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.

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.

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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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!

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.

Fibromyalgia is a joke?

Disagree with the title of this blog post? I do. If you're on Facebook, please go to this page and report it:

STOP the Whining!!! Fibromyalgia is A JOKE

How to report a page on Facebook:

• Next to 'message' click the little arrow.
• Select 'report page'
• Select 'hate speech'
• Select 'targets people with a disability or disease'
• Click 'continue'
• Check 'Report to Facebook'
• Click 'continue'
• Click 'ok'

Just a sample of what the delightful individual who made the page has to offer:

Is Fibromyalgia a disease with a physical pathogen, or merely the result of depression and stress? The pain may be 'real' but the cause may be literally all in your head.

One sure way to stir up controversy is to say that Fibromyalgia or Chronic Fatigue Syndrome or some other illness that has no physical symptoms (other than reported pain) is a made-up illness. People will get incensed and say, "Our Pain is Real!"

And that may be true. But pain does not occur in your joints, your muscles, or even in your nerve endings. No, it occurs in your mind. Even if someone saws your leg off with a chainsaw, the pain doesn't occur in the leg, but in your mind, where you actually feel pain. Similarly, you do not "see" with your eyes, but rather receive light signals. It is the mind that assembles these into images that we see.

But mental illnesses have a stigma in our society. And depression is one of those illnesses where we tend to blame the victim. "Cheer up!" we say, as if it were a cure. And people are thus reluctant to seek help for depression, convinced it is too trivial a matter to bother a doctor about.

And as a result, it is not uncommon for a lot of maladies to appear in the mind - psychosomatic illnesses. And these do occur with regularity, particularly among depressed people or hysterical teens. And some folks often make hay from these things - doctors or political activists with an ax to grind.

And the sufferers from these illnesses do enjoy the attention they get, and are comforted in having an official diagnosis of their ailment. After all, just "getting too old" or "drinking too much" or "being depressed" are not as concrete a diagnosis as a mysterious disease without any physical symptoms - other than pain. The mysterious disease has a name and a cache. And if anyone calls you out on it - that it might be fake - even the Doctor who first gave it a name - you can go on the offensive and call them all sorts of nasty things. Just wait for it...3.....2.....1.... FLAME!

He is right. It's made me very angry. I do not suffer with depression, so I disagree very strongly that FM or M.E. / CFS are physical manifestations of mental illness. I have suffered from depression and anxiety for years in the past, and yes, some of those years were while I was ill. I had a breakdown in 2001. I am not ashamed in the slightest to admit any of that. It says something about the author of the page that he assumes that every single person with Fibro would be ashamed to admit they had any psychological conditions. A few of my Fibro friends do, and they're not ashamed to admit it either.

I am insensed that someone has made this page. I do not understand what they stand to gain from it. I am assuming that there must be someone in their life who has Fibro, and they are jealous of the attention that person, or those people, get. He has talked about enjoying the attention from the illness after all. Personally, I do not get any attention from the illness, so I don't really understand what he is talking about there.

This is hate speech, plain and simple, and it should be squashed.

Frustrations; Fibromyalgia has changed my life

This friend of mine has M.E. and Fibro. She struggles every day, and it's heart breaking to watch.

I can't walk without walking sticks, I can't cook a meal for myself as its too painful to stand to prepare it and the pots and pans are too heavy for me. My memory is so bad I forget who I am on a regular basis and have caused accidents on many occasions due to forgetting I had left a tap running, or food cooking. I spend a lot of time sleeping, badly, and still wake up feeling like I haven't slept in months. I have pain in every single joint in my body and am constantly exhausted.

I have Fibromyalgia and it's changed my life completely! Yet still I keep on fighting! The support of my friends and family is sometimes the only thing that keeps me fighting and I love you all for it! XXX

Frustrations: The mother of an M.E. sufferer

When I invited people to share their frustrations about M.E. with me, one of my friends came forward to tell me that her son has M.E.. I hadn't previously known this. This is what she had to say...

ME can be inherited........! that awful realisation that you’ve passed something awful on to your child!

I’ve never actually been diagnosed with ME – I’ve suffered with most of the symptoms though since I was 19. My own doctor doesn’t like labels – and after being diagnosed (by another doctor) with Fibromyalgia ten years ago (at 34), the need to have it confirmed lessened. Friends with ME tell me I have it, and I have to say I think I probably do too, but a lot of the meds they use are the same, and the extreme exhaustion of both is very similar – so it matters less to have the ME label.

I know there’s nothing I could do to stop it, but knowing that my son (then 16 and just finishing his exams) had contracted the horrible illness that blighted my adult life and that he got it because I’d had it was very hard to deal with. Interestingly (!), his father has Fibromyalgia too..... so my poor son had no chance to avoid this pain – a lot of people suffer with both ME and Fibromyalgia.

