The ME/CFS Ghost » Blog Archives

Tag Archives: ME

Worst Things to Say to a Person Living with a Chronic Illness

One of the most difficult aspects of living with an invisible chronic illness like ME is the fact that people don’t understand exactly how ill you really are or they do and give the most unhelpful advice. This is something I have experienced myself and I’ve heard other sufferers say so many times.

But most of us don’t complain about it or even pull up those people even when they’re saying the most outrageous things. This is for a number of reasons from being too ill to muster the energy to do so, or just not feeling brave enough to say anything.

So I was thinking about Christmas and the holidays and how many of us must have had to interact with friends and family who just don’t understand. How many of us must have heard judgemental comments or advice all well-meaning and given in a helpful spirit, but which have left us feeling even worse?

Yes, we sound whiney and ungrateful when we complain about these comments, but that’s only because healthy people don’t understand how devastating their words can be. So to try and explain this I made this the subject of my latest video titled ‘Worst Things to Say to a Person Living with a Chronic Illness’. Please be sure to like the video and subscribe to my YouTube channel. I will be uploading every week now and I am taking requests, so if there is an aspect of living with a chronic illness that you want me to cover or even rant about, let me know and I will be happy to oblige.

Let me know in the comments below or even better on the comments section of the video, what are the worst things people have said to you. How did it make you feel to hear such things? As always thanks for all the support and encouragement – it’s what keeps me going and making these videos.

Published by:

Why We Need to Tell Our ME Stories

Why We Need to Tell Our ME Stories...
ME is regarded as an invisible illness. My friends and family can take one look at me and know when I am having a particularly bad day, but the actual symptoms and severity cannot always be seen from the surface. One of the most important things you can do as an ME sufferer is to tell your story. So today I want to tell you why we need to tell our ME stories and to talk about some of the ways you can share your experiences.

On most social media sites, depending on the friends and groups you follow, you’ll often see meme’s doing the rounds which urge ill people to think positively. The whole positive thinking school of thought especially as it used to shame, bully and further isolate ill people is something I feel very strongly about and it is something I plan to talk about in detail at a later date. But for now, I mention these meme’s in relation to the way they encourage ill people not to talk about their experiences. Here are just 2 quotes:

“Never own a disease. Reduce the amount of time that you talk about being ill. Refuse to allow illness a place in your consciousness.”
“Refuse to be ill. Never tell people you are ill; never own it to yourself. Illness is one of those things which a man should resist on principle.”

I can tell you this type of advice (if it can even be called advice) is not at all helpful. I know because I did it for the longest time. Instead, it was only when I accepted I had an illness called ME, began to read other people’s experiences and eventually began to share my own experiences with sufferers and non-sufferers alike was I able to free myself and begin to rebuild a life. If every sufferer followed the advice to resist their illness and not own it, there would not be anyone campaigning for more research into the illness nor would there be any charity organisations helping to raise awareness and support the ill. All ME sufferers would be locked alone within their illness without blogs, social media friends or forums in which to connect with others and to take solace from the fact that there are others in this same, rickety old boat. We would truly be invisible and while that would be great for everyone else, not so much for us. Pretending we’re not ill or that we’re happy with our lot is not going to achieve anything.

When I first became ill it was a struggle to deal with the all the symptoms my usually healthy body was exhibiting. But I can tell you one thing for sure, as hard as it was to deal with the fatigue and pain, there were other things that were so much harder to come to terms with. No-one around me understood how I felt. I was so ill, but my friends and family couldn’t grasp exactly how ill I was. A lot of this was to do with the fact that I hadn’t come to terms with my illness myself, and I didn’t have the health or the energy to help others understand that which I did not understand myself.

Even when I did come to terms with the fact that my body was riddled with an illness, I had such a horrendous time dealing with changes such as the loss of work and the state of my finances, but even worse was the social isolation. I felt so alone and some days I even questioned my sanity; could I really feel so ill and yet no-one could see it? I received little to no help from the medical sector.

What saved me was a book I read called ‘Verity Red’s Diary’ by Maria Mann. As the name suggests the story is a diary. It is a fictionalised account but draws on the authors own experiences with ME. I suddenly realised that there were other sufferers out there and to this day I thank Maria Mann for writing that book. I read the stories of other ME sufferers online, I corresponded with them and suddenly I was not so alone and misunderstood. That was the turning point for me. I felt more comfortable about talking about my illness with other people in my life and suddenly they began to get it. OK, so not everyone got it, but because I felt so much more centred within myself, those people who judged or were plain mean didn’t affect me anymore. Over the next few years I began to feel more comfortable about writing articles online about my life as a ME sufferer. After I realised the importance of sharing our experiences, I began this blog. It was scary at first, but two and a half years on, the blog has helped me so much and I’d like to think others too.

