The ME/CFS Ghost » Blog Archives

Tag Archives: me/cfs

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

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

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

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

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

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

Published by:

Over-the-Counter ME Treatments Follow Up

OTC Treatment Options for Patients with ME
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.

Published by:

Over-the-Counter ME Treatments Poll

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.

Have you used L-Carnitine for Muscle Function?

View Results

Loading ... Loading ...

If you have used L-Carnitine, did it help with your Muscle Function?

View Results

Loading ... Loading ...

Have you used D-Ribose for Muscle Function?

View Results

Loading ... Loading ...

If you have used D-Ribose, did it help with your Muscle Function?

View Results

Loading ... Loading ...

Have you used Coenzyme Q10 for Muscle Function?

View Results

Loading ... Loading ...

If you have used Coenzyme Q10, did it help with your Muscle Function?

View Results

Loading ... Loading ...

Have you used Magnesium for Muscle Function?

View Results

Loading ... Loading ...

If you have used Magnesium, did it help with your Muscle Function?

View Results

Loading ... Loading ...

Have you used Echinacea to aid Immune Function?

View Results

Loading ... Loading ...

If you have used Echinacea, did it help with your Immune Function?

View Results

Loading ... Loading ...

Have you used Ginseng to aid Immune Function?

View Results

Loading ... Loading ...

If you have used Ginseng, did it help with your Immune Function?

View Results

Loading ... Loading ...

Have you used Sublingual Vitamin B12 to aid Immune Function? (Not injections prescribed by your doctor.)

View Results

Loading ... Loading ...

If you have used Sublingual Vitamin B12, did it help with your Immune Function?

View Results

Loading ... Loading ...

Have you used Phenergan to aid with Sleep Disturbances?

View Results

Loading ... Loading ...

If you have used Phenergan, did it help with Sleep Disturbances?

View Results

Loading ... Loading ...

Have you used Melatonin to aid with Sleep Disturbances?

View Results

Loading ... Loading ...

If you have used Melatonin, did it help with Sleep Disturbances?

View Results

Loading ... Loading ...

Have you used N-acetylcysteine?

View Results

Loading ... Loading ...

If you have used N-acetylcysteine, did it help?

View Results

Loading ... Loading ...

Have you used Tocotrienol?

View Results

Loading ... Loading ...

If you have used Tocotrienol, did it help?

View Results

Loading ... Loading ...

Have you used Mindfulness Meditation to aid with Deep Relaxation and/or Pain Management?

View Results

Loading ... Loading ...

If you have used Mindfulness Meditation, did it help?

View Results

Loading ... Loading ...

Have you used Abdominal Breathing to aid with Relaxation and Pain Management?

View Results

Loading ... Loading ...

If you have used Abdominal Breathing, did it help?

View Results

Loading ... Loading ...

Have you used Graded Exercise Therapy?

View Results

Loading ... Loading ...

If you have used Graded Exercise Therapy, did it help?

View Results

Loading ... Loading ...

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.

Published by:

Inside an ME Relapse

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

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

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

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

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

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

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

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

Original Image Credit and Terms of Use

Published by:

Coeliac Disease, ME and me

Coeliac Disease and ME

Recently I started seeing a new doctor and she wanted to test me for Coeliac Disease in relation to the plethora of symptoms which have been worse lately. This is not the first time a doctor has brought up CD. Back in 2003 when I was in the middle of my journey to get a diagnosis for the bizarre illness that had taken over my life, I was tested for Coeliac Disease. The first part of the test was (and still is) a blood test and then a biopsy of the small intestine. My blood test came back as positive so I also had a gastroscopy and endoscopy; at that time I had so many digestive symptoms and in fact my ME symptoms were triggered by a viral infection. The biopsy showed inflammation but I did not test positive for Coeliac Disease. At that time I was not very medical savvy, meaning, I had complete trust in the doctors and did little to no research myself. It was not until many years later that I realised the tests I had in 2003 were useless because the doctor who had suggested Coeliac Disease had also suggested I go on a gluten free diet. So I had been gluten free for several months when I took the tests.

