Monday 30 November 2015

On the attitude of M.E. patients towards mental illness

Many people mistakenly believe that M.E. is a mental health condition, because of this M.E. suffered can get very touchy about the issue. They are often found saying things like: 'M.E. is not psychosomatic it is a real condition.' I must admit that I have done this too. The problem is that this sort of language belittles mental health problems; it is highly offensive to say that mental health problems are not real. In an attempt to defend ourselves we end up causing more pain by offending suffers of other chronic illnesses. At the end of the day, these are people who we should be more understanding of. They too have an unseen chronic illness which is misunderstood by society and even believed by some to be a 'choice'. They are in the same boat as people with M.E, we should support them and they should support us.

I know that I have spoken to close friends, strangers and medical professionals who have clearly held the view that M.E. is a psychiatric condition. I have always find it aggravating when people are unwilling to look beyond the exterior of M.E. and realise that it is a physical disease. It struck me recently is that if those people really did think that I was mentally unwell, they treated me appallingly! My point is that it is really easy for me to be aware of the mistreatment of M.E. suffers, but the same thing is happening to other illnesses too. In a different way of course. I have noticed that people who believe that I am mentally unwell have drawn away from me, and medical professionals have not followed it up.

Not to mention the unhelpful patronising suggestions that I have had from people such as "try and think more positively" "maybe if you were able to forget that you are ill it will go away" "try and punish yourself every time that you feel exhausted" "go outside more" "just push through" "maybe if you had more friends you would get better?" "have more fun". All of these comments I am sure would not be comforting to those who have mental health problems, just as they are not helpful to me.
Source

A phrase that people with M.E. often say is 'it's physical it's not in the mind'. As someone who has studied biochemistry, I have spent many hours in the lab working on chemical experiments. I can certainly say that chemicals are real you can see them, touch them and move them. Just because chemical reactions are happening in the brain in tiny amounts, and because we can't see them doesn't mean they aren't happening. In someone who is mentally ill, these reactions are happening wrong, just as the metabolic and immune reactions are happening incorrectly in people with M.E.

I am fed up of hearing defensive knee jerk reactions from the M.E. community saying that M.E. is a 'genuine' illness. No one would choose a life of depression or any other mental illness for that matter, mental illness is not a choice. We are not so different from each other, both patient groups are wildly misunderstood. Many people suffer from both physical and mental health problems, that is nothing to be ashamed of. After living with the stigma of mental illness, without actually suffering from it for many years, I don't care what people think. People are afraid of talking about mental health because they think that they might catch it which is ridiculous and offensive. Mental health problems thrive off secrecy, it is only by talking about them that we can get rid of the stigma and help people to get a diagnosis as early as possible. I am prepared to fight mental illness stigma as well as M.E. stigma, both patient groups need it.

Sunday 29 November 2015

Why the public opinion of M.E. needs to change

A few months ago I was at a wedding, and was taking to someone who I have known for years. They said that in their opinion ME is caused by depression. I was expecting this at some point throughout the day and tried to bat it off before moving on. But months later their words still haunt me, and so do those of doctors and other friends and family from over the years. Recently I have been asking myself 'why does it bother me so much when people think that M.E. is psychiatric?' At the end of the day whatever the cause it has still had the same impact on my life, and I try not to be affected by the stigma of mental illness because I know that it is real illness and never a choice (more on that in a follow up post).

I have realised that I find the misconception that M.E. is psychological upsetting for two reasons: 1 It holds back funding for biomedical M.E. research from being raised. 2 It has led to the development of harmful treatments which have damaged the health of me and many other people with M.E.

First the research aspect of it. The mental health label has served as a cheap way of dealing with M.E. sufferers for far too long. It has been an excuse not to put money into expensive biomedical research for M.E, as a 'valid' explanation of the disease has already been found. The last time that the UK government funded research into M.E. was in 2011 when a large psychological trial was done, the results supported the psychiatric hypothesis for M.E. Despite the fact that the results have never been successfully repeated, no healthy controls were used and the researchers did not disclose relevant conflicts of interest, the results have been used to shape the treatment guidelines for M.E. in the UK and many other countries. It is difficult to find out whether the UK government has ever spent money on quality biomedical research into M.E, there haven't been any well known studies and no funding has been put into M.E. since 2011.

The lack of funding has meant that patient groups have had to fund their own research, a slow and challenging prospect. It is very difficult to gain credibility and support for an illness which is widely believed to be psychosomatic. It is only now that that the scientific community are beginning to catch on. Some small studies have been carried out in the UK but not enough to gain momentum yet. We need GPs and the public to campaign for research.

Image source

Now onto my experiences with treatment methods which have made me ill in the past. I have often been told to push on through in an attempt to make myself more healthy, which has caused relapses. I have also been told to think more positively and ignore my signs of fatigue and pain, I was told that if I ignored them long enough they would go away. Thinking positively was one of my main strategies at university, this lead to my biggest relapse ever. I am now possibly more ill than I have been since the start of my illness, I am certainly not recovering at the rate I used to.

Another example of the way that this attitude to my illness has caused extreme payback was several years ago when I was advised by someone (I think it was a counsellor) who told me to wear a tight hair band around my wrist and ping it every time that I felt I couldn't do something, I was then supposed to carry on and just do it. The pinging sensation was supposed to teach my brain that those thoughts were bad and I was told that if I did it right then those thoughts would eventually go away. I didn't tell my family or friends that I was doing the 'treatment' because I didn't want them to get their hopes up or pressure me and keep checking in on me, but I really wanted to get better so I religiously did it. It is safe to say that this caused a relapse within two weeks. Not only had I caused myself unnecessary physical pain and a relapse, but I was running out of treatment options and had got my hopes up for no reason. It was a devastating experience, and many other people with M.E. have gone through similar things.

I don't get upset when people think that M.E. is psychiatric because of the stigma, I don't mind what people think of me. The reason that it upsets me so much is because it gets in the way of scientific progress, and means that other people are going to receive harmful advice. I can't stand the idea of either of those things. It never gets any easier to deal with the neglect that the disease has, and continues to face. It's the suffering of others that I can't handle. I used to think that the public opinion didn't matter and that "the truth will out" no matter what, but I have realised that public opinion is everything. Real change will only ever come from two things, public pressure on the government to fund research, and money raised for charity research. Both these things rely on large numbers of supporters which unfortunately M.E. does not yet have. I encourage you to challenge the idea that M.E. is psychiatric when you come across it, and to campaign for better biomedical funding. We need change! 

Thursday 29 October 2015

Why the idea that exercise cures M.E. is damaging!

When I first started getting ME symptoms I played more sport to try and ward it off, I ran myself into the ground! 8 years latter I still haven't learnt, I went to university in 2015 as advised by doctors who told me that I would be completely fine. But aged 23 I am back where I was when I was 15, all that hard work of resting and pacing has gone to waste. Doctors give advice that is harmful. It is crazy to think that if you have ME you are better off not seeking medical advice for it, or finding a doctor who is clever enough to know not follow the rules.

The problem with ME treatment is that it is never followed up, I have been told by countless doctors to just push on through. But by the time my health has deteriorated due to following their advice I have been discharged, (or I have moved on because no one wants to go back to a doctor who has made them ill!)

