Category Archives: Living with an Illness

How Chronic Illness Makes Us More Positive and Not Negative

How Chronic Illness Makes Us More Positive and Not NegativeAs hard as it is living with ME, the truth is that chronic illness makes us more positive and not negative. I’ve just finished writing a post on my other website about How to Stay Up in a World that is Spiralling Down. In it I outline my tips and advice on how to stay positive even when the world around us is increasingly negative. The fact is that everything I outline in that post has been learned from having ME.

As ME/CFS sufferers, we have more than our fair share of hardship and stress. Our lives are tough and yet we live. No matter how limited our lives may seem, we endure them and in most instances we do so with a smile. We live lives of pain and fatigue, we lose friends and social lives, some of us live severely restricted lives stuck in our homes or even beds, we lose financial security as our ability to work is affected and while all this and so much more is happening to us, we often receive little or no support from the medical world and even from friends and family. But the fact is that stress exacerbates our symptoms and just makes us so much more ill. Yet, we do it.

Some of the best friends I have are ME/CFS sufferers. They make me laugh, and lift me up no matter how bad things get. Even when those with a chronic illness have faced years of neglect and even abuse, they still hope and try every day, never giving up and fighting in any way they can.

There is this ridiculous notion that being positive means slapping on a fake smile and pretending you feel great when you feel anything but. The truth is that any hopeful action, any act to continue is a sign of immense strength and positivity, whether it is done with a smile or with tears.

So I have a message for every ME/CFS sufferer out there who can still smile and be kind, who gets out of bed, or even attempts to sit up or open his or her eyes. Yes, to you fellow sufferer, who fights for this illness to be recognised, who lends an ear to a friend, to you who writes about your experiences in a blog, or posts a photo expressing your existence I have something to say. Also for you, who is trying to raise a family, or raising funds for charity, I want to say this: every ME/CFS sufferer who struggles and dares to hope that tomorrow will be better than today, know that you are an example to the rest of the world and the simplistic terms of positive and negative can never sum up the life that you live!

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A Duvet is a Girl’s Best Friend

A Duvet is a Girl's Best Friend

Marilyn Monroe may have proclaimed that “Diamond’s Are a Girl’s Best Friend” but on a day like today it is a duvet that is my best friend. These past few days I have been trying to think of all the things that I am grateful for in my life and number one on that list right now is my big, warm fluffy duvet.

I wake up in the morning feeling safe and warm, nestled in the feathery goodness of my duvet. I leave it to use the bathroom and get a hot drink, and am then welcomed back into the coziness, which promises to help me get through the day. The temptation to sink down and allow the duvet goodness to envelope me is always there, but for the day it must only partially support and comfort me as I sit up and try to do some work and get some writing done. It is better than any desk I could sit at and more conducive to work than any office could be.

Even when I leave it to eat, or shower or do any of the chores that need to be done, my duvet waits there, promising me comfort when I am ready to return. You may think it is the bed that is the real friend, but a bed without a duvet just does not work, whereas any seat or bench is made infinitely better by the presence of a duvet.

When it is raining outside and I want to watch the world go by, I wrap myself in my duvet and we huddle, warm and cozy near the window. It is the perfect time to watch the world, because for once they wish they were indoors in their duvet too, rather than the other way around.

Then when the day is done, and hopefully before the aches have set in and the fatigue monster has swallowed me whole, my versatile duvet embraces me once more. As I rest beneath my duvet, I can let the day go; I made it through another day and I am warm and safe and snug. During the night whether I sleep or lay awake, my duvet will be there, consoling and easing me while the rest of the world sleeps.

It’s why I say a duvet is a girl’s best friend…well, when she has a chronic illness at least. My duvet helps me to get through my nights and days.

