How can others understand if we don’t understand each other?

Sadly I’ve noticed that there is often a lack of understanding and empathy within the M.E community for others who are at a different level on severity scales for M.E. Over the years I’ve heard so many people who are severely affected complain about what they’ve read within general M.E groups. That they are sick of listening to people complain about how awful they feel or exhausted they are after a day out or weekend away. People saying that those mildly affected don’t know or understand how severe ME can be. Giving out that anyone with mild ME should count themselves lucky that they can get out and do things and should think about those of us who are severely affected, how our lives are and what we can’t do! Do we as severely affected patients ever stop to think about someone with mild/moderate ME and how their lives are affected?

I’m severely affected with ME, I know and fully understand that it can be hard and often upsetting when hearing about things people have done or have enjoyed that you can no longer do yourself. Seeing posts and pictures of others with ME enjoying a fab break away when my biggest achievement that day may have been managing to get out of bed long enough for the bedding to be changed. I’m always glad to see such posts but at times it highlights the reality of my situation and the things I can no longer do now. I think this is the same for others within the severe category.

I think we need to try to understand each other within the M.E community and what life is like for those who fall into different categories instead of judging and criticizing – we all get far to much judgment and criticism of us and our illness from elsewhere! Also if some people mildly affected don’t realise how severe ME can be why don’t those of us severely affected tell them? As an M.E community we all want increased awareness and understanding. Those who are mildly/moderately affected are the people who are out in the community, if they have an understanding about the lives of those severely affected they can tell others how severe the condition can be when talking about their own M.E.

People with mild M.E don’t experience the same severity of symptoms and problems as those with severe M.E however that doesn’t mean their lives aren’t severely affected by their M.E! When someone is moderately affected and may use a walking aid or wheelchair it’s obvious to others who see them that they have problems and recognised that they aren’t able to do the same things as those who are well. However people with mild M.E look fine to others when they aren’t. People who don’t understand the illness expect those mildly affected to keep up, not miss nights out, family engagements etc  Anyone with mild M.E is suffering greatly, they can often take part in things with friends, manage to work or do ‘normal’ activities that others in their lives enjoy but suffer later for it – however their symptoms are often dismissed and  unrealistic expectations are put upon them by others who don’t understand M.E.

Today I write this from a hospital bed, I know that tomorrow and the days following I’m going to be lying in this hospital bed. I hope that my health improves so that I will be out of bed but at the minute I can predict I’ll spend the immediate future in bed. Having become used to life in bed this is easy now to accept. Many people with mild/moderate M.E live in a push crash cycle where they do as much as they can when able and keep pushing their bodies to do more which then leads to an inevitable crash. They then find themselves in bed suffering with post exertional malaise and with major payback from their activities and the fact that they pushed themselves beyond what their body could easily manage.

I remember when I pushed my body like that and how the crashes felt, going from almost feeling like you had a semi normal life to suddenly feeling completely deflated being stuck in bed again with no idea of how long this crash will last. When people with mild/moderate M.E crash and are faced with uncertainty of when the crash will end, being stuck in bed can be very difficult to accept. Their level of ability can fluctuate from one extreme to the other unlike someone severely affected who has fluctuating symptoms but pretty much knows how they will be overall in the immediate future.

So for anyone who is severely affected and does complain about how lucky those with mild M.E are and how they should be grateful for what they can do and not complain after a hard day at work or when exhausted after a day out. Try to put yourself in their position or remember a time when you were. Did you feel lucky and grateful that you were able to do things when you had payback and felt so alone because no one understands and puts pressure on you to do things you can’t? If you constantly had periods of being able to do things hoping your health was improving only to get shot down again and again when the inevitable crashes come would you feel happy that you could do things? Or frustrated that there was such hope and then total uncertainty? Did you know then how severe M.E can become? When so few people in the lives of those with M.E understand or appreciate how hard this illness can be at any level – is it not understandable that when suffering from doing something people come to groups online to talk about how they feel with others who understand? When I was able to do things and existed by pushing myself I was aware of how severe M.E could be and even now, classed as profoundly affected appreciate that my health and quality of life could be much worse!

If we want more awareness and understanding of M.E within the medical profession, family and friends, the media and general public – I think a good place to start would be within our own M.E community!

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Accepting Chronic Illness, not giving in – just accepting that life will be different!

