Tuesday, July 22, 2014

Craft likes

Just a few likes here before I disappear into the school holidays.

Stitching cards have added some great new cards

How cute are they all?  I want to buy and stitch them all, I wish......

Just before I go, look at these sand chairs, a wheelchair for the beach, normal wheelchairs sink into the sand, I would so love to be able find one, but its along way to Cornwall, although its somewhere I would love to visit, used to go as a child, but with only Rob able to drive and Emily hates being in the car for long and me who finds travelling hard work and uncomfortable don't think we will be going any time soon.

Monday, July 21, 2014

Think it will be goodbye for a while

School holidays start on Wednesday so I am not going to be up to posting much unless Emily is occupying herself and even then she calls on me every few minutes so its hard to focus on anything. I also have activities to take her to and accompany her on as well as a family holiday, I am exhausted just thinking about it and worried about how I am going to cope without my regular rests.  I feel that I need to spend time with Emily and don't want to just send her off to other people or childcare as she behaves badly when she comes back and I feel that I don't get a lot of quality time with her as it is.  Any time we do spend together is on her terms and is not always suitable.  Or if I am feeling ok to do something she would rather play outside with friends.  If I am doing something she wants my constant attention so its hard and we get lots of frayed tempers and tantrums and not just from Emily!  We have quite a lot of fixed activities to do so I need to be able to do those, but makes it hard to have fun time as I am in my wheelchair or just observing, but its still not restful.  People are happy to take Emily out or play with her for a while, but I get upset as those are the things I want to do, not the chasing her round getting her ready or dealing with the tantrums when she gets back.  If we do do something, I am worn out by the getting ready and then can't do much of the fun.  Emily says I don't care and don't want to do things with her, which hurts, but to her that is what it looks like.  Its difficult to know how to organise and prioritise when everything is such an effort and so difficult to know what is the best for Emily.

Emily is very unsettled at the moment, with family bereavements and teacher changes, teasing and falling out with friends, its hard to know how to deal with these things as they only normally come to light when she has been told off several times for being naughty or when she refuses to go to bed, so she gets disciplined instead of help.

The last few weeks have been so hectic I have had no time to relax and prepare myself.  Rob's grandma died on Friday so we now have another funeral to prepare for and attend and family to support, the emotional is as difficult as physical.  The funeral will be at the same place as my grandma's and probably the same location afterwards too, so it will be difficult to deal with coming so close after, only a month between the services!  Rob and Emily went to Sheffield on Saturday to support his family, but I was not well enough to go.  I felt very bad about it especially as we have spent so much time with my family.

One of the reasons I was so worn out was that I had a crazy day on Friday, with my audiologist here at 7am to bring my new hearing aid mould before he went on his holiday, so grateful to him, but meant a busier start to the day.  Emily had her school trip to Fairburn Ings so had pack up to prepare.  She had a great time pond dipping and bird watching and said they managed to be quiet, I must speak to the teacher see how she managed that one!  I really wanted to go to my quilting class as missed last month and will miss next month, but it was very last minute that I actually made it and I did feel quite ill after, but I got most of the sashing sewed on.  Just one more strip to cut for the top.

On the rest of the craft front it will be a quiet few weeks, lots to do, but no time or energy for it.  I made bracelets for the teachers which I forgot to photograph in my haste.  I have stitched a card for a friends birthday which I need to get made up into a card and get on with one for my mother in law, both their birthdays are in August and I am not organised enough.  Everything else will have to wait.  By the time I recover from the school holidays it will be time to get ready for Christmas, what a scary thought.

I keep getting requests for Linked In, so reactiviated my account, not really sure why as it is a business thing really, but this is me

Well I must go and get some rest now, its the last one I will get for a while as the children are putting on a show at school tomorrow afternoon.

I do hope to be able to post some bits during holidays, but who knows what the next few weeks will be like.

Monday, July 14, 2014

Mixed feelings, still busy and still exhausted pt1

I am sitting here not sure what to do, I am tired and dizzy, but can't do nothing as restless too.  It continues to be a busy time and is difficult to manage everything and the ME.  It makes me feel a bit of a fraud sometimes as there is so much to do and I have to do it, no matter how I feel, but then I look as if I am ok and people don't see the effort and the consequences.

