Peaceful, Easy Feeling

serene

I, like many other people who suffer with chronic conditions, go through decent periods, tough periods and horrendous periods and I have just been through a tough one (won’t say horrendous, cause it always can be worse). My pain has been intense, my fatigue has been high and the weather is not warming up.   This winter is just not leaving and even though it’s spring on the calendar, the weather in the northeast USA is cold.  I have been holed up inside for months and while I did get a lot of rest, I really haven’t had much social interaction.  I spoke on the phone and texted and emailed people, but haven’t really seen many people in person for months.

Yet throughout all this isolation, I still find that I am at peace.  I am at peace with myself, even though everything around me is in disarray.  My future, my living situation, my job outlook and my health outlook are all up in the air.  Nothing is stable and probably won’t be for a long time, yet I AM STABLE.  I am even keeled, positive and at peace.

Even before I got sick, I was alright when I was by myself.  Some of my friends couldn’t stand the silence and the emptiness of being alone in their apartment.  One of my friends would never sleep in her bed if her boyfriend wasn’t home or if she was between boyfriends.  She would always be busy making places and double booking, just in case someone backed out because she dreaded being alone.  I always thought she didn’t like herself.  This was a friend I grew up with and so I knew her for a long time.  But 6 years ago I made another friend, who also hates being alone.  At 50, you’d think she’d be used to it but I guess some people never will get used to it or be comfortable being by themselves or with there own thoughts.

Someone who isn’t comfortable with  who they are, can’t be alone for long periods of time (at least that’s my observation).  I like myself and I like the person I am.  So while I may enjoy being around other people, I know I will be fine when I’m alone too.

Missing InAction

 

missing

 

I have been Missing InAction for the past week and I haven’t been able to do much.  My mind has been like mush and I haven’t been able to formulate a thought, or rather a logical thought.  These episodes hit us like bricks and we are like zombies walking around in the world yet not participating.  This past episode has been a long one, maybe not as dire as past ones, but longer.  I am finally starting to emerge from this state, but still feel empty and uninspired.

Yesterday I made it to a doctor’s appointment, it was a new doctor and with a new doctor comes all the anxieties of will he believe me,  will he treat me with respect.  kindness and understanding and will he have anything new to offer me.

I am happy to say that I can answer yes to all of the above uncertainties.  The doctor was gentle, gave me a thorough examination and talked to me with respect.  Even though he did seem a bit rushed, I didn’t feel neglected.  We went through a history of my illness and symptoms and he asked a bunch of questions about previous medications and then he offered me a medicine I have not taken before.

He wrote me a prescription for Savella, which is the 3rd approved medication of it’s kind for Fibromyalgia.  I have previously tried Lyrica and Cymbalta, with no improvement in my symptoms.  These medications only made me feel worse with their side effects.  So now the big question is, “Do I try Savella”?

I have been researching the medication and its side effects, some of which scare me.  I am sitting here staring at the prescription and I just don’t know what to do.  At first I was so excited that I was offered something new to try and help me and I was going to rush to the pharmacy, but now I really am unsure.  This doctor spent 15 minutes with me and did he hear that I currently have palpitations due to some minor heart issue, or did he hear that I get dizzy at times.  These are 2 side effects of the drug that I am not sure I want to encounter.

The dilemma I feel right now is faced by many people dealing with illness.  Do I try something that could make me feel worse in the short term, but perhaps a little better in the long term?  Do I try something that I likely will have to be on for the rest of my life, if I feel it helps, only to find out in 5 years that the drug can cause cancer or some other fatal ailment?

These situations and many others that I deal with on a day to day basis escape the healthy individual.  Sometimes I just wish I could shake my healthy friends and make them realize how lucky they are.  If I have to hear one more story about how a friend is upset because she had to miss her nail appointment or that she has 2 parties to attend in one day and just doesn’t know what to do, I THINK I WILL SCREAM.

So for today, I will sit and mull over what to do.  I know once I make the decision, I will be alright with it and that will be that.

 

 

 

What would you do today, if you knew you’d have CFS tomorrow?

solve cfs

 

As I sat around the Thanksgiving dinner table, I wondered how each and every one of the people sitting around me would cope if they suddenly woke up with CFS tomorrow.  I don’t think anyone of them would handle the situation as graciously and as humbly as I have.  I could be wrong, as some people rise to the occasion and I’m not wishing that any of my loved ones or dear friends, ever have to deal with what I am dealing with.  But I do often wonder if anybody can put themselves in my shoes and envision the realities of my life.

Then today, I get this email from The CFIDS Association and clicked on the link and watched a video, which asked the question:  What would you do if you woke up tomorrow and were well?

Everyone in the video answered with normal everyday things that people take for granted:  getting a job, going on a family vacation, finishing up college; spending a full day with grand kids.  I know at the top of my list would be to take a walk, a very, very long walk.

When I was healthy, I never sat and worried about getting sick or suffering with a long chronic condition.  I think if I woke up well tomorrow, I would always worry that CFS is like the devil sitting on my shoulder waiting to attack again. Could I ever really shake this experience and not be afraid that with the next step I take or movement I make, I’m going to be in pain and suffer with extreme fatigue.  Or maybe the reverse would be true and I would start living life to the fullest, taking advantage of every opportunity presented to me and not shying away from things.

At the very end of the video, it asked the reverse question,  What would you want to do today if you knew you’d have CFS tomorrow? The purpose of the video is to raise money for additional research and I hope that it makes people think about what their life would be like if they woke up and couldn’t move or think clearly.  If their life was undeniably different from when then went to sleep and different not in a good way.

I am just not sure that most people think that way, unless illness has touched their life.  I hope I am wrong and this video raises a lot of money so that the cause of this mysterious illness that desimates the lives of its sufferers can be found and I can wake up well tomorrow.

I guess how I handle a return to wellness is something that I can only dream about right now.  I will cross that bridge when I get there and I hope I do get there.

 

 

Pain, Pain Go Away

pain2

How do you get people to understand something that they can’t see?  I am struggling with that thought right now.  I have been in alot of pain this last week, whether it was back, head, neck, shoulders…just all encompassing pain.  I have been sitting in a dark room or wearing sunglasses in my apartment to minimize the light, yet I can’t make anyone understand how I feel.  Not even my doctor.

I had a doctors appointment yesterday with my rheumatologist, who believes Fibromyalgia is a real condition with real, life changing symptoms.  He listens to me when I have an appointment, yet offers no help because he tells me I have exhausted all the possibilities for treatment.  I have tried Lyrica, Savella, Cymbalta, Nuvigil.  I have tried it all and nothing makes a bit of a difference.  I have taken supplements, probiotics, eaten healthy green vegetables, drank immune shakes and D Ribose powder, but yet I feel no different.   I asked him when the magic pill will be discovered to take away my pain and he said, “Unfortunately, I don’t think it will happen in my lifetime”.   I replied, “Well then I hope you live to be a 100”.  He smiled slightly and replied “So does my wife”.  And off I went with my naproxsen and tramadol prescriptions.

I have wasted hundreds and hundreds of dollars, which I unfortunately don’t have to waste, in an attempt to do something that will make me feel better, but so far, no luck.  So what am I suppossed to do when noone offers me any real helpful solutions.

I guess I am feeling alittle down this week as my frustration levels are high and I am just plain sick and tired of feeling sick and tired.  I know I need a good night sleep, but that hasn’t happened in the last few days as the pain has kept me tossing and turning.  I don’t even think a visit with a friend is the solution to this latest flare.  I just need to do what I have done for the past 4 years when I feel like this… pull myself together and take one day at a time.  I am the only one that can help myself right now and that’s what I’m going to have to do!!

 

Reiki

reiki

Reiki is a Japanese technique for stress reduction and relaxation that is suppossed to promote healing. It is based on the idea that an unseen “life force energy” flows through our body and this life force is what causes us to be alive. If one’s “life force energy” is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy.

I have tried accupuncture in the past but had never been lucky enough to have a Reiki session until this past weekend. It was an amazing experience and I can’t wait until I am able to have another treatment. I have heard alot about Reiki and also about how important it is to find the right Reiki practitioner, as the success of your treatment is very dependent upon their skills. The woman (Ms. N) that I found, through a friend, was an amazing soul and I felt very special in her presence.

There are some people that exude positivity and then there are the ones that have a negative force around them, Ms. N was the former. She looked like your everyday regular woman, but I think she had something unique about her. When speaking with her on the phone, I explained my situation and was concerned about being able to pay her the full fee. Ms. N replied that she had a calling and that she is a Reiki healer and is doing this to help people. I could pay her whatever I felt I could spare, or I could give her a little gift, or I could give her nothing at all. She also offered to come to my apartment so that I didn’t have to use up my energy in trying to get to her.

I really didn’t know what to expect from the treatment, but from the moment it started I was overcome by a peaceful happy feeling, one that I hadn’t experienced in a very, very long time. I noticed she was drawn to my legs and that is where I felt the most heat radiating from her hands. Coincidently, my legs are my weak spot as they don’t support me for more than 10-15 minutes at a time. Ms. N didn’t know this.

After the session was over, but before I moved from the table, I told Ms. N I was very stiff and that the Fibro makes it difficult for me to stay in one place for a long time. She replied that she is stiff too from giving the treatment and that she also felt weak in the legs and had to sit down. This was the first time Ms. N had experienced this sensation after giving a treatment and she felt it was partially a result of getting my energy. She assured me it wouldn’t last and that she’d be back to normal in a short while.

