Tips for dealing with people in pain

I'm taking this from a Facebook group. The author is apparently unknown. It's highly relevant to myself, as I am sure it is to many M.E.  and Fibro patients. For me it's Hypermobility that causes me the most pain though, so point 11 is particularly poignant.

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening
and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

One step forward, two steps back.

In 2010 I was still a patient under Dr Niklaus. His search for an M.E. specialist in our area had proved to be fruitless. As such he suggested I contact the M.E. Association to enquire as to whether they could recommend a clinic in our vicinity; then he would refer me privately. We were advised that The Fatigue Clinic (also the Diabetes Clinic) at the George Eliot Hospital in Nuneaton was the nearest well referenced specialist that would suit me. As such, Dr Niklaus made this referral.

Part of the reason that my GP wished to refer me privately was because we knew I would not remain under his care for much longer. I was in the process of getting divorced, and the house I had lived in for the last eight years was up for sale. Once it sold, the reality was that I would no longer live in the area as I could not afford to do so on my own. So, we were a little perplexed when eight months later we still had not received any word from the clinic at all. Dr Niklaus chased up the appointment and found that I'd been placed on their NHS waiting list. The waiting list was amazingly long, because Dr Patel is very popular, but this did at least mean that I wouldn't have to pay for the appointment.

Eventually I had my first appointment with them in March of 2012. The doctor I saw was newly qualified. She had not heard of M.E., and told me that I had been ill for too long; that there was nothing she would be able to do to help me. I was absolutely gutted; I'd spent the last year hoping that they would be able to help, and the result seemed to be that I'd wasted a lot of time.

I was therefore rather surprised when I was called in to the hospital a few weeks later for adreno-cortisol tests. I explained to the doctor performing the test that I had lost a pregnancy a few days previously, so the test results may be a little wonky.

I had half expected this test to show something. I had previously asked Dr Niklaus if we could look into Adreno-Fatigue Syndrome, but we never actually got around to doing so.

Three months later I had another appointment with the clinic. This is when I met Dr Patel for the first time; my specialist. He has an amazing manner. He's humorous, and related to me very easily. He discussed the findings with me and my partner in terms that we both understood with ease. The adreno-cortisol had not found any adrenalin related problems. However, when they did the test they used the blood sample to run further tests. These tests had given some results.

Firstly, my Vitamin B levels were low.

Secondly, my thyroid hormone conversion does not work efficiently. Hypothyroidism and hyperthyroidism are common illnesses that most people have heard of. I've been treated for Hypothyroidism for years, as my T4 levels are always low. The tests that Dr Patel's clinic ran showed that despite raising my T4 levels artificially, my T3 levels were still low. Our bodies create T3 by converting T4 into it. My body does not do this properly. It is a less common problem. The treatment for it is a drug called Liothyronine. Only specialists can prescribe this. With good reason.

I was supposed to see Dr Patel again three months later, taking with me results from another batch of blood tests that would assess how well the Liothyronine (and Vitamin B injections) was doing.

For the first few weeks on Liothyronine I felt on top of the world. It was amazing; as if my body had been starving for this drug all my life. I started fantasising about getting my life back on track, building a career, having hobbies etc. I was brought back to earth with a bump, when I started to feel quite ill. I just assumed that it was an M.E. relapse. It replicated it in almost every way. I was sensitive to sound and light. Every movement I made, made me feel seasick. I ended up lying on the bedroom floor for days, feeling too unwell to move, eat .. anything.

I don't remember how, but I got myself to the surgery to have the blood test in preparation for the specialists appointment. A day or two later my GP phoned me. The lab had contacted him as a matter of urgency; my blood sample had showed extremely toxic levels of T3. I'd been poisoned. This certainly explained why I'd been feeling ill. I stopped taking the Liothyronine straight away, but it took a while for me to recover.

As such, I was not well enough to get to the next specialist appointment and had to reschedule.

Please note: I do not blame Dr Patel for the Liothyronine overdose. The blood sample that lead to his prescription of this medication was taken when my body was in a state of utter turmoil; when a body loses a pregnancy all sorts of things happen to the endocrine system. It was not Dr Patel who performed the adreno-cortisol test. I think the doctor who did, forgot to write on my notes the circumstances. As such Dr Patel was unaware.

I've just had the rescheduled appointment with the clinic; a year after my last appointment. I am, once again, a little less than impressed.

As with most hospital appointments I was called in to an office to have my blood pressure and weight taken. I explained to the nurse that she needed to take my blood pressure standing up as well as sitting down because I suffer with Orthostatic Intolerance. She ignored me, only taking it when I was seated.

We were then called in to a doctor's office. I was confused. The doctor didn't look at all as I remembered Dr Patel. And his manner was significantly different. It wasn't until my partner said to him "We were expecting to see Dr Patel" that it clicked. He introduced himself as Dr Nair. (And for the record, they look nothing alike; it's simply that I was struggling with brainfog at the time). He sat and stared at us for what felt like an age, eventually asking us what we wanted from him. I didn't know what to say. I was totally confused. As far as I was concerned I was supposed to be seeing Dr Patel; a specialist who was familiar with my case.

You see, when I left the area I had been living in, under Dr Niklaus's care, I was fortunate enough to fall under the care of an absolutely fantastic GP. My current GP personally knows Dr Patel. As such my case has been discussed a little during private functions. I had actually been really looking forward to making breakthroughs with Dr Patel and my GP. My GP and I had discussed at some length what I should discuss with Dr Patel, and what to ask of him.

Dr Patel had prescribed Gabapentin for me, at night, because my daytime medication, Tramadol, keeps me awake. For about six months it worked really well, but it's effect has been wearing off over the last few months. As such we wished to suggest that I move to a low dose of Amitryptiline. I explained this to Dr Nair. He nodded and said he'd write me a prescription for it, and scribbled some notes.

A Sexual Health clinic had suggested that I see an endocrinologist because of a totally unrelated problem. My GP explained to me that Dr Patel is an endocrinologist, so when I see him, to raise this issue, asking him to test my progesterone and oestrogen levels. So, obviously, I asked Dr Nair for these tests. He nodded, scribbled some notes, and gave me a slip to take to the hospital's phlebotomy laboratory to have some blood taken.

He had absolutely no idea of my history, asking me to tell him. When I explained what had happened with the Liothyronine he smirked and said to me patronisingly "So you feel you were poisoned!" whilst scribbling some notes. This riled me. No! I did not FEEL I had been poisoned. My blood tests had showed toxic levels of hormone. I had actually personally thought I was just having an M.E. relapse. He's the perfect example of a doctor who simply doesn't take what patients say seriously, assuming that he automatically knows better.

My partner and I left his office and sat down outside. We were asked by one of the staff why we'd sat down, so we explained that we were waiting for the prescription, and asked what to do with the blood test slip. He should have given me the prescription for Amitryptiline while I was in the appointment with him. And of course, the hospital phlebotomy clinic had closed for the day; the blood slip he'd given us, only being usable in the hospital. Not only that, but he'd only requested T3 and T4 levels to be taken. There was no suggestion of Progesterone and Oestrogen.

One of the nurses who had been behind the desk took the blood sample for us; the first time she'd done so for months, or years, she told us. (I hardly felt it, however). My partner was absolutely livid. He demanded that we see Dr Patel, since I'd been waiting a year for this follow up appointment, which had ended up being a total waste of time. He'd had to take time off work to take me to the appointment. Unfortunately though, Dr Patel had rounds after clinic; and still had a queue to get through before clinic would be finished. There was simply no way that we could see him.

