Monday 30 July 2012

Shopping with Olana

One of the things about having an illness like M.E., anything that restricts your ability to go out, is that it makes shopping difficult.

For obvious every day things I personally use Tesco Online. Most supermarkets offer similar services these days. The charge for delivery with Tesco varies throughout the week. I usually go for a Tuesday or Wednesday afternoon as it seems to be the cheapest. I believe, but could be wrong, that Asda offer free delivery; the Asda delivery drivers are not allowed to enter your house though, which is a problem for me as I cannot carry the heavy boxes through to the kitchen. If you are up to going shopping in Iceland, you can save yourself all the packing etc by having your shopping delivered to your home if you spend over a certain amount.

For non food items I tend to frequent Ebay, Amazon, Preloved, Gumtree and Argos. I tend to look through all five, quickly comparing products and prices, before deciding upon a purchase, if I decide to purchase at all. Ebay & Amazon have aps you can add to your phone, so you can shop from your bed if you need to, or simply follow things you've already bid on / bought. I had always thought Amazon only sold books, but apparently they sell nearly everything these days.

What has actually lead me to writing this blog post though is clothes shopping. I find shopping in general quite stressful. Super market shopping is the worst, so I'm very thankful that I can do that online now. Shopping for clothes can be equally difficult though. Firstly because walking from shop to shop to shop for hours is painful and exhausting, but also because the high street shops all seem to carry similar clothing, which is just getting further and further away from my tastes every year. Over the last year I've done a lot of window shopping online, and am now starting to buy a few pieces of clothes that I feel are far more me than anything I've ever owned before.

For the last ten years, I've had no income (I still have no income mind you). I have relied upon my (ex) husband for money, and therefore, for clothes. His approach to clothing is that if it costs more than £5 it isn't worth it. Occasionally I'd be allowed to buy a dress at around the £20 mark for a Christmas party or similar occasion. The problem with sticking within that price bracket is that you are not only forced to shop in high street stores, but in their sale rails. So, you're getting the stuff that no one else wants to wear. For the last ten years I've been wearing mostly synthetic clothing, that is either uncomfortable, or doesn't fit properly, and I very rarely actually liked it much.

I've been posting pictures of a few pieces of clothing that I would like, to Facebook, and I've discovered that I'm not the only person who doesn't enjoy shopping in the high street stores. Many of my friends love the styles I'm showing them, but have no idea where to find them. Most of them work full time so don't have the ability to look around online like I have been. So, if you like the styles I post today, have a look at all the links I put at the end of the post.

I described myself the other day as a 'guppy'; a little bit goth, a little bit punk, but mostly hippy. I didn't take into account boho or steam punk though. Basically, I'm anything but main stream.

It all started with Witchfest last year. You can, but don't have to dress up for Witchfest. I decided I wanted to. I'd never 'dressed up' before. A close friend of mine helped me, because I just didn't know where to start. We started with this underbust corset (without the skirt part):

Added the white version of this skirt:

And this short black peasant blouse under the corset:




I enjoyed dressing up, and decided to redo my miserable excuse for a wardrobe. There were a few things I needed to get used to though:
- in the real world good clothing costs at least six times what I am used to paying for it.
- (theoretically) if you pay the price for clothing it will last longer, so it's worth saving for items you really want.
- when buying clothes from Asia you need to add one or two sizes to their sizing; always check sizing charts for measurements (returning clothes to Asia is a nightmare).
- when you're buying natural fibres it often means that they are going to be hand wash only, and cannot be tumble dried. (I've risked many clothes on a 30 degree wash and they've come out fine though). Most sites do not tell you in advance of such limitations.
- dealing with small online vendors means dealing with real people running their own businesses. You get a much nicer service than if you're going to high street stores. I've had to swap and change many items, even with a bigger website like Corsets UK, and not had problems for doing so.

I'm just going to post pictures of some of the items I have bought over the last few months. I will link the pictures directly to the pages to buy them from. Please explore these websites more thoroughly, and follow the links at the end of my post, as you will find so many treasures, you simply will not believe it.

These trousers are amazingly comfortable. The elastic went in mine, but it was very easy to fix. They state that they are hand wash, but have been through the machine here several times without any problems.

These haven't actually arrived yet, so I can't give a review of them, but I'm excited. I've always wanted faux leather leggins, but the ex always frowned at clothes like these.