I asked her where she was drawn to on my body and she said my legs. She also told me she saw a very, very vivid image surrounding me the entire session. The object she saw had no meaning to me, so she said it must be symbolic of something. We both did some research and what she saw provided me with alot of hope.

The symbol she saw, in ancient cultures was a symbol of vitality, wholeness and health. An image that was a protector of evil and that turned a bad situation into a good one. She also saw me walking through a field with hundreds of leaves that had fallen from the trees. To her, this meant that I would be walking again. Ms N. also told me that no matter what was going on with my physical self, I had no bitterness and no ill will which in itself is such a gift and so important for healing.

I know everyone of us wants to hear good things about how we will return to health and Ms. N is the only person that has ever said that to me. All the countless doctors I have appointments with and pay high copays to see, never give me an ounce of hope that I will feel better. They give me prescriptions to take to manage my pain and my symptoms and tell me to deal with the situation. It’s no wonder I felt like this session was a special one, because it brought me hope and made me think about the future when I would be restored and be able to walk through that field on a breezy fall day and just enjoy being in that moment.

Physical Being Vs Emotional Being

EmotionvsPhysicalBeing

It’s so hard to have any type of normal life when you are dealing with a chronic health condition that drains your body’s energy like a smartphone drains its battery.

But how do you stay sane and true to who you are when you are a prisoner of your body. Moments of regular interactions with my friends are very rare and resemble nothing like they used to be. My birthday is coming up and it should be a time for celebrating with others, but instead I’m very nervous about how I’m going to survive the week. Several close friends and family members are lining up some times to take me to lunch or early dinner and all I’m thinking is how am I going to get through this without crashing. How do I strike a balance between trying to enjoy some normal celebrating and my extreme physical limits?

I live my life (or really more like function daily, not much living going on lately) within extreme boundaries. In order to avoid a crash, I am very strict about the number of steps I take each day and the activities I do. But this is very challenging and sometimes I think having occasional days of normalcy are worth the crash, but other days I’m not so sure.

Getting together with friends makes my spirit happy, but not my body. Is extreme fatigue and overwhelming pain the price I have to pay in order to enjoy a little slice of life? Is having a birthday dinner with a special friend worth a day or 2 resting in bed. These are the questions I continually have to ask myself. I hate being alone so much, but I can’t be around others as I pay a steep price for any type of social activity. The days of lonliness and of quiet time do take a toll on my mental state, as I was a very social and inquisitive person in my healthy life.

So is it better to punish my physical being or my emotional being? I don’t have the answer to this question and it’s one that torments me every single second of every single day.

Green Eyed Monster

Green-Eyed-Monster

When you are living with a chronic condition, there are many things that you could be jealous of if you look at what other people have and how their lives are proceeding. You can get caught up in the trap of thinking about all the things you don’t have and wish you did have, starting with HEALTH, then the ability to make choices in your life, to be able to go out and socialize without counting your steps until your next crash, having the mental capacity to work and be productive and also to be able to spend money on things you want and not just need to survive.

I don’t think about any of these things when I compare my life to my friends and family. The one thing I am envious of is the ability to get a good night sleep. I can’t sleep and without sleep a normal healthy person can’t function, so how can someone who is ill and in pain and exhausted from the pain be expected to function in society, when sleep does not come naturally.

The process for trying to go to sleep is very laborious and people in my life don’t really know the full extent of it. I have always had an active mind and that is one of the things that is so hard to shut off when it’s time to go to bed. The inability to sleep is also a side effect of my illness.

My nightly wind down routine starts about 2 hours before I actually attempt to fall asleep. I turn off the ringers on my phones, shut off the computer and don’t connect with the outside world. Then I try and watch mindless television for an hour or so. I also take the pill of the month as the doctor’s keep rotating sleeping pills or other off label medicine to attempt to help me fall asleep. I haven’t had much luck with the traditional sleeping pills, so I’m thankful my doctors are trying creative ways to help. After the pill, we need to apply a nasal strip, as I have terrible allergies. Now, the televisions gets closed and the sleep mask goes on and so does the sound machine, to drown out any and all sounds. Oh, I forgot to mention the blackout blinds get pulled down too.

And now, I lie down and hope that sleep comes quickly or comes at all…. Even when I do sleep a few hours, I never feel rested or refreshed and waking up every hour or so to shift position because of the intense pain, just adds to the problem.

I will happily report that last night my routine worked and I was able to get a few hours of sleep, that is until my inconsiderate upstairs neighbor started making loud banging noices in the wee hours of the night.

Only 10 more hours and my rountine starts again…