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.

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?

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?

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

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...

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.

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.

Brown Envelopes

If you've spent any time in the benefits system, you'll know about, and probably fear, the brown envelopes. Letters from the DWP, more often than not carrying bad news. Atos however, use white envelopes, relieving the initial fear of post landing on your doorstep. Well, until you see who it's from, when the fear quadruples.

Mr received an Atos letter today, informing him he will have a medical as part of his DLA claim. He's already had a medical this year, for his ESA claim. We fought for months to get it at home, and eventually he had to go to their centre for it. He fell head first out the taxi when he got there, and we were both treated horifically by the "nurse". She practically shouted at me when I stood up for him,  she threatened him when he was too ill to move, and he was told to pull himself together when his leg spasmed.

This medical looks like it will be at our house, which is a huge improvement. It is still terrifying though. I suffer from awful stress, and it makes my ME so much worse. The moment we got that letter a huge weight dropped into me again, and I don't know how to shift it. It's just stuck there, sucking everything from me. My anxiety is high and I've been shaking for hours now.

Will I be getting a similar letter through the post this week? I'm applying for DLA too, and unlike Mr I haven't had a medical since 2008.

I'm terrifed. It's not "just a form", it's not "just a medical". It's a stressful, life destroying, humiliating experience, where you have to try and prove the truth - you have a fluctuating invisible disability, that you desperately need help with, but which doesn't fit into any of their tick boxes.

We're entitled to this help, and I hate the world making us feel like "benefit scrounging scum". We're disabled, not lazy. And being disabled doesn't make us a lower class. You might be this ill one day.

 

"Just" a Form.

This article was published recently, and it made such a refreshing read. It relieves a sense of loneliness when you read that you're not the only people being thoroughly demoralised and beaten about by the benefits system. I mean, you know you aren't, but to hear someone else writing a piece that could be about you, is a welcome relief from the torrent of "benefit scrounging scum".

However, then I read a comment, which to some extent implied that it was "just a form". Let me quote it for you.

The second point is that the application (and justification) regime for benefits is too ‘tough.’  Again, money is not free, governments must rely upon tax receipts.  And it is right and proper that those tax payers see justification for where their money is spent.  It should be rigorous, it should be testing.  Money is supplied from a country that does not have any and from tax payers that also must budget and struggle to make ends meet.

This is not a radical concept.  As a civil servant, most of my day is spent justifying and reconciling where my work and money is spent.  I must write a report for every penny I spend, justifying how it is used in the pursuit of the aims of my job.  At the end of my 60 hour week, I too am left tired, exhausted, and questioning my career choices. 

Government money is not free, it is built on a currently unstable tax base.  Do not forget where it comes from.  If filling in a form is at the core of your complaint, I can recommend an investigation into the US welfare system, or indeed Afghanistan’s.

The scary thing is, I know this person. And hearing this from him made me realise just how oblivious he is to the truth we write about in this blog. Now, I know I haven't really gone into our battles with benefits, but the only reason is because it is so complex I struggle to know where to start!

The thing is, to a healthy person, a benefits form, be it IB, ESA, or DLA, is just that, a form. But to a healthy person, brushing your teeth is just brushing your teeth. A healthy person can just have a shower, or even just do a supermarket shop. When you're disabled, nothing is "just" something, and merely living becomes a job much harder than 60 hours a week. It's a 24/7 job to keep your self alive and functioning to some degree. It's attempting to barely exist - your hopes in actually living life are gone.

In the past 12 months, I have had to fill in an ESA form for my husband; an IB form for myself; and a DLA form for each of us. On top of this, we've had to fill in paperwork for 3 tribunals, plus an appeal for IS. Oh, so that's just a bit of paperwork? Maybe, if you're healthy.

Let me recall the latest, the DLA form. It's bringing tears to my eyes just thinking about it. We, a disabled couple, had 6 weeks to fill in the form. The DWP, a healthy organisation, had 8 weeks to process it (and they ignored half the information we gave, meaning we need to resend it). There are about 60 questions in the form, over half of which require essays for answers. It took the 2 of us about an hour to do a rough draft of each question. Again, that might not seem much to a healthy person. But that's 30 hours. Plus the other questions. And making it legible. And photocopying it all. Let me break it down.

My husband's brain fog and ADD means he has very poor concentration, often forgets words and cannot form sentences. His fatigue means he cannot focus on something without becoming so tired he needs to sleep. He cannot sit up for more than a few minutes. He cannot write or type for more than a small amount because of pain.

