Category Archives: Living with an Illness

What Can We Expect and Do to Fight Tory Persecution?

What Can We Expect and Do to Fight Tory Persecution

Last week on election night when I saw the results of the exit polls I felt such despair and grief I cried and cried. The darkness was so profound that I could not even bring myself to talk about it. What made it worse was the fact that I was not alone and when I looked at the tweets of other ME sufferers, they too were feeling exactly the same, in fact some people even feared for their lives. That may seem like some extreme hyperbole but I can assure you, they have good reason to feel that way. So here, finally, are my thoughts on the election results. We are ME sufferers, what can we expect and do to fight Tory persecution? I’m going to tell you.

I don’t really get involved in politics. What I mean by this is that while I have firm political beliefs and ideologies, it’s not something I choose to write about. So I didn’t discuss anything relating to the elections in my various posts and maybe I should have. In fact, in the run up to the election, I was more interested in May being ME Awareness month and I had planned to release a series of videos and articles to raise awareness of this illness. Despite my planning, I had to deal with a bout of food poisoning and then full blown flu in April, which I am still recovering from, so everything got delayed. But I made sure I had registered for my postal vote and I filled out the ballot paper and sent it off. It was a wasted vote because the Conservatives (whom I did not vote for) were assured a win in my area. Yet I still voted. I don’t want to discuss the reasons people should or should not vote or even the electoral system and the pros and cons of ‘First Past the Post’ or how this travesty was allowed to happen. These are things that are being discussed everywhere at the moment. I am more concerned with how the results of this election affect us as very ill people.

Why We’re Afraid

One of the very first things the coalition government did when it came into power 5yrs ago was to wage a war on the ill and disabled on benefits. We were all portrayed as lazy, scroungers and it was implied it was our fault that the country was in such economic dire straits. “We’re all in this together” we were told, while it was the most poor and most ill in society that were attacked. I don’t deny that economic reform is needed, but why start at the bottom? Why not start at the top? What kind of a government points the finger at the ill and poor instead of at the real culprits of the financial crash? I’m not naïve enough to say that things would have been much different under a Labour government, but the fact is that it was the previous coalition that came after us with a vengeance.

Here are just some facts about harmful changes that government has made:

  • The Under Occupancy Charge, also known as the ‘Bedroom Tax’, affects 660,000 families 63% of which have a disabled family member.
  • 33% of NHS Walk Ins, 66% A&E/Maternity Wards and 16% of all other types of A&Es have either been downgraded or closed. The Tories have overseen the worst A&E crisis in 11 years. Not since January 2004 have breaches of the A&E 4 hour target been as bad.
  • There are 477 fewer GP Surgeries, and a 4 fold increase in unfilled GP vacancies since 2010, partly caused by the £987mn real terms cut in GP funding. England’s GP to patient ratio has worsened by 3-4% as population increases. Of 27 EU Countries, the UK is ranked 24th for the number of working doctors it has per head of population (just 2.71 per 1,000 people).
  • They forced through a reorganisation of the NHS which has accelerated privatisation. Private Firms have been invited to bid for £18billion of NHS Contracts. Of contracts decided upon, private health have won 33%, 56% or 70% of those contracts depending on which statistic you place most stock in.
  • According to the UK Statistics Authority the government broke page 45 of their 2010 Manifesto to increase NHS Spending in real terms every year. According to the IFS, NHS Spending is falling 9.1% per patient from 2010 until 2018. The King’s Fund says the NHS is facing its tightest budget squeeze since 1979. And the Nuffield Trust said that NHS spending is falling steeply as a proportion of UK GDP.
  • Despite inheriting an NHS that enjoyed record satisfaction ratings, the coalition, by 2012, had delivered the largest every fall in patient satisfaction with the NHS.
  • A highly efficient NHS Direct has been shut down and replaced by a for-profit NHS111 service that botched its initial launch. 78% of the NHS111 staff who process 111 calls have no clinical expertise. This has caused all sorts of pressures, including additional admissions at A&E. It has been reported that there have been 22 deaths or serious injuries which were caused by failures in the launch of NHS 111.
  • S75 regulations, TTIP, and forced closures of A&Es take power away from the people and place it in the hands of unelected corporations. The government have insisted that healthcare will not be exempt from TTIP. They passed clauses to allow Jeremy Hunt to force NHS closures against the say of the local public, and diminish the court’s role in holding him accountable. He has also passed regulations to push commercial competition in the NHS much more forcefully. Needless to say, all of this is anti-democratic.
  • 9,746 Hospital Beds have been axed under the Tories. The UK now has one of the worst hospital bed to patient ratios in the world. 1,876 Mental Health NHS Beds have been cut and up to 4,000 Psychiatric Nurses have lost their job, and overall mental health provision has been cut by 25%.
  • The coalition ignored National Audit Office warnings that the Work Programme (which has twice been declared unlawful in a court of law) would fail and it failed to deliver jobs for 85%-91%% of participants according to the UK Statistics Authority. The Government’s £200 million Back to Work Scheme helps just 3% of the people it targeted said the National Audit Office.
  • After the coalition ordered private firms to toughen up the Work Capability Assessments, 158,000 were wrongly found fit to work , and had their decision overturned on appeal. 1,300 claimants died whilst being placed in the category to ready themselves for work. 68 claimants died while their appeal against the assessment finding them fit to work was still ongoing.

As I said, these are just some of the changes made by the coalition government; I detailed them here, because they have such an impact on ill people like us. I got these figures from ‘100 biggest failures of David Cameron’s Tories, May 2010 to Present’ and I would urge you to read the full list which gives so many details on detrimental changes to every aspect of our society along with links to evidence of where that information was attained.