Turquoise is my all time favourite colour, so this bag caught my eye as soon as I saw it, and I love it. It's a very large bag, designed to sit perfectly across from shoulder to hip. My only niggle is that I can't find anything in it because it has no partitions; so I might add some!

I have this top in brown. It's very comfortable, and again it goes through the washing machine despite pretending it doesn't want to. My only grumble is that I get the cord in my food, in the washing up bowl, and it gets washed every time I wash my hands. That is a bit obvious from the design though.

Blue Banana sold this on Amazon. They have high street stores, and a website too though. They're one of the few alternative stores who have become quite popular and well known (and pricey). I have quite a few of their products in my wardobe!

This top is really cute. I keep meaning to buy the other one that's similar. Very comfortable. Machine washable. Yay all round!

The picture doesn't really do it justice, but this top is fantastic. It has a lace up neck and lace up sleeves. The length of the neck makes it really warm despite the fabric being quite thin.

Surprisingly thick fabric, I am finding I tend to wear this top on colder days. I keep having to pull the back down so that the web around the neck stays in place.

This is a case of making sure you look at the sizing chart before purchasing. The first time I bought the skirt it was far too tight, but now I have the right size I love it.

This bolero cost me £5! It looks and feels like it cost £50. Everything on this site is £5, so I highly recommend it. Sometimes you need to be patient, waiting for items to be in in your size, as everything sells very quickly.

My top isn't quite the same as this one; none of them are the same. I actually bought mine from his store in the Oasis Markets in Birmingham. I highly recommend visiting if you can. If you have a blue badge you can park right outside. It's a building of about five floors, with several mini stores on each floor. Hippy Buddy is one of them; I bought several items from him, and am more than happy with all of them. The other stores in the Oasis are all hippy, boho, Victoriana, etc, with a few tattoo parlours, and a beauty salon thrown in too.
Whilst updating my look I had to get some new glasses, so why not change my glasses style too? I went for these, which just so happen to match my hair which is now black with pink streaks down one side. Select Specs do good quality frames at the best prices I've personally found online.

I hope you have enjoyed shopping with me today. Please do have more of a mooch around the stores I've showed you.


Stores I've shared items from:

Corsets UK

Dangerous FX on Amazon

Blue Banana on Amazon

Nomad's Clothing

Bizbusy on Ebay

Altshop-net on Ebay

Lotus on Amazon

Park Walk

Kate's Clothing

Argoth

Chosen Gifts on Ebay

Everything5Pounds

Hippy Buddy

Select Specs



Further stores to explore:

Ashen Soul on Facebook

Sassis US on Ebay

Dark*Dream on Ebay

Osiris Fashoin on Ebay

Black Rose

Gypsy Moon

Sharpe Designs

Pure Burlesque on ebay

Tuniquewear on Ebay

JennyzImpressionz on Etsy

Kinky Angel

Siesta

Tuesday 17 July 2012

Please help fund Alice!

Ok, sure, you don't know her from Adam, but she needs your help. Alice has M.E. and has done for years. She's being brave and trying to do something outside of the NHS to help herself. She is going to Breakspear. Breakspear, these days, seem to be the best option for people with M.E., but they are very very expensive. They are not NHS funded, and even for private consultations they charge above average. They're worth it though. So please help Alice be able to go there by visiting the page linked below (and in the title).

Saturday 14 July 2012

M.E. and me

It's funny. As a Christian, whenever I met new Christians they always asked me what my testimony was. A Christian's testimony is the story of how they were lead to God. Some people's testimonies were amazing. I always felt horrible when asked this, because I didn't really have such a story. I started going to church because my family sucked and I was lonely. I don't think I ever actually told anyone that though.

These days I have testimonies for many things. What lead me to Wicca, how I discovered I was bi, how I became a rat lover, and my M.E. testimony. Today I will share this last one with you.

The truth is that I will never be 100% certain when I actually became ill. I can easily pinpoint the pinnacle of the onset, but if you ask anyone who has known me for a long time they will tell you that I have always been a tired person who slept a lot. I do have hypothyroidism as well as M.E. however, so this may well explain that.

