Monday, June 29, 2015

I want to resign!

The other day having a conversation with Rob as I was upset that I rarely get to do things I want or enjoy doing cos I am too worn out form doing every day stuff and was saying that people who work full time and do all their own housework get more pleasurable things done than me. Rob said being ill was my job and it takes all my time and energy, I wasn't really sure what to make of that! He manages to work full time, to be out several nights a week and do things he wants to do as well as looking after me and Emily when needed. If this is my job it is the worse job in the world no job satisfaction, no reward (payment), no time off, no option to change jobs. Even if you are in a job you don't like at least you get paid and feel you are doing something and if things are really bad you can leave and find something else.
Last week a job advert landed on my Facebook feed:

"Communications and Campaigns Officer (Ref: CCO 2015)
14 hours p/w, location to be negotiated (office or homebased) £24,492 -£28,922 pro rata depending on qualifications and experience Additional London weighting available to candidates from London Play England are looking for someone to develop and implement a communications and campaigns strategy to support the Street Play project funded by the Department of Health. The post holder will work with colleagues in Playing Out and London Play to support a national campaign to promote street play to create the conditions and encourage more children to play out more often. The successful candidate will have experience of managing website content and ability to utilise social media and new technologies to increase reach of key messages, disseminate information and build partnerships.
This is a temporary post until 31 March 2016.  Play England welcomes applications from self-employed applicants and is also willing to consider secondments. Closing date: Monday 6 July 2015 Interviews: Thursday 16 July 2015"
I would love to do it and to anyone else it sounds a great job 14 hours a week, for me that is about 10 hours too many!! I even know the person who is advertising the job! But who would give me the job even if I was well enough having not worked for 15 years and being very out of date.

I came on the PC to post pictures of the things I have made in June, just to prove I actually did something and found that in my haste I have not got pictures of many of the things, so annoying as they were good too, even if I do say so myself, not something I do very often.
Any here are the ones I do have

Pattern from  Embroidery on Paper for Every Occasion Perfect Paperback – Sep 2004

by Joke De Vette (Author), Adriaan De Vette (Author)

Pattern from Dee Craft

Pattern from Ann's Paper Art

I also made two hot air balloon cards with patterns from Dee Craft and this car pattern in green and added a roof to it.  So I did do something, but it doesn't feel much.  I have a couple of orders for cards which I need to get on with as the longer I leave it the more pressure I will be under and only have myself to blame.

I am really down at the moment due to limitations, decisions that I have to make and how it affects my family.  The mindfulness has gone out the window as it's so hard to live in the moment and appreciate what you are doing when you know there will be consequences.

I have just seen these graphics which I think I need to take on board more, but it's still hard.

Wednesday, June 24, 2015

ME and Pain

I am in ridiculous amounts of pain at the moment, it is going right through me and I can't tell if it's my back or my stomach or both!  It was the same yesterday, it is making me feel really sick too.  It was like this yesterday and painkillers didn't help, so trying to avoid them today, heat is helping a bit, but the warm weather has decided to put in an appearance so I am cooking.

It's always difficult to know what causes what.  Am I in pain because I did too much at the weekend, is it the stress of having work done in the house, is it because I am fighting the bug that Emily has, or could it be the paint fumes?  On Monday the Drs phoned to say my vitamin D is low and I need a supplement, low Vit D can cause pain too, but I don't think it is that as it only got so much worse this week, blood test was last week.  Or is it just that I have have a bit of relief from pain due to doing less and increasing my Amitriptyline?  Or is it because I have been taking lots of painkillers?  It could be some all or none of these reasons!

I have got the Vit D supplement, but no instructions to take it so have to wait until I have seen Dr tomorrow. I am rather annoyed as I have been trying to find out my levels since March and with waits to see Dr and waits for blood tests have only just found out.  I am glad I am not seriously ill, it's no wonder people end up at A&E.

Emily was off school yesterday with a cold, she says she feels much better today and has gone to school, but she is still far from well and I feel bad that she has gone, but it was her choice.  it makes it easier for me as I have to arrange help if she doesn't go to school, but I am worried about her and the impact on her health of going when she is obviously not well.  She has swimming today and really wanted to go, but at last minute decided that maybe she wasn't up to it.  She is also supposed to be running race for life this afternoon, do hope she is ok.  it's always difficult to know what to do about time off school as they are put under a lot of pressure to have good attendance and told they are letting class down if they are off. I know a cold is not really ill, but it impacts on what they are able to do and spreads it around the other children and increases the time it takes for them to get better.  Mind you I always feel so ill with a cold, maybe normal people don't feel so bad.

Coincidentally I have just got to this on the Mindfulness course
"When you acknowledge pain, instead of trying to fight it or ignore it, you pay greater attention to the sensation of the pain, feeling kindly towards it, identifying with the sensation of this physical pain and the rawness within the body. Pain causes you to stiffen and tense, but when taking a mindful approach, it’s all about awareness, recognition and working with a deeper conjunction to the body and mind.
But often there is psychological pain too and this is caused through anxiety, frustration and stress. When learning to let go of this psychological pain, it is evident that any formerly tense muscles that surround the area of pain begin to relax and this helps to reduce the sensation of pain and your perception of it."( Mindfulness Diploma 2015)

Monday, June 22, 2015

ME and guilt

Been feeling really guilty and anxious this weekend.  There is a  lot going on and I am dependent on Rob to get things done, which makes me feel bad as he has a full time job and deserves a break at weekends, but weekends get so manic trying to fit things in and keep up with chores and activities.

On Saturday I ordered some new craft stuff, but then felt really guilty as it's not my money and I don't have a lot of time to do things so often things go unused, it feels wasteful and unfair on Rob and Emily, so why do I do it.  As I do my ordering online I often fill my shopping basket and then never check it out, I did this several times with these items, it was only when an offer came through from one of the companies that I finally ordered.  It's lovely getting new stuff and trying out new ideas, but it's always tempered by the guilt, I feel sick writing about it.  I then feel under pressure to use the stuff and think of ideas, but in reality there is little time and energy and other things take priority.  This morning I am trying to get going on a card that someone has ordered from me, but still feel guilty and that I should be getting other things done.  I have done two loads of washing and got Emily ready and to school, so why do I feel bad?  My kitchen is a mess, but B comes in to sort that out later, the dining room is full of half painted furniture,  I should sort that out, but its difficult to do and Rob wants to do it, but I know he doesn't really have the time and it's likely to stay there all week.  I get like this when I have people working in the house I feel like I should be running about doing things and looking busy!

I have extra things on this week, so do need to conserve my energy.  I am also getting in a panic as Rob is out tomorrow night so I need to be able to cook something for Emily and me, I also have to get things ready tonight as rob takes Emily to gymnastics.  I don't know why I am worrying as it will just be simple stuff to put in the oven, but then I feel bad as Emily has so many meals of chicken nuggets, chips and peas, especially on the night she doesn't eat at same time as us.  It what she asks for and I don't have the energy to do something better for her.  I can't eat the same as her because of my intolerances, so end up doing different things and get in a muddle, its so annoying and I waste a lot of energy worrying before I have even started to do anything.  it's not very in keeping with the mindfulness which has really gone out the window this weekend. It just makes me feel so useless and a burden.

Emily does a lot of outside school activities and I can't really get her to them so poor Rob has to get in from work, cook and then take Emily where ever she is going, leaving me alone a lot of the time, I feel like I never see them and when they are around there are basic things that need doing which we all find boring and frustrating and everyone is tired and irritable.

I have been trying not to let the building work get to me, as it will be great when it's done and it's something we have wanted to do for many years, but never had the money or time to get it done.  After so many times of putting it off we got a quote which was more reasonable and seeing their work we were very impressed so decided to bite the bullet and go for it.  The actual work is not really a problem, a bit noisy, but it the impacts on other things like painting furniture in the dining room, having to go and choose carpets, needing to find a decorator and it all gets overwhelming and I am stuck in the house with constant reminders of what needs to be done and feeling guilty because I can't do things and not wanting to ask Rob as he has enough to do already.

Emily hates change, so although she is excited about getting a new bedroom, she is also very unsettled and got upset with the scaffolding outside her bedroom and wants to help with things, that she can't really do, it's so frustrating.

Yesterday I met up with a lady who is doing skin care and make up to raise money for the Nepal earthquake appeal.  She was doing a skin cleanse and make up for just £4, her aim is to do 30 in 30 days.  It was nice to have it done, my beauty routine and make up gets very neglected.  I hardly ever wear make up and usually forget my skincare!  The lady is also trying to promote Tropic Skincare.  They are nice products, but more expensive than I would normally buy as I don't feel it's worth it when I rarely use them and don't go out much.  Thankfully she was not pushy and was basically trying to raise money, having just done fundraising myself I was keen to help and it's great when you get something for your donation too.  Sadly again this made me feel guilty though, it was Father's Day and there I was having something done for me and poor Rob sitting outside in car waiting for me, it's also his money, not that he minds a good cause.  Emily came in with me and of course chattered away.  Later on she said the make up is nice, but it's a waste of time and money to do it everyday.  So true Emily.  If anyone local is interested in supporting this lady with her good cause see details here.

After the makeup we went to Rivers Meet  to show our support at the Summer Fair.  There were many people there that know me and they all said wow you look great, you don't look like you, your hair looks great!  It's a bit of a shock really, I am not used to compliments and its hard to know how to take it.  Does that mean I usually look bad?  Should I try harder to look nice when I go out?  One person said to me  that I looked really well, but she she knows me realised that I probably didn't feel that good.  Then it's kind of I have to accept these compliments and say nice things in return, but I am useless at talking to people and it was noisy, so I felt I was being rude.  We also didn't buy anything, it feels wrong to go and look at the things people have made and say how nice they are, but not buy anything, I know they have put a lot of time and effort into their products and want to make a bit of money from it, but I can't buy things I already have or don't need.  I hope that lots of other people did buy.

More guilt was piled on when we got back home, as it was time for me to rest, but Emily didn't want me ton and then she got upset saying she had no one to play with, meaning other children, even though she was going out again an hour later to a Messy Church.  I felt bad because I couldn't go with her and because Rob had to take her and then come back and get tea ready whilst I rested.

It's all so frustrating and I always feel guilty and useless and push myself to try and do things so that others don't have to, which usually makes things worse not better.

Now I have to get something to eat and go to rest which all feels wrong whilst Rob is working, Emily is at school, the workmen are working and B comes in to sort the house out.  Most people would think an afternoon rest great, but not me I hate it and it feels so wrong that other people do so much for me, but I still complain that I have too much to do, or that I am missing out on things or can't do nice things.  Am I being selfish and unreasonable, am I am being unfair to others, should I try harder?  is it wrong to do things for pleasure or relaxation?

Thursday, June 18, 2015

Another year older

Thank you to everyone for my birthday and anniversary messages. We went out for lunch at and went to see a small exhibition at Thackray Medical Museum…/georgie-meadows-stitched-dr…. I had a party tea with Emily. I felt pretty rubbish by the end of the day, it's a shame ME doesn't give us one day off!

Rob got me a laptop, so I can now type in more comfort, hope that doesn't mean I will spend more time on computer though it's not good for me.

I found out yesterday that the nurses home at Derby Royal Infirmary as was is now being knocked down

My room is just hanging in there 2nd window up on the left!  It did not upset me as much as it did when I found out about it, but I have been on you tube watching people filming inside the derelict buildings and find it sad that part of my past is no longer there, but maybe this will finally allow me to move on instead of being stuck in the past and dwelling on regrets.

It's a busy week as building has finally started in the house.  The builders are being very good and keeping disruption to a minimum and I am trying to keep calm about it.  I even fell asleep yesterday afternoon, which is practically unheard of for me, but then I felt guilty and over did it later on and had a bad night, either dreaming or awake.

I am still trying to get settled on a new dose of Amitriptyline, which makes me drowsy during the day and dizzy, but its helping with pain control and I am calmer.  Hoping the drowsiness and dizzy will settle soon.  I have blood tests this morning too.

