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Saturday, July 21, 2012

LIVING WITH FIBROMYALGIA AND PERNICIOUS ANEMIA

Living with Fibromyalgia 
and 
Pernicious Anemia

Although I do not usually talk about it much I live with two very debilitating and life altering disorders.  I have been diagnosed with fibromyalgia for over 15 years and more recently with pernicious anemia.  I also have a severe vitamin D deficiency and hypothyroidism both of which are well manged at this time. I have good days and bad days and sometimes terrible days.  My bad days seem to come as they will with no particular triggers. I wake up in the morning and I KNOW if I am going to have a good day or a bad day.  I have often wondered what is really wrong with me and how can I be so very sick? When I am terribly sick I go to bed at night wondering if I will make it through the night and I wake wondering how will I ever make it through the day.  No one can see my pain nor can they feel what I feel. Being sick like this is a very lonely place to be at times.  Now mind you, I am not upset that others don't "get it" and I certainly would not wish this on anyone. However, I often think that people see me and they think oh she's fine, she doesn't look sick at all.  Yet, I know they will never be able to understand because they can't see my fibromyalgia or my pernicious anemia and there is no way they could know. 

I often wonder how two such disorders could make someone feel as I do?  I have been tested for all sorts of things and it always goes back to fibromyalgia and pernicious anemia. On my bad days I think there has to be something else wrong, I just can't be this sick.  But alas, I am this sick and somehow I have to find the strength to get up and keep moving. Then there is the guilt I carry due to the fact that I can not always attend the many functions I should attend.  You know the trips to the park with my daughter for school, the fun organizational days for my husband's work. You know things like that and it is hard because what do you tell people? I usually tell them I am just very sick and I try to leave it at that but that leaves a lot missing doesn't it? I do not know how or why I came to be so sick but I am and it is a struggle sometimes just to keep moving. 

Over the years I have learned to manage the fibromyalgia and now I am trying to understand the pernicious anemia.  I have to plan way ahead and rest a lot in order to make appointments and things like that, at least for the fibromyalgia. Now for the pernicious anemia I am trying to understand how it works for me and it is my hope to learn how to manage and cope with this new disorder.  For the moment I have learned to find comfort in the things I love most. First and foremost my family, my beautiful children and my wonderful husband. My home and the things I love to look at and I love crafting, collecting and sharing. Crafting works because I can sit somewhere and be as comfortable as possible and make something with my hands. I feel accomplished and I even sometimes forget just how bad I am feeling. 

This past week was a  very bad week because I was incredibly sick and I could not seem to come out of it.  Finally on Friday I started coming around and sat down with my beautiful Tiffany and we made some easy DIY jewelry. So out of my bad week I manage to pull off cleaning my house, going to the Doctor (this I do every week for B12 shots) and making some pretty jewelry. I missed a function at my husband's work but he understands (I hope) even if no one else does.  I have to celebrate my small accomplishments and try to forget about the things I missed. So here is a picture of the jewelry that we made and my accomplishment for the week albeit small it meant a lot to me. From fibromyalgia to pernicious anemia to trying to live my life as best I can with a smile on my face and beautiful things around me. 


In this picture: 1 - Birdcage Necklace, 2- mixed media necklace, 3 - crochet bracelet with flower and 4 - black lace, ribbon, pearls and bead bracelet. 

Here is a picture of my Eric who helps me get through the bad days, along with my daughters. 


and finally..... a bit of

Inspiration

I also love to look around for inspiration when I am not feeling well. 
This week I found this wonderful Blog post on Etsy. 

I wanted to share because it was such a  fabulous tutorial and an incredibly beautiful lady. So enjoy and here's hoping you will find your inspiration. 






Hugs, Beverly




8 comments:

  1. I am sorry you are stricken both with fibromyalgia and pernicious anemia. I have pernicious anemia for over 35 years--I am 80 now. This is one disease that can be managed. I would suggest you ask the doctor's nurse how to these shots yourself. You simply cannot run to the doctor all the time. Then take a look at the vial. Read the ingredients. I us cyanocobalamine, 1000mcg, IM. Again, check the ingredients on the vial and ascertain that it does not contain ALUMINUM. Yes, some do. There are other injectable products; hydroxycobalamine - which is very expensive. PA can be easily controlled and as such should not add to your problems. But you do have to keep up with the injections for the rest of your life

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  2. I don't know anything about the anemia but I am all too familiar with fibromyalgia. Interestingly enough, exercise helps immensely (if you can walk that day!) Seriously, I found it to be a life-saver for me.

    Sorry you are going through the bad days. There can be periods of remission too. I hope you find some relief soon.

    Love your blog. I adore dainty china and beautiful things. Excellent blog. I found you via Blog-Train. I will return.

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  3. My burden to carry is the Fibromyalgia, and I have irritable bowel syndrome as well.
    I know exactly what you mena by looking fine on the outside. Sometimes I just have to tell myself I don't care what other people think. But when I need help it's harder to ask when nothing 'shows'.

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  4. I think you are incredibly courageous to live with that pain. We all have our burdens to bare but the way we handle it is very important. Making pretty jewelry is a great way to deal with it!
    Love Di ♥

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  5. Thank you ever so kindly everyone. I am doing better this week and hope to feel much better soon. Thanks for all your kind words and encouragement. Hugs, Beverly

    ReplyDelete
  6. Hello,
    Fibromyalgia (FM or FMS) is characterised by chronic widespread pain and a heightened and painful response to pressure.Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition.
    Acupuncture in San Carlos, CA

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  7. Empathy from England :~) I have fibromyalgia, myofacial pain syndrome, chronic fatigue, ptsd ext
    I joke that some folk collect stamps or teapots, I collect autoimmune illnesses and some extras.
    It doesn't stop the pain but it does help people smile when they can't cope with the answer to
    "What's actually wrong with you?"

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    Replies
    1. Thank you Lucy and it does feel as if I am collecting autoimmune illnesses. It is very difficult to explain to others and I have found over the years that it is easier not to even try to explain. I got so tired of explaining it to others that I have found that I just don't get out as much or have as many friends. People try to be nice and they offer advice. some not so needed, so it is easier just not to put one's self in those situations. Being sick can be a lonely thing and I never know what to say is wrong with me. Hugs, Beverly

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