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.

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.

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...

Phonecalls.

We weren't well enough to do any more DLA prep today. Mr did several phonecalls on my behalf though - the joy of being unable to use a phone!

He spoke to the tribunals court and they're giving us advance payment to have taxis, which is wonderful. (Altho' scary, as taxis freak me out. At least Mr will be with me!)

He spoke to DLA because we noticed some of the pages of my original form are missing in the photocopy they spent me, and we're concerned they're missing in the tribunal's copy too. They said it could take 3-4 weeks to sort, so we're just going to have to take a complete copy with us!

He also spoke to DLA to check we'd got the correct appeal papers. I'm not convinced they understood, but it appears we do.

He then had to phone ESA because they had the wrong phone number for me... Now they're going to call back at some point to give the spiel about the changeover, which is scary. Mr mentioned to the person he spoke to something about how ill the process was already making me and how much worse it would get, and it sounded like the person took personal offence, but hey.

I'm not coping too well. Severe headpain, hate this ME and need to get out of this horrific benefits system. I can't cope.

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.

My Experience: Homeopathy

I'm hoping to slowly establish a series on here of personal stories of treatment experiences... Some may be positive, negative, or just neutral. If you'd like to share your story on a treatment for ME/CFS (or any of the other illness mentioned in this blog), leave me a comment or get in touch :)

Many people have issues with the concept of homeopathy - mainly because of a lack of science behind it. However, you could say the same about ME! Many state that the positive effects of homeopathy are merely a placebo effect... I beg to differ.

I started on homeopathy when I turned 17. I had been struggling with severe depression (as a result of ME) for about 2 months, with milder depression previously. My GP offered me a referral to Child and Family (which didn't come through until 6 months later - if that's the treatment for severe depression I feel sorry for anyone else), but I requested seeing a homeopath.

We're lucky where we live, as the NHS has a homeopathy service. They are all trained doctors who can pick up on anything important, whilst also listening to everything about you, and treating you with homeopathy. They are some of the most patient, understanding doctors I have ever met, leading a very chilled practise. Today my new homeopath spent 45 minutes just getting to know me and learning about me.

Saying that, we nearly lost the practise this year, and I have fought hard to keep them. There are now less staff (my main homeopath has gone), but I am relieved that I am still receiving treatment.

I lose track of the remedies I have been on, but over the years I have been on varying strengths of calc carb and sepia for depression. Today I have just been changed over to silica - very scary to change when I've been "ok" for so long, but if it will help maintain my head further than worth a shot.

Initially, back in 2007, my first remedy transformed me. It built this wall up in my head between me and the depression. It was quite a high wall, and the depression couldn't reach me over it. It transformed my life.

When I get tired, or things get too much, the wall often doesn't feel high enough to keep the depression out. It's been more obvious lately with my relapse, which is one of the reasons we're trying something new.

The other remedies I'm currently on are sarcolactic acid (which helps ease the extent of my aches and stiffness), and pulsatilla (which I take mid cycle to ease my PMT, which can be very bad!)

Most of the remedies I've been on have made really positive differences to my symptoms. However, I feel that the remedies that haven't made a positive difference are the proof needed that homeopathy works.

A lesser example are the remedies that simply do nothing - for example I tried one or two remedies to help my nightmares a couple of years ago - they did naff all.

The main example would be early 2008. My normal homeopath was off ill, and one of her colleagues prescribed me something without taking my personality into account. (And now you're thinking what the heck does personality have to do with medicine. Different personality traits reflect different elements within ourselves, and we all react differently to different things.) I don't want to say what I was prescribed, because it might be the perfect remedy for someone else. But for me, I was in bed within a matter of days, and it took me months to recover. If it was a placebo, that would not have happened - my attitude towards it was no different from any other remedies I take. If anything, I've been more fearful towards new remedies since then. But it can't let you be put off homeopathy, as what's the difference between that and side effects of conventional medicine?

Yes, homeopathy can make you feel worse initially, but so do many conventional medicines. It's just a different route to try.

Of course for some people homeopathy simply won't help them. And there's certain illnesses where conventional medicine must come first. But most of the people I've spoken to who didn't find homeopathy helpful, tried one or two remedies and gave up. Homeopathy is about trying different remedies, to find the right one that reflects your symptoms and your personality.

It has transformed my life, and if it's available on the NHS near you, I really recommend just giving it a try.

Sat in the Corner

When you're out socialising, do you see someone sat on a chair at the side, looking awkward, and not participating?

They may well be rude and unsociable. They may simply not want to be around people.

But they may also just be desperate to socialise but completely unable to come to you.

Next time you're in a social gathering, look around you. Is everyone stood up, talking to each other?

Well, some of us can't stand. Some of us are forced to sit. And really, we should be lying down.

We may even need a wall behind us to hold our head up, as our neck isn't strong enough by itself.

We may be so shattered from just being out the house that simply thinking is too much.

Our anxiety may be crippling us to the point that just making eye contact scares us.

We may have spent so much time confined to our house for the last decade that we honestly don't know how to hold a conversation with someone, or have any knowledge of the world.

But you may be the first person (other than our carers and our GP) to speak to us in the last month. And we would love for you to come over. And we will try our hardest to communicate with you. We're sorry if it's not your normal standard of conversation, but it will mean the world to us.

Some rambles.