Going Forward

David Cameron and his Conservative party now has a majority win and we know, for a fact that things are going to get worse. They have promised to make £12bn of welfare cuts. If they go ahead and do that, many people, not just the ill, will be hit hard. Things have gotten so bad for us in the last 5yrs and we are only assured that they will get worse. But we cannot give up; we have to keep fighting because for many of us it is a matter of survival. The most heart-breaking tweets that I read on Friday and over the weekend were written by ME sufferers who actually feared for their lives; they were not sure they would be able to survive another 5yrs. I have to admit that I am one of the lucky ones as I am not dependent on ESA or any disability benefits. I am well enough to be able to work on my writing, but my earnings are meagre and I survive on the generosity of family and friends. Not everyone has that luxury. I’ve been on Incapacity Benefit when I was truly too ill to work at all. The first sign that my symptoms let up, I went back to work and I had a major relapse which has resulted in me being unable to go out and get a ‘proper job’. I know dozens of ME sufferers and not a single one of them would take a penny from the state unless they really had no other option. More worrying are the changes to the NHS. The medical attention we require is not optional.

What Can We Do?

As ME sufferers we know all too well how our illness is regarded. We fight just to have ME recognised as a legitimate illness with doctors, let alone with those responsible for authorising benefits. People with more recognisable illnesses than ours are facing discrimination, and it doesn’t help that we’re expected to fight when most of us have our hands full just getting through the daily acts of feeding, washing and clothing ourselves. But we have no choice, we cannot allow anymore persecution. There are things that even the most ill sufferers can do.

Get and Provide Support

One of the worst aspects of this illness is the fact that we all feel extremely isolated as we do spend so much time in our homes alone. There is support available online. I have connected with hundreds of other sufferers on Twitter alone. This is important because it shows us that we are not alone. Personally, the anger I feel on my own, turns to complete outrage when I see so many people suffering. This might sound like a bad thing, but that outrage drives me to want to make a change. It shows me that I am part of a community of people and that with so many of us, there is something we can do. On my bad days, I really need that sense of community and understanding and I talk about what I am feeling and going through in large part in order to let others know that I understand what they are going through. So get and provide that sense of community and support by interacting with others as much as you can with other sufferers.

Get Your Story Out There

The media is very quick to make a huge show of the very small minority of benefit cheats and in How The Sun and Daily Mail Lie About CFS Cure Claims I looked at specific examples of how CFS was falsely portrayed in the press. We have to make our voices heard. We have to show the way that we are affected by our illness and the persecution of the state. We have to put faces to the horrors being I know, I know, we’re all ill and struggling, some of us so much more than others. But there are lots of ways that we can put a face to the horror and it is extremely important that we do. In fact tomorrow I am going to be publishing a more detailed list of things we can do to get our stories out there and the different actions we can take no matter what level the severity of symptoms.

Get Involved

Most of us can’t march through the streets with placards; we’re just not well enough! But there are others way to protest and fight for the things we want and need. You can sign up to organisations like ‘38 Degrees’ who are fighting to make the changes that we need. I have been a member for a while now and they have made significant changes. One campaign that I am particularly interested in is the Save Our NHS Campaign. You can choose to just sign petitions online, you can make phone calls for them if you feel well enough to do that, or if you or are a family member are more able, you can take part in organised protest marches. They also have details of local groups in your area that will be fighting to save your local NHS services. The e-mails they send out detail what needs doing where and even if you’re just able to send an e-mail to your MP, or share a story or campaign on social media to help get more people involved, you’re helping, as their past campaigns have shown.

Ask For Help

If you’re facing problems applying for benefits there are organisations that can help. I have friends who have successfully applied for or appealed unfair decisions for ESA and DLA using the guides and advice from Benefits and Work. It is not a free service (I have not used them personally, I do not work for them nor do I get paid for mentioning them here) and costs around £20 for a year’s subscription, but they do have a 7 day money back guarantee, so you can check them out and see if they can help. They’re an independent organisation and funded only by the subscriptions from their members. In their own words: “This complete independence means that Benefits and Work is free to publish information that makes it deeply unpopular with the Department for Work and Pensions, multinationals with an interest in benefits – such as Atos Healthcare, Unum Provident and Capita – and even other advice providers whose dependence on state and corporate funding may have made them reluctant to tell the whole truth.”

You don’t need to use this organisation, ask around online for what you need – there will definitely be at least one ME sufferer somewhere who has been through what you are going through and that will be able to offer a suggestion or advice.

It’s Not Over…

Yes, the election results were an awful blow and many of us have been licking our wounds these past few days. It would have been nice to even have a glimmer of hope that things would change but at least we know the beast we have to fight. We will fight because we really have no choice as the alternative is to die alone, poor, cold, ill and hungry. The elections may be over, but the fight to survive continues. I am the first person to admit that with our health struggles, even blinking hurts some days. We’re ME sufferers and we fight and struggle every day; we now have to translate that into some kind of positive change and we definitely will.

Can you think of anything else we can do to fight for our rights? Let us know in the comments below. Tomorrow I have a special post planned as it is ME Awareness Day, where I will tell you how you can help in the easiest and least taxing ways.

Original Image Credit and Terms of Use

Published by:

Inside an ME Relapse

Inside an ME Relapse
Today I’m going to take you inside an ME relapse because I am currently in the midst of one. In a healthy person, if you over-do it one day, you’ll rest up and be back to normal within a day or two of sleep and rest. As I will show you here, not only will a day or two of rest not result in an improvement in energy levels, but the effects of the extra activity may not even show up in that time. Relapses are a common occurrence among ME sufferers and can be caused by infections, surgery or extra activity such as in my case this time.

Normal Routine:
So this is my normal routine, and if I stick to this, I can usually maintain the level of my health. Usually the most I have to include in this routine is a visit to the doctor’s surgery or grocery shopping, and I can overcome that activity within a few days.

