Bog off 2012!

I could sit and count my blessings over the last year but frankly /I don't want to. 2012 has been a roller-coaster of a year that has seen many tears. Don't get me wrong there has been much laughter too. I am eternally belssed with wonderful family, many good friends and a roof over my head and food in my stomach. However, I would like to take these things for granted.
So my wish for 2013.....
Please can the finances of both Barefoot software and my own endeavours be a bit more steady and giving? A few less head in hands moment would be appreciated.
Please can my dear darling son get his head down and get on with his GCSE's without too much extra stress resulting from dyslexia and dyspraxia?
Please can the tween girl remember that she is loved and love us back with a little less dark looks and door slamming?
Please can you be sure not to take any of my family to heaven this year? I do so miss my dad!
Please can no more essential household appliances give up the ghost.
Please can the car issue be resolved?
Please can the wedding be arranged and paid for without too many hiccoughs?
Please can we find a way to have a family holiday this year?
Please can I have less stress?
Please can I have less pain?
Please can I regain my ability to sleep 8 hrs and feel refreshed?


However, I ma also one who does look to the blessings so....
Thank you 2012 for,
My divorce finalising.
Selling the old marital home.
The health of my beloved family.
The laughter the darling son provides.
The sunshine my darling daughter brings to my life.
My beloved, understanding and gorgeous DD.
Our full bellies even when the chips were down.
My ability to make "something from nothing" when my family is hungry.
The roof over our heads, it may have it's faults but it is solid!
The free education my children receive. (although they take it for granted).
And many many more things that society and I myself have and we don't know how lucky we are!

Most of all. I get up every day and carry on without the aid of synthetic medication and I manage to put one foot in front of the other.
I will never go back to how I was in 2011!

Treading water

Over the last few months, you may have noticed, that the blog posts have been a bit slim on the ground. There are several reasons for this.
Not least the main reason is that I lost my Dad to a congenital liver disease. He was a very poorly man and finally lost the battle back in July.
Please excuse me, but I am sure you can all understand I have not really up to blogging.
I also have felt that I have not had much to say on the battle with fibro. I am still plodding on.
As you all know fibro is made worse by stress. with one thing and another the stress of the last six months has laid me low. I have had court appointment, financial worries, domestic appliance break downs, children who simply won't do homework and so on.
Now, the last thing I want is this blog to turn into a poor me page; and so I have had very little to say. I was always told that if you have nothing positive to say, then say nothing at all.
But after a few hellish weeks/months I am hoping things are on the up. One or two stressful factors of my life have reached a satisfying conclusion.
I am back with Slimming World and they are doing me the power of good. I have lost nearly a stone. It fluctuates a little but all in all it is working.
The 5-htp still works like a dream. I ran out but acquired and new consignment yesterday.
My family are wonderful. I am getting to see my siblings and Mother more than I was.
So as you can see, the fibro experiment is back in full swing. Here is to a healthier future. xxx

Limbs of Lead.

A sunflower because they make me happy :)

I would like, first to say sorry for my absence in the last month. I have been keeping my head down and getting on with my Massage diploma.
It's in the bag, so to speak. I'm just waiting for the results of the final and to book my last two clinic days.
I am feeling quietly smug regarding the diploma. I found it rather easy. do bear in mind that I had covered much of the course with the previous diploma in phytotherapy.
The down side is that due to excessive typing and sitting at the computer I am now suffering from "lead limbs".
I awoke in the early hours of the morning and couldn't bear to even have the covers over them. I have sore and tender skin and the muscles feel like I have run a marathon. The really painful parts though, are my arms. My elbows, wrists and fingers are throbbing and feel like they are swollen. I also have muscle burn in the tops of my arms.
No doubt a couple of days rest will cure this.
I can't see it stopping me from typing though. Painful though it is I have projects I want to make a go of.
Perhaps I shall just take things a bit slower.
I also spent a week or two without any supplements (I had squirrelled them away and couldn't find them, the joy of fibro fog).
Back too it now though.

Phyto Success

I would like to share my success with you all.
I am now a proud and happy phytotherapist. I even have certificates to prove it.
Quoted from the e-mail sent from the collage,
"Congratulations on completing the final examination for your Master Herbalist Level 5 NCFE Diploma course.
On behalf of the College we have reviewed your performance throughout your course and in line with NCFE regulations, your overall result for the course has been awarded a "DISTINCTION".
It is worth noting that this is the highest achievement you can achieve for this course. Well done on this excellent achievement, your effort throughout the course has been of a very high standard and we wish you all the success for the future."

I'm rather pleased.

Lovely Laugharne.

