A Romantic Night

[This post may contain adult concepts.]

Have you ever had a romantic night? I've always wanted one. Consecutive events. A meal out followed by time with my husband. Both, in one night.

It probably sounds normal, to the average person. To a healthy couple. It's something we can only dream about.

We showered on Monday, so we could recover from it in time for a meal out.

Mr has spent the last week in bed all the time (he normally spends part of the day on an armchair), just in the hope... In the hope it could be enough... Enough rest. Just enough rest. That tomorrow, maybe, we could have a meal out, and then come home and enjoy each other.

Possibly.

Just the fact he's resting to try and make it happen means so much to me. He knows how desperately I long for the romantic nights healthy people can have.

Maybe tomorrow, as we celebrate our 2 year anniversary two and half months late, we might actually manage a romantic night.

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.

Jealousy

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.

Stretchercise

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.

Positivity

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.

Sex and M.E.

WARNING: This post contains adult concepts.

I have had to do a lot of thinking over whether to post this, and then whether to do it from a better time or a worse time. For now, it's going to be the latter.

Programmes like "The Sex Education Show" on Channel 4 have talked, briefly, about disabled people's sex lives. About them being able to have sex. That, even if they for example, are missing limbs, they can still enjoy sex. They've talked about aids to help in such situations, too. What they haven't covered, are disabilities which have a slightly different effect on one's sex life.

In all honesty, it's like most things related to disabilities. If fatigue isn't an issue, then your possibilities seem almost endless. But add fatigue to the mix and possibilities are extremely limited, and there is simply nothing to help you. If just one of you is affected by extreme fatigue, there are still solutions. There are positions or equipment which enable the healthy person to do the hard work, so the fatigued partner doesn't have to.

But what about when you are both fatigued? When you are both too tired to move from a lying down position. When your arms and legs aren't strong enough to support you? When you don't have the strength to enjoy the other's body. Or even worse, when you're touch sensitive? At that point even cuddling can be impossible.

There seems to be no answer. You can enjoy each other emotionally, spiritually, intellectually. Most of the time you can hold each other, and at least feel the other. But actually having sex - and enjoyable sex at that - can seem impossible.

Hopefully, at times, you both have a good day. You've managed to avoid hospital appointments for a few days, and you're both dosed up on your painkillers. Both partner's "best time of the day" occurs simultaneously, and you can have some fun.

But what about if one or both partners have some mental health issues too? Thankfully my husband's learning disabilities have no effect on our sex life, but my mental health issues most definitely do. They say that for a person to enjoy sex, they need to feel physically and mentally healthy. I haven't experienced that state since I was 10 years old! What hope do I have?

Depression… It makes it difficult to be in the moment with sex. It stops me from letting go, and just puts me in the depths of negative thoughts. How can great sex be experienced when your head is in that place?

Anxiety… It makes just the concept of having sex terrifying. It reminds you of every failed attempt, and thoroughly puts you off.

Stress… It stops you from being in the moment, and instead allows your 5 page long to do list to run through your head on repeat.

ME… Fatigue so intense you simply don't have the energy. Pain so intense you can't move. 10 months of thrush leaving you red raw. Two bodies that struggle to simply climb the stairs - what hope is there?!

Although, sex is the best painkiller for my headaches. I guess because, no matter how difficult it is, it relaxes me and relieves the tension. That's why we laugh at the "headache" excuse women use. I turn to my husband and say, "I've got a headache, can we have sex?"

Both being well enough… That's the toughest thing. You're balancing two lots of ME. Trying to make snippets of health coincide for long enough. Knowing that if we follow through, we won't be well enough to do anything else - including making dinner.

I know I'm not alone. I've spoken to at least one other couple where both partners have ME, who are trying to find a solution… A way for both partners to be well enough and to enjoy it.

There needs to be more support for couples where both are disabled - whether ME or something else entirely. We may be somewhat rare, but we still matter. When the only answer to better sex is to be physically healthy and mentally content, there needs to be an option for those whom that isn't an option.

This Blasted Illness

I can't say I'm coping very well atm. I've started taking dihydrocodeine regularly because it helps my anxiety, and I pray I don't get addicted.

I had my ESA medical on Friday. Thanks to Benefits and Work I was able to get it recorded. The day before (because of the need to set up the recording equipment) my time was moved from 3pm to 1pm. We arrived 12:50 ish, and weren't seen til nearly half 2... Turns out they now read your ESA50 before you go in, which was quite surprising. And of course took the guy a long time with 30 pages! It was good though, as it meant he understood a bit, and was able to ask relevant questions. And (maybe just because of the recording?) he treated me and my husband with respect, which was a nice change from all the Atos "practitioners" Mr has seen. I was even in the same room (and requested the same chair!) as my IB medical back in 2008.

As for how it went? Well, it all depends upon the tick boxes. I'm hopeful, but you never know. I need to be in the support group though, so even if I'm put in WRAG I'm going to appeal :( I cannot handle the interviews etc, they will kill me. I would say if I don't kill myself first, but I could never leave my husband.

My DLA tribunal is tomorrow, which is scary. At the end of the day, it's not the end of the world if I lose. Our finances stay the same. But I fit the criteria, and I will find it very difficult to accept if they turn me down. It's scary. I just wish the medical profession would offer me more support.

My head problems have got worse with all the benefits madness. My anxiety has got worse, my anger is a whole new level. Just really struggling.

I've been on several new homeopathy remedies this year, but none of them are quite helping me enough, so I don't know how far we will go. I only know that if I am taken off everything I will crumble.

We keep discussing proper anxiety medication. I may be nearing that point. I want to find an end to benefit battles and see if I can improve by myself. But if I can't, or they continue, it may be time.

Mr commented that it's adding years to my illness, fighting all these battles. I can't handle the words. But it's so true.

It's been 12 years, and yet I still can't handle it. We should be earning a living, buying a house and having a family. We shouldn't be going to court to get money to live because we're not even well enough to cook for ourselves. My OCD is becoming more apparent too, as we become more dependent on carers and I can't let go. I feel like I just need to shake myself and all my head problems and physical problems will go away, but they won't. I know I will be healed one day, but right now I can't accept being ill. I'm so angry.

And yes. 10 months later, I still have thrush. I have started doing gentle back stretches on a gym ball though, and I think it might actually be helping my back pain. There has to be hope somewhere?

A Story.

From the age of ten, all she has known is fatigue. Fatigue, pain, and so many other symptoms. She missed out on school life. On friendships. Her Birthdays echoed the resonations of another year gone. And her achievements were backed with "even though she was ill". She watched as others went off to university, to live with friends, and to explore the world. She met her prince… He knew the pain, fatigue and other symptoms too. They lived their own happily ever after. A time of needing care, of mobility aids before their time, and of mountains of paperwork merely to pay the bills. Happily, you ask? Well, they were in love, and they were learning to fly despite the weights pulling them down. They longed for the day they could have their own family and fulfil their dreams. Sadly, they live with a chronic illness with no cure, and so they wait...