  • Wake up around 7-8am.
  • Begin working 8am (research or writing on laptop)
  • Stop working 4pm and begin wind down for the evening (take a shower)
  • 5pm-7pm cook and eat dinner.
  • Prepare for bed and rest lying down until I finally fall asleep – time varies depending on health and time of the year.

Events leading to this latest relapse:
This is the extra activity that has caused my latest health dramas.

  • Thursday morning woke up usual time got ready and packed and travelled on the train for half an hour to my parents’ house.
  • After 3hrs there, my friend came and picked me up. I spent the rest of the day with her and stayed at hers for the night. Healthwise things were already starting to go wrong; I’d spent the evening talking and sitting up until around 2am, and I barely slept that night.
  • Friday morning woke up and had to return to my parents’ as my dad’s laptop had a problem and then had to see my cousin for lunch. By the time I made it to my cousin’s house, I could feel tremors running through my body. These are really visible when I pick up a glass to take a sip but my hands are shaking uncontrollably.
  • After a late lunch, my cousin drove me home in the late afternoon.

I spent the next 2 days extremely fatigued, but not being able to sleep much and any activity brought on the tremors/shaking again. The best way I can describe these bouts is to say they feel like an adrenaline surge and then the come down from such a surge. But even though I did not feel great, I did not feel as bad as I can do after too much activity. The full relapse did not hit until about Wednesday which was almost a week after I over did it. This is when my whole body began to ache and the fatigue and sleep began to kick in. It’s now Monday, 8-9 days after my visit to my home town and I’m battered. In fact my health seems to be getting worse each day. I can’t put the blame for that entirely on my visit as I know even the tiniest bit of activity since then has been adding to the problem – like trying to walk on a broken leg without the aid of a plaster cast. However, when you work for yourself, you don’t really get sick days as there is always so much to do.

I have tried to reduce my activity where I can and everything seems to be taking me longer to do. I could have usually written this post in one third of the time it has taken me today, and even then it would be better written and have fewer typos. My flat is a mess, as I can’t justify using any energy to clean and tidy. The meals I’ve been cooking require the least amount of effort to make. In fact, this hasn’t been that difficult as during the first week after seeing my friend and family, I had little to no appetite.

The worst aspect of this whole relapse is I’m feeling rather down because I’m fed up of making the same stupid mistakes again and again. I experienced a similar relapse over Christmas and it took me months to get back to my old routine, yet, at the first hint of feeling better I go and blow up my health again. I should have known better. I have been ill for so long that I can’t even use the excuse that I do not know how the relapse game goes. But I miss my friends and family and spend so much time alone, stuck in my little shoebox flat that I fooled myself into thinking it wouldn’t be so bad this time and I was strong enough to be able to handle it. Lies, lies, lies! I can’t have fully recovered from Christmas to have been hit so hard this time. Of course, I’m sure the main reasons for my darker than usual mood is to do with the arrival of spring – the lighter the days get, the worse my mood does.

Original Image Credit and Terms of Use

Published by:

Why I Hate Cyclists

Why I Hate Cyclists
I don’t like to use the word hate because it is a very strong word. But I am seriously starting to hate cyclists. I’ve lived in London my whole life and I’ve lived in the centre of London for four and a half years. I don’t drive and as a pedestrian not once have I been hit, almost been hit, or even felt threatened by a motorist here in the heart of crazy town. I wish I could say the same about cyclists. Just a couple of hours ago I walked to the post office on Earl’s Court Road and I was almost hit by a cyclist at a crossing. The same thing has happened a dozen or so times (that’s ONLY traffic light incidents) since I have lived here. So this is my rant about why I hate cyclists.

Yes cyclists, we know the fact that you choose pedal power over cars is much better for the environment and helps in taking the strain off the clogged up road ways and public transport in this great bustling city. There are campaigns to make the roads safer for you on your bikes so motorists don’t pose such a threat. But what about us pedestrians? Don’t we have a right to safety? It seems that no-one cares because a pedestrian hit by a person on a bike is not likely to die, whereas a cyclist hit by a car can often be lethal. But I’m an ME sufferer, and I live a limited life as it is and am usually in great pain. I have few opportunities to go out and walk and when I do I cherish that time out. If I am hit by a bike, recovering from that will take me so much more time than it would for a healthy person and pain-killiers and other medication can also have an adverse effect on my health. However, ill or healthy, all pedestrians have the right to be able to walk without fear of being mowed down by a person on a bike.

After the fourth time I had a cyclist almost careen into me at traffic lights I actually checked online to see if cyclists did not have to follow the red light rule. I spoke to one cyclist friend who said there are a few bad apples that make all the other cyclists look bad. Really? Then I must be the unluckiest pedestrian because I rarely go out and even more rarely have the chance to walk when I do, so how the hell do I seem to be running into so many kamikaze cyclists? These all seem to be experienced cyclists riding their own bikes as well.

However, thanks to that bike riding pillock Boris Johnson, pedestrians are not even safe on the pavement. I can’t tell you the number of times I’ve almost been ploughed down by an idiot on one of Boris’ Barclays’ bikes speeding along the pavement. These are normal pavements, and not shared lanes – the cyclists should not be there and yet they are and actually have the temerity to be galled by the pedestrians in their way. The most dangerous time for pedestrians on pavements seems to be during the morning rush hour especially when there’s a train or bus strike and inexperienced people rushing to get to work are trying one of Boris’ bikes.

Even my rare walks in the park are ruined by bloody cyclists. I walk down the shared pedestrian/cyclist lanes in fear, because I have had cyclist come speeding up behind me so many times. How the hell am I supposed to know they’re there? I walk on the side in a straight line, but that hasn’t saved me from being sworn at by a cyclist speeding by. Even worse is when there are clearly posted signs showing areas where cycling is not allowed and cyclists just ignore them. They want their own lanes and superhighways, well us pedestrians have our own lanes, it doesn’t stop a large number of cyclists from invading our space.

