Call me Jobette...or maybe not yet.

Job was a devout man who loved and served God. Satan challenged God saying that Job only loved Him for selfish reasons, that if all was taken from him, then he would not love God anymore. God allowed Satan to take all that Job had. He took his wife and children, his home and possessions, his wealth and status, his health and his friends regard. Even though Job was living in despair, living in pain, living in loneliness and poverty and without support, he still knew God lived. He never doubted.

During these 30+ years of struggling with a disease that had no diagnosis, and no name (I was not diagnosed until November 2015 and did not find a truly understanding Doctor until February 2017) I have lived in pain, despair, a living hell.

My health declined steadily over the years. Pain and fatigue have been constant and heartbreaking. Struggling with this alone caused a loss of work and career I had worked so hard for. I was named and called lazy, not trying hard enough, not wanting to do things for others.
I lost my marriage as the man I loved and still love and by the grace of God will always love (for love is not possession but is doing and seeking what is best for the loved one) understandably could not understand when doctors, those who think should know, dismissed my plight.
I lost my children, both of them, for 7 long years, as I could no longer do what was best for them, so they went to live with their father. He could care for them materially and physically and I could not. In my love for them I did what was right for them but I rarely saw them and of course what must they have thought. They probably thought I did not love them. This hurt but love is not a popularity contest. I did what I did for them and cried myself to sleep in my heartbreak.
I lost my home, all my savings, sold off my possessions, trying to buy food and rent because with no diagnosis and no strength I never had any support financially from any source other than some from my blessed mother in the UK who died in 2008, and some from my uncle a little later.
I started to get a reputation when applying for jobs as either being unable to keep the job and when things were bad, not even being able to attend the interview.

10 years ago my body systems starting being severely effected.

1.My eyesight is never the same from one moment to the next, I have double vision a lot of the time due to the muscles which support eye movement and could no longer read or look at people easily.

2.My hearing declined and I am deaf in 3 frequencies and limited in all the rest.

3. My bowels no longer function and I have to go to enormous lengths to evacuate my bowels and regularly I bleed and am in pain.

4. I cannot control the urinary system and feel I want to pee all the time, I leak all the time and when I do go to evacuate I have to empty and wait a few minutes, then I can evacuate a bit more, and wait a few minutes...so on. It can take me 20 minutes to slowly and exhaustingly part empty my bladder (I can never empty it completely).

5. I have IBS and GERD and have reduced salivia and have difficulty swallowing food. I cannot eat too much in one sitting and have gastroparesis which means the stomach and bowel cannot empty properly and food gets stuck causing an array of problems. All because the muscles of the GI tract no longer function properly. I have very dry eyes and mouth.

6. I have severe migraines and constant pain in my head. I cannot co-ordinate and daily fall over things and down things and trip over my own feet. I have to take especial care getting in and out of the bath, using stairs or steps, even walking on floors that are slightly uneven will cause me to trip and stumble. I usually hold onto someone or a support. I cut myself if chopping anything, cutting anything, opening containers. I have no real muscle strength and use a device to open containers or ask another.

7. My feet and legs burn a lot in bed and my sleep is disturbed. Fibro sufferers do not show the same sleep patterns and we go for years without any proper deep sleep. My nights are endless, my days painful and exhausting. I feel things touch me that are not there, my limbs, jerk, my hands shake, simple things like getting showered and dressed can be a marathon.

8. My short term memory is poor and I find it extremely difficult to learn new things. I had a Mensa IQ and now I am like an idiot at times.

9. I suffer severe anxiety attacks which are physical in nature; I cannot breathe, I do not want to be in my body, I cannot escape it, it is endless and can go on for hours.

10. My heart is effected and it has stopped beating for several minutes on 4 occasions. I suffer a lot of chest pain like having a heart attack (I could be having a heart attack but I have had this so often I ignore it).

11. I have TMJ and dental pain a lot. I could have bad teeth but would never know, they hurt all the time anyway. I have had many teeth removed and lost many because of low salivia and problems caring for myself and being able to get to and afford a dentist.

And all these things and many other symptoms go on day after day whilst I live inside this body filled with pain all over and fatigue so bad there are days I can't lift my arm to brush my hair. When I have a fibro flare, which feels like flu x10, the body is all inflammed and screaming for relief. I wrap myself in blankets and sweat as the only way to combat the extreme pain and stay like that for days almost dehydrated by the event.