Accepting a chronic illness or two as was my case with M.E and Fibromyalgia isn’t easy, for many it can be completely overwhelming. Of course it doesn’t help that half of the medical profession, family members and friends don’t believe that the conditions exist in the first place or think that they are ‘all in your head’! In many cases the people who you would have assumed would be there to help and support you should you ever become ill aren’t there for you and are often dismissive of the fact that you are ill or that there’s actually anything wrong with you at all.

I found that accepting chronic illness is like going through the various stages of grief in no particular order and often jumping from one stage to another; shock, anger, denial, sadness, pain, feelings of helplessness, isolation, loneliness, and acceptance.

It makes sense with these illnesses that you go through similar feelings to those of someone grieving because you are grieving. Grieving for the person you wanted to be and life you wanted to lead but can’t, feeling frustrated with yourself and the illness, angry and helpless because there’s nothing that you can do to change things and this is not how you want things to be. Feeling alone and isolated because no one can help and no one in your life understands how you’re feeling!

I think there’s a similar path to acceptance for others in your life, whether it’s your husband, partner, parents, kids etc. They are grieving too in a way, for what they have lost and trying to come to terms with how things are now and how the future and plans made will change because of the illness.

It takes time to come to terms with things and you need to give yourself the time you need to let yourself work through things and get your head around it all. It helps that there are plenty of online groups on Facebook with hundreds of people who understand what you are going through because they’ve been there themselves! There are also plenty of organisations with information and support.

I found and still do that guilt plays a major role, guilt about what I can’t do, what I ‘should’ be able to do, guilt from other people about what I ‘should’ be doing. I learnt over time that nearly everyone will have an opinion on what you ‘should’ be doing but just as you do, they need to learn to accept that you are ill. Accept that you aren’t doing things because you can’t and not because you don’t want to. Realise that giving yourself a hard time for things that are beyond your control (or others doing that to you) isn’t going to help you at all – in fact it will do the opposite and make everything harder!

Everyone reaches acceptance about illnesses at different times and like I mentioned above can go through various parts of the cycle repeatedly. I think it’s important to remember that your loved ones are also going through a process towards acceptance and you may not all get there at the same time!

Just as there are groups for people with M.E and Fibromyalgia, there are groups and organisations for partners, carers and family of those with the illnesses where people will understand what they are going through too.

The best thing that you can do is try to build a support network, whether that’s family, friends, groups online – just people that will be there when you need them! Find things that help you cope when you feel like you can’t and that will help you to relax, a favourite show, audio books, meditation, doing crafts…whatever works for you. Trying to limit the negativity and stress in your life also helps, the people who insisted I wasn’t ill no matter what myself,doctors or anyone else said are no longer in my life.

For a long time I thought that admitting I was ill, admitting that there were things I could no longer do or needed help with was like giving up or giving in to the illness and letting it beat me. It’s not giving up at all – just accepting that life isn’t going to go the way you’d originally planned. You won’t necessarily be able to do the things that you had intended but it doesn’t mean that you’re giving up, quite the opposite in fact – you’re just moving on and finding another way to live your life. A way forward that works for you and works with your illness, finding ways to adapt, setting new goals and finding other ways to accomplish some of the things you’d set out to do in the first place!

Your life isn’t over because you’ve got a chronic illness  – it’s just gonna be different!

Getting an M.E Diagnosis…..and how others react!

So you’ve been feeling as if things are not right for some time, you know that there’s something wrong with you. You’ve been experiencing a host of numerous and seemingly random symptoms. Obviously lots of different scenarios and possibilities are running through your head. (Which doesn’t really help matters at all!) Finally you make an appointment with the doctor to discuss what has been going on and talk about all the symptoms you have noticed. The doctor records what you’ve said and tells you that they will do some tests to see what is going on.

You wait patiently as you get blood tests done and are sent for an MRI – basically all the tests they do to rule out various possible conditions and illnesses. You’ve waited for the results to come back to the surgery and to see the doctor again, hoping that it’s nothing serious, but if it is – that it’s something treatable! The doctor sits you down and tells you that all of your tests and scans have come back clear, luckily you don’t have anything fatal  – you have M.E. M.E? Yes, we’ve ruled out any other conditions or illnesses with the various tests and scans and I can confirm that your diagnosis is M.E!

I felt a short burst of relief when I heard it, it’s not a terminal illness, I’ve not got 6 months left to live, the doctor knows what it is. Thankfully I now finally have an answer to what has been going on with my body for all this time, all of these symptoms now make sense. I don’t know about others but I grew up as a child with the false ideas that adults knew all the answers (well, you have to learn as you grow up so surely you know everything when you’re old?) and doctors know all about illness and how to cure them or at least treat them! Sadly, where M.E is concerned most doctors don’t know all about it, many know very little about it, some know nothing about it, others deny it’s existence completely and they definitely don’t know how to cure or treat it!

My G.P told me that he had no information on M.E but the best thing that I could do was to go home and Google it. A strange thing to hear from a doctor. because they generally give out about patients using the internet to search for medical problems – I think many people look up one symptom they actually have and then come to see the doctor armed with a list of about 10 conditions that they think they possibly could have!

When most people hear M.E they recognise the name, I remember as a child hearing about M.E and the words ‘yuppie flu’. Used widely in the 80’s and having been born in 82 it was a term I’d heard quite a few times. I’ve a vague memory of seeing something on t.v about it as a young child and thinking it was when people who worked got really tired. So I wasn’t starting off with any real knowledge about it at all.

I did as the doctor suggested and looked it up online. It helped, as there were lots of things that had been happening over time that I’d not paid much attention to or would have even thought of that suddenly made sense. Products I’d become sensitive to, why I was especially tired after activity, problems finding words, problems with memory, always feeling like I was really low on iron. There seemed to be lots to explain symptoms of M.E, but nothing to cure it. I looked into the history of M.E a bit, wondering how people could feel so awful, with so many symptoms and have it compared to flu? Apart from that, my research at that stage pretty much stopped there.

I tried to explain to family and friends that I’d had on going symptoms for a while,  I’d been through various tests and scans to see what was causing all the symptoms and finally got a diagnosis. People asked what type of symptoms I’d had? I explained I was always exhausted, rest/sleep didn’t make any difference, I’d a lot of pain, headaches. Several people said it sounded awful and asked me what the doctor had said? I explained to them that I had a diagnosis of M.E. I was surprised at how many people came out with similar responses. “M.E? That’s that yuppie flu thing.” “So your just tired?” “That’s not a real condition.”

I wrongly assumed that like myself they had just heard and understood little about M.E and like myself, if they found out some information about it, they would understand what it is and how the illness affects people. I tried to explain that M.E is a neurological disorder and has been classified as such by the World Health Organisation since 1969, it’s not a case of ‘just being tired’. It causes extreme fatigue, problems with memory and concentration, causes pain, problems with muscles, affects your bladder and bowels etc Well, I may as well have been speaking to myself. No matter what was said by me, the World Health Organisation, the NHS, GP etc – there was nothing wrong with me. From then on my neurological disorder M.E was referred to as ‘aches and pains’! I made several more attempts over time to help them understand but my efforts were wasted and I was regularly asked; “How are the aches and pains today?”

Realising that there was no cure, I had went back to the doctor’s surgery and saw several doctors over a period of time hoping that they could help me manage the pain and improve other symptoms I had. I was in my early 20’s with a young baby, I wanted my life back. The amount of insults, comments and disbelief that I received from various doctors about a medical condition I had been diagnosed with was absolutely shocking!

“There’s nothing wrong with you that getting a bit of exercise wouldn’t cure” “You’re depressed, a good anti-depressant and you’ll be fine” “As long as I’m a doctor – you’ll be in pain” “You’re lying about doing nothing instead of getting up, going out and living your life” “M.E? there’s no such thing”

Everything that the doctors were saying to me was wrong. I was active and independent, to the point I’d bust my C-section open 4 days after my baby was born because I didn’t take doctors advice and not over do things after having major surgery. I was back working within mental health within a few weeks of having my baby. I was studying counselling at the local college and had started a psychology degree online as well as playing in a band. When I couldn’t sleep I’d spend hours on the dance mat, trying to loose the baby weight waiting for my wee boy to wake up for his feed at night. It definitely wasn’t a case of me lying about doing nothing! As for being depressed, what could I possibly be depressed about? I’d the most beautiful baby boy, my plans for work a career and a good future for us both were taking shape. Everything I wanted was falling into place – the only problem I had was the M.E which was impacting more on my life as time went on and making it harder for me to live my life the way I wanted.

I decided to go back to the GP who had initially diagnosed the M.E. I spoke to him about the problems I was having and the fact that I wanted my life back. He was very honest and said that he couldn’t treat my M.E but he would do everything that he possibly could to help manage the symptoms. I’d also told him that I was having an awful lot of pain and using my arms to try to do a simple task like drying my hair left me feeling like I’d pulled and strained every muscle in my arms. He did a lot of poking and prodding at various tender points on my body, asked a series of questions and then told me that he was also diagnosing me with Fibromyalgia. When I asked what it was, he told me that it affects  the muscles and caused other problems but like M.E it was not terminal and not curable. That it would be dealt with in the same way as M.E – by trying to help manage the symptoms. So off I went with a vast collection of new medications to get on with my life!

What M.E is, and what it’s not!

  • M,E (Myalgic Encephalomyelitis) is a neurological disorder and has been classified as this by the World Health Organisation since 1969. Myalgic Encephalomyelitis translated means inflammation of the brain and spinal cord. M.E can affect people of all ages. M.E in the UK and in other places around the world is also referred to as CFS (Chronic Fatigue Syndrome) or M.E/CFS although most people with the condition don’t like the term CFS as it implies that M.E is just fatigue and it’s much, much more than that.

    Currently there is no diagnostic test for M.E and getting a diagnosis usually involves tests and scans to rule out other conditions. There is also no treatment or cure for this illness. M.E isn’t the same for everyone, people can have mild, moderate or severe M.E. It’s estimated that 25% of people with M.E are severely affected often leaving them housebound or bedbound.

    Sadly many people have little to no knowledge about the illness which sadly includes many medical professionals! A lot of people remember it being referred to as ‘yuppie flu’ and think that having M.E means that you’re just a bit tired. Others refuse to believe that the illness exists at all. Many people with M,E face a lot of judgement and disbelief by family, friends and professionals within the medical community.

    M.E affects every bodily system and symptoms can include;

  • fatigue
  • cognitive dysfunction (often referred to as brain fog),
  • problems with concentration
  • memory problems
  • Post Exertional Malaise (a worsening of symptoms after activity)
  • Sensitivities to noise, light and chemicals
  • problems with bladder and bowels
  • muscle pain, muscle spasms and involuntary twitching and jerking
  • sore throat
  • sore and swollen glands
  • confusion
  • nausea
  • dizziness
  • problems with being upright
  • difficulties with eating and swallowing
  • muscle weakness
  • sleep problems; difficulty getting to sleep, refreshing sleep, sleeping for excessive amounts of time, unusual sleep patterns
  • paralysis

There are literally something like 60 known symptoms that people with M.E can experience so I’ll not list them all or you’ll  be thoroughly bored and most likely falling asleep!

Some quotes on M.E;

”ME/CFS is actually more debilitating than most other Medical problems in the world, including Patients undergoing Chemotherapy and HIV Patients (until about two weeks before death.)”  Canadian ME/CFS Consensus

“Research has shown that M.E. has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or haemodialysis. It is comparable to end-stage AIDS, i.e. to how ill and disabled an AIDS patient is 2 weeks before death.” Hooper and Marshall

Sadly many people have had breakdowns in relationships with family and friends due to  lack of understanding, misconceptions and disbelief of the illness so have little/no support. My own family describe my debilitating neurological illness as “aches and pains”.

M.E is not tiredness, it’s not depression, people who are affected by the illness are not just lazy, it’s not a case that we don’t do things that we used to because we couldn’t be bothered – we can’t do them because we are ill and our bodies aren’t capable of doing what they used to!

People with M.E often hear the same comments from people over and over again; ‘you don’t look sick’ ‘you just need to get more exercise’ ‘you’re so lucky not having to work, being able to lye in bed etc’ ‘just push through it and try to get on with things’ ‘have you tried………?’

We may not look sick but we are, it’s an invisible illness so we can look fine but feel awful. Getting more exercise is not what we need, in fact exercising would actually make us feel worse. We don’t work because we can’t and it’s not exactly like we’re having a great time because our days are free without having a job! Lying in bed all day is not something we want, we have numerous horrible symptoms, extreme fatigue and need to rest – a day off and lying in bed might be nice for someone who is healthy but it’s not as if we’re lying relaxing, we are in bed feeling horrible. And yes if you have heard that x,y or z helps with M.E it’s more than likely that we’ve heard it too and probably tried it as well as other numerous ‘treatments’ and ‘cures’ that don’t work!

People with M.E have very limited energy and can get exhausted easily. It’s human nature to want to push yourself and get on with things which the majority of people with M.E do, but this only makes our symptoms worse and often can cause relapses or progression of the disease. The only way that people with M.E can keep their health at a stable level or have an improvement in health is by pacing ourselves, balancing activity with rest, not pushing our bodies to do what it can’t easily manage and getting proper rest and plenty of it!