Today I saw my GP. He wasn't particularly pleased that I'd not seen Dr Patel either. He's heard of Dr Nair, but nothing good. At the moment I'm uncertain of whether to make a complaint against Dr Nair. I don't wish to complain against the clinic, because I value Dr Patel's treatment too highly; though I do think it out of order for the nurse to ignore me when I tell her I suffer from OI, and for us to be sent in to see a different doctor without any warning. But when someone has waited a year for an appointment, and ten years to see a specialist on their condition, to be treated the way that Dr Nair treated me is totally unreasonable. Because of Dr Nair, I went a week without pain medication; which, as you can imagine, was an arduous experience. I would prefer for another doctor, with a similar approach to Dr Patel's, to take his place. With two doctors in the clinic whom people desire to see equally, those waiting lists would hopefully reduce.

So anyway, once again, I'm waiting to see Dr Patel. And my poor GP is trying to tweak my medication with me while we wait.

Let's judge the disabled!

Honestly, I don't really know why I'm writing this post. I feel like I need to warn people I suppose, that's all.

A few months ago I contacted DIAL about my DLA application. I had just been turned down when I applied myself, and had absolutely no income.

There is a huge stigmatism around benefits in the UK at the moment. As such a lot of genuinely sick and disabled people are being declined benefits that they genuinely need. The media has done a very good job of turning every day normal people against the sick and disabled. People who would normally help someone they actually see in distress are begrudging those people the tiny amount of money that they need for simple things like food. People are starving, food banks are at breaking point. Anyway ...

I am disabled. I've spent years trying to deny it to myself, but in the last few years I've been forced to admit it. Even my family, who's had their head in the sand over the fact that I'm ill, has started recognising that I have these problems. I'm disabled!

I have M.E. and Fibromylagia. I am hypermobile and have recurring back problems. I have PSTD and suffer with severe anxiety attacks. I am in constant pain, which is only partly relieved by very strong pain killers. The severity fluctuates; on my best days I can potter about the house a bit, maybe even go for a walk. On my worst days I have to knock myself out for the day to avoid the agony. I suffer with fatigue and exhaustion the like of which you can only imagine if you've actually experienced it yourself. Walking is painful. Remaining in any position for more than 15 minutes is painful. The fatigue means I struggle to meet any expectations placed on me (doctor's appointments, shopping trips, taking medication at designated times, etc). It means that I frequently have problems performing simple tasks or formulating sentences. I'm often mistaken for being drunk. (I don't drink).

Being disabled is hard. Even if you're not disabled, having a long term illness is hard. You have doctor's and specialists whom you try to keep happy. It's human nature to wear a mask, leading people to believe that things are better than they are. That doesn't apply any less to sick or disabled people. If anything it applies more.

So, you spend most of your time trying to put a positive twist on all these difficulties ... and then you have to fill in forms describing how bad things are. It is very hard to make such a huge mental u-turn. You have to scrutinise every little thing you do. For me it includes measuring how far I walk between each tick - because every tick can cause me to fall when I don't have my stick. Before filling in the form I didn't realise how frequently I was actually ticking! You end up learning that you're far more disabled than you thought you were. Really, most of us are actually in denial until we go through this process properly. As such it's very demoralising, and often causes distress and depression.

You can imagine how easy it is for those who wish to commit benefit fraud, can't you. They don't have any of these difficulties to face, just a little research into a condition, tick a few boxes, tell a few lies.

So, as I was saying, DIAL helped me with my recent DLA application. Honestly, with everything else going on in my life at the moment I'd totally forgotten about it (people dying, and my mother having strokes). I was resting in bed, my body is currently inflamed with a Fibro flare, which I have to rest off. At approximately 1pm I received a text from my boyfriend telling me that he'd had a call from someone regarding my DLA application. She told him that she'd been trying to call me, but I wasn't returning her calls. Funny thing: I've not had any missed calls! He took her details and texted them to me.

I phoned her back. Obviously she has an advantage over me, in that she knew where she was phoning from and why she was phoning, both pieces of information she refused to give me. Understandably she needed to ask me security information. Having dealt with the DWP over the last few years, both for myself and for others I'm way too familiar with how this works. She did not stick to protocol. For example, she only asked me my date of birth. Part of that protocol is to ask you which other benefits you're on - anyone trying to fake another person's ID is likely to have checked out their date of birth, address, all the obvious things; asking what benefits someone is on is not obvious, so it's an easy way to catch people out. She didn't ask this. Instead she said to me "You're receiving Carer's Allowance, aren't you!".

When she asked if I was receiving Carer's Allowance, obviously I answered that I am, because I am. She then asked me how. I did not understand this question. She went on to elaborate that my form states that I have zero mobility, and asked how I manage to care for someone if this is the case. She did not give me time to answer. Instead insisting "Do you have zero mobility or not?" Again, she did not give me time to answer, instead moving on to asking me about wheelchairs. She told me that I use a wheelchair when I go out, but that my partner cannot push it, so told me that I must push it myself, despite reading off the form to me quoting a part where it says that I can not self propel.

She kept going like this, not allowing me to get a word in edgeways, putting a twist on everything in a snide smug tone. I ended up raising my voice over her to try and communicate my actual answers to her questions. Obviously, I do not want her twisted version of things going on my record. I do not want to be turned down for DLA again, unless it's legitimately. Plus, I do not want her lies on my record as they will be referred to for future assessments. It's because of a medical assessor lying on an ESA assessment a few years ago that I have these problems to start with.

She told me that my form stated that I have expensive night time needs. I didn't and still do not know what this means. I tried to ask her, but she kept going. By this point I was crying and shaking, so I asked her to talk to my support worker instead of myself. She told me that she doesn't have to do that. I told her that I was officially asking her to. She repeated that she doesn't have to do that. Then, while I literally sobbed the request again to her, she hung up on me.

A pretty bad panic attack followed. I really do not cope well with confrontational situations. I sent a fairly vivid description of what had happened, to my boyfriend, via text, asking her to phone her back again. I also dragged myself out of bed and sent my support worker an email about it, crawling back up the stairs to bed afterwards.

My gripe is this: she knew that I was at home alone, she knew that I was bed bound at the time I was speaking to her, and she should have known that I suffer with extreme anxiety. It was her choice to push me, and deliberately wind me up the way she did.

When my partner spoke to her afterwards, firstly she told him that she wouldn't talk about it with him. She told him that he had refused to answer her questions when she had phoned him previously. This was untrue; she didn't even ask him to answer questions, she'd only said she was having difficulty contacting me. He told her that he had caused a massive panic attack, explaining that he now had to leave work to sort it out. She claimed that she did not know I suffer with anxiety. Every piece of my supporting evidence describes severe anxiety and PTSD. My form mentioned anxiety throughout. She basically told him that she didn't look at either my supporting evidence or my form before trying to contact me.

I suspect she speaks to every applicant in exactly the same way she spoke to us. I also suspect she never reads their information until she's speaking with them, thus causing a lot of anxiety issues for people similar to myself. That woman should lose her job. A position dealing with people who are sick or disabled needs someone with at least a little empathy, particularly if that job requires judging them and being responsible for their future .

So, anyone applying for DLA, please consider yourself warned about the phone call you might receive during the application process. You don't have to put your phone number on the form. Eliminating it will avoid this horrific part of the process.

An amazing story!

Please read Sarah-Louise's story. You are welcome to re-post her story on your own Facebook, tweet the link to my blog, whatever; let's raise awareness of how severe M.E. can be.

If you would be so generous as to sponsor her too, you will find the link after her story. She's one of the most amazing people I know, so sponsoring her means a lot to me.

There is so much I want to say! Before I became ill I hadn't even heard of M.E and the first twelve years of my life were magical and very english. Then I had a vaccination against meningitis c and my health very quickly began to fall apart. At first it was just all kinds of aches and pains, dizziness, forgetfulness, nausea, the occasional fainting spell and a lot more tiredness but within two years I had a constant migraine and I struggled to drag my legs around because they were so heavy.

