Looking for Hope in 2011

Are you looking forward to the new year ahead? Not everyone is feeling a sense of hope, in fact, some are only able to feel dread, possibly worse, not much of anything, numbness… no sense of hope, no sense of “good things to come”. For those suffering from depression, New Year’s Day may be another reminder of the days of hardship they feel are to come.

I am blessed that in this moment I feel hopeful, nothing is more precious to me than hope. When it is lacking, the world feels bleak, dark, and filled with sadness. When I have even a tiny morsel of hope, I can make it through just about anything. So can you.

One thing I have learned, my mood changes, my circumstances change, nothing is ever as permanent as I think it is. (I do forget this at times, hence my most recent post “Teetering Too Close to Depression“. The world is constantly in a process of change and when it feels as if nothing will ever get better, we often have to hold on a little bit longer and it will. Of coarse, putting forth effort of our own to create better health and happiness is even better than waiting, but sometimes it’s all we can do just to hold on.

If you are looking for hope in 2011, I want you to know that it is there. If you know it, and see it, then share it with others! If you are unable to see it right now, then please, hold on.

Psychosomatic No More

Tonight we had a great chat during the usual Tuesday night (#mhsm) Mental Health and Social Media chat on Twitter. I was happy to be moderating this evening and I chose to discuss the topic of “psychosomatic illness”. I based the topic off of a post I recently wrote on WEGO Health called, “Is Psychosomatic a Bad Word?

The comments were wonderful and overall the discussion itself was fabulous. So many thought provoking statements and questions, as well as heartfelt sentiments were shared. I would love to recap the whole chat for you, but instead I will direct you to the transcripts at http://wthashtag.com/mhsm.

What I want to make a point of sharing is that the word psychosomatic really is about the mind/body connection and it’s current usage is typically quite distorted. We hear the word “psychosomatic” from a doctor and we feel dismissed, often rightfully so. We tell a doctor or friend that something could be “psychosomatic” or that we have a history with mental health challenges and our health concerns and/or pain may be immediately taken with a grain of salt and not given anywhere near the attention it deserves. It is a huge problem for patients and I believe it is a problem for physicians as well. Patients feel neglected, rejected, and sometimes infuriated by the presumption that an illness or pain could be entirely caused by their emotions and I assume doctors must feel like that is sometimes the only answer they have. I am also confident that many a diagnosis is missed by physicians who do not look further into causes of pain and illness once they learn that a patient has a psych history. Not to mention, their bedside manner often goes straight down the tubes, once they determine they are dealing with a psychosomatic illness of some kind.

In order to create an environment where psychosomatic is no longer a bad word, we have to change our whole approach. The roots of the word itself comes from the combination of mind and body. Combination. Intermingling. Entwined. The perception that the mind is somehow separate from the rest of the body is just plain foolish (that’s right, it’s dumb!)  and creates an enormous amount of hassles and unnecessary, sometimes atrocious, challenges for patients.

All illness, even ones with a very identifiable cause, have a psychosomatic aspect to them. All illness affects our body and our minds. That means an organ of our body, our brains, are always involved and there is nothing “psycho” about that, it is plain truth. I am not an MD, or even close, but I know that my brain works intimately with every other system in my body. When something is going wrong in my foot, my brain knows it. There just is no separation of mind and body.

If my doctor wants to discuss a psychosomatic cause of pain, I’m all for it, because it’s sure important to consider what can be done for better brain health, emotional and neurological components at once. It’s just as important to discuss these issues as it is my lab results. In fact, perhaps it’s time to remember the real changes in chemistry in our brain when we are ill or in pain, there is nothing made up about that. Can we measure these changes? Can we get lab results back about that? Not so easily, but perhaps there is a future in that.

What do you think? What will it take to change the stigma of “psychosomatic”? Can you see the possibility of the word being used in a healthy way? What have your experiences been with this word? How has it made you feel? Are you willing/able to talk to your doctor or caregiver about it?

Teetering Too Close to Depression

It’s been a rough one my friends. I am really hurting, horrible headache and emotions are all on the down side today. I would be lying if I didn’t tell you that I am downright sad and miserable. Feeling icky fibromyalgia-wise two days in a row, plus an awful headache surely doesn’t help. I am having doubts, doubts about myself, about the hope I had pocketed for the new year, about the work I’m doing (am I putting my efforts in the right places, am I doing a good job? etc.) and the need for more income … I feel trapped in a lot of my circumstance and as if I have no options. The walls feel like they are caving.