I have recently begun a stretch of work for CADW.
I am to play Lady Perrot the 16th century lady of Laugharne Castle.
To be honest I was more than a little daunted by the idea of two days on my feet giving castle tour to tourists. however, what a wonderful surprise awaited me.
I am now under the firm belief that more movement it the way to help with my back pain.
I am usually crippled by the pain and have trouble walking. suffering from extreme moring stiffness and it makes me a miserable bunny. I expected a weekend of having to smile through the pain and getting on wioht it.

Well, this was not the case. Don't get me wrong, Laugharne is not offering a miracle fibro cure with it delicious sea air. But being more mobile made a huge difference.
I also thing having DD on hand and being surrounded with happy people, full of enthusiasm for what I do was a huge boost to my mood.
It is always sunny Laugharne. Sun is our friend! Vitamin D and serotonin a  plenty makes for a happier fibroite.

DD and I fell in love with the place. There is more about that on the other blog however. Tales from the Tinyholding which is a much less fibro related blog. (Surprise, there is more to life than fibro).

So, the Laugharne part of the experiment suggests I should be doing more. Time to get the yoga DVDs out!

an article worth a mention

7 things not to say to someone in pain
What it says on the tin really.
Please feel free to post up some of the stupid things people have said to you in the comments box.
love
N x

What have I done so far?

Well, not as much as I would have liked. I have made lists and done some research but all while sat on my butt!

I can't wait!

DD and I are starting to cut things from our diets in the vain hope of getting into a better state of health.
I have realised I will need to keep barefoot for the foreseeable future to stop my feet reverting to their sappy softness as they do over winter. I have had my first few forays of the season out and about without shoes, and have realised, unlike DD,  I have a way to go yet.
I've been quite surprised by the amount of people who are shocked we are planning it barefoot. Don't they know DD and I? We wouldn't consider doing it any other way!
The sponsorships have started to trickle in. I'm very encouraged by this as we have 14 months to go.
A huge thank you is due to my dear friend, Ren.  The first words of encouragement and the first generous donation. She really is a wonderful person and I love her lots. I shall be holding her to her promise of meeting us at the end with a chilled glass of fizz!

Soapy Sensations' lovely foot scrub!

Obviously DD and I need to look after our feet and prepare for the long journey. DD is a bit prone to cracked heals and my feet have a tendency to become fibro sore on hard surfaces. Apart from the endless training we need to do, I have also invested in some wonderful soap to help us along the way. It comes from a lovely lady named Helen (all the best people are named Helen). She can be found here on Facebook. You can buy her wonderful products here, in her on-line shop. She hand makes all of her product and is a pleasure to deal with. Do check out her ducky soaps. Ducks hold a special place in my heart, ducks with soap? how perfect!
DD and I are also going to try to make sure we have plenty of photographs of our endeavours so they will, no doubt, end up here. Or perhaps on DD's website and blog.
FMA UK have been wonderfully supportive and have offered to cover both our progress and the walk itself. they have even offered to supply us with company and/or supporters from the various support groups. We will be sporting FMA UK t-shirts for at least part of the walk (five days in the same shirt could become a bit ripe).
We will be looking into B&B's or hotels soon enough. I wonder if any hotels would like to put us up for a bit of promotion here and through FMA UK? Worth asking do you think?
I also need to look into emergency shoes. I need something light that will stow away, suitable for walking and reasonably priced.
I doubt, and hope, I won't have to wear them. But if an hour in shoes enables me to do a few more hours walking, and many more miles, I may have to be sensible.
Although I am doing this to raise awareness of Fibromyalgia. I must not forget that I am a sufferer myself. I must keep an eye on my limitations to make sure I finish. Failure is NOT AN OPTION!

My next task is to cut the walk into sensible bites over five days. To plan our accommodation and stops.
Time to get my head down and start researching.

Charitable Challenge.

DD and I were sat listening to the radio on Sunday. There was a man on there who was proposing to walk the length of Hadrian's Wall for Sport Aid.
DD was saying how he would love to do this barefoot. Being a part time barefooter I agreed, and said that I would love to join him, but would my health allow it?
So here is the challenge. I don't for a second think I am going to leap up and walk 73 miles from the North Sea to the Irish sea.
But could I do it in a year's time?
Well, I think DD could probably walk  it over quite a short period of time. I don't see that as much of a possibility for myself, but what if I gave myself a few days? perhaps 4-5 days? or maybe less?
So it started as the idea of a holiday, then it grew and grew.
Why not start training with just a mile or two at a time to begin with?
Take in mini challenges along the way. Things like getting up Thorpe Cloud, at Dovedale. Walking from Oxwich to Three Cliffs Bay?
Most importantly why not get some sponsorship and do it for charity?
The obvious charity, considering the personal challenge would be FMA UK.
So here it is. Details of where we will be staying will be brought about at a later date.
Monday 6th May 2013 will see the start of our journey. Of course I will be sharing all my experiences with the training and the journey itself here on this blog.
If you wish to speed us on our way please give freely here