Soon I couldnt walk at all and I began to 'freefall' until I was blind and had no memories. I lost all of my words and my ability to understand other people speaking. I was so exhausted even when I woke first thing that it felt like I was trying to lift buildings to try and move.

I was housebound for a year and by the end of it I could stand for 30 seconds and manage a few painful steps, but then I relapsed again and became bedbound. I didnt sit up for four months, I barely moved and I couldnt talk. I had no sense of touch and no strength in my body. I suddenly perked up in April 2004 and could sit up and read a little, I was so excited. In July 2004 I woke up to find my whole body 'on fire'. So hot it felt like I was melting, so painful I wanted to scream and scream and scream. I honestly didnt think I could bear it for one minute. So far I have been on fire for eight and a half years and counting....

At first the pain, the heat and the pressure-which made my head feel like it was gripped in a vice- was so intense that I couldnt move or speak again. For six and a half years I was silent and still, simply enduring, my hearing was so sensitive that I had to wear headphones all the time. My parenst added another door to my room and triple glazed the window. every noise was still excruciating. I had blackout blinds because the light made me physically sick. I released a strange chemical that smelt acidic and clung in clumps to my hair, pooling in white/brown patches on my skin.

I woke one day to find my hands curled in fists, rigid, paralysed and I couldnt open them.

Nothing seemed to change until 2010 when they opened enough for me to be able to use my 'claws' and I began to be able to do little things despite the fire. like read and write and go online.

I am still bedbound, although I had a little time when I could move around the house last year, and the fire has been particularly awful again this last year.

Im 25 years old and I so want to live. I could write booksworth on everything thats happened, but really all I need to say is, Invest in M.E are actually doing something to help people like me...and their are hundreds of thousands of us. We all fight the same dragon, we all want to beat it so we can be free.

And I cant even tell you how heroic my M.E friends are, what they go through and also how kind they are to other people! If you dont know them, you are missing out!

With them and the girls from my old schools, and other people Ive met along the way, I feel that I have a life rich in people. But I am a young, free spirit trapped in a body that will not work! Invest in m.e want to change that.

And as to losing the 50 lb, its something I really need to do, although I do not know who is going to keep mr.kipling in business without my help ;)

Click here for Sarah-Louise's Just Giving Page

Amazing isn't it. Can you imagine being totally bedbound, unable to move, you can't cope with light, or sound, and your body is burning from head to toe - for years? 

I can't. I have M.E.. I've experienced what Sarah-Louise describes, but for me it was only a few months. I simply cannot comprehend enduring it for what must have seemed to be endless.

Sarah-Louise has suffered more than anyone should in one life time, yet all she wants to do is give! She's one of the most encouraging people I know. She's that little light blinking away at the end of the tunnel. So, please .. help her raise the money for IiME. It will make her so happy.

Hello!

I am well aware that I have not made any updates for a while. There's a good reason for this. Well, two good reasons.

One is personal. I think I should be honest with myself and say I'm relapsing. I keep saying it's a crash, but it's been ages now. I had a shower yesterday. That was yesterday's activity. This morning (morning by my terms is usually about 1pm) I spent ages looking for my trousers. I eventually found them; on my legs. I'm not sure whether that means I slept in them, or whether I'd already put them on and had forgotten about it. 

One of the things I hate most about M.E., is that when they hand you out the long-term-sick card, they also replace your brain with what I can only presume is liquid nitrogen. I may well be stranded in bed, but I would at least appreciate the ability to control what the hell comes out of my mouth! It's so effing well frustrating; while I lie in bed everything makes sense, yet when I try to rise, to share the ramblings that have been so perfectly articulated in my head, I cannot remember a single thing. 

Anyway, the second reason for being distant recently is that I have pretty much lost hope. In the past I have shared articles as they have cropped up, to illustrate what is happening in this country, share my opinion, my view, etc. But now ... 

Every day there is more and more being written. Every day there is more coming to light. Not just in regards to benefits, but the government. I never wanted to blog about the government, but it's all tied in to one. They're changing .... everything! They are deliberately making the poor, poorer, and the rich, richer. They're taking everything that this country has worked so hard to develop. Privatising the NHS. Selling out to commercial industry. Changing laws to suit their agenda. Creating a secret court, the like of which I'd only heard of in reference to nightmarish stories from the Soviet Union. Honestly, I believe it'll only be a matter of time before the government decides we're no long a democracy.

My fight is gone. What they're doing is so totally beyond the power of people like me, that it seems more like an act of futility, possibly even masochism, to try and fight back. I wash my hands of it.

I'm totally and utterly powerless. I have no income. I have no means of getting any income. I do not believe it is coincidence that people who like myself, have tried to level the playing field, just that little bit, find that their records have been messed up, their MPs don't care, etc.

So ok, government ... I surrender!

M.E. Herbalist

I bring to you today, the story of another small trader, who has M.E.. If you're interested in herbalism, or seeking herbal product from someone who understands the condition, Merionwen is the business you want to look at. Here is her story:

Around six years ago I was married, had two smashing children and a job I loved. I had spent years working in the heritage and tourism sector. I provided costumed interpretation for a variety of heritage sites. Bringing entertainment to education and a sense of fun to stuffy museums. Prancing around castles being everything from the cook to the lady of the manor.

I was lucky enough even to be able to involve my children. It was long hours and involved a lot of background research but I loved it.

Then disaster struck. I had been diagnosed with gynaecological problems and severe anaemia. I just couldn't seem to find any energy.
I continued to try to work but my lack of energy started to show the cracks in my marriage.

I devoted all my time to my children foremost and then my career. I expected support and understanding from my husband but that wasn't to be.

Eventually the marriage became untenable and we went our separate ways. I suddenly found myself cast in the role of a single mother. Financial support was non existent and work pressure increased.

This stress was then compounded by my father falling ill and what seemed at the time as a minor car accident.

I suffered serious whiplash and I was left with back pain that never seemed to recover.

Next came the constant round of tests and doctor's appointments. I kept returning asking for blood tests and a reason why I just couldn't seem to get back on my feet. I was constantly bone weary but this was coupled with the searing pain that never seems to settle in any one place. I had constant muscle burn and my fingers and toes would feel so swollen I couldn't walk or pick up a cup of tea.

this all came to a head one day when I found I couldn't wash my own hair and cried out with pain when my daughter hugged me.

So back to the gp and a long and frank discussion. It was suggested I had fibromyalgia coupled with cfs.

Further tests proved this so.

I went on to be prescribed a battery of SSRI's and painkillers.

Over the following two years I put on five stone in weight and had to give up work. I just couldn't cope with being a single Mum and live with this illness all the while keeping up with my career.

It broke my heart the last time I said goodbye to my workmates.

I felt at my lowest ebb.

But, things were about to change. Almost like a bolt from the blue I was to meet my current husband to be, Andrew. We were sat at the table of a mutual friend while I expressed my loathing of the male species. Then he smiled and made me tea.

There is more to the story than that but lets just say over time I fell deeply in love.

He opened up whole new way of thinking for me. When discussing the medication it was him that first made me question whether the side effects were not as bad if not worse than the illness itself!

I am pleased to say I am free of all synthetic medication. I take a variety of supplements and have made vast changes to my diet.

Don't get me wrong. I am by no means cured. But I do cope! Rather well at that!

It was also himself who asked why I was not trading as a herbalist. One of the key parts I have played in the past is that of an herbalist. I know the subject back to front.

I told him how EU law suggested I needed a formal qualification. So he asked "why not get one then". Frankly I had no answer to this.

I went on to study Phytotherapy at degree level, a higher diploma in massage therapy, Advanced aromatherapy and most recently cosmetology (the study of natural skincare).

I am now proud to say my chosen career is that of an holistic therapist. I am able to work at my own pace and have a good client base.

However, that was never going to be enough. Over many years I have formulated and produced my own skincare products. These have been given as gifts of used by myself.

It is now time to turn the hobby into a business.

I am launching my own range of organic, natural skincare. IT is called Merionwen and is a business I feel very passionate about. four years ago I never believed it was possible to achieve these things and live with illness.

I have proved that that is not the case. I shall make success of this and I hope everyone else who has lived with any sort of set back can take heart and see what can come to pass.

I am attempting to get Merionwen on it's feet with a crowdfunder pitch. There are a variety of splendid rewards for anyone who invests.

What could be better than organic, natural, spa quality skincare?
Well all deserve a little pampering...

You can find Merionwen here:

The Crowdfunder Pitch

www.merionwen.co.uk 

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See the Invisible

When you tell someone that you have M.E., most people tell you that they knew someone who had it, who had got better. Presumably most of these people are mistaken, or they all knew the same handful of people, since the rate of recovery is extremely low. Having said that, if people see you leaving the house, they presume you are better. If you fail to mention M.E. every time you see them, they presume you are better. Most people just generally assume that M.E. is a mild condition, which most people recover from with ease.

It is not. 

I've actually had people ask me why they don't see any of these really really sick people. It seems a really dumb question. It actually says quite a lot about the image M.E. has, rather than those people being particularly dumb. For example, if you assume you have flu when you actually have a cold, then you can't understand why others with the flu are throwing up, sweating hot and cold etc. You understand? It's the same with M.E.; it is NOT this mild affliction that the public have assumed it to be. The people you have known, or do know, who have M.E., particularly if you've not met them online, are most likely to be very mild cases of the syndrome.

The serious cases, those with 'moderate' or 'severe' M.E. are seldom seen. Those with extremely severe cases often can't even use a computer, so you won't even meet them online. Imagine that all you can cope with is lying in a dark room, in silence, every movement hurts. You feel constantly nauseous. Your skin burns, freezes, and itches, for no reason. You can tolerate few foods, so have either been losing or gaining weight for the duration of your illness. You practically rattle from the amount of medication you're on. Your limbs feel as if they have weights on them, and you can't tell whether you're holding something or not as your hands are not only in considerable pain, but are frequently numb too. Can you imagine how totally isolated these people feel? What are they to hope for?

A friend of mine, has been in so much pain that she has not even been able to talk. She just discovered that she can talk again, so to celebrate she made a small video. It's extremely illuminating. Please, view it. You will start to understand where the invisible sufferers are, what it is like for them:

Hello, ummm. Oh, I've made this message about three times, this video, and I have managed to cry all the way through. I am so distressed today, and I am so on fire, and I'm so shaky, and generally scared by what's happening. It's also a very very personal video, and I promised always to be very honest with you, but it's quite hard, coz the British English girl gets all sort of .. she wants to hide! Also I am fully aware of the irony of making a message like this, when I look like the wreck of the ##. But, you know, I'm sure I would scrub up all right, honestly, with .. uh ... a couple of ship loads of make up, and a hair brush would be a good start!

Anyway, the thing that I wanted to say, was that, I'm very afraid of dying. I think about it all the time. Ummm, the pain is so unendurable, and so constant, that in some ways there isn't any reason to be afraid of dying, because it would be an ending to something that is, on a daily basis, unendurable. And everyone who has M.E., is enduring the unendurable all the time. And we find things to laugh about, and we have each others, and we have our families and things like that, but it doesn't take away that the pain is constant and unrelenting and bit of a spiteful bully really.

And, and, I think about dying, and it it it terrifies me because I feel like I'm unfinished. I feel like there is so much of my life that I haven't lived yet. I got ill at 12, and was housebound by 15. I'd like to go to university. I'd like to travel, and I'd like to kiss boys(!), and I'd like to hug my friends, and to learn to fly a plane, and go up in a hot air balloon. I'd like to ride horses, I'd like to write books, I'm mean there's just so much I want to do. And life is so beautiful. The idea of not getting to actually live it is quite heartbreaking. But, when it's really really bad, I think .. well I do believe in heaven. I would probably do all of those things in heaven, except for kissing boys. And, I can't tell you what a heartache it is to think that I might die before I fall in love, before I ever really get to kiss someone. I mean I have kissed people, but it was absolutely disastrous *laugh*. Well, perhaps I shouldn't say that in case they watch this! But, it was not a fairy tale.

And, I've never danced close to someone who really matters, and no one's ever fallen in love with me, or been tender with me, or made love to me, or any of those things. And it feels like such a heartbreak to me, that I may never get those things. And, when I'm in my bed, and the fire is everywhere, even breathing becomes a mission, that's often something I think about! I think "I can't die, I can't die without knowing what all those things feel like", and I hate the idea that, in this world, because of the way doctors are neglecting people with M.E., there are hundreds, if not thousands, of young people, dying without having such ordinary and beautiful things.

I really really don't want to be one of them. But, even if I am, there are others going through it too. I mean, none of them would want to be one of the ones who didn't get those things. And it just seems so appalling to me that so little is being done, when life is so wonderful, and we would have every opportunity to live it if we weren't ill.

Eek! My ESA50 form's late!!!

Are you filling in the horrible ESA50 form, hoping you'll be able to claim Employment & Support Allowance? Do you have that horrible big black line on the calendar looming imminently over you? Don't worry. You can rub that line out if you have M.E. or some mental health conditions (sorry, but I don't know which ones).

This subject keeps coming up recently. Mostly because people have still only been given four weeks to fill in their ESA50 despite Christmas and New Year being in the middle of it. A lot of people are running late with their forms and panicking. I knew I had read somewhere that people with M.E. needn't worry about late forms, but I couldn't remember where. Then I found that I had saved the information to my computer ... hoorah ... but doh! 

So, I apologise, I do not know where this information came from, but do please feel free to use it. Personally, I would not recommend running anymore than a week late with your form. If you are returning your form late copy and paste the information below into a document and submit it along with your form and a letter explaining your reasons for lateness.

DWP will insist that they do not give anyone a time extension for completing the ESA50.

This is contrary to their own guidelines. In a letter to the Countess of Mar dated 21 November 2011 regarding the Incapacity Reference Guide, and the flagging of ME/CFS along with mental health conditions, the DWP stated:-

"Therefore, for the avoidance of doubt I can be clear that the Department does not classify CFS/ME as a mental health disorder. The asterisk next to CFS/ME in the Incapacity Reference Guide (IRG) is not as an indicator of its classification, but rather to alert decision makers to the fact that a proportion of people with CFS/ME have symptoms related to altered mental function. Mental health condition and those that have mental function impairment as a feature are highlighted in the IRG so that appropriate safeguards can be put in place. These safeguards include not automatically rejecting a claim to benefit should an individual fail to return the related questionnaire, together with procedures for additional contact with the claimant during their application if required."

It may be useful to quote this to the DWP when you ask for an extension, in any case ensure that they make a note of your conversation on your records, or perhaps it is better to put it in writing to them, so that, if ATOS refer your case back to DWP as a non-returned form, then they should have to take this information into account before making any decision to end your claim.

The incapacity reference guide is here:-

http://www.hmrc.gov.uk/manuals/spmmanual/spm50600.htm

The correspondence with the DWP regarding ME is found here:

http://www.meassociation.org.uk/?p=9327

Should anyone know where this information came from, please let me know so that I can give the relevant credit.

No Knighthood!

Strip Professor Wessely of his Knighthood!

"We the undersigned wish to make it known that we believe the award of a knighthood to the internationally maverick and outspoken psychiatrist Simon Wessely, whose views on several serious illnesses are seen to be patently wrong, and are widely abhorred by the experienced patients he purports to want to help, brings the whole honours system into disrepute, and should be withdrawn before the progress of real science, makes finally clear to all, the folly of his particular and peculiar sickness beliefs."

