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Ode to my Bed
I feel like I spend,
half my life in bed.
We’re together so much,
we really should be wed
It’s not much fun,
with a bed for a friend.
Lying there for hours on end,
sends me round the bend
It sees me at my worst,
when I hide from the world.
Sees my pain and tears,
as I slowly come unfurled
It’s not much fun,
with a bed for a friend.
But it takes me as I am,
there’s no need to to pretend
Even though I hate it,
it truly knows me well.
And it must surely,
have some tales to tell
It’s not much fun,
with a bed for a friend.
But it keeps me warm and cosy,
and helps me rest and mend
Winner Takes It All
Having watched Mamma Mia countless times with my daughter and being lucky enough to go to the show for my birthday, the song Winner Takes It All blows me away every time I hear it, it’s so powerful, full of emotion, telling the story of what it’s like to be left behind, in the case of a song by a lover.
Each time I hear it I feel that is could relate to other things too, things I have lost like my health, my career, my ability to have children, my independance and my value.
Due to my hearing loss it is difficult for me to hear music, but this is one song I can hear clearly. I miss having music as a companion in the long hours spent alone and also have lost the ability to read music and play instruments.
In the film this song is sung on an empty cliff top with the sea in the background and I think there is something about standing there letting it all out, like going to a cliff top and screaming and letting go.
Lyrics taken from AZlyrics
1)I don’t wanna talk
About things we’ve gone through
Though it’s hurting me
Now it’s history
I’ve played all my cards
And that’s what you’ve done too
Nothing more to say
No more ace to play
2)The winner takes it all
The loser’s standing small
Beside the victory
That’s her destiny
3)I was in your arms
Thinking I belonged there
I figured it made sense
Building me a fence
Building me a home
Thinking I’d be strong there
But I was a fool
Playing by the rules
4)The gods may throw the dice
Their minds as cold as ice
And someone way down here
Loses someone dear
The winner takes it all
The loser has to fall
It’s simple and it’s plain
Why should I complain?
5)But tell me does she kiss
Like I used to kiss you?
Does it feel the same
When she calls your name?
Somewhere deep inside
You must know I miss you
But what can I say?
Rules must be obeyed
6)The judges will decide
The likes of me abide
Spectators of the show
Always staying low
The game is on again
A lover or a friend
A big thing or a small
The winner takes it all
7)I don’t wanna talk
If it makes you feel sad
And I understand
You’ve come to shake my hand
I apologize
If it makes you feel bad
Seeing me so tense
No self-confidence
But you see
The winner takes it all
The winner takes it all
8)So the winner takes it all
And the the loser has to fall
Throw a dice, cold as ice
Way down here, someone dear
Takes it all, has to fall
It seems plain to me
If I was talking to my illness the first verse seems to say, we have tried everything you have got what you want and now it’s too painful to talk about it, you have won and taken over, it’s history and I have to accept the way it is.
The second verse says the illness takes it all and leaves me behind feeling small and insignificant, the illness has won.
Verse 3 seems to say it felt safe when I had my health and I was sensible, but that doesn’t matter it still got taken away. We take our health for granted and it can be taken away without our consent.
Verse 4 fate takes control and has no emotion taking away health, it also speaks out about death saying “And someone way down here, Loses someone dear” and it feel like a draw who gets taken and who is left behind, as it is with who gets hit by illness. The things you hold dear are taken away by some stronger force and you have to accept that and not complain.
In verse 5 which is obviously more about the betrayal, it still says I miss my health, but I have to accept what I have been dealt even though I miss what I had., you have to “play by the rules” of society and no complain or be sad. This can also be true when someone has died, they have been taken away, but society doesn’t like us to talk about the pain of the loss and encourages us to move on and make a new life.
Verse 6, is saying it’s all out of our control, we may recover we get back what we lost, but again it’s not in our control something else decides it and we have to accept that and submit to the wishes of the illness or situation. So even though there is a glimmer of hope, it can go either way. I guess we all have high hopes of a cure or recovery, but we can’t control how or when or if this happens.
Verse 7 talks about guilt and having to keep feelings to yourself so as not to upset others, robbed of self confidence not allowed to discuss the upset. Yet wanting to speak out and wanting people to know the hurt.
Verse 8 A repeat of having everything taken away on the “throw of a dice” controlled by something with no cares or emotion and someone has to be the person who takes the fall and suffers while others seem to have it all.
I have been in a relationship where I was left for someone else, so can see the song from that side too, the betrayal and the what has she got that I haven’t, but thats a long way in the past, although I think the effects do live on in relationships with others.
I hope this makes some sense. Songs usually tell a story or carry a message, but most of the time we miss it or may not feel it applies to us, but then looking at it a slightly different way can make it meaningful and speak to us.
This blog has also been published on The Mighty a website for people to share stories about illness and Disability, “We Face Disabilities and Diseases Together” and “We believe in the power of stories, the strength of communities and the beauty of the human spirit” (The Mighty)
Tears and Salad pt2
My last post ended as we boarded the Eurostar for Disneyland Paris. The assistance was great and we had seats at a table, so far so good.
Food always causes problems, but as I had ordered a GF meal I thought it would be ok. I got a GF chocolate oat bar, a yogurt and a pot of jam! Sadly my diet is dairy free too so this wasn’t really suitable, not to mention disappointing when everyone else had bread and croissants too. The meal was included in our tickets. We spoke to the the person sorting the food and he said he would try and find me something in the buffet car. Eventually he returned with a bag of gluten free pretzels, which were nice, but that was my lunch and i couldn’t eat all of them as they are dry and salty. I decided to eat the oat bar too, but it was so chocolaty I really didn’t like it, but needs must when you are hungry and need energy to keep going.
We had looked into food options in Disney before we left home as we had heard that it was difficult to eat GF, but we didn’t realise quite how bad it would be. We knew Planet Hollywood had a GF menu and we headed here on the first night. There was a decent choice, but mainly salads, although they were good and generous salads, the only dessert was sorbet. of course the choice of non GF food is amazing.
In the park during the day there are only fast food outlets and nowhere to buy snacks except ice creams and cake. You also can’t eat your own food in the park. There isn’t anywhere in the parks or nearby to buy anything anyway. During the day the only option for me was a very poor fast food salad, lettuce, tomato, cucumber and a little bit of cheese or chicken, with no dressing.
Breakfast in the hotel was pretty good, they bring out a GF basket filled with bread, biscuits, cakes etc. The buffet included fresh fruit and cooked food, but no GF cereal. I ended up having a lot of fruit and the GF bread, and taking some of the bread and cake from the basket for later in the day 😮
All the hotels have an evening buffet, but the GF choice was very limited and the meal was a fixed price which we couldn’t afford.
If you stay in the park to watch the evening parade there is a mad rush for the eating places after so that evening we decided to head for Earl of Sandwich. The only gluten free choice, you guessed it salad! The salad was ok, but when your family are tucking into huge sandwiches, hotdogs, chips etc it’s rather soul destroying. The second time we ate in the Earl, I was cold and fed up, so asked if the soup was GF to go with my salad. They said soup was GF, but when it arrived it had huge croutons in it. I was so upset and tired and hungry that I just threw the croutons on the tray and ate the soup. This was getting so upsetting. I has said before we arrived that I didn’t want food to become an issue, but on top of losing my Dad and being exhausted it was too much and more tears were shed.
We did have a few snacks that we had taken with us, but they could only be eaten in our room.
Our final food disaster was in Paris. We decided to have lunch in the restaurant up the Eiffel Tower, having asked and checked with kitchen that there were GF options we got a table and ordered drinks. When it came to it the only GF option was fish and veg, I can’t eat fish it makes me sick, so I ended up with a very expensive plate of vegetables, whilst the others of course had a delicious meal and dessert.
Anyway enough of food. We had a good time, although it was hard and exhausting.
Being in a wheelchair has it’s advantages as you can get a priority pass for the rides which saves long queues, which is brilliant. Emily would have got so frustrated with long queues and it would have been more exhausting for me. You do upset a lot of people though as you are effectively jumping the queue and there are a lot of people who qualify for the priority pass as well as people who have booked fast passes. For meeting characters you are given a time to go back again rather than queuing, but sometimes there are no slots left so you have to get there early.
I think we saw most of the parks and went on many rides, but not the very fast or scary ones, the worst we did was Thunder Mountain, definitely a one off experience! Emily would happily have just gone around all the time looking for the Characters and meeting them and getting autographs, she has a book with them in and has photos with them and we are hoping to get a scrapbook made too, to preserve the good memories rather than the issues around food and losing my Dad. One morning we had Breakfast with Characters which I think was highlight for Emily.
Selfie in paris
Up the Eiffel Tower
Boat on the Seine (or in my case Insane)
Thunder Mountain
Life by Social Media
In the last 10 years our lives seem to have been totally taken over by social media. There are hundreds of networking sites and blogs, most of which I have never heard of, but then I am not today’s young generation.
I do admit to using Facebook, which for some reason is rather addictive and I occasionally use Twitter, I also write my blog of course. But why? Facebook upsets me, and there have been many studies that show Facebook causes depression and jealousy.
As someone who spends most of the day alone, Facebook appeals as it connects me with others, but at the same time it makes me feel I am missing out on normal life. It can help to connect with people in the same situation, but then I find it gets a competitive about who is the hardest done to and who has the worst symptoms.
I find it hard to be part of a group face to face due to hearing issues, lack of confidence, poor self esteem and poor concentration. Online groups enable me to be more confident and speak up more than I would naturally do, but more and more I am finding that people still want to put me down or pick on me and many of the groups become dictatorial, with a few people who rule the roost and others who are not able to say what they want and have to toe the line or be pushed out, therefore there is no chance for exchanges of ideas or discussion and freedom of speech gets lost.
The main feature of Facebook and Twitter is to post what is currently on your mind, a status update, which is how you know what people are up to. On several occasions Emily has been picked on because of something I have written, I never post really personal stuff, but things I think are of interest or a bit of fun. I also sometimes use it to post current frustrations, but I have been told to stop feeling sorry for myself, or that what I have written can’t be true or that I am always negative. This puts me off writing a status and again I find my self being controlled by others, when the whole idea is to say what I feel. “Character is always lost when a high ideal is sacrificed on the altar of conformity and popularity.” Charles Spurgeon
As with any group of people it seems some people can say whatever they want and will post lots of comments and try to make out they are better and more important than others.
Last week I decided that I would leave most of the groups I was part of as I couldn’t cope with the tension and bad feeling even if it wasn’t directed at me. I also decided to only post positive comments. Consequently I have no one to share concerns or problems with. Many of the discussions I had were in small private groups related to health problems or interests not on a general Facebook feed. I also deleted a large number of people from my friends list as I had no idea who they really were, but I just seem to accumulate vague acquaintances who then feel able to comment and judge me. I don’t mind differences of opinion, but what makes one persons life more important than anyone elses?
I began writing a blog to share my experiences of having ME and to share my craft interests, but again it feels that it’s a big competition to see who can get the most reads and most shares and it’s not really about what you write. I have very few reads and that shouldn’t matter, but I do get upset when others people say they have hundreds of reads and what they have written is nothing special or even of great interest. “Truth can’t be judged on the basis of popularity.” Woodrow Knoll.
Today my daughter is upset because they had an Easter Egg competition at school and she didn’t win. It’s hard to explain that not many people do win and that it’s about taking part, especially when it seems the same people win all the time, or someone who has seemingly put less effort in get rewarded more. I wondered if it would be better if it wasn’t a competition and no one won, but I guess most wouldn’t bother then, as it’s the chance of winning that is the incentive. Emily did find it difficult as she wanted to take part and wanted to win, but she knew she wouldn’t win, but also felt that she would be left out if she didn’t take part. Social media doesn’t help with this either. it’s a fine line between sharing what you have done and showing off or bragging and we all get caught up in it and many are upset by it.
Most days I think I would be better if I left social media and that I would be happier and feel less got at and picked on. But at the same time I would become more isolated and lonely. It also feels like the only way you find out information about what is happening to people is through social media, but if it’s not important enough to tell you about personally then you probably don’t need to know.
When I write my blog I want to share what I have been making or get some of my thoughts in order. There isn’t really a reason why it needs to be done publicly though, except we all need some appreciation and feedback at times. I had hoped that having the blog would make me feel more organised and that I would be able to have discussions with like minded people. The only comments are get are Spam and have to be deleted. If I read someones blog I try to leave a supportive comment, it doesn’t take much, but again I think it all comes down to fitting in and being the right person.
You would think that after 45 years of being an outsider and not quite fitting in with anyone that I would accept it and stop trying, but there is always the hope that something great will happen. Perhaps I need to adopt this strategy;
When I hear my daughter saying she feels she has no friends and doesn’t fit in, it’s so hard to comfort and help her as I feel just the same and I don’t know how you do fit in and be widely liked. Like many other things it probably happens when you stop trying and don’t worry about what others think or say.
Living with a Chronic Illness means that you stand out for all the wrong reasons and are judged on what you are unable to do rather than what you can do, social media often reinforces these things even with people in similar situations.
So why do I spend so much time online and scrolling through Facebook? I don’t want to be lonely, I want to be normal and fit in. I am unable to work or get out of the house much so it’s a connection with the real world. Sadly the real world does all the things I want to be able to do and I spend all my time seeing what others can do as they are more physically and financially able than me. I try to make friends, but the goals seem to be to just collect as many people as you can even if you don’t really know them and then you have to like or comment on things they say in order for them to like what you say. I get fed up of posts that use emotional blackmail to make you like and share someones post and being told that the person who made the posts knows who cares enough about them to repost. Then there is the other extreme where you repost something someone has said because you like it and find it interesting and you get told off for sharing a post without permission or acknowledgement. It’s like being back in the school playground, I am to old for that sort of pettiness and I never liked it at school!
People seem to have lost the art of being together and conversation. You can be in a room full of people and everyone is on their gadgets playing games or using social media. talking to people they hardly know, how sad is that.
I am dreading the day that Emily is old enough to use Social Media; like me she is very sensitive, gets picked on and worries about what people think about her. Telling her she can’t use it would instantly make her feel left out and not normal.
I have cut down the things that show on my newsfeed and tried to keep the positive things and things that interest me, rather than focusing on being ill. I use Facebook as I spend a lot of time on my own unable to do much due to pain, fatigue and poor concentration, but I am unable to relax and rest properly so need something that requires little effort, but is Facebook really the answer?
I write a blog to sort out my feelings and express myself, this can actually be quite draining and a post can take days to write, again is this the best use of my time and energy? Once I have published the post, I then get hung up on how many reads it gets, but it shouldn’t matter. You get more reads the more places you share in, but then there are places that don’t allow blog posts and again it gets stressful and I wonder if I have shared in the wrong place. Some people I know gets hundreds of reads, I get about 10, why is that, what do others have that I don’t? Why does it matter?
Another social side of Facebook is finding out about events going on. I like to know if there is a local craft show or sale or a charity event, but then I have to decide if I am well enough to go and if there is someone who can take me and if they will get anything out of it. If I can’t go I feel I am missing out and or letting down the person. It’s got to the point now where I hardly attend anything, so maybe it’s better if I don’t know what I am missing?
