My Health.

My health isn't just a list of terms such as ME, depression, anxiety, sleep problems, back pain and thrush.

My health isn't just the information detailed within my NHS file - just a list of what the drs see - and how they choose to see it.

My health isn't the list of prescriptions I try each year.

My health isn't the smile I put on my face when I try to hide how I feel.

My health isn't the thousands of words and hours of essay writing taken to claim the most basic of sickness benefits.

My health is what I have to live with TWENTY FOUR SEVEN.

This year will mark 12 years with ME. Today marks 6 months with thrush. I wish I could have a break.

A Small Snippet of Reality.

Before Christmas, the dr prescribed me codeine to try and help the pain. Within 48 hours I was insanely itchy, and had red patches all over my body, and I haven't dared go back to it. So, until I can get back to the dr, it's back to borrowing Mr's painkillers to get me thru the tough days.

The problem with painkillers, is that I push myself. Really push myself. And then crash for a couple of days. Christmas was hectic, and I've been crashing ever since. I know painkillers would help so much, but they would also cause me to continue pushing myself, and that just can't happen!

Last night was horrible. My crash came on really suddenly, and just wiped me out. I was lying in bed, shattered. Shivering, even though I don't think it was that cold. And just falling into this pit of self-loathing. My anger was immense.

I was too ill to move, and the feeling of cold was making it harder. I was too tired to do my thrush treatments, too tired to take my homeopathy, couldn't even reach for a drink. I couldn't move my limbs. And I hated myself for it. Hated myself.

In the end, my husband sat me up, clothed me in layers, and walked me to the bathroom. He got me a hot water bottle, and just did everything for me. He left me for a couple of minutes and when he came back I was a sobbing heap on the bathroom floor.

It was all made more difficult because I couldn't even communicate. The words he was saying wouldn't sink in to my head. Simple yes or no questions were greeted with "I just don't know". And I simply couldn't speak. Couldn't open my mouth. Couldn't talk. We're trying to develop a simple sign language for these occasions, but it takes time!

I hate putting him through it, I really do. It is so out of my control though, it's my ultimate crash, and they're so horrible. You're wondering what huge thing I'd done yesterday to cause it? I had a shower, and spent some time with my husband - the first time in nearly 3 weeks.

My body is broken.

My Experience: Homeopathy

I'm hoping to slowly establish a series on here of personal stories of treatment experiences... Some may be positive, negative, or just neutral. If you'd like to share your story on a treatment for ME/CFS (or any of the other illness mentioned in this blog), leave me a comment or get in touch :)

Many people have issues with the concept of homeopathy - mainly because of a lack of science behind it. However, you could say the same about ME! Many state that the positive effects of homeopathy are merely a placebo effect... I beg to differ.

I started on homeopathy when I turned 17. I had been struggling with severe depression (as a result of ME) for about 2 months, with milder depression previously. My GP offered me a referral to Child and Family (which didn't come through until 6 months later - if that's the treatment for severe depression I feel sorry for anyone else), but I requested seeing a homeopath.

We're lucky where we live, as the NHS has a homeopathy service. They are all trained doctors who can pick up on anything important, whilst also listening to everything about you, and treating you with homeopathy. They are some of the most patient, understanding doctors I have ever met, leading a very chilled practise. Today my new homeopath spent 45 minutes just getting to know me and learning about me.

Saying that, we nearly lost the practise this year, and I have fought hard to keep them. There are now less staff (my main homeopath has gone), but I am relieved that I am still receiving treatment.

I lose track of the remedies I have been on, but over the years I have been on varying strengths of calc carb and sepia for depression. Today I have just been changed over to silica - very scary to change when I've been "ok" for so long, but if it will help maintain my head further than worth a shot.

Initially, back in 2007, my first remedy transformed me. It built this wall up in my head between me and the depression. It was quite a high wall, and the depression couldn't reach me over it. It transformed my life.