My son is now 21, he’s been through college, a year of Uni and even parenthood whilst suffering with this horrid illness. College and Uni were hard – but they knew about his illness and gave him extra time to complete things – I had to help a lot too, especially with the written work; so most of his coursework was a joint venture – we joke that I too have a Diploma in Modern Music (or at least, the written part – I can’t play a single musical instrument!). Parenthood – well, that’s exhausting at the best of times – adding ME into the mix just adds a whole new dimension – we all help when we can.

The practical side of the illness (or at least the support of it) is straight forward – you know his energy has its limits and don’t expect too much. You do what you can to help, you make allowances and adjust.

Emotionally though it’s harder – maybe because I can truly empathise – but trying to keep him going when I’m struggling to keep my own ‘emotional’ head above water is so draining. There are certainly days when I will do everything to keep him going at a cost to my own health – not because he asks it, but because I’m his mum and that’s my job (ok, silly maybe, but it’s how I feel).

He doesn’t like people knowing he has ME – in fact it’s only his really close friends that do know. He feels that somehow he’s failed by having the illness – that they will think less of him (they don’t, I can assure you). But as his mum, that’s really hard to deal with – I’m pleased, of course, that he doesn’t use it as an excuse – but sometimes I wish he wouldn’t be so hard on himself – and would allow people to care and make allowances.

He’s my son – and I would do anything to take this terrible illness away – but we have to live with it, him and I – we don’t have a choice, do we?

FM v M.E., what's the difference?

Last year I was diagnosed with Fibromyalgia. My previous GP had sent me to a rheumatologist, desperately seeking a specialist we could use to write me a statement for the DWP, as they would not accept anything written by him. The rheumatologist I saw was confused as to why I was referred to her, despite my explaining that there were no M.E. specialists in our area. My GP had hoped she would either be able to help or refer me further afield. (He eventually did this himself, as we know from previous blog posts). I only had one appointment with this rheumatologist. She diagnosed me with both Fibromylagia (FM) and hypermobility, and referred me for physiotherapy. She didn't explain to me what either condition means. My question ever since seeing her has been "What is the difference between FM and M.E.". No one, until today, has been able to give me an answer. I have several friends (all in the UK) who have the diagnosis of both, but none of them know the difference, and all identify most with the diagnosis they received first.

Today, a friend in the US, pointed me towards this page.

"A lot of people - even doctors - want to lump fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) together, believing they're different manifestations of the same underlying problem. [...]

Similarities Between FM & CFS/ME

• Pain
• Fatigue
• Sleep disorders
• Irritable bowel syndrome symptoms
• Chronic headaches
• Association with Temporomandibular Joint Syndrome (TMJ)
• Cognitive or memory impairment
• Dizziness
• Impaired coordination

[...] When you look deeper, you discover that FM is linked to pain states such as hyperalgesia (pain amplification) and allodynia (pain from a typically non-painful source). CFS/ME, meanwhile, is associated with muscle aches like what you get with the flu. Also, not everyone with CFS/ME has pain.

[...] research shows that people with CFS/ME have unique fatigue states. The same has not been found about FM, and not everyone with FM has fatigue.

The types of unrefreshing sleep are vastly different, as well. People with CFS/ME may sleep most of the time, yet never feel rested. So far, researchers have been unable to identify any actual sleep disorders in CFS/ME, but they have found abnormal sleep patterns. FM, on the other hand, is generally characterized by one or more recognized sleep disorders as well as abnormal sleep rhythms. In many, the sleep disorders pre-date FM. Generally, those with FM get very little sleep.

When it comes to exercise, which causes symptom flares or "crashes" in both conditions, studies link the reaction to different physiological processes, including low growth hormone in FM and abnormal heart rhythms and lactic acid processing in CFS/ME.

The presence of central sensitization puts these conditions in the same overall category, but it's not unique to these illnesses.

Differences Between FM & CFS/ME

One key difference, when it comes to a diagnosis, is which symptom is worst, pain or fatigue. The diagnosis could also be influenced by whether your doctor is more familiar with the American College of Rheumatology's criteria for FM or the CDC's guidelines for CFS/ME.

However, experts have found some significant differences.

