Friday, 27 July 2012


OK, so we've established I have issues with anxiety and depression. I am also extremely emotional. People hug on TV? I bawl my eyes out. In 60 years time my husband might die? I bawl my eyes out. I cry. A lot. With tiny triggers.

I also take on other people's emotions. We recently had huge family drama in my father's side of the family. I wasn't just feeling my emotions, but I could intimately feel the emotions of every person involved. Not only that, but they weighed me down and limited my life. You know the phrase about walking in someone else's shoes? For as long as I can remember I have been superglued to everyone else's shoes. I remember in my teens, when my youth leader asked me what I thought my gift was, I said empathy. She replied that very few people were truly empathetic and I was probably just feeling sympathy. It's not. But it's not a healthy empathy either. It is an all-consuming out-of-control empathy.

I mentioned the other day that to help build myself up I have cut off things that pull me down, such as the news and negative people. I have also tried to build up barriers to other people's feelings. It's not that I don't care, it's just that right now I can't care.

My sister had a miscarriage over the weekend, at about 10 weeks. Normally I would be distraught and it would have "ruined" my day. I would be tearful and struggling to cope. As it is, I just accepted it as news, sent love and hugs, said a prayer and got on with the wonderful things we had planned for today.

Part of me feels incredibly uncaring for not joining in the grieving process. But I can't right now. Right now I'm dealing with the contents of my head, and all my own issues. The miscarriage, as awful as it is, is their life, and their emotions. I do not need to be in their heads and feeling their emotions. It's not my life.

One day, maybe in months time, maybe in years, I hope to be feeling again. One day I will, once again, embrace the empathy I feel... But it will be in a healthy way. It will not be all-consuming, and it will not be a strain on me and those around me. One day, because I have learnt the limitations, my empathy will be able to touch people's lives. But to reach that point, right now, I have to control it, and focus on my life, and my healing.

[Written earlier this month, I just delayed hitting post!]

Thursday, 26 July 2012

What Is Saving Your Life Right Now?

Before I can answer this, I need to go back a step. Or two.

Over the weekend we did too much. Way, too much. As in, Sunday we went up to the caravan for a day trip. Monday, which was supposed to be swimming followed by rest, resulted in going to B&Q and me reaching a point where my legs couldn't hold me up any more. Tuesday was somehow ok... So we did Way Too Much again. But, it was a grand day of fun. But then yesterday... Oh, yesterday. The only useful thing I did all day was help get the washing out in the morning. I couldn't get myself food, close a window, anything. Mr had to pick up everything for us, and look after both of us. I couldn't even manage to follow a TV programme, and it was tough. Today has been much better, and I even did some art. Aaaaand we're getting help tomorrow. So things will be ok.

So. What is saving my life right now? Well, I could give a long list of gratitudes about the wonderful things in my life, but I just want to focus on one: my husband.

Mr has picked up all the pieces of broken me in the last day or so. He's sorted laundry out, and made sure I've eaten food. He's looked after the bunnies and carried us all through. He's held me as the tears have flowed, and even held me through my anger.

I read this the other day. I'll be honest, the first thing I did was go and give my husband a massage. Because I know he loves them. And because I wanted to say thank you. The post talks about that accepting love. That's what I have found in my husband. Mr's love for me is Christ-like.

Even when I am screaming, he will take me in his arms and hold me.

When we were in the swimming pool and he challenged me to go underwater for the first time, he talked to me about the power of fear and faith. Then he held me, his strong hands promising me I wouldn't drown as I dunked under, and bringing me securely back to the surface. I had complete trust in him.

Mr has taught me positive thinking.

Mr believes in my art.

Mr will hold me when I despair over our life... Benefits, thrush, ME, sex...

And he will lift me and give me hope. Hope for a better life. But also acceptance in this. Fun, freedom, laughter.

And if you don't know me, it sounds like my focus is on my husband and not God. But God is showing love to me through him. God is giving him the strength to keep giving when he feels like he can't. Without God, our marriage wouldn't be the fortress of love which has been built.

The love and care, shown to me by my husband, gifted through God, is what is saving my life, right now.


I'm lying here crying through sheer jealousy. Watching and reading about people, other artists, going out there and making their dreams happen. Coming up with new business ideas, painting everyday, social networking to find contacts and commissions. I'm not even well enough to make sure me and Mr eat right now. I am so jealous of people who are just able to get up and do. So jealous.

Sunday, 22 July 2012

Too ill.

We both lie there. In each other's arms. Tears rolling down our faces. Desperate. Longing. Too ill.