There is also the fact that I have had a back problem since I was very young. I fell out of a tree when I was 11, following which I suffered increasing amounts of pain. Doctors and family put this down to 'growing pains', but eventually when I was 17 an osteopath discovered that I had slipped disks in my back. Suffering something like this for 6 years is fairly likely to have had an impact. My body was fighting chronic pain without treatment all those years. If one is to believe that slow onset for M.E. exists, then I may well have developed the illness due to the back pain, with the fall from the tree being my trigger event.

When I was 18 my best friend had glandular fever. She had it extremely badly. She had allergic reactions to the medication that was supposed to help her. She was off college, laid up in bed for months. I visited her as frequently as I could. She cannot remember these visits. I recall her hallucinating that she was looking in the mirror and seeing an old lady looking back at her (there was no mirror even present). She forced herself to attend college, and even on occasion to come to nightclubs with the rest of us. She developed M.E.. Her mother already had it.

I went to university where I studied Health Science. Every project I could, I focused on M.E. because of her. It was very hard to find information on it back then. There has been a lot of progress since I finished university, and I've learnt more in the last couple of years than I did in my entire course.

I was an extremely active person. I was working full time. I attended church twice every Sunday. I still attended the university Christian Union every Thursday evening. I volunteered every other Saturday morning in Oxfam. I swam 50 lengths three times a week. I did shopping for the elderly of my church (I could not drive in those days, so I walked to and from the supermarket). I attended a committee called the World Mission Group with my church, and took the minutes for the church meetings. I did the weekly clean of the building of flats that I lived in, for my landlord. I frequently went clubbing with my friends, often going down to London to do so, and of course entertained many other social activities too. I was busy, and I loved it.

My immediate superior at work was a bully. It became so bad that I quit my job. At the time it was extremely difficult to find work, so I found myself taking a Christmas job in a shop. I absolutely loved this job, and stayed on after Christmas. The week that I started the job I had a stomach bug; it actually meant that I could not start the day that I was supposed to. Then, due to the way my previous boss had treated me, and the feeling of being a complete failure, I had a breakdown. The boss at my new job, and my housemates, were absolutely wonderful about it. I was put on anti depressants, but did not get on well with them at all. I do not know if they contributed to what happened or not though.

During the week I had been ill with the bug I had become stir crazy in bed. I had decided I wanted to decorate the living room. I could only manage ten to fifteen minutes of activity at a time, but I managed to strip the wall paper. Behind the wall paper was black mould. I have mycotoxicosis from a previous serious exposure, so when the mould spores started drifting off the wall my immune system just crashed.

My colleagues at the shop job never knew the bubbly active person that I described above. They knew I loved working, and was fun to work with, but they also knew that I could not manage to go out for a drink with them after we closed the shop, and that I frequently had a quick nap in the cloakroom between shifts. I became extremely fatigued. I was getting up just to go to work and then going to bed as soon as I got home. I started to feel as if the sky was pressing down on me. I reduced my hours, and then reduced them again, until my boss eventually told me I should leave because I was obviously too ill to work.

I found myself stranded in bed. I could not stand light, or sound, so I had to stop watching TV and using the computer. I couldn't have the lights on. I went through a phase of being unable to cope with anything touching my skin, so I had to lay naked on the bed with the heating turned up to suit me. I felt constantly nauseous, but never threw up. The world felt as if it was tumbling, throwing me around. I had headaches coming and going, and flashing lights before my eyes. I felt as if something was literally sucking energy from my arms. My hair hurt! I wore sunglasses and earplugs if I needed to go outside, but avoided doing so, because walking more than a few steps was leaving me breathless and exhausted.

Despite becoming so extremely ill, I considered myself lucky. I had studied these exact symptoms for years, so I knew what was happening to me. I had a friend with the illness, and she guided me through the process as best as anyone can. My doctor though thought it was simply depression, as many do, so I went completely without treatment. No tests. Nothing.

My housemates fed and watered me, paid the bills, and cared for me. They were utterly wonderful and I will never be able to thank them enough. My other friends, and church fellows though were hopeless. When I was unable to attend activities a few times my friends stopped inviting me. Except one, they never visited me either. I called my minister asking for help on several occasions, but he never came despite many promises.

That is the period I refer to as the onset of M.E. for me.

I had not told my family how ill I was because they have simply never been interested in my well being. They knew I had left work because I was struggling, and that I had no income (Job Centre had told me I could not claim becuase I was ill, but no one had told me sickness benefits existed). I think their main concern was probably making sure I didn't ask them for money. When my step mum told me one day that my sister had M.E. I was devastated. My saying 'so do I' sounded completely lame, and was dismissed immediately. I believe my sister had been ill a matter of weeks when she was diagnosed. She had recovered within three months of becoming ill (at the time, one was not supposed to be diagnosed until they had been ill for at least six months), so my family spent the next eight years (until it was discovered my sister actually has MS) asking me why I had not got better like my sister had, making me feel, as they always have done, that I am totally inadequate.

My real mother and her partner came to visit me two or three times during that period. Unlike my father and step mother (whom I refer to as my family because I grew up with them), they saw that I was very ill, that I was struggling, they did give me hand outs of money, and I believe they actually took me seriously. It was they who had taken me to the osteopath when I was 17; when my back problem was discovered. I think that a decade of seeing me only on my good days however, has lead them to believe that I am a lot less ill now than I actually am.

I met my ex husband online. I moved to the midlands and we married. I spent eight years gradually improving. At the beginning of 2010 I had got to the point where my body was asking me to exercise and my mind was seeking stimulation. I started attending the local recreation centre, and was embarking upon a very gradual exercise plan with the help of a fitness instructor who was familiar with M.E. (funnily enough he was on my course at university with me). I also started seeking work. After being out of work for so long I was, and am, extremely nervous about working, so I enrolled with temping agencies rather than seeking permanent positions. Nothing ever came of it though.

In June 2010 we went on holiday to Egypt. It was the first proper overseas holiday we had been on without his parents. I had been having problems before we left; what seemed to be my asthma playing up. Throughout the holiday it persisted. We assumed that the air conditioning was making it worse and ignored it. After a beautiful week on the Sinai Peninsular we returned home. I got worse. The cough became as severe as it is when I have mycotoxicosis episodes, only there was no mould to blame. I had allergy tests, but nothing showed up. Eventually I had a lung scan which showed severe infection. By this point my health had declined markedly. I was housebound again, sleeping a lot more than was normal, and struggling with post exertional malaise more than ever.

It became worse and worse. It felt like just walking was a huge fight. I could not breathe properly. My body was rejecting all foods; I lost four stone. It became so bad that I only got out of bed to use the bathroom. My husband had to bring me food, but he did not see the point if I couldn't keep it inside of me. I thought I was dying.

In the middle of November he told me he wanted a divorce. He never gave me a proper reason as to why, but I would not be surprised if it was because he could not cope with me being that ill. He had spent eight years watching me getting slowly better, and then I'd relapsed back to where it all started. He had always been very irritated by my being ill to start with. I sometimes wonder if he actually believed I was ill at all. This relapse was evidence, and I don't think he liked it.

This time around I had an absolutely fantastic doctor. He did everything he could to work out what was wrong with me. Until I had been his patient he had believed that M.E. was psychological. I don't think he believes that any longer. We discovered that I could eat rice; as soon as I started to eat only rice my body started to recover. He also found that the cause of my cough was acid reflux; a simple dose of Omeprazole every day cleared it up, so the huge energy drain from the coughing was cleared up almost instantly.

I 'recovered' fairly quickly. With this relapse I learnt what a trickster M.E. is. It allows you to think you are recovering and then shoots you down. And with this relapse, came the onset of M.E. pain. I can no longer push myself at all without the risk of suffering pain throughout the muscles of my limbs. Sometimes the pain will come when I have not even pushed myself at all. It affects my arms and legs mostly, but will sometimes affect my fingers and toes, which is debilitating and agonising. If you have ever bruised a bone, you will know what this pain feels like.

I have suffered with depression for most of my life. For about eight years I was on anti depressants. I came off them in 2009 (by accident). I was amazed and happy at how I no longer needed them. I felt normal. I went through a very stressful divorce process, and a just as stressful house move without feeling depressed; without needing anti depressants. I mention this because I want to be clear that I am not ill with depression, it is definitely M.E.. I often doubted this myself because of the attitudes of various doctors, but I no longer do because I have experienced the difference for myself.

