Wednesday, 5 August 2015

Breaking the silence...what's it's really like to live with MVBD



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!

Bobbie :-) 

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