• Greater immune dysfunction in CFS/ME
• Abnormal nerve response in FM
• Stress-system (HPA axis) abnormalities predominantly from the adrenal glands in CFS/ME and the hypothalamus in FM
• FM patients have abnormal levels of a cellular chemical called substance P (which transmits pain signals), this level appears to be normal in CFS/ME patients.
• CFS/ME patients often have high levels of a cellular antiviral enzyme called RNase L, while the level is normal in FM patients.
• CFS/ME diagnostic criteria include low-grade fever and sore throat, FM criteria do not.
• The onset of FM frequently is traced to a physical or emotional trauma. The pain of FM usually gets better with heat and massage, while CFS/ME pain doesn't.
• Elevated pro-inflammatory cytokines in CFS/ME, and sometimes elevated anti-inflammatory cytokines in FM.
• FM has generally not been connected with viral and bacterial infections (with a few exceptions, such as mycoplasma and parvovirus B19)
• CFS/ME has occurred in epidemics, but none have been reported for FM
• FM is not thought to ever be progressive or life-threatening (as CFS/ME can be in rare cases)
• FM does not usually cause severe immune dysfunction, neurological symptoms and exercise intolerance
• CFS/ME usually does not cause allodynia (exaggerated response to pain: non-painful stimuli experienced as painful)
• Diagnosis of FM requires tender points (painful areas in the muscle that occur in certain places)
• CFS/ME tends to begin after flu-like symptoms and may be linked to a virus
• CFS/ME patients often have high levels of a cellular antiviral enzyme called RNase L, while the level is normal in FM patients
• CFS/ME diagnostic criteria include low-grade fever and sore throat, while FM criteria do not
• People with FM have tender points and abnormal levels of a cellular chemical called substance P (which transmits pain signals), and this level appears to be normal in those with CFS/ME
• Meanwhile, the onset of FM frequently is traced to a physical or emotional trauma. The pain of FM gets better with heat and massage, while the pain of CFS/ME does not."

I am interested to read at the beginning of the page that many doctors lump FM and M.E. together, believing they stem from the same cause. Every time I talked to anyone about the difference between FM and M.E. I was hearing that the two conditions have the same symptoms, and onset even seems to be similar; as such I had also come to the conclusion that they were one and the same.

I think, but cannot tell for certain, that this website may be American. The reason I say this is that my experience has been that when I suggest to doctors and other medical professionals that FM and M.E. are the same condition they react very negatively. Since being diagnosed with FM, medical professionals have taken me more seriously than they previously did; they tend to dismiss my diagnosis of M.E., but pay attention to FM. My understanding is that in the US, they are given about equal attention, though unfortunately both being dismissed by many medical professionals. I believe medical opinion of M.E. in the UK is far more negative than that of FM, because of the affect Dr Wessely has had, whereas the profession in the US has not had that influence. Wessely has not given the same attention to FM that he has to M.E., which may be why FM is taken more seriously. And may be why doctors look at me derisively when I ask if the two conditions are one and the same.

As the article suggests, I honestly do get very confused when trying to describe the pain I experience. A friend of mine recently asked me to describe FM pain to her because she is concerned she is developing it on top of her M.E.. I struggle with hypermobility pain, sciatica, other back pain, M.E. pain, and supposedly FM pain, and I honestly cannot tell you which is which a lot of the time.

I've experienced quite extreme pain for as long as I can remember. As a teenager I struggled with pain in my joints and throughout my legs, sometimes my arms too. The pain in my legs was sometimes so severe that I could not walk. I learnt many years later that the pain in my legs and arms was because of problems with my back. I learnt last year that the pain in my joints is due to being hypermobile. Both were dismissed by medical professionals as being growing pains. If you read further into the FM/CFS/ME Resources website you read of many patients with FM being told by medical professionals that they don't have any clinical signs of pain. This has lead me to wonder whether I actually had FM or M.E. many years before they hit me properly.

I had concluded months ago that the rheumatologist was incorrect to diagnose me with FM. The reason for this was that she seemed to do so upon hearing that I had pain in muscles. She seemed unaware of what tender points were and did not ask me about them. Plus she seemed to simply dismiss M.E. as irrelevant. I did not think that half an hours consultation was adequate for diagnosing something as severe, with such implications, as FM. Having read this document I now believe I am correct. I do not think I have FM. I cannot indicate tender points for the pain I have. I would describe it as being in my muscles, feeling like the bone is bruised. Sometimes it hits the exact same spots in my muscles; I can hit that spot, as if to give myself a dead leg / arm, and the pain will go temporarily. Other times the pain will simply radiate around the muscles. I had previously thought that TMJ (Temporomandibular Joint Syndrome) was only associated with FM. I have it, as such it was in my mind, my only connection to FM, but now having read that people with M.E. suffer it also, I shall dismiss that thought. Finally, the rheumatologist did not test for abnormal nerve response, did not test my cellular substance P levels, did not test for elevated anti-inflammatory cytokines, etc etc.

My conclusion is that I will be taking this document to my new GP and asking them to remove the diagnosis of FM from my records. While it has had be taken more seriously, had me receive medication that is helping me which I would not otherwise have received, and probably would have the DWP taking me more seriously, if it turns out that FM and M.E. are completely different conditions at some point in the future, I would rather that my medical records were accurate. I would also like to show the 'system' that I am not a hypochondriac collecting diagnoses.