Thursday, 19 July 2012


The concept of ME sufferers just need to exercise is ridiculous. For a non-ME-sufferer, if they are unfit, yes, exercise. It will do you wonders. But if you've got ME? Oh no. A body afflicted with ME works somewhat differently to a healthy body. ME causes extreme fatigue, it zaps energy. ME tricks your body into thinking you're well enough for something, and then (as a delayed response) will crash later on. Exercise makes someone with ME so much worse.

However. When you have been ill with ME for a prolonged time, one gets muscle wastage. I am very weak, and my muscles are quite pathetic. Just one example - if my head falls back, I often cannot lift it back up without help from someone else.

I have felt small percentage improvements in my health over the last couple of months, but I know that it is going to be difficult to fully recover when my muscles are in this bad a state. I need to strengthen, for example, my back muscles to be able to sit for longer, even if my ME improves. I also have quite an untoned body, having not been well enough to exercise in many years, and I wish to change that.

I suffer from horrific tension headaches. Since no doctor has even been able to help me, on a friend's suggestion I started doing neck exercises. I might have been doing them as long as 4 years now, and over that time I have greatly increased my endurance (e.g. I started with one headroll, and now I do several as part of a routine).

I suffer from terrible back pain. Again, no doctor has ever been able to help me beyond suggesting physio, which I am not well enough to do. I own a gym ball, and began by just sitting on it for 30 seconds to help my core muscles. Then I looked online for simple back exercises to help my upper back. I started doing them, on a small scale. After several months my back pain is... Well, I used to cry everyday over the pain. Now maybe once a month, max.

My legs are weak. And I know that the squatting position is great for giving birth. So earlier this year I started attemping 1 squat every other day. To start with I could barely squat at all. Now I can do a proper squat (with a gym ball) most days. And if I am in the swimming pool I can do 2.

I feel uncomfortable with my upper arms. A few times a week I have started lifting a tin of beans, twice, with each arm. I've only been doing that for 2 weeks, but I know it's a start.

So now, I have a small daily (by daily, I mean, on the days that I am able, about 4-5 times a week) stretchercise routine.

I start with 3 back exercises on my gym ball. Lying on my back and relaxing, which I do for a minute or two. Kneeling and stretching forward with the ball, which I can't do for long at all because of arm pain. And lying on my front on the ball, which again I can't do for long because of chest and neck pain. But it's something.

Then I do a single squat onto the ball or down the wall.

Then I sit on the ball (good for core) and I do my neck exercises. Approx 3 breaths each with my head forward, back, left, right, looking left, looking right, and rotating. Then I rotate my shoulders 3 times each way.

I then lift my tins. And if I am having a really good day I also lift each leg and straighten it whilst sat on the ball (although this is often still too much for me!)

A healthy person will think that each bit is so small - especially as when I started out, for example, I could only sit on the ball very briefly before resting... But then I look where I am now, and it's so much improvement!

I have found the best way to rebuild my body is by tiny tiny regular steps. For example, once a day going on tip toes for one step. It's so small as to be insignificant, but after a few months you may manage two steps, then three steps... It's building up endurance and muscle. And when you have ME you have to start with a tiny tiny step, because you can't suddenly run again and expect to be ok.

And then there's passive stretchercise. Mr has only recently been able to sometimes stretch his ankles (a major area of pain for him) by himself. Before that, all his stretchercise was passive, with someone else moving and stretching his ankles, legs etc. When we saw a physio, she said passive exercise is either bad or has no benefit, and refused to help us. I strongly disagree. If someone is so ill in bed that they can barely move by themself, then someone keeping their body moving is going to make a huge difference to their mobility and muscle wastage. Maybe not by a healthy phsyio's standards, but definitely by an ME sufferer's standards.

Saturday, 14 July 2012

I lied.

There is an attitude within the Church today, where if one hears a fellow Christian no longer attends Church, then they must be fallen. Heck, I once thought like that.

Today, I met a couple of people from my old Church, and they asked me where I went now. I lied, saying me and my husband occasionally visited X Church, but we often weren't well enough. I had to say that, to satisfy them. So they didn't feel like they had a rescue mission on their hands to bring me back from the "dark side".

I already have people in my life who think I have fallen astray because I no longer attend Church - if anything, I have a better relationship with God than ever.

Up to here, I have used the word Church to refer to that building at the end of the road where Christians gather. That is merely a Church building.

Real Church? Where two or more people are gathered in God's name. That's me and my husband, that's our marriage.

Church is there to bring Christians together, to outreach to the world. Church is there to encourage, uplift and inspire. To worship together. Church is there to teach. Church is there for debates, and to help those in need. And yet, I have struggled to find that in a Church building - I have found that in the people around me.

In a Church building I feel hurt, I feel pain. In a Church building I feel lonely and out of place. I am misunderstood and neglected. I feel uncomfortable.

I have found Church in my marriage. I find Church in my everyday life. Not just something that happens on a Sunday. And I have found it at a level which works with my health. Yes, me and my husband aren't well enough to attend a Church. After our last visit there I nearly had to take my husband to A&E as the sitting up made his back so bad. [Ironically the service that day had been reaching out to people in need in the community. Obviously, because we had pushed ourselves to attend the service, we can't have been in need.]

The Church building lacks debate. It festers indoctrination, bringing a generation up with beliefs they don't understand.

Breaking free has allowed me to think for myself, make my own decisions on right and wrong and be responsible for my own beliefs. I have found out so many things that I have been told are in fact merely tradition, and they have no mention in the Bible.

The Bible! Christians think that stepping away from the Church building equates to stepping away from the Bible, worship, prayer… Not for everyone. My husband and I read the Bible. We pray. Together and on our own. And worship, man, worship is every moment of our lives! Worship is waking up and knowing that whether or not I can move from bed doesn't matter, because God is amazing and has given me this day and this life. Wow?!

Attending Church every week won't help me bring anyone I know to God. But loving every single person I meet might make a small difference in this world. Stepping away from Church has enabled me to have a relationship with Jesus rather than being a Christian.

My husband and I serve each other, as partners and through love. We may not be helping the community, but without each other's support we would need carers. We encourage each other to pray, to love, to worship and to read. We debate, oh how we debate. We challenge each other's upbringings and beliefs with our own, and with other peoples. We open our minds to see things from other angles, and we accept what the Church struggles to: the disabled, the depressed…

I may not attend a Church building, but my relationship with God? Amazing. When my husband and I had no where else to go, we found our own Church. Just because it's just the two of us, and just because we don't have a spire, does that make it any less important than the one at the end of the road?

Thursday, 12 July 2012

Coping with Depression

Before now I've talked about both positive thinking and coping with anxiety. In many ways, this ties in with both. I find that doing the following early in the morning can set me up with a really good mindset for the day, but also calm me down if I am feeling overwhelmed by the bad stuff.

Basically, it's something I've called, I love that I... That's the complete guidelines. Don't set yourself a number of statements to make, just start writing, and see where it goes.

I know many people who do similar things about what they're thankful for, but I find I can go on forever with lists like that, being thankful for oxygen and grass and just... everything.

I love that I... is a bit more personal. Bringing the focus to you. And because there's no guidelines over how much to write, it gives you complete freedom. You can only think of one thing? Great! Focus on that. You've reached 50 and are still going strong? Wonderful! But don't get bored and caught up in it. It doesn't matter if you don't include it all right now.

I post my I love that I... on my private blog, but here's some examples of what I write for myself - hopefully they can inspire you!

I love that I feel so beautiful.
I love that I never go hungry.
I love how fresh the rain makes it feel.
I love that me and my husband are so happily married.
I love that we can afford takeaways when we need them.
I love that there is hope.
I love our bunnies <3

And what is amazing, is that it doesn't matter when you do it. Multiple times a day, or even just once... Obviously if done regularly it will have a bigger impact on you, but just stopping for a moment to think what you love is a wonderful feeling. You may notice I don't quite stick to the whole phrase for all of mine! And that's fine. It's the concept that's important.

Go forth and love things!

Monday, 9 July 2012

Something to Help Anxiety

Over the years, by myself and through talking with others, I have found ways to try and deal with various aspects of illness. Talking it through with my husband and praying together is the ultimate calmer for me, but when I am alone it is more difficult. I just want to share one of the techniques I use to try and deal with things that make me anxious...

1. Write down what is making you anxious.
2. Write down why.
3. Write down the worst case scenario if something does go wrong.
4. Write down what you could do or what could happen to avoid the things making you anxious. What precautions can you set in place? How can you deal with it?
5. Will worrying really help this situation?

Don't be afraid to write as much detail as you need.

I'll give you an example. I need Mr to phone our car breakdown cover company because we haven't received the paperwork from them. This makes me anxious because it's a phonecall, I have to remind him to do it, and I don't know what will be said or what will happen - basically it's out of my control. The worst case scenario? He doesn't phone. We break down. We can't get their phone number (unlikely)/they won't come out to us because our registration has gone wrong. We simply find someone else to come help us out. Yes, it might be costly and involve a long wait... But it's unlikely to happen and it is not the end of the earth. As long as we have a phone and charger with us we can always get their phone number. And if they don't respond we can contact someone else. But hopefully it can be avoided all together if I email Mr asking him to make the phonecall. Worrying isn't going to help, and if it doesn't get done it is not the end of the world. The best that I can do is remind Mr, and then it is out of my hands.