In December of last year I got together with C. He was abusive and put me under huge amounts of pressure, both emotionally and mentally. When I was first with him my health was doing fairly well. Due to problems with my flat I spent a lot of time at his place. I won't explain how, as it is fairly complicated, but he managed to release a huge amount of mould spores throughout the lower floor of his house. The stress that C was causing me, the mycotoxicosis reaction, and being pregnant took a huge toll on my health. I became bedbound again. This time it severely depressed me too. With help, I got out of the situation I was in there, and almost immediately was able to find my feet, literally, though am still far from as good health as I had previously been in. The lesson I have learnt from this relapse is that despite M.E. not being a psychological condition, for me at least stress plays a huge part in how bad my M.E. is.

So that is my journey, my testimony. I testify that M.E. sucks! I do not believe I will ever make a full recovery. I have a relapse remission condition which is severely affected by stress and anything else that affects my immune system. I will probably spend my life recovering slowly, and then suddenly relapsing. I spent a long time learning to pace, but have now decided to see what happens if I don't, since relapses seem to be out of my control anyway. My hope is that I can spend enough time in good health to fulfill some of the dreams I have for life, perhaps even recover enough to hold down an interesting job.

I miss the days when I was a multi tasking active maniac, but I have come to terms with the fact that I will probably never be that way again. It hurts deeply that I lost friends because I became ill. That is something that everyone with M.E. has to go through. I have made some fantastic new friends as a result though, even though most of them are online and I rarely see them.

Thursday 12 July 2012

What is M.E.?

I've been asked to start sending my blog posts to my mother, by her boyfriend. This is an interesting opportunity since she does not believe I am ill. In pondering to myself which posts to send her I have realised that for all I have written I don't think I have ever actually explained what M.E. is. As such, I endeavour to do so today. I will also have the interesting task of explaining to her (someone who has never used a computer in her life) what a blog is. My mother does not read or listen to what you say; she reads between the lines, making up her own version. For this reason, this post may be a little odd, as I will be trying to leave no leeway for her to change my meanings.

So, what is M.E.?

Many doctors are under the outdated preconception that M.E. is a psychological condition, that sufferers choose to be ill and make themselves more and more ill through their neuroses about illness. This is not the case. If it were the case sufferers would not be reporting symptoms within the same range.

The World Health Organisation (WHO) and the National Institute for Health and Clinical Excellence (NICE) recognise M.E. to be a neurological condition. This means that it is a condition of the nervous system; the brain and the spinal column. It is physiological rather than regarding emotions and thoughts.

Anecdotal epidemiological evidence shows that M.E. seems to appear in clusters. Such evidence is difficult to gather however, since M.E. seems to be a condition that develops years after it is originally contracted. M.E. often appears to run in families. This may well be due to clustering though, rather than proving it to be a hereditary condition.

As yet, there is no definitive answer as to exactly what M.E. is. There have been various suggestions over the years. Most recently a study showed that it is likely to be linked to the Xenotropic Murine Retro Virus (XMRV). Further studies however proved to be inconclusive. Dr Myhill believes M.E. to be the effect of Mitochondrial Failure, I will come back to this later. Many also believe that it may be related to the Epstein Barr Virus.

Many people with M.E. report the onset to have followed an episode of Glandular Fever. Glandular Fever is caused by Epstein Barr. Some people cannot recall a specific viral episode prior to the onset of their illness. Epstein Barr often affects people without them realising it; it can be as mild as having a little phlegm in the throat for a few days, but then it remains within the system indefinitely.

M.E. nearly always seems to follow a trigger event. As already suggested, for most, this trigger event is a viral episode. For others it usually follows a very stressful event, it could be a mental breakdown, mourning, an allergic reaction, etc.. Anything that affects the body suddenly, for a notable amount of time. Such a stress may be psychological, but it will also affect the body physically.

There is much confusion between M.E. and Chronic Fatigue Syndrome (CFS). I do not believe there is an actual line in the sand in regards to the difference, but the following is my understanding. 'Chronic Fatigue' is an umbrella term, used to encompass many different fatigue problems. If someone is reporting abnormal levels of fatigue (chronic fatigue) they need to be tested for various different fatigue related illnesses and conditions. 'Chronic Fatigue Syndrome' is where a persons condition becomes more symptomatic than simply having problems with fatigue. They start to develop more physical symptoms, such as headaches, chronic itching, pain in their limbs, cognitive struggling, etc.. M.E. is the most severe form of CFS, rendering sufferers unable to work, usually housebound and sometimes bed bound.