The benefits system is blameless ...

Another of the large popular newspapers is becoming aware of the problems with the benefits system and the changes therein. This is an item on their website, a video, so presumably not an article that was published in the newspaper. It's very powerful.

Julie, suffering from Fibromyalgia and three herniated disks, has also developed a sleep disorder and depression due to the pain. She won her tribunal on the 27th of February, then received a letter on March 20th informing her that she would lose her benefit on April 30th due to the changes; she is living with a partner who is earning £800 a month, so they lose £400 a month because she's been claiming for a year already. They put her through the tribunal for nothing, wasting her time, causing her a great deal of stress, and wasting tax payers money. She took an overdose at New Year because of the stress. She states that it's humiliating going through the motions.

"This is just .. the red tape, knowing I've got to go to court again. The lack of help and understanding I've had from certain areas of Job Centre Plus, especially the appeals section. Given duff information, being spoken down to, just not knowing if I'm ever going to get money again. If that happens, what do I do then? I'm struggling really hard to go on, and fighting all the time, but that's all you can do really."

Richard is a carer for his wife, who suffers from asthma and arthritis. She has been found fit for work despite being unable to use her hands. As such they have been placed on joint Job Seekers Allowance, presumably replacing sickness benefits and carers allowance. Despite raising their grandchild they receive only £105 a week on which to live. They were docked a months pay when Richard missed two appointments with the Job Centre due to medical emergencies with his wife. In the clip he shows that his electricity metre has only £3.99 left on it, which he says will last until Saturday. He won't be paid for another week and a half. Opening a cupboard he shows that he has a few tins of beans, explaining that it has to feed three people until they're paid, but states that they're lucky as some people don't even have that.

"It's a fine art to survive on the bare minimum. Once these sanctions come into place and they take that away from you, you've got no chance. I'm at boiling point. I'm at going postal point, you know. Honestly, it's up to that point now, where I want to scream and shout at the top of my voice and nobody's listening. I'm a positive person. I always try to look on the bright side. I've always made the best of what I've got, you know, and to be in the situation where I'm losing control of my marbles, so to speak, is not something I'm used to, and it's not something I enjoy doing."

David Cameron stated "If you're vulnerable and in need we will look after you. If you hit hard times we'll give you unprecedented support."

He lied.

"A DWP customer recently attempted suicide. This was said to be the result of receiving a letter telling him his Employment and Support Allowance was going to stop."

"A DWP spokes person said "It remains rare to find incidents of self harm where the benefits system is said to be a factor, but we are not complacent when it comes to ensuring that our staff can provide the right support and help to those affected. We ensure our staff are highly trained and ready to help people, however vulnerable they may be and whatever pressures they face. We have worked hard and continue to do so, to improve the way the Work Capability Assessment works for those with mental health issues." "

I disagree. It is not hard to find incidents of self harm where the benefits system is a factor. It is simply a fact that the Department for Work and Pensions is not aware of it. My doctor was very aware of the stress this system was causing me last year. He saw the self harm injuries inflicted upon myself as a result of panic attacks I suffered when trying to complete forms for Employment and Support Allowance and Disability Living Allowance. I personally know dozens of people under going this stressful process. I know that many of them simply cannot cope with it. I am certain that many of them, too, have self harmed. Self harm is not something that is easy to discuss with ones friends, or personal professionals, let alone disjointed professionals such as our MPs or an Atos assessor. When being assessed for ESA or DLA, why would we think to mention that we wish to commit suicide because of the process we are undergoing at that very moment?

It aggravates me that the DWP representative states that they "have worked hard and continue to do so, to improve the way the Work Capability Assessment works for those with mental health issues." They completely fail to appreciate that it is their Work Capability Assessment that is causing many people mental health issues. I had no problem with depression at the time I started to apply for Employment and Support Allowance. I have been struggling with it ever since.

And I know I am not alone.

I think it is time that we told them. I think the government is delusional. They have their heads in the sand. I am well aware that they suffer from a bad case of 'only hearing what they want to', but if we do not all speak up, then they simply cannot hear us. We cannot complain about their ignorance if we do not fight it. So let us all be brave. If you have self harmed, or you have considered or attempted suicide as a result of the stress caused by the Work Capability Assessment process, or anything related, please please write to your MP and tell them.

Make ME Crafts

Click Me!!!

"All our products are made by M.E. sufferers and their friends/family with profits being donated to 'Invest in ME' to help fund a UK M.E. centre for biomedical research and treatment.

So, whether you're looking for a special present or fancy a little treat for yourself, check out our fantastic gift ideas and join with us to raise much needed funds for a great cause."