When I get tired, or things get too much, the wall often doesn't feel high enough to keep the depression out. It's been more obvious lately with my relapse, which is one of the reasons we're trying something new.

The other remedies I'm currently on are sarcolactic acid (which helps ease the extent of my aches and stiffness), and pulsatilla (which I take mid cycle to ease my PMT, which can be very bad!)

Most of the remedies I've been on have made really positive differences to my symptoms. However, I feel that the remedies that haven't made a positive difference are the proof needed that homeopathy works.

A lesser example are the remedies that simply do nothing - for example I tried one or two remedies to help my nightmares a couple of years ago - they did naff all.

The main example would be early 2008. My normal homeopath was off ill, and one of her colleagues prescribed me something without taking my personality into account. (And now you're thinking what the heck does personality have to do with medicine. Different personality traits reflect different elements within ourselves, and we all react differently to different things.) I don't want to say what I was prescribed, because it might be the perfect remedy for someone else. But for me, I was in bed within a matter of days, and it took me months to recover. If it was a placebo, that would not have happened - my attitude towards it was no different from any other remedies I take. If anything, I've been more fearful towards new remedies since then. But it can't let you be put off homeopathy, as what's the difference between that and side effects of conventional medicine?

Yes, homeopathy can make you feel worse initially, but so do many conventional medicines. It's just a different route to try.

Of course for some people homeopathy simply won't help them. And there's certain illnesses where conventional medicine must come first. But most of the people I've spoken to who didn't find homeopathy helpful, tried one or two remedies and gave up. Homeopathy is about trying different remedies, to find the right one that reflects your symptoms and your personality.

It has transformed my life, and if it's available on the NHS near you, I really recommend just giving it a try.

Sat in the Corner

When you're out socialising, do you see someone sat on a chair at the side, looking awkward, and not participating?

They may well be rude and unsociable. They may simply not want to be around people.

But they may also just be desperate to socialise but completely unable to come to you.

Next time you're in a social gathering, look around you. Is everyone stood up, talking to each other?

Well, some of us can't stand. Some of us are forced to sit. And really, we should be lying down.

We may even need a wall behind us to hold our head up, as our neck isn't strong enough by itself.

We may be so shattered from just being out the house that simply thinking is too much.

Our anxiety may be crippling us to the point that just making eye contact scares us.

We may have spent so much time confined to our house for the last decade that we honestly don't know how to hold a conversation with someone, or have any knowledge of the world.

But you may be the first person (other than our carers and our GP) to speak to us in the last month. And we would love for you to come over. And we will try our hardest to communicate with you. We're sorry if it's not your normal standard of conversation, but it will mean the world to us.

Some rambles.

Wow, I have 2 whole followers... Thanks! Sorry I haven't written in a while. It's been in my thoughts a lot, but my thoughts have been so numerous and disorganised that writing them down has felt impossible.

I did too much at the beginning of November, resulting in the last 4-6 weeks being spent resting more than normal. One of the big things to have hit us as a couple has been that I've been too ill to cook for us. Thankfully this tied in with Mr being awarded DLA, and so takeaways have been an affordable option on such days. Without that, I honestly don't know what we'd have done.

There's been a lot about ME in the media lately (from news articles about how many school children could have ME, to The Food Hospital on Channel 4 saying they're just tired people who need to eat right). To be honest, I have generally ignored it. That might sound odd, but I haven't been able to handle it emotionally lately. Just coping with keeping me and my husband going has been more than enough. From what I've heard, ME has continued to be portrayed inaccurately, and since that only fuels my anger it's best for me to keep away. On top of that, the benefits cheats being publicised so widely and the hate campaigns against disabled people have left me scared just to leave the house.

Me and Mr have been constantly told (by people like the local physio who was nice but useless, to a back masseuse who hammered me until I cried) that we should exercise. Noone who has ever experienced moderate (or worse!) ME would say that. When you have to think twice about how you are going to eat tonight, or if you can reach to have a drink, exercising is just a joke. One person even told us it wouldn't make us worse! Maybe not for a healthy person, but a body suffering from ME doesn't work like a healthy persons, and the slightest bit too much can cause huge setbacks, as shown by my recent crash.

The long term tablets Mr was put on for his ADD (methylphenidate hydrochloride) appear to generally be making his thinking clearer, and easing some of his brain fog. The short term tablets (Strattera) are knocking his ME, even on the lowest dose, so are being used with caution. His dihydrocodeine is still helping his pain, but with starting to sit up again his back pain is showing up more.

I get to see an NHS homeopath again next week, which will hopefully help me get back on track. Spent the last year fighting funding issues.

We both saw a back masseuse this week. She really helped Mr, and is gradually bringing his back to a healthier state. I struggle with the slightest touch on my back, and so the work she was doing to me has made me quite ill overall. I knew it was too much but she didn't listen to me when I asked her to stop, and I wasn't strong enough to stand up for myself. As bad as my back and neck problems are, I won't be trying that again til my ME is much better.

I've also had thrush for the last 5 and a half months. With having ME, I don't think my immune system is strong enough to fight it. Today I was informed my dr will no longer prescribe me the one cream which has been easing symptoms... But she will prescribe me tablets I can't even swallow... She is convinced they will work, even though the other 7 prescriptions I've had haven't! So we went out and bought the cream (there's a reason we have free prescriptions though!) and will have to go in and fight for it on Friday. I think Mr will be doing most of the talking like he did today. I get too angry and upset. My anxiety is rough.

Sorry if this is bitty and doesn't read well. I set up this blog to document how difficult this life is, and have since discovered that it's almost as difficult to truly write about and do justice to.

A month later.

Can't believe it's been so long since I last posted! I have so many things I want to write about too, it just hasn't been feasible.

Mr took me on a surprise holiday, which was wonderful. But, of course, resulted in a double crash for us when we returned. The last fortnight has consisted of takeaways, packet meals, and laundry growing mould!

However, we've also had some really positive happenings! Mr got awarded higher rate mobility and lower rate care DLA, which is the biggest blessing. Also means he now has a blue badge, free car tax, and we're of course applying for free tunnel travel and the cinema pass. This makes such a huge difference to our lives! Especially as my legs have crumbled slightly, so less far to walk is always a bonus.

Mr also saw the ADD specialists at St Catherine's hospital this morning, and it has to be one of the most positive appointments we've ever had at a hospital. We didn't have to wait long, although the meeting lasted forever! The dr and the nurse were lovely and understanding, and we have 2 prescriptions for him to try, to hopefully help him both short term and long term. Yay!

In slightly sadder news, I've officially left the charity that supported me for 6 years, after changes took place (both in the charity and in my life) meaning it wasn't where I was meant to be anymore. It's weird looking to the future without it, though all my friends remain in contact!

It's half 1 in the morning, and I've already had a slight emotional breakdown tonight, so really must go... Remind me to keep you up to date with how the ADD treatment goes!

Please excuse the brief post.

I've had a crazy busy day and am insanely tired!

Mr had his DLA medical today. It went so much better than his ESA one! For starters, it was at home, so no dealing with taxis and waiting around.

The Dr turned up an hour early - I expected him to, so as to catch us unawares. Of course, catching people out only works when there is something to be caught out, and we have nothing to hide. We were resting in bed when he arrived, and my mother in law was doing housework downstairs - pretty typical day!

He was a nice man. You never know how much they take in, and afterwards you remember how much you didn't say, but at least we weren't treated nastily, and Mr was able to stop the physical examination when it got too much. (With his ESA medical he was told if he didn't do everything he would be called back again and again until he did.)



I feel angry and hurt by the Government and the media atm. They are discriminating against disabled people. People need to realise that one day they may become permanently disabled and dependent on benefits.