Useless.com

I spend a lot of time feeling totally useless, and guilty.  Last week was particularly bad after, trying to sort out my craft stuff and move it to be more accessible, but of course when I do anything like that I have to pay for it and have landed myself in bed a few times from trying, but it's getting there slowly and I can see better what I have got (far too much) and of course found lots of unfinished stuff and had lots of ideas for using things, but never the time or energy.  Also On Friday Emily and I tried to take part in Rivers Meet Give a Duck an outfit which is a group making outfits for Chemo duck, cuddly ducks given to children having chemotherapy.  I should have known it was beyond me, I needed to be able to sit in a noisy room, follow a pattern, sew, cut out and have Emily with me, I lasted about 15 mins!  Plus part of my sewing machine was missing so couldn't use it and had to buy a new bit!  I was so disappointed and was in floods of tears after looking really stupid, letting people down and setting a bad example to Emily.  I am not really sure why I thought I would be able to do it anyway, my sewing skills are very basic and I can't follow recipes or patterns, but I thought it was a nice idea and Emily wanted to join in. I was feeling so bad when we got back home, I had bought a scone to eat, (gluten free!), which I rarely do and I wasn't able to eat it before we left as Emily and I were so upset.  When we got home Rob asked if I wanted the scone, I replied why should I treat myself?  I allowed myself half of it a bit later on and the other half a day later.  I posted a Facebook status saying "so upset with myself today, I really hate this illness and its stupid effects on me and my family, feeling useless"

There is also a course I would love to do on Play Therapy as a qualified Playworker with some knowledge of play therapy it really appeals and is on an offer, but it is up 150 hours of work.  At best I would manage an hour a day when Emily is at school and some days even that wouldn't be possible and would mean I wouldn't be able to manage any craft and would take me the best part of a year.  Again I got really upset and felt so useless, other people study on top of full time work and family commitments. Gaining a qualification wouldn't be of any use anyway if I can't work and would just add to my other unused qualifications, that is assuming that I would be able to do it which I might not with finding reading and understanding very difficult.  I am still tempted just for the material without getting the qualification.

Yesterday Emily was upset with me as she wanted me to go and play a game outside with her, but I can't play physical games and it is too cold for me to be outside and just sitting.  I did manage to rescue the situation by letting her throw a ball inside and we had a game of catch with me sat down which seems to have pacified her for now, but doesn't always work.  My husband quite often refuses to play physical games with her too, he has the ability, but may not feel like it or want to when she asks, he doesn't feel guilty, but then I feel guilty because I can't do it and because he doesn't want to and because she doesn't have siblings or friends to play with and so on!

It feels like everything I can do or can't makes me feel useless or guilty in one way or another.  I am definitely guilty until proven innocent!

So true Charlie Brown

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Pride and Prejudice Part 1

No, I am not on a trip to the library, but as usual trying to juggle everyday life and illness.

The book title kept popping into my head, I think because of the daily internal arguments over what I should be doing, could be doing, can do, can't do and what is best for me and other people all of which conflict making choices impossible.  There is no concrete right and wrong but for each choice there is a consequence for my health or my conscience.

I have just been looking at definitions of pride. How can one word mean so many things, many of which conflict?!  How can the same word mean "Consciousness of one’s own dignity." For example; he swallowed his pride and asked for help" or  "but, have you ever had anyone try to make a mockery of you, try to take away your dignity, your pride, your own self-worth?"  Whilst at the same time it can mean "The quality of having an excessively high opinion of oneself or one’s importance: for example "The ancient Greeks had a word for it - hubris which means excessive pride, arrogance." or "I had committed the cardinal sin of pride and this was my punishment."  Quotes from Oxford dictionaries.

Often we say we have our pride meaning our dignity as we are ashamed of our needs and feel that people will be prejudiced against us.  Prejudice being; "Preconceived opinion that is not based on reason or actual experience": for example "Some prejudices (preconceived opinions of an individual based on opinions about the many) have names such as racism, sexism, or ageism." (Oxford Dictionaries)

Why for example am I sitting here typing a blog when I feel really ill and know it is not good for me? Partly because I hate not doing something and I am very limited at the moment to what I can do, but mainly because I don't want to be thought lazy!  Who is going to think I am lazy?  There is only my daughter here and she is happily playing on the computer and for once not making any demands on me.  There is the guilt that I have been at home all day when my daughter and husband have been at school, and work and working hard and my husband is not yet home from his 12 hour day and his train is running late, but he is probably sat doing nothing on the train or even asleep, except when he gets texts from me!  And I feel like I have to go and tidy up the kitchen following mine and Emily's tea which was of the throw in the oven variety because Rob wasn't here to cook and I can't expect him to clear up a mess he didn't make even though it has cost me dear to make the simple meal.

It's not the sort of puffed up pride that I think I am too good and can't let other people do things, it's the shame of what I can't do and the shame of asking for help the need to keep my dignity intact sort of pride.

There is a lot of prejudice against people with ME, they are considered lazy or making up the illness and afraid to try things.  So how are we lazy when the simplest of tasks can make us ill, but we are too ashamed to be seen as lazy or making it up so we try so hard only to be knocked back and made more ill.  We are trying to save our pride.  On the other hand if we accept our limitations and ask for help or claim to be disabled then we get the prejudiced view that we are not disabled or that somehow disabled people are lesser beings, so either way we can't win.

I am so ashamed when I take my daughter to and from school that I have to be allowed to park in the school car park instead of being proud of the fact that I do take her to school myself, but that's mainly because I am too proud to ask for help, confused? Yes me too!  Today took another blow to my pride and had to use my walking stick even for the short distance from car to classroom because I could hardly walk and was feeling really dizzy, but I only gave in after quite a long argument with myself thinking that people would think badly of me or think I was looking for attention or sympathy.  In reality people probably didn't even notice, but I felt ashamed and useless whilst I should have been proud of myself for my achievement or was I just too proud to ask for help when I needed it?

My other issue is my hearing loss and the fact that I have hearing aids.  I won't admit that I can't hear or explain to people that I need them to speak clearer or speak up, I just let myself look stupid or ignorant which is not very dignified and does little to save my pride and I end up avoiding situations or conversations which also makes me look ignorant.  I am sure that it would be much more dignified to admit the problem, but then people won't talk to me because I can't hear or they will treat me like I am stupid, again it's a no win situation for me.

Having a blue badge allows me a little bit of pride and dignity in that I can collect my own prescription or park near the entrance to a small shop or the library.  Then my pride is shattered by those who don't think I should have one as I can walk a little and I become ashamed of my need and my pride in doing something for myself is taken away and replaced by guilt.  Take my blue badge away and have lost my small amount of dignity and pride in the small tasks because I wouldn't be able to do then any more.  Being unable to do these things would make me ashamed and guilty as I would have to swallow my pride and ask for help and would get the prejudice label of being lazy.

Well I do need to swallow my pride now and admit that I feel really tired, sick, dizzy and in pain and accept that I need to sit and do nothing or go to bed.

Watch out for Pride and Prejudice Pt 2 and also Sense and Sensibility which are currently spinning around in my head waiting until I can get them down on my blog!

As I am currently away from Facebook, where I share and promote my blog, please could you share this blog if you have found it interesting or useful.  Many thanks

ME is real and it's bad

I have seen a few things this week trying to get across the impact of ME and how it affects us

Firstly an article from Health Rising, "The authors looked at median and mean quality of life scores. The median scores are a more accurate measurement of a community because they’re not skewed by people with really high or low scores. How did the quality of the lives of people with ME/CFS stack up next to those of people with cancer, multiple sclerosis, heart attack or stroke? They were worse – significantly worse."  There is another take on it here  stating "In a list of 21 medical conditions, including: breast cancer, colon cancer, heart disease, renal failure, stroke brain, lung cancer, rheumatoid arthritis, sclerosis, depression, angina, among 10 others…ME/CFS is listed first in severity of disability.   FIRST."

Along similar lines this image 

and this 

I have also read a couple of blog posts by Sian Wooton who describes what it is like to have the condition and the realities of trying to do things that you want to do Let me put it this way and Holiday Reality.  Well said Sian.  And another post from Anna Jones about fatigue.

I am sure that people will say that I am not that bad, believe what you like, I know how it feels and it hurts not to be believed and makes me push myself all the more which makes things worse.

I think some of these images sum up my feelings, especially the last one!!

Steps.....

Today was Emily's school year 6 leavers service in church.  Only 3 years and it will be her turn!  Time moves on so fast and I feel like I have been left behind as I am so stuck with this stupid illness.  I try to move on and be happy and take pleasure from things, but the illness comes along too.

I doesn't seem that long since I was 11 and moving to high school, we didn't get such an amazing send off and celebrations like they do now, it just happened. time seems to run away with us.

In church we sang one more step along the world I go, a song we had at our wedding and Emily's christening, I'm having it at my funeral too!  It always make me think of the good times and the bad, we are constantly moving along and things are changing even if they aren't as big as moving to high school.  We mark large steps the life events, but we don't notice the little steps we take each day.  For me today the steps I had to take up to the church were slow and painful and I returned home in agony and had to go and lie down.  I don't feel good that all I could do was go to the service, but was my achievement any less than those children leaving for high school?  I hope they have nicer memories of it than me of course.

When I moved to high school that was the beginning of my health problems and my progress was very slow at times, but things did still move on.  I didn't go through high school like my peers and go on to do degrees and get good jobs etc, but life did still move on and I did what I could within ,my limitations.  Instead of being proud though I feel ashamed as I didn't do what normal people were doing and didn't get the education that they got, even years later when I got a Masters degree it felt like a failure not a success as I was older and was too ill by then to get a job.

Each day I feel ashamed of what I manage to do, to me it's usually too much, but in the grand scheme of things is not much.  This week I have made 2 cards, but I feel I should have done more.  I feel guilty because I didn't make Emily's teacher a gift (Emily made one and didn't want me to), but it still feels wrong and I might still make it as it's something I want to do, but even then I won't be happy with it.  Many of the big steps in my life have been difficult and I sometimes wonder if that puts me off making the little steps as I am afraid of failure and not doing things means I can't fail, but then I feel bad for not trying.  On the other hand each day feels like a big struggle just to manage the daily routine without fitting in other things as well.

At the moment we are taking quite a big step by having building work done, we have wanted to do it for 8 years but always put it off due to cost and stress involved, but when we inherited some money last year we decided to go for it.  It should be a happy time watching it being done and planning how it will be decorated and furnished, but I am finding it stressful and worry about the cost and getting the work done after the builders finish.  I am lucky that the builders are great and aren't intruding on my life and routine and are very happy and helpful. So why do I feel guilty for having the work done, ashamed that we can afford to do it, worried that we are showing off or being unfair to those who are worse off.  one of the reasons we are having the building done is because we felt we needed to live up to expectations and improve our house as we can't afford to move.  It will be great to have more space, but it's not essential and we could just have got rid of a load of junk instead!!  We are planning it as a room for Emily so that she can have her own space as she grows up, but then it feels like we are spoiling her and not making her realise that you can't have everything.

Then I feel guilty for the things I can do as there are many people worse off than me, much sicker than me and less fortunate than me.  My default setting seems to be guilt.

I have had a bad week thanks to someone's insensitivity which made me feel useless and like I spoil things for my family too.  When I get upset I start going through all my regrets and limitations and feel worse than ever and that I am not a good wife or mother.  My pain has been really bad, I don't know if this is linked to the emotional stuff, or possibly when I feel bad about myself I try to do more to stop the thinking and to try and prove I can do things.  The emotions are draining and I have not been sleeping, so all in all a bad week.  I need to put it behind me and look for the little the things, the good things, the things I can do.  I also started feeling even more guilty about spending money as we have a lot to pay out for and it looks like I will lose my DLA sooner than thought as the changeover to PIP has been brought forward.  Losing the DLA means I lose my Motability car and my Blue Badge which both give my my little bit of independence, even if it is only that I can take Emily to school, go to the Drs and collect my own prescriptions, it's the little things that count and make me feel part way human and useful.

Mind you maybe that is not a bad thing sometimes, today I felt really ill, but still had to collect Emily from school, I was in a lot of pain and my concentration was not great and I managed to hit a sign in the school car park, luckily no damage to the car, just my pride!

Yesterday I took another big step for me, I decided to try and make myself feel a bit brighter and  to make most of the nice weather and go on my mobility scooter to fetch Emily from school and got to the local library. I lost count of the number of people who took the mickey, stared at me or deliberately got in the way and then when we got to the library for a book I had checked online before going the book wasn't there. I asked at the counter and she said it was returned to another branch and they have lost it, so I said yes but it says it is available at this branch, that's right she said because it is our copy and was returned to another branch!!! She has reserved another copy for me, but that means I will have to pay for it which was why I had checked if it was at local branch before going. I ended fed up, annoyed and in pain, not to mention insulted and wondering why I bother making an effort to do things.

So it's back to little steps, well they are today as the pain does not allow big steps, I feel like I am shuffling along like a little old lady, which according to my daughter I am!  Think we are all feeling old this week as we mark the passing of another year, Emily keeps saying time is going too fast and she should not be this old, she is 8, but then it's only another 8 years until she can leave school and make her own way in the world.

Apparently this week they added a leap second into a day as the world is turning slower, doesn't feel like it to me! I keep saying I am sensitive to movement and it is the turning of the earth that makes me feel dizzy all the time!  Well it moves at 1,000 miles an hour that makes me dizzy thinking about it.

Well time for some little steps to the kitchen to make a cup of tea, that is one thing I always appreciate.

One more step along the world I go,
One more step along the world I go;
From the old things to the new,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.

Round the corners of the world I turn,
More and more about the world I learn;
All the new things that I see
You'll be looking at along with me.
And it's from the old I travel to the new;
Keep me travelling along with you.

As I travel through the bad and good,
Keep me travelling the way I should.
Where I see no way to go,
You'll be telling me the way, I know.
And it's from the old I travel to the new;
Keep me travelling along with you.

Give me courage when the world is rough,
Keep me loving though the world is tough;
Leap and sing in all I do,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.

You are older than the world can be,
You are younger than the life in me;
Ever old and ever new,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.

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)

Another year older

Thank you to everyone for my birthday and anniversary messages. We went out for lunch at http://2oxfordplace.com/ and went to see a small exhibition at Thackray Medical Museum http://wellcomecollection.org/…/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.

ME, tell it how it is

I have come across many good graphics in the last few days and as I don't have the energy for writing today I thought I would share those instead

I am well aware!

What a day yesterday, I was feeling so ill and down and convinced myself I was so pathetic, I was so stressed frustrated and feeling useless I needed to rest but couldn't I was so fed up I wanted to scream cry etc but that won't make it any better will it?  Is it right to post things like this and bore every one with my moans and self pity or do I keep it to myself until my head explodes? Every thing feels wrong. I am so pathetic and so fed up.

I was have a really bad day mentally and physically, awful pain, dizziness and feeling sick and a brain that just wouldn't work, to name but a few of the symptoms.  Some of the symptoms are getting quite scary, the numbness and tingling in my feet, legs, arms, hands and face, the awful dizziness that makes it hard to even sit up and the brain that feels like it has ceased up.  I finally decided to make a Drs appt, but it is 2 weeks away and I know she can't do anything, so I may even cancel it before I go, I don't like wasting her time or stopping other people being able to get seen.

I have thrown myself into the awareness campaign, but that it not really a good thing to do as it shows how not to do things!! But hey ho. I have depressed myself by watching C word and Stranger on the Bridge and convinced myself that I am truly pathetic and moaning about nothing. I had a really bad day yesterday, mentally and physically. I ended up doing quite a bit of writing laid on the floor and had a chat with Rob whilst Emily was out so I feel a bit more settled. Just got to see how the next few days go, I have things to do so won't have as much time to think, but it will be hard physically and I will pay the price again.

This what I wrote, but it's only the tip of the iceberg

Going over the old stuff made me realise what a lot we have been through and that we have got through it, but it also makes me want to be able to make the most of life now and we can't.  One of the pieces written way back mentioned my weight falling to 7st 3!  Ha that's ancient history I have not been over 7 stone since losing my post pregnancy weight and I do eat.  When I used to see the CFS Dr all she ever said was put on weight you will feel better, actually it makes no difference as long as I can keep around 6st 11 or 12 which is sometimes hard I am happy with that, I can't be doing with any other pressures, but I do have to make the effort to eat properly sometimes to avoid my weight dropping to the lowest I got at 6st 8, but I am never going to be a big person and please don't try to feed me up as eating too much upsets my stomach and makes it harder to keep the weight on.

I really must stop now, but leave you with these