I think this an absolutely awesome idea. I am so happy to see a way for people with M.E., not only to express themselves, but to make a little money doing so, AND to contribute to an M.E. charity whilst doing so. One of my biggest frustrations is that I simply cannot donate to all the M.E. causes I see on the groups.

I used to make jewellery. I stopped doing so a year or so ago because I became disheartened at the fact that you simply cannot make money selling it in the UK. If I'm able to sell it through this website, making back a little of the money it cost me to make, then I'm all for it. It just means I have to motivate myself to actually start making things again.

Epstein-Barr Syndome

"EB (Epstein Barr) is a nasty little piece of work" one of my friends declared on Facebook last year. At the time all I knew about it was that I had tested positive for it in a blood test in 2002, and been told by the doctor that it indicated that I had probably had glandular fever at some point. As such I thought Epstein Barr was Glandular Fever. I wasn't entirely wrong.

Epstein Barr is sneaky. It can present with extremely mild symptoms, like a cold, or even no symptoms at all. As the article linked in the title explains, when symptoms are present they usually clear up within a couple of months. My understanding of viruses was that they usually passed a lot more quickly than this. For me, if symptoms last that long, I would start to think that the symptoms were normal, part of my body's functionality. This is probably what did happen with me, and the reason that I did not have it treated.

In severe cases people will represent with full blown glandular fever ("mono" to any Americans reading). Swollen glands, fever, extreme fatigue, being a few of the symptoms they will experience.

Epstein Barr doesn't just go away. Like other members of the herpes family it may lie dormant causing further problems later on in ones life. It has been linked to a number of diseases and condtions, including of course, M.E.. Other diseases believed to be linked to Epstein Barr include Fibromyalgia, Multiple Sclerosis, Rheumatoid Arthritis, Systemic Lupus Erythematosus, and some cancers.

Epstein Barr, being a virus, tends to appear in clusters. I remember at college several of my peers having Glandular Fever within a few months of each other. I never had Glandular Fever, but my best friend did. I spent a lot of time by her bedside because she was extremely ill with it. I possibly did have EB at that time, but did not display any of the symptoms.

I actually believe that we had a cluster of it while I was at school though, before college. Many of my peers from school are now ill. I know of at least four people I was at school with who now have M.E.. My sister has MS. I have not done the research, but I suspect there are others from our years who have autoimmune conditions.

It is an accepted fact that M.E. seems to appear in clusters. I wonder whether any epidemiologists have explored whether Epstein Barr related conditions also appear in the same clusters. Did my school suffer from Epstein-Barr Syndrome?

M.E International Awareness Day

Can you guess why I posted that? No? Ok ... well May 12th is ME / CFS International Awareness Day. It is also Fibromyalgia Awareness week in New York from May 9th to 15th, so there will be a lot of promotion and purple ribbons being worn worldwide.

Please, do post the above image on your own blog, or on your Facebook, or link to it from Twitter. It is a convenient time to raise awareness (being Awareness Day and all). If you can find or make a purple ribbon please wear one; when people ask you what it is for you can explain to them about the devastation that M.E. causes to sufferers, and their loved ones and families.

The M.E. And CFS Report

The M.E. And CFS Report looks good.

The idea behind setting up The M.E And CFS Report is to provide a place where people who have a diagnosis of either M.E or CFS can find all the latest news about their illness.

 Both Twitter and Facebook havebecome major ways of passing on information and raising awareness abut our illness, the problem is information on Twitter and Facebook is fast moving and it is easy to miss something. The M.E And CFS Report helps by collecting all of the information related to both ME and CFS that is beng currently shared online, and placing it in one place for you to read. I hope you find this a useful resource.

 Paul Winter

Low Pogesterone

Have you got Fibro? One of my friend's doctor has just mentioned to her that she may actually have low progesterone, one of the female hormones. One of the symptoms is Fibro. Others include infertility, miscarriages, autoimmune disorders, etc. Have a look at the list of symptoms below. I have copied them from here. If you have alarm bells ringing, ask your doctor to be tested.

