Sunday, 20 December 2015
Why have I started making videos? Well after the filming on Friday I was really proud that I hadn't let my nerves get the better of me and that I had taken back the power to be how I want to be rather than letting fear control me - that took a lot of work by the way! But I was also really disappointed as although I had spoken about my challenge and how I had got to that point, I didn't really manage to get across the journey that I was on or insights that had come up along the way...you can't schedule inspiration, especially with a head that works on its own terms! Lol. So I thought why don't I just start making short videos whenever I feel inclined to do so - which is what I am doing!
I spoke a bit yesterday about being a perfectionist and trying to unlearn that. At the start of my 100 job challenge I had a list of 100 jobs that I wanted to try, the plan was set I just had to follow it - just how I liked it! But pretty rapidly things would happen, such as my condition getting worse, suddenly not hearing from the job or whatever - something would happen that meant I had no choice but to deviate from the plan. Can you imagine how annoying that was, I had even worked out the order of the jobs so that one would help with the other and now all of a sudden the order was getting changed and there was nothing I could do about it! Now i realise how ignorant that was - life is unpredictable and that is what makes it beautiful! How could I possibly anticipate the best journey for me to take in a world of infinite possibilities?! I now go entirely with the flow! My list is null and void! If I see a job i fancy trying, I send an e-mail - if I don't hear back it wasn't meant to be. If someone asks me to try a job and I really don't want to do it, I say yes anyway! If suddenly get to ill to go to a job - I thank them for their generosity and apologise profusely - If they are happy to reschedule excellent if they don't respond then that is all part of the journey. At my interview on Friday he asked what jobs I would really like to try - It made me realise I am so into just going with the flow in relation to my challenge that I hadn't given it any consideration - I actually couldn't answer! I just know that wherever this is meant to lead it will happen with no input from me! Life knows far better than I do and I trust that now! I am working on applying that to every area of my life...I didn't say it was easy but it is certainly worth it! So far I have found that if something becomes a struggle then I am probably trying too hard with something that isn't meant for me! I have put a lot of time, passion and energy into my challenge, but no real effort. When you want to do something and you know it's right then I don't think any effort is required - effort to me means it's something you don't want to do or isn't right for you if you have to try that hard at it! That being said its a lot of work overcoming fears that I come up against in my head, but again I don't see it as an effort because it's something I wholeheartedly want to do.
I love writing and really enjoy it as a way of communication (something I never knew until I started my challenge). I'm not sure videos are my forte, but they are a great way to instantly record what I'm thinking! Sometimes it all comes to me too quickly to write it all down before I forget, so a video could be the solution to that! Plus I can't be as perfect with a video as I can with writing as it's instant - I can keep remaking it but it will be different every time! It's not like writing where I can spend hours rereading and reworking it until I'm happy with it - I have to just do it and then send it out into the big wide world! I've been watching live videos by an inspirational speaker called Scott Stabile (you should check him out), I love them because they make you feel way more connected to the person which is awesome! Writing connects differently as I think it gives you the time and space to explore what is being said in your own time and in your own way. Anyway I think that's all for now! Follow me on my Facebook page 100 Job Challenge if you would like to check out my videos! Thank you for your support. Much love Bobbie xxx
Monday, 16 November 2015
Job #26 (woo hoo I'm over a quarter of the way through!) was working at a craft centre. It's really the lady that runs it and the people who go to it that make this place the crafting wonderland that it is!