Wow, I have 2 whole followers... Thanks! Sorry I haven't written in a while. It's been in my thoughts a lot, but my thoughts have been so numerous and disorganised that writing them down has felt impossible.

I did too much at the beginning of November, resulting in the last 4-6 weeks being spent resting more than normal. One of the big things to have hit us as a couple has been that I've been too ill to cook for us. Thankfully this tied in with Mr being awarded DLA, and so takeaways have been an affordable option on such days. Without that, I honestly don't know what we'd have done.

There's been a lot about ME in the media lately (from news articles about how many school children could have ME, to The Food Hospital on Channel 4 saying they're just tired people who need to eat right). To be honest, I have generally ignored it. That might sound odd, but I haven't been able to handle it emotionally lately. Just coping with keeping me and my husband going has been more than enough. From what I've heard, ME has continued to be portrayed inaccurately, and since that only fuels my anger it's best for me to keep away. On top of that, the benefits cheats being publicised so widely and the hate campaigns against disabled people have left me scared just to leave the house.

Me and Mr have been constantly told (by people like the local physio who was nice but useless, to a back masseuse who hammered me until I cried) that we should exercise. Noone who has ever experienced moderate (or worse!) ME would say that. When you have to think twice about how you are going to eat tonight, or if you can reach to have a drink, exercising is just a joke. One person even told us it wouldn't make us worse! Maybe not for a healthy person, but a body suffering from ME doesn't work like a healthy persons, and the slightest bit too much can cause huge setbacks, as shown by my recent crash.

The long term tablets Mr was put on for his ADD (methylphenidate hydrochloride) appear to generally be making his thinking clearer, and easing some of his brain fog. The short term tablets (Strattera) are knocking his ME, even on the lowest dose, so are being used with caution. His dihydrocodeine is still helping his pain, but with starting to sit up again his back pain is showing up more.

I get to see an NHS homeopath again next week, which will hopefully help me get back on track. Spent the last year fighting funding issues.

We both saw a back masseuse this week. She really helped Mr, and is gradually bringing his back to a healthier state. I struggle with the slightest touch on my back, and so the work she was doing to me has made me quite ill overall. I knew it was too much but she didn't listen to me when I asked her to stop, and I wasn't strong enough to stand up for myself. As bad as my back and neck problems are, I won't be trying that again til my ME is much better.

I've also had thrush for the last 5 and a half months. With having ME, I don't think my immune system is strong enough to fight it. Today I was informed my dr will no longer prescribe me the one cream which has been easing symptoms... But she will prescribe me tablets I can't even swallow... She is convinced they will work, even though the other 7 prescriptions I've had haven't! So we went out and bought the cream (there's a reason we have free prescriptions though!) and will have to go in and fight for it on Friday. I think Mr will be doing most of the talking like he did today. I get too angry and upset. My anxiety is rough.

Sorry if this is bitty and doesn't read well. I set up this blog to document how difficult this life is, and have since discovered that it's almost as difficult to truly write about and do justice to.

Please excuse the brief post.

I've had a crazy busy day and am insanely tired!

Mr had his DLA medical today. It went so much better than his ESA one! For starters, it was at home, so no dealing with taxis and waiting around.

The Dr turned up an hour early - I expected him to, so as to catch us unawares. Of course, catching people out only works when there is something to be caught out, and we have nothing to hide. We were resting in bed when he arrived, and my mother in law was doing housework downstairs - pretty typical day!

He was a nice man. You never know how much they take in, and afterwards you remember how much you didn't say, but at least we weren't treated nastily, and Mr was able to stop the physical examination when it got too much. (With his ESA medical he was told if he didn't do everything he would be called back again and again until he did.)



I feel angry and hurt by the Government and the media atm. They are discriminating against disabled people. People need to realise that one day they may become permanently disabled and dependent on benefits.

"Something for something" & DLA contd

You may have heard the Government's latest mantra mentioned on both BBC and Guardian, "something for something".

It works around the concept that to receive benefits you must give something. Even when disabled. Whether this "something" consists of volunteering or working remains to be seen.

And, if like me and Mr you are simply too ill to work? Well. We obviously have no value in society. If we can prove our invisible disabilities are real and serious, and that we're not just "workshy", we might get basic support. But we know what it's like to prove to the benefits system that you're ill when you don't fit into tick boxes.

I have never hated this country more than since it became a ConDemned nation. Being disabled is one of the most difficult trials, more than a healthy person could understand. Add in the concept of being scum and a drain on society; add in benefit forms, medicals, appeals and tribunals; add in Atos and this horrific Government... And you're just left wondering what the point is.


Yesterdays post consisted of 2 more DLA letters. One for me - looks like they don't believe I'm as ill as I am, since they're sending me straight to tribunal without a medical. And I don't even have an ME specialist letter to help my case, since they want me to have group therapy rather than see a specialist. Its only been 11 years, I think I know how to manage my condition thank you very much. I just need some medical support behind me. Especially when my dr denied my need for care when they wrote to her. Anyone wish to scream with me?

And the second letter? Mr has a home medical next week. That crushing weight became heavier. I am living proof that the benefits system makes your health worse. When we don't have a battle on I can keep my stress and anxiety under control. Benefits battles make those symptoms flare up for weeks/months at a time, which in turn makes my health worse and takes me further away from recovery.

As does every new mantra against disabled people, every scheme against us, and every comment that belittles the horrificness of this process.