My anxiety means that each bit of the form haunts me constantly. If I know I have a benefit renewal coming up, or if I'm in an appeal (which can last for over a year) - just it's presence in my life stresses me so powerfully that my head crumbles. My brain fog means sentences are difficult to form coherently. My pain levels make writing and typing difficult, and I too cannot sit up.

We are both trying to recover from this horrible, horrible illness that is ME. And spending an hour each and every day trying to fill in a form to prove this made us too ill to cook, to wash ourselves... Anything. We had to have family round two or three times as much as normal because we couldn't cope, and afterwards we didn't leave the house for weeks as we had to recover. Mental energy effects our physical energy.

Can you begin to grasp the impact "just a form" had on our lives? What I haven't mentioned, is that we ended up doing both our forms in the same 6 weeks. We nearly didn't make it in time - then we would have been penalised. We had to give it to family to write up coherently. They also had to make copies of everything, "just in case".

We had to throw all our dignity out the window to complete that form, and realising just how ill we actually are, and how much care we need fought against all the positivity we try to keep in our lives. The depth of detail one has to give, and the things you have to say to cover yourselves is agonising - I honestly don't think you can begin to understand it unless you live it, day in, day out. I had to draw up memories of my most horrific nightmares to give them "examples" of times I've needed night time care - something I require every night. My husband had to recall examples of when an elderly lady offered him help because he had collapsed. You wouldn't mind giving this information if it was at least read, and then responded to with the realisation you are ill. Instead you receive refusal and have to head to tribunal.

We are fully aware that information has to be given to recieve benefits. But this process is soul destroying. And this is without even talking about the medicals. I'm not strong enough to right now.

And seriously? Don't even get me started on this person's understanding of "tired" and "exhausted". I'm sure he is still able to get himself out of bed after a 60 hour week - something we were unable to do after an hour filling in one question on that form.

Extra Demands

I released this week, that we live a very fine balance in life. We each know how much we can do, and how much the other can do, and we pick up the pieces in quite a smooth way as we go along. Neither of us likes pushing the other too far, but I think we learn to accept that sometimes we're just not capable of something.

Mr had to go to the drs on Monday morning. He needs more Ritalin to help his ADD, and we're trying to get a home physio. Neither are yet realised, but we have to keep fighting. I was supposed to go in case his brain fog kicked in, but with my increased pain levels and anxiety around drs he let me stay home.

I first knew he was home when I got a phone call from him - he sounded very rough and was sat, or should I say, stuck, in our car. He'd just been sat there on his phone, and he felt a stab in his back, and now he couldn't move.

We managed to get him into the house and up to bed - he couldn't even straighten his legs. My mind went a bit overactive, but at the same time I pulled on God's strength. We phoned his Mum, querying whether I should drive him to A&E or not. It was decided we contact the very dr he'd just left, and wait for a chiro appointment. When the dr eventually called back, she told him to double his already strong painkillers. He was able to straighten his legs by bedtime.

I felt very lonely with him stuck in bed. Everything was left to me, which is where the realisation of how balanced our relationship is hit me. We'd previously decided to do our own dinners that night, and there I was cooking separately for both of us!!

Tuesday he made it downstairs, and he even helped cooked dinner - a blessing since I was too exhausted. His Mum provided it for us though - another blessing!

Today… He managed to drive to the chip shop - neither of us were well enough to cook. He really can't sit up for more than a few minutes, although his back is comfier when lying.

I suppose it's just a bit lonely. And it's silly, cos he has to spend a lot of time in bed, but normally I know he can make it downstairs, he can sit and play a game, he can bend to pick up a bunny… But right now he really can't, and that's a new balance to find until he's better.


His emotional strength never waivers though.

I am supposed to be being referred to our local ME specialist, who saw Mr earlier this year. I haven't given the family histories, and our personal ME stories yet - I really must… But let's just say I've been ill for 11 years; have 2 siblings, a sister-in-law and a husband with ME - I know how it works and how to manage it. I got my diagnosis 7 years ago.

The letter that I received through the post today kindly confirmed that diagnosis (big surprise), although called if "Chronic Fatigue Syndrome". That doesn't make me feel at all positive towards them, but it's not the worst bit.

It went on to say that because of this I have been, and I quote, "fast-tracked" to "group therapy".

Now, I know I have anxiety issues. And I'm on treatment for depression. And I can become very stressed. But seriously?! I have been living with this illness 24/7 for 11 years of my life. I know how to manage it. I might not have made miraculous improvements, but I have had a very enjoyable life (I'll have to post my pacing v. enjoyment discussion at some point too…!)