I'll start off by explaining a bit about the company. It is a community interest company, so is almost a charity but not quite! The company is called Unravel & Unwind and is held in a wonderful space called Intra which just oozes art appeal everywhere you look! There is another artist who is also based in this space and it is just magical. Unravel & Unwind hold 'drop ins' 6 days a week - which they are hoping to extend to 7. There are numerous craft sessions that people can come along to. You don't have to have any previous knowledge and can even just come along for a chat without joining in if that's what you need! Sometimes they are directed by an expert, and sometimes they are like the session that I attended today where is it a learn as you go format so everyone is teaching each other which is great! The company formed very organically and Faye very much wants it to continue that way. There were a couple of volunteers there today who were coming up with new classes that they would like to run. Faye wants it to be a real community project, so goes with the flow when it comes to new classes. The felting class that I attended today is once a month and started in January as it was something a couple of people fancied giving a go - they watched a YouTube video and away they went! It's an absolute bargain too, for just £7 people can come along for the day, and all materials are provided. I should add that all the materials that Faye sources are made by local suppliers to continue with the community theme. People also have the chance to display their work, quite a few have had their pieces sell too!
Felting was so much fun and something I hadn't even heard of! It's very therapeutic, and we had great fun experimenting and seeing what we ended up with! I can't wait to go back and try some more classes and learn some new skills!
The most amazing part of Unravel & Unwind however has to be Faye who runs it! She suffers with a condition called Fibromyalgia among many other things. This is a very difficult thing to live with, and left her unable to work. This is how Unravel & Unwind was created, a business doing what she loves on her own terms! Unfortunately companies aren't too quick to hire people with invisible conditions like ours and in a way I can't blame them as our bodies can be pretty unreliable at times. For those of you that don't know much about Fibro, the body is in extreme amounts of pain and gets tired very easily along with head fog and a multitude of other symptoms. You would think this would make it pretty impossible to run a business, but with an extreme amount of determination Faye is a shining light to all of us to show that anything is possible if you set your mind to it. Pretty much everyone that attends the sessions at Unravel & Unwind has an invisible condition of some kind or another - although it's not a requirement! It creates a wonderful place for people to come and socialise without worrying about the affects of their condition. Every person in the room today suffers with memory loss, so it was completely acceptable that we didn't know each other names, how we take our tea or what we were even doing there! It's a great deal of pressure that we put on ourselves in the outside world to seem 'normal' but faye has created a safe environment where we can be our own kind of normal with no need to worry about being seen as rude or feeling judged. There were even two people there with MVBD too! It always makes me so sad to hear people's stories about invisible illness, but it also gives me the determination to carry on the struggle to find a way to overcome these things. Each and every person there today was a true inspiration, I can appreciate the struggle that it would have been for them to come along today. What a fantastic project, it really is a magic that needs to be experienced to be appreciated as it is impossible to put into words. Invisible illness can be so isolating and what Faye has done is create somewhere that people can go and for a few hours can feel completely understood.
This has definitely gone into my top 3 on the job list so far! What an incredible job helping the community whilst helping your health, being creative and helping others at the same time...I really don't know what more you could ask for from a job than that!
I asked Faye a few questions to unravel (see what I did there!) what it's like to run a craft centre, here's what she had to say:
1. How long have you worked in your job and how did you get into it?
I've been working on Unravel & Unwind CIC since December 2013, with the studio space opening in March 2014. The job found me, I had been having visions of it while I was unemployed and recovering from the last serious cfs/me/fibro flare that caused me to become unemployed. I had started to teach myself to crochet as part of my personal healing and was having no joy in finding employment. So with the help of the job centre I built my own job.
2. What's the best thing about your job?
I love being able to be creative in the company of like minded people. Sharing skills, knowledge and ideas is just touching the surface of what I love. Everyone I interact with have their own story to tell, but the common factor is that many suffer from hidden illnesses such as depression or fibromyalgia, and all any of us want is to spend time with people who understand while crafting. For some reason, while we are being creative we don't "feel" our illnesses and we feel "normal" for a while.
3. What's the worst thing about your job?
The paperwork - I deal with all the bookings, accounts, social media and the end of year tax returns. This takes up a fair chunk of the working week, but hey if it's gets too much I just turn my back on the computer and get back to crafting 😊
4. If money, time, education etc were no object what would your dream job be?
I'm going to be truly honest and tell you that I am in my dream job. I just need more hours in the day and more energy to do all the different types of arts & crafts that I want to try.