What is Coeliac Disease?

Before I go back to my CD journey, I just want to take a moment and briefly explain what Coeliac Disease is. Coeliac UK states that possible symptoms may include:

  • severe or occasional diarrhoea, excessive wind and/or constipation
  • persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting
  • recurrent stomach pain, cramping or bloating
  • any combination of iron, vitamin B12 or folic acid deficiency
  • anaemia
  • tiredness and/or headaches
  • sudden or unexpected weight loss (but not in all cases)
  • mouth ulcers
  • hair loss (alopecia)
  • skin rash (dermatitis herpetiformis)
  • tooth enamel problems
  • depression
  • infertility
  • liver abnormalities
  • repeated miscarriages
  • joint and/or bone pain
  • neurological (nerve) problems such as ataxia (poor muscle coordination) and neuropathy (numbness and tingling in the hands and feet)
  • amenorrhoea (lack of periods in women)

I’ve experienced all but a few of these symptoms for many years now. What causes them for people that have Coeliac Disease is a protein called gluten which is found in grains such as wheat, rye and barley. Coeliac Disease is not an allergic reaction, but an autoimmune condition, so gluten causes the immune system to attack healthy tissue, and damage is caused to the small intestine.

Coeliac Disease and ME

If you have been diagnosed with ME, you will notice that many of the symptoms on that list are commonly found with ME sufferers too. I think that too many ME sufferers just have every new symptom that comes up brushed off as being ME related, but just because you have one illness does not mean you cannot have another. In fact, from what I’ve been reading online, there are many people that believe there is a relation between ME and CD. I have also seen that some people have fought so hard to come to terms with ME and to have this illness recognised by friends and family, they themselves are unwilling to add another illness to the list. This may be because it just seems like too much work or because they believe it is an either/or situation; they either have ME or they have CD. I don’t believe it is an either/or situation. Of course, in some cases it may be, but I know for me it is not. I went gluten free back in 2003, and it really helped some of my symptoms, but my ME symptoms continued. In fact my health continued to worsen for the next few years, although I was back on gluten by 2005. I will be writing a separate post at a later date about the gluten-free side of things, but for now I just want to say that I am more than happy to investigate Coeliac.

As ME sufferers, our bodies are under so much stress and we go through so much. It is actually good news when some of the symptoms can be explained by some other illness, especially when there is a treatment for it. I will gladly put out the fires that I can, and hopefully that will also help the ME side of things.

Coeliac Disease and me

A few weeks ago I agreed to have the blood work to test for CD. But for days afterwards I was so anxious. When I feel that way, I try to follow the thread of my emotions and look at what is causing the anxiety. I realised it was the idea of having to go through the gastroscopy again. In fact I even told my doctor that I was extremely traumatised by the last time I had one and she said she could not promise I would not have to have one again. My fear of the procedure stems from a bad experience with a dentist many years ago and that is what caused me to write the post Fear of Dentists.

I thought about what I wanted to do and decided I would no way go through with the gastroscopy, but I would instead just go on a gluten free diet. I wish I had stayed gluten free when I tried it a decade ago, but in 2005 I had to go away to try alternative treatments and it was not possible to eat a diet free from gluten. I know eliminating gluten before has helped with the gastro-symptoms at the very least, and that’s good enough for me.

I would like to say that if you think you have Coeliac Disease, please speak to your doctor before you do what I am doing. I say this because you may have something else entirely. In my case, this is my second time around and I know the effect a gluten free diet will have on me. Also, I see my GP regularly so my health is under constant supervision. If the biopsy of my small intestine had come back as testing positive for Coeliac Disease, I would have gone on a gluten free diet, but even if it did not come back as positive, I probably would have still gone GF, because I would have been working on the idea that at the very least I have a gluten intolerance.

I would be interested to hear from anyone who has both ME/CFS and Coeliac Disease, whether diagnosed, or undiagnosed gluten intolerance.

Image credit and terms of use.

Published by:

Life As An ME Sufferer

Life As An ME SuffererYesterday* I wrote about an illness called Myalgic Encephalomyelitis (ME) which is an organic neurological illness. The reason I know so much about ME and try to raise awareness of it is because I have been a sufferer since 2001.

Imagine waking up one day, excited and happy; you’re going away for the August bank holiday weekend with friends. You sit down to a meal one evening, and over a glass of wine, have a lovely chat with friends. That, right there, is the last time you will ever feel healthy again as you begin life as an ME sufferer. Can you imagine that?

On 26th August 2001 my life changed forever. The next few days I was ill with what I assumed was food poisoning, even though I was the only one that was effected out of all the diners. The next few months I did not seem able to shake the extreme fatigue and pain. It felt like I had really bad flu all the time and my muscles ached and my joints were swollen and inflamed. I had never been ill and I did not believe in slowing down for illness. I had always believed in soldiering on; mind over matter and all that. It was six months before I saw a doctor and by then I could barely grasp anything, my arms were so weak.

I still continued to work until I was physically unable to and in 2003 I left my job. I planned to take a few months out to rest; little did I realise that it would be 7 years before I would be well enough to even consider working again. In 2005, after 3 years of tests, I was finally diagnosed with ME. It was good to finally have a name for the illness, but once I learned more about the illness, it was quite disheartening. Still, I tried any alternative treatment that I could, unable to accept that I was ill and I became more and more ill.

I spent 7 years housebound and even bedbound at times. I lost all my friends, my life, and even myself. But slowly, I found a way. I found a new me and I met some great new friends. I got better and I met someone and I got a job again. Of course, then I went and made the mistake of thinking I had ME, rather than remembering that I still have ME and I pushed my health too far and became ill again, but it is OK. I am working on my health and I am still working with others to raise awareness of it. ME is ME but it is not me.

*: This post was originally published on Bubblews in April 2013.

Original Image Credit and Terms of Use

Published by:

ME/CFS is NOT Demonic Possession

ME/CFS is NOT Demonic Possession

It seems completely unnecessary to have to say “ME/CFS is NOT Demonic Possession” but apparently some people still need to be reminded of this. I haven’t posted for over a week because as much as I loved visiting my family last week, it really took it out of me. I managed to get some basic work done this week, but I’ve been barely functioning and then along came the monthly monster and that did not help at all. But what has spurred me to write today is an e-mail I received from someone. The message is extremely ignorant, bigoted and the sheer arrogance of the man to actually send it to me is astounding, but still I am thankful as it has fired me up, after being a numb blob for most of the week.

I regularly write articles on other sites and I write about a variety of topics including recipes, horror movies, book reviews, product reviews, tarot and divination and of course living with a chronic illness. Every now and then I get someone sending me a message telling me why I have ME/CFS or a chronic illness. These are not from people who are doctors, fellow sufferers or even any kind of therapists. These are people that have seen I have a chronic illness and then they proceed to tell me how one or the other interests I have is causing my illness.

Here are some examples. I wrote an article for Halloween called ‘Ghostly Horror Movies Based On True Events’ which was just a collection of horror movies where the makers have based their movies on actual events. It does not claim that the movies are real or even says that the ‘true events’ have any real validity. Yet, somehow this article has lead people to send me messages telling me about how my illness is caused by evil spirits that I have attracted by watching and writing about horror movies. I really wouldn’t care if these people just left comments on my articles, as controversy is actually good for discussion and I encourage people to tell me what they think. These people though, seek out a way to contact me privately and send me e-mails telling me their wacko theories.

Another example is the message I was sent today, which unfortunately is not the only message of its kind that I have received. It stated that CFS is “correlated with demonic activity” and this person then sent me links to an article and some youtube videos about how reading tarot cards leaves you open to demonic possession. I have to say that the guy that e-mailed me today was very sincere and even said it was sent with the best of intention.

Often, these people have not read or looked at my articles, but have just seen the titles and assume things about me. Just because I write about a topic, it does not mean that I advocate or believe in the subject. Even if I totally ignore the validity of what they believe, why do they feel the need to warn me?

I find it extremely insulting that anyone would contact someone and state that their illness is the result of some superstitious and unfounded idea. I also find that people do it to me more because I have ME/CFS; I’m sure if I had any other ‘real’ (for them) illness, they’d be less likely to do it.

Unbelievably, as I have been typing this post, I received another message from someone on an article titled ‘How to Explain Your Chronic Illness to Friends and Family’ which states that there is no such thing as chronic illness and the person who wrote it claims to have had a “close call” with the symptoms and issues I write about. Not surprisingly this person is the owner of an empath website, so I’m sure he or she believes I am just an empath that is not controlling it properly.

This second kind of comment is actually more worrying than the first because its author does not believe there is any kind of illness at all, and to write about it or acknowledge it is seen as negative, and to give in to illness. I don’t agree with that at all and it is very similar to the awful ‘ill-thinking’ rubbish people who believe ME/CFS is psychosomatic come out with. The former types of comments remind me of those times when people suffering from schizophrenia would be accused of demonic possession. People stopped believing that, but it seems ME/CFS sufferers are still fair game when it comes to these types of ideas. The fact is that ME/CFS sufferers come from all walks of life and are of all ages. We have different beliefs, different lifestyles and some of us only have this awful illness in common. So even if tarot has opened me up to demonic possession, how do they explain the ME/CFS sufferer who has been ill since childhood and has never had the chance to do anything to allow demons in?

It is ridiculous and their reasoning falls apart with very little probing, but the arrogance of these people to contact ill people with their drivel is shocking. It is insulting and an awful thing to say to someone, no matter how good people believe their intentions to be. Do you think I’m over-reacting or do these people have a point?

Original Image Credit and Terms of Use

Published by:

The Issue of Weight and ME/CFS

The Issue of Weight and ME/CFS

I’m having an awful day after sleeping very little. I woke up several times because I developed a headache during the night. (How the hell does one do that while asleep?!!!) I woke up with such a painful thigh and hip that it took me a while to get up and moving this morning. So I’m feeling down and not really able to think much and get any writing done. But it seems my mental paralysis does not cover obsessing about my weight today.

I’ve never been a skinny girl and before I became ill, I didn’t even know how much I weighed. I was very comfortable in my body; I used to workout when I wanted to and eat what I wanted to. I was healthy and happy and I had never been on a diet in my life. Then I became ill and I piled on the pounds and that was when my weight became an issue. If I loved to eat and put on weight because of that I wouldn’t have cared; if my weight had changed because of any single thing that I had done, I wouldn’t have cared. But if anything I was eating less and in the first six months of being ill I had stomach bugs and flu symptoms almost continuously. My ballooning body was just another example of how my body was becoming alien to me.

As I didn’t know my weight before I became ill, I’m guessing I put on five or six stones, most of that in the first few years. It was actually more insulting to be so fat because ill people are usually frail and lose weight, so it seemed like just another reason for people to not believe I was ill. It seemed so unfair; if I was going to be ill, I could have at least had the added perk of losing weight!

But I didn’t constantly worry about my weight; when you have ME/CFS there are plenty of things to think and feel. It’s just on days like to day, the weight seems like an added insult.

When I began to feel better four years ago, the weight dropped off just as quickly. I lost 50lbs without exercising or dieting, or even increasing my activity. When I started being able to leave the house and did increase my activity levels, I lost weight even faster. I lost six and a half stones in one year. Of course much of that has been creeping back now that I’m ill again.

It is horrible and most of the time I try not to think of it as there’s not much I can do. But it does hurt. It seems and shallow and stupid, but my weight bothers me. My body feels alien, like it’s not my own. Plus I met my partner when I was going through a healthy phase; now he’s stuck with an ill fat woman. He never says anything and is so sweet, and normally I am grateful for that, but on days like today I wonder how much more he will take. It doesn’t help when my own father stated clearly that I was ill because I was fat, not fat because I was ill.

As with most ME/CFS worries, I can only hope that tomorrow is a better day.

Original Image Credit and Terms of Use

Published by: