How do I know if it is working?

If you have read my previous post you will know I am trying something called Alpha Stim.  It's an expensive piece of equipment that is meant to help with pain, anxiety and depression.

"The Alpha-Stim® M unites Microcurrent Electrical Therapy (MET) with Cranial Electrotherapy (CES) like never before. Microcurrent Electrical Therapy has been proven to treat acute, chronic and postoperative pain. This covers all sorts of conditions, including problems that are hard to treat with other methods. The device does this by transferring a tiny electric current to the body, which gives you long-lasting pain-relief. Unlike TENS machines, which uses a current far greater than that of the body, MET uses a much lower and safer current to provide sustained cumulative results. By utilising CES in addition to MET, the device has the ability to treat a range of psychological conditions, like Stress, Anxiety and Insomnia."

When I first tried it, it made me feel sick and dizzy, I was advised to keep trying on a lower setting.  I have been doing this for a while and am using the pads rather than ear clips as they are supposed to cause less of an issue with dizziness.  I really can't tell any difference.  My dizziness is bad, but has been for a while and it is driving me mad as it makes every day takes difficult.  I don't know if the Stim is making it worse or if it's some sort of flare.  I am used to being dizzy I have had it for 20 years so no idea what has made it worse.  A recent blood test showed that I am slightly anaemic and I have to have another test to see if it is because of low iron or because of a potential bleed somewhere.  My Vit D is also a bit low and I have begun medication for that.  I also had an ECG as I have a lot of palpitations especially when trying to rest, but the ECG showed I have a "perfect" heart!  I have never been called perfect before!  I also increased some of my medication at the end of last year which could also be causing the dizziness, but it's difficult to know.

Since I have been using the Stim, I seem to have been even more tired, needing extra rest during the day and going to bed before my daughter most nights.  The Stim is not supposed to make you more awake, but it is supposed to help relax and help with insomnia, but I haven't slept any better.  One day when using it, I got a shooting pain up my neck.

Sometimes I feel that I am being a bit calmer overall and dealing with things a bit better, but if so it's marginal.  My pain has been a bit better at times too, but then it can be really bad too.  I am taking less painkillers, but that is because my GP asked me to stop the anti inflammatories.  I sometimes think the pain is better because of the adrenaline that causes the heart pounding and restlessness.  On the other hand I am taking more codeine now which causes dizziness and headaches.

I have the Stim for a 60 day trial, or rather you can return for a refund up to 60 days.  I have about 3 weeks left, but feel that I have to use it and say it works, but also think that for the price it needs to be making a bigger impact to justify the cost and keeping it and there are certainly other things the money could be used for.  The refund is also not a full refund as you still have to cover the consumables that come with it, and that is £89.  Of course if I get stressed about it working then it is going to be difficult to see any results.

Looking online I can't see any negative reviews, which does seem a bit strange. There are a couple of people on Amazon who said it hasn't worked for them.

I was convinced to try it when I saw that it could be used for children too as I thought I could more justify the cost if we could get the benefit as a whole family, but now I am reluctant to try it on others as it seems just weird.  Rob and Emily have anxiety issues, but given that Rob had a brain tumour and Emily is so young I am wary of them using it.  If it was having a noticeable effect on me and no side effects then I would try them too.

I know I am funny about anything that messes with my head, I get dizzier having my hair done, when travelling or even wearing a hat sometimes. Noise makes me dizzy, sugar makes me dizzy, so feel like I am an awkward so and so as I have been told many times too.

I know I need to give it a bit more chance to work, but there is just something that makes me feel I don't like it.  Am I being too negative to allow it to work?  I guess I have to give it a bit longer.  There is never going to be a magic cure and any little improvement is better than nothing, but really don't know.  What if I decide it's not working and send it back and then find the dizziness stays the same and the pain, anxiety and insomnia increase, I can't buy it again!

Any thoughts anyone?

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)

Everybody Hurts

Having a rubbish week this week, pain, fatigue, fighting a throat infection, dizzy weak :-(

One of my favourite songs popped into my head Everybody Hurts by REM

"Everybody Hurts"

When your day is long
And the night, the night is yours alone
When you're sure you've had enough
Of this life, well hang on

Don't let yourself go
'Cause everybody cries
And everybody hurts sometimes

Sometimes everything is wrong
Now it's time to sing along
When your day is night alone (Hold on, hold on)
If you feel like letting go (Hold on)
If you think you've had too much
Of this life, well hang on

Everybody hurts
Take comfort in your friends
Everybody hurts
Don't throw your hand, oh no

Don't throw your hand
If you feel like you're alone
No, no, no, you are not alone

If you're on your own in this life
The days and nights are long
When you think you've had too much of this life to hang on

Well, everybody hurts sometimes
Everybody cries
Everybody hurts sometimes
And everybody hurts sometimes

So hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts

The words are quite appropriate and also remind us that we are not the only one suffering. It also ties in with the post I wrote the other day about things feeling wrong.

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.

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.

Dear Pain

What can I do?

I am so fed up of everything I do having consequences and affecting me so much.  I know I am always doing too much and doing things that are not good for me, but if I cut out all the bad things what would be left.  Life goes on and you can either go with it as best you can and make the most of it or give up.  I can't give up with a 7 year old to care for and a house to keep in order.  If I did the bare minimum I would probably feel ok and be able to cope, but that would mean never going out, not being able to do things with my daughter, not having anyone in the house and so on.

I have commitments each day and although I rest each afternoon I have to be up early and getting on with the day.  Might not seem much to others, but putting in the washing and making sure Emily up and ready and taking her to school, I am exhausted before 9am, well I am exhausted before I get up!  I go to bed early, but then get fed up of being in bed because I can't sleep and then need to get up because I am in pain or my mind is driving me mad.  I am really struggling today as I had my hair coloured yesterday, along with Emily having a friend for tea and then having tantrums too.  I was in bed at the same time as Emily, but then only got about 4 hours sleep.  I can't sit down for long as its uncomfortable, but I can't move about a lot either although I do much more than I should, stairs are a killer, but they have to be climbed and I wouldn't want to not use them, but the effort builds up through the day and that final climb to bed can feel like Everest and of course you can guarantee I will have left something I need downstairs!  If I do sit down or lie down my mind starts racing with things I need to do so I get up and try and do things, get distracted by something else and end up doing too much.  I try to save my energy for when Emily comes home, but despite resting (well laying on the bed) for two to three hours by the time I get her home I am ready to rest again and then there is no chance until she is in bed and then there are usually things to do and by the time I do get to bed I am running on adrenaline and can't sleep and so it goes on.

What should I do with myself.  I sit at the computer when I am not able to do other things, but its not good for my pain and makes me dizzy.  Its often my only contact with the outside world, but then if there are things I need to deal with I get stressed about them.  My contact with most people is by email or text due to my hearing loss, which is better for me as conversation is difficult to concentrate on even with good hearing.

But I need to get out and have contact sometimes, but then the effort of going somewhere is so much I feel ill and can't take part or can't follow conversation.  Then wonder why I bother and come across as being ignorant and or stupid.

I type my blog as an outlet, but it really is hard and not good for my health, but helps with my sanity I think.

I know that I need to do much less, but things just pile up, I don't work, I don't do my own housework or even wash my own hair, but that means I have to have people in who do it for me and that can be just as draining, having to make conversation, cope with the noise and disruption and people competing for my attention and the associated paperwork and organisation really gets to me.  I have just had a letter from the council saying I need a review of the money that pays for my care and help.  I need that money to exist, but the effort of justifying it is so hard.  Last time they took quite a bit of it away from me, I expect they will do the same again.  I know the government need to make cuts and that we can't expect free money, but its the way it is done, its such hard work and you feel like a fraud, whilst of course many people get away with it.  I don't have the energy to fight again and sometimes wonder if having the help is more trouble than its worth, but what would I do without it, I can't afford to pay for it myself.  There are some things that I would have to pay for somehow and other things I would have to go without, but that makes life even harder, not to mention the stress of it all too.

I know I am lucky in that I can do some things and I have to be grateful for that and I know many people suffer much more financially, my husband does have a job, but if I lost my payments he would be working to pay for me being disabled, that's not fair to him.  I get no benefits and only got the care payments when I was in hospital whilst pregnant and my husband had cancer and couldn't care for himself let alone me.  I still get them as I have a child to care for and a husband with health issues, not because I am ill myself.  Apparently people from benefits are reading peoples Facebook and blogs etc to collect evidence of fraud, well good luck reading mine, its not very exciting and you won't find any pictures of me mountain climbing or jetting of to foreign places, unless they are wheelchair friendly and cheap!  I can't even walk to the bus stop or even to the end of the street!  It's sad that the people committing the fraud are good liars and those of us with genuine claims are treated like liars.

My wheelchair and scooter give me a life outside the house, but I need someone to push me in wheelchair and my scooter needs servicing and its too cold to use it now anyway.  My walking stick is supposed to help me, but I am just as likely to trip over it or drop it so it becomes a nuisance and most of the time I am not walking far, but I should use it more.  It's such a pain always being different though when all you want to do is blend in and be normal.  My daughter has been picked on because I am disabled, how cruel is that?!  The last thing I want is for her to suffer because of me, but of course she does, either because I am limited in what I can do with her and for her (I already do more than I should), or because I can't hear her or can't cope with the noise and energy that she has.  I try to make sure her life is as normal as possible, but it's always going to be a bit different.  She will always stand out as I need to park in the school car park as I can't walk from the street parking an issue which continues to cause problems even though she has been there for 3 years.  Last year I had to take her in through school rather than to the classroom door as it was too far from the car park, so she will stand out and its not what I want, but I want to be able to do these things for her.

I enjoy craft activities, but do them less and less as I struggle to concentrate and get out and put away the stuff I need and it often seems pointless as I have an item that I can't do anything with.  I have made lots of bracelets, but never wear them, I hardly ever go out and if I do I don't put much effort into getting ready.  I make cards, but always seem to miss the event I was making it for so it either gets unfinished or stuck in a box.  I like knitting, but struggle to follow patterns and keep track of where I am so again little gets done and have many unfinished projects with starting something which might be easier to do and can't do that alongside watching Tv  or having a conversation.  I have spent two years making a quilt, its almost finished now, but only really do it at the classes and what will happen to it when its done?  Nothing.  I have enjoyed doing it, but its not what I wanted it to be.  I struggle after going to the classes and now Rob has to go with me to help with the carrying, driving, cutting and instructions so its not really a thing for me any more.  I really have to try and rest tomorrow as it is this months class on Friday.  Hoping to get a small Christmas project made, but en what will happen to that, it will spend 50 weeks of the year out of sight.  But I want to do things, its so frustrating.

I like cooking and baking, but can't manage the preparation or standing over anything, can't follow a recipe.  Occasionally make packet mix buns with Emily, but only if she mixes it.  I have to make my own bread with being intolerant to gluten and yeast, thankfully I have now found a packet mix for that, before I only had bread if Rob had time to make it, but its all still an effort and there is no enjoyment in it.  My cooking is limited to something I can put straight in oven or microwave or Rob has to cook when he gets home, so our meals are rather limited. The oven is currently broken so limits us even more and I can't ring up about it and Rob hasn't had time and can't get someone else to do it as they need to be able to explain the problem.  Add in my food intolerances and food gets very boring.  I depress myself finding lovely looking recipes on Pinterest, but we never get chance to try them or they are not suitable.  I mean what can you have that's gluten free, dairy free, sugar free, fish free and easy to prepare?!  Availability is getting better, but its makes shopping and cooking quite a chore.  I can't go to the shop and browse the shelves or shop for nice ingredients, my shopping is made up of clicks on Tesco's website and hoping that stuff gets delivered or sending Rob to the shop to buy what he chooses.  If I do venture in a shop I need my wheelchair or scooter and the lights and noise get too much after a few minutes, but I can't come out mid shop.

This makes it all sound as if I do nothing, but yet I feel like I am always busy and exhausted and doing far too much.  I am worn out doing basics and then if something unexpected comes along and I have to deal with it as often does happen its really difficult, but I can't just ignore things or wait for a better time as the better time never comes.

My head is fit to burst with frustration, but I am one of the luckier ones, I know that and I have to try and find some good in each day, but when everything feels such an effort its hard to do.

I know I need to change some of my priorities and cut back on what I do and stop letting things get to me as the emotional stuff can be as draining as physical stuff, more so sometimes.

My positives for today are the kind words this morning from Maggy, finishing the card I was making and in time too and finding the happy apps for my phone.  But every new thing I take on to try and make things better is another demand on my time and energy, its so difficult to know what is right and what is wrong and with ME it often feels like whatever choice you make its the wrong one and there is a consequence.

Thank you

Thank you to those who read my feeling guilty post and for the kind messages, I know you all have issues of your own.  I am having a grotty day, feeling sorry for myself and trying to get things done and it really gets me down.

I also read this article earlier about a girl with scoliosis.  I was diagnosed with Scoliosis at 13 and had to wear a back brace through my teens until I stopped growing, it didn't reduce the curve but stopped it getting worse.  My curve is an s shaped curve so total curve is only 16 degrees (I think, its a long time ago) my pain is mainly at the lower curve where the muscles are stressed I also have a lot of shoulder and neck pain nearer to the top curve. Even though the over all curve is not that much I do look wonky and tend to cover up.  I was lucky not to need surgery, although I was told I could have it if I wanted it!  The brace was very bulky and heavy, I couldn't bend and had to wear all the time, except in bed, it ruined my clothes, rubbed my skin and was very hot in the summer.  I know I got off lightly, but it didn't feel like it at the time.

The girl in the article is a great inspiration and it is a shame about peoples comments and perception of beauty and perfection, its a cruel world we live in.

Feeling guilty and pathetic

How do you cope when you hear about other people being ill with serious illness? Does it make you feel guilty? And like you are making a fuss over nothing? And that you should be able to get up and carry on like others do?

My thoughts for today.  Many people have awful illnesses or problems to deal with and still carry on with life no matter how hard, so why can't I do that?  All the people who help me have health issues of their own and are often unwell and or in pain, but still work for me, whilst I have to rest and be helped.  Do I just need a kick up the bum and to get on with things?  Would I be better if I had a job, stopped feeling sorry for myself, got out of the house, had a hobby, played with my daughter etc, etc?

All I know is that simple activities like having a bath, ironing a few clothes, making a bed are exhausting and leave me in pain.  I do try and always push beyond my limits as I don't want to let people down or look bad.  But its not as bad as other illnesses is it?  How can other people work through the pain, the fatigue or other symptoms and yet I need to go and rest and even then don't feel much better.  A friend of mine has been having cancer treatment through the summer, she is really positive and has been carrying on as much as she can despite fatigue and demands of treatment and hospital visits. I haven't even been able to summon the time and energy to go and see her, she is 130 miles away, not around the corner, but even so I feel bad.

I want to be able to work and carry on and lead a normal life, I feel like I miss out on so much and that other people must be so much stronger than me.  People must think I am so pathetic.  I don't have to have any treatment or go to hospital appointments or have lots of tests all I have to do is live with a host of symptoms, surely that shouldn't be so difficult and I could do more.  Make more of an effort to get things done or finished; be with people; be a better mum, friend, wife, daughter etc; do things for myself instead of getting help; stop making excuses and get on with it.  But I do try and I am floored by my efforts, so how can others do it and I can't?  There are so many jobs I would like to do and people I would like to help, things I would like to study or make, things I want to do for and with my family.

I feel like I have wasted so much of my life and not made anything of myself, everything I try seems to go wrong, but is that because of me, not the ME?  Is it my attitude that is wrong? Is it because I don't try hard enough, because I give in, because I can't cope with pain and fatigue and other symptoms.  

I get upset watching Tv programmes like Bake Off or Masterchef, all the contestants seem to be a similar age to me (43) and want a change of career or a challenge as they have reached a certain age.  I don't have a career and my only challenge is getting through the day.  Or if I watch Homes Under the Hammer people have the money to buy a house, they do it up along side a full time job and then sell it on and make a profit.  The houses always look great and very few people fail.  When we do anything in the house its always basic and functional, nothing matches and we are lucky if it gets fully finished or finished in the way we anticipated.  Maybe I shouldn't watch these sorts of programmes, but they are easy to watch, don't need much concentration or stamina to watch.  I don't watch a lot of TV as again there is little time and energy and it is surprisingly difficult with concentration and hearing issues, not to mention little control over what is actually on.  most of the stuff I watch is recorded so we can watch it in peace after Emily goes to bed, but by then I can only manage to watch about half an hour even of easy TV.  

You hear of people with terminal illnesses running marathons or fundraising for a great cause.  I would never be interested in running a marathon even if I was able to, but a long walk would be good and fundraising is a great thing to do as well as raising awareness.  They don't sit there saying how bad things are and how life is so cruel, they get out there and get on with it and enjoy what they have. What stops me from doing that?

I need to be very pathetic now and go to rest.  I still haven't got all the jobs done and I am very unsettled so don't think it will be a restful rest, but I know if I push on I will be in an even worse state when Emily gets home.  I know 90 year olds who can do more than me, makes me feel so pathetic,  I know many don't have the luxury of being alive or reaching old age so who am I to complain about being able to feel the pain, fatigue, dizziness and other symptoms or to have the chance to worry about them and wonder what life holds for me.

When I started this blog I had great aspirations for it, I was going to make lots of informative posts, create lots of craft items to show, but all I seem to do is write about how I feel and not achieve anything.

Frustrations

Its been a very frustrating day today.  As usual I was up early, its nice to get a bit of peace and quiet before anyone else gets up, but I just started looking at something I needed to do and Emily got up, so that was that.  I got her breakfast ready and then it just sat there for half an hour before she even touched it and then left all the crusts and more besides, she has rather a generous boundary on crusts!  I decided to have a bath whilst Emily and Rob finished their breakfast, but then had to chivvy them to get ready.  I wanted to get out in the sunshine, but the only things to do were chores so we went down into the town and got local jobs done; bottle bank, chemist.  We did go for a drink, but it was noisy and although Emily asked to go, she then played up so we ended up coming home.

Meal times are very frustrating I have many restrictions and basically have the same breakfast and lunch 7 days a week.  I fancied something a bit different today, but not having been shopping or able to go anywhere it was the same thing again.  My diet is very boring, no wheat, no yeast, limited dairy, limited sugar, no fish, no caffeine and no alcohol.  Gluten free food is very expensive and not very appetising much of the time.  I spend a lot of time looking at recipes, but never have the time or energy to make them.  I have finally found a yeast free, gluten free bread mix which is quick and easy to make from Helen's. Even then I have to get someone to help mix it.  After tears and frustrations lunchtime was the same old buttered toast for me, bread not big enough to make sandwiches and has to be toasted or it's too dry. Again Emily left a big chunk of hers even though its what she asked for and the same again at tea time.  Rob made some nice cauliflower muffins to go with bacon for us, but Emily asked for pasta which he made especially for her.

After tea Emily wanted to play on the wii, not a good activity for me, I can manage some of the easier activities on a good day, but not for long, but today she was boxing and cycling, wears me out watching, so I ended up picking up things that had been left out and tidying up generally, not good use of my energy, but I can't sit and do nothing just in case someone wants me.  I end up pottering about doing bits of things as it doesn't require any concentration, but I soon run out of energy and then can't do nice things with others and then come across miserable all the time.  Well its not an appearance today its true, I just get so fed up.

Weekends are hard as I am stuck in the house all week, only get out to do school run normally and then at weekends I want to go out, nothing adventurous just fresh air and change of scenery, but there are jobs that need doing and Rob and Emily have been out all week so are happy to stay at home.  They get choice for their dinners and a change of scenery every day.  I could go out if I wanted to, but then I wouldn't have the energy to do school run and look after Emily before and after school so have to stay in.  I also have to be in for people who come in to help, but I find that tiring and demanding and an invasion of my space at times, even though I am grateful for the help

Hoping for a nice evening watching Strictly with Emily, but she had other ideas and talked through the dances so I switched it off, it was too difficult to follow.  We did play a game for a while, then she decided that she wanted to play in a cardboard box and that I should run around the room after her, yeah right!

I feel like I am being awkward and ungrateful all the time.  Last night Rob went out, I had paid for him to go to a curry evening, but then realised it was for our wedding anniversary, so he went out and I stayed in and put Emily to bed, hmmmmm.  We never do things together.  When he came back he said he had booked for both of us to go to the next one which is a Diwali celebration, but Emily is going too and its late at night and I don't know what I will be able to eat, so it rather spoils the thing for me.  Ah well he did try, but I end up looking ungrateful.  It's always the same if we go out and tempers get frayed and things get spoiled.

Rob is still settling Emily into bed, so looks like another evening where I don't get to see him, I think we speak more by text and email than we do face to face.

I'm going to stop now as I am making more mistakes than I am getting right so it takes forever to type anything.  Apologies if some of this may not make sense my head is full of cotton wool rather like this I think

except I think, but it doesn't work.

Painful day

Its been an awful pain filled day today.  My pain has been worse recently and today it has been unbelievable and at times I have not known what to do with myself, unable to settle or get comfy for anything.  I think it has been caused by some of the physical things I have been doing like sorting things out in Emily's bedroom, holding Emily to calm her down and repeated trips up the stairs to take Emily back to bed, plus it the end of the school holidays and it always hits me when I do slow down a bit, not that life has really slowed down I just get a quiet bit during the day.  Today everything seems to hurt especially my lower back, neck and legs.  I have been popping the painkillers but sometimes I think they make it worse so not taken any for a bit, will dose up at bedtime instead at least then I have a small chance of sleeping.

I find that emotional stuff makes my pain worse too.  Today is the 3rd anniversary of my cousin's death, he died just 37 in an accident.  I feel for his family and fiancée and on days like this they are in my thoughts more.

My cousin with Emily at her 3rd birthday.

with Emily at her naming ceremony

My good friend Pat read my blog last week and realised I needed someone to talk to and kindly listened to me today and helped me to see this from a different perspective and gave me other things to think about, she is a very calm lady and very perceptive so is always helpful and I am very grateful for her listening and thoughts.

Emily is outside with Rob as Rob has bought a bike to go cycling with her, they don't seem to be doing much cycling though, I think Emily thinks she needs to teach him to ride it!

Word Play

I have not been up to writing a lot, but have been playing with some words and what they mean to me.

The first is Frustrations

Fatigue

Requirements

Uncertainty

Stamina (lack of)

Tension

Restrictions

Abilities

Time

Independence (lack of )

Overwhelmed

Normality (lack of)

Stereotypes (negative)

Next is Symptoms

Sinus pain

Yeast infection

Muscle pain

Poor concentration

Tinnitus

Over tired

Muscle pain

Soreness

Pain

Persistant

Ache

Intense

Nagging

Fatigue

Failing

Anxious

Tiredness

Insomnia

Gaunt

Upset

Exhausted

Disabled

Different

Invisible

Slow

Awkward

Burden

Less able

Embarrassed

Difficult

Unsettled

Very unsettled at the moment.  Had no sleep last night and no help this morning so had to get up and manage.  Pain was bad during the night and first thing it is much better now as I have been sat on the bed unravelling some wool.  The wool for waistcoat is in hanks so I need to make it into balls first.  Still doing the first one taken me an hour and a half so far, wonder if the waistcoat will ever get started 8-|

Emily has been trying to grow her hair so she can have plaited bunches! I managed to do them for her this morning just.  They have probably come out by now

Well better get back to my ball of wool, I hope the cat has not found it or I will have to spend another 2 hours rolling it up again 8-|

Pain, pain go away........

And preferably don't come back another day!

My pain is getting very bad and even with strong painkillers does not subside much.  A lot of it is my own fault.  Doing the craft with the children at the tea time club is a killer as I stand too much, but its not possible to sit down and be of any use to them! I am also having problems hearing the children as there is a lot of noise, I struggle to hear speech at the best of times and its not really fair to the children I like doing it, but always pay for it and I don't want to let anyone down or feel that I always have to give things up :-(  I have also had the Christening this week and walked more than I should, but did not want to go in my wheelchair, would have made me look very pathetic, especially with elderly relatives managing better than me!!

I have wondered if the vitamin D I have been taking could be making the pain worse, but all the evidence seems to suggest it should make it better if anything.  Its the last tablet today so will see if it makes any difference when I don't take them.

I have lost confidence in being able to do the stripy waistcoat at the moment, I need to speak to Barbara at Rivers Meet craft shop but she is only in Tues, Weds and Thurs and I will be there tomorrow for my monthly quilting class with Sarah so of course Barbara won't be there and I can't go in on the days she is there for a few weeks, wonder if I could write her a note or is that being too cheeky?

I need to get my quilting out and finish of the block started last month, hope I can remember what I need to do, I intended to do it straight after the class, but did not get chance and now its the day before the next class, where does the time go?

Started a Shaun the Sheep knitted toy last night, it was given to me ages ago for a present and I started it and made a mistake so then lost interest.  Decided to start again and got it right so far this time, its quite fiddly as its done on very narrow needles with fluffy wool.  Emily wants to know who it is for, but then said she wants it, I don't have any other ideas, she will probably expect me to have it finished by time she gets in from school, she might have a long wait.

Well writing blogs wont get the quilt block made either so I had better get on move on.