All these things are my life but not yet could you call me Jobette. Why? Because I have always had 2 friends who never deserted me or threw judgement upon me no matter how I appeared to be or how long it was between communications. And I have a sister in the UK who has tried to understand and be there for me and never threw judgement in my face. Now I have a few more who I am blessed to call friend.

In this living hell, like Job, I also say that I know God lives. I love Him and try to serve Him. I do not believe I am righteous like Job but I do believe that in my life I have been tried in the fire because God loves me and wants me to learn and grow. Would I ask Him to take all this suffering from me? Of course I would! I am mortal and do not like or want suffering. I ask Him often, Please Father, bring me home. And His answer; I am bringing you home, but do you want to come home without those you love? My answer is no. So I stay a while longer knowing He is suffering with me and giving me the chance in some unexplainable way to help those who mean the world to me.

Thirty Years of Living with Fibro: Part 1

I had started having migraines and memory issues in my mid- teens. Always an A grade student, suddenly I was finding it harder and harder to function and had many illnesses (mono, meningitis and shingles among them).  I got my place at University but on top of all this came the draining of energy. According to all my results at school I should have had no problems, but I found, inexplicably, that I could not keep up, not even on a bicycle.

At A Place of Learning: 1984

Why is it so hard for me now?

Things were so easy before;

Understanding, remembering.

No longer first place.

Over the campus grounds race

Students on bicycles chase

Educational excellence

As the seasons go round.

"Go without me, don't wait!"

With my books on my back,

Strength and energy I lack. So I sit

Amidst the dust and the trash.

I cannot explain, I am covered in shame,

Drenched in oceans of pain.

Hidden behind a locked door.

Pride comes before the fall.

Count Your Blessings.

When upon life’s billows you are tempest-tossed,

When you are discouraged, thinking all is lost,

Count your many blessings; name them one by one,

And it will surprise you what the Lord has done.

So amid the conflict, whether great or small,

Do not be discouraged; God is over all.

Count your many blessings; angels will attend,

Help and comfort give you to your journey’s end.

Text: Johnson Oatman Jr., 1856–1922

I have discovered a program called Hoopla which means I can download books from the library to my iphone. I can have 5 a month and means I can listen to books when the pain is bad and I have to lay in bed. Often times my energy is so low I cannot hold a book. A great blessing this is.

I recently came across a book called A Fine Balance by Rohinton Mistry. It describes the poverty and hardship of the people of India. Unless you live in a shack or sleep on a railway station platform night after night with very little food and have to squat on a railway line to empty your bowels being the only place to go... then you have more blessings than you can guess.

From amazon:

With a compassionate realism and narrative sweep that recall the work of Charles Dickens, this magnificent novel captures all the cruelty and corruption, dignity and heroism, of India. The time is 1975. The place is an unnamed city by the sea. The government has just declared a State of Emergency, in whose upheavals four strangers--a spirited widow, a young student uprooted from his idyllic hill station, and two tailors who have fled the caste violence of their native village--will be thrust together, forced to share one cramped apartment and an uncertain future. 

A Circus of Puffins

I have loved puffins ever since I first saw them for real on the coastline of Wales. The collective noun of a group of puffins can be raft,burrow, impossibility or circus. I like circus because watching puffins is such fun. They are not magnificent like an eagle, incredible like a hummingbird, or awe inspiring like the long distance flyers such as the Arctic Tern. I love them simply because they make me smile. They add colour and life, character and meaning to many wild spots. They are very communicative birds and do so by the way they move, walk and rub bills. In creating them it seems to me that God said that in all things there must be fun and laughter as well as seriousness. I love God for not having overlooked the need of man for lightness of heart during our journey here.

The last few days have been bad for me. I have had a migraine from hell again. Three days of solid pain in my eyes and head like a knife is being stabbed and twisted repeatedly into it. I still have it. These days of pain I endure so frequently can be overwhelming; exhausting, depressing, hopeless. But into the midst of our sorrow there is always a light. Something else to fix our thoughts on whilst we struggle through. Puffins are for me one of those things. Anytime anyone mentions puffins that part of me that is still in love with life despite how small my life is wakes up and shouts, 'Here I am! Yes, tell me about the puffins'

Baby puffins are called pufflings...of course. Doesn't the name alone make you smile?