My right hand man

I promise I will never take DD for granted. He has had to work away this week and will be away most of next.
I know I don't take him for granted at the best of times. He is a terrific, understanding support. He encourages me in all that I do and is always there to do the little things for me.
It becomes easy to stop noticing the little things a caring family member or dear friend does for you.
I am fully aware of how many blogs, letters and articles there are out there that will rant at the "normals". I am quite capable of declaring that no one understands us unless they are like us. It is very easy to be swept along on the crest of a wave. Pouring venom over the fact that Fibro is an invisible crippling illness. Ranting at a world that constantly misunderstand and makes such comments as "you don't look ill".
Well, in the last couple of days I have come to realise that those nearest and dearest do know. They do understand, and they can become just as frustrated as ourselves with the silly attitude of others. The total prejudice against us from "official" platforms. It is these unsung heroes that support us when we have to battle to receive any sort of help from government bodies. It is also them who will hold your hand when you decide the pain is just not worth the fight.
My DD knows that I need to get on and apply for DLA and income support. There is no way I can go out to work at the moment. He also knows that I will do it in time and he will help with the forms and keep my mind "on the job in hand" when fibro fog renders me helpless. It is DD who also understands that now is not the time to take on the fight.
It is also the little things that help me through every day. He will bring me a cup of tea to take my pills with every morning. He knows I can't walk first thing and need to "warm up". He always carries my cup to where I need it to be. From the very first he knew I would spill half the cup due to shaking. Granted he does occasionally poke fun at the shakes. He also knows when to make make light of it and make me laugh and when to wrap his arms around me to stop me shaking my own teeth loose.
He can tell when I am struggling with fatigue and he will simply put me to bed. He never complains and he never expects too much.
It is himself who will look at the sun shining and know how it will lighten my heart to be outside. He will then coax and encourage. Say all the right things as I feel frumpy and pathetic hobbling along with a set of crutches. Tell me how pretty he thinks I am. He will remind me of days when we had walked for miles and remind me that soon we will again. Telling me over and over, that this is a flare up and we will work on stopping it taking a hold.
He is forever in support of me. He will become angry on my behalf at those near to me who make light of my pain. He will also remind me how pointless anger is and to just let it go. There are those who have made their views quietly clear. Assuming I don't do any chores and leave it all to him. He is the first to point out that he may well keep the cubs company in the morning but they are quite able to pour their own cereal. He will also tell anyone who criticises that I do my fair share and I cook for him daily. It is the one thing I can do for him! He loves my home cooking and it is the least I can do to show him I am grateful. Of course some days cooking is impossible. He never complains about the occasional pizza or fish and chips.
I know I can cope while he is away. However, he makes it possible for me to live while he is by my side. I don't want to just cope I want to live.
I do miss him because I love him. However, I would also like to take the time to remind us all that the loved ones who help us do need to cherished. They are not our carers. They care for us. They should never be taken for granted.
Not every "normal" misunderstands.
Fibro touches the lives of those who care for  us too. Let us not forget that!

What kind of pain?

There are several kinds of fibromyalgia pain. They can all strike like lightning when it is least expected, and can be crippling. Preventing the everyday life events from happening and being enjoyed, endured or simply experienced.

Some are easier to cope with than others.

Let's have a look and see where I fit in.

There are three medically recognised types of pain so let's start there.

Much of this information comes via this article by the way. However, no one is the same, so some are just mine. (How lucky I am!)

Hyperalgesia

"Hyper" means excess and "algesia" means pain.

In fibro any everyday pain you will experience is amplified. That niggling ache in you shoulders will feel like searing burning in fibro.  Just imagine how painful stubbing your toe can be when this pain is amplified up to ten times. 

Personally, I find I do very well in not swearing too much when things like this happen. We all know how clumsy one can be after a poor nights sleep. Add to that a tendency towards dyspraxia and being bust heavy and you can imagine how my world is a world of bumps and bruises. 

The majority of GP's prescribe SSRI's (prozac and other anti d's) to combat this type of pain. The idea being to reduce the sensitivity of the pain receptors. In my own experience this type of medication numbs everything. Okay, I found the pain was less intense. However, so were my emotions. I couldn't get really excited about anything. I put off today what could be done tomorrow constantly because I didn't have the sharp emotion to deal with things. It is only since leaving these behind I have come to realise how numb to the world I had become.

