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 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.

http://www.dailymail.co.uk/health/article-2861107/I-d-CANCER-chronic-fatigue-syndrome-Woman-s-battled-condition-10-years-says-people-unfairly-labelled-attention-seekers.html

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.

Nothing Feels Right

I don't like moaning as I know many are in similar or much worse positions than me and they manage to get on with life and not feel sorry for themselves, but everything feels so out of sorts at the moment.  Anything I do be it essential, necessary or through choice seems wrong.

Take this weekend for example.

On Friday Rob was home early as he had to collect Emily from school as I was not well enough.  As I had bought a great magazine with lots of free from cooking ideas, so we thought we would try something for tea as we had a bit more time with Rob being home early.  Rob found a pizza recipe, but changed it without me me knowing, and it was horrid, no offence to him as he was trying to make it so that we would all eat it, my intolerances and Emily's fussiness are not easy to incorporate.  I was really looking forward to a nice home cooked gluten free meal :-(  But then I sound ungrateful as Rob had made the effort to make it, but I was annoyed that he had changed the recipe not knowing if it would work.  The Magazine has so many nice sounding things, but we are always so limited on time that we seem to eat the same small repertoire of uninteresting food all the time.  I have subscribed to the magazine for inspiration, but wonder now if I will just get frustrated by not being able to try them out either from lack of time or not have the right ingredients.  Again it makes me sound ungrateful as at least I do get a hot cooked meal each day, usually cooked by Rob who also has a full time job.

On Saturday morning I felt really awful, but needed to tidy up, I wore myself out doing that and ended up back in bed by the time everyone else was up and ready to do things.  In the afternoon we went to the cinema, I found it difficult to hear even though its really loud, too loud from a noise point of view, but not clear enough and I had no idea what the film was about, it was a kids film! Glad that I have a CEA card and get concessions, so had not paid full cost for us all.   It was very busy at the complex we went to as it has many other attractions so getting in and out with a wheelchair is difficult.  Being in the wheelchair when busy means you get walked into all the time and you are on a level with a sea of bums, bags and elbows, not much fun!  Emily hates it too as she has to hold on and or get shoved out of the way to get passed people, she hates crowds.  We usually go to cinema Saturday or Sunday mornings think we will stick with that next time it is quieter, but it won't make the film any better!  The next thing we want to see is Cinderella which is released this weekend.  I want to take Emily during the school holidays, but can't get to the cinema without help so need to wait for Rob to have a day off, its so frustrating and makes me feel such a useless Mum and unable to have girly time with my daughter.  We also saw a trailer for Two by Two which looks good.  We have been going to the cinema a bit recently, but its still not an easy option as it is quite overwhelming, takes a lot of concentration and you don't really feel as if you are doing something together.  I still need to rest after doing something like that whereas others are eager to burn off some energy as they have just sat in the dark for 2 hours.  I should be grateful I can get out, but it feels like hard work and not good use of my family time.

Yesterday Emily was in a Gymnastics competition, I spent the morning getting her ready and then we had an early lunch as they had to be there for 12.30.  Again it was very crowded and sitting in a queue of bums, bags and elbows, nearly getting hit in the face by a squash racquet in someone's bag, people pushing past and bumping into me.  The event was quite disorganised and we got in late and then had to sit for 4 hours watching 50 children do the same routines.  I got very uncomfortable and the lighting was awful, spent some of the time in sunglasses!  Each child got about 5 mins in the competition the rest of the time they were sitting over the other side of the room.  Again family time, but not with my family.  Emily sat quiet and still for the whole time, so of course made up for it when we got home.  It was not a good use of my time and energy, all that time to watch 5 mins of my child.  everyone else was in the same boat and it must have been so boring for the children even though they were taking part.  Much of the time people were going in and out of the room and knocked into me each time, I was getting really fed up.  I need to stretch my legs and go to toilet, so asked Rob where the toilet was, he told me and I set off to find it, not far he said, felt like miles to me!  It was good that Emily had got through to the competition and for her to have the experience, but I hope we don't have to do it too often.  The class she goes to is for recreational gymnastics as we did not want the pressure of competitions and she just wants some fun and exercise.  The competition was an internal competition organised by a few of the sports centres in the area.  Emily keeps saying it was an international competition, just a bit of a difference there!

Along with this hectic weekend I have been feeling generally useless and like I should be doing more, being more productive, but I don't have the time or energy, doesn't stop me feeling like this though.  I stared up a page on facebook  mainly to post links to my blog and share craft pictures, but I have no idea why I feel the need to do these things.  Just need to feel I am doing something I suppose, but are people really interested, probably not.  Like the blog I spend time and energy writing and yes people do read it, thank you for that, but is it really just me having a rant, moan, show off etc?  Is anyone really interested in what I think or do?  Is it beneficial even if no one read it?  Why do I need to promote it?  Once it is written or posted it doesn't really matter how many read it and why do I then have to regularly check how many have read.  As I say whatever I do feels wrong even if its something I want to do.  I also started a conversation on Streetlife to find people with similar interest and issues, but again I am not sure why, its not like I have a lack of things to do.

Last week I spent a lot of time in bed reading as I couldn't manage anything else.  I enjoyed the books I read, but it felt wrong, I should have been doing other things, being more productive, so that of course then takes away some of the enjoyment.  I feel that if I am reading I should at least read something that is of benefit, like the child behaviour books I have lined up or the magazines that show me how to do things, but they all sit unread as that feels like hard work.

I like making and creating things and have so many things to do, but again the effort of starting it feels too much, but then I feel bad for not doing anything and not making a go of anything.  I feel like I should be producing lots of things as I am at home on my own all day, but I need to save my energy for school runs and household chores, even though I do get help with the chores.

I hate that I have to spend 2 to 3 hours a day in bed even on a good day, again that feels so wrong and that I should  be doing something constructive with my time.  I have my quilting class on Friday and want to do some more on the quilt, I haven't done any since the last class I went to in January and I so want to get it finished and move on to the other ideas I have, but by the time I am all set up it will be time to stop.  I haven't picked up any knitting in ages, have many works in progress, but never seem to finish them so it all feels a waste of time.

I have many card ideas I want to make, but again the effort of getting things out and starting feels too much.  There isn't room to leave things out and about and just do a little as I fancy.  Again so many ideas, but not enough time and energy and then I end up rushing at the last minute to get something made for a specific date.  I used to make and sell cards and feel that I should be able to do this, but that was when I had all day on my own, no Emily to sort out and school runs etc and even though she is out of the house most of the day when she is in it is energy intensive for me and I need to be able to manage that, so can't use my energy in other ways.  It is so frustrating.

I spend quite a bit of time on Facebook, but get frustrated with people having a social life and holidays etc, to me they are very difficult, also the expense and family commitments prevent these.  Actually I am not really a sociable person, but that because it requires a lot of effort from a physical point of view and a hearing point of view, so if I do go out I tend to sit there whilst everyone else chatters.  Yesterday Rob spent more time talking to the woman sat the other side of him than to me and he didn't know her!  I have not had an evening out since a theatre trip just before Christmas and again that doesn't really feel like you have been with someone as you are sat in the dark watching something and I get so uncomfortable and tired, again I am not sure I really enjoy it.  Holidays, I would love a foreign holiday, but the hassle and expense mean we don't even try, but it would be nice to see a bit of sun and to give Emily that experience, I feel that my limitations and lack of income have a big impact on Emily and we cannot give her the life and experiences we would like to.  She does many things and certainly does not go without, but its not what I want for her.  But then I sound selfish as there are many people who can't afford what we have.  I think whatever you have whether it be a little or a lot you always want more and of course want the things that are denied for whatever reason.  Emily has spent half the weekend telling me she wants me to get a baby!  Ok where do I go for one of them, the Supermarket?  Joking aside though, this upsets me as I would love another baby, but for several reasons can't have one, but how do you tell that to an 8 year old.  There are many things I can't do, but sometimes I really push myself and can do them a bit, so how do explain the difference between this and really can't?  Or no you can't have a biscuit now, but another time you can have a biscuit?

Another thing that came up on Facebook was a reminder of the changes to the DLA benefit.  It is changing to a benefit called PIP and many of us that currently get the higher rate of mobility payment will no longer get it as the criteria has changed, so not only will we be worse off we will also lose our Motabilty cars, so bang goes our tiny bit of independence.  There is a petition going to stop this form happening, but I doubt it will have much impact and won't get as many supporters as the reinstate Jeremy Clarkson campaign, just shows where the countries priorities lie!

Well I must stop now I am feeling really awful and have more than used my energy quota typing this, was it worth it?  I have no idea?  Nothing feels right.

Down again!

Feeling rather down again today, had a busy day yesterday. Does anyone else feel that everything is their fault and that people have a low opinion of you even though you try your hardest, its never good enough? I went out to the car this morning and found it unlocked, started telling myself how stupid I was and how it was all my fault and I should be more careful etc, etc, then I thought hang on a minute it wasn't me who took the car out last and I had just assumed it would be my fault. I know if I mention it to Rob he will blame someone else or just laugh. My oven stopped working last night, blew the fuse and now won't work at all. For ages the light hasn't worked and Rob broke the casing trying to change bulb, so we just left it, but I decided I wanted a new unit so the light would work, so Rob took out the old one to check which we needed. So next time we use the oven it blows the fuse, so I am blaming myself for wanting the light repaired, which is now on order and will probably be a waste of money and cost me a new oven instead. I was brought up being told a lot of things were my fault and now I just blame myself or take the blame for anything and everything, but I feel so useless. I am playing the victim? Guess I am, but can't help how I feel. I went to the well being group yesterday, its supposed to make me feel better, but I come away thinking I shouldn't be there as everyone else has worse things to deal with than me and I keep quiet about my own issues as they don't seem important.

I do get some things from going to the group, but the exertion of it is difficult and then I had unexpected demands on my time and energy last night making it more difficult. I tend to take other peoples issues on board and want to sort them all out, but don't think my issues are important. Being with a group of people with all manner of issues also sparks issues of my own and then because I am worn out today and can't do much to take my mind off things I dwell on them.  Sitting here is not good use of my time and energy, something else to beat myself up about, especially as I am having my hair coloured later which always makes me feel ill and Emily is having a friend for tea at the same time, not good timing, but can't let Emily and her friend down because I choose to do something for myself that I really shouldn't be doing.  I know I will feel even worse tomorrow and will just want to curl up in bed, no chance of that though as Rob in London, its cleaning day (for the cleaner not me!) and then Rob out in the evening, life carries on no matter how I feel.  I am struggling to type getting all the letters mixed up so I do hope that some of this makes sense.

At 5 ways yesterday we again talked about seeing positives and making small steps towards goals. Everyone else seems to do so well and makes progress, whilst I feel stuck.  I really need to get back into the seeing positives, it was useful.  I read Gratitude in short supply a column written in Psychology Today by Toni Bernhard an ME sufferer who writes about her experiences and has written books too.  Also read What is wrong with me another of her articles and they are very good and I can relate to them, just need to put into practice.

Its difficult to have a positive as there always seems to be a but.  I went to 5 ways yesterday, but it was difficult and I am suffering for it today.  I was able to take Emily to Gymnastics, but I shouldn't have done, but had no choice she couldn't have gone otherwise and I can't let her down because I did something for myself.  I got some things discussed with Rob, but it meant I was later going to bed and then didn't sleep.  What looks like a positive always has a consequence for me, its tough, but I know I should be grateful that I can do some things even if they do have consequences.  If I always thought about the consequences I wouldn't do anything, but I know how things affect me and choose to suffer the consequences.  Is that right?  Is it the best thing for me and my family?

I want to get out of this horrid depressed rut, it doesn't help me or my family, but what can I do, like everything else I feel awful, but there is nothing much than can be done, apart from me pulling myself together and getting on with things regardless.

I was wondering last night why I write this blog.  Yes its an outlet, but many things go unsaid as I don't know who reads it.  I am not normally a public person, so why write something that can be read by anyone who has the internet?  I feel that people don't listen to me, is this a way of just sounding off to anyone who cares to read?  I don't get feedback so have no idea what people think.  Did I hope that people were going to come along and make things better for me?  I wanted people to understand better, but I doubt that happens and why should people need to understand it doesn't affect them so they don't need to think about it or worry about it.  If I find it useful that should be all that matters, but again is it the best use of my energy?  If I don't type or write the issues bubble round in my head, if I type or write I get more tired and dizzier and feel generally rubbish so is it helping?

As ever I feel I am neglecting my craft stuff.  I have stitched a card which I need to finish off and I have another to start and really want to get the dolls knitted for Emily for Christmas, but don't get me started on Christmas, it should be banned for people with ME, to much to do, too many expectations, totally fed up with it and more than a month to go.

I need to have a few priorities instead of a huge list of things I want to do and realise that I can't manage lots of things and when I  have a busy day accept that I will feel bad and not try to do much the following day, but it never happens like that and I keep trying to carry on and set myself up for a fall.  How can I expect people to recognise my limitations if I don't accept them myself.  Why is it wrong to rest when I need to, why do I feel I have to prove something.  I am ill, tired, weak, dizzy, but the pressure piles on every day, will I ever accept that?  Of course what is a busy day for me is a fraction of what other people do, so even a busy day feels like a failure.  Oh dear another moan, but maybe I can get a bit of rest now.

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.