• Accelerated aging
• Allergy symptoms such as; asthma, hives, rashes, sinus congestion
• Arthritis
• Anxiety, nervousness and irrational fear (commonly accepted, but unnecessary PMS symptoms)
• Autoimmune disorders such as; Lupus erythematosis, thyroiditis and possibly Sjogren's disease
• Back-ache – particularly pre-menstrual back ache (commonly accepted, but unnecessary PMS symptoms)
• Bloating (commonly accepted, but unnecessary PMS symptoms)
• Blood clots during menstruation (commonly accepted, but unnecessary PMS symptoms)
• Breast cancer
• Breast tenderness (commonly accepted, but unnecessary PMS symptoms)
• Brittle nails
• Brown spots on the back of the hands
• Cervical dysplasia
• Cold hands and feet as a symptom of thyroid dysfunction
• Copper excess
• Constipation
• Cracked heels
• Cramps (commonly accepted, but unnecessary PMS symptoms)
• Cravings, binges and eating disorders (commonly accepted, but unnecessary PMS symptoms)
• Cystitis
• Dark rings under the eyes
• Decreased sex drive
• Depression, anxiety or agitation (commonly accepted, but unnecessary PMS symptoms)
• Dry eyes
• Early onset of menstruation
• Endometrial (uterine) cancer
• Fat gain, especially around the abdomen, hips, and thighs (commonly accepted, but unnecessary
• PMS symptoms)
• Fatigue
• Fibrocystic breasts
• Fibromyalgia
• Foggy thinking (commonly accepted, but unnecessary PMS symptoms)
• Gallbladder disease
• Hair loss
• Headaches
• Hot flushes and night sweats
• Hypoglycemia
• Increased blood clotting (increasing risk of strokes)
• Infertility
• Irregular menstrual periods
• Irritability (commonly accepted, but unnecessary PMS symptoms)
• Insomnia
• Low blood sugar
• Magnesium deficiency
• Memory loss
• Migraines
• Miscarriages
• Mood swings (commonly accepted, but unnecessary PMS symptoms)
• Osteoporosis
• Panic attacks
• PMS
• Polycystic ovaries
• Post-natal depression
• Pre-menopausal bone loss
• Prostate cancer
• Sluggish metabolism
• Thyroid dysfunction mimicking hypothyroidism
• Uterine cancer
• Uterine fibroids
• Vaginal dryness
• Varicose veins
• Weight gain
• Water retention

Rod Liddle's hateful article, and my reply.

My New Year's resolution for 2012 was to become disabled.

Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades - fibromyalgia or M.E.

There's lots of money to be made from being disabled - your money - taxpayers' money, as it happens.

And it is far easier to be disabled these days than was ever the case.

Also, I am nothing if not a creature of fashion, a cool and with-it hipster, daddy-o who is always up to date with the latest trends.

And being disabled is incredibly fashionable. The number of people who claim to be disabled has double in the past ten years.

And who can blame them? Not only do you get money from the Government and don't have to go to work - but if you play your cards right you might get one of those badges which lets you park wherever you want. Right in front of the cashpoint for example. And you can use those enormous toilets with levers and handgrips and emergency buzzers they have in all public places, without feeling too guilty about it.

The latest figures regarding incapacity allowance came out this week. It is now estimated that 80 per cent of people who are claiming sickness benefit are actually fit to work. What's more, almost a million people have been on Invalidity Benefit for more than a decade.

When you suggest that this is a public scandal, the disabled charities get very cross and accuse you of victimising the infirm.

But I'm not. I'm victimising the people who are pretending to be infirm in order to claim money from the state.

Or at least I'm trying to. I don't suppose it will have much effect. Just water off their supposedly bad backs.

Then the Left-wingers will say - hang on a minute, you fat old fascist, more money is lost to the country as a result of tax avoidance by the very rich than is wasted through sickness benefits.

Well, maybe it is. And the Government should deal with that with a bit more vigour than they do right now.

But it still doesn't make fraudulently claiming sickness benefit OK, does it?

That's like saying we shouldn't get worked up about crime such as rape because murder is far worse.

It's a silly argument.

More than anything, though, the people fraudulently claiming sickness benefit are doing a disservice to those who really deserve it. The people who are truly disabled or ill. It has become easier to claim these benefits, partly as a consequence of the disablement charities who, out of their own self-interest, insist that an ever-greater proportion of the population is disabled.

I think we should all pretend to be disabled for a month or so, claim benefits and hope this persuades the authorities to sort out the mess.

Dear Rod Liddle,

Do, please, pretend to be disabled for a month or so. In particular, try and pretend you have M.E. or Fibromylagia. First of all you have to convince a doctor that you have such a condition. Your month is already gone. In fact, you've lost at least six months, in many people's cases it takes years before they actually know what it is that is wrong with them, crippling them with pain, leaving them in bed in a dark room, staring into nothingness every day because doing anything else is unbearable.

Assuming for the sake of argument that you miraculously get your diagnosis within that month, you then have the joy of applying for benefits. The first week you can claim statutory sick pay from work. Your doctor will then start signing you off work with 'fit notes'. Again, your month is gone, but again, for the sake of argument ... The fit notes come to the attention of the DWP, as they are paying your sick pay. They don't particularly like paying sick pay, so they send you out the ESA50. It's a form in which you explain exactly what is wrong with you, in minute humiliating detail. I think describing my bowel movements was probably my least favourite.

The ESA50 takes the DWP at least two months to process, if you're lucky. So AGAIN, you have lost your month. Extremely few people are accepted as being truly ill from the ESA50 alone, even if they have accompanying medical notes and letters from their GP and specialists. They are sent for a medical assessment with Atos Healthcare. Atos, unfortunately, are infamous for fabricating evidence, and having their assessments turned over on appeal. The medical assessments are extremely stressful. In most cases people become more ill because of the stress caused by this whole process, making them far less likely to be able to work any time soon; a catch 22 situation if you will. The usual result of this whole process is that each individual is placed in the 'Work Group ESA'. Very few make it through to the Support Group. Some are put back on Job Seekers Allowance. And for most, once they reach the Work Group, it is recognised by their support worker that they are indeed not fit for work, and told that there are no jobs available for anyone anyway, let alone the sick or disabled. For those put in the Work Group and Support Group, the whole process starts over again in three months time.

Are you actually aware of how much money people on sickness benefit are able to claim? Please follow me with the figures here. I was 22 when I became ill. I was earning £15,000pa, starting out in a marketing career. I would be earning £30,000+ by now. If I was claiming ESA at the moment I would be receiving approximately £90 a week on ESA. That amounts to £4680pa. Very very few people are also able to claim Disability Living Allowance. The middle rate DLA, for sake of argument, is approximately £50 per week. That is another £2600pa. The total per year is just over £7000. Please explain to me why people like myself, on a flourishing career path would choose to pretend to be ill, with a pay cut in my case of £7000 at the very least?

I would like to point out that I have both M.E. and FM, and do not receive any benefits. So therefore I would ask of you, why would I pretend to have these invented illnesses? Simply for the blue badge? I can promise you that I do not pretend to be in pain nearly constantly. I do not pretend that I frequently cannot stand up. I do not pretend to be constantly nauseous, or have headaches. I do not lie in a quiet, dark room for most of the day because I want to make people believe I am ill.

In regards to benefit fraud, are you aware that ESA and DLA fraud are actually the lowest forms of benefit fraud? The Invalidity Benefit and Incapacity Allowance to which you refer, do not even exist. Has it actually occurred to you that if disability statistics are rising, that it may actually be because the population is rising too? Given the inaccuracy of the rest of your article though, I am hesitant to believe that fact simply from your say so.

So yes, I would absolutely love to watch you be disabled for a month. I would like for you to be in pain, be unable to sit up for more than twenty minutes, let alone stand up, unable to cope with bright light or fluctuating sound, to constantly feel too sick to eat, to react to foods today that you did not react to yesterday .. you get the picture. I would also like to see you put away every single one of your mod cons, freeze your bank account, and actually try to live on the £67 a week you would receive as statutory sick pay for that month, paying for your rent / mortgage, all your bills, and your food on it.

Kind regards,

Not a fan.



[I am aware that my facts are not entirely correct regarding statutory sick pay. At the time of writing brain fog was attacking me and I couldn't make head nor tail of the governments website. The first weeks statutory sick pay is actually based on ones own salary. Given that this fella works for one of the top newspapers I am guessing that his sick pay would be higher than most of us can imagine. As such I am sticking with the £67 per week figure, as basic ESA, JSA, and assessment allowance are all this amount. So yes, I would like to see him survive on that.]

I'm gonna miss my doctor!

So, I went to see my doctor yesterday. It's the first time he's seen me so ill, as usually I cancel appointments rather than force myself out of the house. It's the first time he's actually seen me use the stick too. Usually I'm too embarrassed, but given how ill I am right now I figured I should be completely utterly honest with him. I didn't actually need to say anything; as soon as I walked into his office he knew. I'm not my usual bouncy, positive self at the moment. He knew the right words to express my wanting to end everything too. It alarmed me a little when he said that we have to hit rock bottom before we can go back up though; last time he said that I wasn't as bad as I am now ... so technically, things can get worse.

We talked about my visit to the rheumatologist. He isn't very happy with her recommendations. We're going to try the Amitriptyline, but only for a few days to start with. If it affects me like it did last time, we'll be stopping. He's prescribed the Tramadol as recommended too, but there was another drug she suggested which he has decided we should give a miss. He's not overly keen on the Tramadol either. I've not looked into it, but suspect this may be something to do with my wanting to fall asleep and never wake up again.

He was unhappy that she did not wish to discuss M.E. at all, but understood why she instructed me to not mention it to the physiotherapists when I'm finally referred. He has decided that despite the waiting lists, and the distance, he is going to refer me to the Nuneaton CFS Specialist unit. When I get my appointment I'll just have to beg someone to take me. He's going to see if I can go in privately to shorten my waiting time. And he's going to stay late on Friday to see me, because he wants to be sure I'm ok with the new medications. I'm allowed to stay with the practice for two further weeks after I've moved house. I will miss him.

