Category Archives: Personal Blog

30 Things About My Invisible Illness

We all experience our illnesses individually and we have our own challenges and achievements. But I do find that when we start to share our experiences and stories, we begin to see that we’re not all that different from each other. This often gives us some much needed solidarity and comfort. I haven’t really talked specifically about my own story, and I will expand on this at some point, but I had been planning to complete the ’30 Things About My Invisible Illness You May Not Know’ questionnaire by Invisible Illness Week for quite some time now.

So, after a really awful start to 2016, I wasn’t in the mood to tackle a big topic for this week’s video. Instead I decided I would finally complete the questionnaire. I actually really enjoyed doing it because it helped me to understand how far I had come in the years since I first became ill. I would urge others to also complete this questionnaire. You don’t have to do it in a video format like I did, but instead you can write out your answers and post them on your blog. If you do that, please drop a link in the comments section so we can all check it out. If you don’t have somewhere to post your answers, I’m happy to post them on this site or there is another option on Invisible Illness week.

Here’s the video – if you want to subscribe to the channel, either click on ‘YouTube’ in the bottom right hand corner of the video and it will take you to YouTube where you can subscribe, or click this link and it will take you to my YouTube channel where you can also view the other videos I have made. Thank you so much for all the support and comments.

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What Do You Want in 2016?

The months seem to have rushed by since August. In almost a decade and a half of chronic illness I’ve found that even though each day will often seem to crawl by, with me crawling right behind it, the weeks, months and years tend to fly. Luckily (or is that unluckily? I have yet to figure that out) I have been extremely busy since August and so much, too much even, has been happening in my life. One thing hasn’t changed though; I still seem to be crawling behind. As I’ve not been around much I just wanted to let you know what is happening, and what you can expect. Also, I want to know what you want to read and see from me! Are there any topics you would like me to cover? Maybe there’s an issue that needs explaining, or perhaps you’d just like me to vent about something that probably bugs a lot of us, or there might even be something wonderful that you’ve found for which you are grateful. Let me know and I will do my best to cover that topic.

So where have I been and what have I been doing? I had some major changes take place in my life over summer and I’ve been adjusting to these. I was prepared for anything to happen. I didn’t want to feel stressed out about any problems that could arise nor did I want to create issues where there weren’t any, so I took on an attitude of “Just let it come; whatever happens now, I will deal with it.” I am thrilled to report that health has actually been better than it has been for a while and I’ve been happy. I think a major reason for this is that even though I had an initial panic to get moving and to do something…anything even, I actually slowed right down and gave myself the time and space to get my bearings and to make sure I was OK. I looked after myself in a way I probably hadn’t for a very long time.

I’ve loved relating to myself as an individual again. I’ve always been very independent, but I guess when you’re in a relationship and especially when you’re living with someone, you inevitably will define yourself in the terms of that relationship. There’s nothing wrong with that. But sometimes it is nice to just get to know who we are and where we are in the whole scheme of things and I have definitely been doing that.

Ah, the YouTube channel. Yes, I know I put up one video and then disappeared. This was precisely what I did not want to do. I had been so organised and prepared to create videos in advance so no matter what happened with my health, there would definitely be a video out each week. Well it would appear that life had other plans for me! First I was without internet and then I had an awful chest infection. I also have had much upheaval and change. So by the time I was ready to begin uploading again, the Holiday madness had begun. I decided I would keep working on the videos and start posting them in the New Year and that is exactly what I will do. I created a short channel update video explain this:

THANK YOU FOR ALL THE LOVE AND SUPPORT!

The videos really do take up a lot of time and effort BUT they are worth it because of the response I have had from other sufferers. The way things are in my life at the moment I have to juggle a lot of balls just to survive and my life is far from certain. But one thing is certain, I will continue to make these videos for as long as possible and furthermore, I look forward to your suggestions and requests on the types of topics you would like me to cover.

Happy New Year!!

OK that’s all for now my lovelies! We survived 2015, now let’s go deal with 2016! We can do it together and even from the sanctuary of our beds.

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“If Only I Didn’t Have ME…”

When life throws you a curve ball, it's so easy to get stuck in the "if only I didn't have ME" cycle.
A few weeks ago my life took a crazy turn when the guy I was living with effectively ended things and asked me to move out. It took me a week or so to get packed up and moved out and I left last week on 26th August. This is a meaningful date for me anyway as it is my ME-versary. This 14th anniversary of the day I became ill was definitely my darkest and there were a number of things I wanted to write about a week ago, but I really was just so emotionally and physically spent, it’s taken me this long to be able to put together some thoughts. In my day to day life, I rarely think about being ill; it’s just the way things are and I get on with my daily activities (or inactivity as is sometimes the case) as best as I can, limited health and all. But it has been so difficult not to get caught in the spiral of “if only I didn’t have ME” these past few weeks.