I have mixed feelings on this petition. I've not signed it, and I'm not going to.

I do not like Simon Wessely anymore than the next person with M.E.. I do not like his views, I don't like his trials, I don't like the way in which he's manipulated the medias view on our illness, and I do not like the way in which he's labelled himself as a victim because he's been criticised. Every scientist receives criticism; I've never heard of any of them claiming victimisation because of it though. Wessely is a nasty piece of work whose first priority is his reputation, and second priority is protecting his research. His patients don't even factor.

So when I see that he is nominated for a knighthood I am not happy. Not impressed. It shouldn't have happened. As it happens I actually like our Queen. She gives off good vibes. It's not her fault that she was born into monarchy. I certainly don't support the abolition of the monarchy. I feel very sorry for her that she has to be in the same room with The Weasel though. I would like to think that there was some chance of her doing the research behind knighthoods, but in reality someone else will do that. No doubt it Simon minions who nominated him. It certainly wouldn't have been any legitimate M.E. doctor, or an M.E. patient.

But I can't make myself sign it. Professor Wessley has gone out of his way to label people with M.E. as being crazy. He hasn't merely claimed that M.E. is a mental illness, but because people object they are crazy. He's over-exaggerated the number of people who complain, and the manner in which they complain. He overplays his hand. He knows he has more power than any of us will ever have. It must be fun to kick people when they're down.

I do not want my name associated with this petition. I don't want to be among those he sees as victimising him. I don't wish to give him that pleasure. He doesn't know me from Adam of course.

The fact that the petition is worded badly is besides the point. I could pick it apart easily, making it clear why it would never get anywhere, legally, but that isn't my point, unusually. The point is that the truth will out eventually. Wessely will be seen, by history, as a very nasty man. He'll be seen as someone who deliberately prevented very sick people from being treated. With any luck biomedical research will show this within our lifetimes, and have him called up on it. But again, not my point.

My point? What is a knighthood? These days it doesn't actually mean anything. It's an ego boost for him. It will mark him in history. And because of who he is, he will be remembered as being a creep. That isn't what he has aimed for, obviously, so by being knighted I feel he's stabbing himself in the foot really.

My benefit claims

I've been working on my own benefit claims over the last month or so; ESA and DLA. I have to say that I am sincerely disappointed with the DWP. Until now I had pretty much given them the benefit of the doubt; I thought that the employees were not to blame for how the system works, but as much victims of it as the claimants. Just part of the machine.

I can now categorically tell you that, sometimes, they do not even look at our application forms before making a decision. I realised after posting my DLA form that I had not signed it. I therefore fully expected it to be turned down, with a letter asking me to resubmit it, having sign it. However, what I actually received was a fail based on the medical assessment I had for ESA 18 months ago.

I will point out at this juncture, that the medical 18 months ago was over-turned immediately. It was wrong, the assessor had made unreasonable assumptions based on no evidence, which I clearly illustrated to the DWP as soon as I received her report. I received ESA from a reconsideration, and placed a complaint against the assessor to Atos. (Atos of course defended her).

While it is outrageous that they are using outdated evidence, that is not my point. Had they actually looked at my form they would have realised straight away that they could turn it down based on the lack of signature. They didn't look at it! That is disgusting. Do they have the slightest idea of how much effort, how much energy, how much blood sweat and tears, go into those forms? I severely neglected Christmas preparations because they expected the form back just before Christmas; my waking hours were utilised on the form (plural actually, as I had my ESA50 too). They obviously do not care. I wonder how many people are declined at this stage, not realising that their form has not even been looked at, and not aware that they can appeal. I wasn't aware that you could appeal the first time I was declined after all. No one actually teaches you how the system works.

I can't help thinking that it would save them money if they didn't faff around like this, playing silly buggers. If they actually processed peoples claims properly when they were first sent in, based upon their form and accompanying evidence, surely there would be less need for appeals.

Unfortunately, my experience with ESA is no better. In fact I think I would go as far as to say it's worse. It's a lot more complicated though, so if you cannot follow what I try to explain now, don't worry too much about it.

Whilst getting divorced in 2010 I applied for ESA over the phone. The DWP friendly telephonist I spoke with checked that I had enough National Insurance Credits to claim Contributions Based ESA. My ex had tried to scare me, telling me that I hadn't paid enough of them, which is why we checked, and why it is so memorable that I did have enough of them. (My ex was trying to scare me regarding money in a lot of ways). So, I applied for CB-ESA, got through the application process, and started receiving ESA basic rate.

At the beginning of November I moved into my own flat (call this location A), so changed my address over the phone with the DWP. A couple of weeks later in November I received my divorce settlement. I phoned the DWP to find out if this had any baring on my claim, as I had heard that it could do. I was told that I would no longer receive ESA payments, but that my National Insurance would still be credited. It's a shame that I did not know the system so thoroughly then, as what he told me was wrong and I would have recognised it.

In December I went to stay elsewhere (call this location B) while problems with my flat were sorted out, so I phoned the DWP and gave them the new address again. At that time I was not informed of any problems with my claim.

I moved again in March due to problems with location B, and location A never got sorted out (so call this location C). I contacted the DWP again to give them the address for location C. I was told that they could not change the address on a closed claim. I asked when the claim had been closed, and was told it had been closed in the November, when I had told them about the divorce settlement. I was astounded, as I had not been told in November that he was closing my claim, nor had I received any paperwork to that affect.

When I had returned to location A to check I'd got everything, I found two letters from the DWP; one summoning me for a medical assessment, and another telling me that because I had not attended the medical assessment my benefit would be revoked. They were dated February, and expected me to be at the medical a few days before I found the letters.

So they had screwed up:

• they should not have discontinued a Contributions Based ESA claim based upon a divorce settlement. Contributions Based ESA is not means tested.
• if my claim was closed in November 2011, and you cannot change the address on a closed claim, then I should not have been able to change my address in December.
• when my claim was closed, I should have received paperwork to inform me.
• if my claim was closed in the November, I should not have been summoned for a medical assessment in February.

So, recently, my GP gave me a fit note to cover me for two months. He wanted me to have some income. I wasn't sure what you do with fit notes, so I phoned the DWP to ask. I spoke to one of their helpful telephonists (as opposed to the unhelpful ones), who tried her best to initiate an ESA claim for me, but just could not do it. My record was screwed. Every time she tried to start a claim the computer gave her an error. She probably should not have told me that really. Anyway, she put a request in for me to be sent an ESA1 in the post so that I could fill it in manually and return it myself.

I received the claim pack for Housing Benefit.

I received the claim pack for Carers Allowance.

I received the claim pack for some Disability thing I've never heard of.

Eventually an ESA1 arrived.

On the ESA1 you have to decide whether you wish to claim for Contributions Based ESA, or Income Related ESA. Being aware that my record was a complete mess I thought I'd better check what state my National Insurance was in, so, again I phoned the DWP. I was given a different number to contact the NI Office. I spoke to a lovely man who told me that I have three years of Class 1 credits, should have no problem placing a claim, and that he was disgusted that I was having to do the DWPs legwork for them. 

So, confident that they'd screwed my record up enough for me to claim Contributions Based ESA, I ticked that box. Surprise surprise; I received notification back that I do not have enough NI to claim Contributions Based. I already know I can't claim Income Related because my other half's earnings are above the threshold, despite the fact that his outgoings don't allow him to support me.

I'm stuck in a rut. I have made my MP aware of the situation. She is trying to get my National Insurance sorted out, but I suspect that when it is sorted out it will still not be the right kind of credits to claim ESA. She has also given me a supporting letter for my DLA reconsideration, as she was already aware of my health before any of this happened. 