They say they’re not seen by motorists and yet they don’t seem to see ‘No Cycling’ signs, or red lights or pedestrians. They quote statistics about how no pedestrians have been killed by cyclists, but does that mean they can continue doing what they want? They say there are only a few cyclists who behave badly, yet I’ve had dozens of experiences and I’m not even out there every day or even once a week. Is it a wonder that there are a growing number of pedestrians like me who have just had enough and hate cyclists?

Image Credit and Terms of Use

Published by:

Do You Complain Too Much?

Do you complain too much?

Let’s face it, to one degree or another we all complain. Here in London, I sometimes think it is easier to speak to a stranger using a complaint than with a nice comment. If I was waiting for a train and I turned to the person next to me and said “These bloody trains are never on time!” that person would most likely agree with me and tell me about how last week they had to wait an hour for a train. If I turned to the same person and said “Wow, this is a lovely station isn’t it?” they’d most likely think I was a weirdo and avoid eye contact. But not all complaining is equal, and some of us, rightly or wrongly feel like we have more right to complain than others and also feel that we should be able to voice any and all complaints to certain people. When you are the sufferer of a serious chronic illness, there is plenty to complain about. But how much should we complain about and to whom? Do you complain too much? This is something I want to take a look at in this post.

What is complaining?

A couple of dictionary definitions of complain are to “express dissatisfaction or annoyance about something” or “to express feelings of pain, dissatisfaction, or resentment”.

Why do we complain?

Keep in mind that I’m not a psychologist, so these are just my personal opinions on this topic, but I think there are generally 3 types of complainers, each with their own reasons for complaining:

  1. The Fixer: This type of complainer is looking for a way to fix a problem. It could be when you speak to the manager of a hotel you’re staying in to tell them about how your room was not cleaned properly by housekeeping, or in your personal life, when you tell your partner that leaving a wet towel on the suede sofa is not on.
  2. The Venter: This person is not looking for solution, but feels better once they feel they’ve been heard and maybe received a little sympathy. Examples include calling your best friend to talk about the awful date you’ve just been on, or even an ME sufferer taking to Twitter to talk about the worst treatments you may have experienced. Complaining won’t change what happened or stop them from happening again, but will often evoke sympathy and even give you the opportunity to laugh about what happened.
  3. The Chronic Complainer: The chronic complainer doesn’t want a solution, will not feel better by complaining, but always seems to have something to complain about and often about the same things. It’s difficult to know how to deal with a chronic complainer because there’s nothing you can say or do to help them.

The Chronic Complainer

I think we can agree that the worst of the 3 types of complainers I have detailed above is the chronic complainer. In the first 2 cases, something is gained from complaining. But the chronic complainer achieves nothings and destroys much. These types of people often come across as possessing a victim mentality, and they want everyone to know how bad they have it. We all know a chronic complainer or two (if you don’t, you’re either very lucky or may be unaware that you’re the chronic complainer). I am more than happy to spend my time and limited energy on helping someone, even if it is just by lending an ear. But, that’s just it, there is no helping a chronic complainer. I once had a chronic complainer sit and talk about how awful her life was for 5hrs. It wasn’t a dialogue, she wasn’t interested in my life, she didn’t want to hear about any solutions I had to offer, and even agreeing with her didn’t seem to help, because it just made her feel like even more of a victim.

Another chronic complainer I know will complain about the same thing every day; EVERY SINGLE DAY! Yes, some of the things he talks about are terrible, but when he does absolutely nothing about changing his situation or solving his problems and is not interested in any advice. In fact, the last time I tried to offer some advice about how he could take some power back in a situation, he got very angry with me for not understanding him and for not listening.

How to Deal with a Chronic Complainer

I know a lot of people who suffer from chronic illnesses. Many have ME, but I also know people who suffer with other illnesses. I can happily say that almost all these people do not complain at all. They just get on with their lot and make the most of the lives that they do have. The Chronic Complainers I do know are not complaining about any illness, but about every other aspect of their lives. These are the steps I took to deal with the chronic complainers in my life:

  • Limit Interaction: I don’t mean that I stopped talking to the Chronic Complainers, just that I told them that due to work and health routine I could not be avaible around the clock to respond to texts and e-mails. I made it clear that they were free to contact me, but not to feel offended of that I did not care if I didn’t immediately respond. This immediately made me feel better because it gave me some time and space, but it also still allowed the other person to vent their frustrations.
  • Validation: Both of the Chronic Complainers I know the best are very lonely people and I think that the fact they didn’t have anyone to talk to in a normal setting is what amped up the victim mentality. If they had some kind of a network of support maybe things would not have become this bad. So I never invalidated their complaints even if at times I really felt the complaints were so petty or self-inflicted.
  • Help: But while I listened I never offered one bit of advice or help, because past experience had shown me that nothing good ever came from that. They did not want advice, just to be heard. What I did do was ask “What will you do about that?” I noticed that they spent so much time on looking at the hopelessness of their situation that they never actually considered taking any curative action.
  • Shift Focus: No matter how much you love the Chronic Complainer, you’ll get to a point in the conversation when it’s time to change the subject. Yes, listening is good, but you can’t do that forever, as they’ll just keep going on and on. I’d try to talk about something nice, just to shift the focus. This does not mean jollying the person out of their woes, but can be something as simple as asking them about anything they do like in their life at this time, or if they could change everything to feel better, what would they change? This hopefully will get them from looking at everything that is wrong, to looking for something that is right. Of course, you do have those people that will claim there is nothing good, so be careful how you word your question.

If you don’t know what to say or do, then be honest, just say “Yeah, it sounds like it’s really hard for you, I don’t even know what to suggest.”


Yes, not all complaining is equal and there is definitely something to be achieved from a good complaint, but if you have nothing but complaints and complaining does not make you feel better or make your situation better then there is definitely something wrong. If after reading this you recognise some of the Chronic Complainer traits in yourself, don’t beat yourself up about it. Things must seem really bad if you feel that much of a victim. But understand that complaining about the same things again and again will end up alienating those that you love, especially if you don’t really want any help or advice. Consider speaking to a counsellor to help you navigate this hard time in your life.

Do you know a Chronic Complainer? What advice and tips do you suggest?

Original Image Credit and Terms of Use

Published by:

Effects of a Gluten Free Diet on ME

Effects of a Gluten Free Diet on MEYesterday I had for my first doctor’s check-up since I went gluten free (GF) back in October. You can read more about the reasons behind that decision in Coeliac Disease, ME and me. I want to give some feedback about the effects of a gluten free diet on ME symptoms, in my case anyway and to talk about my health in general at this time. I’ll be going for more blood tests next week, therefore this isn’t a complete picture, but I still want to share some things with those who are considering making the changes that I have made. Please remember though, that if you have ME and decide to go gluten free, please speak to your own doctor first especially as any effects you experience may be very different from my own.

How Easy Has It Been to Go Gluten Free

The first month was probably the worst both for the withdrawal symptoms and finding food to eat. I felt so ill for about 2 weeks; I had a permanent headache, felt queasy and was irritable as hell. Also, it was difficult to go from having the run of the supermarket, to mostly shopping from just a few shelves in one aisle. I have a Tesco across the road from me, and this is where I usually shop as it is convenient. I did find that Whole Foods had more options for gluten free food, but it’s not always easy for me to get there.

Before going gluten free in October, I didn’t eat much bread, maybe once a week if that. The reason for this is that I found my IBS symptoms were much worse after eating bread. I did eat pasta (I live with an Italian) so I needed to be able to find a good alternative for that. I had tried gluten free bread many years ago and I absolutely hated it; horrible dry and tasted of rice. The bread options have improved A LOT! So that’s one thing I have been enjoying. As for the pasta; I don’t even like most of the normal pasta we get in the UK, and I used to get mine from Italy, so I was really worried about what I was going to do about that. The GF pasta is absolutely disgusting. I’ve tried so many brands, and the best of the batch is probably Dove’s Farm, but even that is not ideal. The biggest problem is that I don’t like rice, and I like my pasta al dente, so floppy, gummy pasta that tastes of rice is horrid.

Just when I thought I would never be able to enjoy pasta again, I discovered that Italy has some of the best gluten free food in Europe! I don’t know why that surprised me, but it did. I managed to get a few boxes and I’m happy to say it tastes as good as the original pasta.

Irritable Bowel Symptomatology

What I had noticed within about a month of going gluten free was that many of the irritable bowel symptomatology I had experienced for over a decade greatly improved. At the time of writing this I’ve not had any gluten for 4 months and I experience very little pain or any of the other embarrassing and annoying problems usually associated with IBS.

Weight Loss

As I said, I still have a batch of blood tests to go through next week, but my doctor has said this is just my usual work up, and so I feel confident in giving this feedback before I get the results. The main thing the doctor did find was that I had lost 7lbs (3-4kgs) since I was weighed just before I began my gluten free diet. This may not sound like a lot over 4 months, but I have been the same weight for over 2yrs. No matter what diet I try, I just cannot budge any weight. Of course, weight gain/loss is very low on my list of priorities with all the other health problems. However, I do generally eat very healthily. I do not eat much sugar, nor do I eat much processed food. I generally eat a high protein diet with fresh vegetables and I rarely, if ever, have any alcohol. Still, I’m fat and there’s little I can do about it as I can’t exercise. I’ve talked more about my weight issues before, so you can read about that in The Issue of Weight and ME/CFS

Fatigue and Pain

Unfortunately I don’t have much positive news to report when it comes to my other ME symptoms. I guess that’s not entirely true. Up until December I was feeling, relatively speaking, OK. This is one of the main reasons I made the decision to visit family over Christmas. However, I’ve been really ill since then. Perhaps I would have been more ill had I not been on a gluten free diet, it’s so hard to say, but as it stands I’m ill enough for much of my activities to be hampered.

I’ve had a really painful elbow since Christmas (I carried some heavy – for me- bags) and it is Tennis Elbow. My doctor has prescribed me some anti-inflammatory meds and told me not to use my arm. But it is near enough impossible for me to do anything without my right arm…I’m using it right now as I type! I have tried to reduce activities, and I’m hoping that will be enough. I do not want an injection in my elbow!

In general, I’m finding that any activity is leaving me in a lot of pain and very fatigued, so I’m trying really hard not to over-do it. I’ve also had at least 2 cold/flu-like bugs since the year begun, so that has not helped at all. I’m hoping once I’m over all this, I’ll have a better idea of how going gluten free has affected these ME symptoms.


Overall, I would say the gluten free diet has definitely been beneficial, especially when it comes to IBS type symptoms, but the one area where it has hit me hard is my wallet! Bread has suddenly become a luxury item in my household.

Gluten Free Aisle: Image Credit and Terms of Use

Published by:

Worst ME Treatments

Worst ME TreatmentsI had a lovely Twitter session this morning with a great group of ME sufferers that literally had me howling with laughter. One Australian Twitter user asked “After the serious #SEID IOM discussion, I need some Friday night levity. What’s the most ridiculous treatment someone recommended to you?” and it got me thinking of the worst ME treatments that I’ve tried and some of the even worse things people suggested but I had the good sense not to try. So here I will share some of these with you and I promise, if you’ve tried these and found help or even if you’ve tried even more ridiculous ‘treatments’ I promise there is absolutely no judgement. I know this illness and in our desperation to get better, we will try almost anything and also some people find relief where others do not.

Most of the ones I tried in the following list were in the first few months after I was diagnosed. I didn’t know anything about ME, but I had no intention of accepting that I was ill and wanted to get on with my life. I went away for 4 months and tried many alternative treatments, some of which I had never even heard of and I knew nothing about.


So this seems like a rather conventional and good treatment, especially if you have mobility issues. This was something my rheumatologist recommended about a year before I was actually diagnosed with ME, so I can’t blame anyone for anything here. The physiotherapist could see that anything I did was causing me a lot of pain and she said my joints would heat up as if I had RA, but I did not have that. She also said she didn’t think physiotherapy was right for me as it was becoming apparent the issue was neurological and she would need to speak to my specialist and she’d let me know. Good, right?

Not really, because she apparently forgot all about this and suggested therapy in the hydrotherapy pool. So I went back a week later with my swimming costume and climbed into the pool with my physiotherapist and another patient at the other end of the pool. She told me to move my head from side to side, to loosen up my neck while she gave the other patient instructions. The next thing I knew I woke up on a metal lift as I was being lifted out of the pool – I had passed out. No more physiotherapy in or out of the pool after that.


There may be shock and horror at me having included this here, as so many people swear by it, but after my experiences with Homeopathy and subsequent research, this, for me at least, definitely belongs on this list. This was the first alternative treatment I tried because my friend said she always used it instead of allopathic medicine.

The homeopath that I saw was a lovely lady, but her little sugar balls did absolutely nothing to help me! All I managed to do was make myself even more ill by going to her office every few days and I spent a fortune.

Anyone who is considering trying Homeopathy, please watch the following clip where Ben Goldacre very succinctly talks about it.


Another one that I know many people find helpful, but it didn’t help me. I will admit that some people may find someone pressing points on their feet relaxing and thus this ‘treatment’ acts as a way to de-stress. But as a cure? It did not have any positive effect on me, except lightening my wallet, and that’s hardly positive. I was bedridden for 10 days after the session and the practitioner claimed this was my body detoxifying. I now know it was me over-doing it by talking, interacting and pushing myself to do more when I should have been resting.

I have to admit that I don’t like anyone touching my feet (I was once compared to Eddie Murphy’s character in ‘Boomerang’ for my issues with feet) so I didn’t even find the treatment at all relaxing.


Bear with me a moment before we actually get to the gingery part of this treatment. This one was thanks to a yoga teacher who decided she could cure ME. The day she came around to see me, I was laid out flat and having problems breathing. So the deep breathing exercise she put me through nearly knocked me out. Let alone the actual yoga exercises she tried to get me to do. These were nothing drastic; I got to do them lying down, but I was so fatigued and in so much pain anyway, that just moving my head around caused serious pain and I burst into tears. I was told I was not being positive and had to push through the pain.

She asked me about what I ate and when she suggested a few things, I told her I had an intolerance to them. She said that was nonsense as there was no such thing as an allergy or intolerance. If my body was reacting I needed more of that food type, not less. This was why she suggested I needed to rub myself with ginger juice from head to toe every day.

I’m ashamed to say I actually did it. By that time I was so worried about appearing ‘negative’ if I refused, that I was afraid to protest anymore. Wow did that that ginger burn! After 3 days I had to stop because I developed a rash all over my body. I’m more confident about myself and know more about the illness now.

The Lightning Process

Right, so we’re moving into the territory of treatments that people recommended but that I never tried. I looked into this one myself after seeing it suggested in a few ME forums, but I didn’t try it at the time simply because I didn’t have the almost £600 that it cost. But I did go back and look at it again when my mum offered to give me a loan.

What I don’t like about this treatment is the purely psychological approach that it takes with an illness that is physical. I’d also read feedback from people who had tried it and who said they were blamed quite strongly by their practitioners when the treatment did not work. A friend and fellow ME sufferer did try the treatment and she said it helped her. She also gave me copies of all the paperwork she had been given on the course as a way to encourage me to try it. Unfortunately seeing these actually increased my doubts about this so-called treatment.

Let me be clear; I think psychological approaches can help us to have a better understanding of our situation and help us to deal with the stresses of being ill, but they are not a cure. As someone who had previously studied NLP and been a very positive person, but who had still managed to get ill, I was and continue to be very sceptical.

If you’re considering this treatment, please do your research; there are some very negative reviews from people who have actually tried it and some very good justifications for why it could not work. This article on the ME Association site has some varied views. One person states “IF THE Lightning Process worked for Ms Gibson, she never had ME in the first place. Her understanding isn’t congruent with 60 years of biomedical research into what the World Health Organisation defines as a neurological disease.” I wholeheartedly agree.

Drinking Cow Urine:

So I wanted to end with the most bizarre and yes folks, you read that right, someone once suggested that I drink cow urine as a cure for ME. The man who suggested it (a family friend – or at least he used to be before that suggestion) even offered to give me a bottle of the stuff that he just happened to have lying about. Now, I should add that he is Indian, so with the cow being a sacred animal in India, this may be connected to some religious belief. But surely a cup of milk would have sufficed, why urine? An option for those that are lactose intolerant, perhaps?

Needless to say this was one I did not consider let alone try! I talk about this one a little more in the video below:


Original Image Credit and Terms of Use

Published by:

Birthdays, Juggling and ME

Birthdays, Juggling and ME

It may be a strange thing to say on a blog where I write about chronic illness, but I don’t really think about being ill or the effects it has on my daily life. Most of the time I practice mindfulness and I try to live in the moment. There are a couple of times a year when this is not so. The first is 26th August, the anniversary of the day I became ill, and the other is today, my birthday. It’s normal for my birthdays to be a time of reflection for me, and this year is no different. But the flavour of that reflection depends very much on what is happening at that time in my life. Some years, especially in the beginning of this illness, I was angry and depressed that I couldn’t celebrate with friends or go out for my birthday as I had in the past. In later years I was just glad I survived another year. This year is different.

I’ve been very ill for the past fortnight and I’ve been really struggling. The physical symptoms are nothing I have not endured before and I know it will pass. However, this suffering is made all the worse because it is payment for the socialising I did over the Christmas holidays. I didn’t even do that much; I spent time with my family and my favourite cousins and only left the house on 3 occasions. I loved every minute, but it cost me dearly. So the past few days I’ve been thinking of loved ones, especially the ones I have lost. Today is the second anniversary of the passing of Uncle Giani and I find myself remembering him and all the other people that have been lost along the way.

As remarkable as it may seem, this illness has helped; it has forced me to simplify my life. There is no more ‘should’ because I no longer feel like I have to do anything I don’t want to. No longer do I feel the pressure of ridiculous obligations. I now only do what I want to and I only spend my precious time and energy with those that I love and I’m totally indifferent to everyone and anyone else. But how much time and energy do I have even for those that I love? My dad just called from his holiday home in Goa to wish me a happy birthday and I could barely speak. This is what weighs on me; the fear that I can’t even stay in touch with my loved ones because of my health.

I’m 39 years old. 30 bloody 9! This is the last year of my thirties and it’s not so much the age that affects me, but the fact that I’ve been performing this ME juggling act since my mid-twenties. Keeping those balls in the air gets harder and harder and this is not always because of deteriorating health. I may have been in a kind of stasis for over 13 years, but the world around me has been speeding on. This means that more and more balls are added all the time. My nephew is 16 months old and I want to see him more, there are other loved ones that I want to see, also I have so many more projects that I want to complete, but I juggle and I juggle, always trying to make sure that the most fragile ball, the one of my health, stays aloft, even if I have to let others fall.

I’ve come to accept that there are things I just cannot do. I was once an avid traveller, but I no longer even have the desire to travel. The same goes for so many other things that I once wished I could do. But how does one give up the desire to spend time with loved ones when life is so short? Even if I could, I don’t want to. If I get one wish for my birthday, it is the hope that the ‘health’ ball becomes less fragile before my next birthday.

Original Image Credit and Terms of Use

Published by:

Ill or Not, We Are All Misunderstood

Ill or Not, We Are All Misunderstood

Last week I wrote about The Fault in Our Stars but the post was more a rant about how misunderstood people with illness are, not to mention how much we underestimate the intelligence of teenagers. Well, it turns out that I have more to say about the being ill part (shocking, I know). I’ve been thinking about how people with illnesses like ME strive so hard to make it understood that they have a real illness, and yet even when people do grasp that truth, we’re still totally misunderstood.

If you’re an ME sufferer, have you ever had someone ask you about your illness or what you do all day, only for that person to respond with “I would die if I had to live like that”. Yeah, I know, it sounds like an unbelievably inconsiderate thing to say, but it is amazing how many times I have had that response from people, and I’m not the only one.

When I first became ill, I was very angry. Why did people not understand? But the truth is that people cannot understand, and over a decade later, I’m glad they can’t as I wouldn’t wish this hell on anyone. Just about everyone is limited by their own preconceived notions about a given situation. We live in the twenty-first century, and there is a lot of faith in medicines and doctors in general. I can understand that. If someone has not spent vast amounts of time in doctor’s surgeries and hospitals, one can be forgiven for thinking that in this modern era there is a cure or treatment for everything and all illnesses are understood and treated well. So when an ME sufferer shows up with this crazy and mostly invisible illness it can be difficult to understand. I didn’t understand it myself when I first became ill, and I was convinced if I just got a diagnosis, I’d be given a prescription and all would be well again. Oh, how naïve I was.

Then when it’s established that you do actually have an illness, those closest to you start to see how drastically your life has changed. It’s traumatic enough when you’re ill and have to stop working, socialising and in some cases even leaving your bed. Of course a healthy person would recoil from the thought of having to live like that. I can totally see how it is a kind of living death, because…newsflash…that’s exactly how so many ME sufferers feel, at least at the beginning (and maybe some of the middle). However, most ill people that I know establish a new life for themselves within the new parameters that the illness has created.

Before I became ill, I always wanted to write, but I never had the time to do it. I may be foggier and slower now than when I was healthy, but I do write. Among my ill friends I have a published author, a very accomplished knitter, someone who is about to propose to her girlfriend (since I wrote this, she proposed and they’re getting married!) and a woman who runs an internet business from her bed, and that’s just off the top of my head. Ill people don’t spend all day every day lamenting their circumstances. Of course we all have bad days and even weeks, and anger and depression can make an appearance then, but isn’t that true for most healthy people too?

I’ve noticed that when people first get ill, they’re more likely to talk about their illness. I know I did and I even know why I did it. I felt like I had to convince people that I was really ill and how serious the illness really was, because I felt so guilty about not being able to be there for social events or even just a chat, like I used to be. Now, I’ve made my peace with it, and I even understand why people react the way they do, and just about every person with a chronic illness has reached or will reach this same awareness and serenity. I know that at some time or the other, people with an illness feel misunderstood, but we can often misunderstand healthy people too, who are limited in their understanding by the very fact that they have not had a chronic illness.

Original Image Credit and Terms of Use

Published by:

The Fault in Our Stars

What it’s like to live with an illness

The Fault in Our Stars and misconceptions about people living with a chronic illness.While I was enjoying my time off last week, I decided to treat myself to some of the books and movies I haven’t had the time to read/watch. One book that I have had on my list for quite some time is The Fault in Our Stars by John Green. Apart from being an author of young adult fiction, John Green also has a YouTube channel with his brother Hank, and I love their videos. They’re both such intelligent and proud nerds. They also promote and raise awareness about a variety of causes from political situations in the world, to environmental issues and do so with humour and kindness. I happened to already have TFiOS, so I decided I would give it a go and I was not disappointed.

