Baby Card, Christmas and Snow

I made this simple pattern for a friend who became a grandma just before Christmas

Sorry about the photo quality.

Christmas was exhausting as expected and I am now home and feeling rotten and not able to do things with Emily which is disappointing :-(

Here are a few pictures from our Christmas, we were in Sheffield where as you may have seen on the news they had bad snow, depends what you mean by bad, but there was 4 to 6 inches, the kids loved it and it was very pretty. There is nothing in Leeds.

Pain Diary 19/12 to 25/12 update 23/12/

20/12 Had pain during the night and very little sleep.  Pain is very mild today, but I am running on adrenaline which is a good pain killer.  Just waiting for the bad pain to hit!

21/12  Awoke in a lot of pain, but slept longer than usual!  Pain been variable during day, normal for me.  Busy day lots of adrenaline and pushing my limits, I know it will hurt a lot soon.

22/12 Pain during the night, but managed some sleep.  Stiff and achy on getting up, fingers crossed I don't get too much pay back for yesterday.  Quite a bit of pain during evening and pain when trying to settle in bed.

23/12 Quite a lot of pain during night didn't sleep well.  Very stiff and achy on getting up.

James Martin made me cry.

I have been watching a new James Martin series Operation Meet the Street.  Each day James goes with a celebrity to the street where they grew up, to see what it is like now and to meet people who are lonely and isolated for whatever reason.  Today the main people featured were isolated by the illnesses ME and Fibromyalgia, as I have both it really hit home with me.  James was obviously moved by their struggles and introduced them to people who could help.  Today's episode (no 4) is available on iplayer for 29 days.

The aim of the show is to get the community talking and supporting each other with emphasis on socialising.  I find socialising very difficult, I also have hearing problems so get very anxious and worry about being able to hear, in a noisy environment I cannot hear and join in conversation and the fatigue makes following things and joining in very difficult.  I do try to go to some things, but usually sit on the sidelines and appear to be ignorant.

I am in the house alone all day, except for my PA and hairdresser who come in to do essential tasks for me, this is the only real contact I have and is out of necessity rather than desire.

I have a 7 year old daughter who I have to 'care' for and that uses most of my energy, getting her up and ready for school, getting her to school and back and just being with her.  She doesn't actually need much from me, but is still exhausting.  Any social events I do go to are usually child, family centred, so can be very noisy and hectic.  I need someone to take me to events, usually my husband as I can't drive far and either need my wheelchair or to be able to park close to the event I am attending.  On Tuesday there was a carol concert in the playground which I couldn't go to as the cold would have been too painful for me, my husband had to take time off work to go, but I felt bad for missing it and guilty that my husband had to take time off to go when I was sitting at home.  Tonight my daughters school is taking part in a carol concert in the local church, as my husband is out with work I have had to call on a friend to take us parking nearby is difficult so I need dropping outside whilst she parks further away.  After the concert I will be exhausted and will have to get my daughter to bed and then go to bed myself and won't see my husband at all.

Being a mum means that most of the things I go to are with or for my daughter and do very little for myself and what I can do with my daughter is also very limited.  I was upset last night as Emily went to her Willows Christmas party, she didn't really enjoy it as there was no one she knew and her key worker wasn't there.  I felt bad as I have to let her go and be picked up by someone neither of us know and be in a group of unknown people, I wouldn't want to do it.  Willows is an organisation for Children who have a sick parent and organises events for them to meet as they are in similar situations, but the kids don't really get that I don't think.  For the children who have more seriously ill parent it maybe the only social events they get, but I try to ensure my illness does not limit Emily too much.

One of my main worries as a Mum is that Emily doesn't get enough exercise, I take her to school and have to park in car park so she doesn't walk far and we don't go out walking or do any form of exercise as a family.  When I was well I walked everywhere and I am sure I would with Emily too.  Emily goes to a gymnastics class once a week, but that is all, even though she is always busy with something.  She runs and around and jumps and shouts in the house which is difficult for me to cope with, but she needs an outlet and I have to try not to tell her off, but its not always easy, there are other times when I wish I could join in her madness or her song and dance routines.  She has a trampoline and bike etc outside, but its the wrong time of year now and even in the warmer weather I find it difficult being outside unless it is very warm and she wants me to watch her all the time.

