A good bit from the radio

There was a lot of fuss about M.E. on Friday. There was an awful interview on Radio4, which was then repeated on Radio 5 Live. It seems that 5 Live did another bit later on though.

ME Sufferer Speaks

And because I know that link probably won't be live forever, I have transposed the interview below. Interjections from the interview are marked with '>'.

I was 12 and a half when I was first diagnosed. Prior to that I was fit and healthy and happy and I believe psychologically stable; cycled to school, school rugby, academically doing reasonably well, and since then I suffer from severe headaches, severe muscle pain, severe exhaustion, brought on by physical activity or mental activity which is reading, using computers and so on. It is incredibly debilitating. I have to use an electric scooter and stair lift. I have a carer from social services to assist me with personal care. So life is incredibly difficult and I am in no doubt that it's a physical illness. I know some people have done things like CBT and so on, and have improved, but I think as Dr Shepherd pointed out earlier on, ME has become an umbrella term for a lot of illness and I think a lot of people with ME would argue that if you do CBT and get better completely perhaps you didn't have ME to start with.

> CBT being cognitive behaviour therapy.

That's it yes.

> What was the trigger for you?

It was a virus called, don't laugh, Coxsackie B4

> Wow

They recon that half the town of Aberystwyth had the virus. They tested a lot of children in my comprehensive school, a lot of them had it. And for reasons they're still not sure of, a large per centage of people in Aberystwyth came down with ME at that time.

> Do you think there is an imbalance of funding for research into this disease, condition, however you might describe it?

Er disease, yeah we'll go with that. Yeah, it would appear so. I think one of the things that is confusing, for example, at the moment in the US and the UK, people with ME are not allowed to give blood. Now, obviously, someone with a psychiatric condition would not pose any threat to the population  by giving blood. So if people with ME are not allowed to give blood, then obviously the medical authorities are very concerned that ME does have a  physical and therefore contagious element to it, so surely the bulk of the research should be going into finding out what the physical causes of ME are.

> Finally, we had a text earlier from someone saying 'ME, it's just an excuse for lazy people to take a couple of years off work'

Yeah, you do get people like that. I'm afraid ME is a serious and debilitating illness. I would love to live life to the full, I would love to be working, climbing mountains and doing all sorts. I get very very frustrated, and life is extremely painful and extremely difficult and I wish it was very different. But for a lot of people with ME that is the reality of life. Acceptance from the medical profession, which we get from a vast number of doctors, is valued, and the thing that we want is for people to help and funding to be given to try and find some way of assisting us practically.

Mostly yesterday 28-07-11

I got up early today (10:30am is early for me). I tried to stay in bed resting, but I couldn't even persuade myself to read. My mind is actually lucid for a change too. I wish I could think of a use to which to put it. The only thing that comes to mind really is that I did not blog yesterday. I should have, as although it was a particularly tedious day, it was the original purpose of this blog to record such tedium.

So, yesterday ...

I was awoken at just gone 10am by the cat. She was telling me in no uncertain terms that it was breakfast time. So I rolled over, pulled the duvet over my head and went back to sleep for another hour. I did come downstairs to feed her eventually. I discovered in doing so that every single bit of me ached. I guess I should not have been surprised by this really, but I was.

I think, when I went for a walk in the fields opposite G's house the previous day, I somehow hurt my back. I made no particular sudden movements that I'm aware of, fell down no rabbit holes. I did have a nap in the middle of a field. But nothing of note; yet I very obviously now have sciatica.

Not only was I struggling with sciatica yesterday, but I also had the pain I refer to as 'FM style pain' throughout my legs and arms, for the first time since Tim (my osteopath and acupuncturist) poked me with lots of needles. Soooo, sciatica and muscle pain; two reasons to see Tim again I guess. It's a shame I cannot afford to do so at the moment, and probably won't be able to until the house sells.

Anyway, to top off the deal, yesterday my period decided to start. This will of course explain my observation about emotion from the previous day. It's been a while since I had period pain as extreme as it was yesterday. The only means I've actually had of coping with period pain for years is to knock myself out with pain killers (they send me to sleep rather than actually dull the pain), and sleep through the nightmare. Last month my doctor gave me some actual prescription pain killers. I tried these yesterday. They did not send me to sleep (yay), but they also did not even touch the pain (not so yay). I'll have to go back to my doctor and grovel.

I am uncertain of why, but frequently I notice that when I have my period I seem to become more lucid. I took advantage of this yesterday by starting to build my family tree through G's ancestry.co.uk account. I've had it written down for years; it's a huge thrill to see it coming together on the computer.

And so, I guess that is what I will be doing today. I seem to be particularly sound sensitive today, so the TV will definitely remain off.

Second letter from my MP

The reply to the letter I sent to my MP; you can find here:

Dear Olana,

Thank you very much for your letter, and enclosures, regarding your situation as a CFS/ME sufferer which I read with interest and concern.

You have made a number of very interesting points with regard to how the assessments for ESA are carried out and I have now referred this to the Minister concerned at the Department of Work & Pensions.

As I mentioned in my previous letter, the Minister will not be able to comment on your own, personal situation, but I have requested his comments on the concerns you have raised.

I shall, of course, contact you as soon as I receive a reply to my letter.

My thanks, again, for taking the time to write.

Your sincerely,

Your MP.

Apt Description of CFS

I've pinched this from another blog, because it's so accurate. Click the title of this post to view that blog. The only quibbles I have with it are that it forgets the constant agony in our limbs,  I wouldn't have deleted the nausea part, and I certainly wouldn't say 12 years is the maximum .. sadly.

A LOT of people with Chronic Fatigue Syndrome struggle to describe their condition or its symptoms. I don't have that problem.

It's a relatively simple equation, it just needs a bit of imagination. Think back to the worst hangover you've ever had.

The one when you get home at 4.30am, barely able to stand and then your alarm goes off seemingly before your head even hits the pillow to tell you the hardest working day of your life is about to begin.

Now take that hangover, delete the nausea, and turn the headache down from a Spinal Tap 10 to the irritating hum of a Level 5.

As you stagger from your bed to get dressed, imagine that the top layer of your ensemble for the day is a 20kg lead blanket that you will wear like a shawl over the back of your neck, top of your shoulders and top of your back.

Now imagine yourself with no sleep, slouching under the weight of the blanket walking 10km to work, to ensure that you are completely out of energy, with a list of 40 names and 40 phone numbers that you are to memorise by the time you get there.

Fast-forward to 3pm, when you are praying to a merciful God for just five minutes of sleep as the weight of the lead blanket feels like it is collapsing your lungs, you recall about six digits from the 40 phone numbers and none of the names and your boss isn't happy about it.

You ache all over and the last three grams of your energy are being used to stop yourself from grabbing something sharp and plunging it into the chest of the 55th person who has got on your nerves that day.

Take that mental image of yourself at 3.05pm on the worst day of your life, and imagine how you feel, physically and mentally. Welcome to the wonderful world of Chronic Fatigue Syndrome.

The good news is, with CFS, you don't have to wait until 3.05pm to feel this way.

When you have it, this is how you wake up every day, whether you have had eight, nine, ten or two hours' sleep.

Everything you do in your daily life is now a major event, and takes massive amounts of effort and energy that you just don't have to give.

Summoning the energy to swing your legs over the edge of the bed and stand up? It may as well be the a Marathon.

Even holding a conversation, without your mind wandering off and your eyes glazing over to make it seem like you don't care - even when you do - takes immense concentration on every word. By the end of the chat, you are physically drained.

Even finding out you have Chronic Fatigue is exhausting.

Doctors have no way of actually testing for it, so they test for everything else first, and rule them out one by one.

You're depressed, take these drugs. You have iron deficiency, take these pills. You have a brain tumour, have this scan. You need more/less red meat, water, caffeine, exercise, stress, alcohol, sleep.

When they finally decide it's Chronic Fatigue, they tell you there is no cure and you'll just have to wait it out, anywhere between six months and 12 years.

Big Bad Al

Waiting Waiting Waiting

What the frick is wrong with me??? 27-07-11

I woke up this morning with chronic tummy pain. This did not overly surprise me since I'd had the same experience yesterday. On Sunday G and I went down the road for a carvery lunch. I had forgotten that stuffing contained gluten, and tucked in happily. The good thing is that I enjoyed every mouthful of my lunch. The bad thing ... if I'm gluten intolerant then I just undid all the healing that would have been happening over the last few weeks. *If*. I figure, anyone who hasn't eaten gluten for weeks would probably react the same way after eating it again. We'll see at the end of the trial period.

So, I woke up, went to the bathroom, and was then so completely exhausted that I went straight back to sleep again. I woke up again a few hours later, but still felt drained, so read for a bit. Slept for a bit. Read for a bit. Slept again. Finally at just gone 3pm I felt awake and actually lucid, so I got out of bed. There was a letter waiting for me at the doctors that I was supposed to collect on Friday, so I went and collected it. I posted the corset to Nomi while I was out too.

Yesterday, Gand I had been talking about Counting Crows. I mentioned a song that he'd never heard of before. I decided to take the single with me in the car and listen to it. While I was out I had the bright idea to take the CD up to G. I thought it'd be nice to spend the evening with him. I looked at the time and realised that I'd get there a bit early. He finishes work at 5:30; I'd get there about 5.

I drove up there. Reached his place at 4:50, so decided I'd take the extra time to see what was further up the road (it heads out of the village; a direction I'd not been yet). So I drove for half an hour til the road ran out. Turned around. Headed back. It was gone 5:30 now, but he wasn't home yet. So I parked the car and went for a walk in the fields opposite his house. He texted me at just gone 6pm. I figured this meant he was leaving work. I sat on the hill overlooking his house to see when he got home. But he didn't. At 6:50 I finally phoned and asked him why he wasn't at home. He'd gone to the pub after work. He said he'd be home in half an hour. Since he'd not picked up on the fact that I was at his house I kept shtum and decided to head home instead .. forgetting that I'd already put the CD through his door.

I got home before him. He didn't notice the CD when he got home. So when he phoned me I was kind of skirting around trying to work out whether he realised I'd been there or not. I basically had to direct him to the CD. He was extremely touched that I'd driven up there, and then scolded me for not telling him I was there when I'd spoken to him at the pub. I could have gone and surprised him at the pub .. had I know where the pub was .. but I'm not exactly sparkly Nim today, and wouldn't want to meet his boss when I'm in this state.

I am very confused as to quite what is going on with me at the moment. 

First of all when I was at G's ten days ago I had all the signs of being on my period, including the weird mucous stuff (sorry for TMI), but no actual period. Whilst driving to his place this afternoon I had period pain all the way there. But not on the way back, and not this evening. 

Secondly, this whole gluten thing is tiring me out. I'm confused. I was so sure. Every time I ate something with gluten in it I was crashing immediately afterwards. Then I took a week where I eliminated gluten from my diet; I immediately started to have an appetite, all the weird cravings went away, and I stopped crashing after I ate. But since I've been on the elimination trial for longer I've started to become fatigued after eating again. G read that this can be normal, but I'm still doubting myself. And then I ate gluten at the weekend, and have very obviously reacted. And whilst I can say that anyone would probably react to it, I have to also acknowledge that I've immediately started having weird cravings and lost my appetite again. It's so confusing.

And finally, when I was walking in the fields opposite G's I went through so many different emotions. I was feeling fine. I felt like I was not ill. I felt strong, as if I had energy, I felt vibrant. And then I started thinking about how much I actually want to be with G; how I want my life to begin now, as if I've been waiting forever to be with him, and I started crying. And then I started feeling sad again, as I had been yesterday; questioning why every time I try to do something nice for myself it always goes wrong. It was as if my brain had decided to go through a role-call of emotions to check that they were all there.

New Definition for M.E.

I've nicked this from a friend of mine on Facebook (thank you Rupert). I'm not lucid enough to actually be able to read and process it myself at the moment, but am hoping it'll be useful to others. It's the new definition for M.E. as taken from the ME Associations website.

"MYALGIC ENCEPHALOMYELITIS: INTERNATIONAL CONSENSUS CRITERIA Adult and Pediatric ● Clinical and Research

Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.

A patient will meet the criteria for post-exertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D).

A. Post-Exertional Neuroimmune Exhaustion (PENE pen׳-e) Compulsory This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are: 1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. 2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms

3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days. 4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer. 5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

Operational Notes: For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level), moderate (mostly housebound), severe (mostly bedridden), or very severe (totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient’s recovery time from reading for 1⁄2 hour, it will take much longer to recover from grocery shopping for 1⁄2 hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately. Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.

B. Neurological Impairments At least One Symptom from three of the following four symptom categories 1. Neurocognitive Impairments a. Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia b. Short-term memory loss: e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory

2. Pain

a. Headaches: e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches

b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non-inflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain

3. Sleep Disturbance a. Disturbed sleep patterns: e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares b. Unrefreshed sleep: e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness

4. Neurosensory, Perceptual and Motor Disturbances a. Neurosensory and perceptual: e.g. inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception b. Motor: e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia

Notes: Neurocognitive impairments, reported or observed, become more pronounced with fatigue.

Overload phenomena may be evident when two tasks are performed simultaneously. Abnormal reaction to light – fluctuation or reduced accommodation responses of the pupils with retention of reaction. Sleep disturbances are typically expressed by prolonged sleep, sometimes extreme, in the acute phase and often evolve into marked sleep reversal in the chronic stage. Motor disturbances may not be evident in mild or moderate cases but abnormal tandem gait and positive Romberg test may be observed in severe cases.

