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.

 

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.

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!]

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!

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.