I can’t seem to see the possibility for change, it feels as if all options are bad ones. Ever been here? It doesn’t matter what the circumstances are in life, when they feel intolerable and when you feel helpless it creates a truckload of sadness. So what to do now?

If I can get through this headache and since I got a shower in today (yippee!) I am hanging on to hope for a better tomorrow. That is what I do… when the day feels it’s gone bad, I just have to put my hope in a new one. Perhaps I’ll get better perspective, more clarity and dear Lord, I pray I have less pain. Brutal honesty, I don’t know if it will happen, I don’t know if I will feel any better tomorrow and I don’t know if I will feel like putting my optimism forward. But, unless I want to end up wallowing in major amounts of self-pity, I am going to have to make an effort. If I remain as I have been today and do not put effort towards caring for myself, it will only be a short walk to the diagnosis of major depression and I certainly don’t need that right now.

I need to prepare myself, what happens if I am still feeling bad physically tomorrow? How can I wrap my mind around that and still find a way to feel optimistic inside. I also need to look for opportunities and solutions for some of my circumstantial issues that are bringing me down. I need to be proactive even if it is in one area and with one thing.  Baby steps are still steps in the right direction. What would  you do to help yourself out of a funk like this? How would you prepare your mind in case it lasts longer than you hoped? What kinds of tools and resources do you keep handy if you feel you are teetering too close to depression?

Speaking of tools and resources, I received an amazing gift in the mail today, that, once my headache is gone, I believe is going to be a great tool for me. It’s called “The Trail is the Thing” and it is a book of reflections based on another book called “Pathways to Recovery: A Strengths Recovery Self-Help Workbook”. I have to admit that I have not done the workbook yet, although it was given to me by one of the authors. I do think I will go ahead and jump into “The Trail is the Thing” because it looks and feels like something much more doable for me now. I’m sure I will have a lot of great stuff to share with you as I read. Unfortunately I do not have a link to give you but when the site is up and running for the books I will make sure to pass it on. Many huge thanks to my friend Lori Davidson, a fellow supporter of AFSP and the Out of the Darkness Community Walks for thinking of me and sending me a copy of this book!

When Your Caregiver Doesn’t Care

Sometimes you just need to vent, this is one of those times.

It is so hard to understand how someone that lives with you day in and day out does not accept, remember or understand that you are suffering from a chronic health condition. I can’t speak for you, but it feels as if this is what I experience on a regular basis. I don’t get it. I don’t understand why there is no empathy, no desire to help  or even notice when I am having a bad day because of fibromyalgia. It feels so… wrong.

I certainly do not want to be waited on hand and foot every day, nor do I ever expect that, but when the bad days come around, as this day after Christmas turned out to be a bit harder than I thought it was going to be, it would be such a comfort to know that I had someone to count on. It is frustrating to feel like a burden, to feel like any favor I ask for is only a thorn in the side of the person I hoped would care for me at my most difficult  moments. The lack of empathy or concern is so evident, I can’t help but wonder… do I even matter?

I know I am writing this for all to see, but it is simply a representation of how I feel, of how it feels to be in pain to be overly fatigued and feel so utterly alone. Moments like these, I wonder if it would be better to be alone than to wish that the one person who is available would pay attention. To have pleas for help be answered with ill temper or obvious frustration is nothing short of sad and at moments truly heartbreaking.

Does he not recognize how much work I have put into Christmas, how much time and energy I have spent to create a wonderful holiday for our family? This is the price I pay… the exhaustion, fatigue and pain. It saddens me more than I know how to express…this feeling of not being cared for. It is a feeling, an emotion, and I am certain it will pass. But at this moment, it has me feeling lost and desperate for a different kind of relationship.

It must be challenging to face days like this as the “caregiver” and it must be hard to put yourself in the shoes of the one in pain. It feels as if the illness itself has never been truly accepted in my situation and as if there is a fair amount of denial practiced. What would it mean for him to accept the fact that I have limits, that it is hurting my health (emotionally if nothing else) to have to push forward without assistance or understanding? What do I need to do to prevent these kinds of emotions from building up and to realistically look at my expectations, are they reasonable, am I asking too much?

My wish for anyone who is suffering from a chronic illness, is to have a partner or loved one who is willing and able to lovingly care for you during your bad days, even if they are many, to help you to feel comfortable and to remind you that you are loved. For now, I’ll take comfort in knowing that it could be much worse and that tomorrow will be a brand new day.

Recovering from Christmas

Image by Georgie Sharp via Flickr

It’s the day after Christmas and I know I am not the only one feeling sore and zapped of energy due to fibromyalgia or even due to the emotional expenditure that can come with the holidays. For some of us, it takes a proactive approach to recovering from the holidays.