So let me break it down, here are the 4 main reasons you must tell your story:

  1. It will help you to make sense of what you are going through. Naturally we shy away from anything that has the potential to hurt us, so it feels like talking about an illness will hurt us more. But one of the things I have learned by sharing my experiences with others is that as ill as I am, as hard as my life is, I achieve a lot and am stronger than I ever imagined possible. This is true for just about every ME sufferer I have ever come across and I am sure it is true about you too.
  2. You will help non-sufferers to understand the illness. This is an important one because if you have even moderate ME your life will change and it is important that the people around you understand this. If you never talk about being ill or how your illness affects you, how will the people closest to you understand? When you’re not well enough to attend that family christening, or can’t do your share of household chores, how will others react if they don’t know the extent of your illness? Or worse, you’ll push yourself to do more than you can and end up making yourself more ill.
  3. Your story may help someone else. At the very least you’re letting someone else know that there are others in the same boat. The way you have dealt with your illness could help some else deal with theirs; even if you think you’ve been struggling. Even those struggles can give another person solace. You’d be amazed at how often when I’ve been with a group of ME sufferers talking about our shared experiences, more often than not we laugh at the stupid treatments we’ve tried or the silly things people have said. It’s not about spreading the misery.
  4. Yesterday I wrote about how the Conservative government has been targeting the ill for welfare and NHS cuts. ME sufferers are at the top of the list of people who are declared ‘fit for work’ or denied medical help. We have to show the world that we are very ill, but receive little to no help. Our very survival depends on this.

So how can you tell your ME story?

  • One of the basic ways is to feel more comfortable in mentioning your illness to friends and family. You don’t need to talk about it constantly, but next time a loved one asks how you are, tell the truth. It can be something as simple as “I’m on new meds for my muscle spasms which aren’t fun, and it means I’m have to rest more than usual.”
  • Share a comment about your experience on an ME sufferer’s blog post, video upload or social media status. This is easier because a fellow sufferer will not only understand where you’re coming from but will often appreciate the support.
  • Write a blog post yourself about your story or a single experience. You can set up a blog for free. If this seems too daunting or you don’t feel you’ll have the energy to maintain a blog, ask another ME sufferer who has an existing blog to publish your story. I would be more than happy to publish anyone’s story on my blog. Here’s an example that I just saw this morning ‘MerelyExisting is ME’ wrote a lovely guest post called We Are Warriors .
  • Make a video. You don’t need expensive equipment to do this as just about every phone has a camera or voice recording function these days. Again, if you’re not comfortable being in front of the camera or don’t have a camera you can just record a voiceover or even just use text to convey your story. If you’re too ill to even do this, ask a family member to record you for 10 minutes when you’re feeling particularly ill and upload it to YouTube with a line or 2 about ME, or make a compilation of before and after becoming ill with ME pics. Here’s a video that Tom has made to raise awareness about ME. Tom is not a ME sufferer, but his sister is, and he will be running in the Edinburgh Marathon to raise money for ME research.

So if you are able to, please try and tell your story. If you don’t feel able to tell your story at this time, help other people share theirs by reading their posts or watching their videos and sharing these on social media sites or with friends and family. I understand it’s not easy because some days just sitting up is a struggle let alone telling your story online, but take your time and do what you can. If I can help you, let me know and I will try. You don’t know who you can help with just a few paragraphs; you may even save the life of someone who feels very alone. You can be serious and honest, or talk about some of the sillier things that have happened. Just be true to yourself; there’s no right or wrong way to do it.

Do you have any other ideas of how ME sufferers can share their stories? What have you learned from hearing other people’s stories? Let me know in the comments section.

Published by:

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:

Interview with Musician Nigel Harpur…

…On Music, Inspiration and Living with an ME Sufferer

Nigel HarpurIn Adventures with Nettie I wrote about a very good friend who is also an ME sufferer. Unfortunately, due to a health relapse, I haven’t had much contact with her for quite a while now. But several months ago her partner Nigel sent me a copy of his new album Collage and I was thrilled to learn that she had managed to contribute to a few of the songs. My nearest and dearest know I have no musical talent. I can appreciate music, but have no talent to create it so I have nothing but the utmost respect for talented musicians like Nettie and Nigel. But as an ME sufferer, I know how difficult it is to even get basic day to day tasks completed, so I find it amazing that Nettie was able to contribute in any way to Nigel’s amazing album.

