to , I want it to inspire others. I want it to show others that we are not just our illness. I want it to show others that there is no reason you can’t thrive in the life you are living right this very moment.In an odd way this started about me, became about others and is slowly becoming about me again. Becoming about me as others inspire me or ask for advice, I tend to go back inside myself and look at things. I have made progress in areas because others asked for advice and I had to really look at something. Often times it was something I knew I was sort of dealing with but not really. Others have become my inspiration to keep making progress on my own issues.

I don’t really think I could find one word that I would stick to. I will keep thinking about it and I have followed some specific blogs that are participating in one little word. I want to make sure that my ADD does not let this project fizzle out of my head and get lost in the 1,324,4545,4591,342,528 other things that my brain likes to bounce around.

#Depressedbutdressed an on going battle

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Even when the depression is at its least intrusive it is there.

It is always there.

When I am smiling.

When I am doubled over in laughter.

It is there.

No matter what I am doing, anyone with depression is doing, it is the dark cloud that is always there.

Depression is very tricky. It lets you think that you are not depressed. It reels you into feeling safe.

I am not depressed anymore so I don’t need my medications.

I am not depressed anymore so I can lower my medications.

Sometimes it even lets you stop your medication.

That was when it was the easiest for it to strike again for me.

I don’t even second guess anymore that I need an anti-depressant.

It is just a fact that I do.

I also need an anti-anxiety medication.

Not everyone with depression is the same.

Depression is rarely exactly alike in two people.

I have a friend who when hers flares she sleeps and sleeps and sleeps.

When mine is bad, I can’t sleep.

There are areas that people who have depression can relate to.

It makes you feel helpless.

It makes you feel alone.

It makes you feel broken.

Depression is not just sadness. It is so much more than that.

Just like there are different types of people, there are different types of depression.

I was so easily deceived by depression. I was diagnosed with clinical depression. It was not explained properly to me so it got a good hold on me before I realized it. Clinical depression does not just mean a chemical imbalance. So much of what I was feeling is also common in OCD, which is my primary diagnosis.  That constant feeling of impending doom, you don’t know why its there but it is. There is no reason for it to be there. Some people get a feeling of despair. For me it has always been that waiting for the other shoe to drop feeling.

This is why I absolutely loved the hashtag depressedbutdressed. It’s creation was my friend Jen’s brain child. Go check her out (http://www.itsnotmyworkout.com/) Depression has many faces and this hashtag is a way of making people realize that.

I don’t remember to use it everyday. It does not have to be something you hashtag you use everyday. Actually I think if you do it looses its effect.

We need more people showing they did the hardest thing that day. They got up , they got dressed even with depression. They may be depressed but they are dressed and that is the hardest thing for someone with depression.

********** feelings of suicide or suicidal thoughts are a very real aspect of depression. If you are having such thoughts there is hope, There is help. There is a national number that can help you get the help you need. YOU DESERVE THE HELP. Don’t think these thoughts will go away and you will be okay. Pick up the phone and call. CALL NOW! 1-800-273-8255 ************************************

”I’m