I personally had a wonderful holiday and even though it was a good one, I am still feeling sore in my typical sore spots. For me, it’s my hands, arms, neck, back, legs and often and accompanying headache (which I thankfully do not have at the moment!). Additionally, I am very fatigued and feel as if all I can really muster today is a movie marathon. (likely to be Disney movies at my house) Lucky for me, I am not in severe pain, just aching and sore. But that may not be the case for you, you might be feeling really icky after an extremely busy few days prior to Christmas and on the big day itself.

If your day was exceptionally emotional you may be feeling depressed, sad, anxious or even angry. It’s certainly not unusual for the holidays to bring up difficult family issues and challenge us with dynamics that are trying at best. So now, it’s time to recover emotionally, too. If depression is something you struggle with regularly or on a recurring basis, it’s important not to allow negative thoughts and emotions take up residence in your head today.

I thought I would add my ideas on ways to recover as well as direct you to some other resources that I have found and believe are helpful.

1. Focus your thoughts on the positive, reflect on the good moments and memories that you can hold onto for the future. You may have had a tense meal, but maybe everyone was jovial and polite during your gift exchange. Some of my favorite moments are when the children (and adults) are opening gifts, watching their expressions and hearing them share their excitement. Giggles, screams, requests to hurriedly get the present out of the package, are all delightful sounds and moments to remember. Or maybe, the meal was the best part and you can think back on the yummy treats you enjoyed, savoring the taste and memory of family tradition. The decorations themselves can be a source of joy, recalling the flicker of the lights on the tree or candlelight throughout the house, spending time reflecting on these things warms my heart, maybe it will yours as well. If you want to take it an extra step, journal the happy moments so that you can keep them longer.

2. If there were uncomfortable, tense or confrontational moments, then perhaps you could take some time to process the situation and work to gain some insight into why things felt as they did. You could look for ways to better handle the situation if it were to happen again, or you can work on different ways of setting boundaries for yourself so that you may be able to avoid those kinds of situations altogether. No matter what, if you take time to do this, it’s important not to focus on the negative but to look for solutions and how to improve the situation rather than ruminating on it.

3. Self-care: Put pampering high on the list today and for the next couple of days ahead. You may need an extra large dose of relaxation and that’s okay. Be as gentle as you can with your body and take time to restore. Make sure to include some movement into your day as well. From what I am learning, movement is essential to keeping the pain at bay, it seems almost counter-intuitive, but it truly does help. Yoga, stretching, a short walk, can all be gentle ways to incorporate movement into your day, even when you feel icky. I personally like to play on the Wii (Wii Fit and Wii Sports Resort are our favorites right now!)  for a little while with my family to get my body moving, if I can, and if I am not feeling up to something more vigorous.

4. Make use of left-overs! If you have the opportunity to save left-overs from the holiday meal it can be a great saving grace for the days of restoration to follow Christmas. It can bring back some happy thoughts for us that associate food to good memories (not always the healthiest thing, admittedly) but it can also be a great energy and time saver. It’s easy for my husband to warm up some left-overs and I can rest or even if I need to do it, it really doesn’t take too much effort. Be careful not to eat all the left-over sugary treats though. I really believe that any sugar overload exacerbates my pain and fatigue.

5. Just be nice to you. You are deserving of special care. We all are. There are usually demands we can’t avoid, like taking care of our children or pets, extended family, etc., but if you can plan for downtime and realize how important it is to the days ahead that you recover, you won’t feel guilty taking time for you. If you start to feel guilty, then remind yourself, you can’t do what you need to do if you are in pain in the days of ahead. I often am struck with the guilt bug, but shoo it away, because we must take care of ourselves in order to be good for the other important people in our lives.

For more ideas and information about recovering from a flare try “Recovering from Flares with Fibromyalgia and Chronic Fatigue Syndrome” on About.com’s Fibromyalgia and CFS Blog. I also just came across the newest post there: Fibromyalgia, Chronic Fatigue Syndrome & the Post-Christmas Crash perfect reading for today!

P.S. If  you feel especially depressed today, you are not alone. Don’t hesitate to reach out to others, especially others who understand, either online or off. Contact with kindness is a sure mood booster. Surround yourself with people who care, choose humor and some activity that makes you feel good! Try to be proactive for your mental health, it really helps. You can also find community at Una Vita Bella – The Community and meet others who are striving to live a beautiful life with chronic pain and mental health issues.