What face today?

This week has been very testing!

 
  The second week of the school holidays and i had to stay in bed on Wednesday as i was in so much pain. I struggled to get into the hospital for my blood test, and after that i stayed in the car when my kids and partner went into Tesco, that's when they know its bad. That afternoon i stayed in bed watching American Horror Story with a brew and medication.

I was taking my Co Codamol 2x 30/500 and it really wasn't touching the pain, it was  if it was a placebo!

So yes, since then my pain has been ridiculous, im usually quite good at linking my pain to something i.e, doing too much, walking, running, stress etc. But nothing seems different. The only thing i can link to it is the sudden weather changes again to colder windy weather.

My problem, i hide the pain, i have to! I have family worried, children to look after, i cant show them that im hurting..IM FINE, or thats what i want them to think.

I am very behind on blogging due to all this, i spoke to my nurse at the hospital and she told me to ask my GP for something for the bad days, like Oramorph, i really doubt he will give me anything like that as hes told me to just take Paracetamol whilst on the Gabapentin!

No chance!

A successful doctors appointment

Today is my first GP visit after seeing the doctor at the pain clinic a few months back, who after looking through my notes agreed i did in fact have Fibromyalgia and he started me on Gabapentin.

I have had so much trouble over the years with doctors regarding my pain.

 My Endocrinologist and Neurologist were great! They set up blood work, MRI scans, a muscle biopsy and X-rays, which showed absolutely nothing to why i'm feeling this way and in so much pain. I did have Graves disease and had my Thyroid removed as they thought it was causing the pain, which it wasn't and i now suffer from the Hypoparathyroidsim which i will write about one day.

I eventually saw a Rheumatologist who is usually the main man to officially diagnose Fibro, he gave me a medical and stated i had a lot of tender points and restriction in movement.

He told me, "It's Chronic Pain Syndrome and it will go".

So now three years later, it still hasn't gone! My GP has told me i am now being reffered to a specialst for my Fibromyalgia and Chronic Fatigue.

I am so happy it has finally got to my GP after my Endocrinologist told me this years ago after all my tests came back clear, i even have paperwork of the diagnosis which i did take to my Pain clinic.

When i first got the inkling of it being Fibro, i read a lot of people finally got diagnosed after 5, 6,7 years and it baffled me! I now understand why it does take so long, so many specialists throwing different answers in the mix.

If you are in the middle of a diagnosis....... keep fighting!

Blood work day!

Here it is again, hospital blood test day which i have attended weekly for the past 3 years. These tests are to monitor my calcium levels as i suffer from Hypoparathyroidism after an operation to remove my Thyroid due to Graves disease, which they also though was causing my pain which was later diagnosed as Fibromyalgia, Chronic pain Syndrome and Chronic Fatigue syndrome.

On my way to hospital i received a message from my cousin to tell me my Granddad has had a fall and hurt his back, he was currently in an ambulance to the hospital i was attending.
I had my bloods done quickly and rushed around to see my Granddad, his brother was there to who followed him down behind the ambulance (my great uncle but i call him uncle).
My Granddad is a big man with a bigger heart and i know if he could help it he would have tried to hide the pain he was in from me so i didn't worry, which seemed near enough impossible.
The porters came and wheeled his down to the X-ray department to check there were no breaks etc, my uncle went outside for some fresh air whilst he was in so i sat outside the room and waited.
I will never forget the painful screams that were coming from the room whilst they tried to position my Granddad for an X-ray. My 74 year old Granddad seemed in so much pain to wail out through the hospital corridors with nothing i could do to help him.
This is something i will never tell them, unless they read this of course but i doubt it, whoever i spoke to on the phone i reassured them he was fine and hes had an X-ray and painkillers which were kicking in, which they were i didnt lie...i just hid parts of it...white lies?

I am quite glad it was me there as i think now i have hardened a bit, seeing somebody in pain, due to the pain iv endured over the years, i know if it was my mum, Nan, aunties they may have broke down.
I waited there until he was wheeled out and i smiled at him, It will be OK!

He was discharged later that day as the X-ray was clear, he seemed to have strained a muscle which is good news.

Sadly the anxiety i endured between setting of from home to the hospital ( even though i didn't show it), it caused my calcium levels to drop, my levels were 1.83...normal should be around 2.4, so now i'm being closely monitored again!

Day 2 of School being out.

My Feelings: USELESS

The weather hasn't been the best, typical English Summer hey!.

Yesterday i promised the Kids we can go to the park today, then today came and my pain is still bad.

This is when my mood goes way down. 

Why am i like this? 

What did i do to be given pain like this? 

My energy is almost depleted, i am on the sofa downstairs with my notebook, my legs are aching so bad, its in my bones i'm sure! My ankles and wrists feel splintered when i move, my neck and shoulders are no better than my legs. WHY?!