For everything there is a season and a  time to every purpose under heaven...a time to weep and a time to laugh. Ecl 3:1 & 4

For some fun facts about these delightful birds:

http://projectpuffin.audubon.org/birds/puffin-faqs

Sleep, the blessing of the Lord

One of the main issues with any chronic condition is sleep. I haven't slept through the night for more than 30 years and with fibro, the muscles tighten all over the body. The body moves constantly to try to alleviate the cramps and so even when getting a few hours of sleep one wakes soon with covers tossed and turned and in a great deal of pain. One thing I found helped is magnesium. Not just any magnesium. Most Mg supplements are a waste of money. You need Magnesium Glycinate or Theanate. I use Orange Naturals Magnesium as shown:

https://well.ca/products/orange-naturals-magnesium-glycinate_60383.html

It helps and is not as expensive as some other glycinates. ALL of us and I repeat all of us are magnesium depleted. We have little magnesium left in the soil and now it is becoming needful to supplement. All migraine sufferers and chronic pain sufferers, especially fibro, I recommend supplement daily with this. A quick way to get it on a bad day or if you are a person who does a lot of exercise is soluble added to water:this is the best one I have found and I love the products of this company.

http://purica.com/reference/minerals/magnesium

Good sleep is vital as are muscles that can relax. Whilst I continue to work on this I hope you, my readers can implement this one step into your routine. I have yet to find anyone not benefit from it. Don't go beyond the recommended dose but do take it.

I take comfort from the words of Paul, which tells me even thought I may not sleep I have hope that I will be changed and in the end be made whole.

Behold, I shew you a mystery ; We shall not all sleep, but we shall all be changed,

In a moment, in the twinkling of an eye, at the last trump: for the trumpet shall sound, and the dead shall be raised incorruptible, and we shall be changed.

1 Cor 15:51-52

God gave each of us a rose garden.

I am a fibromyalgia sufferer, or should I say, warrior. This disease runs into all body systems that has fibrous tissue; that is muscle, tendons, ligaments. Think about that for a minute and point out to me where in the body you don't find this tissue. It is brutal and reduces a person's life to almost a reclusive existence of pain, chronic fatigue, body system malfunction and despair. It's 24/7, no holidays, no time off for good behaviour, no parole and currently no cure. It is a life sentence and a prison in which a person becomes bound. I don't have many answers right now for this but I am writing this blog as a sort of therapy for myself and maybe, hopefully, to find answers and as a light on the path for someone else.

Even though I have lived this since my teens and am now in my 50's and much of my life has been limited by it, I do believe in a living caring Father in Heaven and that He does have a plan and a purpose for each of us. I don't know why God sends what He does into anyone's life. I don't know why I have been denied so much in this life because of this disease. But I do know I am not alone in suffering. I know that there are many hidden people, crippled people, rejected people who despite giving their all are deep in a pit of despair, loneliness, fear. I don't know what God needs each of us to do to make things better but I do know we need to do something.

I felt God wanted me to write a blog as therapy for myself. It won't be a place that I am trying to achieve anything on a public stage although I hope it may help someone else., it will be just what each day brings into my life as I struggle with this disease. The obstacles the disease sets and those put there by others who cannot comprehend that suffering doesn't always have a name, a support group, a cure. By putting this out there i am looking for answers for myself and hope to be able to see more clearly what I am meant to gain from this. I am going to be honest and for the first time really allow you, whoever you are, to read what life inside a sick body is like. Not for pity but for knowledge. Because I am not the only one trapped by this or similar diseases out there. I would like my experience to shed light on these diseases. I would like to play a small part in making the world a kinder, happier place. There will be no judgement in my posting on how I feel or how others react towards me. I hope to just write it as it is.

If you read and get something from it, just say Amen and maybe share with another. Because what is very clear to me after years of struggling alone is that we cannot do this alone. We cannot walk through this Valley of the shadow of death without friends, comforters, supporters, fellow cripples and lepers. Not only can we not do this, but we are commanded not to. The adversary is strongest when we are alone. He digs deep into our shame, guilt, fear and every other negative emotion and eats away all vestiges of light and truth.

So if you want, come with me daily in a walk through my rose garden. At times it may make you wince, cry and hopefully laugh. My father had a rose garden and those roses had thorns, they had pests and bloomed and withered all too soon. But yet planting and tending his flowers was always a joy for my father; a coal miner who spent most of his working life buried deep in the earth. He knew to be whole we need to be in the presence of the sun, tending growing things, struggling to overcome that which would do harm to our small gardens.

Unlike the song, I think that each and everyone of us was promised a rose garden by God, with thorns, blooms and all. And it would be exactly what we needed.