I hate this. I hate that I am so ill that I have to question myself before being honest with anyone about how bad things are. It is second nature to play things up. When someone asks you how you are they expect you to say 'fine thank you'. If you respond with anything else you tend to receive a strange reaction. Well, I'm not ok. I desperately need help, and have no idea how to get it. So I had to be honest with him.

I made him a bird out of my snotty tissues. I think he was grateful.

Second Life

I've been asked to write a post on how Second Life makes a difference to my life as someone who is mostly housebound and unable to socialise or interact in the normal way. You may not be familiar with Second Life yourself. It is a MUVE - a Multi User Virtual Environment. That is different from being a game. Imagine that you are chatting on MSN or Yahoo etc, but it becomes real. You can be face to face with the person you are chatting to, or a representation of that person at least. You have been drawn into a different world created by peoples imaginations, and you can move among that world, meeting other people whom you would otherwise not have met, from all over the world, and all walks of life. It is an extreme form of Instant Messaging I guess, with many more ways to interact injected in it.

You can join Second Life here: http://secondlife.com/

Before I share my experience I would just like to warn anyone who does choose to sign up, to not use a username that they use for anything else online. 

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

I am in pain. I am always in pain. Chronic pain. For the most part I cannot leave my house, not only due to pain, but because I often cannot stand up for more than ten minutes without starting to black out. I have M.E. - Mylagic Encephalomyelitis. It is a neurological condition which affects the immune and endocrine systems ... officially. In actuality it seems to affect every single facet of my body and life.

I am hypermobile, I have hypothyroidism, I have Fibromylagia, and arthritis in my back. I have eczema, asthma, and ... other things ... but it is M.E. that causes the problems. I cannot, for example, follow the simple process of preparing a meal, let alone remain standing to actually cook it. I am frequently over-sensitive to sound, or light, meaning I cannot listen to music, or watch the television, and need to turn my monitors brightness down as far as it will go. I cannot even begin to describe the fatigue and how it messes with my sleep pattern. Prior to becoming ill I had a career marketing biotech products. I used to swim 50 lengths after work three times a week. I used to go down to London, clubbing with friends, and I did charity work at the weekends. I absolutely loathe the life that I am now forced to live.

At this time last year I was bedbound. I was too weak to stand, and my body would not accept any nourishment. I had discovered Second Life a few months previously, and it was these friends who stood by me through that nightmare.

The ability to log in to Second Life when I choose, gives me a sense of control. On Second Life I have no need for food, so I don't need to worry that I am unable to prepare a meal, or that my body may reject it. On Second Life I can walk for as long as I want to, I can dance, I can even fly! And there's no pain in any of these ... unless my fingers are hurting too much to type, but if that is the case I can then use voice with people.

When you first join Second Life you notice that everyone is tall, beautiful or handsome. As such it teaches you to look beyond the aesthetics of pixels into the person behind the avatar. And it teaches you that you are beautiful, that people can appreciate you for who you are inside. 

On Second Life I go shopping. I cannot do this in real life. Some of my favourite stores are:-

- Curious Kitties

- Phoenix Rising

- Twighlight Star

- Monsoon

I can change my outfit at the touch of a button, which is by far preferable to the unbalanced saga I experience in real life each day. I tend to change my hair too. Several times a day. Most of my outfits have been free though because my favourite past time on Second Life is hunting. There are grid-wide treasure-hunts, each participating store offering a free item.

I also spend time playing games such as Greedy or En Garde, or exploring sims of haunted houses, forests, or moon scapes. And I spend quite a lot of time just chilling with my friends at a venue or their homes.

Even on Second Life though, I have had to adapt to cope to a certain extent. Many sim owners are keen on fancy animated graphics or objects. These cause me to become extremely giddy and nauseous. I used to wear a blindfold to avoid these items (it blanks out my screen), but have recently discovered that I can derender them, meaning that they just disappear and I can enjoy the rest of the environment. I very rarely have music or environmental sounds turned on because of the affect continuous noise has on me. As I already mentioned, when I am in too much pain to type I can use voice. I can also have one of my friends leash me so that I do not have to worry about moving my avatar, and using RLV they can teleport me between sims too.

Second Life allows me to have a life. It gives me the ability to interact with people on a personal level, every day, to make friends, or enemies, and to feel almost normal. It may well be pretend, but it's a whole lot better than the complete emptiness my life would otherwise be.

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At the touch of a button
I have a life
A home
Friends
Lovers
Beautiful vistas
and parties galore.

At the touch of a button
My legs work
My arms work
No Pain
No weakness
Derender irritating objects
and mute annoying people.

At the touch of a button
Rude people
Politics
Arguments
and stress
... sometimes, I need time out.

I return to my bed
to stare at the ceiling, at dust, cobwebs, and spiders
to pain, weakness, loneliness, and boredom
day in
day out
It does not take long for me
to touch that button once again.