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I Heart London

I Heart London

I love living in London and I live right in the heart of this fabulous city. However, my health has not allowed me to get out and about much recently so I had really been looking forward to getting out and seeing even a part of it with visitors to the city. I haven’t posted in a while and yep, it’s because I’ve been extremely ill. I got so worked up and anxious about meeting my friend and his girlfriend while he was in London that I actually made myself very ill; I wasn’t able to meet up with him at all. I barely even got to speak to him on the phone.

On Saturday morning, after weeks and weeks I actually managed to venture out. I will hopefully be moving later this year and instead of leaving everything to the last minute which I physically am unable to do anyway, I decided to venture out each Saturday morning before the weekend rush and explore a different part of London to have has many options as possible before the flat hunting begins.

When I ventured out of the flat it was drizzling and cold; a typical February morning. Perfect London weather. The journey on the tube was eventful; there were the usual weekend closures but I finally managed to get to the Northern line and head up to my destination. I was sitting there in a mostly empty carriage, feeling slightly light-headed and like I wasn’t there, which is something that happens when I venture out after a long time. All of a sudden there was movement in the corner of the carriage and there was a man on his knees. He was throwing up and at first I was concerned, after all it was morning and I thought he may be ill, but when the acrid smell of alcoholic vomit hit my nose I remembered the lesson I learned at uni: too many vodka and orange juices will make you puke.

Luckily I was getting off at the next stop, so I didn’t have to breathe in that stench for too long, but other than feeling slightly grossed out, I actually felt good as I stepped off that train. In those few minutes I felt so normal and a part of the world. I was just like any other Londoner, travelling around on the underground, pointedly not looking at someone who had partied too hard the night before, throwing up. I even managed to walk around in North London a little, before I needed to head home; I didn’t see anywhere I would like to live, but I managed to once again feel connected to this city that I love. I also renewed my love for the area that I currently live in and while I’ll continue to look in other parts of town, I’m hoping I’ll find something here. I may have had to spend two days in bed with sore legs and a painful back, but I’ve been happy and in love with the city of London once again.

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Robert Miller Hunger Strike for FDA Approval of Ampligen

I was looking through some of tweets and I came across Bob Miller’s Hunger Strike, which he is doing to draw attention to the plight of ME/CFS sufferers in the USA and hoping that the FDA will approve Ampligen which has said to have helped ME/CFS sufferers.

I’ve been extremely ill the last couple of days and am having a hard time sitting up and typing, but I wanted to post this with Robert Miller’s youtube video. I’m sorry I can’t write more at this time, but there is more information here. I’d be interested to know how others feel about Ampligen, the chaos between the company that makes it and the FDA and also what Robert Miller is doing.

Here is the information from youtube along with his video:

On January 29th, I Robert Miller began a Hunger Strike(I am only taking in sips of water) to seek FDA approval of Ampligen, so one million U.S. Chronic Fatigue Syndrome (ME/CFS) patients and their doctors can decide if this medicine works for them..
By Saturday, the FDA is poised to deny the application of Ampligen, the ONLY medication in FDA approved clinical trials for Chronic Fatigue Syndrome. It has been under the watchful eye of FDA for 20 years and FDA has never halted the trial for safety issues. This drug works, It allows patients to regain some part of a normal life. Please share this video with everyone you know. I would ask MS, Lupus and HIV patients to recall what it was like with No available treatments and to please share this video.

Thank you,
Robert Miller

There is No FDA-approved medication for CFS, and none in the FDA pipeline. Ampligen has been tested safely for 20 years in FDA approved trials

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Strange Allergies

Strange Allergies

My current relapse is re-introducing me to many of the weird and (not-so) wonderful symptoms that were once a constant part of my life and the most recent to reappear are strange allergies that change from one day to the next. I can’t believe I forgot this one. When I say allergy, I guess I mean intolerance; when certain foods or even scents cause a physiological response. For me, certain foods irritate my lips, tongue, mouth and throat; causing swelling, itching and rawness. There are some scents and chemicals that also cause similar reactions; usually an irritation of the throat, nose and ears. I don’t know how common a symptom this is with other ME sufferers, but it is particularly annoying and really sounds like one of those things that I’m just making up.