We went away for the weekend, our 6th consecutive weekend away from home, but this one was a trip away for us to Oxenhope to stay in a lodge on a farm.  As Rob was working and Emily at school the packing was left to me, I did not pack a lot as only going for weekend, but forgot to pack cold drinks and a flannel, so was in trouble for that and the little shop on the complex was closed.  If I was able I would have driven into town and got them, but I can't do that, so we had to do without until next day, no great hardship, but I was not allowed to forget my mistakes!  Why do people always want what is not there, even if there is an alternative!

The journey there took two hours instead of 55 minutes because of an accident on the M62 on Friday afternoon.  It was difficult sitting in the car all that time, but thankfully the weather was good and the views amazing.

We all arrived tired and hungry to find that our apartment was on first floor and we couldn't park outside.  Bonus of being upstairs was the views were great and people walking past could not see in as they could in ground floor.  It was a fairly small apartment with sitting/kitchen area, 2 bedrooms and bathroom, but fine for our needs for a weekend.

After arriving we went into Haworth to get something to eat, we chose Old White Lion as they cater for gluten free diets.  There were several gluten free options on the bar menu, but mainly fish, which I can't have or steaks which I don't like.  I chose a goats cheese salad, which could be made gluten free, which meant that the chesses was not breaded and the meal served with out bread and bruschetta (menu).  They had a good children's menu and plenty of eating space.  As with most of the things in Haworth accessibility was not easy with steps into each different area of the building.  There is also a restaurant which we did not try, but the menu looks good.

On Saturday we decided to visit Cliffe castle in Keighley. We before 10am, to find it didn't open until 11am, but it does give that information on the website.  We went into Keighley in search of a drink and shops to buy the items I forgot to pack.  Found the Airedale centre which was cheap to park and easy to access.  Being tired and in pain I got fed up of Rob and Emily fighting over who was pushing my wheelchair, they forget I am the one being pushed.  I get dizzy in the wheelchair if I am not moved smoothly.  All the noise, movement and looking at things gets quite overwhelming.  Trying to referee and listen to people gets very difficult and quickly zaps what little energy I have, but I have to push on which means I pay consequences later.

I have to break now as I feel very tired and sick and have to go out soon to see Emily's class play and show of their work.  Its a busy week so not sure when I will finish off this post so will publish this part for now.

Thursday, July 10, 2014

Interesting Finds today

On my facebook news feed today there were a few things that caught my eye.  Firstly an article about the benefit of crafting on mental health.  I had better find something to craft!! Sadly I have other jobs to do like making my breakfast cereal, so that I know it is gluten free and as sugar free as possible!  Also need to do an online shopping order or we will have no fresh food to eat next week! Then I have to go and watch Emily in a concert at school.  Then Rob is in London so late home.  That's me worn out just thinking about it.

Secondly a video from a man called Peter Gray talking about the decline of freedom to play and rise in mental health problems.  I have not watched the video yet, but as an ex playworker this appeals to me.  I often complain that children are not given enough chance to play and are bogged down with homework or restrictions on playing outside.  He has also written a book Free to learn which sounds very good and I am very tempted to buy it, especially with school holidays coming up and wondering how best to keep Emily happy for 6 weeks. I am still undecided about National Playday.  Last year I had a playday at home, which went ok, except for Emily having a huge tantrum and then Emily starting to get bullied by a neighbouring child.  I would like to do it again, but it requires a lot of effort and time and energy that I just don't have, but then having Emily at home on her own can be just as tiring.  Thinking of doing a smaller scale event, but not sure what yet. Can't make a decision let alone plan and host event :(

My final find was a picture

Maybe I should stick this inside all the cards I make!

Well that's it for today, need to drag myself off the chair and prop my eyes open and mix some cereal or I won't have any breakfast for tomorrow.

Wednesday, July 09, 2014

What to do?

I really don't know what to do with myself at the moment I am feeling very weak and tired, dizzy, sick, achy and my brain feels full of cotton wool so can't concentrate on things.  Spent a lot of yesterday sat in front of computer just looking at things, but not really doing anything, that's not really good for me as it makes me dizzy and tired, but I can't do nothing at all and I couldn't concentrate to do things I wanted to do like crafts or reading.  I was mainly looking at clothes and shoes thinking it would be nice to have something new for my holiday, but as we are staying in this country and will just wear jeans and tops all the time, there is not really much point.  I'd like a new pair of smart shoes too, but as I wear them so rarely its not worth the expense.

We had another crazy weekend with me travelling with Emily by train to Sheffield whilst Rob went to Chester field by car to see his grandma.  It was nice to have some one to one time with Emily, but very hard work walking further than I can really manage and being solely responsible for Emily.  Emily was very well behaved though and helped me as much as she could.  When I am in my wheelchair she gets very naughty as she feels left out and not cared for.  I would do it again for Emily's benefit, but not when there is so much else going on.

Saturday was a very busy day as we went to my Grandma's house to collect some more things.  it is probably the last time I will see the house as it has to be handed back to the council soon.  Its so sad seeing the house looking so bare and dividing her possessions up.  I had a dream last night, she was asking me where certain things had gone, I do hope she approves.  In September we are having a sale at Rothwell Baptist Church to sell off some of her books, CDs and DVDs and donating the money to her chosen charities the NSPCC and RNLI, so hope we can do her proud.  I feel so useless not really being able to physically help and being overwhelmed by all the stuff and people about, trying to get my head around what was going where and not even able to take the children out of the way and keep them entertained.  There is a park not far away, but I can't get there :-( or even round the corner to the shop.  I want to help, but end up being a liability.  We now have a room full of bags waiting to go onto a charity collection, boxes of books for the sale and much more stuff stored at my mums to be sorted and sent off to relevant places.  And a fridge freezer which Rob will have to go on his own to collect as we cannot all fit in car with it in and probably needs to be before we change car as the new car is smaller.

When we arrived back at my Mum's Robs dad arrived to tell us that Rob's grandma had got worse and we needed to prepare for the worst.  We are just wondering how many more things can happen.  I know you can't stop people being ill or old or having accidents, be we don't seem to have chance to recover from one before the next thing comes along.  Amazingly she improved a bit on Sunday and is still with us, but not well enough to have the operation to repair her hip, so her quality of life is poor.  We just have to wait and see how things go, but at 90 years old its unlikely to go well.

Later on Saturday I had an appointment with Peter Byrom who I get my hearing aids from to fit a temporary receiver to my right aid whilst a new mould and receiver are made to try and improve my hearing.  The temporary fitting is very uncomfortable to wear, it falls out and there is a lot of whistling and feedback on it, so I am hoping it won't be too long before the replacement can be done.  I also can't hear as well so its frustrating for me and those talking to me.  I have been putting of getting it done as I could not cope with all the things that have been going on as I was told it needed to be done 2 days before my grandma died and I did not want to be without the proper aid until after the funeral and when I was less stressed.  As it happens I am not really in a much better situation now.

We returned home on Saturday as the roads we use to leave Sheffield were going to be closed on Sunday for the Tour de France.  We were hoping for a peaceful day at home, but Emily was very stressed out and very demanding of our time and energy.  She did eventually calm down and go off to play with the children next door.  Rob and I actually managed to sit down and see the end of the Tour in Sheffield and the end of the Men's tennis final.

It was an amazing weekend for sport in the UK, with the Tour de France in Leeds and Sheffield, my 2 home towns, Wimbledon and British Grand Prix.  Only one UK winner with Lewis Hamilton, but think the UK proved itself an excellent sports venue.

On Monday I had my much needed physio with Julie at Fairways Physio.  My back and neck were very stiff and in knots and my hip had been twinging.  It was a relief to be less stiff, but due to the amount of work she had to do I am still quite sore and dizzy from neck work, I am hoping it will settle down a bit.  I have had to lay off the anti inflammatory pain killers as they are causing sore gums and nose bleeds.  I know if I stop them for a few days it will settle down, but means I only have co codamol for pain at the moment.

The pain a dizziness was not helped by sitting almost 2 hours watching Emily's sports day yesterday, but these things have to be done. The sports day for the older children in the afternoon got cancelled due to heavy rain. When I got home I was so exhausted did not know what to do with myself.  As ever Emily seemed to pick up on this and her behaviour was rather difficult and trying to keep calm and deal with it was a huge effort.  By the time Emily was eventually in bed I could not face anything else.  Rob was trying to speak to me, but I had no idea what he was saying and had to go to bed.  Once in bed of course I could not sleep and when I did eventually get some sleep I was dreaming as I always do when I am unsettled.  Most of my dreams are about regrets so go back to when I was nursing, 24 years ago now.

