A change of focus.

Season of change.

It's been a while since my last post but in that time something has been happening in my head. I have decided to take more control be more assertive than passive. It's time to pick myself up and change my focus.

Getting my diagnosis and everything that came with it seemed to strip me of my confidence. I had previously been a very confident happy go lucky kind of girl but it seemed like getting a disability stripped that away. You see you have so many knocks and go through so much that there comes a point that it grinds you down. It ground me down and wore me out physically and emotionally. It's time to fight back!

                       

I have changed my focus and decided that I need to regain some control. The fibro took my control and as a person who liked to be in control of things the feeling of being out of control depressed me. What I have realised it that I can regain control not necessarily in all aspects of my life but that doesn't mean that I cannot change and take control in other areas of my life.

It's coming to terms and gaining acceptance over your limitations and adapting. I have to not let my limitations be my focus and then give up in despair or frustration. My life has ended up taking a different path but doesn't mean that path is any less of a path.

                     

I have recently been away on holiday and the time away from home gave me chance to rebuild my confidence in myself and what I am capable of. Getting away gave me time to sort the blur that my head seemed to be in. I have had so much going on in the past few years that I had been on an auto pilot as a sort of self protection mechanism. I had to cope I had to get through but you cannot always remain on auto pilot.

Holidays.

 Going away always does me the world of good. I enjoy having more family time with the girls and I always seem to sleep really well when away. I don't know if it's the sea air that helps but I have no problems getting to sleep. The girls run me ragged on holiday but it's worth it to see the enjoyment on their faces!

We have such a good time, meeting up with friends, joining in with activities and just generally a change of scenery. I even get a social life on holiday and get to play bingo which I love! The only problem is that both the girls and I need to be dragged back home. I think it's why we go back so much to the same place! Next time we go back I would like to order some sun and warmer weather!

                                   

                          

                                     

                                     

                            

Face in the crowd

Like a double edge sword.

I used to fit in. I used to be able to go about my daily business  go to work, ride the bus, go shopping and such as just another face in the crowd. It seemed that you were almost invisible to those around you who didn't know you, strangers just passed by without a second glance.

Now I stick out! I am different. People will look, do a double take or some even ask questions unable to get their head round the fact this is a lifelong condition. Everyone wants to know your business  Nothing is private. The government has whipped up a storm about all these disabled benefit scroungers and now nobody believes anything. You're a fraud, a cheat, a scrounger, too young to be like that, in it for the money are just many of the things they say.

The crowd can turn into the mob. People can get abusive towards those who they see as easy targets. The disabled. The mob shout, swear, question as if they have been made judge, jury and executioner.  You see it's OK for them to do that in their view, I mean there's all this talk about these scroungers!

                              

The 'Scrounger'.

The so called scrounger the person who not only has to suffer with their debilitating condition but then has to tell the world and his wife the most intimate details about themselves. This getting disability money lark isn't all that easy let me tell you. You have to basically humiliate yourself in telling complete strangers just how much you suffer and how you need help only for them to basically turn round and call you a liar! So then you go into even further detail for someone else to look at your case and so it continues until you have told so many people about what's going on with you and filling out that many forms all for them to call you a liar!

The disabled person has to fight constantly battle against the cuts. Of course it's easy they have all the time in the world to fill in their forms I hear you say. Not so. Real people who are ill struggle with their forms and cannot do them or cannot get them done to the specific wording despite their debilitating conditions. They often get less than they should or give up because they are too weak to fight. Too busy battling their constant health struggles. But fight we must!

                                                

The fight.

So I have begun my fight. I have been rejected. No DLA. Basically everything I put in my claim was discounted. I have now asked for what's known as a reconsideration and I am in the process of trying to collect my evidence. The fight is draining but I will do it! I am in this pain, I do have these medical conditions wrong with me and they do impact my life!

                                              

Labels.

When you're disabled your immediately labelled. Labels become a bit like a collection you just seem to keep getting more and more. The current collection that has recently been building up is that of my illness labels. I have now been labelled with Chronic fatigue syndrome/ME and depression. More labels in turn mean more pills. I have started my new so called happy pills and they make me feel sick. Thank goodness I am not on a higher dose. I have some extra pain pills aka 'smarties' well actually co-codamol but they don't really do much for me well except give me constipation. It's supposed to help with the pains in my feet for which I am now seeing Podiatry (foot people) for. Apparently I am walking funny on my feet on the outsides. I have also gained some new insoles to add to my equipment collection. I have also begun filling up my diary again but only with all these new appointments.

I have been having chest pains which they thought was my liver or gall bladder so I had scans on them but they seemed fine but I will have to go back and see the GP. Personally I think I know what it is dr Google says it's costochodritus and as it's another thing common with people with fibro I am likely to agree. Also I am trying to achieve my all time top referral high score badge for the most departments referred to within the space of 3 years. I am now being referred to a specialist ME clinic. I think I am at 10/11 different specialities now. Joking aside half the time it feels like I am falling apart and I keep being passed from clinic to clinic as each one can only sort a small bit and not look at bigger picture!

The untold truths. 

I think there are a lot of untold truths when it comes to disability. Things that we don't speak about as we are too embarrassed to tell. Often people ask but they don't really want to hear the answer. Not really. Those who are not disabled live in blissful ignorance of the struggles people face each day. I have been thinking a lot about this lately. I think people often ask 'how are you' without really wanting to know the answer. People haven't seen you for months, you quite clearly look ill and yet when you say fine or something along those lines it seems to be what they want to hear and quickly move on.

This therefore creates things about illness that are rarely spoken about. Take for instance depression - lots of people get it yet how many people talk about it? Often the worst thing is for a person to become lonely and excluded. Illness is a part of someone with a disability, it is their life. I am not saying all you should ever talk about is that but it is a factor and if you want to be friends with the real person then you have to hear about their illness/disability too.

                         

If you really want to try and understand someone with chronic pain try reading this article:

http://www.wikihow.com/Understand-Someone-With-Chronic-Pain?fb_action_ids=10151642090210561&fb_action_types=og.likes&fb_source=aggregation&fb_aggregation_id=288381481237582

However, the best person to speak to is the person who it affects!

Plodding.

This is my word when I am asked how I am. It's generally used in combination with other words in reply to the question how are you. 'I'm ok just plodding along' tends to be the most well used. The funny thing is I don't plod I hobble with either my crutches or my walking stick! Maybe even more of a shuffle. Never a plod. But yet here I am uttering these words. I tend to think as it's I know people don't really want to know so I give that answer. Well all except all the old ladies wherever I am. It's like bees round honey they'll chat all day and tell you everything. I have figured now it's just that they too need someone to talk to. It's as if they have excepted you into their club. I now look upon their chats as friendly and join in... today I heard all about foot problems and another told me all about why she was going for a blood test. They just need someone to listen to them and they probably haven't got anyone else.

                               

Drifting.
In the middle of an ocean drifts a make shift boat. The  boat is half battered from going through some major storms. Half battered but still afloat. The island it launched from is still in view in the distance but you can only just make out it's shape on the horizon.

As if recharging her batteries the boat gently drifts in her new direction. The map long since gone, lost in some storm or another but a map doesn't seem to be as important to the captain as it once was. She has learn't that a map is useless in all the storms and you just have to let the tide guide you. You can't fight the tide.

The boat launched without warning but had what seemed like a good crew on board. However, as the seas got rough and their interests changed most abandoned ship. The boat has picked up some new crew members along the way, with insider knowledge about this boat. They have also helped with some of the repairs on the boat.  Yet still the boat drifts along expecting another storm whilst still being battered from the last never being able to fully repair itself.

                             

If I was to be asked how I feel honestly right at this moment I would answer that I feel like I am drifting. I feel like I the captain of that boat heading into unknown territory. Leaving life as I knew it far behind. Disability/ illness launched the boat I was never planning on leaving port! There are so many time when you feel alone, abandoned by crew mates so called friends and when trying to concentrate on keeping your boat afloat it can seem catastrophic. Over time you realise that the so called crew members were just taking a free ride, using your provisions and were ending up costing you far far more than you ever would get back. Being on the ship can be isolating, depressing, mind boggling and frustrating to name but a few of the many emotions I have experience and am experiencing. Don't forget all good boats carry stuff for emergencies, when you need to don't be afraid to let off that flare and ask for help!

                       

The need to escape.

Escaping.

There are times when things get too much and all you can see is the crap that lies in front of you. It's at times like this that you want and need to escape. I have needed to escape recently. Escape the crazy around me. Hide from the crap and try and have a chance to clear my head and recharge.

My escapism took the form of going away on a break. Myself and my girls and my mum went to the York in the UK for a long weekend. We escaped the crazy that was surrounding us here and packed our stuff and boarded the train. However it's never as simple as that and the journey was tiring for me but when we got there I was able to relax more and enjoy some quality family time.

When you are not right in the middle of a situation you can often work through it and try and process things more. I found that the break helped me to do just that. However having some time away is never always straight forward as I found myself spending a whole afternoon at the local hospital with my youngest who gave us a scare. She was sick and had a headache and was complaining of her neck aching and then started developing a rash that wouldn't fade under pressure. 2 doctors and a nurse later and she was admitted onto a ward for observation. She finally saw 2 more kids doctors who finally said it was an upper respiratory tract infection and the spots were burst blood vessels from being sick. What a long day but I cannot thank the hospital enough as they were so good and they were doing the right thing by observing her and they we're all lovely staff.

So the break had a few of it's own stresses but all in all despite Evie being poorly we had a great time. We extended our stay there by an extra 2 nights to make up for some of the time we lost and to make sure Evie was well enough for the journey back.

So a break away helped me to escape and emotionally get my head in order but boy have I paid for it physically. I have spent the last 2 days in bed in pain from over doing it but it was worth it to have some quality time with my girls. York is such a historic and beautiful city and I was glad I got to visit it again!

         
                               

The steps that have hurt my knees so badly- never again!

My 2 monkeys hiding from me!

Big kid mummy had to have 1 ride too!

View of the Minster from the York wheel.

                         
                           


Whilst I managed to escape and get a break it gives you time to reflect but going away can also highlight things that you are no longer able to do and this can be sad. For instance I had to keep stopping and resting all the time yet I still managed to overdo it. Luckily the girls understand that my legs get bad and I am in pain so they are very good and accommodating. It can still be upsetting though when you just want to be able to run after your girls but all you can manage is a slow painful hobble.

However, I know they appreciate what I do for them and how much I try for them as my eldest who is 7 often says so. She will say that she knows that I try very hard and that I am in pain and that she loves me so much as I do a good job. She has also said that I do a lot more with them than other parents who have no excuse. I have found it's about doing what you can do and being honest when you can or cannot do something. I explain to them how I am feeling pain wise and it helps them to understand what sorts of things we will or won't be doing together that day.

Some wonderful friends of mine have developed a fabulous book that helps children to understand just this concept based on using a colour system to explain how you feel. It's aimed at children in the age range of 2-7 years so my 2 fit the audience perfectly. The reason I like it as it doesn't focus on what you can't do more on what you can do and when. It helps to explain invisible illness to young children.

                    

For more information please visit:

https://www.facebook.com/TotsTaleAboutTheCleverColourSystem/info

Due for release March 2013 on Amazon but we have been lucky enough to get to use this before.

Plug over with now but I really do think it is worth sharing this with people as there was nothing out there to use with young children! Please feel free to like and support the facebook page as it will keep you up to date with things.

The impact of STRESS.

So it's been a while since I posted but it seems in that time like I have had 1001 things going on. It feels as if I have been buried under this thing called stress and it has swallowed me up. Due to being under stress it has had a massive impact on how I have been feeling both physically and emotionally and so this is the inspiration for tonight's blog. The impact of stress.

                         

The above chart shows how stress can affect people and if you read it is shows just how it can affect your health. Some symptoms on there I already suffer due to my medical conditions so you can imagine what the added stress on top has been doing.

Stress and I.

We seem to have a funny relationship sometimes I seem to not stress at all about some things and be very relaxed but other things can become big issues and then cause me to have a full on Fibro flare. It seems as these past few weeks have had quite a big impact and caused one long fibro flare. I think for me the worst impacts of stress are felt through my pain levels and also on my sleeping. As a fibro suffer I struggle with sleep and having good restorative sleep as it is and adding stress to the mix is like having a lethal cocktail, it's a disaster waiting to happen. However, trying to relax and clear you mind of all the things that you are unable to control around you are not very easy.

                         

I also get very forgetful when stressed it's as if it becomes best friends with my fibro fog. I managed to miss my first Fibro support group meeting at the hospital. It wasn't until 3 am the next morning that I suddenly remembered I had missed it. I phoned up and apologised and decided to re book onto another course later on in a couple of months as I had already missed the first of 4 and I was going to miss another so it seemed like it would be a waste of time if I could only go to half. I do look forward to going to this course though so it was a shame.

Stress busting Fibro Mummy style.
I cannot control what is going on around me but I can try and take control of how it is affecting me. I try to find ways in which to try and take my mind off it and think positively about things even if they are not connected to the particular situation. The key is not to let it catch you and pull you down into a depressive spiral.

Things I have been doing to try and take my mind off the stress:

Looking forward - what have I got coming up to look forward to?
For me this is a couple of weekends away with my girls planned. I booked these just recently as I find getting away a good stress buster. I did shop around for some good hotel deals though!
A family holiday, this will soon come round and we love going to our favourite place Weymouth.
Fibro meet- a fab weekend planned where I will get to spend time with some of my fab supportive online friends! eeek can't wait!

Keep busy - What can I do now to take my mind off things?
Part of this for me is helping to organise things for our meet in terms of a document and keeping it up to date.
Doing things with my girls and getting out and about even though I have been in a lot of pain, getting out can certainly help.
Blogging is also a good outlet for me, gets things off my mind stops them buzzing round in my head especially late at night when I can't sleep.

Support - Better out than in!
Talk to people it's better out than festering away inside you. Even if it's a situation that you have little control over or say in it's always better than keeping it to yourself. Those of you who know what's going on just want to say thanks for your support!
Don't hide away and become isolated! Even if you can't get out don't hide away. I find my fab online groups a great outlet and a great support. Some are groups with people related to Fibro and disabilities who I have met some fab people through you know who you are, and others are other types of groups in particular a fab mummy group! I have over the years met some great people online that I have been talking to now in some cases for 8 years!

Try to remain positive - positivity breeds positivity!
As the old song goes 'Always look on the bright side of life'.
I also try and look at the things I have to be thankful for. My recent things to be thankful for are my fab supportive online friends, and a couple of 'real life' friends, who I don't see as much as of I would like but never the less are always there. I am thankful that even though I have been feeling in a lot of pain lately and especially over the last week I was still able to get out with the girls and enjoy a  meal out and then get some lovely clothes for them when shopping. I am also thankful that it is nearly Easter and that Mr Cadbury invented the creme egg- I love them!

                                   


My biggest things to always be thankful for though are my two beautiful girls, who always bring a smile to my face!

                                  


                                  

Sleep sleep where for art thou sleep?

Has anyone seen the sandman?

One of the symptoms of Fibro is insomnia and non restorative sleep. People with Fibro have poor quality and quantity of sleep. It seems this week that the sandman seems to have forgotten me completely! In a four day period I only managed 4 hours sleep. I can tell you that this is physically and emotionally draining.

Now people will ask you why you can't sleep and for me it's a number of reasons. Some is it's just the fibro, some is pain preventing sleep or waking me up, restless legs, IBS, stress, and also needing some of my pills increased as I have got used to them. Now lots of people have got opinions about what you should and shouldn't do to try and get to sleep but currently I am finding it hard to stay asleep for long then a few hours.

                                   

It's at times like this that I regret all the sleep I refused as a child and that I didn't get as I was too busy out partying in my late teens. How on earth I used to be able to go and do a full days work after hardly any sleep and a night of partying is beyond me! I just wish that I could go to sleep at a set time and wake up at a set time and have refreshing sleep! Is that too much to ask? Seems to be with Fibro!

                                        

It's interesting that when you read up on sleep deprivation studies many people report symptoms that are linked to Fibro. Sleep deprivation is used as a from of torture some places and I know why as it has a massive effect on how you are. When I am struggling with lack of sleep my fibro fog is 1000 times worse and my pain levels rocket. I get to the point of exhaustion.

       
                           

Snow snow and more snow.

Yet again we've had more snow here. I have seriously had enough of it now. It is lovely for a couple of days but the disruption is causes is a joke. I have been waiting for a parcel to be delivered that should have arrived last Friday and I still haven't had it because they wont drive up my road. The pavements are like ice rinks and are very dangerous. To prove this my girls school is only a few roads away from where we live yet yesterday I managed to fall over 3 times on the way to collect them. Here in Britain we just can't cope.

Ice means that many people who are elderly or disabled become housebound and isolated from everything. If you can please remember to check on your neighbours to make sure they are ok in this weather and have got everything they need.


                             

Looking forward.

During times like this I find it's good to find something positive to look forward to. For me I am currently now counting down until the Easter holidays and going on holiday again. It sounds like a long time away but it's just under 12 weeks until we go! I am always aware of the 12 week mark as that is when it is best to book the train tickets to get the cheapest advanced fares. We all love going away. Hopefully this horrible cold weather will have shifted by then and we might see this thing that is rumoured to be in the sky called the sun.

                         

Agent Poppy Puppy reporting for duty.

Vital Statistics.

NAME: Poppy Puppy.
AGE: Probably around 6 months old.
GENDER: Female.
COUNTRY OF ORIGIN: Sweden - Travelled to the UK via Ikea.
EYE COLOUR: Black.
FUR COLOUR: Light brown body, dark brown back with white boots, face and tail tip.
LIKES: Children and being cuddled.
DISLIKES: Being alone.
LIVES: Nursery but holidays every weekend.
MISSION: To visit all of Frog groups houses at weekends and have as much fun as possible. Also to ensure all Frog group parents complete the photo diary and return to nursery on Mondays with Poppy.                 

Poppy Puppy Visits Evie.

Evie introduced me to her big sister Lillie and we all
went outside in the snow and built a  little snowman.

                          

We all enjoyed doing some dressing up!
Evie found me one of her dolls purples dresses to wear.

                                 
                                

                           

Evie's Mummy and Nanny took us all to the cinema to see Ice Age 4.
We sat at the back!

My friend Dogger the Dog came too and we shared a seat!

                            

Everyone went to Ikea for hot dog and chips. It smelt yummy!

                         

Evie took me for a ride on the horse merry go round
as we were good when Evie's Mummy was in the shops.

Evie took me to her Grandad's house.
I made friends with his budgie called Minty.

As there has been lots of snow Evie, Lillie and I
built a snowman in their Grandad's back garden too!

This is a big photo of the snowman we made!

BYE BYE EVIE THANKS FOR HAVING ME!