Allodynia

This is one of the types of pain I really struggle with. It is the kind of pain that makes you skin painful. It is a relatively rare pain in most people but common to certain conditions. Things like shingles (also connected to the Epstein Barr virus as fibromyalgia it thought to be in some circles) Migraine, and neuropathy. Personally, I suffer with migraine and it is then that Allodynia is at it's worst. Even a caring and sympathetic hug from a well meaning loved one can become a minefield. No one in their right mind would want to snub the caring arms of the one they love. Who would not worry about causing upset and make them feel they are not helping. However, when you feel like your skin is trying to remove itself from you frame by shrinking and burning then it is also difficult not to leap away at the touch and weight of a someone trying to hold you.

If you have trouble putting clothing on because you feel like the fabric is filled with prickly barbs how are you supposed to get dressed?

I am sure many of you have suffered bad sunburn at some point in your life? Well, that is how it feels.

I personally put this kind of pain in my “sensitive to everything” folder. When the world around you just hurts!

*Allodynia is believed to be a hypersensitive reaction that may result from the central sensitization associated with FMS. The pain signals originate with specialized nerves, called nociceptors, that sense information about things like temperature and painful stimuli right from the skin.

Allodynia comes in 3 forms:

1. Tactile, which is pain from touch or gentle pressure
2. Mechanical, which is from something moving across your skin
3. Thermal, which is pain from heat or cold that's not severe enough to damage tissues

Some drugs that work for some people with allodynia include:

• Tramadol
• Lidocaine
• Ketamine
• Morphine
• Venlafaxine
  
  *taken from the above article
  

As we all know I much prefer a more natural and complimentary approach to medicine. I would be more inclined towards herbal topical creams. Capsaicin is the active ingredient in chilli plant.

It is actually an irritant. It works by reducing substance P in the body. This is the main chemical involved in transmitting pain impulses to the brain. However, due to it being an irritant it is important that it is not used too much. Indeed, it does come with a recommended dose. The very nature of the beast with capsaicin is that there is always the risk of it making this kind of pain worse instead of better.

Personally, I quite like Tiger Balm. It even smells nice. It contains all natural ingredients. Menthol, Camphor, mint oil, Cajaput oil, Clove bud oil and Cassia oil. All oils and plants that are reputed to have a soothing effect on sore muscles and raw nerves.

Painful Paresthesia

Paresthesias are odd nerve sensations that can feel like crawling, tingling, burning, itching or numbness. Sometimes, these sensations can be painful and aggravating.

There have been days when I have been able to sympathies with ancient slum dwelling people. Crawling with lice and fleas. I can be perfectly happy and then find I will spend hours at a time feeling like I have something crawling over me. It's horrible and trying not to scratch is almost impossible. However, succumbing to scratching will invariably cause me to feel sore and kick off the burning skin feelings. Gah!

Capacin cream can again help here. As can vitamin B12. I take a complex of B vits daily. It's got to be helping...right?

Personal pain 

For the rest of the article they talk about personal pain. One that it mentioned is titled Vodoo pain. It describes the sudden stabbing pain we fibro sufferers are all too familiar with. Personally I tend to get this in my ribs. A sudden feeling of being stabbed. It takes my breath away. I have also found that I will get a stabbing pain now and again around the middle of my monthly cycle. It will be just in one side over where my ovaries would be. In my head I have always linked it to ovulation. Perhaps I pop when a new egg is released :)

The next pain mentioned is “randomly roving pain”.

I assumed all fibro sufferers had this. It is typical when being asked what hurts I will say "my shoulders", for example. Half an hour later it could be my thighs. Pain rarely stays in one place unless it is related to a pain I would have without fibro. I constantly have back pain. At the moment it is so bad it is stopping me walking, keeping me awake at night and refusing to let me be comfortable. This is due to a back problem and it is exacerbated by fibro. This pain doesn't move.

However, I also have aching thighs today. Perhaps tomorrow or even later on it will be elsewhere. The excitement knows no bounds...

Then there are the pinprick pinches that happen. Sort of like a mini version of the vodoo stab. Just a sharp prick now and again. Usually in my arms and hands.

*Fibromyalgia Pain: Rattled Nerves

Most people won't understand why I call this a type of pain, but I'm sure most fibromites will get it. Certain things tend to get my whole body on edge, jumpy, and feeling rattled. It makes me ache all over, and sometimes I get nauseous, dizzy and anxious. Things that rattle my nerves generally involve sensory or emotional overload, such as:

• Certain sounds (repetitive, loud, shrill, grating)
• Visual chaos (crowds, flashing lights, busy patterns)
• Stressful situations (busy traffic, confrontations, fibro-fog induced confusion or disorientation)

When my nerves are rattled, I try to get out of the situation as quickly as possible and relax, preferably somewhere quiet.