This morning was cleaning morning, my cleaner is far from quiet so I get no peace even if I shut myself away.  There is so much I want and need to be able to do, but feel like I am wading through treacle and have a head full of cotton wool.  I know I need to rest, but being unsettled makes it difficult.  I have to try for Emily's sake, she needs a Mum who can function and give her attention.  She is very attention seeking, but its because she feels we are always doing something else and don't give her our undivided attention, which much of the time is true and she cannot understand that we can't do what she wants every minute, this in itself is exhausting.  I read a blog article earlier about attention seeking and although it is about younger children much of it is true and I need to try harder.

I am off to try and get a peaceful rest before Emily gets home from school and hope that she is happier and more settled when she comes home so that we can at least keep calm and do something nice without her unreasonable requests to bounce on the trampoline or run about in the street, which she knows I can't do, but still pleads with me to do, its heartbreaking.

A final mention for a lovely craft project from Stitching cards a lovely wishing well.  I dare not buy it as I have so many still to do, but I do like it and the idea of Get Well or Wishing you Well!

Thursday, July 03, 2014

Useful tips for those living with someone with ME

When I was awake in the middle of the night I came across a blog post sharing tips for living with someone who had ME it just shows how little things that others might not even notice can affect those with ME and how a bit of thought can make life a little better.

I won a prize

Last week an X cut build a scene die dropped through my letter box, apparently it is from a Docrafts magazine competition.  Its the forest scene and consists of 6 pieces to make a scene with an owl or a deer.

 I have not seen or used these dies before, so will have fun playing when I have more time and energy.  There are several different scenes, the London one looks good, click link to see video on you tube.

The latest Docrafts magazine arrived this week, it is full of Christmas crafts!  I don't really do things for Christmas as I can't plan this far in advance, then I am too late to get things done.

I have just noticed some of the posts on my website are not displaying properly, not sure why.

In a Whirl

Its been a crazy few weeks, following my Grandma's death, arranging the funeral and clearing her house and we have only been involved in a small part of it.  The funeral was on Monday, very emotional, but went smoothly and lots of family and friends joined us to say goodbye.  June has just passed in a blur and just when we thought we could relax a bit Rob's grandma had a fall and is now awaiting a hip replacement so we will now be visiting and supporting the other side of the family too.  Living 40 miles away from family makes it hard and we have to fit everything into the weekends as Rob has to work and Emily go to school.  I don't know how people manage that are further from their families. I got quite stressed about being unable to help more and being so far away. I ended up looking at houses to be nearer, but discovered we can't afford to move, or at least not to anywhere where we could be any use.  I hate feeling so useless and cut off.

I am just about managing to keep going, mainly running on adrenaline.  I do have times when I literally cannot do anything and have to go to bed, then get back to feeling able to manage although feeling quite ill, but I am used to that.  Adrenaline is a great pain killer, so I have actually had less pain, but am very stiff and fed up of feeling sick and dizzy and my concentration is non existent.  I am sleeping badly and feel cold most of the time, whilst everyone else is saying its too hot!!  I am having long term problems with my throat that started about February after a sinus infection and has not cleared up, I have a hospital appointment in 2 weeks, I am just hoping bits worth going and that I don't get fobbed off.  The other problem with adrenaline it's that it makes me restless, so although I am exhausted and need to rest I can't sit still. If I try to lie down and rest my heart is pounding. My tinnitus is really bad, so loud and endless, making rest and sleep so difficult, it drives me mad and means even at quieter times I get no peace.

I think craft projects will be on hold until after the school holidays now, although I do hope to get some cards made for August birthdays.  There are quilting classes in July and August, but I am not sure I can make them, with end of term activities followed by 6 weeks of school holidays to get through.

Emily has her first Willows session tomorrow.  I do hope it helps her, she has been very unsettled.  I need to be able to spend some quality time with her, not time when I am doing something else or barely functioning.

I am amazed at the number of views of Michael's story, it has 184 views, my normal view rate is about 20.  Its a very good piece and demonstrates very well the difficulties for carers as well as sufferers, especially those with severe ME. Michael also does a lot of work to get recognition of ME and promote research.  He is involved with several facebook pages Sheffield MEInvest in MEME Alliance and Honesty about ME

I saw this on facebook, so true

And this, but easier said than done