Being socially isolated has an affect on Emily's social skills and she finds it hard having people in the house and using her things, she often gets very upset when she has a friend to play.  Emily is an only one due to fertility problems so she feels the isolation too and its difficult for us both when she wants someone to play with, but we have to play something that I can manage.  I feel I should make more effort to have her friends around, but can't deal with the tantrums and preparing food, even if it is only fish fingers and chips!

I do very little for myself.  I try to go to a Quilting group once a month, but in reality probably only go every other month and when I am there I am not able to join in the chat as the sewing requires all my concentration and energy.  Recently my husband had to start taking time off to take me and help with some of the trickier parts of the class.  In the new year the class with be closer to home, but will still be a struggle but I make myself go, but then it means I need Rob to finish work early to collect Emily from school if he has not already had the day off, so it makes doing something for me feel selfish to them.

Recently I attended a 5 ways to Wellbeing group, this was held once a week nearby, but again I only made it to about half of them.  It was a nice friendly group and covered issues such as isolation, but I found it hard work to attend and was not able to join in as much as I would have liked.  We are trying to keep in touch as a group on facebook, but its hard, especially at this time of year when everyone is so busy.

This time of year is particularly isolating as 'normal' people are socialising more and going out shopping, attending seasonal events.  Being stuck in the house makes you feel as though you are missing out, but also joining in would be too difficult.  I feel I am missing out on the build up to Christmas, whilst being exhausted by preparations such as online shopping, present wrapping and card writing.  Not being able to work also compounds the isolation and the feeling of missing out or being part of a group.  Yesterday Emily had her school dinner at school and tonight Rob is out for his work Christmas do, so I feel more on my own than normal and don't get any special meals.  We could go out for a nice meal, but it would be very tiring and also very busy and noisy so its easier to miss out, but it still hurts.  I also have many food intolerances so eating out is a bit of a nightmare and again it just becomes easier not to. Even having a special meal in is difficult as I am dependant on Rob to cook, so its usually something he can do quickly when he comes home or something like jacket potatoes than I can put into the oven, so along with my food intolerances our menu is rather limited.  Then if I say I am missing out others feel bad for doing things and I don't want them to feel that either, I don't begrudge anyone doing the things I can't do, just envy them and miss it.

and another

Pattern from Stitching Cards, buttons Hemline, backing paper from Docrafts Creativity Magazine.

This is for my daughter so I get to keep it :-)

That will be the last one this year.  Then need to get ready for Emily and Rob's birthdays.  I want to do a Frozen themed card for Emily, but need to make own pattern so might be quite tricky as I need to find a simple image first and then get my mushy brain in gear!

Cards

Pattern a337 from Ann's Paper Art

I stitched the 0 upside down so it looks like its falling over, whoops, cant change it hope the recipient doesn't mind.

I got this lovely card from a friend

Need to crack on with card I am making for Emily for Christmas, but so lacking in energy and feeling rubbish :-(

Shocking read

I have just finished reading A Mother's Ordeal about the one child policy in China and one person's true experience.  It is a shocking read, but gripping all the same.  I first read the book just over 15 years ago and unlike most books it stuck in my mind.  Not even being able to remember what it was called as it was a library book I searched for it and found a second hand copy online and bought it.  So I have just finished reading it again, it is still shocking and the time period of the book is during my childhood, early adult years, so not back in the dark ages as it seems.  Being a mother myself now means I can understand the emotions more, especially as I too have a different sort of imposed one child.

Written by Steven Mosher the true story of Chi An is written from her perspective.  I am no good at writing book reviews but found a couple of links to other reviews here and here.  I wish I knew what happened after the end of the book as the story was not over and I assume that Chi An and her family are still alive.

Christmas Pictures

We had our pictures taken with White Box Photography today.  It was great fun as ever and got some brilliant photos.  Thanks to AJ and crew for making us so welcome as usual.

Physio Pain Diary 12/12 to 18/12 Update 18/12

One of the reasons I started my blog was to keep track of symptoms and treatments, but have not done this so far.  My Physio always asks me how I did after the last treatment, but as I only go once a month I can never remember, so I am hoping to keep a better track here and be able to tell her next time.

Treatment 12/12.  Pain after treatment not too bad, got more painful in evening and was out, but mainly sitting down.  Painkillers whilst out didn't help, but more painkillers at home and pain eased, didn't need painkillers at bed time.  Pain overnight not too bad.

13/12 Pain in morning quite bad in neck and back, tender from Physio, headache settled with painkillers, pain not settled.  Warm bath, pain eased whilst in bath, but came straight back.  Quite dizzy.  Stiffness not an issue and hip is fine.  Late morning pain eased after painkillers.

Managed to sit in cinema without too much pain.  Got achy late afternoon, but not too bad, head achy and dizzy, but looks like physio does help a bit and certainly not as stiff, will see how it is tonight.

14/12 Pain not too bad during night and not stiff on waking.  Still head achy that seems to happen after having the physio on my neck, see how the rest of day the goes.  Pain not bad at all today.  Worst of it was in my knees and hips when out in the cold.

15/12 Pain not bad over night and only a bit of stiffness in neck this morning.  Wish my other symptoms felt better too, but any bit helps, just got to remember not to do too much when pain is easier, it won't last long.  Feeling generally achy and yuck, but not needed painkillers yet.

16/12 Pain and stiffness not too bad over night.  Pain in ribs that I had last night seems to have gone.  need to be sensible today and not go to Carols in playground at school as the cold is too painful, but I feel bad not going :-( Getting quite achy late morning, but cleaning pets and wrapping presents not the best things to do.  Also feel like I am getting a cold so that won't help.  Horrid pain this afternoon, feeling very dizzy and shivery too, just what I need!

17/12 pain got quite bad last night and felt really unwell.  Not too bad this morning but neck quite stiff and sore, still feeling really unwell.

18/12 Pain back to normal levels of achy, sore, stiff.  I told physio that the treatment helped for about a week, looks like I was right.  Not has a really painful day in the week since physio, but with the run up to Christmas I am sure there will be many.  I am sure the physio helps and that if I didn't go I would be a lot worse all the time, I am always more than ready for monthly treatment.  As with everything its a fine balance as I am sure that going more often would become counter productive.  This time I did react quite well to treatment, nut at other times it can leave me in a lot of pain afterwards before it calms down a bit.  There is no obvious reason for this as the treatment is always the same!  Sadly even if going more often would be helpful it is unaffordable and a treat to go once a month.  Roll on next month I will be more than ready.

Annual Update

We have decided not to write a Christmas 'newsletter' to put in with cards this year: we know that many people don't like it and this way we will save paper, ink and effort!

Jane started this blog in 2013 so we thought we would put an annual update here for those who want to know what we have been doing this year and to share some pictures.  Welcome if you have got a card from us and found you way here and hello to anyone else reading.

As usual the year begins with January, this was spent recovering from Christmas and preparing for Emily's 7th birthday party.

February began with a family meal in Sheffield for Emily and Rob's birthday which Jane had to miss as we had all been unwell with bad colds.  Emily's party was on Rob's birthday, she had a pamper party, not quite Rob's thing, but there was plenty of cake!

The theme for the party was rainbows and the girls had their hair and nails done and faces painted.

We are now making plans for her 8th birthday!  Where does the time go to?

In April we had a weekend in Scarborough.

As the weather began to improve we decided to take down our old summer house and replace it with a trampoline for Emily to burn off her energy, it got a lot of use through the summer and not just from Emily the neighbours kids seem to like it too!

The summer was not a good time for us.  Jane's grandma Olive passed away in June after having an angina attack, she was taken to hospital as initially was thought to be ok, but deteriorated and died 2 days later.  We were able to spend much of her last day with her, but she died just after we left, some of the family were with her so we take comfort that she was not alone.  She was 94 and still living alone in spite of being almost blind and with poor mobility.  For the funeral we included rainbows again; Emily wrote a poem 

Rainbow by Emily Shaw (great granddaughter, age 7)

Rain and sun together makes a rainbow

Always bright and cheerful

It is colourful and pretty

Now when it is fading it goes lighter

By now I think rainbows are brilliant

Over to you! What do you think?

Wow, now I think the rainbow has gone now.

and Jane stitched the rainbow picture above again, without the number, for the service sheet.  We left Olive in the garden of remembrance with her dear husband Frank on their 75th wedding anniversary.

The day after Olive's funeral Rob's grandma Margery had a fall at her nursing home and broke her hip, she was admitted to hospital, but was not well enough for surgery, she died 2 weeks later. Margery was in a nursing home for the last year of her life due to Alzheimer's disease.  She was happy there and we celebrated her 90th birthday with her there in November 2013.

Between funerals and sorting out family affairs we managed a holiday in the Lakes in a caravan.  We did have some issues with Emily's behaviour she was very unsettled with it being such a difficult time and did not really enjoy being away from home, but we survived and enjoyed a boat trip on Lake Windermere and a visit to Beatrix Potter's house and the Beatrix Potter visitor centre.  Emily enjoyed the facilities on the site and we had good weather.

We also managed a trip to London during the school holidays.  Emily has never been before so was rather overwhelmed by some of it, but she loved the London Eye and we had a hotel next to Tower Bridge.  The thing she enjoyed the most was a trip on the underground!!  Thankfully much of the underground is now wheelchair accessible, but it meant she didn't get to go on one of the long escalators, we went down in 3 lifts.  We couldn't get near Buckingham Palace as it was changing of the guard when we got there.  We spent the final day at the Tower of London and saw the amazing display of poppies in its early days and thanks to arriving early got in to see the crown jewels without having to queue.  We ordered our own poppy and it arrived last week.

Emily moved into year 3 in September (that's J1 for those of you not familiar with the numbering they have now).  She is doing well and has been doing some interesting projects.  They got to go on a trip to a nearby by Stately Home as WWII evacuees 

Emily's school went into special measures in 2013 and there have been a lot of changes in school, they are on the third headteacher and most of the staff left.  School converted to an academy earlier in the year and they are making good progress.  It has been difficult for the children, but we decided that moving schools would be more disruptive, a few children did leave, but majority stayed.  Emily loves the teacher she has this year, she is newly qualified and has lots of fresh ideas.

In September we were excited to get a brand new car.  It is a Golf Estate, smaller than our last two cars now we don't need to carry a pushchair and my wheelchair, but we may need to travel lighter when we go away!  It is a Motability car which is a great scheme, but due to benefit changes coming in the next year or so Jane (and many others) will no longer qualify for Motability, but we hope to get the option to buy the car we have as we really like it.

Emily enjoys going to a gymnastics class and loves singing and dancing, like most little girls she is mad on Frozen.  We took her to the cinema on recently to see Paddington which we all enjoyed and hope to go and see the new Annie soon and Get Santa some of which was filmed in Rothwell.  Going to the cinema is a new thing for us as Emily has always been scared, but now she will sit and enjoy the film, although she does get bored with all the adverts and trailers before it begins and can't understand why she has to wait for the film.

Rob continues in the same job - there are frequent changes of job title and reshuffles - but basically its the same.  He has been there 15 years now, so is one of the old boys now.  It is now 8 years since he had cancer and annual checks show that everything is ok, he remains well on his medication regime.

Jane's health continues to be poor and she lives with daily limitations and frustrations, but tries to keep positive and knows there are others worse off.  When she has the time and energy she writes her blog about life with ME and craft projects.  The craft projects always take a long time, but she has almost finished a quilt and enjoys making stitched cards and button pictures.  She had planned to do other things, but life gets in the way and energy is very limited.

Next year we are planning a loft conversion; we are running out of space and it will mean Emily has her own space when she is older. She is planning the decor already, it has to be blue! Its a big undertaking for us and one we have talked about for years.  I am sure that it will take a long time to be finished and inhabitable and we have to clear out the rubbish first.

Well I think that is about it for this year.  

We wish you all a Merry Christmas and a Happy and Healthy New Year

With love from Jane, Rob and Emily.

Dear Santa

Dear Santa

I have been a good girl this year, well I have tried, not sure I always get it right.  I know that I often try too hard and make my ME worse and get my priorities wrong, but I am never sure what is the right thing to do or what is best for me and my family, but intentions are always good.

What I would really like for Christmas is some peace and quiet and the chance to have special times with my daughter who is growing up so fast instead of being so tired and ill all the time.  I would also be grateful for some good nights sleep if you happen to know where that can be bought.

Christmas is a difficult time for people with long term illness as it marks another year with no progress, another year older not able to fulfil your life as you would like.  I can't ask for a cure as no one knows what that is yet.  I would like a good dose of positivity if that is possible and the ability to find the good in the things I can do.

I do have many material things of my Christmas list, but they are things I would like and don't really need and I would happily forgo them all for the things mentioned above.

I don't want to sound ungrateful, but I also do lots of preparation and shopping and then you take the credit.

I hope that you will consider my requests favourably.

We will leave you refreshments and have some reindeer food too.

Please could you enter and leave quietly so you don't frighten my daughter who gets very worried about you coming in the house.  Please do not be offended we have the same issues with the tooth fairy and the Easter bunny!

Love
Jane

ME Fundraising appeal

ME research is massively underfunded and until the funding is available no one knows exactly what causes it and if there is any treatment.  It continues to be a greatly misunderstood illness and those of us with it become very isolated.  Please take time to read this, taken from Action for ME on facebook

M.E. is a horrible and debilitating neurological condition. Help us fund more research and together we can fight it.

Thanks to the generosity of people like you, we've been able to fund two further research projects in 2014. The first is a study into immune responses, especially against infections, amongst people with M.E. and the second project seeks to determine if people with M.E. have differences in their mitochondrial DNA that could make them more susceptible to contracting the illness or impede their recovery.

This vital research could lead to breakthroughs in the approach to the treatment of M.E. including innovative new drug treatments.

Despite the progress being made, there is still vast under investment in M.E. research.

Professor Holgate, Chair of the UK CFS/M.E. Research Collaborative states, “There is hardly an organ of the body not affected by this disease, and yet there is still an enormous lack of knowledge, disagreement over diagnosis, and perceptions of M.E. vary enormously.” We agree, and that’s why we are seeking your help to fund further M.E. research studies in 2015. If we are successful in raising the funds with this appeal, we can give the green light to new projects with the potential to significantly improve our knowledge and understanding of M.E.

We receive almost no Government funding for our work and are therefore totally reliant on the generosity of people like you if we are to continue investing in new projects with the potential to significantly improve our knowledge and understanding of M.E. Please donate today to help us fund new research projects in 2015.

By making a donation of £20, or however much you can afford, you will be helping us achieve the breakthroughs needed to beat M.E. Thank you for your support.

Supporting the appeal couldn’t be easier. You can donate by:

- visiting our research appeal page on JustGiving athttps://www.justgiving.com/meresearchbreakthroughs/

- Texting MERB99 plus £3, £5 or £10 to 70070 (texts to this number are free)

- calling the Action for M.E. office on 0117 927 9551

- posting donations to Freepost RTJR-TJLZ-CHLJ, Research Appeal, Action for M.E., 42 Temple Street, Keynsham BS31 1EH.

Dear December

Please don't take this the wrong way, but I don't like you.  Once you roll in all hell breaks lose in the mad race to Christmas.  One day of the year creates so much stress and chaos.

I have been madly trying to shop since September in order to avoid the last minute rush, I have done pretty well, but still have cards to write and presents to wrap and then a big guy in a red suit takes all the credit, whilst I dose myself up on painkillers and put a smile on my face.  Next year the big guy can do his own shopping.  Typical man letting someone else do all the work then taking the credit!  As my daughter keep telling me, no one sees the real Santa, I reckon he doesn't even do all this flying round the world stuff, probably gets his wife to do it!  But we can't take the risk can we?!

To be fair all the months from September as geared up to Christmas, I am glad I don't go in shops the tacky music and mountains of gifts would do my head in.  I am sick of TV adverts for kids toys and perfume, both of which seem very overpriced.

December you become a mad rush of how many parties you can fit in and how many pantos and carol services you can attend, or in my case I get everyone else ready for the parties and fun whilst I stay at home feeling like Scrooge.

Please tell me how did we get from Christ's birthday on December 25th a nice peaceful celebration to all this manic present buying, parties, and total madness?  I am sure that Christ would not be impressed and he doesn't get to go to the parties either!

What happened to the advent calenders with little pictures in that counted down to Christmas day, now they have to contain chocolate or gifts or money, so that's 24 gifts before Christmas day even arrives.

Going back to the big guy in the red suit, where did he come from?  Many kids don't even like him.  My daughter is terrified at the thought of him being in the house and gets very anxious on Christmas eve and won't sleep in her own bed!  She makes us promise he won't go in the room.  Today she asked me how come he doesn't set the burglar alarm off when he comes in.  I said perhaps he knows the code, but she thinks its something to do with super powers, ok who am I to argue!

So this week we have already had a Christingle service which was very nice and much more traditional with songs and candles in church.  Next comes the school fair a manic event where we all go and buy back the stuff we donated!  Don't get me wrong I what to support the school and there is not much other way of doing it, but it seems a bit like a bring and buy sale!  Of course we do it for the kids and there is a lot of work put in by the organisers and kids.

Some people have got decorations up already and Christmas seems to get longer every year.  I can't cope with a tree planted in the corner and flashing lights, having to move the furniture around and untangling everything that was put away neat and tidy at the end of last Christmas!  Sorry decorations won't be up here for another 2 weeks.

Don't even start me on present buying the kids want everything under the sun and expect it even though they are not good as they promise to be so Santa comes.  They get so much stuff that they put it away and never get it out again.  Knowing what to buy for people is a nightmare and you always worry that you got it wrong or that its not good enough or not worth enough or compared to what they got from someone else.  You save all the receipts (whoops think I forgot this bit!) as somebody will want to change something.  You have to be grateful for the presents that you get and then hide many of them in the back of the cupboard because you don't want to admit you don't like it.  Thinking the spirit of giving and receiving is getting a bit missed and why are we giving and receiving presents when its someone else's birthday?!  I mean wouldn't you be a bit fed up if it were your birthday and you didn't get any presents but had to give them to others instead!  I can relate to this though as my birthday is also my wedding anniversary and I have to give presents to my husband, we never thought of that when choosing our wedding date!

I would quite happily skip you December and go straight to January, I think animals that hibernate have the right idea, but how do you hibernate with insomnia?

We all like the idea of a traditional Christmas with carols round the open fire and snow on the ground.  Not quite the same in front of an electric fire, even one with pretend flames and no chimney for the big guy in the red suit who now had other means of access, make sure you know what your kids think they are before you put your foot in it! Always portrayed on Christmas cards and soppy Christmas films.  You never see a Christmas cards with the kids having tantrums, murky grey weather and pots piled high.

Don't get me wrong there are some nice events, but just too many of them, I mean how many Christmas fairs can you go to, how many Santa's can you see.  Carol services are nice, but how do you fit them in.  Parties, sorry over rated, but maybe that's just because I don't get to go to any bah humbug.  The kids come back hyper on sweets and treats, the hubby comes back drunk and skint!

We start to panic in November about who you will spend Christmas day with, no one says what they really want and someone will be disappointed and everyone ends up agreeing to the things they don't want to do and spend the day worrying about the people you are not with and hoping they won't give you too much of a rough time when you do see them.

Well if I think you are bad, I guess I have to be glad I am not a turkey or a tree, December really is  not a good month for them!

You are of course the end of the year too, we realise all the things that we haven't managed this year or how we haven't changed a bit since last year.  We are all another year older and many people have left us, all these emotions conflict with the its December, Christmas you should be having fun, be happy.

Well I guess you are around for the next 30 days, so I had best make the most of it and try to be friends with you, but do forgive me if I get a bit fed up with you and call you names at times.  Please don't be upset when I say I will be glad to see the back of you, but then we get January, think I might be writing to him as well as he is not my best friend either, hope that makes you feel a bit better!

Happy December!

I leave you with one of those pictures used make us think nice thoughts and cons us into December madness every year.