A Husbands Perspective

Fibromyalgia changes everyones life around you.

                 In the Beginning         

Perspective is a particular attitude toward or way of regarding something; a point of view. As Elyse has navigated through her fibromyalgia journey, we’ve had our ups and downs, we’ve learned a lot and she eventually was able to come to a place where she can manage her fibro and function as a wife, a mother, and as the matriarch of our household. Every day she is in some degree of pain, experiences some degree of brain fog, easily exhausted, and easy to irritate, BUT she is able (most of the time) to find a way to get through most days just fine. I’ve adapted as a husband and we’ve adapted as a family. But it wasn’t always this way, it’s taken a long time. It wasn’t easy – it’s been a long hard road. My perspective has changed, rather, evolved over the years.

 

Befoer Fibromyalgia my life was different
Us before Fibromyalgia

The first time I realized that something was wrong with Elyse was when she was pregnant with our third child. The first time in my life where I felt powerless and helpless. I never felt so scared and weak. I don’t remember when EXACTLY during the pregnancy that it started but around the first trimester she started experiencing indescribable pain. I don’t believe it started off immensely severe, but indescribable in that she couldn’t describe exactly what kind of pain it was. It escalated and grew to the point where she would just lay in bed and cry because the pain was so bad. From my perspective, this was the scariest part. I didn’t know what was going on. None of the doctors we went to knew what was going on. I didn’t know if or in what way this was affecting the baby. I didn’t know if she (the baby) was in immense pain also. And it wasn’t just pain; the difficult part was that she experienced a multitude of different issues during this pregnancy, we and the doctors couldn’t figure out what could be attributed to the pregnancy and what (if any) was due to the pregnancy. There are the obvious ones such as fatigue, irritability, moodiness, that we attributed to the pregnancy. But the brain fog, the heart palpitations, the extreme lethargy, and most certainly the pain – nobody knew what was going on.

 

Fibromyalgia changed my life too

        I tried to be a supportive husband and partner, tried to be there for her and support her. I was fortunate that I was working at a job that was very flexible. I was able to take time off when I needed to be home with Elyse. Most times it was spur of the moment – I’d wake up, take a shower, get dressed for work and then have to make a decision to call in or not based on how Elyse was feeling. However, it got to the point where I’d be able to tell the night before if the next day was going to be a rough one for her and I’d call in that night. I’m very grateful for having the opportunity to do that. If I didn’t have that flexibility I can’t imagine any other way I’d be able to take care of Elyse and our other two boys. From my perspective though, there were some days I’d (selfishly) rather go to work than stay home and take care of everyone. The household was stressful, chaotic, and full of tension. Going to work was my “getaway”. Our two boys were a handful (still are) and I didn’t really know how to take care of Elyse and the baby. I’d try, but a lot of the time it’d be the wrong thing, or not what she wanted, or done in the wrong way. It was a lot and in hindsight, I could have been better. I attribute a lot of it to just not knowing.

        Fibromyalgia changes everyones life around you.During that time, I had to become responsible for a lot more than I ever had to do before. I had to balance work, kids, and a sick pregnant wife. Things around the house backed up; laundry, dishes, cleaning, food, etc. The two boys (ages 2 and 7) still needed a lot of attention. Elyse needed a lot from me. It wasn’t easy, and I didn’t always want to do it. I know there are “super moms/dads” out there, I’m not one of them. But, I’ve learned from that and I’ve grown since then. Elyse is a strong and determined woman, she’s endured a lot and I admire how much she has grown.

 

If you are looking for information on having fibromyalgia and being pregnant please follow the link in the second paragraph under when she was pregnant Melissa with melissavsfibromyalgia.com is a great resource. 

Why and how do you deal with it?

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How scary my first diagnosis was

At first, I was told I had a muscle disease. How scary that was for me, I cannot put into words. I had three young children including a baby girl I wouldn’t be there for. All of the milestones I would miss, that thought brought tears to my eyes and broke my heart. Then the thought of the memories my children would have of me would be sick. Needing help to do everything and eventually leaving them. I started setting up other women who could be like a mother to them. Asking family members to help with certain things I wanted them to know.

What it feels like to have fibromyalgia

So when I was told I actually have Fibromyalgia, I was relieved, to say the least. I knew it meant a lifetime of pain. How much and to what degree I did not know. Then you have the additional side effects, the ones no one tells you about.
The muscle pain is one thing but then you add the exhaustion, eyesight issues, migraines, sleeplessness, brain fog, nerve pain, joint pain, dizziness, active labor pains, and countless others. The list of side effects created by Fibromyalgia is truly endless. We are finding out new things about our personal FIbromyalgia every day. No two cases of Fibromyalgia are alike, something that helps me may not help you. The amount, degree or type of side effects are also all different.
Then you add in all the people, including most Doctors, who do not understand anything about Fibromyalgia. Which is understandable in some ways. Look at all of us having different side effects to different degrees and this medical problem is very confusing for anyone, including those of us who actually live with Fibromyalgia every day.

I have heard many comments from people with Fibromyalgia about their families leaving them behind. Can you imagine going through something that can keep you out of daily activities with others and then they leave you because of that? Many people have said that their family believes they are faking. Anyone who is of sane mind would not want to fake this illness. I am sure there are some people out there trying to use our illness to gain disability, they probably think it will be easy because Fibromyalgia is hard to detect visibly. But for those of us who are not lying, we all know we are telling the truth about our pain and daily difficulties. There are times when we just cannot get out of bed. Then you have the other days when it hurts to live our arms so we can brush our hair. My husband has had to wash my hair for me several times over the years. I am blessed to have that help.

coming together to unite fibro warriors

The yo-yo effect of fibromyalgia

For most of us with Fibromyalgia, we have days when we can brush our hair and shower. Then we have what is called a flare-up or as some call it, a fibro flare and those are the days it is hard to get out of bed. For anyone who does not believe Fibromyalgia is real because we have some days better than others, you are wrong. We are in pain every single day of our lives. The only thing that makes certain days better than others is the degree of our pain is less on the better days. I have not been pain-free in seven years. There are many others who have had it much longer and most of us looking back can remember side effects earlier than when the daily pain started. But to us, it was normal because we had been dealing with the side effects mildly off and on for so long they felt normal.

Each day I find a way to live life, just like countless others I have talked to with Fibromyalgia. You just have to sometimes force yourself to smile (the fake smile we all know so well) and decide to be happy that day. With as much happiness as you can possibly muster This task may seem small but it is indeed a large accomplishment for us.

Why would you go around smiling all day when you have pain, brain fog or exhaustion hounding you? There are not many people who can achieve this great accomplishment. So just because someone you know who has Fibromyalgia is smiling that does not mean they are happy and everything is wonderful that day. It means they are trying to force their day into brightness.

How honest we should be

When most of us are asked how are we doing that day and we say good, it means, “At this moment my pain is manageable and I may be able to do something today.” Which is maybe a new way we should say it. Maybe if we said, “My pain is less right now but if you want to go out will you drive so I won’t have a flare-up?”

I would say this to the people who are a part of my understanding circle. Like my Husband or my Mother-in-Law. My own Mother and I would have to draw straws on who feels better than whom that day. We all need that circle of people we can trust. Those people who make us feel less abnormal than everyone else. We deserve just as much happiness as other do. Regardless of a visible illness or not. I am not less human because I have Fibromyalgia than you are. If we ended the judgment of others our whole world would be a better place to live. We need each other to build us when we fall and love us whether we are whole or chipped. Love is love, there is nothing better or greater than love.

My list of helpful favorites

As I go through life with Fibromyalgia I carry with me, my heating pad, melatonin (time release), GABA, light exercise and medicinal food. When I flare-up I choose to use a cleansing bath with Epsom Salt, Baking Soda,

My favorites for a fibro flare up.
My favorites for a fibro flare up.

and Lavender Oil. Plus I talk to people who know or at least try to understand what it is I am going through. These are the ways I have found that help me. What are some other ways you deal with your Fibromyalgia?

Please let us all know so maybe you can help someone else feel better today.

As always let me add, I am not a medical professional any advise or options expressed are not medical advice. These are my disclaimers.

Moving to a new house and having Fibro

Moving  to a new house with Fibro

Participating in our move to a new house while suffering with Fibro has not been a dream at all. While moving I had a pinched nerve for the first week from packing and moving boxes. Ointments, massage nor a hot Epsom salt bath helped me. The whole time we were moving boxes into and out of the truck I could feel nerves all over my body. The first one made my lower back unbendable.

After that the nerve decided to call all its relatives that lived through my left thigh. After all the pain and immobility I was still quite proud of myself. I could do that much physical activity. Just very carefully so I would not continue to injure myself further. I ended up having immobility for three weeks. I thought I was going to need a masseuse. But here I am able to sit up straight and type on the computer. So things are looking up.

Our new house has made almost all of us happier. Our middle child is unhappy about the change in his school. Other than that he is happy though.

I was out of action with my blogging for a couple of weeks due to this move but I am very proud of myself for everything I did. I accomplished a lot for someone with fibromyalgia. There is no way I could move all of our belongings every day.

This move also showed me that some days I do not feel like I can stand, sit or move in anyway but I really can. Very slowly or very painfully but I can move and for that I am thankful. On some very horrible days I need my husband to wash my hair. In the end it all balances out.

For weeks after this move I had the constant additional nerve pain from the pinched nerve. I still had to keep on going, being up on my feet all day everyday. Either a family member needed me or the house needed something. I tell you my husband and I are used to relaxing after dinner but there has been none of that lately.

And then there was family

Have you ever felt as if there was no catching up on your to do list? For some reason with this move we have not been able to catch up. Whether it is something for our new home or the past home there is always something. Then you add in everything every family member needs as well and the list just never becomes any shorter.

My kids decided to grow during our move, all three of them at the same time. Don’t you just love it when they work as a team! One of our sons bedding decided to fall apart. He had already moved onto another interest anyway so it wasn’t such a big issue for him. But for me it was another addition to my ever growing list.

In this house I have also taken the time to make the kids bedrooms more of a private sanctuary for them. I hope they enjoy it and if not maybe one they will look back and be able to say mom always knew what I was into while I was growing up.

And now back to the move…

I felt very proud of myself when I moved every single box from my house with my husband. I was actually an active member of my family. More like the wife my husband used to know. He complemented me many times, he was proud of all the work I was able to do. My husband would talk to me about how I would not have been able to do this much work just a year ago. And he was right, I lived a different lifestyle a year ago.

The lifestyle I lived a year ago was much more confined into my chair and bed. I was doing everything I could while I was catering to my pain but I wasn’t living. Something I am very glad of is, I changed my lifestyle. I am forever thankful that I am the type of person who can and will change things to better myself.

If you ever do find yourself moving from one home to another make sure to get a great back brace.

This is what I still have left to go through, sometimes it’s hard being the mom and wife. 

Now, I need to take a deep breath and unpack all of this. WHY!!!

 

 

 

My Fibromyalgia Story

Welcome to my personal experience with Fibromyalgia

I have been living with Fibromyalgia since 2011. The first three years I suffered undiagnosed. It was agonizing and made worse by the fact that I did not know what was happening to me. I stopped doing things I loved because I was afraid something horrible would happen and with my husband deployed I was all our kids had.

After diagnosis

After I was diagnosed I spent the next three years figuring out how to live with fibro. It was also an agonizing and frustrating process. At first I let the doctors treat me, nothing the doctors did, said or prescribed  worked. Everything the doctors had me try masked the pain and helped with sleep but I was still to exhausted and constantly having Fibro Fog, since I was still experiencing debilitating side effects of Fibro and feeling drugged, I decided to change somethings.

When I did not receive the recovery I wanted

When the doctors help was not working for me the way I wanted it to I stopped taking the pain killers they once prescribed me. Once I found out what was in those pills I decided I did not want to chance being on an organ transplant list. Which then resulted in me self medicating. After a lot of trial and error I finally found a way to live comfortably and happily with my Fibromyalgia.

My goal for sharing my discoveries

I want to share my personal experience with Fibromyalgia- my goal is to help others navigate their way through this debilitating condition. Make friends along the way that can help all of us understand how to live the life we always wanted to while Fibro comes along for the ride rather than Fibro ruling our bodies and lives.

Your Fibromyalgia

It is important to understand that Fibromyalgia effects everyone differently and that what worked for me may not work for you. But hopefully through sharing my discoveries you will be able to find something that helps you