The problem with the definition of this condition being so fluffy is that it makes it very hard to receive a diagnosis. It makes it difficult for any doctor to take us seriously, and know how to treat us. And it causes problems for researchers, as they do not know if they are researching one condition or many. How can they have a sample group if the sample group may be containing sufferers who actually have different conditions?

Until recently a diagnosis would not be made until someone had been ill for six months or longer. The reason for this was that the symptoms for Post Viral Syndrome (PVS) and the symptoms for M.E. are virtually identical. Recent thinking is that if PVS goes untreated a patient may develop M.E.. It is in the interest of everyone, the patients, doctors, NHS, and government, to treat sufferers early so that less damage is done.

The International Consensus Criteria for M.E. explains very specifically how to diagnose M.E.. Because M.E. is a syndrome sufferers will not all experience exactly the same symptoms. The Consensus Criteria explains which symptoms are likely to go together, how long patients will have had them for, etc. Doctors should now be using this to diagnose M.E., but many do not.

(1)
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.urinaryurgencyorfrequency,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.


A lot of doctors argue that the M.E. symptoms are the physical expression of depression. They believe their patients to be depressed, even if the patients are not struggling with lowered mood. The defining difference between physical depressive symptoms and M.E. is post exertional malaise. Exercise is often used as a treatment for depression. It genuinely does help with depression, lifting peoples mood if they persist. When someone with M.E. exercises however, their symptoms are exacerbated. This of course does not simply apply to a physical work out, but to every day activities, including cognitive pursuits.

Dr Myhill believes this symptom to be caused by Mitochondrial Failure. (2) "Mitochondria are the cell's power producers. They convert energy into forms that are usable by the cell. They are the sites of cellular respiration which ultimately generates fuel for the cell's activities." The muscle cells of the body contain mitochondria. If the mitochondria fail, every muscle cell is fatigued. This easily explains such symptoms as muscle pain, cardio myopathy, and headaches. From here, many of the other symptoms can be explained, for example Orthostatic Intolerance is caused by problems with blood pressure; possibly an affect of the heart muscle being fatigued.

Recovery from M.E. is rare in adults. Adolescents who develop M.E. usually make at least a partial recovery. Usually those who have recovered still struggle with post exertional malaise a little for the rest of their lives.

M.E. is a cruel condition. It's an invisible illness, so sufferers are judged very harshly by the public. Every person who has M.E. tells a story of losing their life. It seems particularly to strike those who were very active, leading busy social lives; burning the candle at both ends. M.E. is detrimental. Sufferers are not only forced to give up their social lives, but usually their careers too. The ability to have a normal family life is stretched to the limit. Most women with M.E. struggle with pregnancy. People who had previously been highly intelligent find themselves struggling to make sentences, or read paragraphs. Sufferers frequently find themselves asking themselves who they are and where their life went.


(1) http://www.meassociation.org.uk/?p=7173

(2) http://biology.about.com/b/2008/08/16/what-are-mitochondria.htm

http://chronicfatigue.about.com/b/2011/07/19/chronic-fatigue-syndrome-basics-post-exertional-malaise.htm

http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

http://myalgic-encephalomyelitis.com/US_ICD_10_CM.html

http://www.patient.co.uk/health/Chronic-Fatigue-Syndrome-/-ME.htm

Monday 9 July 2012

Wednesday 4 July 2012

What I really have!


I feel a little guilty posting this really, but the nature of such pictures is that they are sweeping statements, so I'm going with it. (Do feel free to post this to Facebook if you feel it's appropriate). Please do not be offended if you are a friend or family member of someone with M.E. who actually does understand.

M.E. is so frustrating sometimes. At times it feels that absolutely no one believes we're ill. Sometimes I even find myself doubting the existance of the illness myself. Anyone doubting my health condition (especially myself) always proves to be detrimental to my health, as it results in me pushing myself. When I failed the Atos Medical Assessment, for some reason my reaction was to believe that the nurse knew better than I did what I was capable of; I pushed myself extremely hard, crashed and burned even harder.

Possibly, if some of us post this on Facebook, a few people who had previously not really given M.E. much thought will understand that this image is portraying pain and anguish, frustration, and severe illness, and they may just think a little bit more about the fact that we are ill.

We are ill. Please don't doubt it.