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

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 ;)

in the spirit of positive thinking

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

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!

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/

Memories of Dance.

From my earliest memories I remember standing on my Daddy's feet. His steps guiding me through the two step, the polka and free form. I have memories of Christmas where Pa would dance around the kitchen with Ma in his arms. Bing crooning White Christmas on the record player, and the lyrics dripping, like silk from Pa's lips. They would hoist me up into their arms and I would sit between them in a complete circle while my nonchalant older brother declared it lame (or the 70's version). In later years it was, my younger sisters sitting in their arms, but I gained the prime position in Pa's arms at family weddings and parties. Of course, when the smoochy numbers hit the decks Ma would be the only woman in his sights.  But when the hits were playing he was all mine.
As I grew older I found favour in the arms of my dear and trusting cousins. One in  particular would guide me around the dance floor and declare me the most beautiful girl in the room. I never felt more safe and cherished, except in my own Pa's arms. God bless you Simon. I now fully believe he was a very kind and proud cousin. He would not allow anyone near his Uncle Steve's girl! What a guy!
Still my Pa and I had the dance floor at weddings and parties. But I was now of an age where dancing all night involved girl friends and night clubs.
Jones and I would down a bottle of cheap plonk before we went out, due to our limited cash flow. Then we would hit the town, frequenting the "alternative" clubs. Those of you who have a history in Cardiff will know Bogies, The Square Club, Subways and of course Metro's. I spent many a drunken night there. Drunk and debauched! However, my night would consist of about three drinks and dancing all night with Jones to the music that "defined" us. Later there was the Hippo club. Again, all night dancing.
I don't think I have really realised how much of my life has been taken up with dance. All of this, so far has been nothing more than a way to entertain myself. I love to dance. Some say it is a way of self expression. Personally, I think it is more a way to loose yourself.

Then I come to later years. I have danced around he kitchen, living room and bedroom with my two children. In their early ears they have known what it is to follow a rhythm. They have been in a loving pair of arms and felt the flow of music. I do not feel they have missed out.
Then there is the later years. Just a few years before fibro I found a love and a need to study historic dance. I have danced on the high streets of towns, such as Carmarthen and Monmouth. I have led children by their thousands through the Pilgrim's brawl and the Horses brawl. I have taught drama students to Volta. I felt I had found my bliss. I love the way music can shape us. It can bring peace and harmony. Similarly it can stir the emotions. Music is the work of angels and I love it.
One thing I feel fibro has robed me of is dance!
DD does not dance. He does not feel comfortable dancing and it is not his forte. I cannot dance!
We have been, this evening, to a 40's night. We have had a wonderful time with our friends and neighbours. We took the cubs and they have had fun.
I have sat and watched people twice my age dance. Stepping gracefully and jauntily to 40's tunes with loved ones in their arms. I know that if I could hold myself up and tall long enough I could have led DD in a dance. We could of moved to the rhythm and cut a dashing image in the crowd.
Alas, no chance. My back is agony! I can't even walk up a fight of stairs without wheezing. A turn around the dance floor? You have to be joking!
Will this last forever? I bloody hope not!

A walk on the wild side.

Yesterday evening saw myself and DD with a rare evening out. It was bliss to be out and having fun. We accompanied his Ma and Pa to a wine tasting evening. 72 wines and only 2 1/2 hours to taste them in. Can you imagine? However, sensible DD and I merely chose the few we thought we would like and those we were curious to try. I assure you, we tried some truly delicious wines.
After standing near the wine counters for around ten minutes in my wonderful killer red heels I started to gaze with longing at the central table and chairs. I dragged DD's ma, J, along with me on the pretext that she would be better off sitting while the men waited on us. Let's face it though. We all of us with fibro know it was an alternative motive that sent me tableward.
we settled ourselves down with out charts and glasses and the men fold did a sterling job of looking after us. (I'm not such a feminist that I can't accept help from my DD) Unfortunately we appeared to choose the table with the crazed drunken Irish woman sitting at it. There is always one and they always find me. She proceeded to tell us at least 30 times that she would never spend over £5 on a bottle of wine and she was only there for the craic. now is it genuine human nature for her to aggravate me like sand paper being rubbed over my teeth? Or was it the "aggravate everything" syndrome showing it's ugly head? Fortunately I have been raised to put on a polite mask and be nice so I didn't tell her to push off. To be honest she was vaguely amusing.
After our civilised gentle tipples we decided to go and find something to eat. We went to the Royal Hotel in Nottingham. It had all the ambiance of a morgue when we arrived. It was so empty they had shut the restaurant and just opened up a few tables in the lounge. Unfortunately I was finding the back pain caused by walking unbearable so we stayed and ate there. Luckily the ambiance picked up after half an hour or so as more people arrived and dinner was lovely. An evening meal that threatened to be a bit flat turned out to be very nice indeed.  It irritated me somewhat the DD's older parents could have quite happily moved on to a better location but my pesky pain put a dampener on out hunt of a suitable eatery.
God damn you fibro. Stop making me look like I'm an aging cripple. I'm still in my 30's for goodness sake. Give me a break!
A fab evening with DD and co though :)

A dynamic change.

Ok, so here I go.
I've decided to keep this blog because I want to see the difference and keep a not of the changes I make. I want to be able to look back to find inspiration and to see how I have made mistakes. I want a document of my journey with fibromyalgia.
I am currently at the worst (health wise) that I have ever been.
My home life is wonderful, my relationships with those I care about are giving and nurturing. I do have stressful aspects to my life. There are one or two loose ends that need to be tied up. I hope tying them will make a difference.
However, I feel a frank and honest account of my health and lifestyle can only be a good thing. In addition by having it on-line I hope others will find it helpful.
I am only 37 and feel about 80. I have a long life ahead of me (I hope and want to live it to the fullest. I want to have a life of creating wonderful memories and collecting cherished smiles. Both from myself and those around me.
My beautiful children deserve a childhood filled with joy and laughter, not a mother who is permanently in bed or in pain.

My darling A (the sparkle in my life) is a wonderful and giving human being. I will always do my best to keep our relationship happy and fulfilling. I will never take for granted how good he is at dealing with my illness and being understanding and caring. Due to all these qualities he deserves a partner he can share life and adventures with. We love the outdoors and he deserves to be able to enjoy them to the full extent rather than a touch towards it and tiny wary steps.

I plan to make some changes. Some of them big and some of them tiny.  I plan to take them one step at a time.
I was once told by a very good friend the one teaspoon at a time a person can move a mountain. It's time to raid the cutlery draw and get on with it.
Wish me luck!