How do you explain that you can use the same shampoo every day, but on a certain day when you’re feeling particularly ill, washing your hair with said shampoo can cause adverse physiological reactions? It can cause your eyes to swell up, and irritate your nose and throat so much it affects your breathing, and that is before you’ve even lathered up; just the scent of it has caused a reaction.

But anyone who knows about the disrupted immune systems of ME sufferers would not find these kinds of reactions to foods and scents and allergens even remotely surprising. I have noticed that these kinds of episodes occur at times when I am going through a relapse and I am feeling particularly ill. I remember a time when I used to take antihistamines regularly, especially in the summer months, but it hardly seems suitable for occasional reactions and I know how to handle my permanent ones.

I guess the answer, for me at least, is to limit the amount of allergens in my environment; I used to be good at that and had learned to get products that did not have strong scents or too many chemicals and I only ate fresh home-cooked meals made from pure fresh ingredients. It’s yet another reminder of how far I have strayed from the management plan, but more importantly, a clear sign stating that the most we can ever hope to do is maintain our symptoms, not remove the illness completely. That may sound defeatist and depressing, but it isn’t at all, because looking back at when I was maintaining my symptoms, it was the healthiest and happiest I had felt since I became ill. So it is definitely something I am striving for and all I can hope is that this time I don’t become complacent.

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Do You Ignore a New Symptom?

Do You Ignore a New Symptom?

When you have a chronic illness one of the major decisions you have to make is whether you ignore a new symptom or consult your doctor. This may not sound so huge, but actually it is. It is physically and psychologically exhausting to always be aware of every ache and pain in ones body. Yes, we’re ill, but we have to also try to live as normal and full lives as possible and that is not going to be possible if we’re always looking at the physical state of our bodies.

I remember I went through a phase at the beginning when I became aware of every part of my body; I knew which movement was affecting which muscles and joints because I could feel the pain and the discomfort. In time it just became something that I started to live with. Whenever I’d have a new symptom, I did not consult my doctor unless the pain really was unbearable or it completely affected my every day state of being. This was mostly because the stress of visiting my doctor and trying new medications was too much effort at that time. I was never really concerned that my doctor would think I was a hypochondriac because he had been my doctor for my whole life and knew me and my family very well, but I know that other people are concerned about running to their doctor with every symptom in case their GP writes them off as hypochondriacs. Doctors are our gateway to treatment, so if your doctor does not take you seriously, it could damage your chances of receiving the care that you need.

But the most crucial aspect of deciding whether to see your doctor or not is that a new symptom could be indicative of a completely new illness. I have to admit, I have been guilty of chalking every last symptom up to ME and that has not always been the case. Most recently, I became extremely light-headed and weak and was passing out and was also getting chest pains. These were not entirely new to me so I figured I was having some kind of relapse, but the symptoms were more severe than I had ever had them before so I was forced to see my doctor. It turned out I had a chest infection and a simple salbutamol sulfate pump cleared it up and I felt better. This is a very mild example, but there have been so many reports of people ignoring symptoms which later turned out to be something more serious, even cancer.

As if having ME or any other Chronic illness is not difficult enough, we are forced to find a balance between becoming too obsessed with our health and becoming too complacent about having an illness and assuming that every symptom we have is because of it. All we can do is trust in how well we know our own bodies and listen to our instincts. Also, having an understanding doctor really helps us feel comfortable in discussing any worries we may have without fear of being ridiculed or jeopardising access to future treatment.

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NHS Choices Rejects Honest Patient Review of GPs

NHS Choices Rejects Honest Patient Review of GPs

NHS Choices claims to be the “online ‘front door’ to the NHS” and to give you “information you need to make choices about your health” but nothing could be further from the truth especially in the case of apparent patient reviews of GPs.

The NHS website allows you to find a GP in your area and has information about what services the surgery offers and you can read reviews left by patients.

You are asked to rate the GP practice in the following different areas with 1-5 stars:

  • How likely are you to recommend this GP surgery to friends and family if they needed similar care or treatment?
  • Are you able to get an appointment when you want one?
  • Do the staff treat you with dignity and respect?
  • Does the surgery involve you in decisions about your care and treatment?
  • This GP practice provides accurate and up to date information on services and opening hours

In addition to this you have the option of writing a review. Sounds good, right? Well, not when the reviews submitted are rejected if they are too negative or contain specific information. A good review gives details of why a service or product is good or bad and yet this seems to be the exact thing that will ensure a review is not submitted on the NHS site.

I know this because I recently tried to leave a review for my old surgery and this is what I was sent back:

Thank you for contributing to the NHS Choices website. We have rejected your contribution because we consider it to be offensive to other site users, NHS staff or patients. Please see the site Terms and Conditions or refer to the Moderation Rules policy and consider reposting your comment. http://www.nhs.uk/Commentspolicy/Pages/Moderationrules.aspx

I wish I had kept a copy of exactly what I had submitted so I could repost it here, but it was so tame I did not think for one second that there would be an issue with it being rejected. The review I left stated how long I had been with the surgery, and my experiences with the three doctors and the reception staff. I did not use any rude or inflammatory language, and I gave examples in accordance with the areas I had been asked to rate.

If all I wrote was my experience at the surgery and if that factual, unembellished account was found to be offensive, then how do they think I feel as the patient who had to endure it?

How can a review just be rejected as offensive when it has not even had the chance to offend anyone? Especially as the surgery has the opportunity to publically respond to any reviews left on the site, so why not just publish the review and then allow the medical centre or GP in question to petition to have it removed if they really feel it is too offensive along with their reasons for this, as is done on other review sites?

I’m guessing the whole point of the review/rating system is to give future patients a good idea of what they can expect if they join that surgery. But how can it do that when honest reviews are being rejected as offensive? It makes the whole thing an exercise in futility and makes me wonder what is really being said about practices by patients that is just not being published.

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A New Day, A New Doctor

A New Day, A New Doctor

I’ve been with my current doctor’s surgery my whole life and since the normal spate of childhood illnesses and up until I became ill with ME in my mid-twenties, I really had little or no need for any medical attention. However, even in the last ten years I have noticed a severe decline in the service provided by my surgery.

When I first started to get involved in ME/CFS groups, I heard so many horror stories about the way ME’ers were treated by their GPs. I heard how one girl was told by her GP that she was hungover for three years, despite repeatedly telling her GP that she could not drink alcohol as it made her even more ill. Others were accused of having a cold/flu, of imagining it, or even told off for wasting the doctor’s time. I was just so grateful that my doctor listened to me and sent me for test after test to investigate my symptoms, that I never doubted the medical care that I received. My GP was always open to letting me try different medication.

Then a couple of years ago the surgery moved and there was a change in staff and the place has been going steadily downhill since then. Last year I had an extremely traumatic experience with the practice nurse and when I tried to complain about it I received no help from the surgery or my doctor. It has been a real weight on my shoulders since May last year and has been causing me so much stress. My sister kept advising me to find a different GP, but I never did, I was stuck in the confusion and stress caused by this incident.

But I have been thinking and if I am completely honest, my GP has not really treated me or tried anything new in so long. The last time I asked to be referred to a specialist, he offered me new meds. The fact is that he may have been a very good doctor at one point, but he is semi-retired now and not as committed to his job/patients as he used to be.

So, I’ve decided to find a new GP. I’m not deluded enough to believe that a new doctor will solve all my health problems, but the fact that just making that decision has left me feeling lighter and happier than I have done in a long time tells me that I have made the right decision. Plus, you never know what a new set of medical eyes and ears will come up with. All I do know for sure is that my current GP seems to put everything down to ME and doesn’t really investigate or treat it as he has that “Well, there’s no cure for ME” excuse. I’ll head out later this week and pick up a registration form from the new medical centre I’ve found.

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The Importance of Routine

It’s very early on a Sunday morning and I lie in bed tapping out this post on my phone, thinking about wasted time. I used to spend all week looking forward to the weekend when I got to spend quality time with my loved ones. I used to go out exploring but recently because of my health I can sometimes manage a short walk but not much more. My other half suggested a short walk up to Knightsbridge yesterday as he needed to get some coffee pods for his Nespresso machine but I was not up to it. In fact I spent the whole day in bed, sleeping on and off. Saturday’s are so precious that I can’t help feeling the crushing disappointment of having wasted a whole one.

I can feel myself slipping away again and it is frustrating as hell as I don’t know what to hold on to. Looking back I can see that the distance between me and the world has been growing for quite a while now, but the recent idea of having to interact in a ‘normal way’, which is what Fred’s visit to London next week represents (see last post for more details) has been a sharp wake up call.

I keep saying it’s time to stop denying the severity of my health, and yet I keep having to newly grasp how bad things have gotten. So, perhaps it’s time to just stop thinking about that all together. I need to stop thinking about all that I can’t do; time to get out of reactionary panic mode and actually look at where I am. What can I do?

Routine is not a four letter word!

If you look up quotes about ‘routine’ you’ll notice that it is seen as something awful to be avoided at all costs. Just look at these examples:

The Importance of Routine

But the truth is that routine saved my life once and I’m convinced it can do it again; far from creating a zombie state, it can save me from one and aid me in putting back the pieces of my life. Now it’s not always easy to stick to a routine when you have an illness like ME. But I found it helpful to do things like meals, showers and all those little things people take for granted, according to a routine. It also means I don’t need to plan the day anew every day. I have a set routine and the most I have to do is leave out something. It means I get to know how many spoons I have and need for the basics.

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Refuse To Be Ill?

Today I’m so ill and beyond exhausted – I don’t just need someone to make me something to eat, but they also need to chew and swallow it for me too. I posted something similar to that as my status message on Facebook (first mistake, I know) and my friend who will be visiting London next week responded with “Try to shape up for next Wednesday sweetie!!” I know he means well and I get the sentiment, but it’s just too much today and this comment and his subsequent comments have really upset me.

There’s a quote by Edward G. Bulwer-Lytton:

Refuse to be ill? If only we could!

I think that is absolutely ridiculous advice. When I first became ill, I totally ignored it for 6 whole months. Then even after I was forced to see a doctor and started to have tests, I continued pushing myself and refused to acknowledge I was ill as I was a believer in just soldiering on; to give in to illness was a sign of weakness. I basically did what is suggested in this quote for two whole years and I went from being mildly ill, to severely ill. I certainly didn’t do myself any favours especially as I later learned that an early diagnosis and adequate rest at the onset of symptoms can lessen the extent and impact of the illness.

It wasn’t until I fully acknowledged that I was ill, and totally gave into it that I began to get better. Then, once again, when I began to ignore the fact that there was even such a thing called ME in my life, my health declined and declined fast.

In so many ways I have started the whole process again. This situation with my friend visiting is the perfect example of that. I had a friend from Italy visit a few years ago, but I had no problem telling her I was not well enough to meet her. It has been over a year since I have seen my best friends, and that has not been an issue, yet somehow I seem to have gotten myself into a situation where I’ve agreed to do a lot more than I can do. As awful as it is to say, some of that old embarrassment associated with admitting how ill and limited I am has returned.

So much for focusing on my health and putting it first. I think I may have to be completely honest; firstly with myself and then with my friend. I would love to spend a few days palling about with friends around this beautiful city; one of my favourite things is to explore London with visitors. But as hard as it is to admit, I cannot do it.

On a more positive note, I was given a really interesting book about Bioenergy for my birthday and I shall be adding a book review about that very soon.

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