The story is told from the perspective of Hazel, a teenage cancer patient and begins when she is urged by her mother to attend a cancer support group. I have to admit that I am not a huge fan of young adult novels because…well…the stupid teenagers annoy me. There, I said it. I have been a teenager and I was never that idiotic, and even if my memory fails me, I know plenty of teenagers who are so much more than their literary counterparts. I found the characters in this book to be a complete breath of fresh air. They’re witty, intelligent, while still retaining the innocence and naivety of teenagers. The fact that they’re also dealing with cancer, adds complexity and depth. I fell in love with the characters, was totally drawn into their adventure and was heartbroken for them too.

After I read the book, I went to Goodreads to rate it and to browse through the comments and reviews. I’m never interested in why people feel the same way about a book as I do, I want to know why people feel differently about a book. I came across a very long rambling rant about how The Fault in Our Stars was the worst book the reviewer had ever read and she had a number of people who agreed with her. Just because a book is popular, it does not mean that everyone will like it. For example, I loathe and detest the extremely popular Fifty Shades of Crap Grey and Hamlet, Romeo and Katniss Everdeen are just some of the characters that annoy me. We won’t all connect with or even understand the characters in different stories, but what I found remarkable in this girl’s rant was that she accused the author of having no idea what teenagers with cancer would feel like and she didn’t think teenagers would be that witty or intelligent. This is what she had to say: “One thing I don’t buy is that teens with cancer suddenly become magically wise. They become terrified, confused, depressed and angry. They DON’T magically gain great insight in life and go around puking long monologues about the meaning of life.” The author, John Green, did actually work with cancer patients and their families as a chaplain, but even if I did not know that, I do know plenty of teenagers who have ME, and they do not spend their time terrified, confused, depressed and angry. My friend Peter has had ME since he was 14 years old, and he is one of the most well-read people I know because of all the time he had to read so many books, much like Hazel in TFiOS. Also, when you’re faced with a situation not only where you could die, but where you are dealing with a massive disruption to what people perceive as a normal life, you find meaning in your own life. I not only found that to be totally plausible, but know it to be so. I’ve been ill for over 13 years and I can assure you that I find meaning in so many things that other people just take for granted.

I find it ridiculous that we think so little of teenagers and this is what John Green had to say on his website: “Teenagers are plenty smart. I don’t sit around and worry whether teenagers are smart. I mean, most of the people currently reading ‘The Scarlet Letter’ and ‘The Great Gatsby’…are teenagers.” This was evident when I last met up with my cousin and her 15 year old son. He’s a teenager, and loves computer games and has a new trendy hairstyle, BUT just in those few hours I spent with him, he discussed the art in the National Gallery in a very thoughtful and intelligent manner and talked about The Tale of Two Cities which he was reading.

The Fault in Our Stars is a wonderful, touching story and I would recommend it as suitable for everyone. Check out some teens talking about the trailer for the movie and what they thought of the book below.

Published by:

Paying For Christmas

Post Exertional Malaise (PEM) or Postexertional Neuroimmune Exhaustion (PENE)

When you mention paying for Christmas, most people will immediately think of the credit card bills that are soon to show up. However, for people suffering from ME, there is an entirely different payment due. When a person with ME partakes in any kind of activity, they suffer from something called Post Exertional Malaise (PEM) or Postexertional Neuroimmune Exhaustion (PENE). Some people end up paying weeks later, as the exertion credits accumulate, but for me I usually pay the price 24-72hrs later. In that time frame, I just feel worse and worse, and find myself being able to do very little if anything.

PEM or PENE is probably one of the hardest things for non-ME sufferers to understand. You may have seen your ME sufferer friend or loved one look fine on Christmas day, but when you ask to pop around the next day, or invite them out for lunch the day after that, not only do they refuse, but you can’t even get them on the phone to speak to them.

This is because most ME sufferers spend each day performing a careful balancing act of not exceeding their physical limits and making sure they get adequate rest. Spending Christmas day with family members blows that balancing act out of the water. The exertion is not just the physical activity, although that in itself can have a huge effect, here’s a list of other factors that may have overloaded the ME sufferer:

  • Speaking: Maintaining a conversation or even multiple conversations can take a lot out of an ME sufferer, and it is one of the reasons I rarely, if ever, speak on the phone. It’s just not worth the effort it takes.
  • Thinking: Continuing on the conversation path, when you speak to someone, you also have to think of what you want to say, and this takes up energy. ME sufferers often experience cognitive problems, so our brains can get a little foggy when called upon to even do something as simple as talking.
  • Noise: I spent one Christmas with only four adults, one child and a dog and I was so overwhelmed by the noise. I just couldn’t relax and for most of the day I felt like all my muscles were clenched as if I was in a real state of stress. They were not particularly loud by normal standards, but I found the noise extremely jarring.

The video below is a vlog entry by documentingme in the midst of a post exertional period. As she explains, she did not go out or even do anything physically, but had a friend come and visit for a few hours with her dog while she rested on the sofa.

After a period of activity it is really important for the ME sufferer to get adequate rest. This means proper rest. Here’s what Dr Myhill says about proper rest: ”By resting, I mean complete rest from exercise, visitors, telephone calls, reading, computers, talking, child minding, noise and TV. All these count as activities which have to be carefully rationed through the day.”

If you’re an ME sufferer who is paying for your Christmas activities, firstly I hope you had the best time, if you didn’t, don’t worry, just spend time resting now. I know it’s not always easy to do, especially if you have children or have family staying over. But take advantage of whatever time you can and REST! If you have a complete relapse it can take you weeks, months or even years to recover from that. I had my last big crash in 2011, when, after over-doing it at work, I then REALLY over did it with my sister’s wedding. I should have rested but I didn’t. Here, at the tail end of 2014, I have yet to get back to my pre-crash level of energy and health.

Published by: