Ever since I started to make these videos I planned on talking about this awful thing we call positive thinking. Finally I managed to not just make one video on the topic, but two. Of all the responses and comments the chronically ill get, “Be positive” has to be the one that annoys me the most! You see, I used to be a fundamentalist positive thinker – I know the mind-set and even though at the time I believed every stupid word that came out of my mouth, I now know the damage I did to myself and to others. As far as I can tell, being a positive thinker didn’t really do anything for me and it certainly didn’t prevent me from getting ill.
In the first video I look at what positive thinking should be and what it has become in our modern society. I also take a general look at why it is so flawed and is really the worst possible way we can choose to govern our emotions.
In the second video I look at the results of several studies which not only show how bad positive thinking is for us, but also the benefits of negative thinking.
Included here are the studies I quoted in the second video.
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.
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.
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.
This is a follow up to the poll that I posted a while back. If you haven’t already seen it and answered the questions then I would really urge you to do so by visiting Over-the-Counter ME Treatments Poll. Even if you have already taken the poll, you can go back and view the results of what other people said.
I know a lot of you have been wondering how I came up with that list of treatments. A friend who is also an ME sufferer sent me the above list as her friend, another ME sufferer, was given that list of OTC treatment options by an ME specialist at Sutton hospital. My friend and I were pretty appalled by the list. Yes, there are treatments listed on there that people may find helpful, but it’s still shocking that you’re referred to a specialist and they give you something like that. You can join any ME forum and get a similar list in just a few minutes and not have to wait to see a specialist. I must admit, that I don’t know the full treatment plan that the lady who is attending the hospital is receiving, so it’s not really fair for me to make assumptions about the medical treatment being offered to her. So I’ll stick to that one sheet of paper.
My first objection may sound really petty, especially considering the name of this blog, but ‘CFS/ME’ seemed a bit unnecessary, when ‘ME/CFS’ is most commonly used. It’s like the ME is just grudgingly tagged on to the end of CFS. Especially as further down the sheet, only ‘CFS’ is used to refer to the illness.
I have my own thoughts about the treatments suggested but these are based on my own experiments. Going by the answers people gave to my poll, the majority of the people that answered had similar results as me, but some people evidently found some help and relief where I didn’t.
The one treatment that I was really interested to try especially as I have problems with sleep disturbances in summer is Phenergan, but after going through the entire list with my pharmacist I was told that it is only available with a prescription.
So, what do you think, both about the treatments that are suggested and the fact that this sheet is being given to patients. Do you think it is a good basic guide for ME patients? The lady who was given this sheet had already tried most of them as she has been ill for well over a decade. Do you think it would make a difference to those that are newly diagnosed or is it helpful for all patients? Are there any Over-the-Counter ME Treatments that you would really recommend or dissuade people from trying?
As always, I am not doctor and these are just my own opinions, so please speak to your doctor before trying/not trying any of these.
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?
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.
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?
Most ME sufferers will try just about anything to help with their symptoms. But are all treatments effective? What follows is a specific list of over-the-counter ME treatments and readily available therapies. Please note I am NOT recommending any of these or suggesting that any are suitable for the treatment of ME. The point of this poll is to see who has used what or would consider using them and how effective users have found these to be. I don’t want to say too much about where I got this list from or who compiled it at this point, as I don’t want to influence any answers. I promise that I will be back with more information at a later date.
It is a very straight forward poll and will only take a few minutes to complete. It is made up of two questions per treatment/therapy. The first of these asks if you have or would consider using the treatment and the second is only to be answered by those that have used the treatment. Don’t forget to hit ‘Vote’ after each question, (this also means you can answer as many questions as you are able to at any one sitting.) You can also view the results up until that point immediately after you have added your answer.
Thank you for taking part in this poll. As promised, I will be back with more details about why I asked these questions. I’m sorry for being so deliberately vague, but I really want to get a more representative viewpoint before I go ahead and reveal more. You may be surprised by where I got this list from and who has compiled it, so be sure to check back.
In the meantime, please feel free to share any further thoughts about these or other over-the-counter treatments in the comments section.
Or a situation handled poorly by mother and flight attendant?
A few days ago I saw a video of a family being escorted off a plane by police. The title of the video was ”Fear of Autism” Family Removed from United Airlines Flight. I really felt for the family; it can’t have been nice to be asked to leave and then to have other passengers filming the scene. This is the original video that I watched:
I wanted to know what had happened. Why would people have been scared of an autistic child? So I found this news report with an interview with the mother, Dr Deborah Beegle. She explains that there was an issue with the flight providing a hot meal, which is what Juliette, her daughter needed. After much discussion with the flight crew about purchasing a hot meal from first class, she eventually managed to get one and her daughter was fine after that. But, the flight made an unscheduled stop and the family was asked to leave the flight. I could really feel for the mother and understand her frustration at what she feels is discrimination against her child, however as I was watching the interview, there is a statement that the mother makes which made me think what she said to the flight attendant may have been more of an issue than her child’s autism. Take a look at the video and see what you think, the statement is at around 02:14.
I am an ME sufferer and so I can totally relate to how damaging and hurtful the ignorance of society can be to people with illnesses that are so misunderstood. We get called lazy, like we have a choice not to be so debilitated, and in the same way these poor autistic children get called spoilt brats when they have no choice in the way that they react and respond to situations. I have people within my extended family who are autistic and my sister has also worked extensively with autistic children and their families. These kids are not playing up, but rather some like Juliette, cannot verbalise agitation from hunger and they have specific dietary requirements. I looked through the comments section of online news articles about this incident and I was pretty disgusted by some of the awful comments made about the child and about how she is just a spoilt brat. I totally disagree with those kinds of statements.
However, having said all that, I also don’t think the issue here is the child but rather her mother and the flight attendant. Before everyone jumps down my throat for being unkind, I would like to explain why I think this. The mother has posted her own account of the incident on Facebook and I’m basing the following opinions on her statement.
The Mother’s Mistake
I am an adult with more than one chronic illness and I have special dietary requirements. More embarrassingly, I can also have urgent toilet needs and I need to eat at specific times. Any trip that I make, and I mean any, from a short trip to another part of the city to longer car journeys and flights, has to be carefully planned. The outbound flights are usually easier because I have everything I need at home, so it is easy enough to pack up a meal or two. The inbound flights are much harder because it may not be so easy to get everything that is needed. The Beegle family was on their way back from a Disney vacation, so I can understand it may not have been so easy for them to have everything that Juliette needed. Juliette cannot make the kinds of decisions and choices that I can, but her mother who is responsible for her care sure can. This is what she had to say:
“ My family were on our way home from Disney World. I asked the flight attendant if she had any hot food (Juliette will not eat cold food and had refused her dinner prior to the flight). We had a back pack of snacks but she did not want what we had. The attendant sold me chicken sandwich but it was not hot and Juliette would not eat. The flight attendant said that is all we have. I asked if there was some hot food in First Class. It was a very long flight and I wanted her to get something in her system. The flight attendant went to ask and a male flight attendant in First Class. He came back to tell me that they could not serve the hot food from First Class because we were in economy. I offered to buy the rice they had. He said no. For 40 minutes, I kept trying to think of something that they had that she would eat. He told me no every time. I finally, told him that I am platinum on United thinking he might help. He said No. I again asked if he could make an exception for our daughter who faces autism. He said, no he could not give her the rice from first class. I asked if I could get some chips or something salty for her. He said they had no chips. Juliette was beginning to cry. Frustrated I said, after she has a melt down and tries to scratch in frustration, will you help her then? He said he would see what he could do. He came back scowled at me and gave her a hot meal. I thanked him and offered to pay for it. He did not answer and went back to First Class. i>
I understand that it can’t be easy to always predict how Juliette will react or what she will need, but the mother says herself that her daughter had refused dinner prior to the flight. Surely at that point she would have known that at some point during the flight her daughter was going to feel hungry and would probably need something hot. Also, she has a back pack full of snacks, but not a bag of chips? I swear to you I am not trying to pick on the mother, but I do feel she needs to take some responsibility for not being better prepared. But hey, she’s human, and it happens, especially when you’re rushing about taking care of a child and trying to catch a flight, so she was unable to buy something that she could have asked the cabin crew to warm up for her. Also, I think she was getting frustrated with the lack of assistance from the flight attendant, and that is understandable too as I do think he could have done more to resolve the issue, so I believe she chose the wrong words when she said “after she has a melt down and tries to scratch in frustration, will you help her then?”. Now she probably meant that her daughter would scratch herself rather than scratch anyone around her, but what Dr Beegle effectively did with this statement is let the flight attendant know that her daughter could get violent if she does not get what she needs. The flight attendant may know zero about autism, but he has to trust that this mother knows her daughter.
United Airlines Flight Crew
You have got to believe that there has to have been a better way for the cabin crew to have dealt with this situation. Cabin crew are like people in any line of work; you’ll get some that are helpful and just brilliant at their jobs and others that have become jaded and annoyed with the troublesome customers/passengers. I have needed help with wheelchairs and walking aids due to my limited mobility and in the same trip I was brought to tears by the kindness of cabin crew members as well as the complete callous lack of care I received in the same trip. We don’t know the flight attendant’s side of the encounter as he hasn’t written a Facebook post as far as I can tell. But there has to have been a better way for him to have dealt with the mother of an autistic child. You get the impression (from her statement admittedly) that her request for a first class meal is what got his back up. The pilot’s decision to make the unscheduled stop and offload the family has to have been based on the flight attendant’s account of the incident. Also, the mother says Juliette ate and was watching Pocahontas when we heard the flight attendant say, “We will be making an unexpected landing in Salt Lake due to a passenger in the back having issues.” We were in the front of the plane and wondering what was going on. The plane landed and the flight attendant asked if there was a medical doctor on board. A man came forward two rows in front of us. The man there said, “I am fine. I do not need a doctor.” The door opened and two paramedics came to the man two rows ahead of us. He said again said he was fine. The paramedics left him and came to my row and said, “Everything okay here?” Confused, I said, “yes.” The paramedic asked if Juliette was okay. I said, “she’s fine.” Did she scratch someone? Puzzled I said, “no.” So did someone else need a doctor on the flight? Had there been a report that a passenger had been scratched?
The Need for More Awareness
I agree with Deborah Beegle; there does need to be more awareness among flight attendants on how to deal with families that have members who have special medical requirements. In A Letter to JetBlue From the Mom of a Child With Autism a mother is so grateful for the help and attention they received during a flight. United Airlines may want to pay attention. Someone reading this may wonder why I went to so much effort to point fingers at a mother doing her best to care for her autistic child and a flight attendant. I assure you, that is not my intention. Rather, I feel that while it is important to raise awareness about illnesses and conditions that are so misunderstood and that affect a substantial number of people, cases like this can actual bring negative attention to the cause. The mother may have ten pages of statements saying Juliette was not a threat to anyone, but any lawsuit she brings about may show that it was her own behaviour in the situation that escalated the problem rather than anything her daughter did. When you make the whole thing about autism, rather than about some really bad communication between a passenger and a flight attendant, it may draw at people’s heart strings, but it is not accurate and you actually risk further discrimination and misunderstanding. A quick look at the comments left on reports of this case, even though the press has largely been sympathetic to the mother, illustrates my point, especially in the comments from other parents of autistic children who do not agree with Deborah Beegle’s actions. In fact there are wars being fought in the comments sections of various sites that have reported this story with people disapproving of the mother’s actions and others accusing them of being heartless. Many said they would never fly with United Airlines, while others said they would definitely fly with United now as they take security so seriously.
So what do you think? Whatever your views, please be nice and understand the viewpoints of others.
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:
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.
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.
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.
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.