Update: Drs Appointment

OK, so I mentioned I had a Drs appointment yesterday.

I'd actually been needing to go since November/December, but... I can't make appts because I can't use the phone, so Mr has to. Mr forgets to do things and has to be motivated constantly. Because I didn't want to go to the Drs, I haven't been reminding or motivating him. Yeh, vicious cycle. Anyway, on Thursday, when I was barely recovering from the work-focused interview, Mr informed me he was phoning the Drs on Friday. I hoped, for a future appt. He said no, for an appt on Friday. I had a wee breakdown... I agreed tho, just to get it over and done with.

It actually went well, we have a good Dr to talk with.


I've still got The Itch. Did I mention it got rediagnosed as Chronic Vulvitus? Or something like that. I was on a very potent steroid cream for 6 weeks; then a potent steroid cream for 6 weeks; and then it felt a bit better for a short while. Then I tried the hydrocortisone cream, and it made it itchier. Then I got confused. I was getting progressively more itchy, so had 2 weeks back on the potent steroid cream. My Dr has now prescribed me a moderate strength steroid cream, which I will use for 2 weeks before trying... errr... a nappy rash cream. Fun, hey?! I have shown improvements on the steroids. I mean, the very potent one made the skin very fragile and sore, on my thighs as well as my vulva. That improved on the potent one, and I've started to produce natural lubricant again. I think we're making progress, it's just working out how best to manage it now.


And... I am now on an antidepressant. Citalopram, to be precise. I've considered them for years. But I was too young, and homeopathy helped, and I simply didn't want to. I've been scared of losing my emotions, losing my libido, and a million other things. When they were given to me, I felt the weight of the stigma attached to them land on my shoulders. But I feel proud that I'm taking them. It feels like the most grown up decision I've ever made, because I'm actually trying to take control of my life. I feel positive about it.

The most difficult thing about it is that it sorta means delaying starting a family. That is really, really hard to deal with. Especially as we haven't used contraception/been careful since late 2011, and now we have to be somewhat careful again... I don't want to be on this long term, I'm hoping within a year I will be strong enough to manage without it, and then we can start TTC properly. But noone but our Dr and my homeopath knew we wanted to start a family, so noone knows how hard this is...

It's also not advised to take Ibuprofen with it, so I'm going to have to be super strict with that - I can't imagine getting through the first few hours of period pain without it, so we'll see how it goes. The Dr didn't mention my Dihydrocodeine though, so I assume that's ok!

As for the reason we've eventually taken this plunge with an antidepressant? Well... I am sick of feeling so overwhelmed, suicidal, unable to cope. Mr is struggling to deal with my hours of screaming/crying/shut down every day, and he needs something to stabilise my emotions. The reason my mental health has got so severe? ESA. Work focused interviews. Medicals. Appeals. Tribunals. Brown envelopes. Just hearing the letterbox go gives me a mini panic attack now.

I pray these tablets are worth delaying our family for. I pray they help me. I pray I can take control of myself again. And I pray that an improvement in my mental health won't mean they class me fit for work, because my physical health is still more severe when people realise.

 

Update!

So, I've been feeling too overwhelmed to post here lately, sadly. My brain fog had been bad, I've lost my ability to speek more often and for longer than I care to mention, and with it has gone my ability to type much. Foggy, painful fingers.

There's been a lot going on, here's a list of updates due:

- Drs appt yesterday
- work-focused interviews
- ESA appeal
- ESA review + the non-medical

Instead of overwhelming myself and trying to do them all here and now, I will do a few brief posts over the next few days to sum it all up...

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.

Homeopathic Aggravation

Last year I had to battle to keep my NHS homeopathy, due to large funding cuts. I won, but I now see a different Dr. Initially, this scared me, but it has actually been brilliant. My former homeopath had pretty much given up trying to improve my health, and was starting to try and encourage me to do GET etc - not good. My new homeopath is wonderful, and is pushing to try and find a remedy which fits me perfectly. So, last weekend I moved from Pulsatilla LM6, to Gelsemium LM2. And I have gone down hill ever since... It started with a mild headache and nausea. Over the last week the headache has got worse. I have developed more jaw ache. Painful glands under my jaw. Earache. Sore throat. Sore neck and shoulders. All primarily on my left hand side... Last night I felt very ill. I didn't take the remedy, I was too scared. I didn't know if it was coincidence and I had a virus; if the homeopathy was making me worse before making me better; or just making me worse...! My homeopath is only in office on Mondays, but I was able to get hold of his GP surgery and contact him. He phoned me back and offered a plan of action. Stop the Gelsemium for a week, as it has obviously aggravated me. Then start it again, but dilute it in water so it is not as strong, and see how it goes.

From my limited knowledge, the aggravation means that this remedy could work very well for me. But obviously reacting this strongly is not good. Let's see how it goes from here...


Oh, and talking about medication. The gynea has moved me from clotrimazole (as she believes there is no thrush, only chronic vulva irritation) to 12 weeks of very strong steroid creams. So far, so good... I am also now washing with aqueous cream, which I think is helped moisturise down there :)

Anyway, here's hoping I feel better pretty damn soon...!

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?

How to Offend Disabled People.

Sadly, I cannot find the offending leaflet online. However, when me and Mr walked into the Job Centre the other day for a complusory work-focused interview (nevermind I couldn't sit up long enough for the interview) I was met with a barrage of leaflets asking if I would be better off in work.

Of course I'd be better off in work! We could afford everything we want, and live somewhere nice, and have a mortgage and settle down, afford holidays and all our car expenses. Life would be amazing if we were healthy and could earn our own money, it's all we want!

But some of us do not have a choice, and to be treated as if this is my choice?

So. F***ing. Angry.

How to Waste Tax Payers Money.

It's pretty simple really, you just send someone who is obviously not well enough to work to attend work-focused interviews. A waste of people's time, people's money, and only causing me and Mr to stay ill for longer.

Well done, government.

Most of it was spent with the interviewer complaining about the lack of air conditioning in the building, as she knew it was pointless, too.

Just think, stop my interviews, and you could give the staff decent working conditions...

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.

Empathy

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!]

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.

Too ill.

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

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.

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?

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!

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 :)

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.

ESA

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...

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.