Fear of Pregnancy

I know, I know. Every woman fears pregnancy, labour, and motherhood to some degree. The thing is, my head and body don't work like most peoples, and from the research I've done, my fear approaches from a different angle.

Most women's fears are eased by the concept of doctors and the hospital being involved. But I am terrified of anything to do with the medical profession, and that is basically where this problem stems from.

And it is a problem. We've been wanting to start a family for a while now, and every 6 months we put it off again. And that's happened several times. We really were going to start trying... well, this month. But it looks like my head is going to get in the way again.

And yes, we do still have years ahead of us in which to start a family. But we always said we'd at least be trying by the time Mr is 30, and he's nearly 31. We're hoping to start a business up in the next couple of years, and I would really like us to have made it through one pregnancy without having to deal with work too. My mental health means that even if Mr recovered physically, I would need him at home to care for me, and it almost makes sense to let that happen whilst he is still physically rather ill.

But will having a baby around take up so much of our energy that it would stop us from recovering further? I know that's a risk we're willing to take.

So, what do I actually fear?

I fear doctors appointments. Getting Mr to phone up for an appointment, the anxiety leading up to one, going to the doctors, sitting there, waiting, talking... It is incredibly difficult for me.

I fear possibly having to stop my dihydrocodeine, especially as the weeks progress. Dihydro allows me to cope a little better.

I fear hospital appointments - leaving the house, the anxiety leading up to it, travelling, waiting, talking. Not knowing what is happening. Not being understood. They will just assume I'm healthy and normal. Not suffering from ME, depression, anxiety, and fear of them. My last appointment triggered suicidal depression again.

I fear not being understood. People not understanding how my body reacts to things. It's fine, we can just do a biopsy! Err... It's ok, you can have anaesthetic! No I can't, that will make me ill. Oh...

I fear antidepressants. I'm considering them because my mental health hasn't been great, but I don't know how they'll mix with pregnancy.

I fear my body shape changing, and not feeling sexy.

I fear more fatigue, more aches, more pain in my body. My back pain worsening... please no. I'm still suffering from itching, and I swear the steroid creams are causing more issues than they're helping.

I fear the fact that I can't exercise, and I can't always eat healthy.

I fear my body not being strong enough to cope.

I fear anything going wrong that could put me in hospital - I cannot go in to hospital. I don't trust them. I don't feel safe. They wouldn't let Mr stay and I cannot be on my own.

I fear having to be in hospital for the birth, or being rushed there. I can't. I would refuse it...

I fear having a lot of doctors/nurses/midwives around me. Looking at me. Forcing things. Not respecting me. Abusing me.

I want a home water birth, though I don't know how I access that. I know I will be judged for it. I really want to go private - especially to a birthing centre with a water bath, and where Mr can stay with me 24/7. But we're disabled - we don't have the money for that.

I fear tears. Stitches. Prolapses.

I fear ME relapsing, though I know Mr will help me through anything.

I fear the benefits people ever saying to us - well you can look after a child, why can't you work?

I fear being judged for starting a family whilst living on benefits.

I fear not being able to have sex for a while after labour. I need sex. My mental health deteriorates without it.

I fear not being able to lose weight afterwards.

I fear being too touch senstive to breast feed.

I fear my depression becoming worse - during and after. Especially as it is directly affected by fatigue. I fear this affecting my relationship with the baby.

I fear that becoming more educated about it all will just make my anxiety worse, because it's all so medical related.

I fear being in my own head.


Now, what I don't fear.

I don't fear Mr ever leaving me.

I don't fear labour in and of itself, because I know Mr will be with me. I just fear my body's strength, or lack of.

I don't fear Mr being affected by my body changing.

I don't fear being a mother.

I don't fear a baby being seriously ill, as I know we can deal with that.

I don't fear it having a negative affect on our sex life, we can deal with that.

I don't fear having a baby inside of me - that's so exciting!


I do want to be pregnant, it's just the depression, the anxiety, the medical profession... :(

I know God will not allow anything to happen which we can't handle. I know everything will be ok. But I'm just too scared.

We've decided to just see how things go. Not actively try, but not try not to, either. Just place it in God's hands, and trust it will happen when the time is right.

The difficulty is, that this feels a form of infertility to me. I do not feel able to have children - it's just due to mental health reasons, rather than physical reasons. I feel grief over this. And I feel inadequate - woman's bodies are built for this, and yet I can't do it? I feel so inadequate. I can deal with most women's fears, because I know me and Mr can get through anything. What I can't deal with is the stuff most women take for granted - the NHS.

When it's all in the head...

The first time I remember feeling it, I was 14. I had been physically ill for 4 years already, and I was going through my lowest time yet. A routine vaccination had brought what was left of my physical health crashing to the ground, and as I spent the months in bed, my mental health followed. Depression, at 14? It didn't last too long, if that can make sense. My physical health improved somewhat over the summer holidays, and a restrengthening of my relationship with God helped with the mental side. I couldn't tell anyone what I was feeling though. A combination of being "different", being ill, and having a faith had resulted in no close friends. My mother couldn't handle things, and I knew would stay awake for nights on end worrying if I told her. My father couldn't comprehend illness at all, and never had ears for his family. My siblings... I don't know. They were either distant or would tell my parents. I had noone to turn to, so I fought on my own.

Time passed. My physical health deteriorated again, and my mental health slipped with it, but I ticked by. I was 16, nearly 17. November. My Nan passed away, somewhat suddenly. I held it together to start with, turned to a couple of close friends I'd managed to make at Church. But after a day in school I simply broke. My father was in deep grief. My mother noticed this time. She knew I wasn't coping. All I knew was that my Nan had died, but she was healthier than me. She could sit for longer than me, and walk for further. She didn't have brainfog, she could cope with things. If she was healthier than me and had passed away, then where did that leave me? Why was I alive? I don't remember much from the months that passed, although I have an online journal full of thoughts from the time. I turned there constantly, and had friends online who cared. Friends who understood. I remember spending hours curled into a ball on my bedroom floor, just crying. I remember feeling stuck in a glass cube, being able to see the world but not reach it. Cut off. I remember thinking about death all the time. I couldn't get it out of my head. I remember wanting to hurt myself, planning suicide attempts, writing suicide notes. I don't think I would have ever seen it through, I really am not that type of person. People at school though, they simply couldn't understand. When I spent all that time off when I was 14, they were surprised I had returned - my so called "best friend" had told everyone I had died - it certainly makes for an interesting first day back. Now, at 16... I remember going for a meal out for someone's birthday. One girl said, "I just don't get how anyone can be depressed". I flipped at her.

A few weeks into this my mother took me to the drs. I have always been anxious, and she came in with me as ever. The dr could tell that I was bad - I had only seen her recently and she could see the difference in me. I asked for a referral to the local homeopathy service, as it had helped my siblings with their physical health, and she also referred me to the child and family mental health service. I was somewhat suicidal, you would think it would have been urgent... The latter referral came through 7 months later. My mother didn't know how low I was though, she didn't find that out until last year when she asked me. She couldn't have handled it, my family couldn't handle me. I was having crazy mood swings, I could go from the depths of depression to the highest of highs in an instant. But I had friends who cared.

In the January, I saw the homeopath. She started me on a remedy. Within a couple of weeks I was balanced. I was happy. I felt better, so much better.

Time went by. I lost a lot of my friends, they couldn't seem to handle this more normal me. My physical health deteriorated. I met my now husband. I left school. I got married...

And now here I am. Aged 22, nearly 23. I am battling so hard against my head. Before I met my husband, who was willing to take the time to understand this, and had been through so much of it himself, I had had noone to turn to. Bottling it all in has done damage. I still battle depression, including the self harm thoughts, the ending it all. I battle anxiety. I battle OCD. I am still physically ill, and spend a large amount of time lying down.

My OCD effects me in many ways. When I use a light switch I have to rub my finger over it to check it's fully down. When I lock a car I have to check the doors. When I lock a door I have to check it. I sometimes go back and do them multiple times, and when I have walked away I still think about it. I need to know what's happening when, but I cannot handle being held down to a commitment. I need things done in specific ways and specific orders. Because of my physical health, I have to allow others in to clean the house. It gives me panic attacks because things are moved. I am out of control and I cannot handle it. If there is a cupboard in a mess and someone else tidies it, I will mess it up again simply because I cannot handle the fact that someone else has moved things in there. If I touch one side of my face, I need to touch the other side in exactly the same way. If I get it wrong I need to do that second touch on the first side, and so it goes on, I have to fight to break it. I get stuck in counting rhythms in my head, and cannot find a safe place to end. I wash my hands constantly when doing things, and am obsessive about things such as raw meat in the kitchen. I remember elements of this, such as needing things even on each side, as a young child, but my parents didn't understand, didn't try to. There are things I hear which can become triggers to me. I have to work to stop them. When I hear other people's OCD things they make sense to me, and I have to work not to take them on as my own.

My anxiety is a big one. I have a constant fear of anything I do not fully understand, and when I am out of control. I fear going into a shop for fear of what anyone in there might say to me. It makes everything, especially drs and hospital appoitments very difficult. Some appointments worry me for weeks in advance, I feel sick, my chest is compressed and it is hard to breathe. My panic attacks and tantrums are more easily triggered. My bowels play up and my nose runs. I try so hard to fight it. I am driving tomorrow. I know it will be fine. I enjoy it. I don't want to worry, yet my body is without my permission. My symtpoms are flaring. I can't use phones as I can't handle talking to people, even seeing friends and family is difficult. I was at the hospital the other week for a vulva exam, and I had a panic attack because noone would tell me exactly what they were doing, I was meant to trust them - I can't! My health is so fragile I can't trust them to make the right decisions for me, they don't understand. I've always struggled with anxiety. At school I would be worried sick about certain lessons, about certain people. I hated school, I felt so scared.

So where am I now? I am still on various homeopathy remedies, which help various symptoms. I am prescribed dihydrocodeine for pain, which I take because it eases all my physical and mental symptoms. I am battling every day to overcome everything, but as my physical symptoms worsen, the fighting becomes too much. I have a husband who I can turn to with everything. Who supports me more than I thought another human could. I am trying to prepare myself for trying to start a family, and that's affecting my anxiety - I don't trust drs. But I feel hope. Having found someone who I can turn to when I want to hurt myself, or when I'm panicking because the shower I use at the swimming pool isn't available, or when I am screaming on the kitchen floor because I dropped a spoon, has made a huge difference to me. Having him speak positives over all the negatives in my head is slowly transforming me. Constant prayer and night time support has limited my nightmares and my waking visions*. There is hope for a future free from mental and physical health problems. They say X percent of people who have mental health suffer from it for life. Well I'm going to work to decrease that percentage, and be someone who doesn't suffer from it for life.

But let me say this. There is one thing which could have made a huge difference to the state my head is in now. Having someone earlier in my life who I could trust to turn to. Who wouldn't have judged me. Who wouldn't have said I'd grow out of it. Who wouldn't have seen me as odd. Who wouldn't have told me to pull myself out of it. Who would have been able to handle the information, and who would have tried to understand.

If you know someone with mental health issues, just try to understand, please.


* I used to suffer from horrific vivid nightmares every night, and regular waking visions, where I would be awake but see a nightmare such as holding the dead body of someone I love.

Review: Colman's Season and Shake

Reviews probably aren't going to be common round here, but sometimes they are just necessary!

Tonight was one of those nights. We've had to resort to ready meals so often lately, we've had enough. We'd picked up eggs to make a spanish omelette tonight, but come dinner time I was too exhusted to make it. Upon suggesting the chip shop, I discovered my husband was in a lot of pain, and I didn't want him to have to go out, and I wasn't well enough to get dressed.

So, I looked in our cupboards. The other week, I picked up a Colman's Season and Shake, sausage and herb flavour, and it seemed managable. Better for us and tastier than a ready meal, didn't need to leave the house, didn't need huge amounts of prep and sitting over the stove, and very few dishes... Err, yes please!

I just sliced an onion and a pepper (both of which could be done in advance on a "better day", or by someone else, and frozen); sliced some spuds and some brocolli (Mr doesn't like mushrooms!) and threw in the sausages. Let it cook, and done! I don't love it, but Mr likes it a lot, so we will be visiting this range again. It feels like I've cooked us a decent meal, but so very managably, and that's super important. Next time I might sub the onions for leeks, and the brocolli for cauliflower. But really, you can just make it up with what you've got!

Yay for easy meals :) Do you have meals which you can knock up quickly on the bad-but-not-dead days?

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.

Good News

At last! Apologies for the delay in the post, it has been a very busy week, and I simply have not had a clear enough head to think.

I had my tribunal a week ago. It went well! It was moved to earlier in the day, as there was a cancellation. A surprisingly welcome relief, as my anxiety was horrific. It was long, and my husband really suffered being upright. But I got awarded Lower Rate Care on personal grounds, as I need attention throughout the day (for example, I won't go to bed unless I am encouraged for several hours). It is a huge relief! Until summer 2014 as well, yay :)

Just got to wait for my ESA result now...

I find after meetings like this you start to remember everything you should have said. Like, why have I been ill for 12 years? I made up answers at the time, but it's because I keep contracting things that make me relapse. Stupid brainfog! Hopefully everything will work out ok though.

Taking some time out to really chill for the next couple of weeks. Much needed! That might mean less posts as I chill, or more as I find time to write the posts I've wanted to for months...

• My personal story with ME.
• Our story of benefit battles.
• The effect vaccinations have had on my life.
• How I learnt to drive.
• Sex as a disabled couple.
• Making the decision to start a family.
• The balance of pacing v enjoying life.
• Continue the My Experience series.
• How every medical professional wishes to confirm the diagnosis I have.
• The jealousy of those around you when you are too ill to work.

I am also hopeful to do a post for ME awareness week, but in case I'm not well enough, please look at this series my friend is doing, it's not too much to read which can be good!

Anyway, it's 5 years today since my husband asked me to be his girlfriend, so I will leave things on the happy note they started :)

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?

ME Took Him Away.

I needed Mr last night, desperately. I needed him physically, emotionally, spiritually. But his consequences from the day were so severe that he couldn't move, he couldn't speak, he couldn't think. It was almost like just his shell was left, though I knew inside he was screaming to get out.

Loneliness.

People don't have a clue...

About how ill the benefits system can make you. How it can destroy what little life you have left.

They don't have a clue about how Atos treat you, or how you have to fight just to have them believe you're ill.

They don't understand how ill you are, and how impossible the forms are. They don't have a clue what a medical is like, or how soul destroying it all is.

They don't understand that we don't choose to be ill, and that if we can't convince Atos how ill we are we will be left penniless.

They're healthy, they don't understand.

Occupational Therapist.

Back in September 2010, Mr had lost his ESA claim and had been put on JSA. His health was deteriorating on it, and he started using a walking stick which we got from my late Grandad.

We started trying to find a way to get him one on the NHS, and were referred to the ME specialist.

We saw the ME specialist January 2011, and after being told there was nothing they could do for him, he was signed off to a local physiotherapist, supposedly to have a look at his needs at home.

Eventually an appointment came through, but we had to go in to see her (late last year I think?) because she couldn't do home visits.

By this point, Mr's first walking stick had broken, and he was (and is still) using a hiking-walking stick of his parent's.

The physio was useless, told him that passive exercise and massage are useless (but we know that when you can't move independently it's really very good to keep moving) and said she couldn't help. But referred us to have an OT come visit us.

She came this afternoon.

Another person who couldn't understand that the specialist wouldn't see us. Couldn't help us. Another person who claimed knowledge in ME, but couldn't understand why Mr has a weak neck, or why he has pain everywhere. Another person who doesn't understand that you just have to muddle through and push through how rubbish you feel just to live. Another person who went on about pacing, and didn't understand how we could know about it if we'd never been on a course… I wanted to walk out in tears.

Heck, she was even trying to convince Mr to spend all his time sat in a dining chair because it would be easier to get in and out of, completely missing the point that he can't sit in chairs like that :|

The medical profession are generally "nice" to us. But they'e useless. And they have all formed such opinions of what ME is, and how to manage it, with no thought as to the people who actually have to live with it day in, day out.

We are getting a shower board to try. And she's supposed to be referring him to someone else to get a walking stick. But she couldn't help us with getting handles to hold on to in the bath. And she couldn't help get him supports for his body when sitting. And honestly? She didn't get ME.



In other news, I've had my ESA form for 6 days of my 4 week time limit, and I haven't even started it. I've had a virus since the day it arrived, and only today have I been able to move my eyes without pain :(

DLA Tribunal (Take 1)

Well... Today was odd.

The taxi turned up and we made it to the court on time. We sat on the floor outside the room until someone got us chairs.

The tribunal clerk came out, and since I was trembling and had already been crying my husband did the talking. Apparently he can't talk on my behalf without being made an appealant. Now you tell us.

About 5-10 minutes later we're called in. The panel (judge, dr and care awareness person) introduce themselves.

"We've read over your claim and we've come to a decision."

Wait. What? They haven't even asked us anything yet... Are they awarding me DLA?

"We are going to ask your GP for your last 13 months medical records..."

OK, now? Or what?

"And someone is going to come to your house and give you a medical."

Ah, right, so what should have happened originally. (They didn't look impressed I'd been sent to tribunal without a medical!)

"It should all happen pretty promptly, then we'll see you back here."

Heh. So I've got to go thru a medical and all this over again. Joy.

/leave.

The good things are that we can now make Mr my appealant. It's not a straight out no. The medical might count for my ESA claim too?

The bad things of course, are that I've got to have a medical and potentially go through the tribunal still, and all that stress. Sorta hoping it'll be reconsidered without me having to go, but we'll have to see.

Oh, and there's nothing overly good in my GP records, so that's a bit worrying. But nothing I can do about that now.

Mr was amazing and spoke well and looked after me <3

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...

I read a lot of blogs.

That might even be an understatement... And within those many, many blogs, are a good amount of Christian relationship blogs. Man, that sounds tedious. But I've got into them because of the people writing them, and the honesty with which they write.

Lots of these blogs hit notes with me, whether it's the balance of housework within a marriage, or being stuck in an "inbetween" (inbetween studying and working, renting and buying, being a couple and being parents etc). I so often go to start writing a comment, but in the midst of the comment I end up saying, "it's different for us though, we've both got chronic illnesses, so we have to work it this way, and it's like this because of it...", and so on and so forth... And then I hold down Cmd+A, and press delete. Because noone who reads that will understand. And I don't have the energy to explain.

You might be stuck in an inbetween, but at least you can actively do stuff! We're stuck in an inbetween where just making a meal is enough to confine us to bed spasming in pain. You might argue over who has to do the housework, we have to call our parents (who are pensioners!) in to do the most basic of chores because we just can't. We have to rescue the other person as their legs give way, literally pick them up off the floor and laugh through it all because it's the 5th time it's happened since we woke up a few hours ago.

Our life is unimaginable to you. But don't block it out of your head, because ME can strike anyone at anytime.



Just over 2 weeks to my DLA tribunal. Applied for taxi fares, here's hoping they'll pay...

12 Years.

Tomorrow, I turn 22.

The last time I was well for my Birthday, I was turning 10.

This year, on top of the ME, the back pain and the thrush, I also have a cold.


Of course it saddens me some what, but I know it will be an amazing day with my husband and family <3


In other updates... Got homeopathy again this week, to try and sort out dosage confusions. Mr has ADHD clinic too. Next week I've got dentist, then week after that my DLA tribunal. My anxiety is remaining surprisingly low. Had the drs this week, and have a potential gyne referral for the thrush, and I am now on dihydrocodeine along with Mr.

It helps with my brain fog (well, the heavy weight of fog, frustration and anger in my forehead) as well as dealing with my sensitivities and pain, so it's quite good :)

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.