Shouldn’t be surprised…..

So this time while I sit in hospital, pondering what my bloods will be for another month, I thought I’d write about something that might actually help someone.

It all stems from us visiting Australia over Christmas and if you’ve ever suffered from dry skin, you might want to keep reading.

Personally, I’ve had eczema since I was a baby. It has never been horrendous, but it’s been pretty bad with fingers cracking and generally a dry skin issue. My skin is constantly dry unless I use moisturiser – which I’m too busy (for busy, read ‘lazy’!) and my head has been itchy for the last couple of years. It basically makes me feel pretty scummy and not particularly attractive at the best of times.

I had my first shock when I had my stem cell transplant. My eczema pretty much cleared up! And that was nearly 6 years ago! I don’t ever have a big reaction now, and don’t tend to suffer from allergies in anywhere near the same way. Now don’t get me wrong…I won’t be recommending a transplant as a cure for eczema, but it did totally surprise me. I can even wear earrings again which was a big ‘no, no’ before as I would always react.

Despite that, I continued to have the dry, slightly flaky skin (ummm, nice!), the itchy head and the generally not nice feeling about myself. Until we went to Australia. While were out there we were staying in AirBNB properties, most of which had septic tanks. Any of you who know about these (!), might be aware that you have to be very careful what you put into them. So all of the properties we stayed at provided all the usual toiletries, cleaning materials etc that you would expect in an AirBNB house…with the slight difference that they were always organic, and always without Parabens and without soap (along with a few other things that I can’t remember!). Any my head stopped itching so much, and my skin became less dry!

So when I got home, I thought I’d try it out to see whether it was the products or whether it was the water/ environment out there. I’ve been using a Forever living shampoo and conditioner for the last couple of days (Thanks Katie! And if anyone wants some let me know) that whilst I don’t think is organic, doesn’t have parabens or sulphates in it. And already my head has stopped itching so much! I’ve also grabbed a shower gel from a health shop and found that whilst my skin isn’t beautifully silky and smooth, it definitely doesn’t have a permanent dryness now!

So, I’m still in a slight transition phase and am still trying to make sure it isn’t just a fluke, but actually, it can’t do any harm to knock out all these chemicals, especially since I’ve been saying for years, that they must be contributing to all the conditions that are now out there. It’s not a totally easy decision as the products costs substantially more than what I used to buy for us. However, if it does the job, then it is probably worth the extra pennies. I’m going to try my son next as he has dry skin – it’ll be interesting to see how it helps his skin, if at all.

Anyway, I’d be interested to hear if anyone else, post transplant, or just in life in general, has experienced anything similar, and also whether if so, they have any products they would particularly recommend?

 

 

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The Perfect Pair – in aid of Myeloma UK

Ok, so I’m boring everyone again…but it’s only till April and I really, really need some support with this event (The Perfect Pair) as it’s proving much harder than my Glitz and Glamour Ball and my 40B440 challenges! I know that is because so many of my friends and family have helped me so much over the last 7 years, but I’m hoping this can be a final push…it is definitely the last big event that I will be holding…. I promise!

So what is ‘The Perfect Pair’? Well you can find the full details looking at my website above (very proud that I managed this all by myself!), but basically it is a food and wine pairing and a chance for people to get together with a table of friends and have a nice evening, whilst raising money for Myeloma UK. The charity will get a small amount from each table sold (£100) and then I hope that we can raise some money via the Silent Auction we will be holding….so you won’t even be pestered much on the night with that…always a bonus!

But to do the auction well, I need some really good prizes and this is where I’m calling out to people. Whilst the event is in the Midlands, the auction prizes can be ‘experiences’ anywhere, or of course ‘items’ too. So it doesn’t matter where you are reading this….you may be able to help! Whether it is a bottle of wine, a meal out, theatre tickets or even the use of a holiday home, everything is really helpful. And I am very happy to put reserves and T’s&C’s on anything that is donated too! And if you can’t help yourselves but know people who might be able to, please let me know…as you might have gathered, I’m not shy about asking and am prepared to pretty much sell my soul this time round!

I think I mentioned on a previous post that I wrote about what I’m looking for help with apart from prizes. I’d love to have a PHOTOGRAPHER on the night to take photos….and I’m happy to share the proceeds of that with them (get me!) if they would prefer that.

I’d also really like some LIVE MUSIC as people come in…either someone singing and playing say the guitar, or a 4 piece or something like that. And if they would like to stay and play later on that would be great too! So if you’d be interested or know someone who is, please let me know.

And finally, I’d like to find someone to help PRINT THE PROGRAMME for the night. It won’t be as big as the last one (I’ve learnt my lesson that those are pretty costly for the print company!), and I’ll try to keep it simple but great!

I also need to do the centrepieces but have an idea for that….if anyone has access to a florist who might donate a small number of flowers (I won’t need many), please let me know!

Anyway, I think that is the end of my begging email! I’ll obviously promote everyone who is able to support me so share away if you think you can help. And thank you…..again.

www.justgiving.com – raising money for Myeloma UK

 

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It’s a bit like marmite

I’ve been meaning to write this post for a long time so I’m sitting down today to actually do it. I think what has spurred me on is a film that I recently watched, ironically, on Facebook, that partially covered the impact of social media on all of us, but especially on the youth of today (god that makes me sound like my parents!).

Facebook especially, is something that has quietly overtaken my life since I first started on it, probably nearly a decade ago. It started small and with my friends, and grew into something much, much bigger. I got back in touch with old school friends. I found a new way to communicate and share experiences with other myeloma patients, who then became friends. I used it as a massive tool in my fundraising goals and could never have raised all I did for Myeloma UK without it. I love it.

However, for all that good, it has also proven to have a fairly negative impact in my life and I am rethinking it on so many levels. I find myself really struggling to keep up with everything that now comes up on social media and actually feeling quite anxious and depressed about what I might have missed about friends, who I might upset and whether I could be contacting someone else for my fundraising. It’s mad. I hate it.

So recently, I took the first steps, (having watched the film I’ve attached below), to make some changes. Rightly or wrongly, I have started removing people from my Facebook page. Not because I don’t like them or they have done anything wrong, but just because I need it to go back to being about my family and friends, and those who support me. I’ve stopped accepting people just because they know my name….and if that’s you I apologise, but I need to find a way to look after my close friends better, and I can’t do it when I’m consumed by everyone that I’ve met. It sounds selfish and I suppose it is a little bit.

I know quite a few people who have come off Facebook altogether. Nick won’t even give it the time of day. I’m not quite ready for that though and I suppose if I’m totally honest, I’m using it. It helps me to share this blog and help people who find it of interest. It helps me to raise invaluable money. And I’m pretty nosey if I’m honest! I want to know what friends are family are up to and it helps me to do that a little better. But I’m trying to rethink how I use it a little bit. I’m trying not to share irrelevant posts too often…especially those pictures etc that just block up timelines these days. I want to share important things with people who care. (Hmmm, that said, I’m just remembering my last post on driving on tramlines…not that important….work in progress I suppose!)

We’re also rethinking ‘devices’ in the house! We’ve just ordered a charging station and we are going to set up a place where all gadgets get left in the evening. None of us will have our phones and tablets by our beds anymore. I hope it will help us all to relax more and focus on each other. (It does mean people will have to realise we aren’t permanently attached to them though and if they urgently want us, they may have to phone our….yes we do still have one…..landline!)

I’m going to keep assessing the Facebook thing. I think I need to take it off my phone again too so that when I’m out and about I’m focused on what I’m doing without this need to be permanently up to date with Facebook trivia and the news. Everything can wait. Nothing is that urgent. If I want to teach my kids that life is about living and socialising with people and not screens, I need to lead by example!

I would definitely recommend you taking the time to watch the film – go to youtube and search for Simon Sinek, millennial (it won’t let me post it on here!)…for me it was 15 minutes very well spent, that has changed a lot in how we are living with social media now. It’s not 100% accurate and I don’t hold that all ‘millennials’ are lazy, unsociable people who don’t know how to relate but there are some good points in there!

So, I love social media…and am even thinking of working more with it, but I also hate it! That said, I just love marmite!

 

 

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