Collage is comprised of ten instrumental songs composed and performed by Nigel Harpur. There’s a blend of soulful jazz to more upbeat numbers. It’s perfect for those times when you want music but ME brain fog won’t allow anything jarring or when lyrics are just too much to handle, and I have to say as someone who loves rainy days, the song ‘Watching the Rain’ could have been written as a theme tune to my rain-induced musings. However the faster songs, like ‘Seaside Rock’ are perfect for when I want to rock out (on the inside anyway). I was blown away by the range and feel there’s something for everyone on this album. I recently asked Nigel if he would allow me to interview him and here he talks about his musical background, album, future projects and living with an ME sufferer.

How long have you been playing music?

“I have almost dreamlike memories of ‘playing’ on my gran’s piano as a very small boy; they’d wind the seat up as high as it could go and then put some big old encyclopedias on it. Apparently the first time I just clambered up on my own and my parents worried that I’d irritate my gran, but after a few minutes she told them to leave me be. She had been a concert pianist and straight away could hear that I ‘had something’ as I didn’t just bash away randomly and treated her beloved old piano gently and with respect. At first I played the notes up and down the keys, then two at a time; deciding which combinations I liked best.

Later at around ten years of age my mum arranged for me to have cello lessons, with which I did persevere, despite the lugging around of the huge instrument on the bus and also the rather boring nursery rhyme style tunes they taught me. Also the focus on learning to read and write music seemed tedious and in hindsight I can see that my innate musical senses were already way ahead of my formal musical education.

Then I was given an old nylon strung acoustic guitar by a friend who’d never got on with learning to play it herself. Whoosh went the musical rocket ship and over the next three or four years I became something of a child prodigy, rarely without guitar in hand and would lose myself for hours, if not days, at a time as I absorbed everything my wonderful teacher John Hart could show me. Now I primarily play guitar, but also bass guitar, keyboards and drums.”

How long have you been in a relationship with an ME sufferer?

“I’ve been with Nettie for over 20 years and I guess she’s had ME for a lot of that time; as you know it is a bloody bugger of an illness but she has a fantastic sense of humour and is a fellow creative lunatic. Our house rings far more with laughter than tears.”

How did you meet Nettie?

ButterfliesMeanFiddler“From the age of 14 I was always in a band of one sort or another and in my late teens to early twenties had a serious bash at the jazz-rock-funk style of music which had by then completely swept me away. I was also involved in reggae bands, soul bands and a couple of jazz guitar duos.

Most magically for me, I formed an alternative music trio ‘The Butterflies’ with jazz trumpeter and pianist Tom Walton… and… the one and only Nettie! Performing her beautiful songs in London venues like ‘The Mean Fiddler’ was a real personal high point, as was the co-writing and production of the music. I had never before met anyone with such a wealth of creativity pouring out (continuously!) so I suppose it was only ever going to be a matter of time, what with her also being completely lovely, before we became a partnership in more ways than just musical. When she had to abandon her musical dream due to getting ME it was very hard for her, but of course she turned her creative attentions to writing books and the results were wonderful; we both know they have helped many people in many ways.”

Tell me how you came to create ‘Collage’

Collage by Nigel Harpur“When the other guitarist in the last duo I played in went back to live in America in early 2011, it seemed to me that the time was right to finally get my own album done. I had a bag of ideas, old and new, and due to the busy gigging schedule over the previous years in ‘Avocado Pair’ my guitar playing was very much in form. I also had the germ of an idea to incorporate a couple of instrumental versions of Nettie’s songs.

So ‘Collage’ is my first album and it took about two and a half years from recording the first bars of ‘Noggin’ to the release of the final mastered CD and digital files. It has been a long time coming, but that’s just the way things have panned out for me and I am really proud of it. You have to wear a lot of different hats when you do the whole process yourself; composer, performer, recording engineer and producer. Thankfully Nettie is amongst other things a talented artist, so the cover and artwork was left in very good hands; I think it all looks as beautiful as it sounds.”

What musical role did Nettie play on ‘Collage?’

“I wrote all the songs, apart from ‘Now That You’re Gone’ and ‘Watching The Rain’, from scratch and played all the instruments apart from the shakers on ‘Agitar Los Gránulos De Salsa’, which Nettie played. ‘Now That You’re Gone’ and ‘Watching The Rain’ were originally songs with the melodies and words written by Nettie and the instrumentation by me. In fact ‘Watching The Rain’ was the very first song we did together. I’d written a little guitar part that Nettie thought was rather beautiful, so she said, “Give me a tape of that and I’ll see what happens.” She came back with a haunting melody and lyrics that fit my music perfectly; something I found miraculous as the music was in the quite unusual time signature of 10/8!

Although it was really pleasing to get two of Nettie’s songs arranged as instrumentals on the album, I did feel sad that her lyrics weren’t going to be heard. She became too ill with ME to ever finish the vocal recordings you see (it takes far more energy than people generally realise) so I’ve put ‘Now That You’re Gone’ to video, with the lyrics as subtitles, and plan to do similar with ‘Watching The Rain’. YouTube is a wonderful thing!”