My memory isn't the best at the moment so i'm going to refer back to this and write it in my little note book (yes another notebook lol) for my CBT appointment as all i can tell them is I've felt down but then cant put into words why, its like my mind isn't anywhere!

At the moment the kids are playing Mine craft on the Xbox, i feel like a failure that they're 'stuck in', the TV is basically looking after them today, you know when you call people for sticking their kids in front of the TV all day, i'm that today and i couldn't feel any worse about it.

So yeh, this is a mum with Fibromyalgia, the raw deal!!

I'm not sure how other parents cope with Fibro and children at home when they're in a flare, i know online like Facebook people make out they are doing amazing things and even though behind closed doors after taking numerous pictures of their child baking, the house is a mess, the children are running around screaming and the mum is on the sofa pulling her hair out...i want to see THEM pictures..but that's not what i see and its why i feel so bad, but to be honest i'm not posting pictures of today, or updating a status about today, which really i should do and im pretty sure other mothers would appreciate the raw motherhood updates rather than the " Amazing day out at the zoo!" pictures.

How do other Fibro parents cope the best during the holidays? Do you also have days like this? 

Happy Monday :)

To anyone who reads here....have a Happy Monday :)

Here are some spoons :)

Healing Crystals for Fibromyalgia

Crystals are a big part of my life, i only started my collection early this year after reading books and posts, the way they can help the body whether its to aid healing, infertility, love, sleep...you name it, there are crystals for it.

Crystal Healing can be described as the application of crystals to aid the body’s energy system find a healthy and comfortable point of balance to improve the quality of life. As we’ve already seen pain has a serious detrimental effect on the quality of life and crystals can be highly effective in removing pain.

Crystals can help pain in several ways. They can work directly on the pain as above, certain crystals will generally aid particular areas of the body, such as citrine for the digestive tract or emerald for the lungs, and working with or just wearing these crystals may help to relieve pain in specific areas or organs in the body and some crystals will act as “pain killers” and dull the sensation such as chevron amethyst.

Amethyst is my favorite, i have a large raw Amethyst rock, small crystals in a jar and numerous polished for around my neck. It is prized for its ability to work on all types of pain, whether emotional, physical, spiritual, or other.  Amethyst works on the subtle level by balancing the subtle energy bodies and cleansing the aura.  Meditation with Amethyst can bring new insights into issues that may or may not have been addressed by you in the past.  Amethyst is said to relieve pain, depression, anxiety, and insomnia

Citrine can provide an energizing vibe of vitality and hope when it is most needed, helping to lesson depression and negativity. Citrine makes a great compliment to Amethyst, so much so that they are often found together in the form of Ametrine, which beautifully combines the two energies of these crystals.

 Rose Quartz can be quite helpful to those who find themselves depressed or sad.  As soon as onenQuartz is known as the Master Healing Crystal because it contains the full spectrum of light and as such will work on every level to bring the body into balance. It strengthens and stabilizes the body's energy fields and promotes harmony. Quartz can amplify both positive thoughts and energy and can stimulate positive action when it is needed. It can be held or worn to promote clarity of thought and to help you to see your way more clearly.For Fibromyalgia symptoms i wear/ hold Rose Quartz and Clear Quartz.

Worth a read!

This is one of the first books i read on Fibromyalgia, my mum got it for me not long after us realising this is what i may have (before all tests were done).

The book tells you about signs and symptoms and what people have said who also have the condition. I took a picture of a section which related to me so much, it was as if i had wrote it. The worst thing about having a Chronic illness is people not understanding, due to this, friends/family either walk away or they get pushed away. After reading this book it hit me so hard that i was not the only one, its so hard being consumed in your own little bubble of pain, you don't always think there are more people going through the exact same thing. This is one instance where i think the Internet is amazing! It connects people from all walks of life, different countries and cultures, all joining together helping each other through the tough times, managing or coming to terms of the thought of having a Chronic illness, that is what we need, acceptance and understanding.

Have you got any books you could recommend?:) x

Finally leaving the house!

When i'm feeling better i make sure i leave the house or do something worthwhile, this humid weather has done nothing to help my pain, only burdened me! It's the school holidays in less than a week and i'm really hoping this humid weather doesn't return, warm/hot i'll accept with a pinch of salt, apart from it making me more tired my pain seems to ease, but humid weather...nope it can stay well away!

My mum took me out for the day to Kirkby Lonsdale, there are some amazing views and the shops are gorgeous small independent ones, i would move there in a heartbeat! We visited a little cafe to have a drink and a sit down, and do they know presentation for food! If i asked for a blueberry pie with ice cream where i live, it would be a slice of pie with a blob of ice cream in a bowl, this was impressve!!