I have started a mindfulness course in an effort to be calmer and appreciate what I can do rather than being negative and full of regret all the time.  It was on a wowcher deal, so didn't cost too much. There is a relaxation talk to listen to, to start, but I haven't had chance yet its never quiet enough for me to hear it.  I have made a start on the reading parts and note making.  For the first week I have to keep a bit of a diary of thoughts and behaviour and note any patterns, for yesterday I have

Trying to be positive today, even though normal life is being disrupted by builders. Normally I would be very stressed by it and annoyed with the intrusion, but it is work we want doing and have been waiting for so thinking more positively. the builders are very friendly and as unintrusive as possible. I even fell asleep on the sofa at my rest time, that never happens!! Upset by B complaining about the building. Worried that I haven't got done what I wanted to do, but i did have a busy day yesterday.

Weds 17th

Fell asleep in afternoon, felt guilty afterwards and then overdid it and didn't sleep at night. tried not to get wound up with builders in, yes it is a bit of a hassle, but its work we want doing. Got wound up with B complaining about builders and they weren't causing any problems and not in her way, she has to complain and make me feel guilty.

I do hope that I can keep up with it and get some benefit, or will it be another thing that sits waiting.

I hope I am doing it right, think I need to ask Rob to look at it with me to be sure I am hopeless at following written instructions.

I read this article blog it,s very good and I agree with what she says.  I want to print it out and comment on it, but my printer has run out of ink!

It's a busy start to my 45th year, but hoping that I will keep calm and listen to my body's needs a bit more, it's difficult when things are happening in the house and each day is unpredictable.  They say as you get older you get wiser too, I am not so sure about that, more stubborn more like.

In the last few weeks I have written a couple of Mr Men style books called Little Miss Brainfog and Little Miss Pardon.  Not sure what to do with them.  Rob is trying to create pictures to go with the text and they are not typed up only in my scrawly handwriting at present.  I would like to share them on my blog, but don't want someone else to steal them, its a dilemma.  I know I looked into self publishing when i wrote my little ME book, there are places where you can do it, but they have to be more than a set number of words and mine wasn't, something else that will get put on a back burner and forgotten about, I am hopeless at finishing things off, or get to stage where I need help and then nothing happens.  I also have too many ongoing things and never finish one thing before starting another and I have little time and energy available to me and time just seems to run away.

Thursday, June 04, 2015

May Makes

With all the ME stuff and doom and gloom I feel like I haven't done anything else.  Just to prove to myself here is what I made in May

Made using an image from Pinterest, stitched with metallic thread and eyes and nose coloured with pencil.

Made with an Iris card from Dee Craft and ribbons.  Using ribbon instead of paper made the design more bulky, but worked ok.

Made for ME awareness week using Neon Blue Acrylic Round Beads, white snowflake beads and Blue Shamballa, the picture doesn't do it justice sadly.

A few more cards made with Dee Crafts cards, I am loving these at the moment

The two above are made using ribbons and the ones below using papers.

There I did do something other than feel really ill and moan!

ME and Me

I am really wound up today, my heart is pounding, probably from sitting in Drs waiting room for over an hour, it was noisy, bright and uncomfortable, I feel rubbish and want to be able to rest to cope with Emily later, all I ever seem to do is ask her to be quieter calm down, when really we should all be more like her and not drag her down onto the depression of long term illness and stress.

I feel bad for wasting Drs time on what must seem quite trivial to her.  

No one actually believes that ME is a serious issue and her time would be better spent with people more in need than me.  I am just fed up of feeling rubbish but at the end of the day will survive whatever.

And if you have other issues you are seen quickly not messed about waiting for appointments and tests and tests this has been going on since March that is how important it is.

Well she did ask to see me again don't think I would have bothered if she hadn't said to go back or just said see how I go.

I need to focus on something else rather than being ill and trying to make people understand it makes things worse not better and you don't get any sympathy or better understanding it just annoys people or you get others telling you they have worse problems (I am not saying they don't).

Nobody notices if you are better or worse just expect you to be there and carry on if you are not around they don't notice or care, I am fed up with it all, both normal people and ME people.  I need to do stuff that I want and not care about what others think want or need as nobody cares anyway and everything just seems a waste of time and effort and I spend all my time wishing I were doing something else or wanting to be well enough to do more stuff with Rob and Emily, not that there is much chance anyway as they are both out most of the time and then we have chores to do rest of the time.  Fed up of sitting on my own feeling ill and trying to fill time with stuff that makes me feel ill not able to rest or feel good when Rob and Emily around.

I put my back out on Monday so was in a mess, it is much better now, but still painful.  Rob had to work from home as I literally couldn't move. I had physio last night and she said my lower back is awful!!  Going again tomorrow, costing me a fortune, illness is not cheap.

The ME awareness has been a hard slog, I chose to do the events with the children as I wanted to do the fun creative stuff too and as Rob says they are the next generation and the ones that we need to educate about things as our lives will be in their hands one day.  Adults already have too many set ideas and are harder to educate.  I was worried particularly at school that people might complain about me speaking to their children, but I doubt many of the children said anything anyway and probably just said they made crowns!  I did think about giving leaflets to take home, but it was too much work and that may have been a step too far for the parents.

I had planned to speak as well, but Rob takes over.  I spoke a bit more at school, than the other event, but not much.  I had so many ideas in my head, but as ever I can't carry them out and Rob doesn't think to ask me what I want, but he is used to speaking for me he doesn't think that I might want a say sometimes.  It is also difficult to talk face to face about something that has such a big effect without being too emotional or depressing.

I spoke to my Gp about increasing Amitriptyline and she says its worth a try, the dose I am on is so low and have have been taking it for 7 years, it probably doesn't have much effect now.  It's mainly for pain, but she thinks it might help with my poor sleep too.  Last time I tried to increase I was too drowsy and woolly headed the next day and it caused issues with driving, but I feel like that already so is there anything to lose?  I have to have more blood tests to cover the things that weren't tested last time like Vit B, Vit D and Thyroid function, it's 2 weeks until test, 2 days after my birthday!

I think my birthday is also part of the issue, it marks another year of illness and no progress.  It is also my 14th wedding anniversary and the 9th anniversary of finding out I was pregnant with Emily, so quite an emotive day.  Of course being a week day I will be on my own most of the day, Emily will probably want a party tea, but then I can't eat most of it, so it feels like everyone else gets more out of it than me, I am such a grumpy so and so.  It's also getting to 44 and not having worked for 15 years and no chance of working or doing anything anywhere near useful or helpful to anyone.  I have been ill all my married life and all my daughters life, what sort of a life is that for my husband and daughter.

Then I feel bad for complaining there are people who are seriously ill, news stories all day about people who have died, or been badly injured, what right do I have to moan and feel sorry for myself? But I think at times like this I torture myself with these stories.

I need to do something to shake of this black cloud and change my focus for a while.

ME and My Mum 20 Questions.

There is a set of questions going round on Facebook at the moment that you are supposed to ask your kids.  I tried it on Emily, she was not impressed as said why are you asking me these you know I don't know, but some of her answers were quite enlightening and a reflection of how the ME affects us as a family. Emily's answers are in blue.

1. What is something your Mum always says to you?

Shut up, be still.  

Sadly true, at times I am really sensitive to noise and hustle and bustle and I can't concentrate on things in a noisy or busy environment which a house with a child is most of the time.  I hate telling her to be quiet or quieter, but she is so loud and never stops talking, but I don't think I ever tell her quite so bluntly as "shut up." I do ask her to be still if we are watching TV or playing a game as again it is very distracting and also makes me feel sick and dizzy, but she is never still.  I worry that she needs more exercise.

2. What makes you happy?

My bedroom and birthdays, (anyone's birthday)

3. How does Mum make you laugh?

Tickles me.  

True but there is a limit to when I can do it and how much :-(

4. What makes Mummy sad?

Daddy sometimes and me doing too many cartwheels.

True, Rob and I do disagree a lot about things as we are both tired and irritable a lot of the time and have different priorities and approaches to things.  She is always doing cartwheels and there just isn't the room in the house, but she does them anyway!

5. What was Mum like as a child?

I don't know.  Cheeky?

Ok fair point, not much is said about when I was a child.  I would not have got away with cheeky though Emily.

6. How old is Mum?


True, but only for a few more days

7. How tall is Mum?

No idea, about 2 metres?

Lol I had to check, but that is 6ft 7, I am about 5ft 3!

8. What is Mum's favourite thing to do

Get out of the house or have a bath

Pretty accurate, given my limitations.

9. What does Mum do when you are not around?

Sleep or computer

Partly true, I have to rest, but don't sleep, but I lay on the bed which to her means sleep.  Yes sadly I do use computer a lot, but its not all that I do.