Over the last few weeks, working on these claims, I have found out a couple of things that people with M.E. may find interesting:

M.E. claimants, along with claimants who suffer from mental health conditions, are given time limit concessions. That means that they are expected to get their forms back a little late. The DWP telephonists aren't actually aware of this, so if you're phoning the DWP to inform them of lateness, you'll need to explain it to them. It's also a good idea to remind decision makers in a note with your claim. I wouldn't advise returning your form late if you can avoid it, and certainly not weeks late.

M.E. is assessed as CFS by Atos. The Atos guidelines for assessing CFS do not tell the assessor what kind of condition it is, but give them the choice as to whether they assess it as a physical condition, a psychological condition, or a mixture of both. Personally, I don't like this. M.E. is recognised by the WHO and NICE as being a neurological condition, with neurological indicators. The DWP is supposed to use doctor's to assess neurological conditions, but M.E. is exempt from this. I was assessed by a nurse. I know others who have been assessed by physiotherapists, health workers, etc. The reason for this is, apparently, that people with M.E. do not show neurological indicators. Well; I know I do. I also know that they are described in some detail on my form. As such I SHOULD be assessed by a doctor, but can guarantee I will not be. 

Honestly, it probably doesn't make any difference. I just feel indignant that M.E. is degraded in this way.

Harvey's Hammocks

We recently discussed an online store that has been set up by an M.E. sufferer because the benefits system has failed her. Today we have an M.E. (and Fibro) sufferer who has also set up an online store. In this case she has set up the store because she wants to feel that she is still making a contribution to society. As with many of us, she feels that being ill has taken away pretty much everything that her life was previously. She's building something, moving forward, out of a horrible situation. 

Harvey's Hammocks

Harvey's Hammocks is a small animal hammock shop run by a Fibro and ME sufferer.

Harvey's Hammocks provide a wide range of hammocks in lovely soft wools, each is washable, can be easily repaired if chewed, and has a lot of stretch. From the basic square hammock, to multi-pocketed creations, they even offer a customised hammock for any who are interested.

Offering an easy solution for genuine rescues as well, we provide a massive 15 hammocks for just £30!

I spend alot of my time bed ridden due to ill health and found most of my former hobbies were now impossible. While the Fibro and ME has taken alot from me I have been lucky in that my hands are mostly unaffected unless it is a severe flare up. By using support bandages and strapings to help with the pain and the shakes I have found I can crochet.

While I can crochet, the big projects like blankets and that, are beyond me as I have no strength. So I found myself looking for something to do. I have a group of pet rats, and we all know rats love hammocks, but being ill affording the ones on the market was becoming expensive as they were hard to repair when broken and my rats love to "customise" their hammocks.

I tried different sizes, shapes and styles and found what worked and what didn't and soon was enjoying making hammocks of all types that I had too many. This surplus went out as "testers" to friends and got a positive feedback. So wanting to feel like I make a contribution to life and not feel so useless and isolated as ME and Fibro can do to you, I decided to open up an online store as a trial.

There are of course a few things that may need explaining. Rats make lovely pets, so if you were horrified at the thought of pet rats I really do recommend that you contact her to ask about rats as pets, because you will be very surprised at how amazing they are. A hammock for a rat is not quite like a hammock for a human. They usually consist of a square of fabric with some form of hook attached to each corner, which can then be suspended inside a cage. When she says that rats like to customise them, she means that they chew holes in them. I would also like to point out to readers that other species appreciate these too, so if you have ferrets, rabbits, cats, mice, hamsters, degus, etc, that you may be able to support her work. She will crochet to order!

Social Services Stole my M.E. Child

Sonia Poulton is searching for a family.

I NEED A FAMILY. Not just any old family, mind, this family needs to have experienced the nightmare of what it means to have their child diagnosed by a medical doctor as having ME, taken from the family home as part of Child Protection order. The child then needs to have been returned to the family home because it was WRONG for Social Services to have taken the child in the first place.

If you know such a family, please contact me and I will pass on your details to her. Hopefully she will give me a better way of contacting her yourself in the near future, but for now, that's it.

Sonia, in case you are unfamiliar with her work is a UK journalist who has been working extremely hard to bring the suffering of people with M.E. to light. She totally gets it, which is very rare for anyone who doesn't have M.E., and she has the voice, and is in the position, to do something about it. An absolutely awesome lady. She's also been working hard on illuminating the problems with the benefits system. She doesn't have to do either of these things, but has chosen to. So, if you can help with her search, please do.

Her full post (on Facebook) was actually as follows:

I have a problem and I'm adhering to the school of thought that says if I share it then I should also halve the burden it is causing me, so here goes...

I NEED A FAMILY. Not just any old family, mind, this family needs to have experienced the nightmare of what it means to have their child diagnosed by a medical doctor as having ME, taken from the family home as part of Child Protection order. The child then needs to have been returned to the family home because it was WRONG for Social Services to have taken the child in the first place.

That precise requirement is what I desperately need in order to fulfil the demands of producers on a TV news report I am working on.

Some people are not happy that we need that type of extreme example - and I understand why - but in order for the public to 'get it' the media frequently has to SHOUT an issue. This is one of those times.

This report is designed to shriek so loudly that those watching it will have no alternative but to wake up. It will not portray ME as only worthy if it is extreme but it needs to shock people out of the stupour of believing it's not a serious illness. It is. It can, and has, killed. How much more serious does it need to be?

So far I have been unable to get the family we need. I have other families, with less troubles, but I need others.

It's not that these families don't exist - sadly they do - but they have been filled with so much fear and anxiety about having their child taken away that they are scared to speak up about it, even anonymously. Which is super sad, really, because it means that they are unable to help those who are enduring that misery right now.

So that's my very long way of explaining I have a problem and if anyone can help in any way, either by knowing a family of this description or re-posting this status in any relevant places, I would be grateful.

We need to be able to show the UK how people with ME are being treated and unless I can get the example required then I fear it will not happen. Thank you.

The Funky Orchard

There are many people with M.E. who are not in receipt of benefits. There are different reasons, though the most common is that M.E. is not a well understood illness. When someone writes on their ESA or DLA form, or even their blue badge application that they have M.E., the assessor doesn't understand what that means. Unless the applicant has had help from someone who understands both the benefits system and M.E., they are usually screwed. As such they are turning to alternative measures to try and scrape enough up to live by. The Funky Orchard is just one such example, I will let her tell you her story herself though, as it is a little different.

I have just set up an online clothing business called The Funky Orchard.

I could not receive ESA because my husbands earnings were too high. The DWP were supposed to be crediting my NI, but did not. So when my husband left, and I reapplied for ESA properly, I could not get it due to the fact that I did not have enough NI.

At first I was very scared. I was living on my savings, extremely aware that they would run out within a year or two. I didn't know what to do, or who to ask for advice. Then one day I was looking for a specific item of clothing online and suddenly thought "This is so hard to find, yet so many people would like it. Why don't I sell them myself!?!"

Soooo, I have thrown my savings into buying stock. Beautiful stock.

I aim to stock the clothing that is hard to find on the high street, yet so many people seem to yearn after. Alternative styles; goth, punk, hippy. In particular I am hoping to stock more larger sizes, as plus sized clothing is even harder to find.

At the moment I have some absolutely awesome items in stock. For example, we have Sari Skirts; skirts that have been made from sari fabric. They are in a variety of colours, as you can see from the picture of our stock cupboard. They are double layered, the fabric behind being a totally different colour to the fabric in front, giving an amazing iridescent affect when the skirt moves.

We also have some fantastic medieval styled tunics. They're perfect for people who like the pagan, or goth look, can be worn as a top or a dress, and for either casual or smart occasions.