I like seeing what other craft people are up to, but then I feel that my things are not good enough or wonder how they can make so many things and run a business, when I manage so little. I often wonder if crafting is the right thing for me, but I do enjoy it, I’m just not very productive. Trying to share things on my craft blog and in my shop doesn’t really seem to be working and I wonder what I am doing wrong, but I guess it would be the same if I was standing at a craft stall and no one was interested. If I do sell my items to a live audience I am not there so don’t know what interest there is and what people think, but again it is a disappointment if most of it comes back. I think the old adage “It’s not what you know, but who you know” a lot of the time.
World Book Day
Today is World Book Day.
“This is the 20th year there’s been a World Book Day, and on 2nd March 2017 children of all ages will come together to appreciate reading. Very loudly and very happily. The main aim of World Book Day in the UK and Ireland is to encourage children to explore the pleasures of books and reading by providing them with the opportunity to have a book of their own. That’s why we will be sending schools (including those nurseries and secondary schools that have specially registered to participate), packs of Book Tokens and age-ranged World Book Day Resource Packs (age-ranged into Nursery/Pre-School, Primary and Secondary) full of ideas and activities, display material and more information about how to get involved in World Book Day.” (World Book Day)
Anyone who has been out this morning will, I am sure, have seen lots of children dressed up as book characters as many school have a dress up day to inspire the children. It does of course fall mainly to the parents to create an outfit or buy one of the many available is shops now. I like to create an outfit as I think it is more fun and means that you can talk to your child more about it and work on ideas of how to create the character. We have had bought outfits in the past too, depends what Emily wants to be, and sadly she hasn’t always appreciated a home created outfit as it is not seen to be cool!
This year Emily decided on Peter Rabbit. We bought a blue cardigan and beige leggings, teamed them with a white t-shirt, bought some ears and paw print gloves. I made a tail by sticking cotton wool onto a circle of felt and attaching a pin. I was going to knit a carrot, I had found an easy pattern, but then I cheated and borrowed a ready knitted one from a friend. The carrot is now pinned into the cardigan pocket so that it doesn’t get lost, fingers crossed! I had to do a quick sticking of gold card to the buttons when we discovered last night that Peter Rabbit had brass buttons!
I offered to paint her face, but she said no as it would come off. So here she is Peter Rabbit
In the past we have done
Queen of Hearts
Alice in Wonderland
Gemma the Gymnastics Fairy
Happy World Book Day, would love to see pictures of other people’s outfits or just a comment about what you would be, there are so many characters to chose from. I saw a lot of Princesses this morning, some Harry Potters and Where’s Wally.
2016 at the Shaw’s
It’s that time of year again, another year has passed and I always feel like it’s another year gone and nothing has changed, so it’s a good time to look back and notice what we did and realise we have actually done things.
Last Christmas we had a very poorly cat and we didn’t think he would see out 2015, in May he celebrated his 17th birthday and is still happily plodding along, he is more “chatty” and friendly than he has ever been. Sorry to those of you not keen on cats, but I think he is gorgeous and try not to complain too much when he wakes me at 5am! Although I can’t resist the temptation sometimes to poke him when he is asleep, sometimes have to just to check he is still breathing :-O
At the beginning of the year Rob had his 2 yearly MRI and they said it was unremarkable, we assume that is good news, but wonder sometimes if they mean there is no Brain to remark on! I got the same comments when I had a Colonoscopy in June, there is obviously no brain inn my Colon, but again reassuring if somewhat unpleasant to experience!
November marked the 10th anniversary of Rob’s surgery to remove his cancer. After he recovered we did a fundraiser where he shaved his head. This time he decided to do the opposite and grow a beard for a month, shaving it off on the day he had the surgery 10 years ago
Emily had her 9th birthday in February, I can’t believe it and now we are making plans for her 10th! This year she had a photo shoot party in her bedroom with some friends. We got hundreds of great pictures, just a few family and edited ones here.
Rob’s birthday is also in February and he enjoyed a couple of experience days beer making and clay pigeon shooting.
Rob finally started his new job in February after 6 months of red tape, so ridiculous as the job is in the same place.
For my Mum’s birthday we managed to get Mum and Dad to our house for them to see the loft conversion, they have not been for 5 years due to my Dad’s Parkinson’s. He managed very well and it was nice day so they could see the view and Emily took her Grandma out for a walk.
In May Emily went on a school residential for two nights. Rob and I took the opportunity to get a couple of nights away ourselves and had a peaceful trip to Haworth. The only downside was that our room was at the top of two flights of stairs, so rather a struggle. The advantage of being high up was it was quiet and there was a good view. We are now waiting for her next residential trip next November. Sadly her pet hamster, which had been a birthday present, died whilst she was away, but it had been expected and we had prepared her for it. We new have a new very healthy and active hamster.
Rob and I celebrated our 15th wedding anniversary in June. I am still waiting for my crystal!
Our main holiday this year was in Devon at the Manor House craft and activity hotel. We did lots of different activities, well Rob and Emily did I mostly watched. We travelled by train, which made it easier on Rob, and the assistance we got at the stations worked well. We only had one day away from the hotel when we met up with family who live in Devon and who we haven’t seen since our wedding, so of course they have never met Emily.
Unfortunately whilst we were away my Dad fell on the stairs and took my Mum down with him, so they both ended up in A&E. My Dad was admitted for 36 hours, but seemed none the worse for it. My Mum broke her wrist and was in plaster for 5 weeks and is still recovering.
Also during the school holidays Emily and I had a weekend Elephant hunting. Sheffield had 58 large elephants and 72 smaller ones around the city to raise money for the Children’s hopsital, called Herd of Sheffield. Each one is 1.6m high and made of fibre glass and then decorated in an amazing variety of themes and colours. We stayed in a hotel in the city centre, dropped off by Rob and then I used my mobilty scooter to go round and Emily must have walked miles as you cannot take mobilty scooters on public transport even the supertram! Emily has great fun and never complained about the walking and it is very unusual for me and her to get to do something together. It was nice to wander around Sheffield, think I now my way around better than in Leeds as we don’t go into Leeds very much.
We didn’t see all of the Elephants, Emily saw the most as she went several times with different people. There was also a goodbye event where all the large Elephants were gathered at Meadowhall and we got tickets for that, it was so cold and wet, but we survived even though we had to go inside and buy some new clothes and get a hot drink! After the event the elephants were auctioned off and raised £410,000. Rob is related to the auctioneer, but we couldn’t afford tickets for the sale and I don’t think I could have trusted Emily not to put in a bid! she still knows the names of all the large ones and what colours they are. We followed the auction online, amazed at the prices they reached.
We have hundreds of Elephant photos I will share a few here;
My parents celebrated their 50th wedding anniversary in September, we had a vintage tea party at their house, which was lovely and my Dad was having a good phase so was able to appreciate it. My Mum had her plaster removed a couple of days before.
During the year with help from Rob and a friend I started up my online shop again and merged my blog into the site. Unfortunately I do get carried away and feel I have to be really productive either on the craft side or the blog side and end making myself very ill and then losing enthusiasm and it all becomes a bit of a vicious circle.
Emily is now in year 5 at school and enjoys it most of the time, they do some amazing things, nothing like the school days I remember. She also still enjoys her out of school activities including gymnastics and sewing. She shows everyone we see that she can do the splits. She has recently made her own advent calendar and a cape at sewing class. She has been inspired by Bake Off and frequently asks to bake. I get sent out of the kitchen for her to do the “Technical Round” while she gives a running commentary of what she is doing and shouts me back to deal with problems, which seem to happen every 2 minutes!
A few weeks ago Rob’s Mum had a hip replacement and seems to be recovering well so hopefully she will be more mobile in the new year.
We had our usual photos taken at the weekend, here are a few nice ones
We have a few events to look forward to next year, with Rob’s 40th birthday in February, a trip to Euro Disney in April and a new niece or nephew due in June.
Hope that you all have a lovely Christmas and all the best for 2017.
One week to go
A week today I will be back on Facebook following Give it Uptober! Not sure if I have missed it or not. I miss the connections with people, but not all the falling out.
I am sad that I haven’t been able to sell any of my cards to support IiME, but not getting many hits on my site at the moment, that may be a down side of not being on Facebook, but also those who do visit perhaps don’t like what they see, sadly the photos don’t do justice to the cards. I think another problem with cards is so many people make them, I think the prices probably put people off too, but it only covers cost of materials and postage, I never make any profit. Anyway it doesn’t matter it was just an idea to try and raise a bit more money for IiME.
I was hoping that not being on Facebook would mean I spent less time online and was able to feel a bit better, but sadly that has not been the case. I have even been on Twitter, ooops something else to get addicted to and then upset by, don’t think I will ever learn. I haven’t got a clue what I am doing on Twitter, I might become the next Ed Balls!!! Speaking of which anyone understand how he keeps getting voted to stay on Strictly?!
With it being half term this week I might be in bed all next week, it’s hard work even though Emily is now 9. If I make it out of my bed I hope to add some more items to my shop, I have plenty of ideas and several half made items, but I do have a special birthday card to finish first or I will have to change it to a belated card!! I also have the small matter of a Halloween party to organise, what do I let myself in for, I don’t even like Halloween! Again I have lots of ideas, but not sure how many of them will make it to the party!
Where did the last 10 years go?
This time 10 years ago, I was pregnant and my husband was very ill, with what turned out to be cancer. I won’t bore you with the details of what happened then, but he is having a bit of a celebration!! Here is what he says;
“The 17th November will mark 10 years since a Neurosurgeon removed my pituitary gland (via my nostril – yes The 17th November will mark 10 years since a Neurosurgeon removed my pituitary gland (via my nostril – yes really!). Aside from reducing my BMI by 0.0002, removing it also saved my life.
A year later, I organised a fundraiser and shaved my head (warning – embarrassing photo: https://www.justgiving.com/fundraising/robshaves4cancer) which, thanks to many of you, raised over £3,000 for Cancer Research UK.
To mark 10 years passing, rather than shaving I’m going to do the opposite: not shave – between now and 17th November. I’m not asking for donations (but of course you can if you want) but instead ask if you could spend a few minutes thinking about other who have not been as lucky as me. Not just those no longer with us, but those, like my wife Jane, who live with poor health every day.
Thank you all for your support, in 2006, and since.”
In some ways it’s been a long 10 years, in others it has flown by and we now have a daughter who is nearly 10! Looking forward to the birth of Emily kept us going through those dark days and she has kept us on our toes ever since.
So long, farewell, auf wiedersehen, goodbye
In the words of the song from Sound of music;
“Regretfully they tell us but firmly they compel us
To say goodbye to you.
So long, farewell,auf wiedersehen, good night.
I hate to go and leave this pretty sight.
So long, farewell auf wiedersehen, adieu
Adieu, adieu, to yieu and yieu and yieu.”
(Read more: The Sound Of Music – So Long, Farewell (the Children) Lyrics | MetroLyrics)
We went to say goodbye to the Herd of Sheffield yesterday. The torrential rain did not deter us and we got a picture of each very wet Elephant with water running down my sleeves whilst taking photos and rain soaking through my trainers which I didn’t know were not water proof! Each Elephant was parked in a parking space in Meadowhall car park for paying visitors to bid farewell and despite the weather the turn out was good and we were glad to be near the front of the queue for our time slot. The rain was so heavy at one point the drops were taking photos on my phone and then my phone stopped working!
