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.

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

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...

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.

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.

The reality of Welfare Rights funding cuts...

... and why we won't return to the CAB.

Mr phoned Welfare Rights this morning. They've been with us since June, when we stumbled across them whilst looking for support for Mr's ESA claim. They invited us in and talked through our finances and benefits claims; and since then have phoned us occasionally to see how things are going for us. Despite being a government organisation, they have felt the most concerned for our welfare.

Over the phone, they were able to give Mr advice on his medical this week, just grounding him in how to approach it, really.

Mr asked about a representative for my DLA tribunal... We can go in nearer the time and have some help preparing, but there is no longer funding to provide a representative to tribunals. And this is where the funding cuts hit the poor and disabled first.


The only suggestion given was to go to the Citizen's Advice Bureau. Sadly, this just isn't an option for us. Aside from the fact that appointments at our local CAB are gold dust (the only time we went, we booked an appointment, but only got in the door because someone had forgotten to lock it, and were then forced to sit there for 3 hours), the quality of the service is... dare I say it... unacceptable? Please don't shout at me, I am fully aware it's volunteer based, and I am sure there are many caring, knowledgable and supportive volunteers... I just haven't met one yet.

We first used a CAB for Mr's ESA tribunal (for his first claim - he's claimed twice now), and the lady we had there barely believed he was ill, and instead of basing the tribunal argument on his serious health conditions, she was encouraging him to lie about being suicidal or having uncontrollable anger. We were not prepared to lie, his health says it all, and thanks to her we lost the tribunal.

We went to a CAB again when we moved in together (which is when we snuck in through the unlocked door...!) and wanted to know what we were entitled to. They informed us that because I was on Incapactiy Benefit we couldn't get any other income related help. We lived off £106 a week for over a year, until Welfare Rights came on the scene, and informed us we were entitled to an Income Support top up, bringing our income to a point that we can actually survive. (We managed to get 3 months back payment after some strongly worded letters about the CAB, but we still lost a year's worth of Income Support, and we lost our savings, since we had to use them to survive.)


And so, thanks to funding cuts, we shall be making our health worse, to fight for DLA, which is about to be revamped and probably taken away from us anyway, just so we have a little bit of money left over when we've paid all the bills.

"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.

 

Genetics and ME.

Ask around the ME community and sooner or later you will reach the argument over the genetics with ME; both with the susceptibility to it, and the risk of passing it on to your children.

I view ME as an umbrella term. The variety of symptoms, experiences and triggers do not point to one distinct illness, but a multitude of undiagnosed problems with the primary symptoms of fatigue and pain.

However, I believe that there is a genetic disposition to developing ME. Why?

I have three siblings. Two of them developed ME in 1989, one recovered in the last 5 years, and the other is nearly recovered. (Although, interestingly, all three of us have had slightly different symptoms.)

Two of my cousins, on either side of the family, have been query ME, as have Uncles and Aunts.

I realise that's just one family, so let me throw in another example.

My sibling who has recovered from ME is married to someone who developed ME at a similar time to him. She is also nearly recovered now. At least 2 of her immediate family members have ME.


On the other hand, my husband is the only one affected in his family. It's not purely genetic...


I view the genetic side of things more as a disposition towards developing ME, rather than anything else. Of course I worry our children will develop ME, but they'll just have to be a bit more careful than other children would. That doesn't mean wrapping them in cotton wool, but it means letting them recover from every infection fully, and it means monitoring the effect of vaccinations on them from the beginning. I believe ME often starts when the immune system becomes overloaded - that can't be avoided initially, but it can be helped.

 

"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!