5. What stress rating would you give your job (where one is super relaxed and 5 is super stressful)
Most of the time it's 1. I only reach a 5 when I'm working out the accounts.
If you would like to sponsor me on my challenge by donating to the wonderful charity that is The Meditation Trust & their project researching the impact of Transcendental Meditation with helping people (particularly soldiers) to overcome Post Traumatic Stress Disorder then please visit: http://www.100jobchallenge.co.uk/donate
Friday, 13 November 2015
People have said in the past that they would love to trade lives with me. The caveat to that would be that they would have to swap absolutely every aspect, it can't be all rainbows and unicorns after all. I wonder if they knew the full story whether they would be so eager...
Truth is the parts that they have seen that they quite like the look of are all a result of hard work and the support of my incredible friends and family. The bits they haven't considered when making such a statement are probably less desirable, and things that unfortunately I have no control over. But none the less I have to find a way to live with them each and every day.
Let's have a peek through the looking glass and delve deeper into this grass that appears to be greener! This is how your life would be if you made the swap, should you wish to accept it...
You work part time. We only have to work as much as we need to to sustain the lifestyle that we choose. If you want material possessions - the biggest house, the newest car or latest smartphone then of course you're going to have to work your arse off. Maybe your at work so much you don't even get to enjoy the things that you work so hard to get, but at least you can say that you have them. In your new life however, you have opted for experiences over possessions. You value life more than you value status within society. That being said, some people are just dealt shitty cards and have to work their arse off just to scrape by. They are going through their own struggle. You are lucky enough that you have a loving family to support you whilst you recover.
You work part time because that is all you are well enough to do at the present moment. You have some pretty fierce criticism to deal with mainly from yourself but sometimes from others. You have to keep reminding yourself it's not because your lazy that you can't hold down a full time job. When you do go to work, you work at a florist. You love your job. Sometimes you'll feel amazing, but most of the time you will be battling trying to stay awake. It can take a great deal of effort to walk in a straight line, your head may be attached to your body but a lot of the time it feels like it is orbiting somewhere in space! A customer comes in to place and order, the majority of the time it's a real struggle to remember all the details you need whilst trying desperately not to give away your dirty little secret...your head doesn't work - that wouldn't look very professional now would it. You find it so difficult just to get your head to tell your hands how to write the correct phone number. When you have to add the cost of the flowers to the delivery cost, you might as well have been asked to perform some sort of complex algebra as it's just as difficult for you. You look forward to going to work and the variety of tasks and challenges it provides. As well as being surrounded by awesome people. You are one of the lucky ones who loves their job.
You have all these great plans. you do have so many amazing opportunities (you made those happen though), but a lot of the time it will take several cancelled attempts before you manage to get a day where you are well enough to go and do all of these cool things. You will have to deal with the frustration, wishing you didn't have to cancel so many plans and the internal battle that ensues. You look at a funfair in awe, it used to be one of your favourite things to do...now if you get brave enough you might go on it, but you will be ill for at least a week. If you don't do it however, you feel sad about the things that you can no longer do. It takes a lot of determination not to feel sorry for yourself sometimes. You do the best that you can, and now accept that all anyone can ever do, is try their best.
Your at university. The course started off as 2 evenings per week, but you couldn't handle just 6 small hours of learning, it was just too much for your head. You had to deal with the feeling of being a failure, making the decision to change to just one evening, 3 measly hours per week. You also had to make yourself vulnerable and try to explain your stupid condition that you wish you didn't have and that no one has even heard of to the university so that they could help. The lecturers were great, but have had to change aspects of their lesson just to give your stupid head a chance to learn. Those 3 small hours of learning made you feel terrible for a week on more than one occasion - learning used to be one of your favourite pass times, yet it's now so difficult. You may have an incredible evening of inspirational thoughts and ideas, but whether you will remember it a week from now, tomorrow or even in an hours time is left to the gods. Your getting through it though, and loving every second.
You went travelling for a few weeks. but only because you weren't entirely convinced that you weren't going crazy! You came up with the theory that as your condition is caused by stress if you completely got away from all your worries for a few weeks you would be able to see if you were making your illness up or not. You put this experiment on a credit card that you are still struggling to pay off. Was it worth it? Of course, you discovered your not crazy and your not making it up either. People saw the photos and thought it looked great. What You didn't get photos of however was you crying in the street, on the phone to your mum at 5am because you feel so unwell in a country where you know no one - you weren't well enough to move on with your friends. You didn't get photos of when you had to have your friend hold your hand when walking up the street because your head was so bad you may aswell have been drinking all night! You didn't get photos when you were tucked up in bed on your own in a strange hotel battling to stay awake due to the copious amounts of medication you were taking whilst your friends were out having fun. It was a great experience though, and a very relaxing time out.
You go on meditation retreats. You have an incurable condition. You can't put a price on feeling human again, even if it is only for a few days. You will literally try anything that makes you feel even slightly better. This is probably your favourite place on the planet, you can have conversations freely without your head holding you back...you are you again when your here.
You sometimes seem rude, boring or maybe both to people when you are unable to think of anything to say when having a conversation. You may even walk off mid conversation because you can't bare the fact you have no idea what to say. You have to deal with the fact that you are a shadow of the person that you used to be, and people will not often but occasionally take the time to remind you of that in case you hadn't realised - like there's something you can do about it. Most people however say they don't even notice you have difficulty finding the words, I think because you can feel the struggle you think others can see it - but they rarely can.
Your head will no longer be able to comprehend the time, you will have to have your mum help you to manage when you have appointments as it's no longer something that you can do. You will lose hours of your life in the blink of an eye. Your very blessed to have someone that can help you though, and luckily you usually get it wrong so that your early rather than late which is a bonus!
You used to like things done a certain way, and were a highly strung person. Now every day you become that person less and less because you simply can't be. You have had to learn to accept that you make mistakes - about 50 a day! You do however get great pleasure in chipping away each of the last remaining parts of you, the old you. Which then enables you to come closer and closer to being the person you were destined to be. Like a caterpillar shedding it's skin.
I do have a pretty awesome life - one that I love and am very proud of. Of course if I was given the opportunity of a magic wand or a genies lantern I would get rid of my condition. I am working on that part, and all that I can do is be happy with the cards that I have been dealt and find joy in the lessons that it gives me each and every day. There is a strange satisfaction in completely falling apart and having to piece yourself back together again.
So next time you say to someone that you want to trade lives with them, make sure you have truly considered all that entails. There are plenty of people who my life is significantly better than, but I suspect those are the people who wouldn't make such a sweeping statement as they are painfully aware of how little we can know about what is going on for someone.
Everyone has a struggle of one kind or another. Be the one who helps make it easier for them rather than more difficult. Even a smile can turn a hopeless day to a happy one.
Thank you so much for taking the time to read my blog, I would be so grateful if you would share this.
I am doing my 100 Job Challenge to raise money for The Meditation Trust. If you would like to sponsor me and donate money to this life changing charity then please click the link: http://bit.ly/1J6pUam
Thank you :-)
Thursday, 3 September 2015
Job number 20 was working as a scaffolder which was a brilliant one to mark me being a fifth of the way through my challenge already (I'm actually pretty sad about that!).
As I have mentioned before I live in a pub, so you will not be surprised to hear that I know a scaffolder or two! After returning from my day of happiness spreading in my crazy outfit, I got talking with one of the regulars and decided I would work with them for the day! I have to say this was the only job that I have been scared about doing and it wasn't because of the heights!
They really kindly had a T-shirt made for me (in apprentice colours of course), and promised to take me to a scaffolders cafe - that the was the bit I was scared about...being the only girl in a cafe full of men! I needn't have worried, breakfast was actually a surprisingly civilised affair! After being picked up at 5.45 - which was a lot later than I had anticipated we grabbed the lorry and headed off to Dover and in search of somewhere for brekkie. It was a really nice way to start the morning and to wake up properly ready for some seriously heavy lifting!
We arrived at the job and had the task of erecting 3 scaffold towers. Luckily they didn't need to be as high as originally anticipated - apparently I wouldn't have survived the day if that had been the case! Phew a lucky escape on my part it seems...I was regularly reminded that it was actually an easy day - although I have to say it certainly didn't feel that way! The lifting although easy for them certainly wasn't for me - especially as according to my consultant I shouldn't exert myself...what does he know! It did make me feel rather dizzy and light headed, which isn't ideal but I carried on anyway!
There were many things about my day working as a scaffolder that I was in awe of, one was how well they could drive the huge lorry! First off had to be manoeuvred into a spot on a road with cars parked down one side! Then later on they parallel parked in a space I wouldn't have got my little hatchback into! (Maybe that's only exciting for me as I'm terrible at parking!)
We were all parked up at the job and ready to go when we spotted something that could have potentially made our day pretty tricky...baby seagulls! I have to say I thought they were winding me up at first (I was also expecting to be sent to the shop to ask for a long wait at some point!), but thinking about it if we had of been going on the roof, I don't think the mother would have taken too kindly to us being there! Thank goodness we weren't going up that high, crisis averted!
I was the labourer for the day which meant that I carried the bits from the lorry and stacked them up for them to then put the scaffolding up...I have to say I did really want a go with their action man drills and tool belts but alas it's a super important job which can't be undertaken by a mere apprentice! As you can imagine the health and safety is extensive! If something goes wrong then they are likely to be held 100% accountable...hence the huge price tag! Their biggest job they have ever done was £49,000 - but it does cost them £15,000 to buy enough poles to fill a lorry so it's certainly not a cheap business to start!
I have to say I was pretty impressed with myself for being able to lift the big poles, although after the first few I was getting laughed at for the ridiculous methods I was using to carry them trying desperately not to use my shoulders! I was told that everyone has a fatty bit on their shoulders...however I think mine are the exception and are all bone! There were points where I was laying my neck to the side and resting them on there but I have to say I don't think that was overly successful either! As I am finding with every job that I go to, there is a technique to it - you have to make sure your standing in the centre when carrying them, as otherwise gravity tries to pull down on one end or the other making it harder! If you get it right you can actually carry it with no hands...I didn't advance to that stage! I really did have to use all my effort to lift the big poles, and even then I was shaking trying to carry them. All of a sudden I picked one up with great ease, I honestly thought it was a eureka moment where I had finally mastered it...only to be asked by Ben why I was cheating carrying the alloy poles! No one told me there were light and heavy ones - I would have cheated the whole time! Unfortunately they are about 3 times the price and not as strong so that was actually the only one that I found!
I took great delight in watching people's faces when they notice my Fawkham Valley Scaffolding T-shirt and see little old me carrying these big long poles! Each length pole, bracket, piece of wood etc had it's own weird name and place on the lorry. I was actually pretty impressed with myself that by the end, even with my terrible memory they were asking me to go and get things and I knew not only what it was but where it was! When we finished Ben (one of the owners) took some photos of me at the top of the scaffolding. I don't know if you have read my blog about working as a theatre technician but when I climbed the ladder there it took me ages and I had to hold on even when I got to the top as it made my head really bad - yet I whizzed up the ladder here and felt fine. It highlighted to me just how much the environment around me affects my condition, I am definitely better at working outdoors than indoors now.
After we finished in Dover we made a pit stop at the newsagents for a drink. I couldn't believe how thirsty it makes you...now I understand why scaffolders are renowned for having a beer after work - see this challenge is helping me understand all sorts of things about people!
Next up was Chislehurst. This was a bit different as we were just putting another lift on an existing scaffold (see I know all the lingo!), another level to you and me! We had a bit of story time on the way there, which I found highly amusing! I asked the obvious question which was - do you ever see things that you shouldn't do...with the answer being of course! They told me a story of a job they did in London where there was a lady who had a shower at the same time every morning, apparently when they arrived on site they would be offered a cup of tea which they would politely refuse as they wanted to get straight to work...I wonder why! I couldn't help but think that it can't always be women that they catch in the shower!
There was another story where one of them had been very polite and asked to use the bathroom facilities - nothing wrong with that...except he didn't specify that he would be doing a number two so the lady phoned and complained to his boss as it made the house smell - when you've gotta go, you've gotta go! Weirdly I was actually thinking that the fact you don't always have access to a toilet could make it tricky for a lady scaffolder...they have never seen a female scaffolder before apparently - maybe that's why, along with the fact it's never men in the shower!
The funniest story for me however was actually the next door neighbour of the house we were on our way to. Apparently on their first visit she had been shouting at them saying that they are ruining her life because she didn't want the extension, they explained that they were only doing their job but apparently when they left she was laying face down on the front lawn kicking and screaming like a small child #awkward. I never knew scaffolding could ruin your life, but there you go - you learn something new every day!
There were builders at the second job who actually offered me the chance to do one of my jobs with them which is pretty cool! I think they found it pretty hilarious watching me pass the massive poles to the guys on the roof. The biggest one that I carried was 21ft, which I was told when I got back weighs 5 stone...no wonder I struggled to carry it, it's not that much lighter than me! (I must confess that I only held the biggest one long enough for a photo to be taken, even then it had to be put on my shoulders for me and removed pretty rapidly!!). I also have it on good authority that one of the guys at the firm can carry 5 of those in one go! I can't confirm this as I didn't see it, but that is pretty impressive stuff! I spoke earlier about being in awe of them and had I seen that, it would have made it onto the list! but when I was passing the bits up to them it absolutely amazed me that they could grab it with one hand whilst up so high and lift it with such ease...amazing!
|Trying to play it cool holding a 21ft 5 stone pole!|
Once we were all finished we headed back to the yard to load up for the next day. I was shown the painting room which is where they paint all the equipment so that people don't take it. some people eh! Although I'm not sure just painting it green will deter them too much! There were also some trainers and other items in their that had also been painted but I don't think that was for identification purposes!
A few other phrases that I learnt on my day out was instead of saying the number of people you need at a job Ben would say handed so 3 people would be 3 handed - which I'm not sure if everyone is only allowed to use one of their hands but there you go! Then there is striking which means to take it down! A day taking down scaffolding is a good one as it frees up equipment and means they don't have to fill the lorry but it does mean that they have to do more jobs as they always have to do enough work to cover the costs for that day (pretty sensible actually!) and the taking down only accounts for 20% of the cost.
I was surprised to learn that when I asked if they were afraid of heights they said most days their fine, but they do have days where they look down and get the shivers!...they seemed pretty fearless to me!
|Post scaffolding muscles!|
Overall I had a brilliant but very difficult day! My poor little shoulders even had marks on them by the end of it and over a week later still hurt! It's funny, it makes you realise how much you use your shoulders when it hurts every time you move them! Obviously I had to make the day authentic by going to the pub with them afterwards!
|Stitch having a shandy!|
I spoke with Ben to find out about the ups and downs of scaffolding...
1. How long have you worked in your job and how did you get into it?
'23 years because I worked for my friends dad to start with, then decided I wanted to start my own business'
2. What's the best thing about your job?
'Definitely has to be the money, we are able to charge a lot - but it does cost a lot to run a scaffolding firm, plus the fact that it can be dangerous at times.'
3. What's the worst thing about your job?
'The weather - coming home when it's dark is horrible, scraping ice off the window at 5 in the morning isn't nice either. We even work when it's snowing! The only time we don't work due to weather is when it's thunder & lighting because that would be just silly!'
4. If money, time, education etc were no object what would your dream job be?
'I would have loved to be a formula one driver.'
5. Why didn't you do that instead of scaffolding?
'Erm because it costs about 40 million pounds to do!'
If you have read this blog and realised that you are in desperate need of some scaffolding, then these are the guys for you! Visit their website on http://fawkhamvalleyscaffolding.co.uk/. They were kind enough to donate £50 to that challenge - thanks so much for that! If you would like to donate too please visit http://www.100jobchallenge.co.uk/#!donate/c1n0m.
Wednesday, 5 August 2015
So I want to start by saying that I am sooo sorry for being quiet for so long! It's been a few months now since I last posted a blog! Fear not I have still continued with the challenge!
So why haven't you heard from me for so long? Well as you may have already realised this condition just seems completely made up with loads of ridiculous side effects on my life! I have recently found out that one of the impacts that it has is that our bodies (it's no longer just my body as I have now met lovely people with it too, more about that later!) are permanently in fight or flight mode which as you can imagine means your on high alert all the time - not ideal! Some have found this has made them super anxious which thankfully I haven't experienced, but for me it just makes me feel overwhelmed very easily! As I have mentioned before my memory issues (although greatly improving I'm pleased to say) do mean that my high class organisation skills that I used to posses have now deserted me! What has this got to do with blogging? Well I had a bit of a silly run of doing way more than I am well enough to do, I was getting so many amazing opportunities coming up as the word spread about my challenge that I didn't want to say no to any! The result was that I sent myself backwards in my recovery and got a backlog of unwritten blogs whilst I was at it! That then felt way too much to handle and as a result at the worst point I had about 10 blogs to write - I think that's pretty scary even for someone with a brain that works! After a few nights of giving myself a stern talking to I forced myself to write them all and catch up. So why have I not posted them? Well even when their written there is still a lot of work that needs to be done, and now I have the conundrum of do I post them all at once and let people work through at their leisure - or do I publish current ones and sprinkle the old ones in intermittently! Who knows! So again as you can imagine I'm overwhelmed! Luckily I am on holiday in a few weeks for some much needed enforced rest and plenty of time to get all of my challenge stuff up to date! Hooray! I thought I would write this as a little taster of what's to come!
So now that I have my rather over complicated grovelling apology out the way onto the next bit! It hasn't been all plain sailing in the last few months whilst I have been quiet. Some weeks I've felt incredible whilst others I have had to cancel jobs that I have planned as I am just too unwell. The past two weeks have been some of those weeks. To say I have been exhausted would be an understatement. It's strange the tiredness you get from MVBD is not like anything I have experienced before, it's like every inch of your body is just begging you to stop and sleep - which as you can imagine is exhausting in itself and rather inconvenient! Some days I will literally wake up have a bath, have my breakfast and that has worn me out so much that I can't do anything but go back to sleep - pretty unimaginable for a 27 year old eh! I read an article by a lady, surprise surprise I can't remember what she had, but it was something which meant that she got tired very easily. She came up with a great way to explain it to people, as obviously it's very hard to comprehend if you haven't experienced it. She said that every morning you have a certain number of spoons for that day, each task represents a spoon I.e making a cup of tea, taking the rubbish out, filling the dishwasher! You get the idea. Some days you get more spoons than others, but when they are gone their gone so you have to choose wisely about what you do and don't do. I can absolutely relate to this, it's strange as you have to look at the day ahead and think how am I feeling and what is most important to get done as sometimes you know you just don't have enough spoons. Then other days when I'm feeling good I try to cram as much as possible in as you don't know if it's going to be a good or bad day tomorrow.
The TV presenter course for example I have had to reschedule a couple of times now, they have been so amazingly understanding which is fantastic. It's a full day in London, doing something that I know I will enjoy but will be nervous for the duration as I hate speaking in groups let alone on camera! So I know I'm going to need a looootta spoons that day! Unfortunately I haven't had enough spoons for all my previous attempts, the lady kindly e-mailed and asked if I was anxious and if that was why I was cancelling - which was really kind and thoughtful. How do I explain that it's because I know it will exhaust me and so I have to do it on a day where I have enough energy to cope! I don't want to be stuck in London tired and with a floaty head that's for sure! Anyway I have rescheduled and put a plan in place that will hopefully ensure I keep up my spoon supplies in the run up!
Today is the best I have felt since the 11th July - the day that I did too much! It's strange, when you have long periods of exhaustion you start to wonder if your just plain lazy. Mum cooks me a wonderful dinner to which I have contributed nothing other than enjoying eating, then obviously it's only right that I put the dishes in the dishwasher - not too much to ask you would think! Sometimes it takes so much energy for me to even get off my chair that the thought of putting away the dishes makes me want to cry! I start to think to myself - what have I come to, am I that lazy that I can't even be bothered to put away a few measly dishes! But then I get a day like today where I realise I'm not lazy I'm just ill! Today I more than happily do the dishes and go out of my way to do lots of other things that I don't have to do, that's when my faith is restored that it's not me it's MVBD!
So anyway enough of that depressing stuff! I really don't like sharing it as I feel like I'm getting out the violins, but I am learning more and more how important it is to try and help people to understand a bit more about the condition. Now for the good bit! I was so so privileged to attend the Independent newspapers happy list party a few weeks ago with Genny from my happiness spreading job, she had been voted #51 on the list! More about that in the blog but I was absolutely blown away to be in a room with such incredible people. One of the many amazing things to come from this challenge! I'm still grinning ear to ear when I think about it!
The most amazing thing however is the little MVBD community that is building! When I started this I thought it was just little old me that was unlucky enough that the crazy number of pills, physio and a strict diet were doing nothing to relieve the condition - but it turns out there are a few of us! The consultant is so super busy that appointments are very rapid and with a head like ours it's tricky to think of what you actually want to ask until you have left! Not helpful! We've managed to piece some of the information from each of us together to enable all of us to have a bit of a better understanding of what we have! Great! I was very gutted to find out that it's incurable - one of my MVBD buddies told me that! I am however determined to find a cure - there is no way I am never getting on a roller coaster again! I had an appointment with the consultant back in March after I had just started this challenge, I was going to the gym every day, feeling great and feeling rather smug about it! Every appointment you have to say what percentage normal you feel I said 90%, very chuffed with myself as I then went on to tell them about KORE therapy and how that now meant that I was medication, physio and diet free! Woo hoo! I've found something that can help this condition that no one knows anything about. I was told to carry on with what I was doing as it was obviously working but there was no interest in finding out about this miracle treatment...what?! So now I would say I've overdone it a bit and reduced my percentage but I am doing so much more than I could have dreamed to be doing a year ago! Anyway there are now 5 of us in our MVBD crew, and they are all improving with KORE therapy. They are all also great friends of mine now, so I feel really lucky that the challenge has allowed us to all meet! It's so nice having others that understand, plus their all such great people! It's so lovely to meet every few weeks and see how much better they are looking. It really makes me so happy every time I see an e-mail in my inbox from my website, as it's just great to be helping people through such a rubbish time. Darren the KORE therapist and I are the only ones to have met everyone in the MVBD crew, so next week we have arranged a dinner so that everyone can meet each other - how exciting is that!
There are 3 of us that would like to start a charity that will be able to subsidise people with MVBD to have KORE therapy as I also realised that we can't work with it so can't afford this life changing therapy! So many fantastic things are coming from this challenge that I could never have anticipated!
Anyway I think I have waffled on enough - you don't hear from me for months and then when you do I won't stop talking! Sorry I'm just so excited to update you all! Keep your eyes peeled for my latest blogs and if you would like to donate to help even more people then please visit http://bit.ly/1J6pUam
Have a lovely week!