Social media and a year of blogging

I never used to be one for spending all day on social media, looking at photos, watching videos or just reading about others lives. I was always too busy for it. I was working, rock climbing, hiking, travelling, having coffee with friends or visiting family. I didn’t have time or a want to connect with strangers. I never saw myself blogging or Instagraming that’s for sure. However now social media has become a life line to me.

I started up my blog nearly a year ago, how time flys eh?! I started it as a form of therapy for myself but also to have a way to help those around me understand a little more about M.E. I never thought through blogging I would make friends and connect with an amazing community of people.

M.E/CFS can leave you feeling so alone when you are bed/house bound. It can be days, weeks or months before you hear from a friend. Their lives continue to go on while yours just stands still. It’s not that people don’t care about you, it’s just that they are busy working and living a life while you are not. Even  though you know these facts it doesn’t stop you hurting, feeling left out and worst of all forgotten about. That’s why I am so glad for social media, never thought I’d hear myself say that. I can now connect with other M.E suffers and those with other chronic illnesses who make me realise that I am not alone and don’t have to suffer through this myself. They are there for the late night chats, the early morning encouragements and the afternoon pity partys you throw yourself. They send you silly pictures, write loving letters and best of all want to hear all about how much pain you are in and how much this illness sucks as they know exactly where you are coming from.

Lots of people make fun of me for my love of Instagram which is basically what most 16 year old girls spend their whole days on. When it first started up I didn’t see the point in it at all. I mean why does anyone want to see a picture of my porridge, shoes or new throw pillow. Now I see why it’s so popular. It truly connects you with people from around the world who you normally wouldn’t ever have the opportunity to get to know. Through social media I have come to be part of an amazing community. I have made friendships with people in Australia, Canada, Barcalona and right here in the Uk. I’ve even got to know a lady right here in Lancaster which is very cool.

Within the spoonie community we might not have the same music tastes, like the same hobbies or even speak the same language but we do all have one thing in common and that is how much we care for each other. We are a community that want to make it known to all these who suffer with chronic illness that they are not alone and we are here to love, support and care for each other the best we can. Without social media it would be so much harder for us all to connect and it would be a lot harder for our voices to be heard.

There are so many campaigns and online protests that are run by those with chronic illnesses as we are not well enough to march around with banners and placards. Through these online protests we get to have our voices heard and more understanding brought to our illnesses. #millionsmissing is still running and had 100k mentions on social media. How utterly amazing is that. Round one was so well received and campaigned that there will be a round 2 in September on the 27th.

So to tie this all up I want to say a huge thank you to all of you who I have got to know over the past year. You have shown me so much love and kindness and I can’t thank you all enough for it. Thank you for staying strong even on the worst days and thank you for using your voice and reminding the world that there are #millionsmissing.

Day 4, getting creative with spoons

I wish people without M.E would realise that 70% of life for us with M.E is just too much.

image

M.E isn’t about being lazy, it isn’t about our diet and it certainly isn’t in our heads. These are all ideas that have been banned about for years that have no scientific or medical proof but people still believe it.

I often wish that those medical professionals who for years told me I was “just depressed” could live in my shoes, just for a few hours, on one of my bad days. I always say I would never wish this on anyone and that is true, but I do feel that if those who doubt could just experience it for a few hours than what a difference it would make. We might finally get taken seriously, have some proper medical research done and not get judged so harshly.

I was chatting to a guy who lives in Australia who has had M.E now for 2 years. He has two teenage daughters who’s lives he is missing out on. He felt that the “treatment plan” his doctor was giving him was only making everything worse. He and his wife made the decision to send him to a Chronic fatigue treatment retreat. It is of course costly but here he has been receiving the correct treatments, has been helped to find out which foods his body needs and which he doesn’t, they have him taking clean supplements and they plan in lots and lots of rest. In the 6 weeks he has been there his health has improved 2 fold and he finally can spend time with daughters again without it causing him to majorly crash.

What I want to know is how these CFS centres who have a proven record of helping people manage, cope with and eventually beat M.E are not taken seriously by our NHS’s. The only “treatment plan” that is offered to those of us with M.E is called graded exercise which is as useful as telling someone with a broken back to just “walk it off”.

I’d love to see more research done into helpful treatments, have GP’s given the correct information that will lead to them giving the proper support to their patients. I only wish I knew what I could do that would make the people who can get this done realise just how much M.E patients would benefit. It could changes lives and get us back to how we all want to be, healthy.

A spoonies adventure in London

Nick and I recently went to London to visit family. We took Sam with us and he had a ball on the train. Thankfully he travels really well and in his usual happy style he made lots of friends and was very comfortable taking up as much space on the train as he could.

image

We planned our trip well as we had 5 days to play with. This meant when we arrived in London I could rest up and Nick, Crellin and Emma could play board games.

Part of the reason we wanted to do a trip to London, apart from to see family, was that I had never been to the museums and Nick hadn’t been to the Greenwich maritime museum. We kicked off our three days of Museums by heading straight to Greenwich maritime. Once there we heading to the Observatory and the view of the city from there was quite spectacular.

image

After having had lunch and allowing me a bit of rest time, Nick and I headed to the British museum to see the Ancient Egypt display of Mummies. The museum was a little too crowded for me unfortunately, I find busy rooms to be exhausting, but the display of artefacts and mummified body parts were fascinating. It really hit me half way round that these linen wrapped human shapes, behind the glass, were actually real people who had lived real lives. It must have been such a wonderful time to live when the Egyptian tombs were first discovered. All the treasures which were unearthed, the study that would have gone into finding out what each item was and why it was placed in the grave. I could have spent another full day reading and studying all the items which were there. We are so lucky here in Britain to have all this information, art and history surrounding us and all to be seen for free. It’s a shame, myself included, that we don’t take advantage of it more.

The next day we decided as we had only seen such a small section of the Birtish museum to go back and see some more. We walked our way through the world of the Inca, into the chambers of Egyptian gods and out through the Parthenon. A fascinating journey around the world in a few short steps. As a child I didn’t have much patience for learning, probably due to my dyslexia and love for being active. Now however I can’t believe there is so much I didn’t know. I could have stayed in the museum forever but as Nick very rightly pointed out I was starting to flag and really needed a bit of rest time. He managed to get me quick stepping my way out after stating that there was a Waffle House around the corner and we could stop there for lunch. We were little pigs and got a huge pancake each, I added fruit just to make myself feel a little healthy, and a waffle to share.

image

That evening we had booked tickets to go see the Cirque du Soleil show Amaluna. Nick and I have seen Cirque du Soleil before while we were in Vancouver, so I had an idea of what to expect. I was however happily surprised that this show was nothing like the high speed one we had see previously. This show was stunning! The music was so soothing and really told the story of love that was unfolding in front of us. The acrobatic displays were breath taking and the lady who did the, as I call it, stick trick had me and everyone else in the hall holding their breath. The whole night was just magical.

image

We were late home that night so it was straight to bed for me. I really couldn’t be more thankful for both Adam and Emma giving up their bedrooms for me while we stayed there. It makes such a difference to my health having a good, comfortable nights sleep.

The next day I was really starting to feel all this activity catching up on me. Nick and Adam where happy to go at my pace so we wondered around the V&A, looking at all the beautiful cloths, embroidery and jewellery, then making our way to the casts/replicas of items from around the world. It was fascinating to read that all these replicas were made so that people in Victorian times could physically see the statues, pillars and art they read about in books without having to travel the long distances to see them. Travel these days is so easy and fairly cheap so we take for granted that if we want to see Italian design we can just hop on a plane and be there in a few hours. Also with the internet you don’t even have to leave your house to immerse yourself in culture. However in Victorian days travel was expensive and time consuming so these replicas must have felt magical and awe inspiring to have so readily available.

From the V&A we had to take a wee break to re fuel as I was really flagging. We found a great takeaway inspired shop called Leon where I got the most delicious fish finger wrap and baked chips. This made for a very happy Amy and after the food was consumed for a less grumpy Amy too.

After lunch we headed to Portobello Road as Nick wanted to show me the markets. By this point I was too exhausted to care, which was a real shame as Nick and I do love a good antique shop, but I did enjoy looking at all the colourful houses. We ended the day a bit early, which I was uber happy for, and headed back to Stratford. On the way back Adam noticed my physical decline, which does happen quite rapidly, as I started to trip over everything, lose my footing on stairs and jumble all my words together. Not the best while you are trying to fight your way through the busy London Underground.

I was really glad to have a very early night that night and pleased to be heading home the next day too. I had a wonderful time in London and I really can’t wait to go back and explore some more of the museums. We still have plenty to see and museums we still haven’t visited. I would however change the way I structured my days. I would definitely make sure I had more food to hand to boost my energy levels, along with doing less underground travel as I find it the most exhausting way to travel. I’d make sure I stick to breaking the day up so I have time to rest, that way I’m not running on adrenaline and then having a crash out of the blue. I’d also listen to Nick when he says “Amy I think we should stop for a wee rest/ food” as he really does pick up a lot quicker on my tiredness levels than I do.  Not that I like to admit it to him!

Day 3 ,Something that makes me feel better

So the month of May has passed and I know it’s no longer M.E week but I finally feel clear headed enough to be getting on with my M.E week blogs.

Day 3, please feel free to look back over the past 2 days for a wee refresher, is to name something that makes you feel better. Well I have quite a few things that make me feel better so I am going to list them all.

Firstly is all the love and support I get from Nick. I don’t always appreciate everything he actually does for me. On days where everything hurts and I feel so ill and depressed that I just want everyone and thing to disappear I am blind to just how much he has given up to look after me. However on my good days I see how much he truly loves me and knowing that instantly makes me feel better.

Second is Sam. He knows when I am having a really bad day and he snuggles up with me so I am never alone. Just seeing his happy wee face brightens my day.

image

Thirdly is my uber wonderful friend Catherine. Everyone needs a friend like her. She is always ready to listen and never judges. She has the most horrific sense of humour, just like I do, which makes for some hilarious daily snap chats. We love all the same awful movies and she is more than willing for me to turn up at her house in my PJ and watch them with me. Plus she doesn’t mind that when she is invited for dinner she is put to work and has to leave before 8pm so I can go to bed. The best friend a girl could ask for.

Forth and finally is Buttons. I am an actual crazy lady when it comes to buttons. I find it so soothing sorting them out into matching pairs and colours. It’s the reason I decided to start up Buttons and Sam as I got to combine my love for jewellery and buttons, plus I wanted an excuse to shop for more buttons to add to my ever growing collection.

image

Since I got my diagnosis, for a second time, last year I have been slowly trying to teach myself to not care about what others think of me. It’s so hard as we all want to be loved, accepted and valued. I feel, and know, that when I tell people I have a chronic illness so I don’t work as I am concentrating on getting better, that they judge me. They look at me as a slacker or someone who just doesn’t want to have to work so probably lives off benefits. I have to keep reminding myself every time someone asks me that question that their opinion actually doesn’t matter. The reason I am teaching myself to do this is that I want to get better. I want to go back to work and start a family one day, but that won’t happen if I don’t get better and I won’t get better if I am constantly worried about what people think of me and listening to their negative opinions. I need to fill my mind and thoughts with positivity.

image

 

 

Day 2 M.E week

Day 2 of M.E awareness week and I want to talk about my favourite low level activities.

Being ill with M.E means I never really know one day to the next how I will wake up. I can feel great, be well rested and think that I will have all the energy I need for the next day, then when I wake up it’s like I’ve been hit by a bus. It goes the other way too, although less often, where I can feel awful before bed but wake up the next day feeling grand. This is why it’s always good to have a few low level activities available and preferably ones I can do in bed.

My first activity is colouring. I know it sounds like something kids do but there truly is something really therapeutic about it. I really enjoy mismatching colours and playing with shading. The great thing about it is that the final result doesn’t need to be a master piece. Colouring works as a therapy and I can make it as messy or neat as I like.

image

My second low level activity is word puzzles. I need to have a bit more brain power for this but when I do I can easily spend hours happily doing crosswords, word searches and playing boggle. I’m not the best person with words as I’m dyslexic and M.E only makes it worse. However on the days where my body might not want to work but my brain won’t shut up, I really enjoy having the mental challenge and it’s a real ego boost when I find a 6 lettered word in boggle.

image

My third low level activity is jigsaws. I have an app on the kindle where there are 50+ 300 piece jigsaws and I am slowly working my way through them. I know 300 piece isn’t big but you can’t have a 1000 piece jigsaw on a kindle, much the pity. When I have more energy I do larger jigsaws but on low energy days 300 pieces is quite enough.

Forth and final low level activity is reading travel magazines. I love nothing more than to plan where Nick and I are going to travel to next. I rip out pictures, stick them in a scrap book and write interesting bits of information on the places we will visit. The great thing about making the scrap book is that I get to feel like I am being creative when I am having a bad day and I will never run out of places to read about. My life plan is, after all, to see as much as of the world as I can.

image

 

 

 

For me M.E is…

Day 1 of the #1weekaboutM.E  and my first picture is Smile for M.E

image

Now I know I’m not smiling in this picture but this picture does make me smile. It makes me smile for lots of reasons but mainly because it reminds me that I have beaten this illness once already and I will do it again.

For me M.E is constant.

M.E is a chronic illness which means that it will knock me down again and again. This is my life and if I could take a magic pill to get ride of M.E I would.Everyday is a battle to get up, find the energy to wash, brush my teeth, get dressed and put on a smile. There are days when I just want to scream at the top of my lungs that I am really NOT OK but I just don’t have the strength. M.E has taken so much from me but it has shown me one thing and that is that I am a fighter.

I used to climb glaciers and mountains, rock climb, walk for miles and run 5k fun runs and I could do all of them with out a second thought. Now, climbing stairs can be more draining than all of them combined. This means when you see me walking places, cooking meals, standing in crowded rooms and laughing, that’s me fighting. I’m fighting my fatigue, pain and sensory over load. I’m fighting everyday for normality. I am a M.E warrior.

 

One week about M.E

May is the month for all of us who suffer with what are called Invisible illnesses to get campaigning and have our voices heard.

I enjoy all things which use social media as a soap box as a hashtag can be heard more loudly and further around the world than any strongly worded letter.

One week about M.E starts today on the 11th May 2016. I love this campaign as it’s a great way to find new spoonie friends and to really help support each other.

How this week works is through the hashtag #1weekaboutME Each day for a week I will be posting on my blog, Instagram and Facebook a photo and a message to help get the word out about M.E and to let other spoonies know they are not alone.

image

Also on the 25th of May I will be taking part in a world wide protest for all those forgotten by our health care system. I will be putting out a pair of shoes on my doorstep with a sign explaining what the shoes are doing there. Mine will say something like “I can’t walk to the shops due to M.E”

Anyone can take part in this and I encourage you all to get involved in it too, so please do join in. You can put shoes out with a sign saying ” I’m doing this in support of those who have M.E” or “In support of friends/family”.

Once you shoes and sign are out then please remember to take a picture and post it on social media with the hashtag #MillionsMissing. I’m hoping to see facebook, Instagram and Twitter light up with this hashtag and it will be a real encouragement to those who will be taking their stand in London and Washington that day.

image

The good, the bad and the sleepy

Nick and I went away this week for his birthday. It’s the first one we have had together for a while as he is always away at sea. I decided that we would take the bus to Grasmere and stay over night at the Travellers rest. If you are ever in Grasmere I would highly recommend staying there as its a lovely homely pub/B&B.

We took Sam with us on this adventure and he had the best time I would say out of all of us. He loved the bus journey as he got to watch the world go by, say hello to people and sleep on nice comfy seats.

image

I had found recently that I am getting more and more prone to travel sickness. It’s frustrating as I have always been a great wee traveller till the M.E came back. Thankfully on the journey there though I was alright and got to enjoy watching the beautiful views of the lakes go by and do some fantasy house shopping. You know if I had £1million.

When we arrived in Grasmere we went straight to the gingerbread shop, it wasn’t hard to find as you just had to follow the delicious smell of ginger. Nick had been there before but I hadn’t and was surprised to find just how tiny it was. It’s such a cute little shop with great staff and is well situated in the centre of town. We didn’t have a long wait to get our supply and once we had made our purchase we were off on our first walk up Silver Howe.

Cumbria is well known for its unpredictable weather but it was hilarious the 5 minute weather change we got walking up Silver Howe. First there was rain, followed by snow to then be greeted with glorious sunshine just in time for us to stop for a picnic lunch.

image

After lunch we continued our walk up to the top and were treated to the most spectacular views of Grasmere.

image

Sam, I’m pretty sure, ran up and down Silver Howe about 4 times before I made it to the top. It was lovely watching him run about like a crazy person, sniffing everything and yes rolling in sheep poop. Thankfully we found a stream and much to his horror we washed the beautiful mess he had gotten all over himself off.

When we arrived at the Travellers rest the girls made a right fuse over Sam and then showed us to our room. We had a lovely veiw over the fells and Sam enjoyed watching the sheep out the window. Since the hotel is pet friendly, Sam got to join us for dinner. He was exhausted though from all his fun so slept his way through most of it. Our bedroom was very cozy and comfortable and once we had had dinner we retired for hot chocolates and some delicious gingerbread.

The next morning we were up early, well early for me, and had a lovely cooked breakfast. Then started on our next walk which was up Butter Crag. This walk was on the opposite side of the lake to Silver Howe so as we walked we got beautiful views over the lake and onto Silver Howe. When we reached to top of Butter Crag  the snow decided to start coming in so we got to watch the clouds descend off the mountains and sweep into the valley.

image

Thankfully we only had the decent to do in the snow but I think the snow made it all look far prettier. It came in quite fast and lay lightly on the ground but only lasted a few minutes. It was enough time though for enough snow to pile up on Nicks bag to make a little snow ball. We throw it for Sam and he looked so shocked when he caught it and realised how cold it was. Wish I had taken a picture of his face as it was adorable.

We finished our time in Grasmere with a nice gentle walk around the lake, stopping off for a coffee before getting the bus home. It was such a lovely few days and I am so glad we did it as it is a massive achievement for me. However, I am suffering for it now.

Today is my third day in bed with a swollen throat and full body weakness. It hurts just to have the weight of the duvet on my legs let alone Sam who is demanding cuddles and how could I ever refuse such a cute face. I am slowly starting to feel stronger, hence why I am managing to write this today, but it is so frustrating that something which I used to be able to do daily I now can’t do without feeling awful for a week after.

M.E is a rubbish illness and an unbelievably frustrating one too. It’s something that I thought I had got rid of but now have to factor back into my life. It’s the kind of illness you only truly see when those who have it either let you in on their awful days or if you make an effort to get to know more about the illness. There are many faces of M.E and many people who battle with it daily. Most people who have it will only ever have people see the “good day face” of their illness not the “bad day face” so here is a picture of my good and bad days so you see both of mine.

image

Nothing says beauty like puff eyes!

 

 

Buttons and Sam

As many of you know I have been really struggling with the idea of going back to work. There is a huge part of me that really wants to be working again as in today’s day and age being seen as not working is unacceptable and labelled as laziness. I can hear you all thinking “but Amy, you have M.E! ” and you would be right, but that doesn’t stop people being cruel with their words. Every time someone asks me what it is I do and I tell them I don’t work at the moment due to illness I see that look, the look of “well you don’t look ill”. The worst is when people say ” so when do you think you will be well enough?”. I feel like screaming when people say that, cause if I knew the answer to that then I’d probably also know the answer to this weeks lotto numbers and I’d be a millionaire. The other part of me however knows I am nowhere near well enough to be going back to work full times as some days just getting out of bed takes everything I have, so I can’t imagine trying to add in a shift at work as well.

Recently on the days that I have been feeling well enough, I have been clearing out my old craft boxes. I have so much scrapbooking stuff that the attic was starting to get a bit cluttered with all my boxes full of old papers, pencils, paint etc , so I thought it was about time I got it all sorted. While going through the boxes I came across some of my old Jewellery making findings, I had completely forgotten I still had them. It got me thinking about what I should do with all of them and the more I went through box after box the more I thought I could totally start making little bits of Jewellery again. I found lots of loose beads, gemstones, silver wire, earring hooks and post and realised that I really did have everything I needed to make this idea a reality. I have been slowly making fun little earrings, two or three at a time, and it’s been so much fun getting back into what I have always loved doing, which is creating things.

Nick and I came up with the name Buttons and Sam over breakfast one morning. I’d thought about calling my little business Sam’s buttons but it just didn’t have the right ring to it. Nick suggested Buttons and Sam and I loved it. I sent away for a business stamp to be made and when it finally arrived Buttons and Sam was officially created.

image

I have spent the past two months, at a bit of a snails pace, making up a back stock of button earrings and brooches. I am going to start small and work at a nice steady pace so there isn’t any pressure on myself. I want this little business to be a real pleasure not a chore and I want it to be something which will help improve my health not make it worse. Once I have the Jewellery side of it sorted in my head and down on paper, I am going to start making little bits of home design too. I made my first sample piece which is a Christmas decoration, yes I am aware it’s only March, the other day and was really pleased with how it turned out.

image

This whole venture has really given me the boost I needed in both motivation and self confidence. M.E takes so much from a person and leaves you feeling quite broken and useless. I am however not going to allow it to make me feel this way and I will be sorry if I let other, who judge my earthly worth, make me feel that way too. Buttons and Sam may only be a small attic business but to me it feels a lot like I am concording the world.

You can find my creations at www.etsy.com/uk/shop/ButtonsAndSam

 

 

 

 

 

 

IBS and food intolerance

I’ve been having a really rubbish time with food at the moment. It seems like everything I eat disagrees with me. Something as simple as say bread, can be find to eat one day but the next day I will be besties with my toilet because I’ve eaten it.

Last time I had M.E I became totally intolerant to lactose. This was a very sad time in my life as I had to give up ice cream and milk chocolate. A very good friend of mine gave me this advice “Just eat it while you are sitting on the toilet, that way you still get to enjoy it.” This advice made me laugh a lot and I did contemplate it for about a second until my brain kicked in.  You see, just needing to open my bowels wasn’t the only side effect I had with being lactose intolerant. There was cramping, sweating, sometimes vomiting and gas, lots of gas. So once you have weighed all of that up eating ice cream became less appealing.

This time round I have a milder intolerance to dairy. Thankfully dairy milk chocolate is still on the menu, even if ice cream, milk and yoghurt are not. Unfortunately this time round I seem to have more of an issue with IBS as there is a lot of days where my body just seems to hate all food and drink that’s put in it. Those are the days where I shy away from company as I smell like some kind of bog monster, even Sam gives me disgusted looks.

I have tried cutting out certain foods from my diet and have found that kicking caffeine out has made a huge difference to both my tummy’s happiness but also to my health in general. Avoiding milk, uncooked cheese, cream, highly fatty foods, processed foods and high sugar value food helps too. This however doesn’t stop my stomach from just randomly deciding that it’s going to kick off. I went to the doctors about it and he checked that I wasn’t celiac or that there wasn’t something wrong with my bowels. After all the tests came back clear he was a little stumped with what to do. Rightly so he told me to just keep avoiding the foods that upset my stomach and to come back in a month if things hadn’t cleared up. I decided to have a chat with some of my social media spoonie friends and see if they had any good ideas/hints and tips that might help. As always they were really helpful and gave me loads of suggestions. I decided to try the peppermint tea suggestion first, mainly out of ease, and WOW did it work!

image

 

I went down to my local Holland and Barrett and bought some tea. I didn’t think I was going to be a fan as I imagined that peppermint tea would taste a bit like warm toothpaste. I was very happily surprised when I found out that I actually really liked it and after a few days of drinking it my tummy was a lot better.

I now have a stash of peppermint tea bags with me at all times and after trying a few brands I now buy Marks and Sparks as you get 20 tea bags for a pound. Mum would be proud!

I am slowly learning little tricks here and there which are really starting to help me cope with/manage my symptoms. I am so glad for the help I get from fellow spoonies and even though I’m not a great fan of social media it is really helping me to meet some amazingly strong people from all over the world.