So here we go 58 wet Elephants and Emily!
The eagle eyed amongst you may have noticed there are more than 58 images, that is because some elephants are different on each side. Apologies for the layout of the images, but we swapped cameras part way through and I am too tired and brainfogged to sort them out and improve the layout.
After going inside to find food and some dry clothes we came out to find the sun was out and we got our final view of the Elephants from the top of the car park
The Elephants will be auctioned on Thursday, sadly I can’t afford one or have room for one, but I hope they all find good homes and raise lots of money.
I have made some cards inspired by the Elephants and they are on sale in my website shop, with proceeds going the the Herd of Sheffield Children’s hospital charity.
Check them out in my shop
Sadly the photos don’t do them justice, they are really cute and I will try to take some better photos, but right now I am all Elephanted out!
“So long, farewell, auf wiedersehen, goodbye
Goodbye, goodbye, goodbye”
Read more: The Sound Of Music – So Long, Farewell (the Children) Lyrics | MetroLyrics
Give It Uptober
This month I am supporting Give it Uptober to raise money for Invest in ME who fund research into ME. It is basically a group of ME sufferers from Facebook who have organised the event, the idea being that you give up a treat for October and donate money you save to the event. People have given up a range of things eg chocolate, alcohol, but as I already have a limited diet and don’t have anything I would consider a luxury, I have given up Facebook. A few other have joined me.
It might appear that I am making some posts on Facebook, but I am not it is ones that are done automatically such as, likes on Pinterest or updates on Goodreads.
I have a love hate relationship with Facebook and always want to use it less, so a whole month without is quite a sacrifice. You may wonder how it will save me money, in literal terms it won’t really, but I won’t be tempted by people selling things or by the advert at the side of the page or by recommendations people make. I am also hoping that from a selfish point of view that it will help me to feel better about myself. Facebook encourages people to share what they are doing and posts tend to be either bragging about something or complaining about something and it is so easy to get drawn into other things. It makes me feel useless as I can’t do many of the things that others do, or I get drawn into someones problems and worry about them.
I admit I am nosey and like to know what people are up to, but it’s not good for me and I end up feeling really down and upset for my family as I am not able to lead a normal life, or bad because I don’t work and we can’t afford things that others can. I am not a sociable person as I am very shy and don’t really speak to people in person, partly because of being shy and also because I can’t hear and it is exhausting, so being able to talk online is easier. Sadly it seems most people now only communicate on Facebook and relationships with people are very superficial. Sometimes you also find out things you would be better not knowing like get togethers you weren’t invited to or what other people’s kids have got, or what people think of people who are ill.
I am sure that people won’t miss my status updates that usually say how ill I feel or something equally miserable. I do miss being able to share funny things and photos, but after speaking to Emily last night about a talk they had at school about Facebook I did realise that some things I post I probably shouldn’t.
I won’t miss being told off for things I have said or having people disagree with something I say. I am very focused on my past and all the things that have gone wrong so being friends with people from the past reinforces that somewhat, but I also hate losing touch with people. It’s also difficult seeing what others have achieved and I feel left behind and useless.
On a more positive note there are many communities on Facebook where like minded people can chat and share ideas and support each other. I am part of several ME groups and have made some good friends through these groups, most of whom I have never met. I was part of some craft groups, but it started to get me down as I felt my makes weren’t good enough or that I was not productive enough. You do need to pick and choose what you take part in and decide what exactly you want from it.
I am hoping that once I have survived the month without Facebook I will be less addicted to it and spend less time on it as I know it is not good use of my limited time and energy and not a good example to Emily. But I also know that I gave it up last year and then easily slipped back into old habits. if you see me on Facebook after October feel free to tell me to go and do something more important or better for me.
During October money from any sales from my shop will be donated to the Give it uptober fund. Give it uptober is not to be confused by Stoptober which is an NHS campaign and Gosober a Macmillan campaign, although they are all good causes.
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