It really helps me :)

Saturday, 7 July 2012


Anyone who knows me will know I'm not the most positive of people... I like to think of myself as realistic, but it probably is a bit more pessimistic!! Not helped by sarcasm, although I'm not as bad as I used to be. If someone asked me if the glass was half full or half empty, I would reply that it's either twice as big as it needs to be or only working at 50% efficiency... Yeh.

Anyway, to help deal with the extreme amount of negativity in my head, Mr has been trying to encourage me to think positively, and has been using CBT techniques with me. Amazingly, he hasn't given up on me. Amazingly because I haven't exactly responded in an ideal way at times!

There is a concept that the negative thoughts (as an example, "I am useless") are lies, and that therefore they should be replaced with positive thoughts, aka the truth. However, I have responded to this that saying the positive thoughts would be lying to myself... Masquerading what I see as the truth. Using the same example, when Mr has told me I am not useless, I have been able to give him many reasons why I do believe, in fact, that I am useless. And if I tell myself that I'm not useless, it is a lie, and I am deceiving myself. Mr has always said this is just a reflection of how deep my negativity runs. You really don't want to know the depths to which this concept of positive thinking has been debated... But it really, really, has!

So, we've been together over 5 years now, and he has been trying to help me with these issues for most of that time. Amazingly, over the last couple of months, there has been progress.

It really is a surprise to me. My depression has been better of late (thanks to homeopathy), and my anxiety is improving (dihydrocodeine really does help my head). Even my ME has improved a percentage or two... And I think the, dare I say it, "positive thinking" has helped me cope in situations where I would otherwise have broken down.

For me, it tends to be in 3 forms...
1. When something is causing negativity, stop it or step away from it.
2. If I am speaking something negative, is it really true?
3. If a situation feels negative, can I view it from a positive angle?

For example...
1. I have cut myself off from all news and current affairs, because it pulls me down, deep. I have even unsubscribed myself from mailing lists about the latest benefits news. If people on Facebook regularly post negative things, I hide their stories. (Note: I have friends who are severely depressed who I can handle, but negative sarcasm etc I cannot.) Sometimes when I am cleaning and Mr is too ill to move I joke that he only married me to look after him, which I know is not true... But if I say it too much I believe it... I have to stop saying it and making jokes like that.

2. If I am telling myself I am useless, or soemthing similar, I stop and think. Why am I saying that about myself? Why isn't it true? Or if it is true, is there a reason? Can I change it? Positivity.

3. Just looking at things from a different perspective. For example, today I had managed to pop into Lidl, and there were two checkouts. One had a longer queue, and the second a shorter queue. But the second had a basket on it, making it look closed. Instead of asking, I went to the longer queue. Someone else came up, asked, found out it was open and went through quickly whilst I was stuck in the longer queue... I wanted to beat myself up... But instead was able to learn the lesson that it's ok to ask, I won't get hurt, and I don't need to be scared - maybe next time I'll be able to handle asking. But it's ok I couldn't today, and it's also ok if I can't next time.

Thinking positively won't make my ME better, obviously. But it will help me deal with my depression and anxiety. There are many situations where I would naturally panic, and become quite ill. There are many things which trigger overwhelming anxiety and depression. Harnessing my thoughts and directing them can help manage this, and help my brain heal itself. Not having huge mental health problems will help allow my physical body to heal, and also enable me to have children one day.

I was very anti-positive thinking, and in many ways still want to be! But I am seeing great changes in simply managing my thoughts better, and identifying my triggers.

Friday, 6 July 2012


I had some positive news!! My ESA result was pretty late arriving, but then I had a very long form and there were 2 bank holidays! It ended up that Mr phoned them for the result, and the letter arrived a few hours later! It removed another morning of the horrific anxious suspense though, so it was worth it.

So yes, the good news is that I was awarded ESA in the move from IB/IS :) I can't believe I scored enough points, but it's wonderful. I'm hearing so many stories of people who aren't as successful :( However, just knowing I have to attend work-focused interviews has made my anxiety worse, so we are appealing that I should be moved to the support group under the exceptional circumstance rule: Regulation 35(2)(b) states that, under exceptional circumstances, someone can be found to have limited capability for work-related activity if they "suffer from some specific disease or bodily or mental disablement and, by reasons of such disease or disablement, there would be a substantial risk to the mental or physical health of any person if you were found not to have limited capability for work-related activity".

I find the difference in phrases between the two groups confusing though - the work-related activity group means you have "limited capability for work" (i.e. you are not well enough to have a job); and the support group means that you have "limited capability for work-related activity" (i.e. you are not well enough to attend work-focussed interviews). Talk about confusing!

Anyway, I have lots of posts in my head, so I will try and share them soon...