This may be an unfair question, but do you have a favourite song on the album?

PaddyNige“Yes, that definitely is an unfair question as every song has special meaning whether it is due to what inspired the song, or the actual composing and performance of the piece. But if I had to choose, my favourites of my own compositions on ‘Collage’ are probably ‘Agitar Los Gránulos De Salsa’ which is a very upbeat tune with a Latin feel and ‘Pad Pod’ which was inspired by fond memories of my great ginger tom cat Paddy, possibly the best friend I have ever had.”

You mentioned inspiration: what inspires you as a musician, both in terms of other musicians and anything in general?

“Well, I’ve been into a very wide variety of music (over a lot of time!) so all I can do is mention some of the landmark discoveries that have really knocked me out along the way. Even as a very young boy I could tell the difference between The Beatles and most of their contemporaries, it seems a cliché to reiterate it, but they were something else. Then the great acoustic music of Bert Jansch and John Renbourn, taught to me by John Hart, really opened up the guitar for me. My very first inspiration to play an electric guitar was the legendary Elmore James and his hatful of beautiful songs like ‘The Sky Is Cryin’’ and ‘I Believe’. Then I found Frank Zappa… that was a game changer, as they say! In amongst all of that guitar stuff though, there were so many inspirational ‘non guitar’ artists, like Kate Bush (a true genius) and a host of others, far too many to list here. Of course throughout it all there has always been my beloved Bach and Brahms, and aside from Nettie, my lovely animals and the natural world, the inspiration just bubbles up from where I do not know… but it won’t seem to stop.”

Do you have any plans for another album?

“I have started work on the next album and I’m looking forward to producing it. I already have a rough idea of how it will sound. I’m not letting on exactly how it’s going to be to anyone yet though, I’ve learnt my lesson over the years; as soon as you start ‘boxing something up’ before it’s finished you unwittingly cut off artistic paths that you might have otherwise travelled.

I also have a germ of an idea to go out gigging as a duo with an old keyboard playing friend. Hopefully we’ll play a mixture of some of my tunes from ‘Collage’ and a selection of jazzy standards that we both like.”

You can find out more about the album at Orchard Music and read more reviews of ‘Collage’ HERE.

Images: © Nigel Harpur – all rights reserved and are used here with permission.

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.

Cost

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.

Physiotherapy

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.

Homeopathy

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.

Reflexology

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.

Ginger

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:

BE SAFE FOLKS – WHAT WORKS FOR ONE PERSON MAY NOT WORK FOR ANOTHER. PLEASE SPEAK TO YOUR DOCTOR BEFORE DECIDING AGAINST ANY TREATMENT BASED ON MY OPINIONS HERE.

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:

First Post of 2015

Plans for a New Year

Today I was tempted to just post a piece I had written last week which I didn’t get around to uploading. Yes, I was very tempted, but I didn’t want my first post of the new year to be a leftover from last year. You will be seeing that one tomorrow (c’mon, I’m not going to waste it?!). I hope everyone has had a good start to 2015, but I know that if you’re anything like me, you’re probably struggling after all the over-exertion of the last few weeks. I am so ill at the moment, I can barely see straight, but I can’t say I regret a single minute of all the activity, talking and laughing that has left me totally wrecked. Of course, the longer I’m left feeling this way, the more that feeling of contentment will wane, but for now, I’m good.

I’ve been thinking a lot about what I want to do in 2015. I don’t really make resolutions, but I do assess where I’ve been, what I’m doing right now and where I want to be. I started The ME/CFS Ghost in the hopes of sharing what my life with ME is like. That means writing about how I feel, what I do; the good, the bad and the ugly. So, I’m going to be sticking to that, but I’m sure you’ll see more of a militant side to me because that’s honestly how I’ve been feeling. I’m not angry, I actually feel great inside, but I am much more confident in what I know and passionate about sharing that with others. I’m also in the process of writing a book about living with a chronic illness. I began planning it a while ago, but I haven’t had the time, health or energy to really work on it.

Going forward, I’ll still be attempting to post every week day, health allowing of course. Tomorrow you’ll see the post which is almost a part two of the mini rant I had in The Fault in Our Stars. On Wednesday I’m hoping to talk about ME adrenaline surges, because that’s what landed me in my current mess, but it all depends on if I can get my brain to engage. Thank you all for joining me in 2015, let’s make it the best one that we can.

In the past I’ve talked about how I have certain songs that get me through the day. Today’s song is Lynyrd Skynyrd’s Free Bird – guitar solo all the way! Enjoy and I’ll see you tomorrow!

Published by: