LOVE LETTER TO NORMALS (Those NOT living with Fibromyalgia)

LOVE LETTER TO NORMALS

by Claudia Marek

Here is my letter written to explain to family and friends what it’s like to have fibromyalgia. It won’t work miracles: it’s hard to understand our illness from the outside looking in. But it is a start and can open the door to important dialogues. You are all welcome to use it, either as is, or as a basis for writing your own. Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need. The best time to do that is when you are not upset!

Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!) If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that’s fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don’t want you to think I’m making this all up as I go along.
Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for. Other times I may take a lot of medication and still won’t feel any better. That’s just the way it goes. I can’t control how often I feel good or when I’m going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I’ve seen them too. Look at the list of side effects and the few symptoms they help in return. Even in the best studies those expensive compounds didn’t help over half the people who tried them. No matter how happy the people in the pictures look, there’s still no miracle drug available.

 

There’s no cure for fibromyalgia and it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I’m getting better — I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel. Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this is likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and I’m sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe. You may remember me as a light-hearted fun loving person — and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I’ve been beaten up or run over by a truck. Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I’m creaky and I’m klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall. When there’s no railing to hold on to, it’s terrifying.

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer’s. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It’s more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don’t know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that’s really all right. I don’t want or need you to give up doing what’s important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I’ll toss and turn and not be able to sleep at all. Every little thing will keep me awake. I’m sure that’s confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you’d imagine. I get angry and frustrated and I have mood swings. Sometimes I know I’m being unreasonable but I can’t admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I’m in one of my moods, secretly I’m grateful. I can’t always admit it at the time, but I’m admitting it now. One thing I can tell you is it won’t help to tell me I’m irrational. I know I am, but I can’t help it when it’s happening.

I have other symptoms like irritable bowel, muscle spasms and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It’s very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

THIS LETTER IS REPRODUCED FROM MY BOOK: FIBROMYALGIA: THE FIRST YEAR.

 

Terrific, insightful book.  Claudia’s story is also my story – although my symptoms aren’t all that bad yet.  Sad to say that I had to Google them to even know about it’s existence and I am pretty sure I’m not the only one.

If you have any questions or if you have fibro yourself or in your family, please don’t hesitate to contact me.  We can all use a little love and #soft hugs#…

This is a New Day.  God made it, that’s why it’s good.

 

Our big, black baby

So much has happened since I last visited this place…  Hope someone – anyone – still drops by now and again.

Where to start?

She was beautiful.  Her short black hair always gleamed like they just had their hundred daily strokes.  Reversing my car out into the driveway, she could look me straight in the eyes from five inches away – not an easy feat for anyone on four legs!  Which is just one of the things that made Zoe (Great Dane by birth, our baby girl by unconditional love) so special.

That… and the fact that she would never be caught without a ball in her mouth or at least close by.  She even managed to bark at any and all passing by without letting go of her ‘prized possession’.  And how she would wake me up by heaving more than half of that 55kg body over mine for an early morning cuddle. Since she was not actually allowed on the bed, the toes on her back paws never left the ground.  That made it fine.

And that hubby called her Velcro.  Wherever I went, so did she.

And that she loved milk.  And Chewy Meaty dog pellets.  And corn on the cob.  And KFC chicken skins.  And how she always, always, had to have a paw resting on the closest human around.

She really was the biggest little lapdog we’ve ever seen.

Looking back, I get the feeling that she knew her time with us was coming to an end.  Since January she would walk out with me to the car every morning, looking me squarely in the eyes with this droopy, miserable face as if she just couldn’t believe I’d leave her at home.  Not that she was alone.  Her sister, Lara (Border Collie), was always around to play with.  But I guess it was just not the same.

Then one day about six weeks ago, she acted totally against her nature.  Rather than following me around and settling down within view from wherever I sat, she went outside to lie on the mattress in their doghouse.  Hubby and I both thought it may be arthritis.  She was 7yrs old at the time and for such a big breed she was already a granny really.  Not that she normally acted like it!  We always told everyone how she would probably never grow up…

So I got her her own single bed mattress for our sitting room at a pawn shop.  I also took her to the vet who confirmed our suspicions and gave us medication for the arthritis.  When it was a really bad day, the med’s actually did seem to help.  The next day she would be all over the place again, forever young!

This went on for about a month.  One morning though, I could see something was really wrong with my baby.  Hubby insisted I take her to the vet early – maybe he could give her an injection or something.  All the way there I chastised myself for not allowing Zoe and Lara to sleep in the house the previous night.  My dog was sick and I wasn’t even there for her until the next morning.  Me.  The one she trusted and loved and expected to look after her.  The guilt pushes up in my throat again as I type here…  If only…

I did not expect to drive back home by myself that day.

Once at the vet, he found that she was bleeding internally.  His best guess was that she had had a tumour on the spleen that had burst. Quite common in the bigger breeds. There was really nothing worthwhile he could do for her.  I needed to make a decision.

I didn’t want to do it alone.  Zoe was actually hubby’s doggy.  For about a month.  But still.  And then I couldn’t get hold of him.  I sat down on the examining room floor and she lay between my outstretched legs with her head on my hip.  Eventually we spoke and he just put in words what I already knew in my heart:  We could not let her suffer.

The vet was so young.  I’m only 35 but in that moment I felt 90.

But he was awesome.  He gave me some time alone with her and when he came back he sat down beside us on the floor.

As he finished the first injection, her head slumped down on the floor as if she was just in a deep sleep.  But he’d already told me that at this point, she was already gone.

He still had to administer two more.  I knew she wasn’t there anymore, but I couldn’t stop stroking her, talking to her.

I just had to confirm before I left there that day:  There really was nothing we could have done differently.  Nothing we did could have prevented this terribly sad day.

He said they would take good care of her.  I didn’t want to take the big, black body with me.  That was not my girl.  My Zoe was gone.

Which brought me back to the same question I ask every time we lose a four-legged friend:  Will I see them in heaven?

So many theories, so many opinions.

I don’t think God will punish me for wanting to believe that I will see her again one day.  Or even if I don’t – just hoping she’s with Him, one paw on His foot, makes the heartache a little softer around the edges.

This is all I have the heart for tonight.  There is still so much more….  About fibromyalgia and missing papers and PXE and fertility treatments and traffic fines and above all, about God’s grace.

Will write again soon.

This is a New Day.  He’s never far away and when we need Him, He opens our eyes to see that He’s been there all along.