C. Immune, Gastro-intestinal & Genitourinary Impairments At least One Symptom from three of the following five symptom categories

1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion.

e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation

2. Susceptibility to viral infections with prolonged recovery periods

3. Gastro-intestinal tract: e.g. nausea, abdominal pain, bloating, irritable bowel syndrome

4. Genitourinary:e.g.urinary urgency or frequency, nocturia

5. Sensitivities to food, medications, odours or chemicals

Notes: Sore throat, tender lymph nodes, and flu-like symptoms obviously are not specific to ME but their activation in reaction to exertion is abnormal. The throat may feel sore, dry and scratchy. Faucial injection and crimson crescents may be seen in the tonsillar fossae, which are an indication of immuneactivation.

D. Energy Production/Transportation Impairments: At least One Symptom

1. Cardiovascular: e.g. inability to tolerate an upright position – orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness

2. Respiratory: e.g. air hunger, laboured breathing, fatigue of chest wall muscles 3. Loss of thermostatic stability: e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities

4. Intolerance of extremes of temperature

Notes: Orthostatic intolerance may be delayed by several minutes. Patients who have orthostatic intolerance may exhibit mottling of extremities, extreme pallor or Raynaud’s Phenomenon. In the chronic phase, moons of finger nails may recede.

Paediatric Considerations

Symptoms may progress more slowly in children than in teenagers or adults. In addition to post- exertional neuroimmune exhaustion, the most prominent symptoms tend to be neurological: headaches, cognitive impairments, and sleep disturbances. 1. Headaches: Severe or chronic headaches are often debilitating. Migraine may be accompanied by a rapid drop in temperature, shaking, vomiting, diarrhoea and severe weakness. 2. Neurocognitive Impairments: Difficulty focusing eyes and reading are common. Children may become dyslexic, which may only be evident when fatigued. Slow processing of information makes it difficult to follow auditory instructions or take notes. All cognitive impairments worsen with physical or mental exertion. Young people will not be able to maintain a full school program. 3. Pain may seem erratic and migrate quickly. Joint hyper-mobility is common.

Notes: Fluctuation and severity hierarchy of numerous prominent symptoms tend to vary more rapidly and dramatically than in adults.

Classification ____ Myalgic Encephalomyelitis ____ Atypical Myalgic Encephalomyelitis: meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.

Exclusions: As in all diagnoses, exclusion of alternate explanatory diagnoses is achieved by the patient’s history, physical examination, and laboratory/biomarker testing as indicated. It is possible to have more than one disease but it is important that each one is identified and treated. Primary psychiatric disorders, somatoform disorder and substance abuse are excluded.

Paediatric: ‘primary’ school phobia.

Co-morbid Entities: Fibromyalgia, Myofascial Pain Syndrome, Temporomandibular Joint Syndrome, Irritable Bowel Syndrome, Interstitial Cystitis, Raynaud’s Phenomenon, Prolapsed Mitral Valve, Migraines, Allergies, Multiple Chemical Sensitivities, Hashimoto’s Thyroiditis, Sicca Syndrome, Reactive Depression. Migraine and irritable bowel syndrome may precede ME but then become associated with it. Fibromyalgia overlaps.

http://www.meassociation.org.uk/?p=7173"

Taskforce

This is a facebook group that I do not intend to join as I know I will get wound up by it:

Protest Against Mobile Regional Taskforce

It does scare me though. The taskforce is starting less than half an hour from me. I'm not quite sure how it works. I read somewhere that it'll be targeting high risk areas first; I don't know if I'm in one.

I have no idea what they could find that would be evidence that we are capable of work. At the moment I have my printer next to the settee, with paper and envelopes in a bag, next to a folder of stuff. They may consider that to be evidence that I am doing work like activity. The fact is that the printer is down here because it hurts too much to go upstairs to use it. The reason I have been printing stuff is for evidence for the appeal process. Writing to my MP. Writing to ex bosses. Writing to my doctor. The envelopes and paper are obviously for the letters. The folder is my filing system; which contains all my correspondence with the DWP. Well .. most of it. Some of it is under my bed for some reason.

Chances are that if they came to the door I would be upstairs asleep anyway, so wouldn't hear them. They may take that as evidence that I am not home, and therefore able to work, which I do find very worrying. Do they have the right to break the door in? Do they have warrants? If they don't have warrants I can just tell them to go away anyway, I believe.

If anyone turns up here, I'll be going straight next door to Brian. No way would I face that alone.