The payback that ME patients get after exertion is rarely instant, often I will get payback the next day or a few days after and it can be difficult to join the dots between the two. When I went to university I was doing slightly too much every day over a long period of time, this began to catch up with me after a few months but I didn't really relapse until a year and a half in! The doctors who I saw during university no longer see me because now I have left, and the ones who I saw beforehand were from an ME clinic who discharged me because they were only allowed to see me for about 5 weeks. My GP has stopped suggesting that I exercise. 

What I want to know is, is there any mechanism for doctors to report back to NICE* that their techniques don't work? All around the country there are isolated GPs who have learnt from experience that the NICE guidelines don't work for ME. Once I even saw an ME specialist who told me to rest, rest, rest. Until the official guidelines for doctors change, the overall approach will remain the same and patients will continue to get more ill after medical advice instead of better. 
*NICE guidelines are used by all GPs to advise them on the correct treatment for their patients.

Yesterday the Daily Telegraph published an article with the title "Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise". (I won't link it here because I don't want it to get more views.) It was reporting on an article in the Lancet which said that GET (graded exercise therapy) and CBT (cognitive behavioural therapy) can improve ME. The NHS Choice twitter account then posted this tweet (see below), indicating that they support this type of journalism. I have include the response from two fellow ME sufferers, to show the scale of harm that can be caused by this attitude.


It is a shame that serious biomedical research dose not get the same media attention as the psychological approach. This is probably because it is not supported by the NHS. There is a lot of exciting research going on now, and it is beginning to gain interest form the scientific community. Most notably the drug Rituximab has been shown to be effective in 64% of patients. But there has not been a media storm about it, and the government are showing no signs of funding research into it. 

The ME Association is currently campaigning for graded exercise therapy to be removed from the NICE guidelines, as it knows that GET can be extremely harmful to ME patients. The problem is that the NICE guidelines on ME are not due to be renewed for another 4 years. The ME Association say that if there was a drug in use which was proven to be harmful, it would be removed from use immediately. See here for information on the ME Association's position on GET, and here for a press release on the matter!

By definition exercise exacerbates ME. NICE themselves describe ME by saying "exercising or concentrating on something makes your symptoms worse" see here. Yet they still recommend graded exercise therapy as a treatment here. Something doesn't add up!

I hope that you have enjoyed this blog post, if there is anything that you would like to add please do so in the comments!

Friday 2 October 2015

Things to say to people with chronic illnesses, and how it it will make them feel

A few months ago I shared a blog post on what not to say to people with chronic illnesses so it seems only fair to follow that up with things you should say.

I know I don’t understand

Showing that you know you don't understand is often the best thing to do. Unless you have suffered from a chronic illness yourself, or maybe lived with someone who does. You probably don't get it, and that's fine as long as you know that you don't get it. Honesty is so important, a good friend of a chronic illness sufferer leaves space for the "unknown" and just works with what they have. You don't heave to know what it's like to be a good friend, you jut have to be there for them.

Is there anything you would like me to read, so that I know more about your condition?

This shows willingness to invest time into learning more about a person's condition, which is not only caring but also really practical. It is likely that the person with the illness does not want to spend a lengthy time discussing the ins and outs of their affliction, or they may not feel equipped to talk abut things properly. Often other peoples word's are the best for explaining things, perhaps it's a charity leaflet or another sufferer's blog. It's good to give the sufferer the choice of where you get your information from because there is a lot of dodgy stuff out there! ...people claiming that certain illnesses aren't real or publishing incorrect/out of date information.

Can I help you, is there anything I can do?

It can be difficult for chronically ill people to continually ask for help, especially if they do not feel that anyone is extending a hand. Granted people are not telepathic and so don't know what they can do to help. Asking what you can do (with the intention of following it up) is a good way to bridge the gap. The chronically ill person may not know what they need, or may not need anything from you, but knowing that you are there if they need you is a great reassurance. This subject can be a touchy one for people who are prone to feeling patronised, when it comes to this you have to know your audience and how they are likely to respond as with everything. On the whole though the offer of help is a comfort.

I hope that today is kind to you/I hope that you are as well as possible at the moment

This acknowledges that not all days are good, and that very often better days are filled with symptoms. Chronically ill people don’t get "days off" from being unwell, so never “feel better” or have an “amazing day”. Some people find it upsetting or insensitive when terms like these are banded around. Even if they are used with the best intentions it can remind people of their constant limitations and may make them feel as if they are misunderstood. The phrase 'as well as possible' is often shortened to AWAP online and in writing.

Tell them your news

There may not be much to talk about, and the person who is chronically ill may not have much going on in their life. By telling them your news, it is a way of showing an interest in them, and giving them an opportunity to give you any news they may have in return. Leading with an open question like, “how are you?” or “what’s new with you” can be difficult because they may not know what to say, if they don’t have any news (god or otherwise) or if their symptoms are just the same (and as miserable) as last time. Sharing news is a normal part of friendship, often people feel the need to withhold information if they have been up to something exciting, and know that they have done things that the chronically ill person cannot do. Overtime this is unhealthy as it leads to a lack a of communication, which can ultimately lead to the breakdown of the friendship. Sometimes the best way to be there for someone long term is to talk about yourself every now and then, because that it what happens in a normal friendship!

Reminiscing in general

This is something that those who are chronically ill do a lot. It is fun to remember the good times that have been had, they keep people going when things are tough, and bring hope for the future. It is especially helpful to reminisce with people who experienced the same thing. This validates the fact that the chronically ill person was there, and of course that it actually happened. When you are ill you former healthy life can seem very far off and it can be difficult to remember what actually happened! Some people which chronic illnesses have poor memory due to meds, brain degeneration or lack of stimulation. It is nice to be gently reminded of old times with the aid of photos or videos. Doing this too much can seem like you are permanently living in the past though, it is important to be forward thinking and live in the moment as well.

You are good at/I like you for your….

It can be easy to fall into the trap of telling people that “things could be worse” this is a blatant cover-up of the bad things. People also often lie about a person’s abilities to try and make them feel better about themselves. Again this is obvious to the person who is chronically ill, they can see what you are trying to do... and it isn't working! Instead focus on the genuine positives there are always some, it will build up the person’s self-esteem and make them feel valued.

Tell them that it is okay if they have to cancel plans or take a long time to reply to you

This shows an understanding of the limitations that the illness places on their life, above all it demonstrates that you accept them for who they are in spite of this. You know that they did not choose illness, this shows that you are going to stick with them even though you don’t have to, because they have to stick with illness even though they don’t want to. You are choosing the person over their illness.


I am very lucky to have some lovely friends around me who inspired this post. When I first got ill 8 years ago I wouldn't have known where to start with this, I wouldn't have even known 5 years ago for that matter! These days most of my friends have M.E. or another disability themselves it’s the way things very often go, we understand each other. We know how to treat each other because we have been treated that way ourselves and learnt the right way to go about things. At university I met some gems of people who knew what to say too, I don’t know how but they did, perhaps they are angels! Very often healthy people who "get it" have someone in their life who has experienced a chronic illness, it’s almost like a secret code that only people who have come across chronic illness understand! So here it is, my ‘spoonie tool kit' my best advice on how to be there for someone who has a chronic illness!

Obviously not everyone will respond the same way to this advise, it is just my opinion. I would be interested to hear if anyone agrees/disagrees with me! Let me know in the comments!

Saturday 19 September 2015

My Lumie Light

A few weeks ago on Instagram I said that I would write a review of my Lumie light after I had been using it for a month. I didn't want to jump into it straight away and say that it was wonderful, I wanted to know how it would affect me long term! This review is a bit later than intended, I have now been using it for almost 9 weeks most days. Initially I wasn't sure if it was doing much, but after a few days I noticed that I was sleeping better and felt more alert during the day.

Many people with M.E. use SAD lights to help them wake up in the morning, I had put off buying one for years as I wasn't convinced and they are quite pricey! But every year at around springtime for the last few years I have thought to myself that there must be something in it because I always feel that tiny bit better. When you are chronically ill you will do anything to make you feel better! SAD stands for seasonal affective disorder which is a form of depression that some people experience in the winter months when there is less light around. Although this is not the reason that people with M.E. use them, more on that later!

Since I have been using it I am sleeping much better (I have never been a good sleeper, and I honestly think that this is the best I have slept since I was an infant)! Not only am I sleeping earlier, but a deeper sleep and for not as long. I wake up at a more consistent time and actually feel drowsy, yes drowsy in the evenings before sleep! Anyone who has M.E. or who knows me well will know that despite popular belief M.E. sufferers rarely feel sleepy or tired. We are just in a state of permanent exhaustion making it very hard to sleep!

Being a SAD light it also combats some of the psychological symptoms of being chronically ill and locked up in the house all day. There is no doubt that it makes me feel "brighter". I don't see the sun much, and do not therefore benefit from it's natural endorphin inducing effects. I do wonder if all the years of very low sunlight exposure have given me a very mild form of SAD. I do know that the sun gives me quite a happiness boost when I am lucky enough to see it!

In the leaflet that comes with it it also says that one of the benefits of using the light is that it counteracts over-eating. This is something that I am mildly aware of, feeling sluggish all day and low on energy, I am often drawn to snacking. In my mind I hope that it will give me an energy boost. (I always want to have the maximum energy possible.) It has lead to a slight habit of overeating, not extreme by any case but it is certainly something that exists in my life! Since I have been using the light regularly this is another thing that has changed. I now have much more defined meals and feel full once I have eaten. I consume less calories per day and feel much better for it.

Yes I still have M.E, yes I am still ill! The light certainly is't a cure for it, but In my experience it combats a few of the symptoms. In the long run it must be doing me some sort of good especially as a result of the better quality sleep.


I think that people shy away from trying SAD lights because of their connection with mental Heath. It doesn't work because M.E. Is caused by depression at all, it is because there are benefits that the body gets from exposure to the full spectrum of light, which people who are not regularly exposed to sunlight don't benefit from. The hormones that control sleep are set into rhythm by natural light; mood and "alertness" are also improved. I hope that this will be a way for me to get the most out of my health at the level that it is at.

Many brands make SAD light boxes, I decided to go with Lumie as they seemed to be a high quality brand. I bought a refurbished box for I think £69 which works perfectly, it arrived the next day! They offer a trial period of 1 month so if you do not notice an improvement within that period of time, you will get a full refund no questions asked. I bought the model Zest which I would highly recommend, it is portable so I will be able to take it with me if I go away.

This product won't be for everyone, is not a cure and it must be used every day preferably at the same time to be effective. Obviously there is always a chance that some of my M.E. symptoms may have naturally improved over this period of time. However the good quality sleep and brightened mood in particular I am convinced are due to the light therapy.

Needless to say I was not paid by Lumie to write this review!

Tuesday 7 July 2015

My last doctor's appointment at university

Do you know what my doctor said to me the last time I visited before dropping out of uni?  I asked for a wheelchair, he said that he couldn't condone that and that I just needed to try walking.  I said to him I can't this is the first time I have left my flat since being back from Christmas, and I had to take a taxi. There is no choice but for me to use a wheelchair, I can't get to my lectures.  He told me that I did have a choice.  I told him that my health had deteriorated because I had been walking, and that to walk more would damage my legs more.  He told me that it was all in my mind and that there was no evidence that M.E. was physical.  I questioned it, he brought up XMRV in a very flippant tone. (If you don't know about this, it was a virus that was believed to be the possible cause of M.E. about 5 years ago. The theory had a very high profile, but has since been disproved, this has lead to the disgrace of the main scientist involved on the grounds of scientific misconduct).

I told him that I wasn't depressed, I loved my degree and that I really enjoyed it, but if he didn't help me I would have to go home.  He told me that it was "my choice whether I stayed or went home" in a condescending voice. I said that I had been getting a lot of pain in my legs, but told me that he "thought it was very odd" and "didn't know why that would happen."  He said that there was no reason for there to be pain in my legs, basically telling me that I was lying. I asked him to help me apply for a blue badge, (there was no parking outside my student building) and my parents were often visiting to help me.  We argued about whether or not my disability deserved a blue badge or not, and then if I even had a disability.

We did agree on one thing, which was that a referral to the local ME clinic was not necessary. I had already been to one before and had been discharged. They all give out the same information, and there is generally no benefit in going more than once.  I was far too unwell to visit one anyway and had of way of getting there.

At the end of my appointment, he complained about me taking up so much of his time, and for making him late for his other patients.


Needless to say that I cried a lot during this appointment, I was exhausted in pain and had nowhere else to turn. I could see my future running away form me! I have spared the details of the number of times that I cried and that he repeated himself.  I was desperate and seeing help and he mocked me.

You would think that with a chronic illness I am in and out of the doctor's a lot, but when experiences like this are common, it's easy to see why I avoid them.  I also know that they mostly can't help me, because M.E. has no cue, I just tend to go for run of the mill things.

Why have I written about this appointment and no others?  I have had many experiences of visiting doctor's who have held these views. In fact they all do initially, but once they realise that they aren't getting anywhere with the traditional technique, they tend to soften up... that or I move on. This was the first time that I had answered back, and I was surprised at what I got.  Absolutely no tolerance, no interest in my opinions, zero sympathy and I was accused of making things up. This doctor seemed to have no understanding of any of the research regarding M.E. that was newer than 5 years old, yet it affects more than 250000 people in the UK.

I hope for my blog to be a place of both positivity and truth sharing. Today it was for truth sharing, I want to reveal what it is like to suffer from a chronic illness. Experiences like this must be recorded and shared because otherwise thy will never change.

For those of you who don't know I left the university due to my M.E. about 2 weeks after this appointment. I am now at home and recovering, my health has stabilised and I think that I am gradually improving. My home GP has also allowed me to get a blue badge, wheelchair and is helping with the application for benefits. She is much more sympathetic and understanding, although unfortunately still cannot do anything to help lighten my M.E. See here for my strategy on improving my health.

I do not blame this doctor at all for the state of my health before or after my appointment with him. I know that he could not do much to help my M.E. in general.  But I do not expect to have a battle when I go to the doctor's over the existence of my illness or my sanity.  I did however expect him to help me with the simple requests that I had, including accessing a blue bade and discussing my pain and sleep medication.  

I don't want sympathy over this, I am over it as it happened more than 6 months ago. I would just like to raise awareness of what it is like for people with M.E. Stories like this are not uncommon.

I hope that you are all as well as possible today, and that those of you who need them have access to polite and informed doctor's. If not, I assure you that they are out there and you just have to look for them.

Sunday 21 June 2015

My Blue Sunday Tea Party

A few weeks ago I mentioned on twitter and instagram that I was having a Blue Sunday Tea Party.  My intention was to have a write up on here with a bit more information about the day and to announce the final total a few days afterwards. However unfortunately life (mainly chronic illness) got in the way, and it has taken me several weeks to do so!

The event was started by Anna Jones who had the first Tea Party 3 years ago.  Her initial idea was to have a Tea Party with friends and family where she asked them to pay what they would expect to spend on tea and coffee in a tea shop. She gave the money to the M.E. Association, and thus Blue Sunday was born! Since then the event has gradually gained popularity, and has been taken on by the M.E. Association as one of their official fundraisers. It is held on the Sunday of M.E. awareness week every year.

When me and my parents saw an article about the Tea Party in the M.E. Association magazine, we knew that it was something for us! We have held similar events in the past, and my Mum is known for making cakes. We invited our neighbours, friends and my parents colleagues. It was difficult to know what to plan for, as we didn't really know how many people would be coming. My Mum baked about 10 cakes just to be sure and Dad tidied up the garden and the front of the house. We decided to divide the Tea Party into a morning and an afternoon session, to give time  to tidy up, reset the tables and eat lunch.

In the lead up to the tea party my sleep pattern had become very late due to insomnia, a common M.E. symptom, so we planned for me to only come to the second half of the tea party.  Unfortunately due to all of the excitement and hearing people come into the house, I was actually awake unusually early, which made me too tired to participate in the fun!  I was resting in the bedroom above the front door though, so I could hear people come and go, and the house was full of laughter which I very much enjoyed! Looking back I felt part of the event, and realise that going downstairs would have been far more tiring than I had previously imagined. I would have unwittingly been the centre of attention, everyone asking me how I was and so on. Also the noise would have been too much for me as I suffer from sensory overload, a symptom of M.E. where the body is unable to tolerate loud noises and finds them painful to take in.

I have noticed that since the Blue Sunday Tea Party, friends and family (even those who weren't able to attend the event) have been exceptionally kind and understanding. One neighbour who couldn't come to the tea party not only gave a generous amount, but also out of the blue picked up an audio book form the library for me as she knows that my brain fog makes it very difficult to read, she also gave me a bar of chocolate, it is worth mentioning that audio books are not free to borrow!

Another friend of my parents after talking to my Mum about my hobbies brought around a HUGE  bag of the most lovely fabrics, beads and trimmings for me to experiment with.  Mum had just told her that I am now able to sit and sew for a few hours a week.

The kindness that has been shown from friends and family has really astounded me.  It shows that when given the information people really do care and are happy to help, they just need to know what to do.


Millionaire's shortbread from the tea party

The final donations have all come in, and I am happy to say that we made £506.00 not including gift aid! I couldn't be more pleased with this as my initial goal was £200, and I felt that the number was a bit of a lofty aspiration.

After the success of this year we have already begun to think about what we would like to do next year.  At the moment my sister is planning to run the Southampton half-marathon as long as her training goes to plan!

In the mean time I am thinking about what I can do to raise money, because I am very aware that I haven't actually done anything. All of the work has been done by my family members! I have a lot of free time since leaving university, and need something to do as I gradually get more energy. I am thinking about starting an Etsy shop selling the things that I have made such as knitted accessories and bags made on the sewing machine etc.  I am not sure how it is going to go though, watch this space and I will let you know if I do do anything.

I know that I have been quiet for a while, it's not because I have been especially ill, I just needed time to recover after a busy May. My health has been gradually improving since January, so I hope to be doing more as time goes on.

Tuesday 19 May 2015

Guest post by Kat: How M.E. has changed my life

I asked Kat to write a blog post for M.E. awareness month on the impact that M.E. has had on her life. The aim of this was to show that M.E. can affect anyone, and can strike at any age.  Kat and I have had a very different life experience however we are united by the same symptoms.  Here is what she has written. 

I came down with M.E. when I was 13. Unfortunately I was told by a paediatrician to keep pushing myself until I was back to normal. It was only later we found out that his advice was completely the opposite of what I should have done and I very quickly spiralled downhill until  I was practically bedbound.  Fourteen years later my health has improved significantly, but I still struggle with M.E. on a daily basis.  It’s changed my life in so many ways.  These are just a few:

Appreciating the Little Things

When I was first ill the most energetic thing I was capable of was brushing my teeth. Sometimes (even now) I'm too exhausted to watch TV. It means that now I'm well enough to wash my hair and do something else on the same day that that’s a really big deal. When I have energy I make the most of it and spend it on something worthwhile like my Open University Degree, volunteering for the Association of Young People with M.E. or doing things with friends and family. However much energy you've got, make the most of it.

Real Friends

On a good day I could send one text message. That was it. As you can imagine, that meant I didn't have much of a social life. Sadly many people with M.E. become isolated and lose most, if not all, of their friends. Unfortunately I was one of them. I found that out of sight was out of mind and that if I didn't contact people first they almost never contacted me. People stopped inviting me to things because they assumed I wouldn't be well enough to go. They were probably right, but it was painful that they didn't even bother to ask and never organised anything they knew that I would be able to join in with. Although I lost many of my best friends, I did find others who were more understanding and supportive. I'm still in touch with them and I think I always will be.

Powers of Organisation

People with M.E. often have super-human powers of organisation. They have to. If we want to do something or go out it has to be planned with military precision so it takes as little energy as possible. If I have an essay due in I can’t pull an all-nighter and get it all done at the last minute. I have to start over a week in advance to make sure I can get it in on time. If you want something organised, then ask someone with M.E.!

Opportunities

My brother went to Cambridge University. I was gutted that I not only didn't get to go to Cambridge, but I didn't get to go away to any university at all. However, as one door closes another door opens. I'm now studying a Degree in Psychology with the Open University which I absolutely love. I would never have studied Psychology if I hadn't got M.E. as it wasn't offered by my school. After I had to take a year out of education because of my M.E. I went to a local college which did offer Psychology. I've also been volunteering for the Association of Young People with M.E. for over a decade. I've made so many new friends through AYME and really enjoyed volunteering with them. I was even nominated for a Young Achievers’ Award because of it.  It’s difficult to imagine my life without AYME now.


There are a lot of downsides to M.E. and I wouldn't wish it on my worst enemy. It’s frustrating dealing with people who just don’t understand and having to put up with strangers telling you to try some weird treatment. On bad days it makes you want to cry your eyes out and even on the good days you can’t do half as much as you want to as you just don’t have the energy. There are good points though and as my health improves I’m certainly making the most of it.

Please help raise awareness of M.E. by taking a selfie holding up the words #NowYouSeeME and text ‘AYME01’ followed by your donation to 70070. Or you can donate via AYME’s website (www.ayme.org.uk).

Thank you Jenny for inviting me to do this guest blog post J



Friday 15 May 2015

My first year of blogging

So it's my blogiversary.  I couldn't let this day pass without giving it a mention, here's are my thoughts one year in!

I started this blog one year ago with no idea what would happen.  I didn't even know if blogging was something that I could keep up, I entirely expected to give up after 3 weeks and for the whole thing to be just a 'phase'.  However I think that accepting that fact and not worrying where this experience would lead me, weather I would fail (in the eyes of other people) or what other people might think has really freed me.  It's freed me to not worry if I haven't posted anything for over a month because I have had a relapse, it's freed me to not worry if my content is of poor quality, but most of all it has freed me to be myself.

I've defined unique standards for myself, not the ones that we us usually judge other people's online content by, but they are my standards, they are what I care about.  It matters to me that this blog is honest, because so often we see M.E. being misrepresented in the press and so often people with M.E. feel that they do not have a voice.  It matters to me that I am true to myself and do no conform to the blogging 'norms' just to fit in.  This means not doing tag posts just because they are popular, and not wearing makeup in my pictures, because I don't actually war makeup in real life.  I don't have anything against these things, they just aren't me.

When I started this blog, one of my biggest concerns was that if I did last more than 3 weeks I would soon run out of things to talk about.  After all once you have explained the illness and the significant hardships, what else is there to write about?  I couldn't have been more wrong, I think of new things to write about almost every day, and if it wasn't for brain fog preventing me from writing, or half of my ideas coming to me in the middle of the night when I am trying to avoid looking at screens, then I think that there would be a lot more content on here.  Currently there is quite a long list of blog posts almost ready to go up, my biggest issue by far is finding the good-brain days to edit them!

Originally I planned to write two blog posts a month and post them every other Wednesday, I kept half of that up! I am pleased that I have averaged about 2 posts per month, it means a lot to me that I reached my target for the year (this is post number 28).  However I quickly realised that I would not be able to keep to a schedule.  M.E. is an illness that is unpredictable and fluctuates from time to time, just as I have good point in they day - I also have good and bad weeks and months.  So a schedule really doesn't work for me.  I have learnt not to worry about anything like that at all!
I have become attached to the things that I have written, I wouldn't want to loose any of it.  All of the posts are backed up, and most of them take weeks or moths to write.  This is because I write about things that I am trying to work out my feelings on.  The writing process is far more important to me than the result.  Often I find that the finished posts seem very simple in hindsight.  I enjoy being able to look back on my journey and see how far I have come.

Over the past few months I have had comments like "you've said what I wan't to say but can't because I don't have the brain energy to organise my thoughts", "I've learnt so much about M.E. from reading your posts" "I really enjoy reading your blog" and "Thank you for telling me that there are other people out there going through the same thing as me... I thought I was alone, I can really relate to what you are saying".  These comment really mean a lot lot me, although I write for myself.  I deliberately decided to put this on a public platform, as I have benefited from reading what other people have written in the past.  Anna's blog in particular expressed my views during a time where I was too unwell to get my own thoughts together.  I am glad to be able to provide the same experience for other people.

In the future I would like to write more about the illness itself, and the stigma that it is surrounded by, as they are both thighs that I care about, they are also things that do not get talked about enough. They are topics that I find quite confusing to write about, so it will take me a long time to get them written in a way that I am happy with!

I love my blog, and I have found it so rewarding to write.  I have met some really lovely people along the way, it is nice to feel a part of something biger than myself.  I couldn't do this without the blogging community, they keep me going when I am having a not-so-good patch, and inspires me by being better that I am. I like to think that together we are building something special.

Anyway, I hope that you have enjoyed my overview of my first year in blogging, and that you have found it interesting to read about my writing process, and my motives for writing.

Tuesday 12 May 2015

M.E. Awareness

As today is international M.E. awareness day, I though that I would share with you some of my favourite awareness videos!

I have had M.E. for 8 years now, and I am so glad that we are beginning to get some good quality videos online.  All off these have been shared in the last few months (with the exception of the Nancy Klimas one), it just shows the progress that the M.E. community have made in recent years! Proud.










Well done if you made it through all of these, I know it as a lot to watch.  Make sue that you like the videos and subscribe to the channels, to show your support!

Wednesday 6 May 2015

What not to say to people with chronic illnesses, and what they wish they could say in response

Not only is May M.E. awareness month, but it is also the month for many other chronic illnesses.  So when better to share a blog post on chronic illnesses.  Since taking an active part in the on line chronic illness community, I have learnt that there are a lot of things us sufferers of chronic illnesses have in common.  Here are some of my top statements/scenarios that really get up the noses of people with chronic illnesses, and my ideal response if I was feeling brave and it was considered socially acceptable.

I'm sure that when you start your new job (course or any other life change) you will be much better

By saying this to me you are indicating that you think my chronic condition is clearly psychological. This is not a phase, it's not depression or even hysteria.  It is a real medical condition that unfortunately won't go away for very long time, if ever.  No matter how many life changes I make it will be one of the few things that is constant. 

I know how you feel… I get tired too

I don't know who started the lie that the only symptom of my chronic condition is fatigue, unfortunately it is not, most chronic illnesses include fatigue as one of their many debilitating symptoms.  Now when we say fatigue and you hear "tiredness" there is a problem.  The exhaustion that comes with a chronic illness is nothing like feeling sleepy, it's lethargic and is very achy.

Do you have an official diagnosed allergy?  There is no medical evidence for food intolerances - When the person has given dietary requirements for an event

I do not have an "official" diagnosis, but that doesn't mean that if I eat certain foods they won't make me feel severely unwell.  Every illness and it's treatment were undiscovered at one point.  Just because the doctors don't formally recognise that avoiding certain foods can alleviate some of my symptoms does not mean that the benefits of doing so are all in my head.  There is no cure or long term treatment for my illness, so for now please respect my choice to eat what I want, as its one of the few things that helps me at the moment.  Also, pleas don't uninvite me to your event just because I am difficult to cater for (yes this actually happens)!  I am very sorry for the inconvenience, and am very aware that it's a pain!

It’s so good to see that you are better now!  - When they attend one function looking healthy

Yes I may be out of the house for a few hours and look and sound relatively normal, however this does not mean that I am cured!  My chronic illness means that I will be unwell for ever, or at least several years.  Please stop asking or assuming that I am better.  Note events x,y and z that I was not able to go to due to illness.  I had to save up my energy for weeks/moths before being able to come to this, and afterwards I will experience payback where my symptoms are worse than normal.  I feel dreadful on the inside, even though I may appear healthy, unfortunately you never get a break from chronic illness. Reminding me of my chronic illness, one one of the few days that I am trying to escape from it is distasteful.  

Have you tried this (insert bogus remedy) its only (£600 for 4 sessions) some people get cured from it

I know that this won't work for me (even though I haven't tried it) because if there was a cure for my condition everyone would know about it by now.  I have tried several alternative therapies, and all that happened was that my bank balance decreased.  Once there is an effective treatment for my condition all of the con artists will go away - you'll see.  I know that you are just trying to help though, so I appreciate the sentiment!

At least you don't have (insert random illness) it could be so much worse… 

There are diseases out there that are more deadly than my own, I am grateful that I don't have one of those.  But my disease has no treatment please acknowledge the reality of that.  I can tell that you are trying to be positive, I like positivity.  However this is sweeping things under the rug, which makes me feel belittled and like I'm not being taken seriously.  I don't think that is is fair to pit illnesses up against each other.  Everyone's individual suffering is unique and cannot be compared, nor does it achieve anything by trying to do so!

One day in the future when we have children (we are married or we are old)...

I like to talk about these things form time to time, but please don't talk about it too much.  They may actually be impossible for people with chronic illnesses.  You have to understand that this is a sensitive subject, and it's probably best not to talk about it unless you know that it’s the right time.  Each chronic illness is different, and affects individuals differently.  How someone is feeling about their future will change throughout the course of their illness and often form day to day, it is very difficult to know how someone else feels about these things.

I hope you feel better soon - After the person has had to cancel going to an event

Thank you for reminding me that I will never recover from this illness.  If I tell you that I'm not going to something and give a non-specific health reason, please assume that it is due to my health problems.  If you know me then you should be aware how much my chronic illness dominates my life.  My illness fluctuates, which means that some days are better than others, I may have been well enough to go to an event recently, but that doesn't mean that I have recovered.  What you have said implies that I can get better from the illness, unfortunately that is not possible.

I know your thinking, well what can I say to people with chronic illnesses?  I have written a blog post about what to say, I'll link it here when it is finished.

Friday 24 April 2015

What I learned from my relapse

Two big realisations have come from my "university relapse".  They are both things that I should have been told right in the beginning when I first became ill.  But that's the problem with M.E, so little is known we have to find everything out for ourselves!

You never truly recover from M.E.

Up until my stint at university I refereed to myself as recovered partly due to wishful thinking, partly because I had been mislead to believe that this was possible.  When I first got ill the children's specialist who saw me (about a year into my illness) told me that most children with M.E. recover.  That was all the hope I had been given, but I have clung on to that hope!  No one had ever told me otherwise, so I believed it, it's only natural to do so!

Every time that I have a relapse - mild or severe.  I take to the internet, to try and research my illness a little more, to see what is out there that wasn't the last time I looked.  This time, there was a lot of information on recovery.  I had never really got my head around the statistics of recovering from M.E.  There always seemed to be conflicting information, and I suppose I wanted to believe that I would truly recover so I didn't think much more about it.  Form my recent reading though it seems that most people will always have M.E. to some extent.  If a person is lucky enough to be unaffected by daily symptoms, then they are just mildly affected.  (We have a big issue with the term recovery in the M.E. community, people interpret it in different ways.)

The repercussions of this are that I need to start living my life and stop waiting for a time when I am fit and healthy.  I have assumed that one day I will get my life back, and have time to relax and soak everything in.  In the mean time working overworking so that my "future healthy self" would have the best life possible.  This type of thinking needs to stop!  Its time to start living for the now, and appreciate life for what it is, rather than waiting for an uncertain future to materialise.  I can do that, I have a nice life, and nice friends and family.

Progress that has been made can be lost overnight  

The second point is perhaps more important, it is that no matter how much I recover I will never reach a safety point.  A point of no-return is fictional with M.E.  Pacing and planning will always have to be a major part of my life, no matter how well I feel.  In other words now I have M.E. and always will do whether my ability is 99% or 1%.

Before I started university, I had a gap year to solely work on improving my health, I made vast improvements over the course of about 15 months and I was loving life.  After being ill for 6 years and being dragged through my "compulsory education" and A-levels I now had time to focus on me.  By the end of the year  I was playing badminton once a week, walking about 3 miles a day and volunteering for 3 or 4 days a week for between 2 and 4 hours.  For the first time since the start of my illness I felt well, strong and positive, even in control of my health.  Every medical professional that I saw as I was trying to decide whether to go to university or not encouraged, even persuaded me to go.  No one ever suggested to me that the recovery I had made could go backwards.  Specialists had always implied that progress was undo-able.

From this I have realised that I need to appreciate my health at the level it is at, and respect the fact that it can improve or worsen with very little warning or adjustment from me.  I should try to do everything that I can to give myself the best chance of a good life, because the future is uncertain.  I know that I can't bank on maintaining my health, no matter how much I have "saved up".


Thursday 16 April 2015

Missing the hills!

I used to go out walking a lot as I child, as a family we were one of these "walking families" every holiday was spent in a tent or a youth hostel somewhere in the UK the last walking holiday we had was to Iceland.

As a child I didn't always appreciate our holidays, it didn't seem cool and I didn't know anyone else who did this.  However as I got older I began to love it more and more.  There is nothing like getting out and about in the fresh air, and it is such a good way to bond with family.  I have many happy memories of playing with my family on camp sites in the evening and reaching breath breaking hilltop views during the day!

When I reached year 10, suddenly walking became "the thing to do" at my school!  Growing up we had the Quantocks right on our doorstep, and Dartmoor not too far away so there were plenty of opportunities to get out there.  A very popular teacher decided to introduce the Ten Tors Challenge to my year group as an extracurricular activity, it created a real buzz around the school.  He set up a boot camp style search to find the ultimate Ten Tors team.  It was the first time that anything like this had ever been done at our school and everyone was very excited.  Over 100 students applied, and there were only 6 places.  This was my chance!  A series of expeditions would be run to narrow down the applicants.  I didn't even mind if I didn't get picked, I just wanted to get out walking with my friends!  I went along to the weekly meetings where we would learn skills such as map reading and how to use our equipment properly, we were also taught survival.  My friends and I watched as our numbers diminished.  First the group was halved, then 10 people were removed at once.  It was brutal.  The teachers who were leading it made a big deal over the competition, and we hadn't even gone on our first walk yet!  My best friend and I planned to go walking to get some extra practice in, we were going to fill our rucksacks and walk along the river to start off with.  At this time my M.E. symptoms begun.  I started to miss more and more time of school, and kept the teachers informed, but they still wanted me in the group.  When it got to the point where I was no longer doing P.E. I spoke to them again, they decided to keep me in for a while in case my health improved.  One of them even tried to help by suggesting supplements to take in the hope that I might improve. Eventually I dropped out once I had missed several weeks of the meetings.



At around about the same time, the Duke of Edinburgh award started for my year group, my Dad had offered to help, and we had begun going for walks together on the Quantock Hills in the evening.  He also went to the weekly evening meetings at school, sometimes leading the sessions with another parent and a member of staff.  (Let me tell you, it's one thing meeting up in school with all your friends in non-school uniform, but it's another when if your dad is there!)  As with almost everything in my life at that time, I eventually had to drop out.  However Dad was already committed, so went ahead and began to lead groups on walks.  Not only was I missing a significant amount of school, but my friends were seeing more of my Dad than me!  The point of this, is that it was something that I wanted to do and had loved but wasn't able to take part in.

When I was at Exeter, once again a lot of people around me seemed to be walkers.  Also at almost any point in the city, you can see the surrounding hills!  Exeter is both a very small, and very hilly city!  Although I was mostly able to get to my lectures, and get to and from the shops.  I relied heavily on public transport and was greatly limited by how far I could walk, it affected me on a day to day basis.  I was trapped!  I had pangs of wanting to get out there and experience the fresh air.

Since I have come home from university, although I have been less mobile and unable to get out on my own.  My parents have been able to take me up to the hills.  We are constantly going up to the Quantoks, we sit and watch the horses and sheep with their lambs during the daytime.  In the night we look for deer on the road, and find clearings where we can get see the stars.  Most notably, my Dad took me for a drive the other night, and we went to the exact spot where we used to do our late night walks.  I couldn't help but think that life had gone full circle.  I wasn't walking, but we were there all the same, and it hadn't changed!  I find it comforting that no matter what happens, some things will always be the same, and nature is one of those things.  One day, I would like to get my walking boots back on, and go out walking in the hills, but for now I am happy being content with visiting nature from my car and staying in the car park, knowing that it will still be there for me if/when I am ready to get walking again!

What do you like to do?


Thursday 9 April 2015

Advice from a friend of a friend

My Dad is a keen cyclist, he spends many weekends out cycling with his friends, often clocking up 30 or 40 miles.  He's a MAMIL if you will (Middle Aged Man in Lycra) and I like to think he's having a merry old time.

Soon after I had to return home from university due to my M.E, my Dad went for a ride.  He got talking to one of his friends whilst lagging at the back of the group, and said "my daughter has just had to return home from university due to her M.E." his racing friend replied "oh I have M.E. you wouldn't know now, but I still have to be careful".  My Dad was so shocked and couldn't believe it.  You may be sceptical yourself, but Dad became convinced after talking to him for a while and I really do think that this man has the same disease as me.  Even though I hardly have the energy to walk around my house and spend most of my time in bed, and he climbs mountains and cycles for 30 or 40 miles at a time.  Mad you may think, but he's not trying to claim there is a secret cure.

There are a few bits of information that he passed on, that have helped both my Dad and me in the last few months.  One is that M.E. is definitely a physical illness, you cannot dictate what you want it to do, how much energy you will have, or pain you will be in.  You must respect it for what it is, and most importantly of all it is absolutely vital to follow the body's lead.  No amount of positive thinking or alternative therapy can help it, you cannot rush recovery, or even know when/if it will happen.  All of these things made me convinced that Simon has the same illness as me, because these are truths that I have come to know in my own life.  It was good to hear them from someone else though, because they are so easily forgotten - if only other people would say them too.

One day I'll get back to the hobbies of a 4 year old me!

The best advice he gave me is that "coping isn't enough" I think that's going to be one of my new mantras now.  For so many years I have coped, and people have said oh how well you are doing, you are coping... but if you are just surviving, just getting by you are not living, and most of all not going to recover.

All health is fragile, and shouldn't be taken advantage of, our society idolises the idea of pushing our bodies to their limits and living life to the full, seeking the thrill.  This is not helpful to those who suffer from M.E. or any other chronic illness to that matter.  The key is pacing, avoiding toxins e.g. food intolerances, and lots and lots of rest.

My Dad says that come to think of it, his friend does often have days off from work and misses cycle rides due to being unwell.  This shows that even though he has got to the point where he can climb mountains, Simon still has to keep his health in check.  He is by no-means fully recovered, but has got to the point where he can manage his health, and has a pretty good quality of life.

It is important to remember that not all M.E. behaves the same, some people find that their health deteriorates no matter what they do, and others cannot improve.  However for those of us who do find that we are able to build on our health with rest and pacing, here is a smidgen of hope!  For more on what I've written about M.E. see here.

Monday 16 March 2015

M.E. Awareness, and the progress that has been made

A post about the progress that the M.E. community has made in recent years, with regards to awareness, education and expression of the illness.


Last year M.E. and Fibromyalgia awareness really seemed to kick off!  Every year on May the 12th my Facebook feed is filled with posts and comments in order to raise awareness of M.E.  However last year was the first time that any of my non-M.E. friends also got involved.  Even better, they weren't doing it because they knew me.  They were doing it because they had other friends who were raising awareness of the illness.  This was the first time that I could legitimately say that I had been reached by M.E. advocacy, outside of my own connection to the illness.  To me this was a real sign of change, and a moment that I know I will never forget!

Obviously a lot more needs to be done to change the public's perception of the illness.  There is still a huge amount of injustice and misunderstanding.  This post is not about softening the harsh reality that is living with a largely unrecognised debilitating illness.  But as someone who has suffered with this illness for a while, I have noticed a small change in the way that people talk to me, (my university were fabulous) and a very small slow change in the way that these things are represented in the media.  Which doesn't mean a diminishment of derogatory articles, but dose mean an increase in media publicising the genuine existence of this disease.

Take for example the sale of books discussing M.E.  When I first became unwell in 2007 naturally myself and my family took to Amazon to try and find books to help us out and provide insight.  There were very few available, and some were seriously dodgy! e.g. bogus remedies and theories written in the 80's!  Now I log onto Amazon and search "myalgic encephalomyelitis" or "ME/CFS" and a whole list is available, the majority written in the last few years, with a huge number written in 2012,13 and 14.  The tide is turning!  This is amazing and something that we need to celebrate in the M.E. community.  I can only be thankful for the incredible progress that has been made in the last 7 years, and of course am proud to say that I have personally known some of the people who have been involved in this!

For those newer to the illness it may seem frustrating that so little is known, and that the public are so ignorant.  It was ridiculous 5-10 years ago when I was first ill, and unimaginable 20 years ago.  We are going through a real time of change and I believe that now, and in the next few years the groundwork is being laid for spectacular change.

The M.E. community is quick to jump on rogue media articles, and false research claims - and rightly so.  However I have noticed that the community are less eager to celebrate positive media and research.  I know that this is due to the fighting spirit that so many of us have.  The same spirit that has go us to where we are; with very little help from others and a lot of bad press to our name.  But it is also good to take stock, and appreciate everything that has been achieved over the past few years.

There are so may positive campaigns these days.  Another thing that stood out to me last year was the Twibbon campaign (where people attached a blue ribbon to their facebook/twitter profile pictures to raise awareness and show support for the condition).  The uptake was relatively small compared to other awareness days.  However this was the first year that there had been a successful social media campaign for M.E! ...I know it will be even bigger next year.  I really do feel that as a community we are beginning to get organised and act as one.  In previous years there have been many conflicting campaigns with different images and a poor uptake.

 With the rise of organisations like Let's do it for ME! and projects such as the independent film Canary in a Coal Mine things are beginning to move along.  Now there is a place for those who want to support the cause to come together.  Something that has never happened before and has been long overdue.  It is a exciting time to have this illness - if I can even go as far as saying that!  It will be even more exciting once we have a cure, or even biological test!  I am at least beginning to be able to imagine this happening  now.  The first step is allowing the community to gain momentum, and interest/support from those who are not affected.    Never has  M.E. awareness been so thought out.  I know that there is still a long way to go, but we are getting there, our future is brighter than our past.

The plans for this years M.E. awareness week are already being put into place.  I'm confident that yet again this year there will be more media coverage than ever before, and that much more people will engage on social media.  It is a given that more money will be raised than ever before, and rightly so!  I'm still riding high on the success of last year!  Will you be doing anything this year to make M.E. awareness week better than ever? 

MEAW 2015: 11th-17th May

Friday 13 March 2015

What is M.E? Over worked, lazy or neither?

I have heard it said before that people who just get on with things, people who have 'get up and go' are more likely to get M.E.

...I have also heard it said that people who have M.E. just need to try harder.
  
Is there any truth in either of these points of view and, if so, which one?


The thought process behind the 'get up and go' mentality being a predisposing factor for M.E. is along the lines of this: That often M.E. is caused by a viral infection that never goes away; the early stage of which is called post viral fatigue syndrome (PVFS) - where the body has symptoms of M.E. including extreme fatigue that is not lessened by rest, unrefreshing sleep, post external malaise and symptoms of viral infection.  If this does not clear up after 6 months, very often the patient will be diagnosed with M.E.   There is evidence to suggest that getting sufficient rest during the post viral stage will decrease the chance of developing M.E.  Therefore it is thought that people who have a 'get up and go' attitude are more susceptible to getting M.E.

M.E. is a little known disease, many doctors have not heard of it.  A very limited amount of education is given to patients about the need to rest after a substantial viral infection, and the individual's interpretation of 'adequate rest' will vary.

M.E. can also develop from less noticeable viral infections.  I don't know when I had Glandular fever, but I tested positively for it when I was having my blood work done for my M.E. symptoms.  I often felt well enough to go back to school and thought that I had recovered.  The nature of M.E. is that it causes payback (extreme fatigue etc...) to appear many hours, even days after exertion; the patient does not know that they are doing the damage until it has already been done.  Due to a lack of awareness among medical professionals, patients are often encouraged to go back to work far too soon.  It is often considered that 2 weeks off work is a sufficient amount of time for a patient to recover from PVFS.  Whereas in actual fact they would be better off taking 6 months off!  To a hard working (formerly healthy) mind the idea of taking 2 weeks off work may seem like overkill, extravagant even. Little do they know that this is only a tiny step in the right direction.

The only known way to improve M.E. symptoms is to rest, and avoid overexertion.  The level of activity that will cause symptoms of payback varies from person to person and will change with time.

You cannot snap out of M.E!  Believe me, I've tried! Unfortunately exercise only exacerbates it - a lesson that I have taught myself time and time again, culminating in my recent return from university. This time I was overdoing it on a long-term scale, living too far away from the university campus. The pay back built up a little each day, and eventually resulted in a relapse.

Because of this, and other examples, obviously I do think that that the 'get up and go' mindset can exacerbate M.E. It causes relapses and worsening of symptoms, and therefore draws out the recovery time (if full recovery is even possible - a debate for another day).   However if one person with M.E. has better health than another, it does not mean that the other person has necessarily done anything wrong.  Similarly some people find that their condition improves as time goes on, while others see no change or decline no matter what they try.  The severity of M.E. varies, and affects each person differently.  By far the most important factor in maintaining the general health of someone who has M.E. is to have good energy management, the antithesis of a 'get up and go' mentality!

I do not believe that a state of mind or attitude can cause M.E; there is something deeper going on here in the body, affecting both the immune system and the neurological system.  In turn this affects the hormones, and ultimately other systems and organs and within the body.


It is sad that the most common piece of advice given to people with M.E. is to 'just get on with it', exactly the thing that makes M.E. worse!  Sadly a lot of M.E. patients do not know this, and they will try and endeavor to 'beat' M.E. by sheer force and exercise.  Most GPs are still advocates for the same advice.  Unfortunately the NHS (NICE) guidelines still say that M.E. may have a psychological cause. The official NHS practice is to offer CBT counselling, and Graded Exercise Therapy - in my experience this is basically forcing your body to do more and more until you have a relapse, and have to drop out of the programme, then no one bats an eyelid and pretends that you are the only one who this hasn't worked for. (In America the definition has recently been changed to being non-psychological though, so there is hope!)  Most GP's offer antidepressants once all other options have been exhausted.  I of course do not take them. If you know me in real life, you will hopefully realise that I am far from depressed… remarkably!

M.E. has many other modes of onset other than following viral infection.  It can also be caused by exposure to chemicals and toxins, trauma, major surgery, slow onset (no apparent cause) or occurs during a time of hormonal change such as menopause.  It has so far been found in adults, teenagers and children as young as 2.  M.E. affects more women than men, the true ratio is unknown, but it is something close to 3:1.  A gender ratio such as this is common in immunological illness (M.S. being the most well-known example).  This is because female and male immune systems differ slightly, and so respond to stress differently.  For more information see ME Association or Action for ME.

One thing is for certain, and that's that M.E. is not just being lazy!  It's not a choice, mental health problem or product of burnout.  It's a real biological illness, with many possible triggers, and an incredibly complicated multi system biological mechanism (which we unfortunately do not yet understand).

What do you think about this?  Do you have any experience of M.E?

Monday 23 February 2015

Blog news, and a health update

I've had a rebrand!  This is something that's been in the works for a long time.  Since I've been off ill from university, it's given me the time and (brain energy to) put the changes into place.  Some of you may have noticed them already, as it's something that I've had to do over a few weeks.  There was quite a lot of work to do!

This is a post just to say that, I'm still here, and that this account is still me.  I'd also like to talk a little bit about the processes of redesigning, where to find me on social media, and there is a health update at the bottom.

It's been so much fun redesigning everything, and when I say redesigning I really mean designing, because there wasn't much there to start with!  The blog is by no means finished, it's still a work in progress.  However I've found the style that I want to go for, and have got to a point where I'm happy with the way it looks.  It turns out that web design incorporates two of my favourite things, being creative and scientific precision (that half degree did come in handy after all!)  I'm sure that the look of the blog will change and evolve as time goes on, just as I will.

I decided on the tree theme, because to me they represent life, and after all that's what this blog is about.  Life that is still beautiful and prosperous even if it is one lived with an illness.  They also remind me of growth and stability, which are two things that I aspire for this blog to represent.   As soon as I made the cluster of trees, I knew that they were what I wanted as my logo.  I love trees and the outdoors in general, so it's a great way to reflect my personality.

Contact and social media

Along with redesigning my blog, I have also set up a gmail account for you to email me.  Feel free to email me at jennyhelenemail@gmail.com for questions, collaboration ideas and chat!

As of yesterday I'm on twitter, tweet me @jennyhelenblog!  I'm a complete novice though, so bear with me if I take a while to get back to you!  I'm looking for some people to follow though so definitely hit me up on there!

I also now have instagram (see feed in sidebar) I will be posting pictures of the things I get up to, as well as promoting this blog and generally being part of the spoonie community!  You can find me at @jennyhelen_, if you have an instagram account leave your link in the comment section.








Update

I just thought I would give a little health and uni update, as my last blog post was a bit open-ended on that front.  I have decided to have a break from uni for at least a year.  This week we started the paperwork for an "interruption" which means that I will be able to rejoin my studies from where I left off, and won't have to restart the year again.  My health has been slowly improving since I have been at home, I am in much less pain and am able to do more.  We have also been experimenting with my sleeping medication which has worked wonders so far!  Sleep had become a real problem as my health declined, lets home the improvements stay! 



Comments

I've decided to start using Disqus for the comments, I hop this is ok!  I really like Disqus because if you have an account, you will get a notification when someone replies to your comment.

I'd just like to say a huge thank you for all of the support that I received on my last post, it has meant a lot to me.  I've been really enjoying reading the comment section, so please do leave them.