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.....