10. What is Mum good at?


I don't think I am that good at it, but it's what I do given the chance, but its not easy and often stresses me out.

11. What is Mum not good at?

Cartwheels and Gymnastics

True, but she has never seen me try!

12. What does Mum do as a job?


True, sadly

13. What is Mum's favourite food?

I don't know, is it fish?

Well to be fair I do like fish, but I am allergic to it, so she has never seen me eat it as it literally makes me sick.

14. What makes you proud of Mum?

I have no idea, making bracelets maybe?

Sad answer

15. What do you and Mum do together?

Watch TV and make things for charity

Ok fair enough.  The charity things has come from Emily deciding last night that she is going to make bracelets from pipe cleaners and sell them for my charity, no idea how she plans to sell them, but she has a big bag of them made and says they are 10p each.  She has us all making them.

16. How are you the same as Mum?

Sometimes we have the same clothes in different sizes.

True I do sometimes buy kids clothes and we have a few items the same

17. How are you different to Mum?



18. What does Mum like most about Dad?


Sometimes I guess when it doesn't drive me mad!

19. Where is Mum's favourite place to go?

Rivers Meet and Salute

This is probably because these are the only places I do go.  Rivers Meet is a cafe, I do like it, but the noise gets too much and I am not able to enjoy it as much as I would like, we do go there for lunch sometimes at the weekend as otherwise I only get out to do school run.  I used to go to a quilting class there too in a quieter upstairs room, but it has moved and I can't go any more as it is too far away :-( Salute is a restaurant, we used to go in quite a lot, but now I find it too noisy and find it difficult to find suitable things to eat, even though they do Gluten free its difficult to find things with my other intolerances.  It's also quite expensive and we can't afford it that often, its amazing how much different eating out for 3 is to 2.  Emily likes it much more than me and some of the staff have known her from being a baby so they make a fuss of her.

20. How old was Mum when you were born?

In her 30's, from my working out 35

True, the Maths homework is paying off!

Wednesday, June 03, 2015

ME vs Cancer

Here is a great article about a fellow sufferer Jenny Andrews, who has had both ME and cancer and her experiences of the difference in attitude and treatment between the two and her descriptions of having ME.

There are some great quotes

"Jose Montoya, a professor of medicine at Stanford University and a leading expert in CFS, has described the condition as 'one of the greatest scientific and medical challenges of our time'. 
He said: 'Its symptoms often include not only overwhelming fatigue but also joint and muscle pain, incapacitating headaches, food intolerance, sore throat, enlargement of the lymph nodes, gastrointestinal problems, abnormal blood-pressure and heart-rate events, and hypersensitivity to light, noise or other sensations.'"

"Chronic fatigue is like having horrendous nausea and then being thrown on a ship - and feeling sea sick - with bags of potatoes tied to each limb - and then someone asking you to run a marathon. And that is just to get to the toilet."

"'I've been told I'm not ill, to have a glass of wine and that I'm actually depressed. There comes a point where you start to doubt yourself and think "am I"?
She continued: 'However with depression, you have no motivation, feel like there is no point to anything and have no fun any more. 
'I do have the motivation, drive and ambition to get up and do things - just not the physical strength.
'Some people think I'm making it up and being lazy - it's horrendous."

"'I've been told that in order to have the best chance of recovery, you need to start getting treatment within the first six months.
'But many doctors say you have to have had symptoms for six months before you are diagnosed with CFS."

"Tony Britton, of the ME Association, told MailOnline: 'We are not surprised by Jenny saying having chronic fatigue syndrome feels worse than those awful days when she had bladder cancer.
'When people have cancer they can generally access speedy and effective treatment, research is rapidly moving forward to reduce the death toll, come up with individualised treatments, and providing a good quality of life as long as possible. 'The whole medical and nursing establishment can get behind you.' He added that by contrast, CFS – which is also known as M.E. (myalgic encephalomyelitis) – is poorly understood."

Please do read the rest of the article.  Well done Jenny for getting this article published.

My husband had cancer in 2006/7 and despite having a strict drug regime and risking hospitalisation if he unable to keep his medication down he says he is glad he had the cancer over ME.  He is now able to lead a normal life and care for me and my daughter, people with ME can't do that.