And you know what? Instead of going along to a meeting which would 1) make me very angry, 2) be utterly pointless and 3) make both me and my husband very ill; I am going to "manage my ME", and not put me and my husband through sitting up for TWO WHOLE HOURS before midday.

Thankfully I've pretty much gone from anger at the letter to laughing at it, but still… I was hoping for this specialist to support my benefit claims!!

P.S. I include a logo of our name at the end so you know which of us is writing. I don't know if Mr ever will, but the option is there :)

It's the little things.

I think every young marriage, or couple who have moved in together, have certain balances to find. Specifically right now, I'm thinking of housework, and all that it entails - cooking, dishes, laundry, ironing, general cleaning; even locking up the house at night, or sorting out your bunnies.

I doubt it's ever easy to find this balance, but when you're both ill, it becomes much harder. We are lucky, we have parents who come over every week to help keep on top of the dishes, the ironing, the hoovering... You name it, really.

I often think, that for a healthy couple, it must be more a case of "who has the time?", and "who can be bothered?" However, we have an added third element of "who's well enough?" With the phrase "well enough" being very open to interpretation.

Whether it's because I'm the healthier one, or because I'm female, or because I like things clean and tidy... I end up doing a lot of the household stuff. And I mind for one simple reason - doing something as small as soaking a muddy pair of jeans to be washed can cripple my arms and hands to the point I can barely use them for the rest of the day. It's not just a sacrifice of time, it's a sacrifice of a lot of energy and pain reserves to just keep our house ticking over.

I can't begin to imagine how much art I could do without housework...

Which is why, if my husband is well enough to lock the front door one night, or empty the dishwasher one morning, it's almost as precious as being given flowers. It's him thinking of doing something, and sacrificing a bit of his health to keep us going. And I know how much that costs.

Disclaimer: my husband is more helpful than this makes him sound ;)

Fed up, Frustrated and Furious.

I think these are feelings that everyone will relate to at some point in their lives, to some extent. Whether it's because you're stuck in a job you don't like, you've been ill for a week or ill for 10 years - when you feel trapped in some way, these feelings occur.

They're not a symptom of chronic illness/disability, but if you are chronically ill (by which I mean, have a long term illness) I can't imagine not feeling it at some point.

ME traps you inside your own body. No, worse than that, it traps you in bed, on a sofa, in a wheelchair or in your house. It puts huge constraints on your life. It makes just climbing the stairs feel like Mount Everest, and cooking dinner like running a marathon.

It takes your dreams and aspirations, and tips them on their head. You long to fulfil your dreams - to create, paint, write, work… But you're stuck inside this body that physically cannot  do it. And yet you look well.

And I think that when you're being stopped from fulfilling everything you wish to, an anger develops inside you. But you can't go for a run - often times you don't even have the energy to punch a pillow - and so it just sorta bubbles within you, and erupts when the fatigue overwhelms you. For me it erupts in shouting and tears - often when I'm attempting to cook dinner. For my husband it erupts when he's playing games - the frustration just surfaces.

And this is where, as a couple, you have to not take it personally. My anger is in no way an attack at him, like his anger is in no way an attack at me. It's just feelings that have to be let out. And they have to be talked about. If you know where the explosion is coming from, why it is erupting when it is, and the story behind it, you can accept it and see past it. You don't take it personally, but you give them a hug, and you help each other through it. Not being afraid to admit how much you dislike the other's anger, but understanding it nonetheless.

Hello :)

I never know how to start blogs like this, or how to begin an introduction. I'm not even sure what I want to say.

I've been part of a disabled couple for 4 and a half years now. I, Mrs, suffer from ME/CFS, and have done for 11 years. My husband, Mr, has suffered from ME/CFS for about 6/7 years, and was diagnosed with dyslexia and ADD at a young age.

I've never really known a relationship where one or both parties are healthy, but nonetheless, being part of a disabled couple requires adaptations. It requires patience and understanding, vast amounts of love, and strength to fight for understanding, and support to live. One thing I have noticed, is how rare disabled couples seem to be, and how little support is out there for them. I just hope that over time, this becomes somewhere where we can share the highs and lows, but also where you can come to find support and encouragement.

I would really love to hear from people in a similar situation, so please do leave a comment below. Also, if certain adaptations (colour, font, spacing etc) would make the blog easier for you to read, please do let me know!