Learning the hard way; In order to do more - we often have to learn to do less!

It's natural the people want to fight an illness, push themselves to do more, be determined not to give in to the illness - it's human nature. With the majority of illnesses and conditions the determination and desire to carry on regardless doesn't pose any problems, it actually helps. With M.E things are very different - I learnt this the hard way!

For years I didn't realise I had M.E, when I was really young I was taken to doctors with severe headaches, episodes of blurred and double vision and dizziness. I was thought to be making it up, my mum continued to bring me to different doctors saying a child at 4 or 5 doesn't know about the symptoms I was describing. Eventually at 6 or 7 I was diagnosed with childhood migraines. At 8 I was in a car crash, our car was a total write off. Then at 14 I was diagnosed with a condition in my knees were the bone scrapes against the knee cap rather than gliding along cartilage. I started having back pain prior to my teens.

So up until I was 20 I never realised that there was another problem. I'd always just thought that the pain I felt was from the car crash, knew I'd migraines and ignored the extreme tiredness and any other symptoms I felt. I'd been called lazy in primary school which sort of stuck with me - so when walking home from school and wanting to lye down on the ground or pretending to be sick at school so I could go to a bed in the sick room and sleep all day, I just thought it was laziness. I managed to just get on with things though.

 When I did get a diagnosis of Fibromyalgia and M.E in my early 20's my family didn't believe it existed or thought that it was "just tiredness" and "aches and pains". For years then I lived in a push - crash cycle pushing my body to do more than it was capable of doing and then crashing completely afterwards, not knowing the detrimental affect that it was having or would have on my health.

Although trying to explain my M.E, people didn't understand or I was told it was all in my head, so it was easier to hide it and if asked how my 'aches and pains' were I'd say I was fine. I had a young child then and pushing my body was the only way I was able to do things, trying to push past the complete exhaustion,  pain, muscle spasms, migraines and other symptoms.

To the majority of people I seemed ok, I was using crutches at the time but managed to get to the doctor, visit relatives or have a family day out. The saying that 'no one really knows what goes on behind closed doors' is very true. No one realised that after a visit to family, shops or a day out that my body would crash completely.

My body would generally crash the day after I'd been out. When my body crashes I can sleep constantly, anything from 18-23 hours at a time, only waking to use the toilet, take a drink and then back to sleep for a similar amount of time. This usually lasted 2-3 days then, other crashes lasted weeks.

It's hard for someone who doesn't have M.E to understand what a crash feels like. It's like being tortured, I would be in agony but unable to wake up to take painkillers - often unable to be woken at all or if I was woken to eat, I'd fall back to sleep with food still in my mouth. My symptoms were worse when I crashed, increased pain, muscle spasms and muscles twitching and jerking, migraines etc.

 I would need to get to the toilet and be trying to wake myself up but my body was so exhausted I couldn't waken. Many times I'd try to wake myself up enough so I could get up - feeling guilty because I wasn't spending time with my son but my body had just shut down. When sleeping constantly like that you loose all track of time. I would be awake briefly at times when my son or fiancé came in but later have no memory of conversations they had with me as my body was so exhausted my brain wasn't able to function properly.

Gradually I'd come out of the crash and go out again to visit people, to shops etc - 'normal' life had resumed and people just assumed I was doing other things in the time they hadn't seen me. I wanted to look after my granny when she was ill although I wasn't physically well enough to do so. Granny was an amazing, kind and caring lady, she was more like a Mum to me than a Granny and had spent years looking after me so it was a privilege to be able to look after her when she needed it.

For months I helped granny with personal care while my fiancé did the things I was no longer able to do, cook dinner, make lunch and cups of tea, light the fire. I didn't know it at the time but my body was running on adrenaline in order to be able to help granny. I crashed on the days someone else was with granny and slept constantly. Over time things got harder and symptoms worse, I'd have to sleep on the sofa and have my fiancé wake my when I needed to take granny to the toilet.

Granny had a fall and was sent to hospital, she later when into a nursing home. Once I stopped looking after Granny the impact of pushing my body beyond what it was capable of for so long became evident, I had a relapse and was in bed for 4 1/2 months. I slept almost constantly through out this time, my throat was so sore I lived on milkshakes with ice cream loosing 2 1/2 stone.

My health had declined, symptoms became worse and new symptoms appeared. I started to experience paralysis with loss of speech. Numbness and loss of feeling in my arms and legs became more frequent. It was during that time I got a hospital bed and when my body got stronger and I was able to be out of bed it was from then on I needed to use a wheelchair.

I didn't know then about pacing with M.E, that I should have been alternating activity with rest. I'd not looked into M.E too much online and didn't know that with M.E - any activity that the body cannot easily tolerate can cause a worsening of symptoms, relapses and disease progression. So with my new wheelchair, although my M.E was worse I continued to live in a push-crash cycle - although the crashes were worse and longer.

I'd try to be out of bed for a few hours or do something but then end up back in bed. I pushed myself again to do things, have a family day out but then would sleep constantly for days or weeks at a time. I felt so guilty, I was missing out on my sons life. I was told by others that I needed to do more, get up out of bed - I couldn't, my fiancé knew I couldn't but people telling me I needed to do  more only increased the guilt I already had. At that stage because my health had got worse, I couldn't push my body the way I used to so the smallest activity made things worse - yet determined not to let the illness beat me I pushed myself to do things as often as I could.

My family hadn't understood I was ill to begin with so couldn't understand why I needed a wheelchair. I spent the majority of my time lying in a darkened room unable to do anything. When someone came over - if I was able I'd push myself to get up and appear 'normal', when I couldn't I was told that if I wanted to get better I needed to start exercising and stop spending all day lying in bed.

At that stage I still tried to push myself, tried to have a bath or shower when I wasn't able. Feeling guilty for not spending time with my son if I could get out of bed, no matter how exhausted I was or how bad my symptoms were I wanted to do something as a family - which inevitable ended up with more time in bed sleeping with increased symptoms.

We had decided not to have anymore children due to my health but I fell pregnant after an antibiotic interfered with the pill I was taking. Two doctors advised that I should consider having an abortion here on medical grounds - I refused. I had to stay on strong medication throughout pregnancy and thankfully our son didn't have any major affects when withdrawing from the medication.

My health has deteriorated further and I'm now bedbound with full time carers. I have communication sheets for when I wake up with paralysis unable to speak. I've problems with eating due to choking so live on meal replacement drinks. The only time I leave the house is for medical appointments, if they can't come to me. Due to orthostatic intolerance getting worse any outings for appointments are while lying flat on an stretcher taken by ambulance.

The old wheelchair I had is no longer suitable, I can't sit upright and don't have the strength to self propel any more. I'm waiting on a specialised tilt and recline chair and hope to be able to get out of bed again and spend time with my family. I want to be able to watch my kids play. My youngest son will be 2 in a few weeks and all he has ever known is mummy in a hospital bed in a dark room. I've never seen him on a swing or slide in the play park, my eldest son has had several hip hop shows with solos and learnt to swim, all of which I have missed.

Some people with M.E have their health deteriorate no matter how well they rest or pace themselves. For me, my health has got worse largely in part because I pushed myself to do to much and lived in a push crash cycle for so long. My determination to carry on regardless and not to let the illness beat me has resulted in me loosing any independence that I once had - being now completely reliant on other people for everything.

I know now that in order to be able to do more, we often have to learn to do less. M.E is different from other illnesses, trying to push yourself and get on with things no matter how bad you feel makes you worse. Giving yourself a hard time about things you can't do or listening to others who don't understand and tell you that you 'should' and 'need' to do more makes things worse as you are then feeling guilty and unable to rest properly.

I've met a lot of people with different severities of M.E, the only thing that I've heard that helps with M.E is pacing. Learning to balance activity with rest and not pushing your body to do things that it can't easily manage. Listening to your body and resting when you need to and trying not to pay attention to the people who tell you that you 'should' do more when your body isn't capable of doing so.

When my new wheelchair comes, I now know and have learnt that the only way I'll manage to be able to do more overall is by accepting that at times when my body is struggling - I need to do less!

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

Accepting any chronic illness (or a few, as was my case with M.E , Fibromyalgia and PO.T.S) 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 often don't believe that the conditions exist in the first place or think that it's 'all in your head'! 

In many cases the people 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 a similar process to those of someone going through stages of grief after loosing someone You are grieving. Grieving for the person you wanted to be, the life you had, maybe work, hobbies and things you can no longer do, The life you wanted to lead with plans made for the future, you now can't do. It's like the carpet has been swept out from under you and no previous experience in life so far has prepared you to cope with this situation.

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 let your head process everything.

 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 and many are currently struggling with exactly the same issues! There are also plenty of organisations and charities 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. Guilt that I'm not doing enough, not good enough at what I am doing. Carrying guilt isn't good for anyone. An in situations that are beyond our control, there really should be no place for guilt or blame. But they can both be hard to let go of.

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. Accept that in order for you to do as much as possible you need to be very careful with what you do and when. Accept that flares can happen and things can unfortunately change suddenly. 

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 as 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! People cope with grief in different ways. It's important to remember this, and that you and your loved ones may be at different steps in the process. Also like with any grief, it doesn't ever go away - but it does get easier to cope with as time goes on. You won't always feel as bad as you do now.

 Just as there are groups for people with M.E and Fibromyalgia, there are groups, forums and organisations for partners, carers and family of those with the illnesses where people will understand what they are going through too. Resources for these can be found online or accessed through a carers assessment.

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! People who understand the struggles you have on a daily basis, because that is there reality too.

Find things that help you cope when you feel like you can't and that will help you to relax; a favourite show, audiobooks, meditation, doing crafts...whatever works best 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. It was a hard decision to make and I still care about them deeply but the relationships and expectations people had of me (due to not understanding my illnesses) were affecting my health too much so, I had to stop being in contact with them. Things improved when I wasn't constantly pretending to be well.

For a long time, I thought that admitting I was ill, admitting that there were things I could no longer do, needed help with or using aids to help 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!

 Using aids gave me freedom that I didn't have without them. I didn't want a wheelchair, but the alternative was being completely housebound. I wish I had of accepted using aids sooner than I did. I'd advise anyone unsure of trying something to do it. Others really mostly don't care and if they do, that says more about them than it does about you. Yes you'll get a few looks and possibly strangers being nicer to you but you're also doing what's best for your health and using less spoons by using an aid. Or able to do things you otherwise couldn't. The benefits definitely outweigh the few odd glances you might get or little curious stairs from little children.

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 discovering 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 going to be different! 

What M.E is...and what what it isn't!

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 bed bound.


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),which can include problems understanding and following conversations, trouble finding words,
• 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, unrefreshing sleep, sleeping for excessive amounts of time, unusual sleep patterns, periods of insomnia
• 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!