We visited an area famous to the village which is a place to sit and take in the surroundings of Ruskins view, high above the River Lune you can see the breathtaking view of the river and Underlay Hall, the famous and stunning Ruskins view. This is definitely an area where you could come and think, let all your worries melt away. The art critic, painter and poet John Ruskin wrote " I do not know in all my country, still less in France or Italy, a place more naturally divine!"

Thats all, im tired now haha

I shall be suffering tomorrow!!

Pretty Lightening and Booms!

Thursday night-Friday morning was the big showdown in the sky! Me and the hubby had settled down to watch a film in bed, then out of nowhere...FLASH and BOOM!

It's been a while since the sky brought us Mother Natures bright and loud Orchestra AKA, Thunder and Lightening...Let's just say our film was very welcomingly interrupted, as no sooner has it started i was sat on the window sill trying to get a shot on my camera phone of a magical slither of light, 

I was always a dancing in the rain kind of girl when i was younger, i still am if it wasn't for the 'You know what' getting in the way of being saturated with cool rain on a warm night. I've got to say, the next day the humidity had lifted and i'm happy to report im feeling a bit better,

enough to get some mobility back.

I can no longer say, " I cant wait for Summer, its when im at my best!", ahhh well :)

That night after tea i took my 2 boys over the fields for a walk, we blew bubbles on the path surrounded by green, breathtaking trees and grassland, we played with a Frisbee in the long waist high grass, seeing who could find it first with the boys falling all over the place and laughing, i also watched them play hide and seek in the grass, it was the most perfect night ive ever had, nothing got in the way of its perfection, my pain was controlled, the sun was shining, just me and the two loves of my life...they are my moon and stars :) xx

My Fibromyalgia symptoms

So, i recently saw a Doctor in the Pain clinic, he was so lovely even though i was useless due to brain fog and my emotions being all over the place...i'm very sure after i left he got some whisky out of the drawer with a shot glass but proceeded to drink straight from the bottle, but i cant speculate.

Before i went to the appointment i bought a notebook to write everything in, which is why writing this list will be a lot easier than doing it from the top of my head! In the book its 4 pages long so hopefully it wont seem so long on here...if it is i apologize and i give permission for you to grab the whisky out ;) .

• All over pain/ muscle pain.

         Deep aching, dull, throbbing in my legs, arms, shoulders, back, neck and feet.

         Pain after being active and the day after, when the weather changes, temperature drops or bad              weather after it being OK, the pain can also flare with no warning that i know of, my newest                trigger is humidity after 5 years of pain.

     
  Pain all day but manageable, the above triggers worsen it which is my flare, these can last between a day to a few weeks, i take Co-codamol x2 30/500 maximum 4x a day, Sometimes i alternate it with Tramadol 50mg for a next dose when my pain is bad  as im taking Co-codamol more frequent, it stops working as good! When this happens the Co-codamol does not last, the maximum it lasts is 2 hours after taking it, but it takes 1 hour to start working so i only get 1 hour relief,

• Temperature changes.

      I wear thermals in colder weather, i use Tubi grip bandages on my wrists and ankles and on my lower legs for calf muscle pain, The pain i get get in my ankles, wrists and knees are a sprained feeling, like it cant hold any of my weight, this causes me to struggle walking when iv'e either got out of bed of from being sat down.

• Stiffness.

      In the morning, getting out of bed causes me to stumble a bit due to stiffness in my legs and the sprained feeling in my ankles, that my feet cant hold my body weight. This also occurs after sitting.

• Tiredness and fatigue.

      This occurs through the day, whole body tiredness where i just feel exhausted, not being able to make decisions and being quite hazy. I don't wake up refreshed.

• sleep problems.

      Mostly due to the pain, i take Amitriptilyn 25mg at night which has recently been helping me fall to sleep but sleep is still broken, i had it upped to 35mg to help with anxiety but as we have found out anything over 25mg causes me to wake up with a headache. The problem with this happening is that i cannot take Tramadol or Codeine with a headache or it turns it into a full blown migraine, so i have to take Ibuprofen or/and Paracetamol  until my headache has subsided which i cannot keep dealing with as i have young children and need to be able to be mobile for them. Also Tramadol affects my sleep if taken after 5pm.

• Anxiety and Depession.

      I am currently having CBT, i have only started suffering since my Thyroidectomy in 2011 where the operation didn't go to plan and i woke up with very low calcium levels and it is now a lifelong illness....along with Fibromyalgia and this extra condition it has become a bit to much on my shoulders where i now have low moods a lot and anxiety.

• Skin pain.

      Sometimes flares up without a trigger, feels sensitive to touch like its burned or raw, this unables me to wear certain clothing when it happens as it feels like its scratching and taking a layer of skin off!

• Things i have tried or what i do.

      I wear thermal leggings and tops with temperature changes, i use rice packs heated up for my neck, shoulders, behind my knees, inner elbows and legs. I have also bought heat pads for these areas too and wear them under my thermal leggings or normal leggings when i'm on the go. I use muscle rubs and wear Ugg boots the majority of the time, possibly 10 months of the year!

      In the past i have tried dietary changes, dairy free ( difficult with Hypocalcemia), gluten free, cutting down on sugars, diets which contain only fresh Organic food.

• Medication
• Thyroxine
• Amitriptilyn
• Calcium Carbonate
• Vitamin D, Rocaltrol
• Tramadol
• Codeine
• Paracetamol
• Diclophenac

What strategies do you have which gets you through them painful days? What would you recommend doing which may help myself or other readers? Please let us know in the comment box below :) xx

Happy Flare Day!!

The Mission: Get through the day!

Today is...different, my Fibro pain is usually very familiar, deep muscle pain which burns when i move my arms, legs, neck etc, for the past 5 years it has always been just that, among other things ( I will write my symptoms in a separate post).

I get flare ups mostly in Winter, it is when my pain really floors me. This Summer so far has been, how do i put it...Interesting! I am in the UK, apart from having a warm week it has also been very humid. I had no idea that the humidity can affect Chronic pain conditions as well as it can in the colder months, it has never affected me...up until now!

 This weeks 'new' pain, like i mentioned my usual pain is an aching, burning pain, this week my muscles, EVERY muscle sorry, has felt bruised and hot inside, i cant lift my arms up, move my shoulders, my bum cheeks hurt (that's a very new one!), down the side of my hips, my legs including my shins and i cant even raise my toes as it hurts the front part of my ankle.....eurghhh is the word which is favorable for everything today ha ha.

My body: " Happy Wednesday! If you are thinking of moving your neck, shoulders, arms, wrists, hips, legs, feet and to not have a head ache, then i shall advise you to come back on Thursday!"

Sadly being a mum of two with a partner who works full time, the world doesn't stop at times like this..a girl can only dream right, wheres Bernard's watch when you need one? ha ha, Kids need cleaning and dressing, breakfasts and lunches need making and the dreaded school run ( on foot, as the learning to drive still hasn't worked out quite so well yet) needs completing, so the plan of action....shove something down my throat, anything to line my stomach which is usually bread, have my Gabapentin, Codeine, Paracetamol and Diclophanc, fill my flask with Tea, milk and 3 sugars and ill be on my way...obviously getting myself dressed too, just in case you thought i was leaving the house in nothing but my under crackers ha ha.

Overall, its been a bad day, but iv'e  fought through it! I have totally accepted i will have these conditions for life, and ill have some bad days and not so bad days, maybe the odd good day thrown in for a bit of optimism! Days like today b

ecome more bearable by having so many interests to keep my mind focused on something other than pain, this week it has been my family tree. After 4 years i have become a whizz at Census snooping and record finding, it doesn't half pass the time!!

In my next post i will be sharing my very own, personal, symptoms. I like reading what other people are battling with and when i see something i relate to i don't feel as alone in this! So i hope it does help you guys!

If you've enjoyed this post and would like to post any of your own coping techniques of a flare up which may help myself or other readers, please feel free id be very grateful :) xx

A new venture!

I had never in a million years thought that one day, even before the age of 30, i would be succumbed to living a life based on a rota, day to day routine of tablets and pacing myself just to get to the end of the day.

Thinking back to the days when i could just 'go for a walk' and also all the times i had needed to go somewhere, not far, but i would catch a bus or ask for a lift or even call for a taxi, anything to avoid over exerting myself or to break a sweat. We take so much for granted, but as the saying goes ' You don't know what you have until its gone', that can mean numerous things to anyone....love, pain, friendships or even places you have been but not truly took in the surroundings of the beautiful world we live in, in my case its all of them but mostly pain, always pain.

Welcome to my world of Fibromyalgia, the loud, colourful, all guns blazing Fibro.....and this is Chapter one, the start of opening up about life as a young mum, a wife-to-be and a darn right stubborn lady dealing with what Chronic Pain throws at me!

Most of you who are reading this are most likely fellow Spoonies doing what i do and search online, maybe just to read someone else going through the same thing, its comforting and familiar....anybody else, welcome to my bubble :) .

I am a mother of two amazing boys, i am a stay at home mum so most of what i write will be about coping with motherhood and Chronic Pain combined. I have such an understanding and perfect hubby to be who works so hard to support us whilst i am out of work.

Welcome to my blog, this is such a new venture for me, so be kind please haha x Emma x