I have both a website and a Facebook page. So please, come and 'like' us on Facebook, and have a look around the website :)

I need to clarify a few things from the beginning of her statement. NI = National Insurance. She was unable to claim Employment & Support Allowance Income Based because it is means tested; her savings were just above the threshold allowed. As such her only option was to claim Employment & Support Allowance Contributions Based, but because the DWP had stopped paying her National Insurance Credits without informing her, she could not claim this either. She can now pay NI herself for six months, and try to claim again. Meanwhile, hopefully The Funky Orchard will provide enough to live on. So please! Please support her; spread the word, and see if there are any items that you would like to buy for yourself or for someone else with Christmas coming.

How to wreck someone's life

I think most of my readers will agree that M.E. is real. You may not all agree over whether it is psychological or physiological. However, NICE guidelines, and the WHO agree that it is a neurological condition. The NHS is supposed to follow the International Consensus Criteria in diagnosis and treatment of M.E.. This is why the following story breaks my heart. I've spent a little time talking with this gentleman over the last few days, but there is no way I'd be able to do him justice. As such the following is his story told his way.

I've had a wide range of symptoms that got diagnosed as ME back in the mid 80s. Symptoms were more acute then, and - bar a short stay in a psych ward when the doctors could not find a cause - I managed for years, with pacing, though I was never well enough for a job other than volunteer work. About 3 years ago symptoms started to get crippling, with severe unexplained chest and abdominal pains after even moderate exertion, so I went back to the NHS for help, but after gastro exams and blood tests came up with nothing, I was given no option but to see psychiatrists, who would not listen to my reasoning or read references that might point the way to more specific tests, but just chose to brand me as a hypochondriac.

Once given this label, even my friends stopped believing in me, and got fed up with regular trips to A&E where I was scolded for my pain rather than having it properly researched as I begged to be done. In the end, when chest pain got so bad I could only roll about in agony, I was admitted into the psych system 'for observation', with the promise that if they could not help they would pass me on to an ME specialist.

They broke this promise and decided to section me in a ridiculous effort to cure 'hypochondria' with antipsychotics. As by this time, I had split up with my girlfriend, and the council had declared my own house unfit, I had nowhere to go, so did not oppose the section. That was nearly 2y ago. My family have been gradually getting my house into what the council deems fit condition, but the NHS has only stood by waiting to discharge me rather than make any effort over my health, so when I am finally at home, I will be completely out of the system and have nowhere to turn for medical help, after having my life totally wrecked by the psychiatrists, on top of my still worsening ME.

My sister is a journalist and did put some pressure on the PCT and GP practice and local MPs, but this only succeeded in getting me moved from the acute psych lock in facility to this open 'recovery' unit.  Nobody is able to fight the NHS and make them seriously look for what is making people ill, and doctors are actually offended when you ask that they should do so.

My life has been wrecked by the system and circumstances several times over, and each time I've dared to think things were beginning to look up again, I've had all my hopes and dreams dashed.

Please understand that he has told this story time and time again. He has become a dab hand at keeping it concise. As such the story as he tells it does not portray nearly half the sadness, emotion, and loss, the desperation and sense of betrayal that has been going on for decades.

He has been dumped in a psych ward, and basically forgotten. Sure, he has food, water, and a roof over his head. The basic rights promised to animals; so the RSPCA would have no problem with this. Well, I do. I have a problem with someone being treated so badly that they go in to the NHS in a bad condition, and 20+ years later they are in a worse condition. 

M.E. is not a progressive condition. It is not an illness that you expect to get worse. It can get worse, but it is not taken for granted that it will. When under full time hospital care you would kind of expect for patients to improve. Yet he has not improved, he's worse. He's been treated as if they are simply waiting for him to ... what ... die? Miraculously stop being a 'hypochrondriac'? Why is he in this mess of a system when their attempts at treating him have failed? Is it totally impossible for them to consider that they were wrong, that he may not be a hypochondriac and actually has an illness that needs proper treatment? Don't be mistaken, naively believing that being in a psychiatric hospital a patient is regularly seen by doctor's, nurses, and therapists. The truth is that one only sees such medical personal at rare case conferences.

In the 80s, when he first became ill, the understanding of M.E. was very different. When the guidelines changed, why was his treatment not changed? In over twenty years, why has he never had full body MRIs, why has he not been tested for systemic inflammation as per Fibromyalgia? Why has he been abandoned? It's hardly surprising that he's depressed.

I know he's not the only one. I consider myself lucky that I was left to rot in my bed when my condition was so severe. One of my best friends, last year, was admitted to hospital for five months for treatment of M.E.. Her ward too, was a psych ward. She too received no treatment. I'm glad she was released. While in hospital she lost her accomodation, her cat, her carer. So she was released into an unfamiliar world, with no help. I was too far away, and at the time, too ill. She came out of the hospital malnourished. I can't help wondering if this other friend of mine is also malnourished? How does the medical profession expect people's bodies to recover when malnourished?

It fills me with sadness. It is so frustrating that I cannot help him. All I can think to do is raise awareness of this man's plight.

Frustrations of M.E.

When I asked people to share their frustrations of M.E. one of my friends said to me that her whole life is a frustration, that I can share some pieces from her blog to illustrate how difficult it can be.

Her blog can be found here.

Still not found my mojo, am teetering on tearful at times. This mind-numbing continual bombardment of pain and exhaustion has left me feeling decidedly flat. Devoid of any other feeling.  Not depressed, not elated, not anything.

I want to say stuff, I want to post on facebook, or comment on stuff, but on the whole I know what I want to say but then can't be bothered to finish, or can't quite decide how to say it, so I'm just like "what the heck I can't be arsed" and deleting it.

And now I am going to finish as I can't be bothered to write anymore. My body and brain are, whatever, I don't even know what I was going to say so I can't (oh god that's it I'm lost for words).................

~ o ~ <<< 0 >>> ~ o ~

Well another week has passed. A week of occasional social activities, followed by wallops of payback and pain. A week of sleepless nights followed by two nights of successful slumber (which strangely has left me feeling more sleepy during the day).

This is the normal routine now. Just trying to have a life, to know that you are going to have to store up reserves for a simple trip out for a couple of hours and know that you'll still be left owing after. To know that if you manage one type of pain, you can bet that another type of pain will be ready to come bite you on the arse. To be sure that the more tired you are, the more likely it is that you will not be able to sleep a wink, like kicking someone when they are already on the floor. This is life with ME, it's a constant robbing of Peter to pay Paul.....

So here is the point where I was going to write about the positive things in my life. They are definitely still there, just right at this minute I have not got the energy to put them into words. I am sooooo sleepy, and feeling nauseous and my back is hurting again. So I am going to post this right now, and perhaps when I've had some more sleep, I will feel like being positive again.....

~ o ~ <<< 0 >>> ~ o ~

Oh how the weeks are flying by in a blur. Literally. I can barely remember what I was doing yesterday, and trying to recall last week is like trying to look at an out-of-focus picture - you can just about see a vague outline of something or other, but you're not sure what it is, but it has a familiar colour to it that invokes some memory or other that you just can't put your finger on.

I have been trying to keep a diary. This is for various purposes, one being to try to remind me what I've been up to, how I've been feeling, how many good or bad days I have.  What, however it has been mainly illustrating to me, is how many things I forget. It is the most common word in my diary. Here's just a selection for you:-

Jan 15th (day one): Forgot to write diary.... (!!!!!)
Jan 16th: Forgot to write diary.
Jan 17th: Got GP to fill in the form for hospital which I forgot about the last time I saw her. Forgot to ask for a sample pot though. / 8pm started to prepare casserole for tomorrow, but wasn't able to finish it as I had forgotten that I'd just taken a sleeping tablet.
Jan 18th:  Carried urine sample around the house so I wouldn't forget to take it to pre-op appointment. Remembered to take it with me. Left it in the car.
Jan 19th: Forgot to write diary.
Jan 20th:  Forgot to take my morning tablets, remembered in the afternoon.
Jan 21st: Forgot to take morning tablets, remembered after lunch.
Jan 22nd: Forgot to take morning tablets, remembered them about lunchtime, then forgot to take them again. Managed to have them at teatime.
Jan 23rd: Forgot to ring grandma, remembered at 10pm. Then realised I had forgot to ring DWP and the housing association as well.
Jan 25th: forgot to write diary
Jan 27th: forgot to write diary
Jan 28th: forgot to write diary
Jan 29th: tried to recall Friday and Saturday as hadn't remembered to write diary, but memory vague. Can't remember......

Well you get the gist of it. I could go on. It does go on. Much the same. In fact this very week (now I have started looking) I realise that since last Sunday, I only managed to remember to write my diary once, in the middle of the night on Thursday. I couldn't even remember enough to fill in any of the intervening days, apart from Monday morning, which I can remember clearly as I was supposed to be going in for surgery which was cancelled at the last minute.

So as you can tell, I have a memory problem. I am only 43. My life as it now has become consists of one big blur of stuff that I have trouble even recalling half the time.  And I can't even remember to write my diary to remind myself of the things I can't remember.

I will say goodbye for now, I will try to write again soon, but I might well forget to do that as well.

Give us a break!

I let out a slow tired sigh as I sat down to type this blog piece. There's another one! I ask myself why it is that there are journalists so ready to spread hate about M.E.. I don't understand it. One of the comments made me sit back and wonder though; M.E. is today's AIDS. Can that be true? I remember the hide-under-the-table attitude that went with AIDS. Is that how people feel about M.E.? I haven't noticed it being that bad.

This article is written by another delightful journalist, by the name of Damian Idiot Thompson. In it he makes a few claims, namely that the militant wing of people with M.E. are attacking Max Pemberton, that M.E. and eating disorders are related, and that a colleague of his diagnosed with M.E. obviously doesn't have M.E. because he is actually ill ... nice! Rather oddly though, most of the article just seems to be telling the world that social media enables like minded people to work together. I thought we knew that. Maybe he's a bit behind everyone else.

So, my take on his article, apart from thinking he's a first class moron who just wrote it to make a quick buck without actually doing any research, is that he hasn't even bothered to read Max Pemberton's article, which supposedly inspired his. He seems to be saying that he's defending Max because of this huge number of people who are attacking him, mentioning how Max's home security has been threatened. In fact, Max's article itself mentions his home security in reference to his previous article. Max also tells us that it was only about 200 people worldwide that were attacking him.

Personally, I've never ever read of any overlap between eating disorders and people who suffer from M.E.. BUT, everything overlaps everything doesn't it. There's a huge overlap in the number of people who keep pet rats, and also have M.E., but I'm not going to suggest that rats cause M.E.. There's an overlap in people who drive cars and people who wear bobbly hats, but that doesn't mean the two are related either.

He starts off by saying:

"The article you’re about to read will almost certainly be referred to the Press Complaints Commission. I’ll explain why later."

I'll be surprised if it does to be honest, as it's such a naff article. It kind of sounds like he wants it to be though. Just to show how badly the article is written, he doesn't actually go on to "explain why later" in the article either.

So why am I writing about it? Because I am overwhelmed by the response it has received. For once I have actually been able to log in to the site and post comments. My first comment was in reply to his claiming that journalists won't approach the subject anymore; I pointed out that Sonia Poulton does, and linked to her fantastic article. My comment was removed. Presumably linking to other journalists is a no no.

There are a few ignorant trolls who are deliberately stirring up trouble, but I'd like to share some of the comments with you, with permission of course (I am still awaiting permission for some of them).

'It's safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade'

Carly Maryhew said:

I'd like to clarify a couple things.  There's a common question regarding ME patients commenting on articles like this one: "If you're so fatigued, why are you posting so much?" Most of us are not particularly fatigued, though we have ME, of which fatigue might be a symptom.

There are two debilitating symptoms which might be interpreted as fatigue.  The first is Post-Exertional Malaise, which basically means getting very sick for days or weeks after a normal or even very minor amount of exertion.  Typing takes very little muscular effort, and any but the most severe cases can handle some of this.

The other symptom is Orthostatic Intolerance.  This means we can't handle being upright very well, as our blood pressure will eventually do very funny things that can cause fainting or general inability to think and function.  This is easy to diagnose and usually treatable, but that doesn't happen in the UK (or most other places) due to general ignorance.  Orthostatic Intolerance  can keep people with only mild or moderate PEM from working at jobs where little exertion is required, such as doing data entry in an office.

Orthostatic Intolerance keeps me housebound, and on two horrible occasions, bedbound.  It does not prevent me from typing, and in fact I'm more clear headed when bedbound because I can't even try to sit up for hours at a time.  Lying down does make typing uncomfortable, however, so I don't do much of it when bedbound.  And as long as I don't go crazy and try to play computer games or write a novel, and take breaks, I can type a decent amount before my muscles have had enough.

My hope is to get my Orthostatic Intolerance treated so I can be somewhat functional again.  Then maybe I can think clearly most of the day, not need to lay down every couple hours, and even slowly shuffle around the grocery store again.

Another point: this disease ceases to be invisible if we push ourselves hard enough.  But we work VERY hard to avoid getting to that point, because it invariably results in Post-Exertional Malaise or even long-term worsening of our ME symptoms.  When I've been upright and/or walking too much, some of my leg muscles cease to function - I can still walk, but it becomes extremely jerky and awkward.  If I keep pushing, more muscles wear out temporarily, and my leg or legs cease to function as needed.  It's an extremely disturbing sensation to be trying to lift your leg and for it not respond at all.

Thank you Sonia

A friend of mine, the lovely Sarah-Louise Jordan, has written this beautiful poem in thanks, to Sonia Poulton, a journalist at the Daily Mail who has written another fantastic article on M.E.

Nobody heard our voices in the shadows
Or saw the flare we sent into the skies,
They didn't see the ground beneath us vanish,
They turned the truth we told them into lies

We lost the strength to dance, except in spirit,
We lost the strength to sing, except in thought,
We had to learn to make hope out of nothing,
In spite of all the monsters that we fought

But on the lonely road we met each other,
Our love and friendship kept our dreams alight,
We found a way to laugh and in the darkness
The stars of our compassion filled the night

And then you joined us in our epic battle,
You heard our voices and you saw that flare,
Because of you the sun will bring the morning,
Our day will come at last, because you care

I can relate easily to the poem. When you have M.E., you lose everything, but because you look just like everybody else, very few people actually realise it. Your energy is sapped as if by some invisible force. You may become sensitive to sound; you can't listen to music or sing. No one knows what causes M.E.. No one has a treatment for us. It feels as if we're locked away in a cupboard none of the medical community want to mention. So when someone comes along and opens the door to that cupboard it feels amazing.

Sonia actually says in her article:

"The over-riding message I have received has been one of gratitude. I can tell you that this is something of an unusual experience for a journalist writing for national newspapers. [..] Many of these voices – including some of the greatest scientific, legal and academic minds in the ME world – have echoed a collective sigh to see their illness validated in the media."

She gets it. She totally gets it. She describes the exhaustion and pain, the horrible treatments we're expected to accept despite them making us three times worse. She understands how we feel we've been forced to live in denial. She knows that we can die from M.E., and that people with M.E. are aware of this despite our doctors seeming not to be. And she recognises the frustrations of the misinformation that seems to be everywhere.

I don't know what triggered Sonia's interest in M.E., but she really does understand. Please have a read:

ME is no more 'in the mind' than Multiple Sclerosis. When is the world going to get that?