*cut from the above article

Reading this has been somewhat of a revelation to me.

This is where my “sensitive to everything” folder comes out. I always know when fibro is getting on top of me because the silliest things can irritate me and leave me exhausted and in agony. The saddest of these is hearing my children shriek and laugh while playing. It's not because I love them any less or want them to stop enjoying themselves. It's because the sheer erratic high pitched squeal of youngsters leave my nerves jangling. I would love to keep a quiet household. While they were younger I mostly did. However, as they get older they become more boisterous and louder. My dear sweet daughter leaks noise constantly and it drives me potty. But, I will never stop them. My fibro will not be their cross to bear.

I also can't stand loud music. I love music but too loud and I am so rattled I can't concentrate on what I am doing.

I hate cities. So loud and smelly. Such a nerve jangling array of life simply makes me want to curl up and die. It makes it hard to believe I grew up in such a large and vibrant city.

The smell of strong flowers, such as lilies (one of my favourites), the sound of birdsong in the morning, and so many other things I usually take such joy in can make fibro so much worse if I am having a flare.

So all in all there are far too many things I can be affected by to avoid them all. I don't want to live in a bubble.

I shall keep on keeping on. The power of positive thinking and support of my family will carry me through.

I will also keep my complaining to a minimum and take myself to a quiet, dark room when things get too much.

There is a huge upside to being very sensitive........But that is another story and one I'm not sure I'll share ;)

Setting goals.

There is nothing like setting a goal to speed along weight loss.
DD and I have decided we would like a weekend break to Centre Parcs for a joint birthday pressie in the beginning of May. Lord knows we need one. DD is working more hours than any man should be allowed and I am feeling run down and off colour.
The problem is that out last holiday, also to centre parcs, was over 18 months ago and I weighed considerably less.
I love walking through the country paths and not to mention cycling. Well, the very idea of my climbing on board a bike at the moment is laughable. First, I would need a reinforced frame. Second, I would look a sight. Third I would be agony.
The next issue. Swimming. Who would feel confident in a swimming costume in my state? I sure as hell don't.
Now there is no way I will get to the prior weight in just eight weeks but losing 3.5 lb a week is doable.
I could shed two stone in the given time.
I have started as I mean to go on. I am about to do the on-line food shop, and I will NOT be buying wine. 
Lord, give me the strength to do this.....

in the spirit of positive thinking

I just thought I'd share a thought for the day.

Disturbed sleep leads to a poor sleep pattern...

I have spent several evenings in the recent weeks keeping my beloved company while he has to do an all nigher for work.
It's far from ideal but He is always there to support me and helps in every way. DD likes his sleep and when he is tired he finds it hard to battle on. So, I decided that the least I can do is help him with the battle.
The problem is, my already precarious sleep patter is now all gone to hell again.
Twice in the last week I didn't sleep at all.
Being aware of my tossing and turning, not mention the huffing and puffing turning over in bed creates due to back issues, I eventually got up and did a few chores.
Last night I decided to combat this with a dose of over the counter sleep aid. It did nothing.
After four hours I tried a second dose. Still had trouble getting off. Around 3.30 to 4 am I finally fell asleep.
Then I woke up at 6, then 7, then 8, then 8.30 then 10.30 and got up around midday.

Being tired is making me a grumpy bunny.

I will try to get a better night tonight (as I always do) I will dig the valarian out and so on.

Here's hoping

H x

A day out at Dovedale.

Today heralded a clear, blue almost spring like sky. The sun was shining, the birds were singing and only the most nocturnal among us wouldn't desire to be outside.
I long for the warm balm nights of Summer time and the hot humid days. I crave the sunshine and feel so much more a part of the human race in the warmer weather. I also love to see the spring bulbs poking the heads above ground, the spring lambs dot the fields and watch the green hills turn from bleak brown/green to such a lush green you feel the urge to roll down hills with the kind of abandon you had as a child (well I did anyway)
On a day such as this there was only one place top be, Dovedale!
After a late breakfast of scrambled eggs oin toast we loaded the chillun and pooch into the car and made our merry way there. The view of the rolling hills of the Derbyshire Dales as our backdrop, even the drive there was a pleasure.
Of course in try fibro flare up style I was exhausted before we even arrived but, I still had a smile on my face. A day out was just what the family needed. Time to relax and enjoy each others company.
We parked up and there came my first challenge. I got out of the car and eyed the crutches I had loaded into the car with loathing. Now, I faced a choice. I could shun them as I have done thus far. To proud and stubborn to give them a chance. Or I could use them. As ever, DD came to my rescue. "What if I carry them and you can use them if you really feel you need to?"  He really is perfect :)
It didn't take a great distance before the pain in my back, hips and legs wiped away any trace of vain pride and I was using them.
"Well DD, this is the day I admitted defeat" Was my comment with a rueful smile.
"Not at all! This is the day you used the tools you have to improve your health"
I do believe that every girl diagnosed with fibro should be prescribed their very own DD! Anyway, enough of singing his praises ;)
Unlike a recent trip to Carsington Waters, I made it for a good mile and a half or so. We crossed the stepping stones and the Pooch had a wonderful run. Although, she did act the tart. She is clearly coming into season and one or two less gentlemanly pooches noticed.
The Chillun climbed Thorpe Cloud while DD and I took the pooch along the river, and then back to wait for them at the bottom of the wee, little mountain.
We had a leisurely drive back home and I decided I would have a quick 40 winks before making dinner. I ended up sleeping for two hours but felt better for it. I made us a hefty cottage pie with gallons of veg. then the chillun hopped off to bed.
I have had a splendid day. I am in agony now (of course) but I feel like this time I have earned it.
The chillun may have climbed Thorpe Cloud but I have also conquered one of my own mountains today. The crutches may not be my idea of chic style but they do at least get me from a to b with less fuss.
Throw out the pride and embrace achievement!

Feeling flat.

I'm tired and achy. I feel totally flat. The weight is fluctuating but not really disappearing.
It's days like this I really realise I have a chronic syndrome and it ain't easy. I'm not one to want to moan to everyone and feel the power of positive thinking goes a long way.
Well, today I am moaning.
For those of you who read this blog (whoever you are) I hope you find it a positive and informative place. I am more than happy to wax lyrical for hour upon hour about the benefits of being synthetic drug free. I am happy to count my blessings and keep a silver lining on my world.
However, that would not be a realistic picture of fibromyalgia. There are good days and staying the course with positive vibes is essential.
But, today I hurt. I have had a few weeks of differing stressful times. Just the basic raising of two pre teens can stir up enough emotion and exhaustion for any parent. There is the world of chasing them to do homework, raising them to have respect for their environment and the people in it and of course just making sure they pick up a bar of soap once in a while.
On top of the normal stresses I have also had the worst cold I have had in some time. I still have horrible blocked sinuses that are giving me a headache.
Then there is the world of useless solicitors. Making a reasonable simple procedure (that could have taken six weeks but has taken three years) into a minefield of recrimination and emotional turmoil.
I just want to curl up and hide from the world. I don't want to socialise, I don't want to do anything. I can hardly keep my eyes open to read a book.
My fingers ache and feel like they are the size of sausages. I have shooting pains in my thighs. My joints burn and I just want it to stop.
ho hum.
Time to paint a smile on my face and go to the shop. Then make dinner for my family.
When can I go to bed?

top 9 reasons for a flare up

this list is not my own work but I certainly feel it should be included here.

In a nutshell, here ‘tis!

Anything that worsens your symptoms, can cause a flare.

Here’s a quick list of what may bother you and play a role in a symptoms flare:
1) Foods that don’t “feed” you (processed foods, fake foods, foods to which you have an allergy or intolerance)
2) Physical trauma (no matter how major or minor)
3) Unhealthy thoughts (what’s spinning around in your mind?)
4) Relationship difficulties (drama, worry, anxiety, etc.)
5) Lack of fitness/muscle tone (the body needs daily movement!)
6) External toxin exposure (pesticides from the lawn, laundry soaps, scented candles, perfumes, etc.)
7) Internal toxin exposure (dentistry, pharmaceuticals, immunisations, chemical dyes/food additives, etc.)
8) Infections (have you had a cold or flu lately?)
9) And, of course, an over-arching theme of stress…no explanation required.

I know, I for one, can tick more than one of these boxes. I also know there is room for improvement. Here is a quick review of how I get on so far.

1. Foods that don’t “feed” you.
Well, I am a huge advocate of whole foods. I cook from scratch with organic fresh ingredients. I try to work by the eat well plate rule. A little of everything and not too much of one. I am not much of a fan of processed prepacked foods and don't tend to cook it even for the family. We all eat together and we eat at the table. That is the rule.
2) Physical trauma.
I am one of the most clumsy people I know. If there is a wire I will trip over it. If there is a step I will fall down it or trip up it. If there is a ledge I will bump it. My son suffers with dyspraxia and when having him assessed I was told it is very likely he got it from me.  I do try to take more car4e but clumsy is clumsy and not much can change that. However, I am also becoming more accident prone because of my weight. I find my knees and ankles don't like to hold my weight and give way. I am also not very good at judging spaces now I am wider. I guess I put on the weight so quickly I never got used to being wider. This is being remedied. Slowly but surely it is coming off.
3) Unhealthy thoughts.
I assume by this they don't mean in the Catholic sense. I'm not giving that up for the world. I am however, prone to letting "the little things" bother me. I am learning to let them go. Life is too short!
4) Relationship difficulties.
I have a beautiful relationship with my wonderful supportive partner. He is sent from heaven. He understand me and cares for me. He supports me and is always by my side. I am very lucky! I have a wonderful relationship with both of my children. They are good kids with a strong level of empathy, manners, and caring. They are also typical young preteens and we do have the occasional drama but we never go to bed on an argument and when it comes down to it. They are lovely. Again, I am lucky!
I do have a stressful tie to the Ex husband. This in time will be broken but it does cause me anxiety. 
5) Lack of fitness/muscle tone
Here is my biggest problem. Due to weight and a poor sleep patter this has become a problem. I am very unfit and have poor muscle tone. This can and will be remedied in time but it is making exercise a chore and the weight isn't helping. I plan to start swimming next week. This has always been one of my favoured types of exercise and one of the most efficient, I have found. When the fitness level has risen slightly then I plan to return to yoga.
6) External toxin exposure.
I can't do much more about this one. I don't tend to suffer too much from environmental toxins but I do live in a rural community. I like perfume but don't seem to suffer with my choices. I like a light spray and a light scent. I do find strong perfumes in built up areas (we have all experienced the over scented middle aged woman at the shop counter) is guaranteed to give me headache. I also can't stand artificial room scents and candles. They make me feel sick.  There is no way they would come into my home. I have plenty of essential oils if needed.
7) Internal toxin exposure
Back to the organic, whole food cooking. I have that covered. I also avoid anything with sweetener, particularly aspartame in it. (you would be amazed by how many children's medicines and vitamin tablets contain this chemical). Green peppers are a no go as technically they are not ripe so contain a high level of solanine. All Solanums contain this and this is the alkaloid that causes nightshade to be poisonous. I should reduce the amount of the solanum found in tomatoes, potatoes, aubergine, peppers, paprika, gogi berries. The rule of thumb is that the greener they are the higher level of solanine.
However, I'm not quite ready to give up tomatoes and potatoes just yet. I shall reduce them though.
As for synthetic medication. Well, we all know the answer to that. If I hadn't started by cutting these out we wouldn't be here reading this blog.
8) Infections
We all get coughs and colds. However, I am sure any fibro sufferer will tell you how a simple sniffle can seem like the flu. I can't and won't live in a germ free bubble. Avoiding anyone with the slightest sniff.

9) And, of course, an over-arching theme of stress.
This one is my kryptonite. I was once told by a GP to "avoid all stressful situations". Oh, how I laughed. I was, at the time, a single mother of two youngsters.  Fighting a messy divorce, sick parents, no income (I was on the sick with no sick pay), a house that was falling apart around my ears, debts up to my eyeballs....
Sure, I'll just avoid that stress!
Things are so much better now. Stress still catches me unaware though. I need to let the little things go, worry less about what people think of me, finalise this blasted divorce and improve my health. all things I can take care of myself.

All in all, there is nothing as liberating as taking control of a situation. I feel I have come a long way in doing just that. With the power of positive thinking and the support of dear family and friends I can only get better!

5-htp

5-hydroxy tryptophan, is a naturally occurring amino acid and chemical precursor as well as a metabolic intermediate in the biosynthesis of the neurotransmitters serotonin and melatonin from tryptophan.

It is sourced from the seeds of Griffonia simplicifolia. A woody climbing shrub native to West Africa and Central Africa. It grows to about 3 m, and bears greenish flowers followed by black pods.

You can buy 5-htp over the counter of most good herbal shops. However, as with all complimentary medicine, you get what you pay for. If you buy a cheaper version you will find the strength greatly reduced.

It is used widely across the western world as an antidepressant, appetite suppressant, and sleep aid.

In fact tryptophan is one of the key ingredients of many SSRIs. In using 5-htp you are simply stripping away many of the unnecessary chemicals you find in modern anti deps.

5-Hydroxytryptophan converted into to serotonin by the natural body enzymes. Therefore adding more 5-htp will increase this pain relieving chemical the body naturally produces.

Though 5-HTP is found in food only in insignificant quantities, it is a chemical involved intermediately in the metabolism of tryptophan, an amino acid found in turkey, milk, potatoes, pumpkin, and various greens. However, it has been commonly found in fibromyalgia patients that there is a significant shortage of tryptophan and serotonin present. Supplementing this lack can only be a good thing, in my opinion.

There are cautions, of course. 5-htp is contraindicative with many modern medicines. It should never be taken alongside an anti depressant as it can cause serotonin syndrome. Also, along side tramadol is may cause fitting and/or serotonin syndrome.

*It has been suggested that 5-HTP may cause eosinophilia-myalgia syndrome (EMS), a serious condition which results in extreme muscle tenderness, myalgia, and blood abnormalities. However, there is evidence to show that EMS was caused by a contaminant in early 5-HTP supplements, before the introduction of the current Good Manufacturing Practices by the United States FDA in 2007. Many countries now employ similar regulation..

* Wikipedia

I am, myself into my third day using 5-htp. So far all I can say is IT WORKS. I feel so much better. Aches and pains are less (not gone). Energy is better.
I'm still fiddling with dosage and timings as it can make you drowsy. I am looking at 50mg in the morning and 100mg at night.
Stay tuned folks and we'll see how it goes.

So far, so good.

Two days in to the big push.
I have made a delicious pan of butternut squash soup which has kept the hunger pangs at bay.
1 butternut squash
1 swede
1 red pepper
1 onion
1.5 pts of chicken stock
1-2 tsp dried tarragon
1-2 tsp ground nutmeg
salt and pepper

chopped roughly and simmers until cooked. Then blended until as smooth as you like soup. Add a bit more boiled water if it is too think for your taste. (I like my soup gloopy)
yum, yum, yum and not a calorie in sight. (Well, no fat at least)

Tea time has consisted of grilled fish. Sea bass last night and mackerel tonight. Both times served with potatoes and tomatoes backed with a generous splash of balsamic vinegar and enough olive oil to ensure the vinegar didn't burn. Topped off with lashings of fresh green salad.

I have had breakfast (cereal and semi skimmed milk). No bread and no wine.

Go me!

I've been a very good girl!

The spoon theory

I have just been reminded of this wonderful theory by a friend on Fb
I thought I'd sare it here.

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

The next step

Well, the dieting isn't going very well. I still feel and look like a hippo with a liking for ethnic prints. I still feel like I am hauling around an extra person. There is indeed a thin girl in me. It just looks like I ate her!

Over Christmas we visited a friend who has a lovely bathroom. Of course after an indulgent shower, who can resist the scales sat lurking under the edge of the bath? With trepidation I dragged them out and with my eyes closed I stepped on. I was surprised at not hearing the cracking sound of the glass as I placed my second foot on. Then, slowly, oh so slowly, I opened one eye and looked down. After craning my neck to see my feet (not something that I have done much of lately) I focused on the flashing numbers.

Now, just two years ago when DD and I started out relationship I was under 12 stone. I spent the primary months of our relationship walking cliffs, beaches and woodland walks. Now I can't walk the garden path or the stairs without puffing like a Victorian Steam Train. To my horror I found myself a little under 17 stone. Five stone in two years? I can's seem to stop flip flopping between tears and laughter over it. 5 stone! It's  unbelievable!

The synthetic meds I had been put on 18 months ago have almost halted my metabolism. My diet has not changed very much. In fact it's possibly healthier. I no longer indulge myself with the all too often take out. The Chippy tea is nothing more than a rare treat. Granted DD and I do like a glass of wine or two but not to the level of that kind of weight gain.

I have stopped all the synthetic meds, as you, dear reader, well know. I am not fully recovered from the damage I felt they were doing. I'm not feeling a great deal better but I do have more good days and what is the point of filling one's body with chemicals if they don't help in any way?

Today I have  made a step in the right direction. I have held up the white flag of private struggle and asked for help from friends and family. Just the odd word of support and encouragement can make a world of difference. I have cut down on bread (this was no mean task). I have cut out caffeine entirely.  The wine consumption is hugely reduced to weekends only. (That will reduce further)
To cap it off today I went for a walk in Matlock Park with DD and the Pooch. The Pooch is good for exercise as not only does she need walking but she is too stupid to bring back the ball she loves to have thrown for her so you are never still.

I also picked up a supply of  5-HTP. (5-Hydroxy Triptophan) This amino acid is said to help with fibro, insomnia and even boost the metabolism while suppressing the appetite. There will be more on my findings of this supplement to follow.

Wish me luck!

Today I am 16 stone 11 lb....