Back in 2009 when I met the person I had been living with, I was relatively healthy and active, as I was experiencing a brief respite in the severity of my symptoms. But in 2011 I experienced a major relapse and while I have not become as ill as I was prior to 2009, I haven’t exactly been a social butterfly either. So when he cited my illness as one of the reasons he wanted to end things, I honestly could not blame him. He is turning 40 soon and is dealing with his own mid-life crisis. He wants to be more active and to do things that I guess remind him that he’s not old and past it. Having a ME ghost haunting the house can severely cramp one’s style, and I have really been very ill this past year.

Then there’s the issue of what I do now and where I’ll live as I am effectively penniless and homeless. I could move back into my parents’ house, but everything in me is against doing that. It seems like too much of a regression; I am no longer the same person I was when I lived there before. But the fact remains that this illness does severely limit the work that I do. While I work full-time hours on my writing and blogging, I am not financially solvent and so cannot support myself fully. I have to admit that this has been the cause of the biggest upset for me. There were some very dark hours when all I could think was that I will turn 40 in January and yet I have nothing. I have spent the last 14 years hampered by this illness and those were meant to be the years I created and formed my life.

However, it’s not all doom and gloom. As ME sufferers, we are all too familiar with how many relationships (friends and even family members) fall by the wayside the more ill we become and are less able to interact with others. But I have been very lucky and I have people in my life who are here with me. My mum has been amazing, both in supporting me emotionally and in almost single-handedly helping me to move my belongings out. Then there is my best friend Ami. I’ve known her since we were in nursery school together. She came and got me on that last day and I have been at her house for this past week. This is despite some pretty major things going on in her life at this time too. There are other people too; my sisters and a cousin who have been offering me help in every way possible. So while I may not have much in the way of possessions, I have love and support. It is so much more than I could ever hope for.

I’ve been nursing my wounds and getting my bearings, but I will need to formulate a plan soon. For the time being I am a vagabond and totally dependent on the goodwill of my friends and family. The self-recriminations could come so easily at this time. If I was strong and healthy, perhaps I would be in a much better situation, but perhaps not. After all there are so many people in the country who, for one reason and another, are in the same boat as me. A quick glance at the news shows people who are in even worse situations than what I am in. So while I could easily be swept away in an ocean of depression and self-pity, instead I choose to be grateful for the angels in my life at this time and to look to the future. I do have one; I just need to decide what I want to do with it.

Before I wrap this up I just want to explain the image that I used for the quote. I took that when I was on one of my walks. I was so grateful that day to be able to walk, to just be alive and to be living in such a wonderful part of a city that I love. I may no longer be there, but I am grateful nonetheless.

Do you ever have “If only I didn’t have ME” moments? What gets you through those dark times?

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Feeling Ill in Summer

Feeling Really Ill in the Summer
This week summer hits London full force and while just about everyone I know is excited and looking forward to revelling in the sunshine, I have entered full scale survivalist mode. I’ve written about reverse SAD or the summer blues before, so it won’t come as a complete surprise that I don’t look forward to the summer months. However I’m currently in the middle of a relapse so I have to be really careful in the heat as it could have serious health consequences for me. I have some friends with ME who thrive during summer. This is the time of the year that they feel the best and I even have one friend who spends time abroad during winter just so her health is not adversely affected by the cold. But what about the rest of us who relapse every summer? Here I talk about how the heat and light affect me and what I do to survive.

Summer Sickness

This weekend I had to go across the road to the supermarket and pharmacy. I will be alone for the next week so can’t rely on anyone to pick up food items for me on the way home and even if a heatwave had not been forecast for the coming week, I would make sure I had everything I needed just in case I’m unable to get out. I decided I would go very early o+n Saturday morning when it would be cool and I could avoid the heat and the crowds. The trip went well and I got everything I needed. However, just after lunch I was hit with the most overwhelming fatigue. I had to lie down. I spent the rest of the day passed out in bed, barely able to get up and eat dinner. Sunday was pretty much the same. I find it impossible being out in the sun for very long. This weekend was extreme because I don’t usually get knocked out like that, especially when it is not even that hot, but here are some of the symptoms I experience after as little as 10 minutes out on an average summer day:

  • Light Sensitivity or Photophobia: Light has been an issue for me anyway, so I’ve gotten used to wearing sunglasses since I became ill in 2001. But when I’m out in the sun, brightness can be too much even with shades on. I bought a pair that is very dark and wide, so not much light gets in around the sides. However, I fear I need wraparounds.
  • Heat Intolerance: I am not good with heat. I do not even use any heating in my home during winter and find it very difficult to visit friends and family during the colder months as their homes are way too hot. So, venturing out on a summer day is a nightmare. I feel consumed by fire and my skin itches and burns. There are also a number of other symptoms which I think are related to the heat intolerance and I’ll talk about them next.
  • Dizziness and Headaches: The dizziness comes on very quickly when I’m out in the sun and I find myself feeling extremely light-headed. Even a short time in the bright light and heat causes headaches for the rest of the day.
  • Fatigue: The summer months are when my fatigue is the worst. Even if I don’t go out, the raised temperatures make me feel sluggish and weak. Everything seems harder and takes more effort and energy. I keep my flat very cool, but I feel the most comfortable in the cold.
  • Nausea and Vomiting: Nausea is a real problem in summer. Sometimes, no matter what I eat, I throw up too, but luckily (if that word can be used for anything to do with illness) it doesn’t happen too often.
  • Dehydration: This may be due to the medicines I am taking, but I find no matter how much water I drink, and I do drink a lot of water, I still feel dehydrated. I’ve had diabetes checks, but I am not diabetic, nor do I have any other health issues that could be causing the thirst. I recently went to see a dental hygienist and even she commented on the dryness of my mouth.

The Sun is Good For You, Right?

No matter how ill I get in summer, I still get friends and family telling me that I need to get out in the sun. My own mother, who has seen me suffering in the heat and light, often tells me I need to move out of my basement flat to a place that has more light. After almost a decade and a half with this illness, I know what makes me worse and what makes me better. I get tired of hearing how I need more sun, more light and more heat. However, if ME has taught me anything, it is the patience to endure the unhelpful and totally unfounded recommendations of well-meaning people.

How to Survive the Summer

I try to stay cool and out of the light. I also know that it takes me a lot more effort to get the same amount done during the cooler months, so I have to be extra careful not to over-exert myself. Well, that is all I have been doing the past few years. But it is not good enough as I am forced to leave the house and it is not always easy to escape the heat.

I have recently been doing a lot of reading on adrenal fatigue and mitochondrial function. I read that many people have found that water alone is not good enough and can actual cause more problems and what is needed is electrolyte replenishment.

Do you have increased health problems in summer? What do you do to survive feeling ill in summer?

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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.

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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.

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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.

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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.

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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.

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Last Post of 2014

The last post of 2014

I had a different post written for today, however I wanted my last post of 2014 to be something different. The end of the year usually results in us feeling anticipation and hope for the coming year. I also always find myself reflecting on the twelve months that have just passed by. It’s been quite a ride, but then again, I feel like I say that every year. 2014 was very difficult in a lot of respects, as I had to deal with increasingly bad health, as did many of those I love. I began the year making plans to move into a home with much needed more space, but that did not transpire. Even while dealing with my own physical limitations, I attempted to expand my writing and to take on more and more work. Then in September I lost my furry saviour Masti, even though he was only nine years old, which is not very old for a German Shepherd. Losing him has been a blow of epic proportions and even though he is not the first dog I have lost, I still find myself dealing with the sadness of him not being here anymore.

It has undoubtedly been a year of more lows than highs, and yet I still find myself thinking 2014 was a good one. Nope, I didn’t turn into some masochist, pain and sorrow loving crazy person. I feel like I’ve found a stability and serenity inside that was not there in previous years. I’ve stopped questioning the ‘whys’ of everything and instead find myself looking for solutions. When one thing after another seems to go wrong, it can be so easy to get stuck in the “Why me?” or “I can’t deal with this!” zones. Maybe it’s just getting older or perhaps it’s when you’ve had so much shit thrown at you, you reach a point where no more can stick. I don’t know, all I know is that I find myself dealing with everything better and just feeling happier and better within myself.

I’m also so much more grateful for the good things and great people in my life. What this means is that for the first time ever I have real hope for the coming year. Not the kind where I’m wishing that things will go my way, because let’s face it, that’s not likely to happen. Instead I feel the real, solid variety of hope, where I feel confident that no matter what happens at the very least I can deal with it and at the most, I’ll be able to find a positive (you know I hate that word, and I’m not talking about silver linings here) and take advantage of the situation. I’ve stopped fighting myself I guess and so my fervent desire for 2015 is to continue to stay out of my own way.

Tomorrow a new year starts and I can tell you one thing, I am rearing to get going! But I will tell you more about those plans next time.

Until then, I wish you strength, happiness and peace in 2015! Stay warm, stay safe and I hope you have a fabulous last night of 2014.

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